Health Progress - Fall 2023

HEALTH PROGRESS®

IMPROVING THE PATIENT EXPERIENCE

FEATURE

51 CAN ‘EXTENDED REALITY’ TECHNOLOGY BRING MORE HUMANITY TO HEALTH CARE?

Kelly Bilodeau

DEPARTMENTS

2 EDITOR’S NOTE BETSY TAYLOR

57 COMMUNICATION

CHA’s Vision Statement: A Closer Look BRIAN REARDON

60 ADVOCACY

Mental Health Advocacy: Much Accomplished, but Much Left To Do CLAY O’DELL, PhD

62 AGING

‘Nursing Homes Are People’s Homes’ — National Coalition Puts Residents’ Needs Front and Center ALICE BONNER, PhD, RN, and SUMIRE MAKI

65 MISSION

The Power of Blessing: An Ancient Approach to a Culture of Belonging JILL FISK, MATM

4 EFFECTIVE COMMUNICATION PLAYS A KEY ROLE IN PATIENT SATISFACTION

José Domingos

8 LISTENING TO PATIENTS TO IMPROVE HEALTH CARE EXPERIENCES

Elizabeth Garone

13 ‘DOUBLE-DUTY’ CAREGIVING: CLINICIANS CARING FOR OTHERS AT WORK AND HOME NEED SUPPORT

Debra Kelsey-Davis, RN, MHSA

18 CARING FOR THE TRANSGENDER PATIENT: LESSONS FOR PASTORAL AND SPIRITUAL CARE

Fr. Charles E. Bouchard, OP, STD, and Jamez Terry, MDiv, BCC

24 HOW ‘RECOGNIZE AND RESCUE’ APPROACH LEADS TO LIFESAVING OUTCOMES

Mohamad Fakih, MD, MPH, and Richard Fogel, MD, FACC, FHRS

30 ‘YOU CAN FEEL THE MAGIC’ — NEURODIVERGENT PEOPLE EXPLORE CREATIVE POTENTIAL AT SSM HEALTH STUDIO

Jeremy Chapman, MD, and Meg Puddy, MA, BCBA

37 WHY IS IT SO HARD TO DO THE RIGHT THINGS IN HEALTH CARE?

Sr. Rosemary Donley, SC, PhD, APRN, FAAN

42 A VISION FOR HOPE IN CATHOLIC HEALTH CARE

Johnny Cox, PhD, BSN

46 PALLIATIVE CARE AND HOSPICE: HOW CAN WE OVERCOME BARRIERS TO THEIR USE?

Michael Connelly

67 COMMUNITY BENEFIT GLOW Program’s Regional Approach Routes People to Effective Care AMIE COCKRELL, RN, MBA-HCM, CPHQ

70 ETHICS

Embracing New Perspectives Can Lead to Transformation

NATHANIEL BLANTON HIBNER, PhD

29 POPE FRANCIS — FINDING GOD IN DAILY LIFE

72 PRAYER SERVICE

IN YOUR NEXT ISSUE BUILDING HEALTHY COMMUNITIES

Illustrations by Andrew Baker

Iwent in for a routine screening as a patient years ago, having just written for CHA about the latest electronic medical record advances, to have a care provider write some of my details on a sticky note and slip it in her pocket to add to my files later. Strapped for time, she was undoubtedly doing the expedient thing, if not perhaps the one with the greatest likelihood of making sure the right information went into the right file.

More recently, I had an allergic reaction to a shot in my arm and returned home with my eye swelling shut. I tried calling the doctor’s office located in a major health care center several times, and no one picked up. I drove back over (once again navigating a parking garage, elevator and hallways to a high-rise) and tried to explain to the front desk what was happening, but it took a while as the woman at check-in seemed unwilling to look up from her electronic devices to look at me — the patient.

Minor issues, barely worth mentioning, except that this is an issue about Improving the Patient Experience, and I suspect we all, as patients, have experiences like these. It has been several years since physicians and authors like Abraham Verghese and Atul Gawande so clearly described how technology needs to be designed to be in service to care providers and patients, and not the other way around. If you’re a health care executive, clinician or support staffer, frequent adjustment may be the norm. Get used to one system, and it’s bound to change — hopefully, but not always, for the better.

The patient experience in a health care setting involves data, and of course, much can be learned from that data and related research. Multiple articles in this issue explore how effective communication, data analysis and improved processes can improve quality, safety and outcomes.

But it’s striking, too, what cannot entirely be

quantitatively measured: how we care for everyone as God’s children; the reassuring hand of a nurse on a patient’s shoulder; the chaplain who stops by to listen and offer a blessing. The article written by CHA’s Director of Mission Services, Jill Fisk, delves into theology related to blessing and what that divine affirmation for self and others means to build the culture of a Catholic ministry.

We’ve made several technology changes inhouse at CHA, and I joked with a colleague in the hall, borrowing a title from an old Terminator movie, that our current age strikes me as The Rise of the Machines. I, perhaps like some of you, have a love-hate relationship with technology. It’s grand when it makes my life easier, and it’s astonishing the libraries of information we have at our fingertips. Writer Kelly Bilodeau’s article on how Extended Medical Reality is used in health care is a thoroughly intriguing look at some of the ways the doors of technology are opening wider, expanding our vistas and the ways we experience the electronic and broader world.

But as ethicist Johnny Cox with the Alliance of Catholic Health Care explores in his essay on resisting the medical-industrial complex and its tendency toward depersonalization, it is in the sometimes hard-to-measure ways we deliver care that distinguishes Catholic health care. The Holy Spirit dwells among us in the work we do, Cox reminds us. May we remember every day that honoring the human dignity of one another is a choice, a choice well-made when it grounds our work and our interactions with each other.

BETSY TAYLOR

®

VICE PRESIDENT, COMMUNICATIONS AND MARKETING BRIAN

P. REARDON EDITOR

BETSY TAYLOR btaylor@chausa.org

MANAGING EDITOR

CHARLOTTE KELLEY ckelley@chausa.org

GRAPHIC DESIGNER NORMA

KLINGSICK

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2023 AWARDS FOR 2022 COVERAGE

Catholic Press Awards: Magazine of the Year — Professional and Special Interest Magazine, First Place; Best Special Section, First Place; Best Layout of Article/Column, First Place; Best Color Cover, Honorable Mention; Best Story and Photo Package, First Place; Best Regular Column — General Commentary, First Place; Best Coverage — Pandemic, Second Place; Best Coverage — Racial Inequities, Third Place; Best Essay, Second and Third Place; Best Feature Article, Second Place; Best Reporting on a Special Age Group, First Place; Best Reporting on Social Justice Issues — Care for God’s Creation, Second Place; Best Reporting on Social Justice Issues — Dignity and Rights of the Workers, First Place; Best Writing — Analysis, Honorable Mention.

American Society of Business Publication Editors Awards: Journalism That Matters Award; All Content — Enterprise News Story, Regional Silver Award; Print — Single Topic Coverage by a Team, Regional Bronze Award.

Produced in USA. Health Progress ISSN 0882-1577. Fall 2023 (Vol. 104, No. 4).

Copyright © by The Catholic Health Association of the United States. Published quarterly by The Catholic Health Association of the United States, 4455 Woodson Road, St. Louis, MO 63134-3797. Periodicals postage paid at St. Louis, MO, and additional mailing offices. Subscription prices per year: CHA members, free; nonmembers, $29 (domestic and foreign); single copies, $10.

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EDITORIAL ADVISORY COUNCIL

Trevor Bonat, MA, MS, chief mission integration officer, Ascension Saint Agnes, Baltimore

Sr. Rosemary Donley, SC, PhD, APRN-BC, professor of nursing, Duquesne University, Pittsburgh

Fr. Joseph J. Driscoll, DMin, director of ministry formation and organizational spirituality, Redeemer Health, Meadowbrook, Pennsylvania

Tracy Neary, regional vice president, mission integration, St. Vincent Healthcare, Billings, Montana

Gabriela Robles, MBA, MAHCM, vice president, community partnerships, Providence St. Joseph Health, Irvine, California

Jennifer Stanley, MD, physician formation leader and regional medical director, Ascension St. Vincent, North Vernon, Indiana

Rachelle Reyes Wenger, MPA, system vice president, public policy and advocacy engagement, CommonSpirit Health, Los Angeles

Nathan Ziegler, PhD, system vice president, diversity, leadership and performance excellence, CommonSpirit Health, Chicago

CHA EDITORIAL CONTRIBUTORS

ADVOCACY AND PUBLIC POLICY: Lisa Smith, MPA; Kathy Curran, JD; Clay O’Dell, PhD; Paulo G. Pontemayor, MPH; Lucas Swanepoel, JD; Indu Spugnardi

COMMUNITY BENEFIT: Julie Trocchio, BSN, MS; Nancy Lim, RN, MPH

CONTINUUM OF CARE AND AGING SERVICES: Julie Trocchio, BSN, MS

ETHICS: Nathaniel Blanton Hibner, PhD; Brian Kane, PhD

FINANCE: Loren Chandler, CPA, MBA, FACHE

GLOBAL HEALTH: Bruce Compton

LEADERSHIP AND MINISTRY DEVELOPMENT: Diarmuid Rooney, MSPsych, MTS, DSocAdmin

LEGAL, GOVERNANCE AND COMPLIANCE: Catherine A. Hurley, JD

MINISTRY FORMATION: Darren Henson, PhD, STL

MISSION INTEGRATION: Dennis Gonzales, PhD; Jill Fisk, MATM

PRAYERS: Karla Keppel, MA; Lori Ashmore-Ruppel

Effective Communication Plays a Key Role in Patient Satisfaction

JOSÉ DOMINGOS President & CEO, Accreditation Commission for Health Care

In today’s dynamic health care landscape, effective communication is pivotal to ensuring patient satisfaction and fostering positive care outcomes. From my perspective and experience leading an accreditation organization with programs for a wide range of health care settings, I see firsthand the impact of successful communication within and across care teams and between providers and patients. Proactive recognition and prioritization of good communication skills improve patient satisfaction in tandem with more consistent achievement of desired health outcomes.

For decades, research has consistently shown that effective communication between health care providers and patients is a vital aspect of patient care. For example, a 2017 report published in Studies in Health Technology and Informatics revealed that patients who perceive the communication with their providers to be of high quality are more likely to maintain treatment plans, achieve better health outcomes and report higher levels of satisfaction.1 This aligns with long-held nursing values that prioritize patient-centered communication, which recognizes the importance of tailoring care to individual needs and responding to patient health concerns.2

Across health care settings, communication that is clear, honest, delivered with empathy and in a manner easily understood by the patient — and, often, their family members — helps to manage expectations, ensure follow-up and treatment adherence postdischarge, and improve perception of the entire

health care experience. This connects directly to the reported level of satisfaction.

The significance of patient satisfaction extends beyond subjective experiences. A research report in the Annals of Surgery showed that hospitals with higher patient satisfaction scores tend to have lower readmission rates and fewer incidents of patient harm.3 This demonstrates how satisfaction, driven by communication, yields better outcomes.

Moreover, the Agency for Healthcare Research and Quality emphasizes that poor communication is one of the leading causes of medical errors, which can result in adverse events and patient

Health care leaders must recognize the significance of clear and empathetic communication in fostering positive patient experiences that directly impact their business operations.

harm.4 Thus, the quality of communication among all participants in the health care experience plays a critical role in preventing avoidable outcomes and promoting patient safety.

Collectively, the research makes a powerful argument for the immense impact of effective communication on patient satisfaction, treatment adherence, health outcomes and patient safety. Health care leaders must recognize the significance of clear and empathetic communication in fostering positive patient experiences that directly impact their business operations.

DIFFERENT COMMUNICATION DYNAMICS FOR DIVERSE SETTINGS

Having established that the quality of communication — especially between providers and patients — informs patient satisfaction, different settings demand specific strategies and technologies tailored to optimize these interactions. In hospitals, clinics, hospices, home health environments and ambulatory surgery centers, language and cultural considerations should be addressed to ensure communication accessibility and inclusivity across the spectrum. Clear and empathetic communication establishes trust, enables understanding of patients’ concerns and provides insight on how to address their needs. It also empowers patients by providing the information necessary for informed decision-making about their health and treatment options. In specific settings, communication techniques and priorities may vary to effectively meet the needs of the patient population:

Inpatient settings: Clear and concise communication is crucial due to time constraints, unfamiliar terminology and the emotional state of patients. For instance, in an acute care hospital setting, communication is critical for coordinating multidisciplinary teams, managing critical situations and ensuring patient safety. Standardized communication protocols must also adopt patient-centered approaches to contribute to positive patient experiences.

Hospice settings: Effective communication establishes relationships of trust and support. Transparent and honest information enables well-informed decisions, while active listening

IMPROVING THE PATIENT EXPERIENCE

and guidance enhance patient satisfaction by fostering emotional well-being and comfort.

In-Home settings: Communication should be personalized and emphasize rapport-building, patient autonomy and comprehensive instructions.

Durable medical equipment, prosthetics, orthotics and supply programs: Skill in providing detailed instructions and technical support is necessary to ensure patients understand the proper use and maintenance of equipment.

Telehealth services: With suppression of physical cues, remote communication must be engaging and clear. Patients and colleagues will need clear instructions that may include offering technological support and facilitating digital engagement.

Ambulatory surgery centers: Time-limited encounters make quality communication vital for managing patient expectations, providing preoperative information and updates, and offering clear postoperative instructions.

In each of these settings, targeted communication approaches enable health care providers to focus on specific challenges and ensure effective engagement with patients.

Changes in technology further revolutionize patient-provider interactions and give health care executives new challenges and opportunities to enhance the patient experience. These advancements — including electronic health records, telemedicine, patient portals and remote monitoring — have changed how health care is delivered and experienced.

Empowering patients with knowledge and skills to manage their care gives patients more opportunities for engagement and direction of their own health care trajectory. It is critical to focus on the beneficial uses of tools (especially electronic portals and health records), which includes access and on-demand convenience for

Empowering patients with knowledge and skills to manage their care gives patients more opportunities for engagement and direction of their own health care trajectory.

patients, and error reduction and improved care coordination for providers.

However, the possibility exists for these channels to depersonalize the patient’s experience, especially if the offerings are not highly intuitive for those with minimal digital literacy. Therefore, including education when introducing these resources is important, as is striking a balance between human interactions and the use of digital tools.

STRATEGIES FOR GREATER UNDERSTANDING AND ENGAGEMENT

In every setting, active listening forms the foundation of effective communication. Health care professionals who actively listen demonstrate genuine interest and empathy toward their patients, allowing them to understand patients’ concerns, fears and expectations. This approach fosters a trusting and supportive environment, promotes stronger patient-provider relationships and enhances overall satisfaction.

To ensure effective communication, health care professionals should employ clear and patient-centered strategies that prioritize patient understanding and engagement. Many of the following techniques are embedded within accreditation standards:

1. Use plain language and avoid medical jargon: By simplifying terms and avoiding jargon, providers can help ensure that patients successfully absorb a wide range of information. Simple language facilitates better communication, improves patient comprehension and empowers informed decisions.

2. Visual aids and written materials: Supplementing verbal instructions with visual aids — such as diagrams, charts, infographics and written materials — enhances patient understanding and retention. Visual aids can effectively convey complex information, making it more accessible and engaging for patients. Printed materials — such as pamphlets or brochures — can serve as valuable references for patients to reinforce and revisit vital information. Because health-related information can be complex, these should be written at a mid-elementary school comprehension level so that they are easily understandable.

3. Engaging patients in shared decisionmaking: Patients should be actively involved in their care, and establishing a shared decisionmaking process is crucial. Care professionals

should explain the risks and benefits of treatment options to patients and empower them to actively participate in their plan of care. This is an area in which patient representatives can play an important role. Minors, individuals with cognitive deficits and those with language barriers are examples of patients who need another agent involved for decision-making, whether a guardian or an interpreter. However, the emotional element in managing a health concern can make it difficult for anyone to hear and process complex information in real time. While a competent adult patient should always retain the right to identify who may or may not participate, a trusted support person who listens — perhaps taking notes, asking questions and providing information and insight — can act as an advocate for the patient’s values, preferences and goals. This allows provider teams to collaboratively identify the best course of action and yields increased patient satisfaction and treatment adherence.

4. Ongoing education and support: Patient education should be an ongoing process that equips individuals with the knowledge and resources needed to effectively manage health concerns. Health care organizations should provide education through such channels as group sessions, one-on-one consultations, online resources and informational materials. By offering ongoing help and education, providers are supporting not only the needs of individual patients, but those of their entire community. Effective communication also involves assessment to make sure patients understand information being shared with them.

5. Incorporate cultural sensitivity: Patientcentered care demands awareness of diverse expectations, communication styles and behavioral norms. While organizations cannot be expected to alter standardized protocols for care, they can — and should — incorporate guidelines to ensure that patients feel not just heard but understood.

Accreditation and Medicare standards for patient rights and emergency management urge cultural competency training for staff. In addition to shining a light on the importance of recognizing the diversity of patients, this best practice promotes sensitivity to their needs as individuals and appropriate actions to meet those needs.

Similarly, awareness of faith-based customs and preferences is important to a whole-person approach to care. Not every patient will feel

empowered to speak out on behalf of their spiritual needs, but every patient should be offered the opportunity to do so, thereby enhancing trust in the relationship with the provider.

EMPOWERING COLLABORATION, ENHANCING OUTCOMES

While health care organizations may not typically use the term “customer service,” it correlates with patient experience. It serves as a critical metric for evaluating overall organizational performance and can impact financial outcomes.

From my perspective, “customer service” refers to the support provided to individuals using health care services, while “patient experience” encompasses the path to — and the quality of — treatment for illness or injury and the associated interactions with the health care organization. These two concepts are interconnected, as customer service represents the actual support offered, while patient experience reflects its perceived quality. Together, customer service and patient experience significantly influence the organization’s success.

Health care operates as the ultimate teambased activity, involving multiple disciplines that rely on interdependence and collaboration. Adopting an intentional customer service approach empowers the entire care team to use thoughtful communication skills with every interaction. This approach creates a safety net for the patient experience by fostering an internal customer service culture.

In this culture, every member of the health care team contributes to problem-solving and improves the patient experience. By encouraging open communication, collaboration and creativity, organizations can optimize customer service and enhance patient outcomes. Recognizing the inherent value of effective customer service and

IMPROVING THE PATIENT EXPERIENCE

its impact on patient experience is essential for achieving success in the health care setting.

CONTINUING THE PATH TO SOUND COMMUNICATION

Effective communication forms the bedrock of patient satisfaction and fosters trust, collaboration and better health outcomes. Health care executives and providers must recognize the significance of communication quality and continuously improve their practices.

By employing active listening, adopting clear and patient-centered communication strategies, and providing continuous education and support, health professionals can create an environment that promotes patient understanding, engagement and empowerment. These strategies not only improve patient satisfaction but also lead to better treatment adherence, improved health outcomes and stronger patient-provider relationships. By prioritizing effective communication, health care providers can deliver patient-centered care and enhance the overall patient experience.

JOSÉ DOMINGOS is president and CEO of the Accreditation Commission for Health Care (ACHC), a nonprofit health care accrediting organization with more than 35 years of experience promoting safe and quality patient care.

NOTES

1. Alex H. Krist et al., “Engaging Patients in DecisionMaking and Behavior Change to Promote Prevention,” Studies in Health Technology and Informatics 240 (2017): 284-302, https://www.ncbi.nlm.nih.gov/pmc/ articles/PMC6996004/.

2. Susan Henly, “Health Communication Research for Nursing Science and Practice,” Nursing Research 65, no. 4 (July/August 2016): 257-258, https://doi.org/10.1097/ NNR.0000000000000171.

3. Dr. Thomas C. Tsai, E. John Orav, and Dr. Ashish K. Jha, “Patient Satisfaction and Quality of Surgical Care in U.S. Hospitals,” Annals of Surgery 261, no. 1 (January 2015): 2-8, https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC4248016.

4. Catherine Dingley et al., “Improving Patient Safety Through Provider Communication Strategy Enhancements,” Advances in Patient Safety: New Directions and Alternative Approaches 3 (August 2008): https://www.ncbi.nlm.nih.gov/books/NBK43663/.

Effective communication forms the bedrock of patient satisfaction and fosters trust, collaboration and better health outcomes.

Listening to Patients to Improve Health Care Experiences

ELIZABETH GARONE Contributor to Health Progress

Hospitals and medical facilities place a strong emphasis on not just medical care, but the whole patient experience around it — including before, during and after a hospital stay — and always look for innovative ways to improve it. This is especially so after the COVID-19 pandemic, which led to high patient dissatisfaction due to staffing shortages, cutbacks and other circumstances.

When health care systems ask patients and their loved ones what they need and take the time to listen, they better respond to what matters to those they serve. Patient experience is such an important part of today’s medical landscape that entire organizations, such as The Beryl Institute, have made it their mission to focus on this topic.

“It’s not simply what happens in clinical boxes,” says Jason Wolf, president and chief executive officer of The Beryl Institute and founding editor of the Patient Experience Journal. “Every interaction someone has in a health care system — not just with providers and clinicians, but with the front desk person, the valet person, the person who sends you your bill or calls to collect from you — all of those interactions comprise someone’s health care experience, the perceptions they have of you in the community.”

As a global community and organization that focuses on patient experience research, The Beryl Institute defines patient experience as “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.”1 Improving the patient experience can manifest in many ways, but many health organizations use patient advisory boards

or councils — made up of former patients, families, other community members and sometimes staff — to get the pulse on patients.

Still, there is no single, cookie-cutter approach that works for all institutions — nor should there be, says Wolf. “We know that not everybody can, nor should they, follow the same steps. So we work to ensure people have access to the information that will best help them address the populations they serve, the kind of organizations they are and the challenges they face. These are different for every health care system, depending on where they sit in the world.”

WHAT PATIENTS AND FAMILIES REALLY WANT

At Saint Joseph Hospital — part of Intermountain Health — in Denver, one of the approaches to gauge and improve patient experience is the hospital’s Patient and Family Advisory Council, which holds monthly in-person meetings. The council is made up of former patients, community members and staff.

“You have a lot of politics in the hospital and budget considerations, but we seem to get it done,” says Louie Cohn, a council member and former Saint Joseph patient.

A decade ago, Cohn, 70, suffered a heart attack while running a race. He was rushed to Saint Joseph Hospital, where he ended up having to undergo sextuple bypass surgery and was in the hospital for about a week and cardio rehabilitation for a month. He eventually came out with a clean bill of health but, to be safe — and because he liked the staff so much — he decided to continue to come in to see the rehab team. More than 10 years later, he remains in touch with some of the people who took care of him.

Cohn’s hospital and rehabilitation experience was such a positive one that he knew he eventually “wanted to give back.” So, when the hospital reached out to him nearly seven years ago and asked if he would like to be a member of its Patient and Family Advisory Council, he jumped at the chance.

touches to the hospital’s neonatal intensive care unit to make it a more inviting place for families experiencing a stressful time.

The council has been around since 2012, according to Sarah Owen, director of service excellence at Saint Joseph Hospital and the council’s chairperson. “It’s almost like a focus group, where we can just take any of the projects that we’re working on as a hospital and get their feedback on it,” she says. “It keeps us grounded and thinking of what our patients and our families really want.”

The recruiting for the council can be difficult though, says Owen. Former patients often have a lot going on. For example, having a new mother on the council would be helpful — but giving feedback is not high on their priority list due to other obligations as a new mom, says Owen.

Today, Cohn remains a huge advocate of patient advisory councils and easily rattles off numerous examples of how the council has helped bring about positive changes at Saint Joseph. “It’s amazing what our little committee gets done: making better signage, making the rooms safer, better communication — just everything, really,” he says.

Before the council made improvements in the emergency department, some patients perceived aspects of it as “kind of a hot mess,” according to Cohn. “We went in there and helped reorganize the flow. It was also hard to get out, so we made some better signage so people could get out when they were done.” In addition, they added personal

The hospital serves a large number of people who are homeless, and Owen had hoped to recruit someone from that population for the council, but she kept running into dead ends. Instead, she recruited someone who works at the Colorado Coalition for the Homeless, which works toward homelessness prevention and solutions for community members throughout the state. “She’s great at being a voice for them, advocating for them and even a partner for our hospital, because a lot of our patients go over to them to seek further care when they are done with us,” says Owen.

To effectively improve the patient experience, it is vital that hospitals and health care organizations recruit people who reflect the populations they serve, according to The Beryl Institute’s Wolf — or at least find innovative ways to reach them and gain their feedback.

“There has always been a struggle to ensure diversity, inclusivity and representation on patient and family advisory councils, which is still a struggle today,” says Wolf. “This is a critical piece, because in order to best serve your community, you need to actually hear from the range of voices representing the communities you serve.

Today, Louie Cohn remains a huge advocate of patient advisory councils and easily rattles off numerous examples of how the council has helped bring about positive changes at Saint Joseph. “It’s amazing what our little committee gets done: making better signage, making the rooms safer, better communication — just everything, really,” he says.

The folks that have to work three jobs and don’t have time to volunteer their time aren’t usually the people that end up in these roles. So that is a challenge.”

It is also important to engage with patients who might not agree with everything a hospital does, says Sammy Twito, Montana regional director of service excellence at Intermountain Health. “It’s really easy if we choose people who are going to tell us what we want to hear,” she says. “So we do also look for individuals who are going to bring a new perspective and maybe challenge the way that we think of our practice and how we do our work. And it’s so important when we can think about how we can engage them. We ideally would love our patients to be involved in policy development and having a seat at the table in all decisions that are made within our organization, because they really, truly are the primary focus for who we serve and what we do.”

TAKING A DIFFERENT APPROACH

For Dr. Ghazala Sharieff, corporate senior vice president and chief medical and operations officer of acute care with Scripps Health in San Diego, her own experience with a young patient and his grandmother at a children’s hospital many years ago made her take an innovative approach to improving the patient experience.

A seven-year-old boy was complaining of rotating leg pain and fever and had been to three different community emergency departments in the span of a couple of weeks. The X-rays kept coming back negative, but Sharieff decided to ask the grandmother a simple question before letting them leave the ER: “What is your greatest concern?” The grandmother said, “That he has can-

IMPROVING THE PATIENT EXPERIENCE

cer.” Sharieff listened and had a blood test performed. It turned out the boy had leukemia. Listening to the patient and their family made all the difference.

When Sharieff came to Scripps in 2018 as the first chief experience officer, she brought this interaction with her, and the experience led to the creation of Scripps’ One Thing Different campaign. “It’s where the staff gets to decide what they’re going to do differently than what they’re already doing to help our patients in their journey in health care,” explains Sharieff.

When it comes to patient feedback, Scripps has decided to not use an advisory council with regularly scheduled meetings but focus instead in other areas, such as patient satisfaction surveys and a group of current patients who have signed up to answer questions, when asked, around patient experience or quality through the “Scripps Listens” program (the program was paused during the pandemic but the health system hopes to resume it). Scripps invited comments through a notice on its patient portal homepage and by putting out postcards in common areas at its locations.

For example, Scripps was redoing some of its billing, specifically bills mailed to patients. While staff may think it’s clear and easy to understand, others may not, says Sharieff. “Who better to ask than our patients? So, we asked, ‘What would be helpful for you? How do you want to see it organized?’ And we made changes that way,” she says.

Since Scripps has five hospital campuses and numerous outpatient centers and clinics, Sharieff prefers this approach because she can reach more people at once whenever she needs to get a question answered or patients’ thoughts or opinions on a topic.

“There has always been a struggle to ensure diversity, inclusivity and representation on patient and family advisory councils, which is still a struggle today. This is a critical piece, because in order to best serve your community, you need to actually hear from the range of voices representing the communities you serve.”

— JASON WOLF

Hospital board members spend time in the community, which is another way Scripps gauges patient satisfaction. “They get feedback about what’s going well, what we can improve, what they are hearing, and they bring that back and report to me. So, we’ve got multiple different ways for getting the voice of the patient into our organization without having just a separate advisory board.”

Scripps also uses patient satisfaction surveys, but Sharieff’s goal is always to get to the patients before they fill out the surveys. For those patients staying at the hospital overnight, she does this by having them visited once every hour (even during sleep hours to monitor patients but without waking them) to reduce the need for patients to use their call buttons and to get their feedback in real-time.

Sharieff’s staff constantly adjusts, whether from an interaction with a patient or comments from surveys that show areas of potential improvement. “We will pivot and start focusing some initiatives around those,” she says.

QUESTIONS FOR DISCUSSION

MORE THAN JUST ‘CHECKING A BOX’

The best way patient advisors can be engaged and help improve the patient experience is to not “use them to check a box,” says The Beryl Institute’s Wolf. It’s not enough to simply have a council but to engage that council and the people on it as partners to help make actual change. By engaging with current and former patients, says Wolf, “you see people truly listen to and honor the voices of patients and their families in a way that really matters.”

ELIZABETH GARONE is a freelance writer who has covered a wide range of health, business and human interest topics. Her writing has appeared in The Wall Street Journal, The Washington Post, BusinessWeek and The Mercury News, among other publications.

NOTE

1. The Beryl Institute, https://theberylinstitute.org.

Writer Elizabeth Garone takes a look at several ways that health care systems solicit feedback from patients and how they learn from this information to adjust patient experiences.

1. How does your health care system gather feedback from patients? And in health care, where plenty of data is gathered, how is this feedback analyzed and shared with care providers in meaningful ways?

2. When your system or setting asks for opinions and ratings from patients, does it conduct followups to let patients know their concerns are considered and taken into account? If so, how does it do this?

3. This article makes the point that situations such as being sick, busy or without a lot of resources can be some of the greatest challenges preventing individuals from joining patient advisory councils and for hospitals getting feedback when trying to gauge the patient experience. What more can be done to reach these populations? Is there a way to get their responses while also making sure it’s easy for them to do?

4. When engaging in the healing ministry of health care in Catholic facilities, it can be challenging to respond to every patient as a child of God. How are you called in the ministry work to respond with compassion and care to every person you encounter? What can you do if you are tired, overwhelmed or have a particularly difficult experience with someone to recharge and reset, so you don’t carry that negative interaction forward?

Caregiving: Clinicians Caring for Others at Work and Home Need Support

DEBRA KELSEY-DAVIS, RN, MHSA Nurse and Caregiving Consultant

’m doing the best I can,” has become the exhausted refrain of health care workers who find themselves pulling “double-duty,” caring for patients at work and then rushing home to care for a loved one. The stress and toll on their physical and mental health is staggering. But it does not stop there. As you might imagine, struggling to juggle work-life caregiving directly impacts virtually every aspect of their lives — the people they care for, their jobs, their peers and the many relationships they value. This growing number of people caregiving around the clock presents unique challenges to health systems and new opportunities to innovate.

THE RISE OF CAREGIVING AROUND THE CLOCK

Employers across all industry segments are waking up to the realization that up to 73% of their workforce has a secret second job: caregiver to a family member.1 For health systems, the projected impacts are even more significant than for other types of employers. However, the exact number of health care workers who are double-duty caregivers is unknown, because data are scant.2 Why? Employers do not routinely ask them, nor do workers tell their employers.

Geri Baumblatt is co-founder of the Difference Collaborative, a nonprofit focused on research, advocacy and improved organizational design related to the intersection between caregiving and work. Last year, Baumblatt coauthored a study about nurses who are also family caregivers and how that affects individuals,

organizations and the care that they provide. She said one big challenge to raising awareness of the issue and working to bring about systemic improvement is that nurses don’t self-identify — they don’t voluntarily share they are carrying the additional role of family caregiver, nor do they often fully voice the complexities of the situation they’re in. “Health care employers realize it’s happening subconsciously, but are not consciously aware of it being an issue to address,” says Baumblatt.

Simply look around you, or even look in the mirror, and you will see double-duty caregivers in your midst. They are the nurses, doctors, chaplains and so many other caring professionals who are passionate about helping others. It makes perfect sense then that their passion carries over into their personal lives, too.

‘Double-Duty’

REAL CHALLENGES, REAL PEOPLE

“My biggest challenge was how to do both of my jobs well, caring for Mom and doing my job without guilt. I was constantly worrying. The feeling of having to make the choice between my job and caring for my loved one took its toll on me,” says Deborah Weber, who regularly found herself driving two hours — at a moment’s notice — when her chronically ill, aged mother’s condition changed. Weber eventually made the difficult decision to leave her nursing job in clinical improvement near Chicago to alleviate her stress and care for her mom.

You can feel the impact of the stress and the exhaustion, too, in Pamela Cacchione’s reflection on her dual caregiving experience: “I’m constantly being pulled in two different directions. Even as a nurse practitioner specializing in gerontology, the challenges are significant — both physically and emotionally tough — when trying to make the difficult choices to get Dad the right care.”

Indeed, the stress and mental health impacts of double-duty caregiving are significant. In 2020, a staggering 82% of double-duty caregivers reported having at least one adverse mental health symptom.3 Burnout, physical strain and the emotional stress of caregiving are at alarming levels.4 Double-duty caregivers are particularly vulnerable to increased risk for poor health outcomes, decreased work productivity, increased risk of making drug errors or mistakes, and are the least supported.5

Not surprisingly, most employers lack a true sense of the full impact of this dual role, contributing to widening misperceptions between employer and employee. This confusion in turn contributes to a misaligned approach in how well the organizational culture supports balancing caregiving with work and can leave double-duty caregivers continuing to struggle between work

IMPROVING THE PATIENT EXPERIENCE

and caregiving responsibilities.6

As Baumblatt explains, “Ten percent of the nurses I interviewed thought their caregiving had a negative impact on their care delivery, while 24% of their managers thought double-duty caregiving impacted quality of care and patient safety.” Because we lack hard data, attitudes and perceptions are all we have to go on. While it’s currently hard to measure, the effects of double-duty caregiving are real.

BALANCED WITH BLESSINGS

Both the patient in a care setting and the loved one at home — also a patient — are blessed by the dual role. “My sense of compassion with patients and their families increased,” says Maria Arvonio, president-elect for the National Association of Catholic Nurses, USA. “As a hospital supervisor working with families making end-of-life decisions, I was able to tap into what I was going through, navigating these same issues with my parents, and am able to be a more understanding advocate for them.”

Similarly, Janet Munday, a public school nurse in Wapakoneta, Ohio, says caring for her dad with Alzheimer’s taught her how to be more patient and listen differently. “I was able to hone my skills because of caring for Dad and became a more compassionate, better listener with my patients.”

As Cacchione so perfectly summarizes, there are distinct advantages to being a double-duty caregiver, saying, “I had the ability to draw on my professional knowledge as I cared for Dad. I knew what to do at home, who to ask for help and what equipment would provide him the best support.”

MAKING THE CAREGIVING PROCESS EASIER FOR ALL

So, what can be done to make the lives of double-duty caregivers better and easier? Those serving in this dual role say they need more than

“I’m constantly being pulled in two different directions. Even as a nurse practitioner specializing in gerontology, the challenges are significant — both physically and emotionally tough — when trying to make the difficult choices to get Dad the right care.”

— PAMELA CACCHIONE

the traditional employer offering of Family Medical Leave Act days. Although it’s a good benefit, it’s not enough.

To help improve her challenging situation, Weber suggests, “I need a support group available to me. That would be a lifesaver.” And because double-duty caregiving is complex, she adds, “I, too, need practical tools to help me stay as organized as possible, along with spiritual resources to sustain me on a daily basis.”

Considering at-work solutions, Arvonio makes the case for having a “culture of understanding” among peers, saying, “Double-duty caregivers often feel their jobs are at stake if they call off to care for their loved one.” She suggests that managers “create a list among staff to volunteer to cover” in situations when the double-duty caregiver has an unplanned event. Other workplace ideas include offering day care for older adults to employees, similarly as it is provided today for workers with children.

And, of course, the need for access to additional education and training is critical. Cacchione recommends providing “support in locating financial, legal, transportation and other community resources because it takes so much time to figure these things out, and it’s often accompanied by a great deal of frustration.”

INNOVATION ESSENTIAL TO ADDRESS DOUBLE-DUTY CAREGIVERS’ NEEDS

There is no single answer to solve all of a doubleduty caregiver’s needs. However, by increasing awareness of the effects of this dual role on the caregiver, their organization and their patients, new resources and inventive initiatives can be developed, creating opportunities to innovate and collaborate.

Up to this point, programs to support caregivers have been largely aimed at the family caregiver. Though much can be learned from programs supporting family caregivers, innovation is necessary to address the unique challenges of the double-duty caregiver.

The first step is to gain a better understanding of what areas to take action on and address. The good news is there’s substantially more investigation underway, where before little attention had been paid to the dual role of a health care professional who also had family caregiving

responsibilities.

Among a handful of initiatives, Henry Ford Health system recently expanded their family caregiver support program CARE (Caregiver Assistance Resources and Education Program) to also focus on employees who are double-duty caregivers.7 Launched as an online support group to create connection and support, their Employee Resource Group for double-duty caregivers has grown to more than 1,000 members.

Another initiative, which launched this fall, is the formation of an advisory group of health care leaders who are partnering with Nourish for Caregivers, a faith-based family caregiver ministry serving caregivers across the country, to collaborate on creating a program tailored to doubleduty caregivers.

Clearly, there is a great need for support for double-duty caregivers and much room for innovative solutions. Emphasizing whole-person wellbeing will be essential as new initiatives are created and tested to support the double-duty caregiver. Catholic health care, with its long history of holistically caring for mind, body and spirit, is well-positioned to take a leadership role in defining and implementing models to care for the rapidly growing population of double-duty caregivers.

“I’m doing the best I can,” is one way to power through double-duty caregiving. But there are other, better ways. Through collaborative innovation, there is hope to bring those solutions to those who need it most. As a longtime participant of a faith-based caregiver support group, double-duty caregiver Dabney Messer-Rehak, RN, best explains it, “Being supported with needed resources while integrated into a community of caregivers, as well as learning to take it back to God, has helped me recognize the graces of my caregiving roles, and it has been life-changing for me.”

Nourish for Caregivers’ Double-Duty Caregiver Advisory Group formed this fall and is seeking interested health care leaders to help inform and collaborate on solutions for programs that can effectively address the needs of double-duty caregivers. For more information on participating in this group, please contact Kelly Johnson at kjohnson@ nourishforcaregivers.com.

DEBRA KELSEY-DAVIS is co-founder of Nourish for Caregivers and Sagacity.Care, a digital health caregiver navigation and care coordination platform. She is a double-duty caregiver and a member of the board of directors for the Illinois Catholic Health Association and the National Association of Catholic Nurses, USA.

NOTES

1. Lisa Rabasca Roepe, “Here’s How People Managers Can Support Employees Who Are Caregivers,” Society for Human Resource Management, February 7, 2023, https:// www.shrm.org/resourcesandtools/ hr-topics/people-managers/pages/how-tosupport-caregivers.aspx.

2. Geri L. Baumblatt et al., “The Impact on Organizations, Individuals, and Care When Nurses Are Also Family Caregivers,” Nursing Outlook 70, no.3 (May-June 2022): 381-390, https://doi.org/10.1016/ j.outlook.2021.12.001.

3. Mark E. Czeisler et al., “Mental Health, Substance Abuse, and Suicidal Ideation Among Unpaid Caregivers of Adults in the United States during the COVID-19 Pandemic: Relationships to Age, Race/Ethnic-

ity, Employment, and Caregiver Intensity,” Journal of Affective Disorders 295, no.1 (December 2021): 1259-1268, https://doi. org/10.1016/j.jad.2021.08.130.

4. “2020 Report: Caregiving in the U.S.,” AARP and National Alliance for Caregiving, May 2020, https://www.aarp.org/content/ dam/aarp/ppi/2020/05/full-reportcaregiving-in-the-united-states. doi.10.26419-2Fppi.00103.001.pdf.

5. “Supporting Double Duty Caregivers: A Policy Brief,” Mount Saint Vincent University, https://www.msvu.ca/wp-content/ uploads/2020/05/PolicyBrief_Revised202Jan202013.pdf.

6. Joseph B. Fuller and Manjari Raman, “The Caring Company: How Employers Can Help Employees Manage Their Caregiving Responsibilities — While Reducing Costs and Increasing Productivity,” Harvard Business School, January 2019, https://www. hbs.edu/managing-the-future-of-work/ Documents/The_Caring_Company.pdf.

7. Jeanne Sheils Twohig, “Doing Double Duty: Health Care Workers Who Also Care for Loved Ones,” Center to Advance Palliative Care, November 19, 2021, https:// www.capc.org/blog/doing-double-dutyhealth-care-workers-who-also-care-forloved-ones/.

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Caring for the Transgender Patient: Lessons for Pastoral and Spiritual Care

FR. CHARLES E. BOUCHARD, OP, STD Senior Fellow and Consultant for Aquinas Institute of Theology

JAMEZ TERRY, MDiv, BCC Chaplain, Providence Alaska Children’s Hospital

Gender has received a great deal of attention in the past 10 years. Hardly a day goes by that there is not a media report on the clinical, legal and ethical aspects of the transgender experience. All of these come together — or not — in the political blender where, on one hand, trans people are used as an icon of individual civil rights, or, on the other hand, as an example of moral and spiritual decline.

Despite all the publicity, the spirituality and the spiritual needs of trans persons have gotten very little attention.1,2 We believe it is important to examine their experiences more closely, not only to provide better care in our Catholic hospitals and clinics, but also because the trans experience may help the rest of us see new spiritual dynamics in our own lives.3

THE MOST BASIC QUESTION

The trans experience is important to all of us because it is rooted in a fundamental question about human life. Sr. Luisa Derouen, OP, a Dominican sister and spiritual director who has accompanied hundreds of trans people for nearly 25 years, says the first step in our path to understanding is to ask, “Who am I?” Each of us grows into mature awareness of our own existence and becomes aware of who we are in relationship to God and others. The search for the truth of existence is more difficult for trans people. They don’t choose to be transgender and therefore can’t choose “not” to be transgender.4 There is a long list of reputable medical entities that affirm the

reality of transgender people.

But there is another narrative, driven by a few medical entities, politicians and religious leaders from various denominations. This narrative says that trans people don’t really exist, they just think they do. “It is impossible,” Sr. Derouen says, “to show respect for people while at the same time denying that they exist. No matter how nice the words are, being pathologized and marginalized leads to stigma, shame, silence, secrecy and, tragically, suicide.” She has witnessed this marginalization hundreds of times up close and personal and says, “As long as transgender people try to suppress who they are and try to be what everyone tells them to be, they suffer depression, isolation, anger, medical problems, substance abuse, broken relationships and more. But when they make the decision to live from a place of truth and integrity, much of that goes away, and I experience in them peace, joy, compassion, wisdom, inner freedom and an ability to receive and offer genuine love.” She further explains, “We human beings are a complex, mysterious, body-spirit creation of God, and no one is more attuned to the mystery

IMPROVING THE PATIENT EXPERIENCE

UNDERSTANDING TRANSGENDER FACTS

To help provide a better understanding of transgenderism and Catholic health care’s treatment for transgender patients, the following are some commonly asked questions and answers.

What does it mean to be transgender? We all have a set of physical markers of sex — which generally all line up in the same direction as either male or female — and an inner sense of ourselves as male, female or other, which we call gender.

“Transgender” and “trans” are umbrella terms used to describe people whose gender identities are not what is typically expected for the sex they were assigned at birth. While the cause of this difference is not fully known, it is widely understood to be a neurobiological reality.

What do we mean by transition? There is no single way to transition and there are many paths — social and/ or medical — that people may take. For some, to transition socially is enough to feel congruent (for example, name,

pronouns, dress, etc.). Others may transition medically with hormones and/or surgery on primary or secondary sex characteristics after a diagnosis of gender incongruence has been firmly established. As one source puts it, the word ‘transition’ describes “the complex process of authentically living into one’s gender identity, often but not always including leaving behind one’s assigned birth sex. A transition may include coming out to one’s family, friends and/or coworkers; changing one’s name and/ or gender markers on legal documents; hormone therapy; and/or possibly (though not always) some form of surgery.”

As all people are constantly changing and growing into themselves, it should never be assumed that transition is a finite process to be “completed.”1

of that reality than transgender people. Far from being delusional or choosing to betray the humanity God gave them, they want nothing more than to be faithful to who God made them.”

‘THERE IS NO ME WITHOUT TRANSITIONING’

There is no one way to define or describe transition. For each person, it’s a process of claiming the truth of who they are. In this article, those interviewed gave their names for publication. It can be called a conversion of life, a transformation in God or growing in integrity and freedom — there are many ways it can be described. What is important is recognizing that what transgender people experience is holy and good, not sinful or deluded.

Maureen Cauffey, a trans woman who takes time for meditation every morning and goes to Mass

Do Catholic hospitals provide all transition services?

No. Catholic hospitals adhere to the Ethical and Religious Directives for Catholic Health Care (ERDs) which allow modification or removal of sexual organs only to treat disease, injury or a condition that threatens the health of the person. Hormone therapy usually begins in a physician’s office, but patients who come to Catholic hospitals who have transitioned or are in the process of transitioning can expect hospitable, compassionate care for themselves and their families.

NOTE

1. “Transgender 101: Identity, Inclusion, and Resources,” Unitarian Universalist Association, https://www.uua.org/lgbtq/ identity/transgender.

every day, speaks for many trans people when she says, “There is no life in me without Christ at the center, but there is no me without transitioning.”

The same might be said of each of us. For some, we find Christ at the center as we move through the stages of self-awareness and self-discovery — releasing whatever in us is false and not of God and claiming our true self, where God lives in us. That’s not easy and it takes a lifetime, but for trans people, the process may be especially complex.

The transition process is unique to each person, but from her observations and work, Sr. Derouen describes three general stages.

The first stage is “false integration.” This is the tortuous struggle of trying to not be trans because everyone in their life says they’re not, and the message is loud and clear that being trans is not a good

SIX PRACTICAL SUGGESTIONS FOR SPIRITUAL CARE OF TRANSGENDER PERSONS

JAMEZ TERRY, MDiv, BCC

Chaplain, Providence Alaska Children’s Hospital

Like Sr. Luisa Derouen, OP, I have been active in trans communities for more than 20 years. Similar to her, my ministry has been grounded in the trans community. But unlike her, it was not ministry that led me into this community. Rather, it was my trans community that led me into ministry.

When I was a young trans person, I was deeply faithful and a regular churchgoer, which made me unique among my friends. Over time, by paying attention to the ways that religion crept into the edges of conversations — and noticing how it showed up in images, metaphors, our questions and the stories through which we defined ourselves — I came to recognize that many trans people around me were people of faith.

However, a long history of persecution and intolerance had caused most to withdraw from organized religion. I saw that most trans people were not talking about their spiritual lives — neither to one another or anyone else. I witnessed a particular sort of loneliness, a deep yearning and a need for ministry that would tend to these wounds and carve out new paths for healing. And, in this recognition, I began to discern my own call to ministry, specifically to one that would help bridge the gap between trans communities and religious communities.

Sr. Derouen has spoken and written beautifully about our responsibility to believe people when they tell us who they are, about the central role of dignity and integrity in the lives of trans people, about the deep soul work that occurs as people discover who they are and who they are meant to be, and about the relationship between gender transition and spiritual formation.

Let me build on that foundation by offering several practical suggestions for

providing spiritual care to trans persons.

1. Overcome barriers: We must recognize the hurt that religious traditions, including Catholicism, have often caused in the lives of trans people, especially when we show up as representatives of those traditions. As a hospital chaplain, I frequently walk into rooms where patients or families may not have sought my services but could definitely benefit from them. I have a short time to establish trust before they decide whether they will “let me in,” both literally and metaphorically. If people are going to let me into their most honest and vulnerable places, the places where the most profound revelations of the Spirit occur — where healing is most needed and possible — they first have to believe that I will not do them harm. And if they have been hurt by others who claim to represent the Church, they have no particular reason to expect anything different from me. They are likely to have some pretty strong selfprotective barriers.

If we wish to have meaningful pastoral relationships with trans people and their loved ones, we cannot ignore the reality or the validity of these barriers. It is not enough to simply show up and be nice, to use inclusive language and respect people’s names and pronouns — though those are important starting points. We must acknowledge where harm has been done and locate ourselves in relation to the harm that continues to happen. We must condemn any abuse of trans people and be explicit in our affirmation. Furthermore, we must be honest and proactive in moving through the layers of likely and appropriate resistance, demonstrating that we are worthy of trust before we can begin to do any other spiritual care.

2. Consider the context: Our care does not take place in a vacuum. In addition to the religious landscape in which many of us live, we also exist within a political landscape. The current U.S. political environment is particularly hostile toward trans people. No matter how you vote or where you live, the daily news often contains a barrage of messages from those who would prefer that trans people didn’t exist, and that has an inevitable impact on the spirit. Just recently, I visited a trans patient in the hospital who spoke about how overwhelming and hard it is to feel hopeful in the face of it, and how it has made him “spiritually tired.”

I would venture to say that most trans people in America are probably spiritually tired right now, as debating or defending your basic right to exist is exhausting. Yet, we keep getting back up, living the lives we were created to live, caring for one another and trying to carve out space so that future generations of trans people won’t need to be so tired or fearful. Trans people are incredibly resilient, and trans communities have given rise to some of the most beautiful love of neighbor I have ever seen. But that doesn’t keep us from growing weary and needing places of respite, where our spirits can be nurtured and restored.

3. Be the connection: A central element of spirituality is connection. One of the ways that we care for each other’s spirit is through tending to the places of disconnect. There are many spiritual assessment tools used by professional chaplains, but one of my favorites is to simply consider a person’s spiritual wellbeing through the lens of one of the commandments: Jesus tells us to love God with all your heart, mind and soul and to love your neighbor as yourself. Everything

hangs on our ability to love in these ways so we can consider how a person is doing in relation to God, their neighbor and self.

Trans people are often well connected to self, as they have had to do the hard work of discerning and facing who they are at the core of their being, of grounding themselves in authenticity and integrity. As Sr. Derouen has illustrated, trans people are sometimes well connected to God (or to whatever name they may give to the sacred) — though this is variable and certainly influenced by what they have been taught God thinks of them. When it comes to connection to others, there is almost always some level of disconnect. Spiritual care providers may be especially concerned with a disconnection from the spiritual or religious community.

As we have noted, trans people often have deep spiritual lives. Because of historical trauma and ongoing harm that may have been caused by many religious persons and institutions, those spiritual lives are often lived quite apart from organized religion. And yet, trans people know the fundamental importance of community, gathering and witnessing. There is a reason Christ said, “For where two or three are gathered together in my name … .” (Matthew 18:20) The life of the Spirit is not meant to be lived alone. To be clear, this does not mean that trans people have to re-enter church buildings — that may not be the right choice for every person, now or ever. But trans people need to recognize that, in their lived experiences and their spirituality, and specifically in the intersections, they are not alone. As a spiritual caregiver, you can foster connections, and sometimes you can be the connection.

4. Stand by and stand up: In addition to accompaniment, to standing beside people, you can stand up for people — not only because it is the right thing to

IMPROVING THE PATIENT EXPERIENCE

do and what justice and compassion demand from us, but because your voice — specifically for those who are religious leaders — may carry extra weight in this conversation. You can uplift the dignity of trans persons, both individually and collectively, within the health care systems where you work. Use your pastoral authority and the access to power that you may have as a religious professional in Catholic health care to advocate for trans people.

5. See the gifts before you: You will not always know which people in your care are trans or who has beloved family members who are trans. Many will not tell you because they are afraid of how you will react because they have been hurt before. Regardless of how open you might be, these fears are justified by past experiences. So, when people do choose to share themselves with you, recognize it as a gift. Take the opportunity to see and affirm all of who they are. I recall hearing Casper ter Kuile, a former ministry innovation fellow at Harvard Divinity School, saying that the responsibility of the community is to help individuals identify their gifts, and then to receive them. Can you look at a trans person, see them as a whole person, identify their gifts — including the ones that come with their trans identity and experience — and appreciate how those gifts are serving both that person and the world? If you can, you may be ready to provide your spiritual care to trans people.

6. Hear the good news, too: We talk a lot about challenges within the trans experience. Unfortunately, that is easy to do. However — and this is important — hardship is not the whole story. Trans lives can also be full of love. They can be full of hope and faith. They can be full of meaning and fulfillment. They can be full

of joy. There is thriving and abundant life in trans communities. As another trans chaplain recently said to me, we should be “trauma-informed but not traumaexpectant.” In this sacred work of caring for souls, we are called to weep with those who weep. But we are equally called to rejoice with those who rejoice. And so, our ministries will be incomplete if they don’t leave room for celebrating trans joy.

So how do we care for the soul of the transgender person? We can do this by seeing clearly both its wounds and its beauty, affirming its worth and leaning into its strength, bearing witness and trusting in the wisdom that trans people bring from their own spiritual experiences. Trans people have too often experienced rejection by religious leaders and alienation from religious communities, treatment ranging from benign neglect of their spiritual needs to harsh abuses perpetrated in the name of God. And yet, not even this can quash the life of the Spirit. Even this does not stop trans people from connecting with the God who made us, who sees us, who loves us and calls us to be our whole selves. It does not stop us from seeking and from living the truths that we know.

There are lessons to be found here for all who seek to live with integrity, to pursue the life of the Spirit and to be the people God created us to be. One of my favorite Bible verses comes from the First Epistle of John: “Beloved, we are God’s children now; what we shall be has not yet been revealed.” (1 John 3:2) We are all already God’s beloved children, and we are all constantly in the act of becoming. There is more to be revealed, and we must keep our hearts open to sacred truths and to the holy changes that will come. Bearing witness to trans faith has been powerful, transformative and has shaped my life for the better. May it do the same for you.

thing. Some trans people, like Dawn Wright, live in anguish for many years, fighting the reality that they are indeed transgender. “[I thought] if I transitioned, that would be a mortal sin,” Wright says, “and I would go to hell. But I can’t live this way anymore, and if I don’t transition, I would commit suicide, and that, too, would be a mortal sin and I would go to hell.”

The second stage is “disintegration” — the point at which trans people finally acknowledge that they simply can’t go on living a lie and pretending to be someone they aren’t. There are so many who have stood on the precipice of sweeping and profound loss as they made the courageous decision to live in the gender they know themselves to be. They gradually and very carefully came out to those closest to them: spouses, children, parents and siblings. Then they broaden the circle to friends and church community, coworkers and neighbors. This stage is terrifying because when they come out, they risk losing what they have and, more importantly, losing those they love. Though, in one sense, they finally feel grounded because they aren’t fighting themselves.

Still, the risk and reality of so much loss is incredibly hard to live through. And, for many, it’s only by the grace of God that they get through it. Sara Buechner, a concert pianist, explains it this way, “In the tumultuous 2½ years that followed my decision to transition, friends abandoned me, concert dates evaporated and I lost my teaching job. But within my body, there was complete calm because the journey within was integral to myself, and it was a journey made not alone, but with God.”

The third stage is “reintegration.” Gradually, usually over a period of years, trans people make their way through the painful and complex stages of transition and are finally at home within themselves, with the world around them and closer to God. They still struggle with life’s problems — like we all do — but now they do it with their integrity intact.

It is striking how these three stages reflect a paradigm in human life. We could describe it as “thesis-antithesis-synthesis,” or, in more theological terms, as the “purgative-illuminative-unitive,” or even the “emergence from the dark night of the soul” described by St. John of the Cross, a time that is painful but still full of blessing. We all go through similar stages as we grow in God’s image. The steps of transition are very much the process of conversion as we see more clearly, abandon

inauthenticity and embrace God’s plan.

As Sr. Derouen says, “Walking with transgender and nonbinary people on their journey from a false self to a true self is God’s call to me. They have profoundly shaped my own life in God, and I’ve learned so much from them. They have made me a better woman and have given me the courage to live my own life with greater integrity.”

FR. CHARLES E. BOUCHARD, OP, recently served as senior director, theology and sponsorship, for the Catholic Health Association, St. Louis, before his retirement in June. He now serves as a senior fellow and consultant for Aquinas Institute of Theology in St. Louis. JAMEZ TERRY is a chaplain for Providence Alaska Children’s Hospital in Anchorage.

NOTES

1. This summer, CHA offered a webinar related to spiritual care for transgender people. Attendees represented CHA member health systems, sponsors, dioceses and other Catholic organizations. Because interest was high during that webinar, it was covered in CHA’s Catholic Health World publication. This article, planned in advance of that coverage, aims to build upon additional points from the webinar related to spiritual care.

2. There is a growing body of literature on the spiritual path of trans persons. See the following examples: Julie Exline et al., “Religious and Spiritual Struggles Among Transgender and Gender-Nonconforming Adults,” Psychology of Religion and Spirituality 13, no. 3 (2021): 276-286, https://doi.org/10.1037/rel0000404; Maxwell Kuzma, “For This Transgender Catholic, Advent’s Wait Mirrors the Wait for Embodiment,” National Catholic Reporter, December 22, 2022, https://www.ncronline. org/spirituality/transgender-catholic-advents-waitmirrors-wait-embodiment; David Albert Jones and Claire Jenkins, “Faithfully Transgender,” The Pastoral Review 15, no. 5 (January 10, 2020): 34-38.

3. CHA’s recent webinar on the spiritual and pastoral care of trans persons, called “Care for the Transgender Soul: An Introduction to Spiritual Care for Trans Persons and Their Families,” featured comments from Sr. Luisa Derouen, Chaplain Jamez Terry, and Erica Cohen Moore, Executive Director of the National Association of Catholic Chaplains. It is available at https://www.chausa.org/store/meeting?id=5367.

4. It is important to note that the statements in this article are based on the assumption that there are persons who are transgender from birth and are not merely victims of or adherent to cultural trends or “gender ideology.”

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How ‘Recognize and Rescue’ Approach Leads to Lifesaving Outcomes

MOHAMAD FAKIH, MD, MPH Chief Quality Officer at Ascension

RICHARD FOGEL, MD, FACC, FHRS Executive Vice President and Chief Clinical Officer at Ascension

When people first arrive at one of our hospitals, many may be experiencing some of the worst, most vulnerable times of their lives — or the life of a loved one. They may feel anxious and afraid of what might happen next. They put their lives in our hands, trusting in the safe, quality care they will receive. They also often come with a set of unspoken expectations: please keep me safe; help me navigate my care; provide me with the right care; give me tools to help me stay well; and treat me with respect. For years, the “safe, timely, effective, efficient, equitable and patient-centered” (STEEEP) model, developed by the Institute of Medicine,1 has provided a clear and actionable framework to help Ascension manage overall quality and safety initiatives. Each element of the STEEEP framework has multiple metrics that we report and track over time.

Upon deeper reflection on this framework, we began to see its inherent ties to Catholic social teaching. Through STEEEP, we attend to the whole person and put the patient at the center of all we do as a way to promote and defend human dignity. When we ensure our care is effective, timely and equitable, we act on behalf of justice. As we find ways to make care more efficient, we become better stewards of our resources. And when we provide equitable care, we fulfill our mission to provide care to all, especially for those who are poor and vulnerable. In these ways and more, Catholic health care’s identity inspires and drives our resolute commitment to quality care.

This framework was challenged for Ascension and other health systems across the country during the COVID-19 pandemic — impacting processes, workflows, supply chain, the workforce and more. Hospitals encountered record numbers

of seriously ill patients, requiring complex care and support. Health systems needed a new playbook. And with our enduring mission to sustain and improve the health of individuals and communities in mind, we set out to optimize the care we provided, including our ongoing commitment to quality and safety.

RECOGNIZE AND RESCUE

In January 2022, Ascension implemented at all its hospitals an initiative called Recognize and Rescue, which has helped save nearly 3,000 additional lives. The unique approach to optimize quality and safety across our ministry involves recognizing problems before they happen, then rescuing patients if problems arise. The initiative is organized into two components:

The Recognize component consists of identifying high-risk conditions, situations and

medications and preventing adverse events. Focus areas include: implementing risk-reduction strategies for health care-associated infections, mitigating medication risks, improving the management of sepsis, optimizing the management of patients with respiratory compromise and practicing person-centered engagement.

The Rescue component consists of identifying early when a patient begins to decline and promptly intervening to support improvement in health and function. Focus areas include: standardizing rapid response team and code team protocols and processes, encouraging escalation and use of chain of command for concern resolution, prioritizing frontline health care worker education and promoting teamwork.

COLLABORATION KEY TO SUSTAINABLE IMPROVEMENT

Ascension’s Recognize and Rescue initiative provides a foundation for anchoring standardized processes in care, reducing variation and promoting optimal outcomes in the acute care setting across 12 markets. We achieved this goal through a coordinated, systemwide adoption of a collaborative approach. Promoting teamwork through multidisciplinary partnership was the linchpin that made the adoption of these quality and safety improvement efforts possible. We built a structure to support the work by establishing both system and market teams. Teams in our sites of care brought together multiple disciplines, including physicians, nurses and those working in infection prevention, respiratory therapy, pharmacy,

• Attend to the whole person

• Promote and defend human dignity (patientcentered)

• Act on behalf of justice (effective, timely, equitable)

• Care for the poor and vulnerable (equitable)

• Steward resources (efficient)

analytics, education, consumer experience, environmental services, risk, and quality and patient safety. We tailored our interventions to hospitals with the greatest opportunities and ensured Recognize and Rescue was integrated into market and hospital-level quality efforts and did not duplicate other initiatives.

Successful adoption of the program was made possible with tools used in carrying out a gap analysis, actionable data to help identify focus areas and clear accountability for performance. Process and outcome measures were set to help identify opportunities at the market and hospital levels as well as intra-institutional opportunities at the provider level. System, market and hospital-level accountability was clearly defined, involving physicians, nurses and pharmacists. Partnering with our analytics team, we established and published a monthly updated dashboard for process and outcome measures, with feedback on performance at the hospital, market and system levels.

OUR OUTCOMES

The Recognize and Rescue initiative has enhanced quality and safety across all of our hospitals. We view this approach as a conduit to optimize outcomes and sustain future gains. Through a bundle of aligned interventions, all 12 of our markets with 94 participating hospitals showed sustainable improvements in lives saved and safety events. The graphic on page 27 illustrates how our mission to improve quality and safety has been impacted by Recognize and Rescue thus far.

Ascension draws from both the Institute of Medicine’s STEEEP model and Catholic social teaching in this work.

Effective Care

With the goal of optimizing patient outcomes, we focused on conditions associated with higher mortality, such as sepsis or patients presenting with respiratory symptoms. Integrating a standardized approach for identifying and managing sepsis and encouraging the use of standardized order sets supported a reduction in care variations and led to better outcomes. In addition, we worked on refining the process to ensure appropriate medical, nursing and level of care support was provided to patients presenting with respiratory symptoms. Altogether, such interventions not only helped to improve our outcomes, but also helped us save more lives and anchor our standardized processes in care.

Equitable Care

Exploring results through a health equity lens, we see that our patients who identify as white and

IMPROVING THE PATIENT EXPERIENCE

our patients who identify as Black have comparable outcomes, which underscores our goal of reducing disparities in care. This was similar during the pandemic, when we witnessed no difference in mortality in COVID-19-infected patients who identified as either white or Black after we adjusted for differences in sociodemographic and clinical factors.2 Identifying social determinants of health is one meaningful way to reduce preventable disparities in health outcomes. Ascension Medical Group has implemented a standardized screening tool, exceeding more than 2 million screenings.

Safe Care

The remaining four bars shown on the graph below represent common industry-wide, frontline quality measures that, when managed well, can help keep patients safe from these infections: CLABSI: Central line-associated bloodstream

CALENDAR YEAR 2021

FISCAL YEAR 2023 (JULY 2022-JUNE 2023)

All mortality Mortality white Mortality Black Central line-associated bloodstream infection

Catheterassociated urinary tract infection

Hospital-onset Methicillin-Resistant Staphylococcus aureus bloodstream infection

Hospital-onset Clostridioides difficile infection

Source: Ascension

infection

CAUTI: Catheter-associated urinary tract infection

HO MRSA: Hospital-onset Methicillin-Resistant Staphylococcus aureus bloodstream infection

HO C. Difficile: Hospital-onset Clostridioides difficile infection

We instituted multiple measures to reduce health care-associated infections, with close attention to improving competencies of frontline workers by managing patients with central lines and urinary catheters, using checklists to conduct gap analyses and providing regular feedback to teams on their performance. The teams developed action plans for any gaps identified, and senior leaders were accountable for the outcomes.

IMPLEMENTING RECOGNIZE AND RESCUE

The Recognize and Rescue approach was designed to be replicable. Prior to adoption and implementation, health systems should ask the following questions:

1. How should we structure our team at the system, market and hospital level, and who are our key stakeholders? For successful implementation, organizations will need to convene a team of experts — including physicians, nurses and other health care professionals — with the support of a leader to push for accountability. The Recognize and Rescue toolkit provides the technical information to guide teams on how to implement best practices. Many members are content experts who help provide direction to the market teams on improvement recommendations. Market-based teams are responsible for the work, and a team representing each hospital may be required to ensure goals are achieved, led through a partnership between the chief medical and nursing officers.

2. How can we effectively implement standardized processes and efficiently provide feedback on performance? For productive implementation, it is essential to ensure that support for education and evaluation of performance is in place, especially for measures that are sensitive to frontline caregiver performance, such as for central line-associated bloodstream infections.

3. How will we extract data, measure success and communicate outcomes? Most of the outcome data are publicly reported and easily accessible to any system. However, some other pro-

cesses or intermediate outcomes may require data feeds from electronic health records. Establishing a dashboard for process and outcome measures that allows trending is also important. We were able to share provider-level data for some measures, which enhanced local engagement.

4. How should we establish expectations and clear lines of accountability? For each element of the initiative, owners are clearly identified from system, market and hospital levels and are accountable for their performance. The system team engages the hospitals by providing details on measures of opportunities and may also help offer technical solutions.

5. How can we ensure our approach is sustainable? In parallel with the implementation of the Recognize and Rescue initiative, our teams continue to enhance the work of standard quality and safety evaluations through reviews and root cause analyses for safety events.

QUALITY MEASURES, EFFECTIVE CARE

Recognize and Rescue provides an innovative approach to adopt and cascade quality improvement efforts by having clear elements to implement, coupled with the use of robust data for both processes and outcomes. Through this initiative’s focus on building structures, standardizing processes, providing feedback on performance and ensuring accountability, sustainable improvements transpired around reductions in mortality and infections and the practice of better safety measures. By honoring our commitment to deliver quality treatment, we can help to ensure that all our patients receive equitable and dignified care to continue living longer and healthier lives.

MOHAMAD FAKIH serves as chief quality officer at Ascension. RICHARD FOGEL serves as executive vice president and chief clinical officer at Ascension.

NOTES

1. “Six Domains of Healthcare Quality,” Agency for Healthcare Research and Quality, https://www.ahrq. gov/talkingquality/measures/six-domains.html.

2. Baligh R. Yehia et al., “Association of Race with Mortality among Patients Hospitalized with Coronavirus Disease 2019 (COVID-19) at 92 U.S. Hospitals,” JAMA Network Open 3, no. 8 (August 18, 2020): https://doi. org/10.1001/jamanetworkopen.2020.18039.

Finding God in Daily Life

— Pope Francis’ message on January 10, 2023, ahead of the 31st World Day of the Sick

“We are all fragile and vulnerable, and need that compassion which knows how to pause, approach, heal and raise up.”

WENN US/Alamy Stock Photo

‘You Can Feel the Magic’ Neurodivergent People Explore Creative Potential at SSM Health Studio

JEREMY CHAPMAN, MD Child and Adolescent Psychiatrist, SSM Health Treffert Studios

MEG PUDDY, MA, BCBA Director of Behavioral Health Community-Based Services, SSM Health Greater Fond du Lac

Each day, as we walk into work at SSM Health Treffert Studios in Fond du Lac, Wisconsin, we can almost reach out and grab the energy in the room. Treffert Studios was designed with a mission to help neurodivergent individuals find their passion and express their talents, giving them a voice and tools to share their strengths with the world.1

It houses video and film equipment, musical instruments, art supplies, a theater, a kitchenette and more in an 8,500-square-foot facility. In partnership with Moraine Park Technical College, the studios use a six-part philosophy, known as the Treffert Approach (see sidebar on page 32).2 Treffert Studios assists people of all ages, with specific offerings for those 18 and older, primarily focused on education for professional success and developing multimedia production skills.

The studios provide participants with a physical and virtual space to collaborate on creative arts and multimedia projects, develop teamwork and communication skills, secure employment and gain confidence to live more independent lives. It serves as a safe and supportive environment for young adults to explore their interests and talents and supports their health, including their mental and emotional well-being. “When you find something that you are passionate about and see that other people in your community value what you are doing, your self-esteem rises, your resilience rises and you can go on more confidently into the world,” says Bryan Mischler, a psychotherapist

with Treffert Studios.

Spencer Depies, a 26-year-old with autism who works as a technician with the studios says, “If there was one word that would encompass the ideology of Treffert Studios, it would be ‘hope.’ Life is tough, but with a vehicle like Treffert Studios, my possibilities are endless.”

‘CARRYING THE TORCH’ OF A VISIONARY

Many who learn about Treffert Studios for the first time ask these questions: How did this center come to be, and why is it in Fond du Lac? To answer, it’s helpful to know more about the namesake of our facility: the late Dr. Darold Treffert.

Treffert was renowned for his expertise on savant syndrome. For over five decades, he sought to understand this phenomenon, in which a human being with a cognitive or intellectual disability simultaneously possesses a profound cognitive or creative ability that stands in stark contrast to his or her overall disability.

Treffert’s savant research gained global attention from the media, the scientific community and the public. He published two books and

countless articles on savant syndrome, contributed to documentaries and television programs, and even consulted on the award-winning 1988 movie Rain Man, a film about an autistic savant and his brother.3 Treffert was not only an accomplished psychiatrist and researcher but also a person who touched many lives with his kindness and generosity. He was a mentor to people from elementary school students to experienced clinicians, and he always had time to listen and encourage. He spent countless hours writing to parents who sought his advice and guidance, and he remained in touch with many families for years, following the progress of their children as they grew up.

Treffert believed in the power of love and the importance of supportive families and caregivers. He was often heard reminding caregivers that “love is a good therapist, too” and his own compassion and empathy were a testament to this belief.

Throughout his work, Treffert stayed in his

THE TREFFERT APPROACH

The Treffert Approach, used across the work of SSM Health Treffert Studios, includes:

Accurate assessment: Call things by the right name. Accurate diagnoses and descriptions are key to selecting appropriate interventions.

Strength-based focus: Focus not only on the strengths of an individual, but also the strengths of the parents, teachers, clinicians and community. Nature and natural environment: We all benefit from a connection to nature. Generalization [the learned action of generalizing and the ability to learn new skills] is enhanced when teaching is done in a natural environment, even more so through motion and play.

Nurturing relationships: Relationships are everything. Nurturing relationships is foundational to our ability to accept ourselves — and others — for the unique individuals we are, to respect differences and to appreciate commonalities.

Sensory awareness: Sensory understanding informs all we do. SSM Health Treffert Center and its programs seek to understand and help individuals integrate their senses and create environments that promote sensory sensitivity. Systems (increasing the capacity for success): A systems approach recognizes multiple factors that influence an individual’s success and are required for sustainable change.

hometown of Fond du Lac, opening what was then known as the Agnesian HealthCare Treffert Center in 2016. The center invites individuals of all abilities, their families and communities near and far to explore the potential of the human mind, focusing on strengths rather than limitations. It houses the Treffert Academy, Treffert Autism Services, Treffert Clinic and the Treffert Library. His approach is also used in area schools.4 All of these programs incorporate the Treffert Approach’s sixpart philosophy.

In 2020, a group of inspired clinicians — working alongside neurodivergent individuals Treffert called “fresh new explorers” — began developing Treffert Studios. Treffert died in December 2020, leaving an enormous legacy to uphold. A team of more than 140 clinicians, educators and creative professionals is dedicated to “carrying the torch.”

Photo courtesy of SSM Health Treffert Center

The late Dr. Darold Treffert

The most recent introduction to continuing and building on his work — SSM Health Treffert Studios — opened in spring 2023.

The term neurodiversity was coined by Judy Singer, an Australian sociologist, to promote equality and inclusion of all people while embracing neurological differences. Taking a broader perspective on neurodiversity, those using the Treffert Approach consider the term as reflective of everyone, including those labeled as “neurotypical.” This recognizes the unique ways that people experience and interact with the world around them and, similar to Treffert’s work, acknowledges that there is no one “right” way of thinking, learning and behaving, and that differences should not be seen as deficits but instead contributions to our larger neurodiverse community.

A CULTURAL SHIFT NEEDED FOR SUSTAINABLE CHANGE

Those engaging in the Treffert Approach recognize the importance of various factors when working with neurodivergent people across clinical, educational and vocational systems. But team

IMPROVING THE PATIENT EXPERIENCE

members have seen occasions when supports faded, barriers resumed and individuals were removed from settings where they had been successful. As part of the approach, a central tenet of the mission and vision is to promote “system” change in culture, process, policy and training across settings to promote long-lasting change that will benefit communities. It will not suffice to continue to teach neurodivergent individuals to “fit in” when their skills and perspectives are every bit as valid as those of their neurotypical peers and colleagues. A cultural shift toward sustainable change in our communities, educational settings and the workplace is required. Lasting change and innovative solutions must be addressed at a system level. Treffert Studios was developed with this in mind and created offerings and services to have a positive and lasting impact on the systems that serve our neurodiverse community.

Treffert Studios offers multiple types of services and training, including: Outpatient mental health clinic: Services

Dr. Jeremy Chapman, a child and adolescent psychiatrist, and a participant at SSM Health Treffert Studios spend time in the Zen garden. Raking the stones into patterns can be soothing and provides a canvas for meditation.

Photo courtesy of SSM Health Treffert Studios

include medication management by board-certified prescribing clinicians, psychotherapy, art therapy, speech therapy, occupational therapy and neuropsychological testing.

Creative services: Offerings include fine arts, dance, yoga, music, film production, acting, voice-over, gaming, photography, cooking, illustration, creative writing and much more.

Professional development program: This eight-week virtual program helps neurodivergent young adults gain professional skills, such as building resumés, sensory preferences, portfolios and individual multimedia projects. Sensory preferences relate to a person’s unique way of processing and responding to sensory stimuli from the environment and what may be beneficial to them in the workplace — for example, noisecanceling headphones if a person focuses better when it’s quiet. The ultimate goal is to help increase neurodiversity in the workforce, helping individuals gain employment and financial independence.

Community consultations: The program offers education or training to potential employers, schools and community businesses on neurodiversity-affirming practices and communication strategies.

Sensory garden: The environment is designed to stimulate and engage the five basic senses of sight, smell, sound, touch and taste. This type of garden allows participants to connect with nature while encouraging them to become more aware of their surroundings and their responses to them. Participants tap into the principles of mindfulness as they experience the calming effect of the covered archway, stone paths, Japanese Zen garden and waterfall.

Social clubs and events: Social clubs are designed for individuals to build friendships

and network while engaging in shared interests. Activities include chess, gaming, improv acting, nature adventures, family nights, film screenings and theatre productions, to name a few.

Vocational supports: These offerings will assist individuals with disabilities or other barriers in obtaining and maintaining meaningful employment, as well as coaching to advance their careers. Anticipated to launch in late 2023,

Spencer Depies, 26, works in the kitchenette inside SSM Health Treffert Studios, housed on the campus of Moraine Park Technical College in Fond du Lac, Wisconsin. Depies is a technician at the studios, which focus on skillbuilding for neurodivergent people.

Photo courtesy of SSM Health Treffert Studios

“If there was one word that would encompass the ideology of Treffert Studios, it would be ‘hope.’ Life is tough, but with a vehicle like Treffert Studios, my possibilities are endless.”

— SPENCER DEPIES

offerings will include job training and placement assistance, career counseling, resumé building and interview preparation. Independent skill building: Classes aim to teach practical skills and knowledge that can be applied in a range of situations, whether participants are looking to enhance their career prospects, improve their personal life or simply learn new things.

THE IMPORTANCE OF CONNECTION

Every day, young people make new connections and friends as they learn to express themselves creatively, exchange ideas and build upon one another’s creations at the studios. Many young people, especially since COVID-19, have become accustomed to a more isolated lifestyle with fewer real-life interactions. This is particularly exacerbated for many young adults who face common

barriers to social success, such as anxiety, autism or learning and communication disorders. Treffert Studios offers a place for individuals to get out and interact with others within the context of learning new skills and within the welcoming, colorful and open environment of the center. Many participants we work with don’t communicate their best through speech or written word. Therefore, we are equipped to provide them with the tools they need to express themselves.

One example of someone thriving is Spencer Depies, who grew up around the Treffert Center. From a young age, Depies worked with one of our center’s psychotherapists, and from there, cultivated his communication and public speaking skills while rising in the world of competitive Judo. Today, he uses Treffert Studios to build out his autism self-advocacy

This bejeweled artwork of a whimsical outdoor scene is one example of the “coolages” created by artist Grant Maniér, 27.

Photo by Julie Coy

Watch a video on how SSM Health Treffert Studios in Fond du Lac, Wisconsin, is helping neurodivergent individuals to find their passion and express their talents.

social media accounts and is looking to eventually do live broadcasts from the studios. “Treffert Studios has taught me a great deal about myself, such as creativity, accountability and how to build friendships,” says Depies. Through this platform provided by the studios, Depies not only shares his many talents with others, but his message on inspiration helps other young adults to succeed in their pursuits.

The work and community of the Treffert Center have been so meaningful to those involved that some families have even relocated to be closer to it. Grant Maniér and his mother know its impact all too well. The 27-yearold with autism, who grew up in Texas, finds great support and advocacy through his mother, Julie Coy. As a boy, he tore shreds of paper as a coping mechanism when he became scared or overwhelmed. Coy helped Maniér turn this habit into an artistic endeavor, and through further support provided by Treffert Studios to help expand on his talents and provide him with the professional resources to work outside the studio, Maniér’s collage artworks, called “coolages,” are unique and beautiful creations that he makes for multiple community endeavors.

build a worldwide community of families and individuals who benefit from its services and whose dreams we can support. Team members have connected and aided many individuals in meeting their social and vocational goals since opening the physical location in early 2023. Looking ahead, we aim to expand this work to a virtual platform to allow us to connect with others around the world and further carry forward Treffert’s legacy.

You can feel the magic at Treffert Studios, where people discover their talents and nurture those skills into social and professional success. The studios allow those creating there to tell its story, even as we continue to shape it.

JEREMY CHAPMAN is a child and adolescent psychiatrist at SSM Health Treffert Studios. His clinical interests include neurodevelopmental disorders, such as autism spectrum disorder and ADHD, as well as intellectual and communication disorders. MEG PUDDY is director of behavioral health community-based services for SSM Health Greater Fond du Lac.

NOTES

1. SSM Health Treffert Studios, https://www.ssmhealth. com/treffert-center/resources/treffert-studios.

(Video

Maniér’s artwork is not only visually stunning, but it also serves a greater purpose. He uses his art to raise awareness about the importance of recycling and protecting the environment. Through his platform as an eco-artist, Maniér advocates for the neurodiverse community and raises awareness about autism. He has become a role model for many individuals with autism and other disabilities, showing that they, too, can pursue their passions and make a positive impact on the world.

SPARKING TALENT AROUND THE GLOBE

Now that Treffert Studios is open, the goal is to

2. “The Treffert Approach,” SSM Health, https://www.ssmhealth.com/treffert-center/resources/ the-treffert-approach.

3. Dr. Darold A. Treffert, Extraordinary People: Understanding Savant Syndrome (Lincoln, Neb.: iUniverse, 2006); Dr. Darold A. Treffert, Islands of Genius: The Bountiful Mind of the Autistic, Acquired, and Sudden Savant (Philadelphia: Jessica Kingsley Publishers, 2010).

4. Treffert Way for the Exceptional Mind, https://www.treffertway.com. In 2019, the Treffert Approach was expanded to public education through the Treffert Way for the Exceptional Mind, a partnership with the Treffert Center and the North Fond du Lac School District. This charter school now offers K-8 instruction. Exploration High School in this same school district incorporates the Treffert Approach into education for a broad range of students in grades 9-12. Students gain early experience in the workforce, engage in service learning, mentoring, experience with creative media and leadership curriculum.

Watch a video on Treffert Studios artist Grant Maniér creating his “coolages” using recyclable materials to help raise money for community efforts.

source: Coca-Cola Southwest Beverages)

Why Is It So Hard to Do the Right Things in Health Care?

SR. ROSEMARY DONLEY, SC, PhD, APRN, FAAN Professor of Nursing at Duquesne University

Why is the American health care system so difficult to navigate? People identify difficulties in access, cost and quality as the main issues they encounter when seeking medical assessment and treatment.1 Access refers to the person being examined by the right provider, and in the right setting, for their presenting symptoms and given the correct diagnosis, tests and treatment.2 Cost means that the appropriate treatment and care is paid for by the patient, insurance companies and/or the government. Quality is outcome-oriented and includes more than satisfaction with the provider, setting and treatment. Today, quality of care means that the treatment produces a good or improved outcome, ideally better health.

While access, cost and quality are easy to define, they are hard to implement. The barriers to access for patients include: lack of knowledge, uneven geographic distribution of primary and specialist care providers, no or inadequate insurance, lack of transportation, poverty and limited office or clinic hours.

The United States has the costliest health care system in the world. It is also the only high-income country that does not provide health care for all its citizens.3 In America, health care is a business rather than a benefit. Because of the separation of the health care system between the public (government) and private sector, people receive health insurance from their employers, the government (Medicare, Medicaid or State Children’s Health Insurance Program) or private insurance companies, or they pay out of pocket.

The government has tried to reduce the cost of care through approaches like managed care,

bundled payments, Medicare Advantage (also known as Medicare Part C) and rewarding providers if treatments are successful. Another costsaving and quality-enhancing plan seeks to have hospitals improve care coordination and reduce avoidable readmissions.4 For more than a decade, Medicare has been financially penalizing hospitals with too many avoidable readmissions for certain conditions.

The need for greater alignment between care and insurance reimbursement extends beyond hospitals to home care. When I was a visiting nurse in Pittsburgh, where a large segment of the population was Eastern European, many of our patients were middle-aged women whose parents were immigrants from that region. Several of these patients suffered from debilitating leg ulcers. Because these lesions were usually infected and located on their lower legs, far from their hearts, they were difficult to heal. Most of

the women had difficulty walking and managing household tasks. If the wounds failed to heal after a number of home care visits, the visits were no longer covered by their insurance companies, though the patients may have benefitted from additional care. While patients could pay out of pocket, the insurance companies only paid for treatment that was successful.5

These women found themselves in a difficult position. Although they had health insurance, the illness for which they sought treatment was chronic and very slow to respond to care. Their infected legs had been treated with antibiotics, but the infections returned. The compresses and dressings were challenging to carry out alone without assistance. When a successful outcome was linked with insurance payment, the patient’s only choice was to self-pay.

programs, review data and outcomes, and work for policies and practices that may improve social determinants to help influence the health status of individuals or groups. Understanding the impact of social determinants on health outcomes, community organizations, local and state governments and insurance companies are developing partnerships to support food banks, build safe and affordable housing and help people find and keep jobs.

NAVIGATING COMPLEX SYSTEMS

Members of the public don’t always know how to navigate care systems in the ways that those working in health fields do. To obtain health care, they’re required to locate a primary care provider or a specialist. While patients may ask a primary care provider for a referral, they may also consult their friends, the nurse down the street or visit providers’ group websites. Their choices depend on the quality of information they receive.

This is only one scenario out of many that exemplifies how a “one-size-fits-all” approach to care for treating conditions is not always successful in achieving positive outcomes for patients. Consideration of patients’ environment, support networks, lifestyle, socioeconomic status and other factors is essential when developing plans of care.

BEYOND ACUTE CARE

What characterizes the American health care system? The American health care system is intensive and oriented to the treatment of acute illness. In recent decades, health systems and care providers have emphasized greater attention on the social determinants of health as significant factors in reducing costs and improving care outcomes.6

As noted on the diagram on page 39, these social determinants include social and structural conditions associated with health and well-being.7 While the social determinants of health look beyond biology and disease, they do not provide a road map for accessing health care or improving quality. To do that, lawmakers and community organizations must analyze existing laws and

To access care, patients also have to find their way through an office complex or a hospital labyrinth. Hospitals have several wings, many added after their original construction. Sometimes complex directions are displayed with arrows posted in hallways or via drawn maps on the floor. Others have receptionists or apps to help patients and visitors locate rooms or treatment areas. Those who work in health care might want to ask their friends or family if they were greeted warmly in a health care setting, if they understood how to get from the parking garage to the room where they needed to be, and how long they had to wait for an appointment. A person new to these environments may provide insight on how much navigating and waiting patients may need to do to access care.

Access to treatment becomes more complex if the patient or family is dissatisfied with the care they receive. Resourceful patients know that there are ideally many hospitals and specialists in the area. He or she can request a new doctor, transfer to another hospital or travel to a specialized diagnostic center. However, for patients who do not understand their rights and need a nurse advocate, how would they know to ask for one? Does your system have anything in place to identify patients who might benefit from having a

While the social determinants of health look beyond biology and disease, they do not provide a road map for accessing health care or improving quality.

IMPROVING THE PATIENT EXPERIENCE

What is the CDC Doing to Address Social Determinants of Health?

navigator or advocate? Many patients are trapped by their illnesses and their lack of knowledge and energy. This may prevent them from seeking resources or advocating for the best care, treatment or care team to address their needs.

Access to care can be more complex in outpatient settings. If a patient has an established relationship with a provider, he or she is told when to return for a follow-up visit. However, new patients need to call or make appointments online. Many providers’ offices do not answer their phones. Voicemail instructs callers to leave details to make their appointments: their names, phone numbers, birthdates and the name of the provider they wish to see. Many people spend hours trying to schedule medical appointments.

Some providers are more accessible than others. However, the average wait time for a specialist is 26 days. In the Pacific Northwest, dermatology patients may wait as long as 84 days to see a new dermatologist.8 For patients trying to get an appointment with a cardiologist, the average wait time can be as long as 26 days, while for obstetrics/gynecology, patients may wait an average of 31 days.9

Some large academic centers have found ways to increase access to providers beyond painting directional arrows on hospital floors. Many employ concierges or navigators who use emails or telephone calls to manage a panel of patients. They remind patients about appointments, tell him/her what documents to bring and provide

directions to the clinic. If the person will be having a test, they review pretest guidance. These steps can help make an appointment go more smoothly.

CHANGING RELATIONSHIPS, CLEAR COMMUNICATION

When I was a young nurse, only physicians discussed diagnoses and treatment plans with patients. Patients were not always well-informed. This was before smartphones and the internet. Some physicians were militant in protecting their authority.

I remember a gentleman in his early 50s who had terminal cancer. He was an economist employed by a large bank in Pittsburgh who advised bank managers about the size of their loans based on his assessments and predicted outcomes. As he discussed how he made a living, I saw the irony of his situation: Here was a man who advised large banks about their investments, yet he could not get information about his own illness.

Each day, he asked me about his illness/prognosis. I relayed his questions and his background to his physician, however I was not able to convince the physician to talk with the patient about his illness. While this physician does not represent all providers, he represents an era in medicine when the physician was the captain of the ship. The next time the patient asked me what was wrong, I added to my usual answer, “You have to talk with the doctor.” I asked him what he thought was wrong with him. He said, “I think that I have cancer and do not have long to live.” Not long after that, he died. I thought of him every time I passed a particular restaurant that he had done a loan assessment for prior to his hospital admission.

each other every day. My uncle had been hit by a car in downtown Pittsburgh. He had back pain and was on bed rest at home. My father visited him several times a week. One afternoon when my dad and I were visiting, I noticed a bottle of medicine and recognized the pills as hormones used to treat prostate cancer. When I got home, I called his oldest son, my cousin, and asked if his dad had cancer. He did not answer me, so I asked again. He said, “You know what is wrong with him.” I told him that I would tell my father what I thought was my uncle’s diagnosis. When I told my dad, his eyes filled with tears. He said, “I was afraid of that, I remember Mom and Pop.”

It is less common to keep a serious diagnosis from patients, but power structures and fear of illness or death continue to mar doctor, patient and family communications. Teaching and using effective communication techniques and explaining medical realities clearly need to be an essential part of care.

HUMANIZING CARE

A diabetologist in Washington, D.C., who treated children and adolescents, practiced in three clinics in the district and one in Maryland. Among her patients — many of whom were on insulin pumps — there were striking differences in the socioeconomic status of the children who went to the hospital clinic. Children from families who were poor went to the hospital clinic because they depended on public transportation. Some had to take two or three buses to get to the clinic and were often late to their appointments to have their blood sugar measured.

Some families also withhold information from their loved ones. My father had one brother. Their sisters had died as young girls. My father and his older brother were very close and talked with

Those who were late had to go to the lab to have their blood drawn and then return to the clinic. Most of the clinic doctors would tell the staff to cancel the appointment if the family was more than 10 minutes late. The hospital clinic had a high percentage of Black patients, and canceling appointments created a barrier to care. Canceling appointments did not please the diabetologist, who instead ignored the instructions from the doctors and waited for the patients. It was important to her that the children received appropriate care.

How can care providers help their patients to

How can care providers help their patients to better navigate the health care system? They can begin by trying to listen, understand and adapt to patients’ needs and situations, and to avoid making assumptions.

better navigate the health care system? They can begin by trying to listen, understand and adapt to patients’ needs and situations, and to avoid making assumptions. Additionally, providing better access to care through coherent navigation can be helpful. As noted earlier, concierges, receptionists and clear signage help. However, all providers can review and potentially improve the information and instructions provided on their websites and voicemails. Websites that address commonly asked questions are helpful and can be easily updated.

WE NEED TO CONTINUE TRYING

Decreasing health care costs and improving outcomes requires collaboration among providers, hospitals and clinics, the government (especially members of Congress) and insurance companies. Patients can help by not demanding unnecessary tests, not requesting the newest, most expensive drugs and by taking responsibility for their personal health. Currently, insurers and the government withhold funds from providers, hospitals and patients if the outcomes are not good. What would happen if they were rewarded when costs were decreased and outcomes were improved? Illness and death are part of the life cycle. No matter how hard anyone tries, errors will occur, some bad choices will be made and desired outcomes will not be realized. However, everyone can try. We need to work for strong personal relationships and systemic change to bring about needed improvements.

SR. ROSEMARY DONLEY is a professor of nursing and holds the Jacques Laval Chair for Justice for Vulnerable Populations at Duquesne University School of Nursing in Pittsburgh.

IMPROVING THE PATIENT EXPERIENCE

NOTES

1. Dana P. Goldman and Elizabeth A. McGlynn, U.S. Health Care Facts About Cost, Quality and Access (Santa Monica, CA: RAND Corporation, 2005).

2. “Care Coordination,” Agency for Healthcare Research and Quality, August 2018, https://www.ahrq.gov/ ncepcr/care/coordination.html.

3. Eric C. Schneider et al., “Mirror, Mirror 2021: Reflecting Poorly, Health Care in the U.S. Compared to Other High-Income Countries,” The Commonwealth Fund, August 2021, https://www.commonwealthfund. org/publications/fund-reports/2021/aug/ mirror-mirror-2021-reflecting-poorly.

4. “Hospital Readmissions Reduction Program (HRRP),” Centers for Medicare & Medicaid Services, https://www.cms.gov/medicare/medicarefee-for-service-payment/acuteinpatientpps/ readmissions-reduction-program.

5. “Wound and Ulcer Care,” Centers for Medicare & Medicaid Services, October 7, 2021, https://www. cms.gov/medicare-coverage-database/view/lcd. aspx?lcdid=38902.

6. Richard C. Palmer et al., “Social Determinants of Health: Future Directions for Health Disparities Research,” American Journal of Public Health 109, no. S1 (January 2019): S70–S71, https://pubmed.ncbi.nlm.nih. gov/30699027/.

7. “Social Determinants of Health at CDC,” Centers for Disease Control and Prevention, December 2022, https://www.cdc.gov/about/sdoh/index.html.

8. Sara Heath, “Average Patient Appointment Wait Time Is 26 Days in 2022,” PatientEngagementHIT, September 15, 2022, https://patientengagementhit.com/news/ average-patient-appointment-wait-time-is-26-daysin-2022.

9. Heath, “Average Patient Appointment Wait Time.”

IMPROVING THE PATIENT EXPERIENCE

A Vision for Hope in Catholic Health Care

JOHNNY COX, PhD, BSN Chief Ethics Advisor for the Alliance of Catholic Health Care

Three generations of ministry leaders have been engaged in a struggle to retain the soul of Catholic health care, and the intensity is greater now than ever. They have endured this struggle since the rise of the for-profit health care services sector in the early 1980s, when then-Editor-in-Chief of The New England Journal of Medicine Dr. Arnold S. Relman named and proclaimed the new medical-industrial complex as the most important health care development of the time. He described it as “a large and growing network of private corporations engaged in the business of supplying health-care services to patients for a profit — services heretofore provided by nonprofit institutions or individual practitioners.”1

How dominant has the medical-industrial complex become? Earlier this year, the Institute for Healthcare Improvement’s President Emeritus Dr. Donald M. Berwick lamented the many ways that greed in U.S. health care “is becoming a stranglehold, with dangerous and pervasive consequences.” 2 Could anything other than a dangerous stranglehold have been expected from more than 40 years of medical-industrial complex onslaught?

Thankfully, not all for-profit organizations have succumbed to this worldview, but the deep inroads of the medical-industrial complex throughout U.S. health care are undeniable. Leaders of Catholic health care have mightily resisted

The medical-industrial complex systematically depersonalizes caring and

The medical-industrial complex systematically depersonalizes caring and deprofessionalizes caregivers. Its contracts undermine professional commitments to care for ill or injured persons by prioritizing treatment as a commercial product for consumers with purchasing power. It maintains that competent treatment toward curing disease fulfills occupational obligations while tolerating compassionate caring and healing of persons as nice marketing, but optional.

caregivers. ...

this decades-long, relentless corrosion of healing vocations in clinical practice and administrative leadership. Our superb ministry leadership formation efforts have been in the avant-garde of resistance. Even so, we have not been immune to the poisonous impact of the medical-industrial

deprofessionalizes

It maintains that competent treatment toward curing disease fulfills occupational obligations while tolerating compassionate caring and healing of persons as nice marketing, but optional.

complex. Especially today, after the unprecedented and immense losses and sufferings of the pandemic, we are at particular risk. And the stakes in this struggle extend beyond organizational survival to impacting the very existence of Jesus’ healing ministry within the nation’s commercialized health care industry.

Obviously, the medical-industrial complex targets Catholic health care as it attempts to lure us insidiously into its worldview. In some cases, outside organizations are brought in to “transform” health care or reduce costs, but they may do so without a complete understanding of the mission and values of Catholic health care and the factors that should truly motivate care within it. Why? Because the heart of our ministry, the distinguishing characteristic of our mission, is not so much what we do, but how we do it and for whom. We view all persons equally as children of God.

cal rooms and C-suite executive offices, in the ER and HR, and at the bedside and in the boardroom.

In this struggle, our strongest power is to pay attention to our patients, clients and colleagues — all those whom we serve and with whom we serve — as sisters and brothers. This is the bedrock of Catholic social teaching.

Consistently recognizing each person’s inherent dignity and allowing this recognition to permeate our actions is the melody of our heritage song. This awareness permeates ministry leadership formation, revealing the deepest truths of our communities of caring. Creation, incarnation and redemption revolutionized human consciousness. Every member of our human family radiates the dignity of the divine image. Jesus, our brother in the flesh, saves all his brothers and sisters. Recognizing our interpersonal connectedness and its source is the very taproot of our mission of healing love. Absent this recognition, our ministries would be in dire straits.

The good news is that we can still thwart this threat to our mission. CHA has repeatedly emphasized the urgency of doubling down on our ministry leadership formation endeavors. Members across the ministry have incorporated creative, effective ways to hardwire mission commitments into the key organizational processes of their systems and hospitals. The call of this moment is to reinvigorate the prophetic vision of one another as our sisters and brothers, which is the foundational pillar and wellspring of our mission to heal as Jesus did and does.

RECOGNIZING THE DIGNITY OF ALL

The ministry’s vision is prophetic because it decries and stifles the power of the medicalindustrial juggernaut. This power depends upon reducing caregiving professionals to technical functionaries. Persons with illness and injury are then pursued to profit from their treatment. We are being challenged to sustain our vision in surgi-

Yet, as soon as we see those who are seeking care or swiping the time clock as our brothers and sisters, we will resist the medical-industrial complex’s attempts to depersonalize our ministries. When physicians, nurses and therapists intentionally bring this sensitivity to their history and physical examinations or other assessments, they will establish caring professional relationships. They will also rebel against institutional constraints that obstruct caring and healing. When managers and executives bring this awareness to their hiring interviews and performance appraisals, they will strengthen communities of caring where our healing mission thrives. They will also advocate for policies, procedures and leadership practices that go beyond regulations and economic priorities. A revolution will be underway.

Spiritually and psychologically, it is nearly impossible to look a sister or brother in the eye — to recognize our common bond — and treat them as nothing more than a disease, source of reimbursement or dispensable labor.

So, an antidote to the medical-industrial complex’s poison is to see others as our sisters and brothers, and to recognize their dignity and value. If this sounds too pious, maybe even naïve, beware

Recognizing our interpersonal connectedness and its source is the very taproot of our mission of healing love.

Absent this recognition, our ministries would be in dire straits.

underestimating the power of the Spirit among us.

PAUSE, AND REFLECT ON EACH INDIVIDUAL’S VIRTUE

Even if our view in the ministry may sometimes become fuzzy or blurry, we know our vision can be restored with clear-sighted organizational reform close behind. The ways to sustain our focus are as practical as they are simple.

For instance, when walking from the parking lot or into the workplace, consider the goodness of the individuals you are about to join in a community of compassionate caring. Hesitate just a moment when your phone rings before answering to recognize the voice of a unique child of God. Pause outside the hospital room or nursing station before entering to consider the sisters or brothers you are about to greet. Think twice as you open a chart or personnel file to become acquainted with another member of God’s family. Use “gallery view” at the start of virtual conferences and appointments to scan the uniqueness of your colleagues. Opportunities abound daily.

Practices like these aren’t gimmicks, but they are choices. Each time we choose to put our vision into practice within our ministry activities, we

IMPROVING THE PATIENT EXPERIENCE

create a few moments of focus that initiate relationships of caring or collaboration instead of an impersonal transaction of treatment or function. Soon they become habits that strengthen professionalism and ministry leadership.

Through these practices, our mission thrives and overcomes market-driven forces that cannot withstand healing power. And our vision for hope remains simple, yet so profound.

JOHNNY COX is the chief ethics advisor for the Alliance of Catholic Health Care in Sacramento, California. He received CHA’s Lifetime Achievement Award in 2020.

NOTES

1. Dr. Arnold S. Relman, “The New Medical-Industrial Complex,” The New England Journal of Medicine 303, no. 17 (October 23, 1980): 963-970, https://www.nejm.org/ doi/full/10.1056/NEJM198010233031703.

2. Dr. Donald M. Berwick, “Salve Lucrum: The Existential Threat of Greed in U.S. Health Care,” JAMA 329, no. 8 (February 28, 2023): 629-630, https://doi.org/10.1001/ jama.2023.0846.

Palliative Care and Hospice: How Can We Overcome Barriers to Their Use?

MICHAEL CONNELLY Author and CEO Emeritus of Mercy Health

When treating older adults in the U.S., especially those nearing end-of-life, palliative and hospice care are some of the best options available — yet they remain underused.1

We have roughly 73 million baby boomers in the U.S. today, and many of them have chronic health issues.2 Yet most patients, and even some clinicians, are seemingly unfamiliar with palliative care and what it could do for them.3

And while the general public is relatively more familiar with hospice, that familiarity is often intertwined with falsehoods. In fact, a recent research survey found that 30% of participants thought (albeit incorrectly) that hospice “intentionally hastens death and the dying process.”4

In her book Extreme Measures: Finding A Better Path to the End of Life, Jessica Nutik Zitter, MD, sums it up nicely: Hospice has a “serious marketing problem.”5 Indeed it does, and that marketing problem has real-world consequences. People are afraid of what they don’t understand, and this unfamiliarity has led to an avoidance of hospice and palliative care.

Most Americans are generally aware of hospice care, and the majority of them have a positive impression of it. Seven in ten U.S. residents say they have some familiarity regarding hospice care, including about a third who say they know “a lot.” Among those who say they hold some knowledge about hospice, a large majority (85%) say

they have a positive opinion of it, with almost half (47%) saying their opinion is very positive.6

Nevertheless, for those Americans who are either uninformed, or misinformed, about hospice and palliative care, the root cause of this issue points to five major factors.

CHALLENGES AND MISPERCEPTIONS

1. Everyone Avoids Addressing Death

Individuals, families and physicians can all agree on at least one thing: They do not want to discuss death. The reality of death is so daunting, it’s hard to think about or even discuss, and our collective inability to address it only makes embracing palliative and hospice care more difficult because these treatment options require us to face, or at least acknowledge, our own inevitable end. There are efforts to raise public awareness of the importance of planning for these difficult decisions, such as the Conversation Project,7 and the addition of an advance care planning benefit in Medicare.8 Unfortunately, the U.S. health care system

People are afraid of what they don’t understand, and this unfamiliarity has led to an avoidance of hospice and palliative care.

hardly makes use of these valuable resources.

In addition, the insurance requirement for two physicians to “certify” that a patient will die in six months is absurd.9 There is no clinical evidence to support the idea that a physician can accurately predict death six months out. Furthermore, neither physicians nor patients are comfortable with a definitive statement that they will die in six months. Allowing any patient with a terminal diagnosis, regardless of life expectancy, access to hospice would go a long way to addressing this problem.

Unfortunately, Medicare is set up for the sixmonth requirement because the system deems stays of more than six months as too expensive. Therefore, it targets these stays as fraudulent and an abuse of government funds. But the irony is that the longer a patient stays in hospice, the more money it saves the government. A recent study from the University of Chicago documented that hospice saves Medicare more than $3.5 billion annually. The longer a patient stays in hospice, the more Medicare saves.10

Through new frameworks developed by its piloted Medicare Care Choices Model, the Center for Medicare & Medicaid Innovation is implementing some of the changes to the hospice benefit. The demonstration, which ended in 2021, showed strong results regarding cost savings and patient and family satisfaction among the multiple payment models and demonstrations.11 However, these compelling results have not yet yielded meaningful Medicare policy changes.

2. The Words We Use

Kevin Haselhorst, MD, a retired emergency room physician turned advocate for better endof-life care, believes the language we use around this care contributes to this misunderstanding. For example, the difference between hospice and palliative care is confusing. Likewise, the terms curative care and comfort care add to the confusion. At a foundational level, curative care aims

IMPROVING THE PATIENT EXPERIENCE

to promote recovery from an illness or injury and to cure disease. Comfort care is provided to control pain, alleviate other symptoms and can include greater focus on emotional and spiritual support.12

Here’s a straightforward distinction: Hospice is comfort care without curative intent — the patient no longer has curative options or has chosen not to pursue treatment because the side effects outweigh the benefits. Palliative care is comfort care with or without curative intent.

In an attempt to clarify matters, the Center to Advance Palliative Care conducted a survey in 2019 to demonstrate how specific messages and talking points can improve perceptions around palliative care. Some of the statements that scored well focused on improving life expectancy and providing the best quality of life. Similarly, statements about care that is appropriate for any age or provided as an extra layer of support alongside curative treatment were popular with participants.13

3. Insurance Rules Don’t Align With End-of-Life Care

Generally, insurers do not reimburse for palliative care provided by nonphysicians (the palliative care team consists of several nonphysicians such as nurses, social workers, chaplains and pharmacists). Adding insult to injury, insurers are also stingy in terms of reimbursing the palliative care physicians themselves. Not surprisingly, the outcome of these payment practices is a shortage of palliative care physicians in the U.S.14

Insurance rules hurt hospice because patients are required to give up other Medicare-covered treatments for their terminal illness and related conditions in order to access the hospice benefit. Patients are, of course, afraid of death and are reluctant to give up their options for curative treatment. As a result, patients and physicians avoid pursuing hospice until it’s too late — often delaying until a week or two before death — which significantly diminishes the value of

For CHA’s palliative care resources, visit https://www.chausa.org/palliative/palliative-care.

hospice.15

Evidence suggests that if these insurance rules were changed, patient care would improve and costs would decline, as exhibited by the Medicare Care Choices Model demonstration mentioned earlier.

4. End-of-Life Care Reform Is Ignored

One of the most notable studies in end-of-life care comes from the Institute of Medicine’s 2015 report Dying in America. 16 Developed by a panel of national experts, the report features one quote in particular that succinctly summarizes their recommendations:

“In the end-of-life arena, there are opportunities for savings by avoiding acute care services that patients and families do not want and that are unlikely to benefit them. The committee that produced this report believes these savings would free up funding for relevant supporting services ... that would ensure a better quality of life for people near the end of life and protect and support their families.”

Modern society has lost its fundamental understanding of death, according to a 2022 study in The Lancet 17 A worldwide commission observed that we need to release ourselves from the expectation that in old age we are obligated to fight against death with all that medicine has to offer. They argue that dying today has become a clinical experience, when not too many decades ago it was a family experience. The commission argues that the dying process should be owned by individuals and families, with support from health professionals, instead of the other way around. They go so far as to suggest that medicine has hijacked the dying process.

Finding ways to implement these wise recommendations will require health system changes.18

5. Physicians and Their Roles: Rethinking the Care Approach

In my initial pursuit to discover reforms that would improve health care that led to my recent book, I discovered that transformation would

be best achieved by improving end-of-life care. I have spent five years researching why these end-of-life care reform recommendations are not being adopted, with a primary focus on trying to understand why end-of-life care is not improving. One reason is that modern medicine has a serious problem with physician role clarification. For example, what specialist is in charge of discussing end-of-life care with a patient? No one.

For example, if a patient needs to go on dialysis, shouldn’t they have a palliative care consultation before the nephrology one? Or, if a patient has challenging cancer, shouldn’t the patient have a palliative care consultation? Or, if a patient is in their late 70s or older and is recommended for heart surgery or a pacemaker, would they not benefit from palliative care consultation?

There are some palliative care consultations in inpatient settings. In my experience as a health care executive, these were mainly for patients in intensive care units. But outpatient consultations are rare. This, coupled with the issue of not wanting to address the reality that a patient is dying, results in patients not receiving the full picture of their care choices. It also contributes significantly to fragmented care for older adults.

WE DON’T WANT TO GIVE UP HOPE

The entire health care system allows everyone to avoid facing the big issue: death.

Here are some examples:

We train physicians to view death as failure. In his provocative book, Uncaring , Dr. Robert Pearl describes the physician culture as follows: “For physicians, saving a life is the highest virtue, while losing a patient is tantamount to failure (even when providing more care would have been futile).”20

We pay physicians for treatments and procedures but do not pay them to talk with their patients or discuss with other physicians about their shared patients. The team approach to palliative care relies on care providers having conversations with patients and one another, but the

A worldwide commission observed that we need to release ourselves from the expectation that in old age we are obligated to fight against death with all that medicine has to offer.

health systems’ coding does not allow insurance payments for these critical conversations. Palliative care lacks appropriate reimbursement. Feefor-service medicine poorly compensates nonprocedural specialties like palliative care, resulting in poor access and fragmented care.21

Insurers focus on curative care because they believe health insurance is not intended for comfort care. Therefore, they deem comfort care as not medically necessary. Consequently, insurance companies spend billions of dollars on dialysis, intensive care, transplants and heart procedures, often without questioning whether these measures are considered necessary in cases where a person is near the end of life. However, they seem unwilling to pay for adequate home care, which is less expensive and often more important.

IMPROVING THE PATIENT EXPERIENCE

NOTES

1. Michael D. Connelly, “Code Red (Part 1): Payment Complexity is the Root of All Healthcare Evils,” 4sightHEALTH, June 20, 2023, https://www.4sighthealth.com/ code-red-part-1-payment-complexity-is-the-root-of-allhealthcare-evils/; Signe Peterson Flieger et al., “Lack of Awareness and Common Misconceptions About Palliative Care Among Adults: Insights from a National Survey,” Journal of General Internal Medicine 35, no. 7 (March 2020): 2059-2064, https://doi.org/10.1007/ s11606-020-05730-4.

2. “2020 Census Will Help Policymakers Prepare for the Incoming Wave of Aging Boomers,” United States Census Bureau, December 10, 2019, https://www. census.gov/library/stories/2019/12/by-2030-all-babyboomers-will-be-age-65-or-older.html; “Older Adults More Likely to Have Multiple Health Ailments Than Prior Generations,” PennState Social Science Research Institute, June 22, 2022, https://ssri.psu.edu/news/ older-adults-more-likely-havemultiple-health-ailments-priorgenerations.

3. Connelly, “Code Red (Part 1)”; Flieger et al., “Lack of Awareness and Common Misconceptions.”

There are stiff legal penalties for undertreatment, but not for ignoring an advance directive, the legal document with instructions for medical care if a person becomes unable to communicate his or her choices. Accordingly, physicians err on the side of overtreatment.

One observer compared seeking most specialized care for a frail elderly patient as akin to buying a lottery ticket. The fear of death encourages unrealistic expectations — we don’t want to give up hope. Yet, realism about the end of life is also important. Both individual initiative and systemic change will be needed to reduce the stigma against palliative and hospice care. This includes building better responses for how, where and when this kind of care is provided and reforming the payment systems behind them.

MICHAEL CONNELLY is CEO emeritus of Mercy Health and led the multistate organization from 1995 to 2017. His book The Journey’s End: An Investigation Into Death and Dying in Modern America provides more analysis of these issues and offers solutions for reform.

4. Holly Vossel, “Focus Group Study: 30% Believe Hospice Intentionally Hastens Death,” Hospice News, October 21, 2022, https://hospicenews.com/2022/10/21/ focus-group-study-30-believe-hospice-intentionallyhastens-death/.

5. Dr. Jessica Nutik Zitter, Extreme Measures: Finding a Better Path to the End of Life (New York: Avery, 2017), 352.

6. Liz Hamel, Bryan Wu, and Mollyann Brodie, “Views and Experiences with End-of-Life Medical Care in the U.S.,” KFF, April 27, 2017, https://www.kff.org/report-section/ views-and-experiences-with-end-of-life-medical-carein-the-us-findings/.

7. The Conversation Project, https://theconversation project.org.

8. “Medicare Coverage of Advance Care Planning,” National Council on Aging, April 8, 2019, https://ncoa.org/article/medicare-advance-careplanning.

9. “The Signature Debate,” Hospice Fundamentals, March 2021, https://hospicefundamentals.com/ wp-content/uploads/2021/03/FYI_21_3_ TheSignatureDebate.pdf.

10. “Value of Hospice in Medicare,” NORC at the University of Chicago, March 2023, https://www.nhpco.org/

The fear of death encourages unrealistic expectations — we don’t want to give up hope. Yet, realism about the end of life is also important.

We’ve Got a New Look

wp-content/uploads/Value_Hospice_in_ Medicare.pdf.

11. Jim Parker, “CMMI Working on Payment Models That Include Palliative Care,” Hospice News, October 3, 2022, https:// hospicenews.com/2022/10/03/cmmiworking-on-payment-models-that-includepalliative-care/.

12. “Hospice and Palliative Care: What’s the Difference?”, Catholic Health Association, https://www.chausa.org/docs/ default-source/palliative-care/hospiceand-palliative-care-differences-card. pdf?sfvrsn=9d0fe4f2_4.

13. “Palliative Care Research: Key Findings,” Center to Advance Palliative Care, August 8, 2019, https://www.capc.org/documents/ download/651/.

14. Dale Lupo et al., “The Growing Demand for Hospice and Palliative Medicine Physician: Will the Supply Keep Up?”, Journal of Pain and Symptom Management 55, no. 4 (February 2, 2018): 1216-1223, https://doi.org/10.1016/j.jpainsymman. 2018.01.011.

15. “NHPCO’s New Facts and Figures Report Shows Changes in Hospice Patient

Diagnoses,” National Hospice and Palliative Care Organization, October 28, 2021, https://www.nhpco.org/nhpcos-newfacts-and-figures-report-shows-changes-inhospice-patient-diagnoses/.

16. Institute of Medicine, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (Washington, DC: National Academies Press, 2015).

17. Libby Sallnow et al., “Report of the Lancet Commission on the Value of Death: Bringing Death Back into Life,” The Lancet 399, no. 10327 (February 26, 2022): 837-884, https://doi.org/10.1016/ S0140-6736(21)02314-X.

18. Michael D. Connelly, The Journey’s End: An Investigation of Death and Dying In Modern America (Lanham, Maryland: Rowman & Littlefield, 2023).

19. Pippa Hawley, “Barriers to Access to Palliative Care,” Palliative Care 10 (February 20, 2017): https://doi. org/10.1177/1178224216688887.

20. Dr. Robert Pearl, Uncaring: How the Culture of Medicine Kills Doctors and Patients (New York: PublicAffairs, 2021), 321. 21. Connelly, “Code Red (Part 1).”

Can ‘Extended Reality’ Technology Bring More Humanity to Health Care?

KELLY BILODEAU Contributor to Health Progress

The creators of Radiance, a virtual reality program, initially designed it as a mixed media art piece and displayed it in a Savannah, Georgia, museum.1 Users put on a headset and joined a digital world that featured an immersive light field that showered them with a swarm of glowing particles, all set to music.

“We had so many people wanting to do it, the museum couldn’t keep enough headsets available. They wore them out,” says Teri Yarbrow, immersive reality professor at the Savannah College of Art and Design and one of Radiance’s creators. But the display proved to be more than a source of entertainment. Using layered patterns, geometric designs and ancient iconography, the work was created to conceptualize the connection of all life, but it had an unanticipated effect on attendees. Many said it calmed their fears around mortality. Users described it as a deeply moving spiritual experience that inspired feelings of awe. “I had a number of people that experienced Radiance say to me, ‘I’m not afraid to die now,’” Yarbrow says.

These intense and unexpected emotional reactions sparked the idea of using the program with palliative care and hospice patients at The Steward Center for Palliative Care, also located in Savannah. Its virtual reality program helps patients manage pain and the emotional and spiritual challenges that come with serious, life-changing diagnoses or end-of-life care.

Technology may seem like an unlikely candidate to bring humanity into medicine, but Kathleen Benton, president and CEO of Hospice Savannah, which runs the Steward Center program, says that’s what virtual reality is doing for patients. “We went into VR for pain reduction, and to give our patients a fun experience and something

extra,” Benton says. Through this powerful tool, the program and other areas of health care are exploring opportunities to channel these broad and rapidly-expanding applications into many specialties, from pain management and mental health to physical therapy and medical training.

A NEW ‘ESSENTIAL UTILITY’ ON THE HORIZON

Virtual reality technology isn’t new. It’s been around since the 1960s, says Dr. Mark Zhang, associate chief medical information officer at Brigham and Women’s Hospital in Boston. “But I think there’s been a big surge of interest over the last couple of years.” Virtual reality is included under the broader term extended reality, or, in health care, as Medical Extended Reality. (See sidebar on page 53 for the multiple terms used for virtual reality technologies.) Globally, Medical Extended Reality could become a more than $20 billion market by 2028,2 and Zhang believes it will one day prove as revolutionary as the internet. In coming years, the field will mature, Zhang says. “Just like with smartphones, when that inflection point happens, suddenly it will become an essential utility,” he says.

Today, health care organizations are testing various uses for Medical Extended Reality and collecting data to see how well it can work. There are now nearly 20,000 published research studies on it, with more than 3,000 from 2022 alone,

according to an article on Cedars-Sinai’s website.3 While not all studies show a benefit, many do, and proponents say that Medical Extended Reality not only helps patients clinically, but can bridge gaps in access by providing an in-home option. Insurance doesn’t cover these treatments, but that could change within a year, which could further expand its access, says Dr. Omer Liran, an assistant professor of psychiatry and behavioral neurosciences at Cedars-Sinai Medical Center in Los Angeles.

The field will also get a boost as the technology continues to improve and become more accessible, Liran says. Recently, some heavy hitters moved into the extended reality market, including Apple, with its soon-to-be-released Vision Pro spatial computing device, and Meta, which rolled out its Meta Quest Pro headset last year and pumped $10 billion4 into the virtual reality and artificial intelligence market in 2022.

FROM PATIENT TREATMENT TO MEDICAL TRAINING

One of Medical Extended Reality’s most welltested applications in health care is as a sideeffect-free treatment for pain. In 2021, the FDA approved the first medical virtual reality device to treat chronic lower back pain at home, a prescription device called RelieVRx (formerly EaseVRx). It uses a virtual reality headset, controller and “breathing amplifier” to guide the user through 56 cognitive behavioral therapy sessions that are each two to 16 minutes long. After an eight-week intervention, 66% of patients reported more than a 30% reduction in pain, compared with 41% of people in the control group who also experienced a reduction in pain and used an alternative 2-D system.5

In another study, people recovering from burn injuries who used virtual reality and stan-

dard medication during excruciating wound-care procedures saw a 35–50% reduction in pain, compared with people who took medication alone.6 Experts believe that Medical Extended Reality lessens pain by diverting the brain’s attention, diminishing some of the mental resources it uses to process pain signals.7 It can make medical procedures easier for both adults and children and lessen or eliminate the need for pain medications, including opioids.

Medical Extended Reality also has an established track record in mental health, treating anxiety, post-traumatic stress disorder and phobias, says Dr. Jose Ferrer Costa, a clinical team leader in Barcelona, Spain, of the XR Medical and Health Care team for Educators in VR. The technology is also becoming a cornerstone of medical training, allowing doctors and other clinicians to practice complex procedures safely in a virtual world. Medical Extended Reality, paired with artificial intelligence (AI) algorithms, can create experiences that are both realistic and interactive.

For example, AI can enable conversations with virtual avatars or enhance training by creating true-to-life patient scenarios. “The technology is being used to plan major surgeries collaboratively,” Zhang says. It can also guide procedures. Augmented reality layers medical images onto the patient’s body, for example, overlaying the image of a tumor on the surgical field, to make sure the surgeon doesn’t leave remnants behind, he says.

Medical Extended Reality is also finding utility as a diagnostic tool — for example, a headset to perform specialized vision tests — and makes it possible for people to work together, remotely. “There’s a company that’s essentially building a virtual radiology reading room. So, instead of spending money on an immovable high-fidelity reading room, you can actually do most reads in a

UNDERSTANDING VIRTUAL REALITY TERMINOLOGY

When people talk about virtual reality technologies, you might hear them referred to by various names. Below is a guide to explain the differences:

Virtual reality (VR) immerses the user in a simulated digital world.

Augmented reality (AR) puts a digital overlay on top of a real-world view. The smartphone game Pokémon GO is an example of AR. Digital characters are added to a real-world camera view.

Mixed reality (MR) blends the real and digital worlds and allows the two to interact.

Extended Reality (XR) is the umbrella term that covers all of these different technologies.

Medical Extended Reality (MXR) refers to all these applications as they are used in health care.

virtual space using a portable headset,” Zhang says. But the technology’s benefits aren’t only clinical. Sometimes described as an “empathy machine,” Medical Extended Reality enables clinicians to feel what their patients feel, including what it’s like to have certain medical conditions or impairments or to receive bad news, Zhang says. This can help doctors improve communication. Ferrer Costa is also testing virtual reality as a means of preventing burnout in stressed-out health care workers using a system that teaches emotional management strategies, such as mindfulness techniques.

Medical Extended Reality also has immense potential in geriatric, palliative and end-of-life care. The Steward Center for Palliative Care invites often-bedridden patients to take bucket list trips or adventures — such as dipping into the sea with a pod of dolphins or skydiving — says Yarbrow. One Alzheimer’s patient, a music lover, got a front-row seat alongside the orchestra at a Beethoven concert. After one session, the woman, who sometimes struggled to remember her own name, spontaneously played songs she once knew on the piano, Yarbrow says. These interventions can improve quality of life and reduce loneliness and anxiety.

Medical Extended Reality programs like Radiance also help people tap into the complex emotion of awe. “Awe is the feeling you get when you take a walk out in nature and see that you’re just a small piece of this universe,” Benton says. Scientists studying this emotion say people who experience awe reap a host of benefits, including a sense of connectedness, mood improvements and even physical changes, such as a decrease in markers of chronic inflammation.8 Awe-inspiring virtual reality trips help people feel like they are part of something much larger and can make them less fearful of death. “These are people who are held

hostage by their bed and their disease, and we’re able to achieve awe for them,” Benton says.

BRIDGING ACCESS GAPS

Medical Extended Reality could also be a valuable tool to compensate for the staffing shortages plaguing health care. The technology can be used at home, giving it a unique power to reach those who might otherwise go without treatment. “VR has the opportunity to touch patients that do not have ready access to the health care system,” says Dr. Lindsey Ross, an assistant professor of neurosurgery and spine specialist at Cedars-Sinai Medical Center. “We currently have a study that tests the use of VR in rural communities. VR has the ability to not only bridge gaps in health care where location is a barrier, but also may be the key to addressing health care issues where there may be a shortage of providers, such as mental health care, obesity medicine or physical and occupational therapies.”

The need is particularly acute, and likely to worsen, in mental health care. “Right now, there is a huge shortage of mental health workers, especially in the United States, but really everywhere. And this is one solution to deliver that care not in clinics, but in people’s homes,” Liran says. While virtual reality isn’t yet on par with a visit to the therapist, Liran says they are working to improve the experience. Once the technology matures, some people might still prefer to work one-onone with a professional, he says. “But right now, half of Americans don’t have that choice,” he says. If they don’t have access to a therapist, they have few other resources. Virtual reality will give them an option.

PUTTING GUARDRAILS IN PLACE

Overall, Medical Extended Reality use in health care is still spotty and driven mainly by early

Awe-inspiring virtual reality trips help people feel like they are part of something much larger and can make them less fearful of death. “These are people who are held hostage by their bed and their disease, and we’re able to achieve awe for them,” Kathleen Benton says.

adopters — those who were impressed by the technology and found ways to put it into practice. Zhang says that as the leader of the Brigham Digital Innovation Hub, which is part of the Mass General Brigham health system, he looked to see how the technology was being used at the organization and discovered 30-plus independent research projects. Zhang’s team has since worked to build a collaborative Medical Extended Reality community at Mass General Brigham, which lead him to a larger mission. “I realized that the same kind of issues we were seeing within our system were replicated across the entire nation and the industry as a whole,” he says. This pushed him to establish a professional society for the technology, the American Medical Extended Reality Association (AMXRA). He now serves as its president and founder. The interprofessional, nonprofit medical society aims to create a central hub for information and education on Medical Extended Reality and to set professional standards around it. Zhang says a medical journal for this technology is also in the works to provide a central source for research.

While he’s a big advocate for Extended Reality technology, Zhang says it’s also important to proceed into this new field with a touch of skepticism.

“Part of the reason why we’re creating AMXRA is to have an independent, nonindustry-sponsored group that’s able to advocate and to help create some of these guidelines, and to have an impartial perspective on the field as a whole,” he says. “People need to consider the implications of using the technology.” This means understanding how it’s best used and potential drawbacks. With technology also comes concerns about privacy and security. “That’s going to be another piece that’s going to be interesting to navigate,” Zhang says. “This is at the early stages, and we’re building the foundations to hopefully try to address this. I don’t think there’s going to be a magic bullet. I think it’s going to take many years. But I don’t think that’s a reason not to start, because we have to start.”

Ultimately, he sees the shift into the virtual world as an inevitable change that needs to be managed well to fulfill its potential. It’s critical to ensure equitable access across different groups, some of whom will need help to make that leap into the digital world, Ross says. “Older patients or patients with less access to technology may feel like VR is not for them,” she says. Establishing an education program, building trustworthy referral networks and using culturally-inclusive materials can help to open the technology to more people.

A patient at Cedars-Sinai Medical Center in Los Angeles uses a virtual reality headset as part of their care.

Photo courtesy of Cedars-Sinai

By ensuring everyone has access to the digital world, health care and patients will be better positioned to reap its future benefits.

KELLY BILODEAU is a freelance writer who specializes in health care and the pharmaceutical industry. She is the former executive editor of Harvard Women’s Health Watch. Her work has also appeared in The Washington Post, Boston magazine and numerous health care publications.

NOTES

1. Radiance exhibited at the Jepson Center in Savannah, Georgia, in 2018: https://www.telfair.org/exhibitions/ radiance.

2. “Healthcare Extended Reality Market: Global Industry Trends, Share, Size, Growth, Opportunity and Forecast 2023-2028,” IMARC, https://www.imarcgroup.com/ healthcare-extended-reality-market.

3. “vMed23: How Virtual Reality is Transforming Medicine,” Cedars-Sinai, April 10, 2023, https://www.cedars-sinai.org/newsroom/

QUESTIONS FOR DISCUSSION

vmed23-how-virtual-reality-is-transforming-medicine/.

4. Andrew R. Chow, “A Year Ago, Facebook Pivoted to the Metaverse. Was It Worth It?,” TIME, October 27, 2022, https://time.com/6225617/ facebook-metaverse-anniversary-vr/.

5. “FDA Authorizes Marketing of Virtual Reality System for Chronic Pain Reduction,” U.S. Food and Drug Administration, November 16, 2021, https://www.fda.gov/ news-events/press-announcements/fda-authorizesmarketing-virtual-reality-system-chronic-painreduction.

6. Hunter G. Hoffman et al., “Virtual Reality as an Adjunctive Non-Pharmacologic Analgesic for Acute Burn Pain during Medical Procedures,” Annals of Behavioral Medicine 41, no. 2 (April 2011): 183-191, https://doi.org/10.1007/s12160-010-9248-7.

7. Greg Lavine, “Using Virtual Reality to Treat Real Pain,” National Institutes of Health HEAL Initiative, https://heal.nih.gov/news/stories/virtual-reality.

8. Summer Allen, “The Science of Awe,” Greater Good Science Center, September 2018, https://ggsc.berkeley. edu/images/uploads/GGSC-JTF_White_Paper-Awe_ FINAL.pdf.

Hearing about the different technologies involved in Medical Extended Reality raises a lot of interest and questions about how it is currently being used in medicine and what the future holds. Author Kelly Bilodeau describes some of the approaches and programs being used around the country.

1. While some of these approaches, like the ability to communicate and share information in virtual environments may provide for more specificity than a phone call or a communication over a laptop, do you have concerns about what these practices mean for the healing strength of presence and touch? How can such technology better serve human interactions?

2. Did reading this article make you think of therapies or interventions in your work that could be delivered through virtual or augmented reality? Is there any mechanism in your health care environment to share ideas or to voice interest for further training in these areas?

3. This article discusses the feeling of awe, and how some sick people or those with limited mobility report experiencing awe when immersed in a visual and sound experience that transports them. Are you able to take time or have experiences that bring you a feeling of awe? How can opportunities for awe be more likely in your everyday life?

4. As a mission-driven ministry, what opportunities do you see for the use of Medical Extended Reality in our call to provide for the spiritual, emotional and mental well-being of patients? How might related treatment options support patients as they may be facing their own mortality, contemplating the existence of God or considering what lies beyond their physical lives?

CHA’S VISION STATEMENT: A CLOSER LOOK

This past summer, CHA’s Board of Trustees adopted a new vision statement: We Will Empower Bold Change to Elevate Human Flourishing. The vision statement will guide the development of CHA’s new Fiscal Year 2024-26 strategic plan.

Headed by a six-person committee from the CHA board, the creation and adoption of the vision statement took more than nine months and included input from hundreds of CHA stakeholders.

During this visioning process, CHA used quantitative and qualitative surveys, conducted one-on-one interviews, convened focus groups with key constituents and dedicated hours of discussions with CHA board members. The result was a nine-word statement that succinctly describes CHA’s aspirations and goals for how we are called to serve in the years ahead.

SO WHY CREATE A VISION STATEMENT NOW?

The simple answer could be “because of COVID.” But the need for a new vision statement is about more than addressing the lasting implications of the pandemic. The numerous challenges facing health care providers in the U.S. — including severe financial distress and workforce shortages, coupled with more extensive societal disruptions, such as political polarization, environmental degradation and the rapid use of artificial intelligence — require us to do things differently. Our new vision statement is therefore a necessary articulation of a future state for Catholic health care.

WHAT IS THE MEANING BEHIND THE NINE WORDS?

As someone who has spent my career as a communicator, I have a deep appreciation for the power of words. I’m also a firm believer that when

it comes to effectively conveying a message, a concise perspective on language is often the best approach — less is indeed more. And as the process of developing the statement unfolded, it was clear that every word was needed to powerfully express the meaning and intent of our vision.

To gain a deeper understanding of CHA’s new vision statement, it’s helpful to look at it in three distinct parts: “we”; “empower bold change”; and “elevate human flourishing.”

We

The basic definition of “we” simply describes more than one person. However, it can be viewed as shorthand for the more general and universal definition of “Catholic.” We know that we are all in this together, and the vision statement’s first word recognizes this reality of our collective human experience. “We” speaks to the power of CHA members coming together to effect meaningful change. It calls us to align with others of goodwill outside the membership, including our patients, community leaders, government officials and those serving within the Catholic Church. “We” beckons us to explore and enter into new partnerships that can help us achieve our vision.

Cynthia BentzenMercer, founder and CEO of Bentzen Performance

BRIAN REARDON

“We” speaks to the power of CHA members coming together to effect meaningful change. It calls us to align with others of goodwill outside the membership, including our patients, community leaders, government officials and those serving within the Catholic Church.

Partners, who most recently served as executive vice president and chief administrative officer for Mercy, is a former CHA board member who served on the vision committee. She reminded us that the use of “we” is about being inclusive and is necessary to expand relationships and partnerships to bring the vision to life.

Empower Bold Change

During the many discussions about the statement, there was quite a bit of debate about the word “empower,” but a strong consensus about the need for “bold change.”

One definition of “empower” is “to authorize.” It can also mean “to make stronger.” This sec ond meaning is the intended use of the word in our vision statement. CHA and our members recognize that our collective voice is powerful. Achieving bold change is going to be a heavy lift, however drawing from our combined strength, we can work together to make it happen.

Nearly everyone who offered input on the vision statement agreed that the status quo for U.S. health care is untenable, and incremental progress is simply not enough to bring about meaningful change. There is a deep desire to bring about systemic shifts necessary for a more equitable and just health care funding system. The goal is to create a health care system that is sustainable, encourages innovation, promotes shared responsibility among all stakeholders and ensures that health care is a human right for everyone, including a focus on those who are low-income and vulnerable. As Tina Weatherwax-Grant, JD, senior vice president for public policy and advocacy at Trinity Health — who also served on the board vision committee — said, “Bold change means radically changing systems. Bold is transformational. It’s not merely incremental or even transitional. It’s moving.”

Human Flourishing

An early theme that emerged during the discern-

ment process was that the work must be “of God.” In Gospel teachings, and those of saints such as Thomas Aquinas, we are reminded that “human flourishing” is what God intends for each of us. Another collaborator who served on the vision committee was recent board member Dougal Hewitt, executive vice president/chief mission and sponsorship officer of Providence St. Joseph Health. When reflecting on this aspect of the vision statement, he simply reminded us that “there’s that commitment not only to have life but to have it more abundantly.”

Human flourishing, therefore, can be viewed as the desired outcome for our vision statement. This goal is also reflected in CHA’s seven core commitments from our Shared Statement of Identity for the Catholic Health Ministry, which are:

Promote and Defend Human Dignity

Attend to the Whole Person

Care for Poor and Vulnerable Persons

Promote the Common Good

Act on Behalf of Justice

Steward Resources

Serve as a Ministry of the Church

These core commitments have served as rallying cries for our health care ministry and are powerful reminders that we are responsible for carrying the legacy of our founders.

Within CHA, we’ve talked at length about what human flourishing means and what we must do to truly elevate it. We know an individual’s health is directly affected by the well-being of everyone, and so promoting the common good and attending to the whole person must be viewed as inseparable. We also have the benefit of Catholic social teaching, which underscores the importance of promoting and defending human dignity and caring for those who are poor and vulnerable.

A COMPASS FOR THE FUTURE

Throughout the board visioning process,

participants were reminded by Laura Kaiser, president and CEO of SSM Health and past chair of CHA’s board, that a vision statement should serve as a compass for our collective efforts. The work underway within CHA is to create a road map for our future by developing and adopting a new threeyear strategic plan. As with past strategic plans, the road map will set a course and identify markers to gauge our progress. The nine words from our vision statement, and the distinct parts I’ve just identified, will help identify whom we will invite to come along for the ride, how fast and courageously we want to travel, and where we want to arrive down the road as we continue the mission of Catholic health care.

Fahad Tahir, president and CEO of Ascension Saint Thomas and ministry market executive for Ascension Tennessee, who also served on the board vision committee, summed it up best when he explained that the vision statement “is uniquely important, both because of the voice of who’s speaking at CHA, and also the moment we find ourselves in. When you step back and really hear the words, ‘We will empower bold change to elevate human flourishing,’ it speaks to both the needs of our time and the moral and systematic leadership that we are called to serve.” Tahir added that the work of bringing our vision to life “will be energizing. The achievement will be exhilarating and must be worthy of our best efforts.”

A related podcast and additional details about CHA's vision statement are available at https://www.chausa.org/about/ vision-statement.

BRIAN REARDON is vice president of communications and marketing for the Catholic Health Association, St. Louis.

U.S. Postal Service

STATEMENT OF OWNERSHIP, MANAGEMENT AND CIRCULATION (Required by 39 U.S.C. 3685)

1. Title of publication: Health Progress

2. Publication number: 0882-1577

3. Date of filing: September 7, 2023

4. Issue frequency: Quarterly

5. No. of issues published annually: 4

6. Annual subscription price: free to members, $29 for nonmembers

7. Location of known office of publication: 4455 Woodson Rd., St. Louis, MO 63134-3797

8. Location of headquarters of general business offices of the publisher: 4455 Woodson Rd., St. Louis, MO 63134-3797

9. Names and complete addresses of publisher, editor and managing editor: Catholic Health Association, Publisher; Betsy Taylor, Editor; Charlotte Kelley, Managing Editor; 4455 Woodson Rd., St. Louis, MO 63134-3797

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I certify that the statements made by me above are correct and complete.

Betsy Taylor, Editor

MENTAL HEALTH ADVOCACY: MUCH ACCOMPLISHED, BUT MUCH LEFT TO DO

Improving the availability and quality of mental and behavioral health services remains one of the most challenging aspects of health policy and advocacy in the United States. While Congress has passed several pieces of legislation over the last 20 years to improve access and coverage for mental health, these services remain out of reach for far too many Americans. Even for those with access to mental and behavioral health, the stigma attached to them keeps many from seeking the help they need. For those who work to improve the system and provide access to everyone who needs mental and behavioral health services, particularly low-income and other vulnerable populations, mental health advocacy — along with raising awareness around the problem — remains a top priority.

The Catholic health ministry recognizes that supportive and readily available mental health services and substance use disorder treatments are essential facets of holistic, person-centered and effective health care.

The first principle in CHA’s Vision for U.S. Health Care affirms our call to pay special attention to those most likely to lack access to health care, many of whom are in desperate need of mental health and substance abuse services. 1 This commitment is why we strongly support efforts to increase access to these services and ensure that they become fully integrated into our health care system. CHA has been at the forefront of these efforts for many years, and mental health remains one of the Catholic health ministry’s key priorities in our advocacy agenda for the 118th Congress.2

ADVANCING ACCESS TO MENTAL HEALTH CARE

As we move into the middle of the 118th Congress, we can celebrate some important advances in advocacy work and public awareness that have occurred over the past few years. Two bills approved during the last Congress — the Bipartisan Safer Communities Act and the Fiscal Year 2023 Omnibus Appropriations Bill — contained many

important mental and behavioral health provisions that addressed some of Catholic health care’s advocacy priorities. The urgency of the global COVID-19 pandemic, combined with the mental health concerns related to gun violence in the U.S., helped push Congress to act and approve these bills.

The Bipartisan Safer Communities Act was approved by the 117th Congress and became law in June 2022. While the main thrust of the bill was an effort to address gun violence, it also contained several provisions related to mental and behavioral health. The law provides resources to increase options for mental telehealth, particularly in Medicaid and the Children’s Health Insurance Program (CHIP). Telehealth options were greatly expanded during the pandemic to meet the needs of those who could not seek care in person, and mental telehealth options remain a pivotal aspect in improving care options for those in areas without easy access to mental health professionals. In addition, it provides a way to access care without the stigma often attached to in-person appointments. This legislation also provided funding and resources for school-based mental and behavioral health programs, as mental health for children and adolescents has become a focus of particular concern in public policy.

The Consolidated Appropriations Act of 2023 (or “Omnibus”) was passed at the very end of the

CLAY O’DELL

last Congress. In addition to reauthorizing vital mental and behavioral health programs, this legislation also addressed several key advocacy priorities for Catholic health providers, including measures to enforce parity between physical and mental health services; reimbursement in the Medicare program for licensed mental health counselors, marriage and family therapists, and for intensive outpatient services often required for mental and behavioral health treatment programs; investments to increase the mental and behavioral health workforce; and extending telehealth flexibilities through the end of 2024.

Many of the provisions in the omnibus had been outlined in work groups formed by the Senate Finance Committee in 2022 to offer legislative suggestions to improve mental health services based on information gathered from stakeholders. Catholic mental health providers participated in the process of gathering information for the Finance Committee and played a key role in advancing the committee’s mental health agenda throughout the year.

BREAKING STIGMAS, RAISING AWARENESS

Reducing the stigma associated with mental and behavioral health services and raising awareness of their benefits is as much a part of our advocacy efforts as seeking legislative solutions to improve access and care. Great strides have also been made in this area over the past few years, including the introduction of the 988 mental health hotline. This free service — which consolidated various state and local help hotlines into one number available nationwide — officially launched more than a year ago. The 988 service has already been credited with helping to raise awareness of the availability of mental health and drug treatment programs and services, as well as increasing outreach to those in need of suicide prevention. Funding for the 988 initiative and for local mobile mental health crisis units was included in the legislation passed last year, and these programs are helping to move the response to mental health and substance use disorder crises away from law enforcement and into clinical outreach and settings.

Even as we celebrate these accomplishments and all the tremendous work done by mental and behavioral health providers working in Catholic health care, we acknowledge how much more remains to be done in this area. For providers, the lack of capacity and workforce to treat all those needing mental and behavioral health services remains the greatest challenge.3 While legislative solutions to increase capacity and workforce have been long discussed, they invariably involve ensuring adequate reimbursement across the payment mix of programs and well-funded outreach and programs to attract new mental health professionals.

In short, these proposed solutions would require funding at a time when many in Congress and elsewhere are demanding cuts in government spending. But in addition to our mission to help and heal everyone regardless of cost, providers working in Catholic health care also know that shortchanging investments in this care is a pennywise and pound-foolish strategy that inevitably leads to more significant monetary and human costs down the road. We will continue to advocate the Catholic health ministry’s mental and behavioral health priorities regardless of the obstacles ahead because the price of leaving them undone is far too great.

CLAY O’DELL, PhD, is director of advocacy for the Catholic Health Association, Washington, D.C.

NOTES

1. “More than 4 in 10 U.S. Adults Who Needed Substance Use and Mental Health Care Did Not Get Treatment,” National Council for Mental Wellbeing, https://www. thenationalcouncil.org/news/more-than-4-in-10-usadults-who-needed-substance-use-and-mental-healthcare-did-not-get-treatment/.

2. “Advocacy Agenda 2023-2024 (118th Congress),” Catholic Health Association, https://www.chausa.org/ advocacy/advocacy-agenda.

3. “New Study: Behavioral Health Workforce Shortage Will Negatively Impact Society,” National Council for Mental Wellbeing, https://www.thenationalcouncil.org/ news/help-wanted/.

‘NURSING HOMES ARE PEOPLE’S HOMES’

NATIONAL COALITION PUTS RESIDENTS’ NEEDS FRONT AND CENTER

“Quality of life? To have a newspaper and a cup of hot coffee in the morning — decent coffee. But I’m just not able to get it.” —Nursing home resident

“The resident council is a lifeline for resident support.”

— Nursing home resident

“We are not just people giving baths. We become someone’s family, their friend. We learn about who they are, where they are from and who is important to them.”

—Certified nursing assistant (CNA)

When was the last time you went to a nursing home, either as a visitor, resident, legislator, provider or researcher? For many people, the answer is, “Never” or, “I can’t remember.”

The quotes above are a snapshot of feedback that the Moving Forward Nursing Home Quality Coalition1 — a national association focused on improving the quality of care and life in nursing homes — heard from nursing home residents, CNAs and others over the past year. Historically, nursing homes are often overlooked, misunderstood or not seen as a vital part of America’s health care system. Nursing home residents often express a sense of social isolation and being disconnected from the greater community, an issue that has added stress to staff to take further measures to prevent this seclusion.2 With more than a million people living in more than 15,000 certified nursing facilities across the country, there is growing interest from the current administration, local leaders and the public to change this dynamic.3

IDENTIFIED WEAKNESSES AND OPPORTUNITIES

Many hold health care systems in high regard in

terms of quality and reliability. However, health services research and government reports on nursing home quality over the years have identified weaknesses and opportunities to improve quality of life and safety for nursing home residents.4

As part of the National Academies of Sciences, Engineering and Medicine’s 2022 report The National Imperative to Improve Nursing Home Quality, the report panel concluded, “… the way in which the United States finances, delivers and regulates care in nursing home settings is ineffective, inefficient, fragmented and unsustainable.”5

In addition to the report, recent findings have further highlighted the need for adequate nurse (RN and LPN) and CNA staffing 6; an enhanced nursing home survey/inspection process 7; and other changes in nursing homes. Because these are complex, interrelated issues, approaches need to address them both individually and as a set.

One thing is certain: Nursing homes are peo-

ALICE BONNER, PhD, RN, and SUMIRE MAKI

ple’s homes. Individuals may live there for a few months to several years. In surveys conducted by the Institute for Healthcare Improvement, residents say they need more than just health care. Residents want to live in an environment that supports socialization and interactions that include staff members, others who care about them and activities and food that they enjoy.8

MOVING FORWARD TO SIGNIFICANT CHANGE

So how can we collectively take action to bring forth meaningful change?

In line with its mission to make vital changes in policy and practice through the power of bringing diverse voices together, the Moving Forward Nursing Home Quality Coalition convened — starting in July 2022 — to review recommendations from the National Academies of Sciences, Engineering and Medicine’s report. Its focus was to set forth actionable steps to improve nursing home quality while ensuring equity and cultural diversity.

Funded by The John A. Hartford Foundation, with additional support from Columbia University School of Nursing and the Johns Hopkins University School of Nursing, the coalition formed seven committees around seven priorities from the National Academies of Sciences, Engineering and Medicine’s report, launched a website and built partnerships with federal and state leaders, nursing home providers, advocates and others.

Throughout these discussions, committee members asked themselves two questions: 1) What can be done in the next year? and 2) What is the most important thing within this category that we could accomplish?

Working committees developed and refined a total of nine action plans (see box on this page), including how to turn recommendations into meaningful and sustainable activities in nursing homes, cities, towns and local communities.

Some action plans focus primarily on practice changes — for example, how to ask individuals about their goals, preferences and priorities when they are admitted to the nursing home. Other plans focus on policy changes, such as increasing financial incentives for nursing home owners so that more nursing homes may convert to household or small home models.

The coalition has also begun working with

Moving Forward’s Nine Action Plans

The Moving Forward Coalition developed nine action plans drawing from particular challenges facing nursing homes, explained why they are important to residents’ quality of life, defined focused goals to address those challenges and provided the steps the coalition will take to achieve them over a year. The plans relate to:

Addressing residents’ goals, preferences and priorities

Strengthening resident councils

Improving certified nursing assistant wages and support

Expanding certified nursing assistant career pathways

Enhancing surveyor training on person-centered care

Designing a targeted nursing home recertification survey

Increasing transparency and accountability of ownership data

Developing a nursing home health information technology readiness guide

Financing household models and physical plant improvements

Action plan details are at https://movingforwardcoalition.org/wp-content/ uploads/2023/07/Action-Plans_Complete-Set.pdf.

multiple states (Pennsylvania, Michigan and others) to create or expand state-based teams focused on nursing home quality issues and opportunities. These teams will work closely with the national coalition to focus on each state’s crucial nursing home and community issues, and how one or more of the nine action plans may be adopted or modified to meet the needs of nursing home residents and workers in that state.

GOING BEYOND THE DISCUSSIONS

These action plans give us new opportunities to bring additional individuals and organizations into the coalition and state teams, particularly as our work unfolds over the coming months. By reviewing these action plans, nursing home teams can explore how to get further involved in the national movement to improve quality of life for residents. Year 2 began in July, and the coalition’s next steps are detailed in each action plan with goals, timelines and key partners.

Regardless of individual living situations, quality of life for nursing home residents is an issue that affects all of us. Most people will spend time in a nursing home during their life, or someone close to them will live in a nursing home at some point. Our nation must address long-overdue issues related to residents’ quality of life, staff working conditions and finance reform. We must move beyond writing white papers and reports and take action in our local communities now.

The Moving Forward Nursing Home Quality Coalition holds regular webinars for anyone interested in learning more about the coalition and its action plans. To learn more about these webinars, visit https://movingforwardcoalition.org/takingaction/.

ALICE BONNER is chair of the Moving Forward Coalition and senior advisor for aging at the Institute for Healthcare Improvement. SUMIRE MAKI is program manager for the Moving Forward Coalition.

NOTES

1. Moving Forward Nursing Home Quality Coalition, https://movingforwardcoalition.org.

2. Diana Lynn Woods et al., “Social Isolation and Nursing Leadership in Long-Term Care: Moving Forward after COVID-19,” Nursing Clinics of North America 57, no. 2 (June 2022): 273–286, https://doi.org/10.1016/j. cnur.2022.02.009.

3. “Providers & Service Use Indicators: Nursing Facilities,” KFF, https://www.kff.org/state-category/ providers-service-use/nursing-facilities/.

4. Weiwen Ng et al., “Quality of Life Scores for Nursing Home Residents Are Stable over Time: Evidence from Minnesota,” Journal of Aging & Social Policy 34, no. 5 (January 12, 2022): 755–768, https://doi.org/10 .1080/08959420.2021.2022949; Christine A. Mueller et al., “Calling All Nurses—Now Is the Time to Take Action on Improving the Quality of Care in Nursing Homes,” Nursing Outlook 71, no. 1 (January 2023): https://doi.org/10.1016/j.outlook.2022.11.001; Pi-lu Liu, Eilon Caspi, and Ching-Wei Cheng, “Complaints Matter: Seriousness of Elder Mistreatment Citations in Nursing Homes Nationwide,” Journal of Applied Gerontology 41, no. 4 (September 4, 2021): 908–917, https://doi. org/10.1177/07334648211043063.

5. National Academies of Sciences, Engineering, and Medicine et al., The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff (Washington, DC: National Academies Press, 2022).

6. Dana B. Mukamel, Debra Saliba, and Heather Ladd, “Association of Staffing Instability with Quality of Nursing Home Care,” JAMA Network Open 6, no. 1 (January 10, 2023): 2574-3805, https://doi.org/10.1001/ jamanetworkopen.2022.50389; Eric Jutkowitz et al., “Effects of Nurse Staffing on Resident Outcomes in Nursing Homes: A Systematic Review,” Journal of the American Medical Directors Association 24, no. 1 (January 2023): 75–81, https://doi.org/10.1016/ j.jamda.2022.11.002.

7. David G. Stevenson and Audrey K. Cheng, “Nursing Home Oversight during the COVID-19 Pandemic,” Journal of the American Geriatrics Society 69, no. 4 (April 2021): 850–860, https://doi.org/10.1111/jgs.17047.

8. “Age-Friendly Health Systems,” Institute for Healthcare Improvement, https://ihi.org/agefriendly/.

THE POWER OF BLESSING: AN ANCIENT APPROACH TO A CULTURE OF BELONGING

In Catholic health care, the integration of mission, vision and values across the continuum of care is our distinction. It is what creates our culture and sets us apart for both our staff and patients. The manner in which we look after patients and serve together steadies our commitments and differentiates the care we provide. Recent years have highlighted the importance of belonging in workplaces and communities.1 Diversity, equity and inclusion efforts have expanded, as the positive effects of belonging on well-being continue to gain traction. The human need to belong is universal, and the workplace is no exception, heightening its relevance to individual well-being and enhancing patient care.

As a Catholic health ministry called by CHA’s new vision statement to “empower bold change to elevate human flourishing,” we must explore strategies to foster belonging. What will strengthen efforts toward belonging? And how might we uplift our core beliefs of belonging that plunge into the essence of this profound human need? I propose there is a gift at the heart of belonging that lies within our faith tradition. Illuminating this special grace will allow us to achieve our radical vision with coworkers and, more importantly, our patients and the communities we serve.

BLESSING IN FAITH TRADITION

The Christian faith tradition is rooted in blessing. From the dawn of time, God’s pattern around this emerged: The blessed bestows blessings upon others so that they, too, may do the same for others. This chain of blessing is replete throughout sacred scripture. As Genesis begins, God creates living beings, blesses them and gives them instructions on how to continue as the blessed: “Be fertile, multiply … fill the earth … .” (Genesis 1:22, 28) The narrative continues as God calls Abram and establishes a divine covenant with him, bestowing him with the name Abraham and the promise of an everlasting covenant with him and

his descendants, a blessing of radical proportions. (Genesis 17:1-9)

While blessing in the Hebrew text denotes lineage and land, a deeper human aspect is evident. This thread is visible in Isaac and Esau (Genesis 27:1-40), in Jacob (Genesis 32:22-30), in Moses and Aaron (Numbers 6:22-27) and in Jabez (1 Chronicles 4:10). Look closely. It seems scripture illuminates soul-deep expressions of humanity to receive blessing, common displays that people long to be assured of their worth and to be seen and known by a trusted figure — ultimately, God — for a divine affirmation. Biblical scholar Ellen Davis defines blessing as “fundamentally an act of acknowledging the essential goodness of the other’s being. It is a commitment of one’s will to the flourishing of the other.”2 Psychological theorists name this connection belonging; we call it blessing.

BLESSING IN SACRED MOMENTS

In his book To Bless the Space Between Us, John O’Donohue portrays the pervasive sense of blessing that enveloped daily life in Ireland. This sentiment was captured in the practice of etching crosses onto bread dough, infusing basic nourishment with a spiritual meaning. On St. Brigid’s Eve, affixing crosses to home ceilings symbolized a prayerful shield of protection.

Additionally, the observance of Candlemas — which commemorates the presentation of Jesus at the temple — on February 2 held a profound

JILL FISK

role in Irish culture. During this commemoration, residents offered their wax candles to the priest. These candles, once consecrated, burned throughout the year, serving as tangible emblems of grace in times of adversity. This practice fused the sacred and the ordinary, as the flickering flames offered a constant reminder of blessing.3

Perhaps this culture of blessing influenced the origin of the Blessing of the Hands. Attributed to Florence Nightingale in the 1800s, this ritual still reminds caregivers of their call to offer compassion to those they serve. I distinctly recall my first Blessing of the Hands as a graduate intern at St. Louis-based Mercy. As the fragrant oil was imprinted upon each new leader’s hands, accompanied by a whispered blessing, I found myself captivated by the sacramentality in the vocational commissioning and felt the sense of divine affirmation among all in the room.

This sentiment personally resonates in profound ways. In 2016, I facilitated a workshop on Sabbath practice for ministry leaders, inviting them to embrace regular rhythms of rest and relationship as an act of worship. Those in the room asked if they could pray over me before the presentation began. The simple photograph of that moment now rests on my office bookshelf as a touchstone of my call to serve and God’s blessing over me. O’Donohue’s writing suggests an “infusion of sacred power” in objects like this photograph, transforming them to be “the power of sacred blessing into the future … a live sanctuary from which the divine light and protection proceed … penetrated and benevolently permeated by the breath of blessing.”4

BLESSED TO BE A BLESSING

Moments of blessing transport us to a place of being known and affirmed by the One in whom our desires begin and find completion. This is the great gift of faith upon psychological constructs of belonging. When we look to our faith tradition and the meaning-making rituals that shape our own call, we can find a viable strategy for belonging.

The first step to engage in blessing is to experience it. Are there sacred moments you have previously experienced upon which you can reflect — in your life or community of faith? Is there, or might there be, an opportunity to receive a ritual of blessing within your facility or system? If so,

make it a practice to relive and remember God’s affirmation on your life.

Second, surround yourself with reminders of this blessing. Is there a touchstone that symbolizes your life and work as a blessing for others that you can place in a space you frequent, possibly your office, kitchen or car? Set yourself up to remember who and of whom you are.

Finally, establish rhythms of blessing that return you to blessing day after day:

Count the blessings that emerge in everyday moments of grace.

Slow down to savor the blessing of others. Be truly present. Set aside agendas and distractions. Listen with the ear of blessing. Let its power be transformative.

Linger over blessings found in sacred text and wisdom literature and meditate upon them throughout the day. Repeat them word by word, line by line. Let these words of blessing inform your life and all those you encounter.

As writer and theologian Henri Nouwen said, “To give someone a blessing is the most significant affirmation we can offer. It is more than a word of praise or appreciation; it is more than pointing out someone’s talents or good deeds; it is more than putting someone in the light. To give a blessing is to affirm, to say ‘yes’ to a person’s Belovedness.”5 We are blessed to be a blessing. This is our strategy for belonging.

JILL FISK, MATM, is director, mission services, for the Catholic Health Association, St. Louis.

NOTES

1. William Arruda, “How to Cultivate A Culture of Belonging — and Why It’s the Ultimate Competitive Edge,” Forbes, March 1, 2023, https://www.forbes.com/sites/ williamarruda/2023/03/01/how-to-cultivate-a-cultureof-belonging-and-why-its-the-ultimate-competitiveedge/?sh=462f6b8b5d37.

2. Eileen F. Davis, Opening Israel’s Scripture (New York: Oxford University Press, 2019).

3. John O’Donohue, To Bless the Space Between Us: A Book of Blessings (New York: Doubleday Press, 2008).

4. O’Donohue, To Bless the Space Between Us

5. Henri Nouwen, Life of the Beloved: Spiritual Living in a Secular World (New York: The Crossroad Publishing Company, 1992).

GLOW PROGRAM’S REGIONAL APPROACH ROUTES PEOPLE TO EFFECTIVE CARE

Agroundbreaking community-based initiative in Longview, Texas, is gaining local, state and national recognition in its mission to reduce the need for use of emergency acute care services by high-risk community members. Through a grant awarded by the Episcopal Health Foundation, Greater Longview Optimal Wellness (GLOW) was established in 2021 to improve access to health and wellness services for the community.

The mission of GLOW is to identify frequent users of acute emergency services (for example, 911 and emergency departments) for nonemergent purposes and develop a strategy for streamlining the navigation of community organization services. GLOW hopes to alleviate unmet needs by addressing social determinants of health and using community health paramedicine. For instance, Longview has a paramedicine worker, licensed as both a paramedic and a registered nurse, who provides thorough assessments and interventions in the field. This initiative has proven to be no easy task, but results so far have garnered the attention of state and national representatives to better understand this work and its challenges.

A WILLINGNESS TO DISRUPT THE STATUS QUO

CHRISTUS Good Shepherd Health System in Longview is one of eight community partners that make up the GLOW initiative. Other partner members include the city of Longview, Gregg County, Greater Longview United Way, Community Healthcore, Special Health Resources of Texas, Wellness Pointe and Longview Regional Medical Center. All partner organizations have equal representation on the GLOW steering committee, and an executive leader from each partner organization forms the governing board.

Amy Hooten, Longview Fire Department’s EMS section chief and GLOW Steering Committee chair, has been a speaker at state and federal engagements in Austin and Washington, D.C.,

about GLOW’s work, the importance of its mission, current barriers and how Texas' six Accountable Communities for Health — organizations that coordinate on health care and social needs in a region — can provide pathways to address social determinants of health.

On the surface, the mission is simple, but there are many caveats that have required out-of-thebox approaches and a willingness to disrupt the status quo. The first challenge of GLOW was to establish an overall vision of how the grant could be put to its best use in our community, engage partners that could make it happen and create models for effective patient-level communication across entities.

Initial work-plan brainstorming centered on how to best use the grant to meet the needs of vulnerable populations, improve wellness, better understand the impact of social determinants of health, and be responsible stewards to our community and funders. With the unique perspective of each partner organization, GLOW is meeting the challenges of these goals.

UNDERSTANDING COMMUNITY USE AND IMPACT

Initial research for GLOW included determining how to define and identify high utilizers and understand the impact on the community. Research showed approximately 50 individuals in the community had accessed 911 services for nonemergent needs at least eight times in the most recent 12 months. Using an average of this data,

AMIE COCKRELL, RN, MBA-HCM, CPHQ

it was determined that each call to 911 equated to approximately $1,500 of tax-payer funding for EMS response (not considering additional costs for related emergency department visits). Initial case studies showed patrons had difficulty understanding and navigating outpatient services, had social determinants of health that created barriers to accessing needed services, and responded favorably when community partners collaborated with their consent and on their behalf.

Each partner organization has been encouraged to develop internal workflow models to identify patrons enrolled in the GLOW program, develop a list of services offered by their agency applicable to the targeted populations and create processes that expedite interventions (for example, use of teleservices, creation of sameday/next-day appointments, transportation assistance, etc.). The GLOW work model is pivotal for all partner agencies communicating and working together.

Once the vision and mission were defined, the main challenge was to determine how organizations could advocate and communicate using patient-level details while still adhering to HIPAA regulations. This was done by creating a single consent form that includes all partner agencies. After high-utilizing patrons are identified, any partner organization can explain the program and ask if the patient would like to complete the consent with all partner agencies.

GLOW is also implementing the use of technology to facilitate streamlined communication on behalf of patrons. Through the use of a HIPAA-compliant, secure and easy-to-use application, teams across organizations can be united to provide a single unified patient communication channel. All partner organizations have access to the software program with the ability to alert each other on patient encounters and can then bring partner organizations to assist the patient, as needed.

For example, for a patient that has provided signed consent, if they arrive at the emergency department — but are in need of services better offered by a partner organization — the care team in the emergency department can add that specific partner agency to the patient’s channel in the app to alert them of the encounter. From there, the department can then communicate with that partner to coordinate care with the patient going

forward. This allows partners to collaborate on the patient’s behalf to ensure adherence to care plans, proactively mitigate potential barriers (for example, transportation needs, prescription assistance and more) and improve awareness of social determinants of health that may factor into overall health and wellness. The implementation of a secure, interorganizational communication application has been key in streamlining communication and is an integral part of GLOW’s success.

HARDWIRING WORKFLOW PROCESSES

Closing in on its second full grant program year, GLOW’s goals have centered on hardwiring workflow processes within each partner agency. Steps in the GLOW protocol are as follows:

1. Referral is received by the city of Longview staff supporting GLOW.

2. A report is created with the EMS electronic platform.

3. The GLOW coordinator reviews the report and activates GLOW.

4. Consent process is initiated.

5. Baseline screening using a tool to assess and measure nonmedical drivers of health.

6. A patient care record is created, priority of intervention determined from the nonmedical drivers of health screening instrument, and approved by the community health paramedic.

7. Individualized interventions are initiated for the GLOW participant.

Each partner must determine how patients will be identified as patrons of GLOW, and how their internal workflows can be amended to best meet individualized interventions needed for the GLOW participant. In initial case studies, interventions have included providing points of daily contact with the community health paramedicine nurse, arranging for medications, establishing patients with primary health care providers, providing transportation to follow-up appointments, facilitating contact with family members, arranging placement into long-term care facilities and connecting patients with mental health services. Early data shows these targeted interventions have the potential to decrease nonemergency use of acute care services by over half in these at-risk populations. Furthermore, due to the governing structure and funding supporting involved part-

ners, patients are routed to the organization that can best support their needs, regardless of the patient’s ability to pay. This structure allows for equitable care for patients.

To better understand the impact of GLOW from initial data provided in case studies, the Episcopal Health Foundation expanded the initial grant to fund a formal research study through the University of Texas at Tyler. The study is being processed through the university and partner agency internal review boards. The study will aim to identify interventions that are most effective in mitigating 911 calls, admissions to the hospital and perceived positive impacts on the health and well-being of GLOW participants based on preand post-nonmedical drivers of health screening scores. With this data, the program will define the business case for other potential funders. By having a clear understanding of the return on investment and financial impact on insurance companies and community members, GLOW can progress beyond the initial grant into a model for sustainable funding.

GAINING MOMENTUM FOR THE FUTURE

As the work of GLOW continues to gain recognition and results, Aetna CVS Health offered a grant to fund multiple nursing schools throughout the East Texas region to help with the work of GLOW. With this assistance, local nursing school programs can incorporate a clinical experience

into the curriculum of mental health and population health courses. Through these partnerships, nursing students gain clinical hours by shadowing with the GLOW coordinator, the community health paramedicine nurse, hospital case managers and other partner organization personnel. In this capacity, the student nurses are trained in completing nonmedical drivers of health assessments and become well-acclimated with services offered by partners and community organizations. This relationship is mutually beneficial in both expanding the knowledge of students about the benefits and challenges of population health and in expanding the work and reach of GLOW.

While GLOW is still somewhat new, the response and engagement within the community have been extremely positive. This is attributable to the executive leadership of each partner organization committing to the mission of GLOW and supporting collaboration over competition.

The devastation to health care entities during the COVID-19 pandemic is well-known, but for Longview this proved to be an opportunity to highlight the abilities of community service organizations to form purposeful partnerships, setting a firm foundation for the success of GLOW in the years to come.

AMIE COCKRELL is the director of quality management for CHRISTUS Good Shepherd Health System in Longview, Texas.

EMBRACING NEW PERSPECTIVES CAN LEAD TO TRANSFORMATION

Have you ever experienced a moment when firmly held beliefs were challenged, and you saw the world through a different lens? In theology, this transformation is known as a “hermeneutic of experience.” It involves gaining new insights that allow us to interpret our experiences in a more accurate way. Theologian Bernard Cooke describes a hermeneutic of experience in his seminal book Sacraments and Sacramentality as “a set of principles, insights and critical judgments that equips us to interpret our experience in a more accurate and more profound way.”1 For Cooke, we encounter not only ourselves and other people through our experiences, but more importantly, we encounter the divine.

Through these real-world experiences, we better understand our reality as well as the Holy Spirit’s involvement within it. Experiences — much like the official sacraments of the Church — reveal to us God’s participation in our world. As ministers of Christ’s healing presence today, we can learn not only from Jesus’ example in scripture, but just as importantly, we can learn through the experiences of healers through the centuries. By reflecting on the encounters of those who work in health care, we gain better insight into the extraordinary work of the healing ministry.

SHIFTING PERSPECTIVES

The transformative power of a hermeneutical experience can be better explained through two real-life stories that highlight how individuals’ perspectives can evolve over time.

During a conversation over coffee, a friend shared an experience from his practice as an oncologist. He narrated the story of a once-prominent business leader and philanthropist who had been battling cancer for several months. Initially, the patient demanded aggressive treatments, hoping for a cure. However, as medical interventions

failed repeatedly, frustration and anger began to fill the patient’s heart. Soon, there were no more treatments to be tried. As days progressed, the patient began valuing different aspects of life, such as time with family and telling stories to his grandchildren. This shift in mindset, which my friend had witnessed in other patients as well, revealed a deeper realization: that success was not solely measured by worldly possessions. This shift demonstrates a hermeneutic shift.

After the conversation with my friend, I went back through articles which I return to often. One is written by Ann Naffziger about working in a parish ministry in Oregon in the 1990s. She describes an experience she had while shopping for groceries with a Latina mother and her baby in her article in America: The Jesuit Review magazine:

“As I sat on the bench outside the Safeway store holding close the dark-haired, dark-skinned baby boy, I was conscious of the long stares I was receiving, the questioning looks of incomprehension shot at me by the mostly Anglo shoppers. What was I, a young white woman, doing rocking and cooing to this Hispanic boy and playing with his two-year-old sister next to us, their mother and father nowhere to be seen?”2

Initially, Naffziger never envisioned working with undocumented immigrants, despite her fa-

NATHANIEL BLANTON HIBNER

ther’s legal career providing pro bono assistance to immigrants and asylum seekers. As a child, she experienced a sense of unease toward the people her father helped, feeling that their route was unfair to those who followed legal immigration processes. However, when Naffziger began her ministry work in Oregon, her perspective on immigration took an unexpected turn. The mother in the story was a client of Naffziger, who, like the hundreds before, helped change the way she viewed immigration and those who crossed our borders to seek a better life.

Encountering undocumented immigrants in her role as coordinator of the emergency assistance office at her parish — which offered community members help to meet basic needs — opened Naffziger’s eyes to their hardships and struggles, transforming her initial feelings of unease into empathy and gratitude. These individuals became her teachers, helping her recognize the goodness and generosity that could emerge from even the most challenging circumstances. Her hermeneutic of experience shifted from judgment to love, as she discovered the potential for transformation and growth that existed within herself.

Encountering undocumented immigrants in her role as coordinator of the emergency assistance office at her parish

Naffziger’s evolving perspective led her to reflect on the biblical notion of helping “aliens,” reframing the term “alien” to encompass the shared experience of being strangers in a foreign land. This reinterpretation helped her embrace a more inclusive and compassionate outlook on immigration issues. The once-unsettling word “alien” now symbolized the commonality that binds all human beings, our ability to transcend borders and to overcome differences.

UNLOCKING PERSONAL GROWTH

The power of a hermeneutic of experience lies in its ability to shape and reshape our worldview. Both the oncology patient’s journey and Naffziger’s transformation serve as reminders that encountering diverse experiences can lead to profound personal growth. As we become more open to understanding the perspectives of others, we gain a deeper appreciation for the diversity and interconnectedness of humanity.

Embracing a hermeneutic of experience that values our journey through life will reveal to us a better understanding of who we are and how we participate in God’s creation. Beyond the truths uncovered in the great works of theology and philosophy, Cooke and these stories remind us that God became human. In knowing the human experience more deeply, we can also know God more deeply.

As we continue to work in the ministry of health care, we are invited to pause, reflect and discern on the experiences we have each day. What happened today that might expand our own knowledge? What encounters this week revealed something new? It is in these questions that we can grow and become closer to our Creator.

NATHANIEL BLANTON HIBNER, PhD, is senior director, ethics, for the Catholic Health Association, St. Louis.

NOTES

1. Bernard Cooke, Sacraments and Sacramentality (New London, CT: Twenty-Third Publications, 1994), 33.

2. Ann Naffziger, “Transforming Work,” America: The Jesuit Review, June 21, 1997.

— which offered community members help to meet basic needs — opened Ann Naffziger’s eyes to their hardships and struggles, transforming her initial feelings of unease into empathy and gratitude.

Blessing the Change in Season

REV. DAVID J. EBACHER, MA, BCC

CHAPLAIN SUPERVISOR, THE JEWISH HOSPITAL — MERCY HEALTH, CINCINNATI

KARLA KEPPEL, MA

MISSION PROJECT COORDINATOR, CATHOLIC HEALTH ASSOCIATION, ST. LOUIS

REFLECTION

Blessed are you, autumn, chalice of transformation, you lift a cup of death to our lips and we taste new life.

Blessed are you, autumn, season of the heart’s yearning, you usher us into places of mystery and, like the leaves, we fall trustingly into eternal, unseen hands.

— An Autumn Blessing1

Autumn is a liminal space. Beautiful in its own right, it gently leads us to the darkness of winter. It is a space between life and death. As authors Joyce Rupp and Macrina Wiederkehr articulate, “The mood of autumn is the ebb and flow of life. Autumn stands as an epiphany to the truth that all things are passing and even in the passing there is beauty.”2

For many, autumn recalls feelings of nostalgia, memories of years gone by, back-to-school blues and the glee of children jumping in leaf piles. Indeed, the season is significant for many faith traditions. Not only do Catholics commemorate All Saints Day during this time on November 1, but Hindus celebrate Diwali on November 12, a festival of lights, and those who practice Judaism celebrate Sukkot in the fall, which honors both the harvest and hospitality. There are also distinct recognitions of the change in seasons in other faith traditions. No one is exempt from witnessing and participating in the “season of the heart’s yearning.” While we receive and experience it differently based

on our worldview, we “fall trustingly” together. We experience together the shorter days and appreciate together the golden glow of autumnal light. Even as we perhaps dread the coming darkness of winter, our experience is softened by being held in community. As you prepare to pray — and as we listen to this well-known scriptural passage — consider your own feelings toward the change in seasons. What do you need in this appointed time as you prepare your mind and spirit for the transition to autumn?

Let us pray.

READING

A reading from the Book of Ecclesiastes. (Ecc. 3:1-8)

There is an appointed time for everything, and a time for every affair under the heavens. A time to give birth, and a time to die; a time to plant, and a time to uproot the plant. A time to kill, and a time to heal; a time to tear down, and a time to build. A time to weep, and a time to laugh; a time to mourn, and a time to dance. A time to scatter stones, and a time to gather them; a time to embrace, and a time to be far from embraces. A time to seek, and a time to lose; a time to keep, and a time to cast away. A time to rend, and a time to sew; a time to be silent, and a time to speak. A time to love, and a time to hate; a time of war, and a time of peace.

QUESTIONS FOR REFLECTION

Let us pause and reflect on the following:

How are you experiencing the “liminal space,” the blessing of this transitional season?

Are there personal “dyings” you are undergoing that will give way to experiences of new life?

How do the holy days in your religious tradition lend meaning to your current season of life?

CLOSING PRAYER

Holy One, Blessed Grace: As we come to You in sacred space during this autumn season, we find ourselves in a darkening time of transition. We seek Your light and take inventory of the spiritual harvest over the past year.

We give You thanks for such blessings, as it also serves as a reminder of how You cared for us all along the way.

It is Your light that we need as we look to the future with hope and anticipation. With the holy days of the season drawing near, we look forward to the opportunities to celebrate You in our communities. May this be a blessed time that draws us closer to You this season and always.

Peace be with you, shalom, as-salaam-alaikum, and namaste.

NOTES

1. Joyce Rupp and Macrina Wiederkehr, The Circle of Life: The Heart’s Journey through the Seasons (Notre Dame, IN: Ave Maria Press, 2005).

2. Rupp and Wiederkehr, The Circle of Life

COMMUNITY BENEFIT 101: THE NUTS AND BOLTS OF PLANNING AND REPORTING COMMUNITY BENEFIT

“The information about the CHNA and CHIP was so essential and will be invaluable in my role.”

CHA’s Community Benefit 101: The Nuts and Bolts of Planning and Reporting Community Benefit, a virtual conference, will provide new community benefit professionals and others who want to learn about community benefit with the foundational knowledge and tools needed to run effective community benefit programs.

Attendees will receive a copy of CHA’s A Guide for Planning and Reporting Community Benefit.

What you will learn:

Taught by community benefit leaders, the program will cover what counts as community benefit; how to plan, evaluate and report on community benefit programs; accounting principles and a public policy update.

Who should attend:

 New community benefit professionals who want a comprehensive overview of all aspects of community benefit programming.

 Staff in mission, finance/tax, population health, strategic planning, diversity and inclusion, communications, government relations and compliance who want to learn about the important relationship of their work and community benefit/community health.

 Veteran community benefit staff who want a refresher course to update them on current practices and inspire future activities.

“CHA has great resources that were used as part of the program, and I can already use the information presented in my day-to-day activities.”

— Program Participant

— Program Participant

AVAILABLE ON- DEMAND AND LIVE

Leaders in Catholic health care recognize the crucial importance of formation in ensuring the Catholic identity of our ministries. In response to member needs, CHA is offering Foundations On-Demand as a sister program to Foundations Live.

Foundations On-Demand

ALWAYS AVAILABLE

✦ Ideal for new leaders who miss scheduled formation opportunities. The program is also for those who have difficulty getting away from their work to attend a scheduled program.

DIALOGUE PARTNER

✦ A local dialogue partner supports On-Demand participants as they work at their own pace.

Foundations Live

JANUARY 30 — MARCH 21, 2024

✦ Foundations Live is an interactive eight-week (virtual) program with sessions each Thursday from 1–3:30 p.m. ET

BUILD COMMUNITY

✦ Engage in meaningful dialogue with ministry colleagues from your system and across the country.

LEARN MORE ABOUT BOTH PROGRAMS AND REGISTER AT CHAUSA.ORG/FOUNDATIONS