San Francisco Marin Medicine, Vol. #94, No. 4, OCTOBER/NOVEMBER/DECEMBER 2021

SAN FRANCISCO MARIN MEDICINE J O U R NA L O F T H E S A N F R A N C I S C O M A R I N M E D I CA L S O C I E T Y

PALLIATIVE CARE ADVANCES AND REFLECTIONS: Supporting Patients and Families for the Road Ahead Volume 94, Number 4 | OCTOBER/NOVEMBER/DECEMBER 2021

2

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

SAN FRANCISCO MARIN MEDICINE

IN THIS ISSUE

October/November/December 2021 Volume 94, Number 4

FEATURE ARTICLES 8

Pediatric Palliative Care and the Cure for Medicine Efrat Lelkes, MD

10 New and Improved Advance Care Planning: Making it Easier for Patients and Clinicians Rebecca Sudore, MD 12 Grief on Fire Kai Romero, MD

14 Pandemic to Pandemic: A Career in Palliative Care Steven Pantilat, MD 16 The Benefit of Hospice Dawn Gross, MD, PhD 18

Universal Palliative Care—The MERI Center's Vision for Education in Palliative Care Redwing Keyssar, RN; Gayle Kojimoto, BA; Judy Long, BCC and Michael W. Rabow, MD

20 Some Myths About Medical Aid in Dying: What Have

We Learned at the Bedside?

Lonny Shavelson, MD

22 Racial Disparities in Palliative Care: Can We Be Honest?

Vanessa Grubbs, MD, MPH

26 Palliative Care and Our Community

Victor Kwok, MD and Joseph Woo, MD

28 Reconciliation: A Practice in Letting Go

Kissiah Young, MSW

30 Amazing Grace in Navajo Nation

Jessi Humphreys, MD

31 Palliative Aesthetics: Finding Our Way Into the Eye

of the Beholder

BJ Miller, MD 32 Community Approach to Advance Care Planning

and Palliative Care in San Francisco

Jeffrey Newman, MD, MPH 33 Storytelling in Palliative Care

Monique Schaulis, MD, MPH, FAAHPM

34 SFMMS Interview: Alex Smith and Eric Widera, Hosts

of GeriPal Podcast

Monique Schaulis, MD, MPH, FAAHPM 36 The Respect Project

Scott Schmidt, MD

37 Legalizing "Obstetrics of the Soul" in California

Steve Heilig, MPH

24

Discussing the Unspeakable: Serious Illness with Aging Chinese Parents Esther J. Luo, MD; Sandy Chen Stokes, RN, MSN and Deborah A. Szto, MSN, RN, CCRN

OF INTEREST

MONTHLY COLUMNS

7

2021 SFMMS Election Results

2

Membership Matters

5

President's Message Monique Schaulis, MD, MPH, FAAHPM

15 SFMMS Book Review: "Pearls From the Practice"

by John Chuck, MD

Richard S. Issacs, MD, FACS 44 Advertiser Index

COMMUNITY NEWS 41 Kaiser News Maria Ansari, MD

41 Kaiser Permanente San Rafael Naveen Kumar, MD WWW.SFMMS.ORG

39 A Day I Wish We Didn't Need

Jessie Mahoney, MD

6

7

Executive Memo Conrad Amenta

CMA House of Delegates Report Michael Schrader, MD, PhD

SAN FRANCISCO

MARIN MEDICAL SOCIETY

Editorial and Advertising Offices: San Francisco Marin Medical Society 312 Sutter, Suite 608 SF, CA 94108 Phone: (415) 561-0850 Web: www.sfmms.org

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

1

MEMBERSHIP MATTERS SFMMS/CMA Distributes Over $500k to Local Practices for Vaccinatons We are delighted to announce that 40 practices in San Francisco and Marin County that have now received $500,000 in #CalVaxGrant funds! Funding supports physician practices in becoming vaccination sites. Physicians for a Healthy California > Programs > CalVaxGrant (phcdocs.org).

DEADLINE: December 17, 2021, at 11:59 p.m. (PT)

San Francisco and Marin Public Health Alerts: Health issues and conditions are evolving so rapidly in these times that publication in our quarterly journal is simply not timely enough. Physicians are encouraged – sometimes required – to check regular alerts from the health departments. Most recent important alerts include COVID boosters and influenza vaccination. To see and subscribe to such alerts, see: San Francisco: Health Alerts - Disease Prevention and Control, San Francisco Department of Public Health (sfcdcp.org) Marin: Information for Healthcare Providers (https://www.marinhhs.org/content/public-health-updates)

CMA-sponsored law requires payors to cover cost of COVID-19 testing and vaccine admin

Ensuring physicians can administer tests and vaccines is critical to putting the COVID-19 pandemic behind us. This is why the California Medical Association (CMA) sponsored legislation (SB 510) that requires health plans and insurers to cover COVID-19 testing and vaccinations during the pandemic without barriers like patient cost-sharing or prior authorizations.

2

Last day to change your Medicare participation status for 2022 is December 31 It’s that time of year again—time for physicians to decide if they want to make changes to their Medicare participation status.

Physicians have until December 31, 2021, to make changes for the 2022 participation year. The effective date for any changes made will be January 1, 2022. CMS recently released the final fee schedule and policies for next year.

SFMMS Offers Free PPE Masks

A supply of quality N95 and KN95 masks are available from the SFMMS, courtesy of funding from the California Health Care Foundation. Dozens of local physicians have availed themselves of this free resource, picked up in central San Francisco. For info: Steve Heilig at Heilig@sfmms.org

COVER ART "Leelanau County Road” oil on canvas, 2016 Courtesy of Catherine Dunn dunnc@sidwell.edu 240/925-2515

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

October/November/December 2021

RESOURCE CORNER:

Volume 94, Number 2

UPCOMING SFMMS WELLNESS EVENTS The physician driven Wellness Committee provides a variety of offerings focused on nourishing our members through social, educational, and professional development events. Ongoing offerings include:

Mindful Yoga for Healers

A monthly weekend offering of free Mindful Yoga for Healers. This is specifically for SFMMS members to join their colleagues in order to heal, replenish, restore, and connect! Sign up at https://mindfulyoga. jessiemahoneymd.com/ to be notified of class dates and times.

Culinary Medicine

A quarterly Culinary Medicine session with local physician chefs. During these sessions, the physician chefs share healthy recipes, culinary medicine concepts and demonstrate cooking techniques for our SFMMS physician members on their culinary medicine journeys.

Women and Parents in Medicine Sessions

Quarterly sessions for SFMMS members that alternate between Women in Medicine discussion topics for those members who identify as women or Parents in Medicine sessions for members to discuss parenting techniques, while balancing work as a physician.

Book Club

A quarterly book club for SFMMS members. Each quarter, participants choose a new book, usually written by local physicians. Past books include, “God’s Hotel” by Dr. Victoria Sweet and “Together” by Dr. Vivek Murthy. The winter 2022 Book Club book will be “My Lovely Wife in the Psych Ward: A Memoir” by Mark Lukach. SFMMS Members who register for the Book Club receive a free copy of that quarter’s book. For more information, contact Director of Engagement, Molly Baldridge at mbaldridge@sfmms.org. For direct links and to register for upcoming events, visit the SFMMS Wellness Page at www.sfmms.org/get-help/ physician-wellness.

In September, the SFMMS Book Club discussed "The Boy, the Mole, the Fox and the Horse" by Charlie Mackesy. “Inspiration and hope in uncertain times in this beautiful book, following the tale of a curious boy, a greedy mole, a wary fox and a wise horse who find themselves together in sometimes difficult terrain, sharing their greatest fears and biggest discoveries about vulnerability, kindness, hope, friendship and love. The shared adventures and important conversations between the four friends are full of life lessons that have connected with readers of all ages.” For more information or to join the SFMMS Book Club, contact Director of Engagement, Molly Baldridge, at mbaldridge@sfmms.org.

WWW.SFMMS.ORG

Editor Gordon L. Fung, MD, PhD, FACC, FACP Managing Editor Steve Heilig, MPH Production Maureen Erwin EDITORIAL BOARD Editor Gordon L. Fung, MD, PhD, FACC, FACP Tonie Brayer, MD Linda Clever, MD Anne Cummings, MD Irina DeFischer, MD Shieva Khayam-Bashi, MD John Maa, MD David Pating, MD SFMMS OFFICERS President Monique Schaulis, MD, MPH President-elect Michael C. Schrader, MD, PhD, FACP Secretary Dennis Song, MD, DDS Treasurer Heyman Oo, MD, MPH Immediate Past President Brian Grady, MD SFMMS STAFF Executive Director Conrad Amenta Associate Executive Director, Public Health and Education Steve Heilig, MPH Director of Operations and Governance Ian Knox Director of Engagement Molly Baldridge, MPH Staff Associate Ashley Coskey 2021 SFMMS BOARD OF DIRECTORS Edward Alfrey, MD Ayanna Bennett, MD Julie Bokser, MD Keith Chamberlin, MD Anne Cummings, MD Nida F. Degesys, MD Manal Elkarra, MD Beth Griffiths, MD Robert A. Harvey, MD Harrison Hines, MD Zarah Iqbal, MD Michael K. Kwok, MD Jason R. Nau, MD Sarita Satpathy, MD Kristen Swann, MD Kenneth Tai, MD Melanie Thompson, DO Winnie Tong, MD Matthew D. Willis, MD, MPH Joseph W. Woo, MD Andrea Yeung, MD

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

3

4

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

PRESIDENT’S MESSAGE Monique Schaulis, MD, MPH, FAAHPM

PALLIATIVE MEDICINE Over the years, quite a few people have said with puzzled looks, “You do Emergency and Palliative Medicine? Aren’t those polar opposites?”

I chose to train in Emergency Medicine in the late 1990s as a way to be there for patients in the most dire situations. I became proficient at resuscitation and occasionally performed lifesaving procedures. But once I left Alameda County’s Highland Hospital, I discovered that outside of desperately underresourced communities, Emergency Medicine can be less dramatic. Unsurprisingly, when people have access to education, healthy food, good jobs, and solid preventive care, they don’t come in on death's door so often. Instead, diseases like cancer or substance use disorder are often prevented or diagnosed at an earlier stage, diabetes and hypertension are addressed, and patients don’t die nearly so young.

My current patients at Kaiser usually grow old, and with time, accumulate multiple chronic illnesses like congestive heart failure, CKD, COPD, cancer, dementia, and frailty. Their emergency visits are frequently for complications, like sepsis or trauma, that accompany chronic illness. In the decade after I trained, I admitted so many patients like this to the hospital but most seemed to cycle in and out of the ER, hospital and nursing facilities. I worried that under these circumstances I wasn’t healing anyone, and indeed it seemed that my treatments and the hospital sometimes worsened their suffering. Something just didn’t feel right and I knew I needed some different skills.

My search led me to Palliative Medicine. This new (to me) medical tribe taught me another language and culture. I learned ways to leave my agenda aside and compassionately listen, to discuss serious illness and dying, to elicit patient and family values, to help to plan realistically for the future, and provide an extra layer of support. I also grew to appreciate the power of an interdisciplinary team including chaplaincy, nursing, and social work.

Many people, even physicians, don’t truly understand what the Palliative Medicine specialty does. This doesn’t surprise me because it is so multifaceted. In a day on the inpatient team, I might work with a patient on strategies to address pain or constipation, and with the next patient discuss how to talk about cancer with children. We might weigh the pros/cons of starting or stopping dialysis, or think through options for a culturally appropriate board and care facility versus home caregiving.

Palliative medicine is an incredibly broad field; the constant is providing the extra support that patients and families need.

I had hoped to help host a SFMMS palliative medicine conference this fall but organizing it during the pandemic made me want to tear my hair out repeatedly. Instead, we share this journal issue dedicated to the specialty that I hope will showcase its depth, breadth and creativity. We have such an amazing community of palliative care innovators and leaders here in the Bay Area who have graciously shared their time and expertise.

Enjoy!

Monique

Dr. Monique Schaulis, MD, MPH, FAAHPM, is a graduate of the University of Chicago Pritzker School of Medicine. She practices Emergency and Palliative Medicine with The Permanente Medical Group in San Francisco. She is President of SFMMS and serves as faculty for Vital Talk, a non-profit that teaches communication skills for serious illness. Dr. Schaulis chairs the Medical Aid in Dying special interest group for the American Academy of Hospice and Palliative Medicine.

Greetings to all at the end of yet another most challenging year. In our last issue, we focused on addiction medicine as a relatively new, and entirely essential subspecialty and focus deserving of much wider attention across many medical specialties and settings. This time, with similar intent, our focus is palliative care. We are fortunate to have so many of the leaders in this field here in our local area—and in this issue of our journal, thanks largely to our 2021 SFMMS president Monique Schaulis. We hope you will find their offerings stimulating and enlightening, and we wish everyone a truly rewarding and restful holiday season.

– The Editors WWW.SFMMS.ORG

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

5

EXECUTIVE MEMO Conrad Amenta, SFMMS Executive Director

Dear Physicians: 2021 has been a challenging and rewarding year for the physicians of San Francisco and Marin counties. Our members leaned into their values and led by example, building key relationships with local and state legislators, serving the most underserved patient populations, and helping San Francisco and Marin to acheive the highest vaccination rates in the state. Be sure to scan the QR code below with your phone to read the SFMMS Annual Report.

6

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

CMA House of Delegates 2021:

MEDICINE, MONEY, EQUITY & MORE Michael Schrader, MD, PhD The CMA House of Delegates was convened for the 150th time on October 22, 2021 as a virtual program for the second year in a row. Your San Francisco Marin delegation District VIII was well represented among the over 400 delegates in attendance. This year we explored and endorsed two major issues, voted for a new CMA President-Elect, inaugurated a new CMA President, and honored the service of two-term CMA President, SFMMS’s own Dr. Peter Bretan.

The two major issues were the Corporatization of Medicine and Health Equity and Structural Racism. Due to the virtual format, amendments to the major issues were proposed through Town Halls that were conducted online and then considered by the Councils and incorporated into the major issues. Consequently there was no debate prior to adoption.

The presentations about each issue were highly informative. We learned that the number of employed physicians has rapidly increased from 25% in 2012 to 70% today. The driving forces for this rapid change are financial pressures, administrative burden, generational differences in occupational expectations, and physician burnout. Market consolidation will limit consumer choice and erode physician autonomy. Private equity is looking to achieve a 20% return on investment that will no doubt cause dramatic increase in medical costs.

The terrible cost of health inequity was demonstrated by the disparities of health care outcomes and lifespans even in communities such as ours with better than average life expectancies.

Only by addressing health inequities in access, public health, and quality can we improve the health of all of our patients.

CMA CEO Dustin Corcoran delivered a call to arms speech against the gathering storm of the upcoming state proposition challenging MICRA. Dr. Peter Bretan gave a wonderful farewell speech. Dr. Robert Wailes was inaugurated President of the CMA and gave a speech addressing health equity, the fight for MICRA, and a call for physician engagement.

The election for CMA President-Elect was a four-way contest with a quick succession of electronic runoff votes that resulted in Dr. Donaldo Hernandez being elected. Dr. Hernandez campaigned on support for health equity and against administrative burden.

There was a healthy competition between the delegations to participate in donating to CALPAC. The San Diego delegation won. However, the CALPAC raffle for the donors was won by our own delegate, Dr. Kristina Casadei.

A “virtual” meeting doesn’t allow for the lively interaction we enjoy at the annual in-person CMA meeting, but the work got done. Thanks to the CMA leaders and staff for pulling such a challenging gathering together, and to our own delegates for participating—and here’s to the hope for a healthy return to an in-person gathering next year.

Dr. Schrader chairs the SFMMS delegation (with Dr. Ameena Ahmed, newly-elected vicechair) and is president-elect of the SFMMS.

2021 Election Results

2022 Officers (one-year term): President-Elect: Heyman Oo, MD, MPH Secretary: Jason Nau, MD Treasurer: Dennis Song, MD, DDS Editor: Gordon L. Fung, MD, PhD, FACC, FACP

2021 President-Elect, Michael Shrader, MD, PhD, FACP automatically succeeds to the office of President.

2021 President, Monique Schaulis, MD, automatically succeeds to the office of Immediate Past President.

Board of Directors (three-year term 2022-2024): Melinda Aquino, MD Mihal Emberton, MD Ian McLachlan, MD Sarita Satpathy, MD Kristen Swann, MD TBD--Yalda Shahram, MD and Neeru Singh, MD tied for 6th seat Nominations Committee (two-year term 2022-2023): Melinda Aquino, MD Ayanna Bennett, MD Mansi Desai, MD Tracey Hessel, MD WWW.SFMMS.ORG

Delegation to the CMA House of Delegates (two-year term 2022-2023): (Determination of ‘Delegate’ and ‘Alternate’ status will be made in late 2021/early 2022, after final SFMMS membership count is confirmed by CMA.

Ian McLachlan, MD Monique Schaulis, MD Michael Schrader, MD Ameena Ahmed, MD Kristina Casadei, MD Kim Newell Green, MD Man-Kit Leung, MD George Fouras, MD Anthony Digiorgio, MD

Dennis Song, MD Ari Hoffman, MD Zarah Iqbal, MD Melanie Thompson, DO Ben Meisel, MD Michael Kwok, MD Peter Teng, MD Nishita Nigam, MD Shilpen Patel, MD

Andrea Yeung, MD Mansi Desai, MD Roger Eng, MD Philip So, MD Anne Cummings, MD Camila Crabb-Fabersunne, MD Larry Bedard, MD Tracey Hessel, MD

Young Physicians Section (YPS) Delegate and Alternate to the California Medical Association House of Delegates Term: 2022-2023 Helen Yu, MD (Representative Delegate) Anthony Digiorgio, MD (Alternate Delegate) Mansi Desai, MD (Alternate Delegate) American Medical Association Delegate (two-year term 2022-2023): Man-Kit Leung, MD American Medical Association Alternate (two-year term 2022-2023): Kim Newell Green, MD

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

7

Special Section: Palliative Care

PEDIATRIC PALLIATIVE CARE AND THE CURE FOR MEDICINE Efrat Lelkes, MD Pediatric palliative and hospice medicine is not a field I was aware of, nor would have been interested in, as I started my medical career. As a new doctor, I thought I knew what it meant to be a physician. I wanted to fix things, to save children, to be a hero. As I have grown in this work, my views have shifted and expanded. I now view my role as a healer—I have learned that I am here to serve, not to fix. Pediatric palliative medicine has taught me this.

And now, at point of crisis within the American medical system, my hope is that the field of pediatric palliative medicine can teach us all.

Medicine within the United States is a field that has been slowly pushed away from its core. With the increased commodification of medicine, with the inculcation of capitalism and consumerism into the care of others, it is easy to lose our purpose. I hear constantly from medical students, trainees and colleagues that are struggling to remember why they entered the field of medicine. Though we want to do good, to make a difference in our patients’ lives, to improve the world around us, we feel unable to do so because of the constraints of the system. We are largely burned out; rates even before the COVID-19 pandemic were soaring throughout medicine.1 This has only worsened. Reasons for this are multifold, and stem from organizational and systemic strains and deficits.2 Resultantly we are emotionally exhausted, we are cynical, we feel encumbered by a system that is squeezing us and our patients simultaneously.

And yet, in the morass of struggles, I find joy and purpose in my work, gifted to me by pediatric palliative care. Through this work, I help care for children with life-threatening and life-limiting illness. We aim not to usurp the work of the primary teams, but to add an extra layer of support. For each child and each family, this is nuanced and unique, and yet, for each child and family, we get to be by their sides with compassion and love. Through this work, we are invited to share in the intimate moments of a family’s life. We are allowed to hold the suffering and bear witness to the uncertainties that exist for our children and their families. And though others at times balk at this work, declaring to me their aversion to caring for such sick children and for dying children, I hold gratitude for the beauty of our work.

In pediatric palliative and hospice medicine, we do care for children at the end of life. These deaths are often sudden and 8

always hard, though we have anticipated them. We have patients who are on our service for just a few days or even less— the children with perinatal diagnoses or rapidly advancing disease whose parents choose to bring them to die at home with home hospice, or the children in the hospital with sudden tragedies whose families may benefit from our care and support. Yet we also care for children and families that we get to know over years, some that we even graduate from hospice or palliative care. Unlike in adult palliative medicine, our children are offered the grace of concurrent care, allowing us to support them throughout the deep unknown of what will happen. In pediatrics, so much is uncertain—rare diagnoses, significant brain injury in young children who have neurologic plasticity, and rapidly emerging new therapies. For some of our families, this uncertainty is welcome; to not know when or if their child will die is a relief. For others, this uncertainty is destructive. For most, it is both. Our job in pediatric palliative medicine is to help families through it all. We hold the heartbreak and the worries, and we celebrate the triumphs.

In this work, especially though home-based pediatric palliative and hospice care, our aim is to do what is needed and what is right. From symptom management to conversations with patients and their families; from continuing to hope for life-prolongation or cure to death and bereavement, our work feels pure. We function outside of the pre-defined box of standard contemporary medicine and focus on the good of medicine.

Our work is relationship-centered and healing, both for our patients and for us. This is a field that, at its best, is truly transdisciplinary. Working side by side, our team of social workers, chaplains, expressive art therapists, massage therapists, acupuncturists, child life specialists, nurses, nurse practitioners, and physicians learn from each other and care as a team, without hierarchy, without ego, to improve the lives of others. Here is a field that elevates our beliefs and reinforces our dignity, our integrity, our equanimity, our veracity, our compassion.

I think often of the first patient that taught me the beauty of this work. A young girl with a debilitating disease, she lived a joyous life, filled with smiles and dancing. She knew deeply the love of her parents and her community. Late one evening, she stopped breathing. By the time she arrived in our pediatric critical care unit, she had suffered significant and irreversible

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

brain injury due to lack of oxygen. Her parents knew that her future had been taken, and that she herself would never have wanted to live like this, and so, lovingly, and courageously, they decided to allow her to die. Her parents wanted to bring her home for her death; they knew she would want to be in her bed, surrounded by her loved ones. And so, accompanied by our music therapist, we moved her from the hospital room, still ventilated with a breathing tube, to the ambulance. We played her favorite music, we talked about her, and we talked to her on the long ride home. When we arrived at her home, the community was there to greet her. A choir serenaded her as we laid her in her bed, by the window showcasing the bubble machine and the pinwheels decorating the lawn that had been placed by the neighborhood the night before. Her parents climbed into bed with her. We removed the breathing tube, and she took her last breath.

For me, this work is why I went into medicine. In palliative care and hospice medicine, we serve our patients and communities. We can ignore (mostly) the pressures of the system to make money. We can fight inequities and uphold social justice.

We are honored with meaningful connections and encounters always. We certainly face frustrations, sadness, and dismay, but we acknowledge and celebrate the need to care for ourselves and for each other. This work allows to remember our humanity and uphold the humanism of us all. And this is what we need to bring back to the rest of medicine. In this work lies the crux of meaning in medicine. In this we can thrive. Without this humanity, this humanism, we simply cannot continue.

Efrat Lelkes is a pediatric critical care and palliative care physician who is interested in fostering an increased understanding and integration of bioethics in pediatrics to ameliorate moral distress and enhance meaning in medicine for providers. After completion of medical school at the University of Wisconsin School of Medicine and Public Health and pediatric residency at the University of Chicago, she completed her Pediatric Critical Care Medicine fellowship at the University of California San Francisco, Palliative Medicine and Hospice fellowship at the University of Washington, and Pediatric Bioethics training through Mercy Children's Hospital. Dr. Lelkes is an Associate Professor in the Department of Pediatrics at UCSF, Pediatric GME Director of Wellbeing and Pediatric Medical Co-Director at By the Bay Health. Through bioethics, multidisciplinary education, and narrative medicine, she aims to strengthen our ability to provide excellent care, advance pediatric medicine, care for the sickest of children and for each other.

References 1. National Academies of Sciences, Engineering, and Medicine 2019. Taking Action Against Clinician Burnout: A Systems Approach to Professional Well-Being. Washington, DC: The National Academies Press. https://doi. org/10.17226/25521.

2. West CP, Dyrbye LN, Shanafelt TD. Physician burnout: contributors, consequences and solutions. J Intern Med. 2018 Jun;283(6):516-529. doi: 10.1111/joim.12752.

VitalTalk Bay Area Hub Creating Community and A Shared Language for our Clinicians A fundamental part of my palliative care training has been honing communication skills. I have learned, practiced, and taught with the support of VitalTalk, a non-profit whose vision is that every seriously ill patient will be surrounded by clinicians who can speak about what matters most and match care to values. VitalTalk is the premier training organization for clinicians seeking to advance their communication skills. Just as no doctor is born knowing how to handle a scalpel, the same is true for how to communicate effectively with seriously ill patients and their families.

We have been fortunate locally to have established a Bay Area Hub over the last four years, thanks to generous funding from the Stupski Foundation. During that time, led by Wendy Anderson, MD, now Director of Palliative Care Expansion at Alameda Health System, the Bay Area Hub faculty community has grown to include more than 70 faculty who work across the major Bay Area health care systems: Kaiser, UCSF, Stanford, Sutter, the San Francisco VA, Alameda Health System, Contra County Medical Center, Zuckerberg San Francisco General, and Santa Clara Valley Medical Center, as well as local hospices and community organizations. In turn, these faculty have taught an astonishing > 900 Bay Area clinician learners at half and full day courses, through VitalTalk and through courses they teach at their home institutions. Clinicians leave these courses feeling more confident in their ability to deliver serious news and discuss goals of care.

Beyond skill acquisition, the Bay Area Hub has also fostered the growth of our local palliative care community. We have gathered together for meals and meetings, and though lately haven’t been able to meet in person, still collaborate to teach together online across our various health systems. In the same way SFMMS fosters community between physicians across Marin and San Francisco, the Bay Area Hub has brought us together in the palliative care realm. It is these connections which helped create this robust palliative care journal issue, and continues to create a shared language that fosters quality palliative care in our communities. Thank you Dr. Wendy Anderson and to all of our VitalTalk Bay Area faculty and learners!

Learn more at VitalTalk.org. The site hosts easy to digest online videos, an app, self paced courses, and facilitated virtual courses that let you dive deep into your communication practice!

– Monique Schaulis, MD

WWW.SFMMS.ORG

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

9

Special Section: Palliative Care

NEW AND IMPROVED ADVANCE CARE PLANNING: Making it Easier for Patients and Clinicians Rebecca Sudore, MD As a palliative care physician and a primary care geriatrician, I know firsthand that it can be daunting to start conversations with our patients about their medical wishes, especially during time limited outpatient or inpatient visits. However, as the current COVID-19 pandemic has taught us, it is imperative that we begin these conversations early in the course of patients’ (people’s) life trajectory. It may help to know that the definition of advance care planning (ACP) is evolving and there are new tools to make advance care planning easier on patients and clinicians.

On the heels of high-profile court cases concerning the right to have one’s wishes honored at the end of life (e.g., Quinlan and Cruzan), The Patient Self Determination Act, was passed in 1991. This Act requires healthcare entities who receive federal funding to provide information about advance healthcare directives. Although the goal of the Act was to honor patients’ wishes during serious and terminal illness, it resulted in a definition of ACP that focused on checkboxes and a one-time completion a of legal advance directive form with an emphasis on “code status.”

Checkboxes are easy to measure, especially at the health system level, but they often do not adequately prepare the patient or their trusted decision makers for the myriad of medical decisions they may face over the life course. Furthermore, several large studies have shown that a focus only on advance directive forms has not resulted in increased ACP or improved satisfaction with care.

The good news is that the advance care planning as a field has evolved over the last 30 years. Our research team at the University of California, San Francisco (UCSF) convened a large, interdisciplinary, international panel of experts in advance care planning to update the definition. The new definition, published in 2017, defines ACP as “a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.”

This broader definition now includes actions such as conversations at the kitchen table or discussions with medical providers.

In addition, our team and others have been calling to expand ACP even further to include preparation for people (whether “patients” or not) and their caregivers for communication and medical decisions making both NOW and for their future med-

10

ical care. In this model, advance directive documents and Physician’s Orders for Life Sustaining Treatment (POLST) are still important for patient care, but they are just one piece of a much larger puzzle. We must also help patients and families prepare for the medical decisions and discussions that patients may have with us about their care or with other medical providers they have never met, such as in the ER or hospital during a crisis.

To make things easier, we and others have shown that if people are given easy-to-read health information they can understand, including in their primary language, they can start to engage in the ACP process on their own and before, during, or after clinical visits.

To this end, our team at UCSF developed a free, easy-to-use website called PREPAREforYourCare.org. The PREPARE program is an easy-to-use, online, HIPAA-compliant, ACP program in English and Spanish that uses video stories to help prepare people for communication and decision making. It is available in English and Spanish and can be used by the public, by community and healthcare organizations, and medical providers. The program has five steps including (1) how to choose a medical decision maker; (2) how to decide what is most important in life; (3) how to decide on flexibility for the medical decision maker; (4) how to talk to others about your wishes; and (5) how to ask medical providers the right questions. Patients can pick and choose the steps that are right for them and each step, with the video stories, takes about 5-10 minutes. With concrete examples of how to start and have these planning conversations, PREPARE makes it easier for people of all backgrounds to engage in ACP. People can access the PREPARE program online via computer, smartphone, or tablet, and at a time and place that is best for them.

The PREPARE program also has legally valid advance directive documents for all 50 states in English and Spanish, and for California, the forms are in 10 different languages. The PREPARE advance directive forms were co-created by patients, caregivers, and legal experts at UC Hasting College of Law and may look different than traditional forms. They are written at a 5th-grade reading level (the mean reading level of the elderly in the US), include pictures that help explain the text, and provide education about what makes a good medical decision maker (i.e.,

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

power of attorney for health care). The forms also include questions about the person’s quality of life and what brings their life meaning and leaves space for people to explain their medical wishes. It is often the “why,” and not just the checkbox that can help guide families, friends, and clinicians during a crisis and at the bedside. These advance directive forms have been integrated right into the PREPARE website. This means that if people go through the PREPARE program and answer values questions about themselves, this information will automatically be populated onto an advance directive form. People can also go directly to an advance directive step to fill out the form online or download a form to fill out their wishes.

To make ACP easier for clinicians, it can be helpful to give patients easy-to-understand materials ahead of the visits as some people will be able to do some pre-planning ahead of time.

This will help improve the quality of the ACP conversations as well as cut down on the time needed for education about ACP. For example, in our randomized trials of English and Spanish speaking older patients, we targeted the PREPARE intervention only to patients without providing any intervention or education to clinicians or asking them to do anything beyond their usual care. Our studies have found that over 98% of patients were able to engage in some form of ACP on their own, and when they did come to a clinic visit, they were nearly 50% more likely to bring up ACP to the clinician without prompting.

In addition to offering easy-to-read materials in patients’ own language prior to the visit, it can be helpful for clinicians to think about ACP in a step-by-step way. We created a free “Simple Scripts” guide on our PREPARE provider page to give clinicians examples of what they can say to start these conversations.

When pressed for time, it can be helpful to ask about a surrogate decision maker (also called a proxy, medical representative, medical decision maker, durable power of attorney for healthcare, etc.) For example, clinicians can ask, “Who would you trust to help make medical decisions for you?” This can be followed up by asking if your patient has talked to the surrogate. This will either give you all the information you need about that person’s medical wishes or alert you to the need for more discussion. It can also be helpful to ask about prior advance directives as some patients may have these at home, have completed them during

WWW.SFMMS.ORG

prior estate planning, or know what they are and may have some ideas about what they would write down. At further follow-up or when time permits, we have added other questions to the Simple Script guide to ease into asking patients about their medical wishes during a crisis.

Given all the demands on clinicians, we know the thought of more charting is also daunting. However, documenting your conversations, more than just “full code,” and adding even a little bit of context about the person and their preferences can help you, the patients’ family and friends, and other medical providers who may be taking on the care of this patient during a crisis.

Health systems can support these efforts as well by providing a central location in the electronic health record to document conversations as well as advance directive forms. Thinking about workflow is also key. ACP conversations can now be reimbursed, and there are ways to include other staff members, such as nurses, social workers, and chaplains, and still be able to bill if the billing clinician is involved. Health systems can also consider innovations such as sending ACP messages and providing links to ACP tools through patient portals. PREPARE pamphlets can even be given out at the front desk or at vaccine sites.

It is an exciting time for advance care planning with expanded and broader definitions and free and easy-to-use tools for patients and clinicians. We owe it to our patients to do all we can to ensure that peoples’ most cherished wishes, health care goals, and values are honored. We can do this by expanding access to easy-to-use advance care planning materials and taking care planning one step at a time.

Rebecca Sudore, MD is a geriatrician, palliative medicine physician and professor of medicine at UCSF. She is the creator and founder of PREPAREforYourCare.org—a free, online advance care planning program that includes video stories, easy-to-read state-specific advance directives in several languages, pamphlets for patients, and simple scripts clinicians can use to start advance care planning conversations.

Contact: Rebecca.Sudore@ucsf.edu.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

11

Special Section: Palliative Care

GRIEF ON FIRE Kai Romero, MD As frontline physicians have navigated this pandemic over the past year and a half, I’ve been surprised and delighted to see the myriad ways in which my colleagues have manifested their resilience. Even in the darkest days of the lockdown or the midst of our worst surge, I’ve always known that reliably, walking into the ED on a weekend night, that I’d find someone in a good mood. It was a relief, frankly, that even the ravages of the worst medical emergency of our lifetime (I hope), that human beings have a tendency to, well, survive. And what that looked like in the Emergency Department where I work was a little gallows humor, a little burnout, and a little lighthearted cheer. A vacation here or there, and some good TV. Heads down, don’t dwell, and just keep putting one foot in front of the other.

In my other work, as a hospice physician, it looked a little different. I heard a lot, to say the least, about suffering. The suffering of our patients, of course, but the suffering inherent in isolation from colleagues. The sadness of distance from grandchildren; the birthdays missed and the memories unformed.

When people gathered in remote meetings, we talked about the heaviness of the time; the toll these waves of grief were taking on us, collectively and as individuals. We talked about what we were doing to cope (walking, meditating, escaping in crappy reality TV) and what worked, or didn’t. We talked about the weight (emotional, spiritual, psychological) that so much death and dying might have on us and on our community.

And as we emerge from this awful time, I’m left wondering why processing grief feels like it’s often the sole purview of the hospice clinician. As I read stories about healthcare workers across the country mired in PTSD, and considering leaving the profession, I wonder whether at least some component of that is there have been neither opportunities nor structure to process the feelings of loss this year has generated. Loss of patients, absolutely, but loss too of our fiercely held belief that death is a failure, that physicians can prevent or stop it if we’re good enough. Not to mention the personal loss—of time with beloved elders, or newly born nieces and nephews, of resources, or of jobs.

The list could go on forever! But rather than sit here and remind you of all the ways that you have left this time with less than you came into it with, I’ll propose an alternate activity. I think it’s time we, as physicians, learned how to grieve at work.

Well, not grieve AT work, necessarily, but grieve OUR work. That we learn how to take the big and complicated feelings that arise with a patient death, or a medical error and begin to apply some 12

well-worn behaviors to moving through them, rather than simply burying them in the sand and forging ahead. I don’t know about you, but I wasn’t taught in medical school or residency how to do this, and certainly not how to do it well.

Let’s talk about it.

Step 1: Identify that you are indeed grieving

This is harder than it sounds. Sometimes grief can be a feeling—a tightness in your throat or neck, or heaviness in your chest when you recall a patient encounter, or even some fatigue or nausea. In medicine, we’re encouraged to wholly shoulder the shame and blame around an event like a patient death or a medical error and cruise right past the emotion of it into perseverating on the medical details. If you think back to the last time a colleague debriefed with you about a tough case, can you remember what they focused on? Was it the sadness or was it the medical minutiae? It is instinctive for us to dip right into what we should have done—even if the “should” makes no rational sense.

But along these lines, it bears mentioning that you may discover that there was something that you might have done to avert a bad outcome. And it’s worth noting that, as well as noting that this can occur simultaneously with grief. You can feel upset that you missed an aortic dissection, but don’t forget that you might also be grieving the loss of the connection that you had to that patient, however brief. Guilt and shame don’t fully encompass the totality of that emotional experience.

Step 2: Process your Grief

This is something that some people may have experience with regarding their own personal grief. I’m not proposing that we process work grief the way we do personal grief—that would be incredibly draining and time intensive, and frankly, it would make most people not want to do it. So, I propose a few brief steps, pulled from the hospice world, to manage sadness and loss in a work context.

One piece of this is simply the cultural expectation amongst hospice providers that grief processing happens. It’s a professional responsibility to manage your grief—in whatever way makes the most sense. While some of the group opportunities for grief processing that happen on the hospice side are not immediately available to ED docs (services of remembrance, group shared recollections in team meeting), I think there are plenty that are. And these include: taking a moment of silence, one-on-one discussion with a co-worker, journaling, or writing a letter. Any of these can take as little as five or ten minutes.

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

When it comes to one-on-one processing here’s what it needs to be: a time to be with your sadness and loss (Not run from it!

Not bury it!) with someone who is willing and able to take on this burden. As many of us know—be wary of turning to your partner too frequently for this, or at a minimum check in to see if it is working for them. Colleagues, supervisors, or a therapist are some great choices for this role.

And I’ll give a plug (for the criers out there) to put aside a time to cry. It’s often challenging to navigate this in the moment, and may be distracting, but a post-shift shower cry can be a great way to release the pent-up emotion and sadness around the event. Personally, I have only two options: plan my crying or let the crying plan itself—the latter results in some awkward Uber rides, so I plan my crying.

Step 3: Finish Processing your grief

This part is key—the only way you can honestly engage with your work grief is with the awareness that it is not an unending spiral of sadness. When grieving for a family member or a loved one, there’s a natural and appropriate expectation that it will be a longer, more gradual process of recovery. When it comes to work, however, there must be a more structured and frankly less intensive approach.

It’s important to create a boundary for yourself around what you will and won’t fixate on. Mostly, you want to be pretty attentive to any “hot spots” of grief that generate a downward spiral of emotion rather than releasing you from it. If you keep perseverating on what the experience was for your trauma patient in the moments before she was hit by a car, and it is distressing, try to focus on other aspects of her experience and care that you can address in a more measured fashion. As I’ve said—this is ideally not a deep dive. It’s a routine ritual.

WWW.SFMMS.ORG

For many people, it can be helpful to set a time deadline rather than a content deadline. For example, I’m going to let myself really wallow in this for 48 hours, and then I’m going to try and wrap it up. If you’ve having trouble meeting your own deadline, or find that despite your best attempts you’re really being driven to distraction by one element of a patient’s experience or care, it’s time to call in the pros.

I hope this overview is helpful for those of you finding it difficult to move on from a year awash in unprocessed sadness and loss. As physicians, all too often we have been asked to simply tolerate whatever is thrown our way, pandemic or no. I hope that having a few tools in our back pockets to work through the inherent challenges in our work will make the grieving process feel approachable, manageable, and, ultimately, additive to your experience of medicine.

Kai Romero, MD is Chief Medical Officer, By the Bay Health (By the Bay Health | Marin, San Francisco, San Mateo, Sonoma). She is board certified in Emergency Medicine. She completed her residency at UCSF-ZSFGH and fellowship in Hospice and Palliative Care at UC San Francisco. She continues to practice Emergency Medicine at Kaiser San Francisco, and outpatient Palliative Care at UCSF. She joined By the Bay Health in 2018.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

13

Special Section: Palliative Care

PANDEMIC TO PANDEMIC: A CAREER IN PALLIATIVE CARE Steven Pantilat, MD “Let me get that for you—I really appreciate you taking care of my friend.” I was an intern on call at San Francisco General Hospital, the year was 1989, and I had just admitted another young man with Pneumocystis carinii pneumonia (PCP) to 5A, the AIDS ward. I was ordering a midnight meal in the small café to take a brief respite from the emergency room that we fondly called “the mish,” when I heard the voice behind me. As we chatted, the man shared that his friend’s older brother also had AIDS. The only two sons in a working-class family from the Midwest, they had both moved to San Francisco just a few years earlier. Their parents did not know they were gay or had AIDS. Tears welled up as I considered the tragedy unfolding in slow motion for this family. Their story was a familiar one.

I arrived in San Francisco to start medical school at UCSF in the fall of 1985, four years after the first report of a new illness that would come to be known as AIDS. As surprising as it may seem now, at the time I did not realize that so much of my training in medicine would come to be defined by my experience caring for people with AIDS or that providing that care would fundamentally define and transform my career. At the time, people with AIDS faced stigma, fear, and homophobia broadly and from health care professionals. Health insurance applications from single men in certain zip codes were inexplicably lost. Amidst it all, young people, disconnected from family that couldn’t or wouldn’t accept their lives, found community and comfort with new families made up of friends; these communities remained their steadfast support even as they were devastated by this nearly universally fatal illness.

And all the death. Early studies showed poor survival from PCP with mechanical ventilation. We had to learn how to talk with young men about agonizing choices about end of life. When family did arrive, it often made the situation worse. Many parents learned that their son was gay and dying of AIDS in one fell swoop. Partners and friends were excluded from the bedside by families that were in shock, angry, and biased. So often, the best we could do was provide compassion, caring and support. We learned to talk about goals of care, to encourage people to document surrogates, to sit at the bedside when it was all that was left to do. We survived through the camaraderie of practicing as a team of nurses, doctors, social workers, chaplains, and volun14

teers. We didn’t have a name for the care we were providing. We do now: palliative care.

In 1995 the first effective antiretroviral drugs became available and radically changed AIDS. While AIDS is still a prevalent illness around the world and necessary research continues, for most people with access to medications, AIDS is no longer a death sentence but a chronic disease. While steeped in tragedy and grief, my time caring for people with AIDS was a career defining experience for which I am grateful. I learned how much I valued talking with patients about important decisions, negotiating and mediating difficult family discussions, encouraging patients to make the most of their time, offering hope for what could still be in face of overwhelming darkness, and comforting where there is no cure. These were the reasons I came to medicine. I found them in a place I did not expect.

It took a few years to give voice and form to these experiences. It was not until 1996 that I first heard the words palliative care, the name for the care we had been jury rigging. I realized that this was the work I loved and began moving my career to it. In 1999, we started our inpatient palliative care service at UCSF to formally provide the kind of care we had seen have such a profound impact. In 2005 we started our first outpatient palliative care clinic and, along with services across San Francisco, the Bay Area, California, and the US, have been growing ever since. Thankfully, AIDS is no longer a common diagnosis among our patients seen in palliative care and today we care for people with a range of serious illnesses including cancer, neurodegenerative diseases, chronic lung, liver, kidney, and heart disease, and many more.

“The most important thing for me is to be with my family at the end of life.” My patient had interstitial lung disease. He previously said he would want to come to the hospital to treat an infection and now was reconsidering in light of rules that severely limited visitors in the hospital. Many of our palliative care outpatients faced the same agonizing decision about whether to come to the hospital if there was any chance they would die there alone. This was March 2020 and memories of the 1980s came flooding back in the face of a new pandemic.

While the Covid 19 pandemic is very different than AIDS, there are similarities. Even in the early years of the AIDS epidemic,

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

it was clear that AIDS was not spread through casual contact but nonetheless there was great fear of occupational exposure among healthcare workers. As with Covid, there was widespread uncertainty and misinformation, though no internet to spread it widely. Perhaps because Covid is spread so readily from person to person in casual contexts, the resources marshalled against Covid dwarf those assigned to AIDS, especially early on. The speed of science and the development of an effective Covid vaccine seem miraculous and raise the question of how many lives we might have saved had we invested similarly in the early years of the fight against AIDS. And again, we have been called upon to provide palliative care in the face of a devastating and deadly disease. Fortunately, this time around we have well-established palliative care teams to respond and a more expansive understanding of palliative care. While our primary goal is still to help people achieve the best possible quality of life, the initial focus on end of life has grown to include people with life threatening illness at any stage of illness. Our palliative care team reached out to our outpatients to revisit their preferences for hospitalization and develop contingency plans to address symptoms at home. In the hospital we quickly deployed iPads to facilitate communication between families and patients and families and clinicians, a technology not available in the late 1980s. We provided education on discussing prognosis and goals of care and established a program of outreach to patients with Covid in the intensive care unit. When our colleagues in New York were overwhelmed by the pandemic, we were reminded that demand for palliative care far outstrips supply even in the best of times and volunteered to talk with their patients and families about prognosis and decision making.

In my 35 years in medicine in San Francisco I have practiced during two devastating pandemics. I have seen how science can tackle these scourges and offer effective treatments. I have witnessed how technology can mitigate the challenges and spread misinformation and bias that can exacerbate the situation, keep people from getting care, and lead to more death. I have also seen that caring and compassion, thoughtful communication, and hope are universal attributes of good care and that these lessons learned in the cauldron of one pandemic translated to the next. As we say in palliative care, I hope to never have to confront another pandemic, though I worry that I will. One thing I am sure of, with compassion and caring alongside scientific discovery we will meet any challenge with hope.”

Steven Pantilat, MD is the Kates-Burnard and Hellman Distinguished Professor in Palliative Care and the Chief of the Division of Palliative Medicine at UCSF Health. Dr. Pantilat is an internationally recognized expert in Palliative Care. He has published over 130 peer-reviewed scientific papers and authored two dozen book chapters. Dr. Pantilat is the Board President of the Palliative Care Quality Collaborative, Chair of the Advisory Board for the Cambia Health Foundation’s Sojourns Scholar Leadership Program, and co-Director of the UCSF Palliative Care Leadership Center. He is the author of “Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and their Caregivers” published by DaCapo Lifelong Books in 2017. Dr. Pantilat gave a TEDMED talk in 2018 and he and the palliative care team at UCSF are featured in the Academy Award-nominated, Netflix documentary, “End Game.”

PEARLS FROM THE PRACTICE A New Book from John Chuck, MD a focal Family Practitioner on how to thrive as a physician.

This author was the recent guest at an SFMMS wellness book session, a recording of which is posted here: http://www.sfmms.org/get-help/physician-wellness.aspx

In recognition of a human condition that spans the entire spectrum from wonderful to miserable, and with a strong preference for the wonderful, Dr. John Chuck has drawn on over 30 years of experience as a clinician, wellness leader, and teacher to create Pearls from the Practice of Life – a family physician’s guide to help you struggle less and thrive more.

His "pearls" of insight and wisdom will help you to better understand our shared predicament as human beings, namely our suffering and mortality, and leverage evidence-based habits to meet our hierarchy of needs for survival, safety, love and belonging, esteem, and self-actualization. Just as mollusks form pearls in response to irritants, Dr. Chuck believes that we can emerge from our struggles as newer, better versions of ourselves. In the pages of Pearls, find the makings of that metamorphosis.

The book features 69 chapters divided into six parts. Read start to finish, it delivers a comprehensive message of hope and healing that begins with birth and ends with death. At the same time, each chapter is written so that it can stand alone as an inspirational message to be revisited or shared with others in need of perspective and encouragement.

“Only Dr. John Chuck, a healer, an inspirational leader, and expert in wellness, could issue this prescription to thrive more.

With a dose of humor and self-deprecation, Pearls builds on John’s wisdom from an incredible career and provides practical tips to help us flourish.”

– Richard S. Isaacs, MD, FACS, CEO and Executive Director, The Permanente Medical Group, Inc.; President and CEO, The MidAtlantic Permanente Medical Group; P.C., Kaiser Permanente WWW.SFMMS.ORG

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

15

Special Section: Palliative Care

THE BENEFIT OF HOSPICE Dawn Gross, MD, PhD Sometimes, in order to provide what is needed, being open to the unexpected is essential. And sometimes, even when the unexpected happens, it may not be at all what is needed.

“Great news! You’re not dying.”

Granted, this is not a frequent phrase a hospice physician gets to say. Yet, on the occasion it has p a s s e d f r o m my l i p s i n t o t h e stunned ears of another it has surprisingly, rarely been greeted with ecstasy. Instead, patients and families have become angered, frustrated and even disappointed.

Phil Havler was a young 40-year-old who had been told by various doctors his liver was failing. Because of the apparent advanced state of his diagnosis, and his ineligibility to be considered for an organ transplant due to his continued substance use, he became eligible to enroll in hospice. His years of chronic pain had recently become a thing of the past thanks to a variety of hospice interventions including acupuncture, massage therapy, an intensified pain medication regimen, and likely most importantly, Andres, his home health aide. Despite my expectation that Phil would be elated to learn his liver had recovered (it can do that on occasion, as it's a fairly resilient organ), Phil was mortified.

“Really, doc? Are you sure? 'Cause I really do love those showers I get from Andres every Thursday. Does this mean those will have to stop now?”

Phil lived as a long-term care resident in an over-filled, under-staffed, county-run nursing facility. His substance-use disorder led him to a life of isolation due to estranged relationships. Starved for companionship, Phil's transient terminal diagnosis suddenly offered him a built-in circle of companionship filled with people focused on nurturing his life in the face of death. Now, with a full life-expectancy restored, hospice care was required to be removed, returning Phil to the experience of feeling neglected and left for dead.

To be sure, Phil represents a rare scenario of how people become eligible to be discharged from hospice care. More typically, when people no longer need hospice, or graduate, as it is often referred, it is because their illness is not progressing as rapidly as anticipated, meaning the hospice team no longer has strong evidence to support a six month prognosis. One might think this is a cause for celebration. I have come to learn it is often quite the opposite.

Thomas Knowles was a charming gentleman living in an elegant assisted-living facility. He smiled every time I greeted him, usually in the grand lobby where he was sitting in an armchair with his four-legged walker tucked by his side just within reach.

16

During my routine monthly hospice visits, he would play along with my questions, answering adoringly, “Yes dear. I’m fine dear.”

Despite my customary greeting reminding him I am his doctor, I frequently overheard him telling a neighboring resident, “That's my daughter. She makes such a fuss over me but it’s so nice that she visits.”

Thomas, like many people who enroll in hospice, began receiving our care after being hospitalized. In his case it was for severe anemia. The source of blood loss was never identified, but it was clear at the time that an 87-year-old man was not likely to fair well with only half the amount of blood in his body he should otherwise have. Despite his ghostly appearance, his vigor remained impressive. In fact, over the nine months I was his hospice physician, his blood levels returned to normal without any hint of a blood disorder. But that was not what his daughter, Emma, was focused on.

“I was under the impression when my father enrolled in hospice you would stop everything!” Emma's voice shook with fury.

My delight in sharing how well her father had been doing was not what she wanted to hear.

“Hospice is not about doing nothing. It is about providing intensive comfort care. My team and I have merely focused on providing your father with that which would give him the best quality of life for however long he has,” I said. "We have all really enjoyed getting to be with him and are sad to have to say goodbye, at least for now."

After several minutes of a circular conversation regarding continuing or discontinuing medications to maintain his blood sugar balance and encourage his hemoglobin along, it became clear that the conversation Emma wanted to have wasn’t really about preventing GI bleeding or a diabetic coma.

“This isn’t my father anymore!" Emma roared. "He might smile and be pleasant and cute with you, but he used to be a disarmingly intelligent and productive man. Now all he can muster is a ‘Yes dear.’”

Silence filled the space between the telephone wires. What was underneath the hostility was deep and undisclosed grief for the father that once was but is no more. Thomas' body roamed the halls like a taunting shadow of the man Emma longed to hold in her arms.

“We didn’t want this to be a long drawn out…” the last words of Emma's sentence were lost in a soft sob.

“Dementia is hardest on family members," I began. "The person living with dementia is ultimately spared the hardship of bearing witness to two deaths—first the mind, then the body." But it was no use. Emma's need was clear, and I had no way to satisfy her.

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

Thomas had landed himself inside the ultimate Medicare doughnut hole: too healthy for hospice but fragile enough that Emma and I both knew it was only a matter of time before something else was going to break.

Hospice eligibility is defined within categories of major disease processes such as cancer, heart disease, lung disease, etc.

The problem is that apart from reimbursement models, the benefit and guidelines have not been meaningfully updated since the hospice benefit was created in the 1980's. Yet how we die has dramatically changed. One of the most striking changes is in the increased numbers of people living with dementia.

Dementia, unlike other diagnoses, is especially difficult to prognosticate. It isn't enough for a person to become forgetful and confused or even lose their ability to speak. They also must have an additional significant event that acts as a herald of sorts to establish a prognosis of six months or less. This event is either a series of hospitalizations, frequently the result of falls which may be complicated by broken bones, or infections such as pneumonia due to losing the ability to effectively swallow. Hence, for people living with dementia inside the Medicare doughnut hole, especially residents living in facilities like Emma's father, where the decision to call 911 is no longer in the

WWW.SFMMS.ORG

hands of the family, people like Thomas routinely end up on the default path back to life-prolonging medical care that hospitals are built to automatically provide. The machinery of medicine is difficult to unplug. Despite its well-documented excess both in spending and in causing unintended distress at the end of life, the automatic valuing of healthcare to focus on sustaining the body before taking into account the soul is what continues to repave this well-tread path of curing, all too often blind to its assault on healing. It is long overdue for the benefit of hospice to be recognized and valued for its ability to far exceed what today's hospice benefit will allow. It is time to align goals of care with the care that is possible rather than the other way round.

The population that will benefit from hospice is growing. It is time for the hospice benefit to grow up and match the need.

Dawn M. Gross, MD, PhD is with the UCSF Palliative Care Service, ANX Hospice Medical Director, and Co-Founder/CEO of www. dyalougues.com.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

17

Special Section: Palliative Care

UNIVERSAL PALLIATIVE CARE— The MERI Center’s Vision for Education in Palliative Care Redwing Keyssar, RN; Gayle Kojimoto, BA; Judy Long, BCC and Michael W. Rabow, MD Palliative care offered by interdisciplinary teams of specialists (trained in scrupulous symptom management, advance care planning, and communication) has demonstrated benefits to patients, families, and health care systems, across both the inpatient and outpatient settings. Evidence abounds that such Specialty Palliative Care (SPC) helps people facing serious illness feel better and can align their care with their preferences and values. SPC provided concurrently with expert oncologic care has even led, in some settings, not just to an improvement in quality of life but to a prolongation of length of life as well.1 However, with just a few hundred palliative care physician fellows graduating each year (and with the retirement of current palliative care specialists)2, there will never be enough trained palliative care clinicians of any discipline to care for the millions of people in need in our country alone.

In the setting of profound limitations in the capacity of SPC— specialist work force limitations in California3 and nationally— many have looked to a vision of Primary Palliative Care (PPC) whereby all providers caring for patients with serious illness gain competencies in providing basic symptom management and serious illness communication skills.4 If basic palliative care can be provided by front-line oncologists, cardiologists, pulmonologist, neurologists, primary care providers, and the nurses working in those fields, perhaps similar benefits can accrue as seen in SPC. Building good palliative care practices into the routines of all health care workflows, processes, and systems undoubtedly improves care. However, there is some suggestion in the emerging literature on PPC that palliative care generalists may not offer the same benefits as palliative care specialists. The things that palliative care specialists do (and the associated outcomes) may not be replicated by generalists. In a recent study by Yael Schenker, oncology nurses well-trained in PPC were unable to achieve benefits that their SPC colleagues have demonstrated.5 While we and many others remain hopeful that our health care system can figure out a way to train and support generalists to provide effective palliative care to the vast majority of patients with serious illness, some are beginning to focus elsewhere.

At UCSF, the Symptom Management Service (SMS) provides SPC in the cancer center (the Helen Diller Family Comprehensive Cancer Center). One of the largest SPC outpatient programs in a cancer center nationally, the SMS still only is able to serve about 15% of the cancer center’s patients. Clearly, many of the other 85% of patients would benefit from the outcomes achieved by SMS SPC service.6,-8 However, it is difficult to engage busy oncologists in learning new palliative care skills. Everyone is so, so busy. Reimbursement for cancer care traditionally is linked to 18

the provision of cancer treatments. And while value-based payment models might eventually change this dynamic, for now, some are beginning to turn to a third model of care—"Universal Palliative Care.”

Universal Palliative Care (UPC) — or what also might be described as Palliative Care for the People — is an old concept of arming patients themselves, and their families and communities, with the skills necessary to address as many of their care needs as possible. People (and those who love them) might be able to take care of themselves for the vast majority of their palliative care needs (and certainly have a powerful motivation to do so). There is a popular book, Donde No Hay Doctor [Where There is No Doctor], that is considered by the World Health Organization to be the most widely-used health care manual in the world. This book is written with the belief that “Health care is not only everyone’s right, but everyone’s responsibility”9 and is intended to empower people and communities to care for themselves for a large portion of their own needs. It is possible that self-, family-, and community-care is what is needed in palliative care. Perhaps, the greatest need is for all people to have some basic understanding and education related to caring for each other when we are ill, supporting people with serious illness as well as family caregivers, understanding the inequities of our healthcare system and how to navigate the complexity of our healthcare systems, and how to deal with loss and grief.

The MERI Center for Education in Palliative Care at UCSF/Mt Zion was created in 2019 to promote PPC Education on the UCSF/ Mount Zion campus.10 However, engaging busy clinicians in such education is challenging. The task of educating clinicians in PPC became all the more daunting during the COVID-19 pandemic, given the stressors on the healthcare system in general and on individuals involved in healthcare in particular. Stretched thin by demands for extra hours, new learning environments, and constant healthcare crises and grief all over the world,11 the idea of having “extra time” to learn a new skill or philosophy of care has not been on anyone’s schedule. In response to this, MERI has expanded our PPC efforts in supporting the resiliency of clinicians and supporting the UCSF community in healing from grief.

MERI offers resiliency sessions for clinical teams at UCSF, a weekly poetic medicine session called Wounded Healers, that encourages all levels of healthcare workers to express themselves creatively, and a bi-annual online Day of Remembering for UCSF clinicians and patients to honor those who have died in our care.

In 2020/2021, over 475 people attended these sessions.

As important as SPC and PRC have become in the global pandemic and associated healthcare crisis, MERI’s impact has grown fastest and most reliably in serving people and their loved ones directly (that is, in providing UPC rather than PPC education).

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

Since the pandemic lessened our access and ability to work with clinicians directly, the MERI Center has focused much of our attention on addressing the public or community needs for support and education related to palliative care. At first it was difficult to imagine deep enough levels of support for people in Zoom formats. However, we have learned through our experience during the pandemic that the ease of access for people throughout the Bay Area, the country, and indeed internationally, has created communities of people who are truly creating a world wide web of support for each other and within their own communities. Between July 2020 and June 2021, these online sessions reached 2,780 people and include: • What Matters Most? Advance Care Planning Workshop • Food for Thought: A Poetry Cafe • Last Acts of Kindness; Care & Compassion at the End of Life • Loss, Losing, & Loosening: Exploring Grief and Healing Through Poem-Making • Poetic Medicine for the "Wounded Healer" • Resiliency for People with Neurologic Illness • Resiliency for People with Serious Illness • Serious Illness Support Group: Conversation about Living and Dying • Sustainable Caregiving for Care Partners of People with Neurologic Illness • Sustainable Caregiving for Care Partners of People with Serious Illness Details about each of these offerings can be found on the MERI Center website at https://MERI.UCSF.edu Ultimately, the ideal palliative care network for patients, loved ones, clinicians, and health systems alike is a thoughtful, integrated balance of Specialty, Primary, and Universal Palliative Care. With all the resources, expertise, history of activism, and spirit of community, the Bay Area is well-suited to excel and lead on all fronts.

Judy Long, BCC is Associate Director of Wellbeing & Resili e n ce , D i v i s i o n o f Palliative Medicine/ UCSF. She is the Chaplain/educator for the MERI Center and the UCSF Symptom Mana g e m e n t S e r v i ce ; Redwing Keyssar, RN is the Director of Patient and Caregiver Education at the MERI Center. She is a Palliative Care nurse and educator and an author/poet Gayle Kojimoto, BA has worked in Palliative Care at UCSF in many roles and is currently the Program Manager for the MERI Center; Michael W. Rabow, MD is the Director of the MERI Center as well as the Director of the UCSF Symptom Management Service; Palliative Care, Helen Diller Family Comprehensive Cancer Center; Associate Chief for Education & Mentoring, Division of Palliative Medicine; Helen Diller Family Chair in Palliative Care and Professor of Clinical Medicine and Urology, UCSF. WWW.SFMMS.ORG

References 1. U1 Temel JS, Greer JA, El-Jawahri A, Pirl WF, Park ER, Jackson VA, Back AL, Kamdar M, Jacobsen J, Chittenden EH, Rinaldi SP, Gallagher ER, Eusebio JR, Li Z, Muzikansky A, Ryan DP. Effects of Early Integrated Palliative Care in Patients With Lung and GI Cancer: A Randomized Clinical Trial. J Clin Oncol. 2017 Mar 10;35(8):834-841.

2. Kamal AH, Bull JH, Swetz KM, Wolf SP, Shanafelt TD, Myers ER. Future of the Palliative Care Workforce: Preview to an Impending Crisis. Am J Med. 2017 Feb;130(2):113-114.

3. Kerr K. Palliative Care in California: Narrowing the Gap. Avaialbe at https://www.chcf.org/publication/palliativecare-california-narrowing-gap/.

4. Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med. 2013 Mar 28;368(13):1173-5.

5. Schenker Y, Althouse AD, Rosenzweig M, White DB, Chu E, Smith KJ, Resick JM, Belin S, Park SY, Smith TJ, Bakitas MA, Arnold RM. Effect of an Oncology Nurse-Led Primary Palliative Care Intervention on Patients With Advanced Cancer: The CONNECT Cluster Randomized Clinical Trial. JAMA Intern Med. 2021 Sep 13:e215185.

6. Rabow M, Small R, Jow A, Majure M, Chien A, Melisko M, Belkora J, Esserman LJ, Rugo H. The value of embedding: integrated palliative care for patients with metastatic breast cancer. Breast Cancer Res Treat. 2018 Feb;167(3):703-708.

7. Rabow MW, Benner C, Shepard N, Meng MV. Concurrent urologic and palliative care after cystectomy for treatment of muscle-invasive bladder cancer. Urol Oncol. 2015 Jun;33(6):267.e23-9.

8. Bischoff K, Weinberg V, Rabow MW. Palliative and oncologic co-management: symptom management for outpatients with cancer. Support Care Cancer. 2013 Nov;21(11):3031-7.

9. https://www.amazon.com/Where-There-No-DoctorHandbook/dp/0942364155/ref=pd_lpo_1?pd_rd_ i=0942364155&psc=1 10. Rabow MW, Keyssar JR, Long J, Aoki M, Kojimoto G. Palliative Care Education During COVID-19: The MERI Center for Education in Palliative Care at UCSF/Mt. Zion. Am J Hosp Palliat Care. 2021 Jul;38(7):845-849.

11. Rabow MW, Huang CS, White-Hammond GE, Tucker RO. Witnesses and Victims Both: Healthcare Workers and Grief in the Time of COVID-19. J Pain Symptom Manage. 2021 Sep;62(3):647-656.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

19

Special Section: Palliative Care

SOME MYTHS ABOUT MEDICAL AID IN DYING: What have we learned at the bedside?

Lonny Shavelson, MD When a terminally ill patient ends their life by taking legally prescribed medications to die, typically surrounded by their loving family—it’s been called everything from “death with dignity” to “a good death” to the accurate legal term “medical aid in dying.” I’ve been at the bedside for more than 200 of these aid-in-dying deaths and have been in awe of the resolve and courage of all concerned. But I’ve become equally aware of the various myths that mark this new aspect of end-of-life care. And the longer we’ve had aid in dying in California (now five years), the more I’ve realized that illuminating the mythology about aid in dying is as important as agreeing to prescribe medications to die.

The Major Myth: Misery vs. Mercy.

Since the earliest discussions and political advocacy to legalize medical aid in dying, advocates have promulgated a false dichotomy between a miserable death and a merciful death.

This is politically wise (what legislator doesn’t want to minimize suffering?), but terribly wrong. Hospice and palliative care clinicians provide excellent control of pain and suffering to the vast majority of their dying patients. Do we want to use the fear of a torturous death (misery) as the public face of aid in dying (mercy), or tell the truth that most patients will die just fine with good hospice and palliative care?

Don’t get me wrong: As one of the leading clinicians who has offered the lethal cocktail of aid in dying as an option to people who are close to death, of course I believe in it—when it’s an informed choice.

A patient with leukemia came to me asking for medical aid in dying, fearing a painful death. But patients with leukemia typically die by withering away from the weakness of anemia, not with substantial pain. When I explained this to the patient (why had no one told her this before?), she was relieved and decided to live on and see how her death unfolds, with the option of aid in dying in reserve, just in case. She lived for several months more, pain free, enjoying the time with her family, and died a peaceful and calm death—reassured to know that I would honor her aid-in-dying request at any time, should she decide that’s what she wants.

I want terminally ill patients to choose how they want to die based on information, not fear. And, I fear, the politicians and advocates working in the political minefields of aid in dying 20

are spreading useful political misinformation: That death is a choice between misery and mercy.

Surveys have shown that the most common fear of death is that it will be painful. So it would be logical to conclude that end-of-life pain is the most common reason for a patient to request medical aid in dying. But it’s not. In fact, pain is at the bottom of the list. At the top? A decreased ability to enjoy life. It’s as simple as that. But that’s not a strong political message.

The most common reason my patients have asked to go forward and take the medications to die is fatigue. Patients wait and wait, and then they tell me, simply, “Doc, I’m done.” With the excellent pain and symptom control hospices and palliative care now provide, I almost never hear “I’m in so much pain, I’m ready to die.” And if I do, my first action is to focus on pain management. The treatment of a pain crisis is pain control, not a prescription for death. But of course, should the patient—given accurate information—choose the option of the poison potion, I’ll be right at their side as they take the lethal medications.

And terminally ill patients are often working with outdated information. An 89-year-old female with melanoma spread from her skin to her liver asked me for medical aid in dying. “I watched my father die from cancer,” she said, “and it was horrible. I will not die like that.” But her father died in 1948, and medicine has advanced a bit since then—especially palliative medicine, home hospice care, pain management and overall symptom control.

My first job, then, was to reassure this patient, to bring her up to date—not to prescribe death. Of course, she might later request aid in dying, which I would provide. But again, fear is not the best motivation for realistic decision making. Yet one of the most common requests I hear from patients is, “I don’t want to die like my parents did.” Well, I say, it is highly likely you won’t.

Myth Two: Medical aid in dying is “Death with Dignity.”

I have forbidden myself from ever using the term death with dignity as a euphemism or synonym for medical aid in dying.

Who am I to say what a dignified death is? If a cancer patient decides to live on for every possible minute, even to the point of being on a ventilator in an ICU, do I tell him he’s not having a dignified death (because it’s not what I would want)? Aid-in-dying advocates and clinicians do not have a monopoly on deaths with dignity. Yet let’s see what’s out there: Washington’s aid-in-dying

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

law is named the Death with Dignity Act. And there’s the Maine Death with Dignity Act. And the political slogan, Death with Dignity: My life, my choice. In the news: Why a Seattle Man Chose Death with Dignity. And on and on. Again, we are playing on fear.

When we tell people that aid in dying and death with dignity are one and the same, we’re laying claim to dignity. That claim is, well, undignified.

And the language of death with dignity is confusing. A 96-year-old holocaust survivor with lung cancer was weeks from death. He told his hospice nurse, “I want that death with dignity.

I’ve suffered too much in this lifetime.” The nurse reassured him, “Of course we’ll provide a dignified death, that’s what we do.”

And she left it at that. Two weeks later, approaching death, he told the nurse, “I’m ready for that dignified death pill you promised.” “Oh,” she said, “now I understand what you meant. It’s too late to set that up, you’re so close to death now you won’t make it through the legal waiting period.” The patient: “You betrayed me!” Words matter, and death with dignity is too confusing to be an aid-in-dying synonym.

Myth Three: Medical Aid in Dying is “A Good Death.”

Chana Bloch, a widely-known poet dying from metastatic sarcoma, told me, “I know exactly how I will die—by medical aid in dying. I'm very aware of trying to create a good death. For me, and for my husband and sons—to show them a good death is possible.” Think of that responsibility. Chana’s death became another of life’s obligations, a self-imposed requirement to have “a good death”—for others, as much as for herself. I’ve heard that a lot from my patients. This strange new good-death obligation is a side effect of the new right to choose how and when you will die. But is taking medications to die the only way to show your family that you are choreographing a “good death,” with only one possible dance called aid in dying?

Has our aid-in-dying propaganda penetrated so deeply that Chana—a sophisticated poet who deeply examined the subtleties that produced her good life—believed there was only one route to a good death? Chana, like most terminal patients considering aid in dying, fought to stay alive as long as she could before choosing a date to take the lethal medications. Then she slowly faded from consciousness, into a good death, no poison potions involved. Which is not to say it would have been wrong had she chosen to take medications to hasten her death. It’s just that we who advocate for the choice of aid in dying have created the illusion that it is the only choice for a good death. It is not.

Major Improvements to the End of Life Option Act

by Judy Epstein | Oct 6, 2021 https://endoflifechoicesca.org/major-improvements-to-theend-of-life-option-act/ End of Life Choices is thrilled to share the long-awaited news that yesterday, October 5, Governor Gavin Newsom signed Senate Bill 380. This new law makes some badly needed adjustments to the existing End of Life Option Act in California, which was signed into law exactly 6 years ago on that very date by then Governor Jerry Brown.

These new provisions will become effective on January 1, 2022. Here is what will be different for anyone seeking Medical Aid in Dying in California in less than three months from now.

The new bill reduces the onerous 15-day waiting period between the required two oral requests, to 48 hours. This is a big change and will help many people access the law who couldn’t previously.

Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites. This will be extremely helpful in guiding people as to where they choose to receive their healthcare, especially if they are very sick or terminally ill and wish to request medical aid in dying.

The final attestation form will be completely eliminated.

This was a document that the patient was expected to fill out and sign within 48 hours prior to taking aid-in-dying medication.

If a terminally ill patient requests medical aid in dying and their physician does not wish to participate, the physician will be required to tell the patient they will not support them. AND, the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request.

The amendment also clarifies that medical aid in dying medication can be taken within a healthcare facility.

Lonny Shavelson, MD is chair, American Clinicians Academy on Medical Aid in Dying (acamaid.org).

WWW.SFMMS.ORG

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

21

Special Section: Palliative Care

RACIAL DISPARITIES IN PALLIATIVE CARE: Can We Be Honest?

Vanessa Grubbs, MD, MPH Let’s be honest. I’ll start.

When I landed a book deal with Amistad, an imprint of HarperCollins Publishers that focuses on writers of color, I feared being pigeon-holed as yet another Black physician only talking about race. We can be experts in and talk about other things, universal things, I fixated on. Furthermore, I believed palliative care when it came to end-stage kidney disease was a universal thing. The thing that applied to everyone because everyone must die. There’s a line in the book that tells on me and my mindset then1: “Dialysis has gone from a miracle to something mundane but to be avoided at all costs to the thing we Americans— no matter if rich or poor, Black, Brown, Yellow, or White— cling to, because it holds the promise of more time.”

Silly me.

Because of course race in embedded in palliative care too.

When I participated in the very first NephTalk, a several-day workshop patterned after OncTalk, I remember a peer saying something like, “Some of these families, there’s just no talking to about stopping dialysis.” I can’t remember if he specifically said “Black families,” but that he took furtive side glances at me and only me, that was certainly the implication.

Sure, a small study found that Black people in a primary care setting were less favorable to non-aggressive care and advance care planning than their White counterparts.2 And another study found that Black people with end-stage kidney disease were nearly third less like to use palliative services than their White counterparts.3 But the study findings are not the point. The point is who is blamed for these findings and how these findings are generalized to the entire community.

The blame in these studies and others is usually set squarely on the Black community. Specifically their religiosity and mistrust of the health care system. It’s true that a 2014 Pew Center survey found that religion was very important in the lives of Black participants, but it also found 25% reported religion was only “somewhat” or “not at all important” in their lives.

Tuskegee, or more accurately the United States Public Health Service study that chose to observe the natural history of Black 22

men for 40 years, 25 of which were after penicillin had been discovered, is most often targeted as the root of mistrust.

Certainly Tuskegee is a familiar tragic example of what the medical system is capable of, but to attribute today’s mistrust to that event, is to dismiss individuals experiences engendering mistrust in the medical system today and often.

I think many people can acknowledge interpersonal racism plays a role in creating race disparities in palliative care.

But no one sees themselves as the culprit. The disparities are always assumed someone else’s fault. But rarely have I heard anyone consider that the problem is us, the palliative care providers. That patients’ and families’ reactions have anything to do with how we approach, engage, or deliver our recommendations. That colleague certainly didn’t.

This is exactly why we should stop “implicit bias” trainings. They don’t work. A study of police officers showed that while short-term biases improve with implicit bias training, their actions—stops, frisks in stops, and arrests among Black people—stayed the same.4 And before someone suggests that health care providers are different because most of us got into this line of work to “help people,” the evidence indicates that healthcare professionals exhibit the same levels of implicit bias as the wider population.5 So what do we do instead? We should start with telling the truth.

Our medical institutions are racist, as is everyone in them in any position of power in any given situation to some degree. The power position may be just a rung up on our hierarchical racial caste ladder (where Black women are at the very bottom) but it is still a position of power. This includes palliative care. And if we could be honest about this truth, then we could get on with the work of undoing the racism. Pointing fingers isn’t getting us anywhere. Another research study is unnecessary.

Consider a house built with materials contaminated by mold.

Everyone is exposed in some way. The exposure in different rooms of the house may be non-uniformly affected, but all are still exposed. Just because one doesn’t see it, smell it, or has become physically ill because of it, doesn’t mean it doesn’t exist.

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

And just because we as individuals or maybe even our direct ancestors had nothing to do with building this house, by living in it, one assumes the responsibility of upkeep.

Similarly, our house—our health care system—is built upon a foundation of a hierarchical racial caste system. Therefore, it is racist by design and no one in it can be unaffected. If one is not personally affected, through structures that marginalize that group or through internalized belief that they or their group is inherently inferior, then one is either inflicting harm or standing by allowing it to happen.

So, if we would simply acknowledge this truth—rather than defending the innocence of one’s self or division or institution— we could get on with the work of fixing our house.

And by extension, fixing the house feels impossible if one imagines the solution is to demolish the house and build a new one. Though I often wish we could just burn it down and start over—the affected individuals remain the same and would only poison the new structure.

Therefore, start where you are. Disinfect your contaminated clothes, your contaminated skin. And then find a group to help replace a pipe, a board, one piece at a time—recognizing that if you’re not vigilant, the mold will sneak back onto your clothes and your skin.

Empathy is the solution.

While the pandemic has laid bare just how apathetic towards the needs of others if inconveniencing our “individual liberties” is required, providers can often empathize with the medical suffering people endure, even if we ourselves have never experienced it. (Well, at least when we’re not blaming the patient for causing it.) We can think things like, how awful the headaches that brain tumor is causing and how horrible that brittle type 1 diabetes must be. We don’t know for sure, but we can imagine ourselves in that situation and what it might feel like to us. Arguably, nobody displays such empathy more than palliative care providers.

But what about when it comes to race?

Here we’re more likely to refer to “them” and “these families” and apply some generalization, usually negative, to everyone we meet from that group. The generalization may be formed from whatever revisionist history we were taught in schools or the media. It may even be formed from an experience with a patient.

We rarely pause to consider how nuanced people are among the groups we encounter—just like the ones we belong to.

It’s time we start being honest. The integrity of our house depends upon it.

WWW.SFMMS.ORG

Vanessa Grubbs, MD, MPH is with the Department of Ambulatory and Preventive Medicine, Alameda Health System, Oakland, CA. drvanessa@thenephrologist.com, website: thenephrologist.com

References 1. Grubbs V. Hundreds of interlaced fingers: a kidney doctor’s search for the perfect match. New York, NY: Amistad an imprint of HarperCollins Publishers; 2017.

2. Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc. 2008;56(10):19531958.

3. Wen Y, Jiang C, Koncicki HM, et al. Trends and Racial Disparities of Palliative Care Use among Hospitalized Patients with ESKD on Dialysis. J Am Soc Nephrol. 2019;30(9):1687-1696.

4. RE W, SJ M, RS E, et al. The Impacts of Implicit Bias Awareness Training in the NYPD. The John F. Finn Institute For Public Safety, Inc. https://www1.nyc.gov/assets/nypd/ downloads/pdf/analysis_and_planning/impacts-of-implicitbias-awareness-training-in-%20the-nypd.pdf. Published 2020. Accessed October 6, 2021, 2021.

5. FitzGerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics. 2017;18(1):19.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

23

Special Section: Palliative Care

DISCUSSING THE UNSPEAKABLE: SERIOUS ILLNESS WITH AGING CHINESE PATIENTS Esther J. Luo, MD; Sandy Chen Stokes, RN, MSN and Deborah A. Szeto, MSN, RN, CCRN Discussing serious illness with aging Chinese patients is no easy task. Through this article, we hope to highlight key concepts in the Chinese culture, offer strategies to engage Chinese patients in advance care planning (ACP), and provide specific resources to promote further discussion among providers, patients, and families.

The Chinese Family Structure

Traditionally, the Chinese family has clear roles and responsibilities.

According to Confucian thinking, three of the five important relationships are focused on the family.

These include husband and wife, parent and child, and elder and younger siblings. The parents provide clothes, food, and shelter for the children. In return, the children are expected to be obedient to their parents including caring for them as they age.

In addition to these clearly defined roles, the Chinese family also has a collective identity.1 For example, an individual’s accomplishments bring pride and glory to the family name, while the mistake or misfortune of one individual will bring shame to the entire family. Lastly, the interests of the family supersede the interests of the individual.2

Filial Piety

In the Chinese culture, filial piety is one of the most important virtues, as illustrated in one of the most famous Chinese sayings, “Of all virtues, filial piety is the first” (百善孝為先). It is also a pillar of the traditional Chinese family structure, rooted in the principles of hierarchy, obligation, and obedience. To be filial is to respect one’s parents, elders, and ancestors. In the context of serious illness, filial piety also plays an important role in medical decision-making, ACP, and end-of-life care.3 When an elderly Chinese patient is diagnosed with a serious illness such as advanced cancer, the children are oftentimes involved in the medical decision-making process. Typically, the children’s desire is to protect the parent from the psychological burden of a serious diagnosis so that the parent will not lose hope and give up on life. Furthermore, the parent living with the illness may frequently defer medical decision-making responsibility to that of the children.4 24

Filial piety can also influence ACP. Naturally, the children of aging Chinese parents will want to fulfill their filial responsibilities of caring for their elders. Thus, the importance of understanding their parents’ values, goals, and medical wishes is paramount. In the Chinese family, adult children are often appointed as the health care agent and the medical decision-making process is family-based rather than individual-based. It may be helpful for parents to role model and start the discussion knowing this topic may be difficult for the adult children to initiate on their own. As children, initiating this type of discussion can help them understand what matters the most for their parents so that the children can take better care of their parents.

Lastly, filial piety plays a role at the end of life. One study conducted in Taiwan on patients’ preference of death indicated that greater than 90% of study participants did not want to be a burden for the family.5 At the end of life, ways in which filial piety is exhibited include the practical help that can be provided as well as making medical decisions related to forgoing life support, discussion about hospice, making sure care is focused on comfort and alleviating suffering.

Strategies to Engage Chinese Patients in ACP

Providers should be willing to use creative strategies to engage Chinese patients in ACP. It may be helpful to frame ACP differently, with less focus on autonomy and more as a way to reduce family disharmony or burden while also promoting filial piety.6 Some Chinese patients may be averse to more formal or structured conversations and may prefer to use more indirect methods of communication. Using examples of serious illness in family or friends and case studies, as well as encouraging storytelling are less threatening ways to initiate ACP conversations.6,7 Providers should also create intentional opportunities to engage Chinese patients in ACP discussions. Research has demonstrated that Chinese patients do have favorable attitudes toward ACP, particularly after receiving education.7-9 The lack of desirable opportunities may actually be one of the most significant barriers.7 To illustrate, Chinese participants in a study examining beliefs about ACP made statements such as “We need

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

an appropriate [safe] opportunity” and “I just never found the right moment to initiate the conversation.”7 Importantly, due to family dynamics and cultural norms, most Chinese patients— both older and younger—often prefer for healthcare providers to begin ACP conversations, versus having to bring the topic up themselves.8,10,11 As many Chinese patients hold healthcare providers in high regard, this respect and trust acts as a facilitator for ACP discussions.11 Though perhaps most evident, the utilization of culturally appropriate ACP materials and Chinese language assistance cannot be emphasized enough. Since participating in an often emotionally draining conversation that can include unfamiliar medical terminology would be understandably challenging, language barriers would likely only complicate matters. In one study, Chinese participants expressed difficulty in engaging in ACP due to the lack of language concordance and appropriately translated forms.7 Accordingly, providers not fluent in Chinese need to utilize professional language assistance for patients whose primary language is Chinese. Forms and educational materials should also be provided in patients’ preferred language, keeping in mind preferences between simplified and traditional Chinese. Lastly, simply providing educational materials may be insufficient to achieve advance directive completion.12 Therefore, arranging for hands-on guidance and follow-up support to facilitate the completion process (e.g., clarifying confusing terms, offering notarization or witnesses) can be very effective.12

Chinese American Coalition for Compassionate Care and Relevant Resources

Founded in California in late 2005 to address the lack of linguistically and culturally appropriate information in the Chinese American community, the Chinese American Coalition for Compassionate Care (CACCC) is the first and only coalition in the US devoted to end-of-life care for Chinese Americans. The coalition consists of over 200 local, state, and national partner organizations and approximately 3,000 individual members supporting the mission: “To build a community where Chinese Americans are able to face the end of life with dignity and respect.”

CACCC is a coalition of trained bilingual Chinese volunteers with an interest in end-of-life care and aging, and end-of-life care professionals from different backgrounds who are committed to improving culturally competent care for this community. CACCC emphasizes the importance of bringing as many people to the table as possible—diverse professionals, community leaders, and members, and organizations that serve Chinese Americans—and dedicates portions of its meetings to educate coalition members and volunteers, as well as plan projects.

To fill the lack of end-of-life materials in Chinese, CACCC’s translation team translated the California Advance Healthcare Directive into Chinese and modified it to better fit Chinese cultural norms. Additionally, 11,000 copies of CACCC’s DVD presentation in Mandarin and its accompanying 50-page booklet in Chinese, Advance Healthcare Directive & Hospice and Palliative Care, were distributed free of charge. Visit www.caccc-usa.org for more information.

WWW.SFMMS.ORG

references on request

Other resources developed by the CACCC include: • CACCC’s Heart to Heart® cards and Heart to Heart® Café: Heart to Heart® Café is an Advance Care Planning group activity which makes use of Heart to Heart® cards to facilitate discussion about end-of-life issues. https://www.caccc-usa.org/en/activities/heart2heart.html • “Loving Life - Understanding Hospice”: This video was created by CACCC, under contract with the Hospice Foundation of America through a grant from the Centers for Medicare & Medicaid Services (CMS). https://youtu.be/HL84zrwcZoU • Learning to Let Go: Saying Goodbye Peacefully: This book discusses Chinese Americans’ attitudes, choices and experiences at the end of their lives, as well as the perspectives of family members, volunteers, and health care professionals involved in end-of-life affairs. This book offers insight on a peaceful and guilt-free death. https://www.caccc-usa.org/en/resource/documents.html • “Kathy & Windy”: This documentary film features a mother and daughter’s journey confronting mortality. The Kathy and Windy story sheds light on how we can prepare for and navigate the final chapters of our lives with direction, purpose, and confidence. https://youtu.be/R_I0f134eUQ • CACCC translation of Coalition for Compassionate Care of California’s Decision Guides about life-sustaining treatment: Artificial Hydration, CPR, Tube Feeding, and Ventilator. https://caccc-usa.org/en/resource/documents.html • CACCC translation of The Conversation Project’s Conver sation Starter Guides. A Conversation Starter Guides for Caregivers of People with Alzheimer’s or Other Forms of Dementia, Your Guide to Choosing a Health Care Proxy, Your Guide to Being a Health Care Proxy, Your Guide for Talking with a Health Care Team, What Matters to Me Workbook, and For Caregivers of a Child with Serious Illness. https://caccc-usa.org/en/resource/documents.html Esther J. Luo, MD, works in Palliative Medicine at Santa Clara Medical Center, Kaiser Permanente; Sandy Chen Stokes, RN, MSN is Founder & Board Member Chinese American Coalition for Compassionate Care, and Deborah A. Szeto, MSN, RN, CCRN Works in Palliative and Critical Care.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

25

Special Section: Palliative Care

PALLIATIVE CARE AND OUR COMMUNITY Victor Kwok, MD and Joseph Woo, MD

“The remedy for dirt is soap and water. The remedy for dying is living.”

– Chinese proverb The essence of Palliative Care Medicine is to provide care to patients with the goal to relieve suffering. On the surface, it seems that for health care providers, providing relief of discomfort is what each of us do on a daily basis, and is the basic reason we chose to dedicate our careers to medicine.

However, understanding our own cultural challenges has been a unique obstacle for those of us in the Chinese Community. Generally and historically, the topic of end of life has been taboo for our patients. It’s considered “unlucky” and any discussion of death or illness is the harbinger of bad fortune. In 2020, AAMG, which currently serves a predominantly Chinese demographic, had only 2% of its patients with CPT codes for Advanced Care Planning (ACP). Also, in a 2021 survey by the Learning Journeys Chinese Workgroup of 230 Chinese Seniors, only 1/3 had any familiarity at all with the concept of ACP. Clearly we need to do better, but how? Perhaps consideration of some differences between Chinese and Western attitudes may be a helpful place to start.

First and foremost, Filial Piety is a core value closely held by many of Chinese heritage. Based in Confucianism, filial piety is a moral principle that is deeply rooted in Chinese traditions.

Loosely, it’s described as respect and responsibility to care for one’s parents, but it is far more complex than that. Intertwined are feelings of obligation, devotion and self-sacrifice. Whereas in Western culture, it seems that youth and individualism are important attitudes, in Asian cultures, respect and responsibility for one’s elders are key values.

Also, the importance of family cannot be underemphasized.

Frequently, Bay Area Chinese households have more than one generation living under one roof. Thus, when decisions are to be made, we must be prepared to look through the lens of the family and caregivers. Clearly there tends to be an interdependence among Chinese family members and a tendency to make decisions as a family instead of individually. Interestingly, our medical training mandates honesty in providing information to our patients. However, it remains common with a substantive diagnosis, for children to request that doctors don’t tell their parents; a notion abhorrent to Western providers. But from the perspective of the elder, the attitude is often to let their kids 26

make the decisions. “They know what I want” under this subtext of filial piety. And a sense of obligation from the children may lead to the desire to “never give up.” In fact, it is not unusual that there is social pressure from extended family members placed on these dutiful children to choose curative options at the expensive of quality of life. A decision other than that may be seen as a dereliction of their duty.

Moreover, our Chinese population is often uninformed of the availability of palliative and hospice care. Many of these elderly are monolingual first generation immigrants and have limited knowledge of these concepts. Further complicating the situation are issues common to other ethnic communities including a poor understanding of illnesses or procedures, language difficulties, and lack of culturally sensitive providers/ services. In addition, physicians must accept that many of our patients utilize Traditional Chinese Medicine adjunctively with Western modalities.

These cultural differences have been recognized by many and there have been some recent successes in the Bay Area.

The Chinese American Coalition for Compassionate Care has a program utilizing a deck of cards whereby each card indicate a Senior’s wishes as a communication tool to open discussion with their family. They conduct seminars called “Heart to Heart Café”. This tool has seen success particularly among Mandarin speaking Chinese in the South Bay. There is useful guidance on their website: www.cacc-usa.org.

Similarly, we have been involved with the Learning Journeys Workgroup (sponsored by the Stupski Foundation) to improve the prevalence of ACP in the San Francisco Chinese Community.

Through this collaborative effort of community-based organizations, a new method was developed. Focus groups showed us that the best approach starts with a video story to spark thinking about ACP. We borrowed from a Cantonese Hong Kong production utilizing a popular actor who resonated with a majority of our audience, recognizing him as “an old friend.” We follow with a comic pamphlet based on a Chinese traditional concept that dates back thousands of years—The Five Blessings (longevity, wealth, health and composure, love of virtue, and good death).

Participants go through the brochure with the life journey of the

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

main character, Grandma Blessing. She talks about such things as: What brings you the most joy and happiness? What are some good memories you would like to leave to your family and loved one? And finally, What does a ‘good death’ look like to you? Eventually, Grandma Blessing introduces the concept of advance care planning. Since our patients love swag, we also produce seriesbased giveaways such as mugs and pillows for participants to have a reminder of this discussion. These initial seminars are followed by individual community counseling efforts. AAMG is currently expanding this outreach with the aid of Self-Help for the Elderly.

Many hospitals today have developed palliative care teams.

According to the Center to Advance Palliative Care, more than 77% of California hospitals now have a palliative care team.

These teams maybe comprised of palliative care specialists, specialized RNs, social workers, physical therapists, chaplains, volunteers and even acupuncturists reflecting the multidisciplinary needs and complexity of caring for patients with serious illness. Many studies have now confirmed that palliative care is associated with better quality of life, better patient satisfaction, less depression, better symptom management and even longer survival. In our community, the Chinese Hospital has its own culturally sensitive team with outreach through its health resource center and its clinics. Sutter Health offers a service called Advance Illness Management (AIM) which accepts referrals for outpatient consults as well as home services. The palliative care team will evaluate the patient and determine qualification to the service and form a care plan for the patient.

Further, our community PCPs, performing Advance Care Planning, are integral to preparing patients for the future. ACP can be performed over many clinical visits. We ask our doctors to revisit routinely as a patient ages or their health status changes.

Culturally sensitive providers allow patients to have the opportunity to share their values, their preferences for medical care and their desires for future care. It is also a good opportunity to provide a health care proxy and completing a POLST.

WWW.SFMMS.ORG

Lastly, since the fastest growing segment of our population is seniors over 65, a larger percentage of the population will be living with chronic illnesses. At the community level, we see a need to bridge communication gaps; between providers and patient, between patient and family, and to understand that families are a major part of the decision process. But much work is left to be done within the Chinese Community. A respect of patient dignity, recognition of Asian mores, and a culturally sensitive approach are invaluable. Going forward, we advocate for earlier intervention and more personal care. Ultimately, this process should be self-sustaining as patients utilize fewer futile modalities. Frequently, cognizance leads to more realistic choices, fewer trips to the hospital, less unnecessary chemotherapy, and a higher likelihood to be enrolled in palliative or hospice care at the end of life.

Dr. Victor Kwok is a community Internist/ Geriatrician in the Sunset District who is with the All American Medical Group and Chinese Community Healthcare Association. He was previously Medical Director of Self-help for the Elderly.

Dr. Joseph Woo is an Emergency Physician, President of the All American Medical Group, and Board member of the SFMMS. He is a participant in the Learning Journeys Workgroup to improve Advanced Care Planning in the Chinese Community.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

27

Special Section: Palliative Care

RECONCILIATION: A PRACTICE IN LETTING GO Kissiah Young, MSW Nothing lasts forever, particularly life. Its duration unknown to all.

Each day moves then fades into the next until the next is the last. This thing called life must be the greatest magician. We are here and then we are not. We appear then disappear.

Maybe we see death coming; given a diagnosis and know that it is en route. Maybe not. Often it arrives like a thief in the night and takes us from ourselves leaving behind fingerprints of grief. But what about the undoing, the life that slowly unravels when the floodgates open?

What happens in the space between living and being told that you are dying? Hope. It seems hope creates a crack just wide enough for the light to get in.

Cancer has long been a thief, robbing unprovoked. Yet it seems to remain insufficient a cause to contemplate dying. Death has always been separated from self—other than, not applicable; it’s ‘out there somewhere.’ And so, to consider death intimately feels warzone foreign. Why would we do that? Even cancers that seem to be synonymous with death—to the diagnosed— are never synonymous with dying. Without missing a beat our mind seeks to minimize the diagnosis, make cancer manageable.

We start pulling out all the IOUs due us. It’s time to cash in, get well stocked and armored to fight forward. We access our hope card. “Dear God,”—it may begin, followed by stressing how we’ve done our best to fly under the radar. We haven’t asked for much, and now need a favor. We bargain. Death remains too distressing to consider.

As a medical social worker, I exist in the gray with patients.

Thoughts, feelings, confusion—the existential—fall outside of the black and white keeping me closely connected to a patient’s inner process. It isn’t linear, and at times may not appear to make any sense. Yet it is real. The journey of one patient continues to linger with me more than two years later. Something about its push-pull—open then contract only to open again then contract—nature affected me. It also intrigued me. It made me think about how in an instant any one of us could go from who we are to the struggle found in reconciling the before diagnosis with the after.

28

An Anomaly Niko was a sensitive man in his early 40s with an affecting spiritual life. He and I connected from that very first clinic visit, pre-pandemic back when hugs took place—we exchanged hugs. “I’m an anomaly,” he told us in that initial visit. “I’m not going to be like any patient you’ve ever had.” He was right. He had a certain stillness. His presence felt intentional. As a therapist, Niko centered his life work around redefining masculinity and healing generational trauma. He was intrigued by the mystical and practiced connecting the dots of life to discover the meaning of things. Niko extended this same practice to his cancer diagnosis. It was to be part of his spiritual journey. Through tears he’d worked hard to allow himself to have, Niko talked about his pain. It was physical. It was existential. If only he could understand the source of his diagnosis—make some connection to any traumatic tethering—then he could work to undo it.

There are some things in our lives that haunt us. They are like shadows we cannot get away from, a dark lingering that threatens. We forget, or perhaps do not realize, that the only way for the shadow to disappear is to fade into it. Become one. Niko sought to become one with this illness. He was curious about it; tiptoed in the shadows to understand. He also sought to fight against it, and win.

Diagnosis: Stage IV pancreatic cancer

Of all the cancers pancreatic is there alongside a few others at the top of a common "do not want” list. It’s one of those cancers typically synonymous with death and arrives with one message: poor prognosis. There are things that patients do not know that certain medical providers know so well it startles: the trajectory of disease with or without treatment. Often the urgency fast-forwards time. While the doctor plans the course of treatment the patient scrambles to connect the dots. Hope unable to establish rapport. It gets pressed against pervasive symptoms and treatment. There isn’t enough light coming through the crack to hold it all.

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

Niko often deviated from the norm though not as he’d imagined. It was more like a train track askew just enough to tilt toward tipping. Pain. Nausea. Diarrhea. He had it all. Nothing seemed to work the way it was supposed to. His body abandoning him. His experience curious because his symptoms didn’t match the scans that at times showed “stable” disease. Each day arrived toting the unknown. Unable to predict symptoms or mood, anticipatory anxiety became anxiety itself. The light in his eyes dangling edge close. Everything was wearing on him. The sense Niko sought to make of his illness began to take too much energy. Curiosity requires presence and he needed to conserve.

Prior to being diagnosed Niko had experienced periodic pain and noticed some weight loss. He didn’t necessarily feel like himself, yet there wasn’t anything that struck him as alarming.

Until there was. We do that sometimes, don’t we? We feel something, hear something, see something and we let it pass. It’s an afterthought. No big deal. Then it returns like a boomerang. Persistence has a way of getting its needs met. There were days, no more than a few at a time, when an opening would be created, and he could catch a break. Joy existed in those moments even as the shadow lingered, and the hauntings happened. Death still hovered juxtaposed to hope exploring itself.

It is no small practice reaching somewhere deep within to access happiness when the truth is you’re being haunted. When do we learn to compartmentalize? At times Niko would lie on the couch in a fetal position holding his physical pain along with the anguish of all that would never happen. The momentum of what would be his life’s work was just picking up. There were so many plans and the excitement that comes with happy anticipation. It would all go undone. I wonder of the receipt of its landing, that moment of reckoning. He was sad. It was sad. With time Niko’s suffering grew steadier than his happiness. Yet the light in his eyes dangled still as he continued to practice being with dying.

To reconcile life at the intersection of death usually takes time. Fewer people are ready to exit this grand experience. It’s a process that each person arrives at (or not) in their own way.

WWW.SFMMS.ORG

Reconciliation involves true looking, turning toward rather than away. It’s different from hope. Where hope involves wanting something to be other than it is, reconciliation is a practice in acceptance even when accepting means letting go. Rather than fight or swim against the current, we consciously allow the current to carry us. There is no manipulation or directing the course. We give in to allowing and this reduces our suffering even when the pain continues.

Eventually, Niko gave in. He didn’t quit. He allowed. As a truth seeker, it was a path he was destined to take. That happens when we turn toward and enter in. Niko had always wanted to find the source, find the meaning to it all, and with time he found a way to do just that. His spiritual path took him on a journey inward where he accessed a level of understanding that released him from any holdings. His hope evolved to peace.

There was no longer cause to fight against what was happening.

He had won differently.

Letting go

There is no manual for dying, no guide that leads us down its steep and narrow road. We walk. We pause. We accept in fits and starts, and we deny in the interim; still everything moving us to life’s end. Consciously or unconsciously, we are releasing everything. Some things—like death—not a tight grip can hold.

This is the natural in and out flow of life. This is also one of the biggest practices we will face: letting go. What an honor to be in the throes of that imperfect practice.

Kissiah Young, MSW is a medical social worker in Outpatient Palliative Care with Kaiser Permanente San Francisco. Her background runs the gamut from academia to hospice care.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

29

Special Section: Palliative Care

AMAZING GRACE IN NAVAJO NATION Jessi Humphreys, MD Driving onto the reservation in New Mexico, we avoided the recent snow turned to ice on the edge of the red dirt road. It was late morning as we walked into the house, passing a fluffy white dog, medical cooler slung over our shoulders. As a volunteer doctor working at Gallup Indian Medical Center, I joined an amazing medical team tirelessly caring for patients in Navajo Nation, one of the hardest hit areas in the country with COVID-191. The team was braving a snow storm to bring the vaccination to patients too frail to travel to clinic.

Winding through the house, past richly woven blankets on the couch, we found our patient, an 89-year-old grandmother, swallowed up by her cushy chair. “Ya’ at’ eeh Shima,” I tried my best attempt at the impossibly beautiful Navajo language. “Hello Grandmother.” She finished her oatmeal out of a Nightmare Before Christmas Jack Skellington mug, eyes glued to the inauguration on the screen. Her daughter refilled her coffee and sat on the bed in the room, watching enrapt with us.

As soon-to-be Vice President Kamala Harris stood to take her oath, I knelt to the ground and pulled on purple medical gloves, ready to prepare the vaccine for our patient. I froze, as she said “that I will bear true faith and allegiance…” holding the COVID-19 vaccine vial in my hand. Overtaken, and breathless, we watched the screen together.

Tears ran down my face and my chest quivered as I silently sobbed, my nose running under my thick N95 mask. I joined the room in wiping our eyes. All of us glanced up at the clock face on the wall, emblazoned with an American flag and eagle in midflight. We knew one day we would tell our children where we were in this moment.

We bowed our heads and prayed for the patients who already lost their lives to COVID-19. As a palliative care doctor, I help carry patients and their families through serious illness. It has been a disorienting year, caring for hundreds of patients, but I have been lucky to work alongside true heroes in New York, San Francisco, Los Angeles and New Mexico.

The deaths have been overwhelming and I can now only remember bits and pieces of this fever dream. The poet who read her daughter a final poem through a phone I held up to her to say goodbye; the young father leaving four children under eight years old behind; the grandfather who touched his silver braid and then my own silver part, showing me how his grandson pulls on his hair when he sits on his lap; the young woman with developmental delay whose only contact with her family was a doll they dropped off, to be snuggled in her hospital bed in the dark. I’ve cried too much, and I haven’t cried for everyone yet.

I unpacked supplies and mixed the vaccine, drawing it up with a small needle, laying out our band aid and alcohol swab. We answered questions and ensured there were no contraindications.

30

I prepared my patient’s arm, and gave her the shot, running through the simple motions like the Nutcracker ballet I performed countless times as a child. She smiled and told me she didn’t feel a thing. She might have been lying to me, but I loved her for it.

Around our patient’s mirror were dozens of snapshots of grandchildren. A beautiful girl in a green soccer uniform. A toddler in a reindeer fleecy on Santa’s lap. Maybe she would see them all soon.

On the screen, President Biden said, “We must end this uncivil war,” and I unfolded my patient’s shirt down over her band aid. We are doing our best. We sung Amazing Grace together, patient beside provider, human beside human. Even muffled by masks it was perfect.

As we walked out of her room, I touched a Cracker Jack sticker on the wood, placed next to The Lord’s Prayer and a handwritten sign that said: “You are safe Grandmother. You don’t need to go anywhere. We love you.”

There are few moments in life that are both quiet and shatteringly enormous. Perhaps after my son came into this world, I felt that. Perhaps the first time I knew a patient’s spirit was leaving her body, when I knelt down bedside her bed, sitting with her last breath. Perhaps the moment I became a doctor, was handed a stethoscope and felt the enormity of the responsibility and honor.

But in this moment, I felt it. The layers of grief, and relief, and every ounce of intensely painful unbridled hope.

I drove away in my car to the words of Amanda Gorman on the radio as she commanded even the air particles around her, hoping my son will grow up studying her words, that our children might lead us out and up.

I believe vaccinating this beloved grandmother was the beginning of many more grandmothers, that we will begin to care for the true tapestry that makes up our country. Tears burned my eyes as I drove, and I sent her love.

And above all, I sent hope. Hope. Hope. From this tired doctor on the edge of breaking, hope.

Jessi Humphreys, MD, is Assistant Clinical Professor, MSP, UCSF Division of Palliative Medicine.

References 1. https://www.nytimes.com/2020/12/27/business/economy/the-place-hit-hardest-by-the-virus.html

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

PALLIATIVE AESTHETICS: FINDING OUR WAY INTO THE EYE OF THE BEHOLDER BJ Miller, MD I want to feel alive more than I want to be alive. My patients and their families do too. Let this longing be what fills the space between us, the subjects and the objects of care. This essay is directed at the human being in each of us, whether we’re playing the role of patient or doctor.

If you ask me, all physicians are palliative physicians at heart and by oath. As a palliative physician, per se, my job is to see patients in all manner of anguish. Suffering is the beginning. We start with feet that have gone numb or tingly. Or maybe nausea. Fatigue is probably most common of all. Or maybe the patient is feeling mostly fine, but the family is burning out. There is always something for us to do.

Eventually we get underneath the angst to its source, where the bigger issues lie. Connection, appreciation, realization, and everything else meaningful that can go lacking when you’re distracted. But down here, we have our opening: where in your day do you feel the slightest bit OK? When do you feel right with the world, even for a moment? What’s happening then? Illness is discombobulating to the point where it can be hard to find the ground. Answering these questions helps light a way.

For many, it’s time with family or friends. A certain activity: the movies, music, their art studio, driving, swimming, being in their garden. Maybe it’s at work where they finally drop in for a moment. Almost invariably, people’s answers to these questions have two things in common. One, they comprise a sensation. More than just the garden or the movies, what registers is how they feel being in the garden or at the movies. The emotional and the physical. Second, these sensations always hold their own significance for the patient, regardless of any other purpose the activities might serve. Purpose is good, but it’s not necessary.

Here is where means and ends meet. In other words, these questions and answers bring us into the realm of aesthetics.

Does that register with you? It might not. That word ‘aesthetics’ has gone wonky. White teeth, smooth skin, Italian art, sunsets when the clouds are just so. The word ‘aesthetic’ is more typically reserved for these sorts of things. Something subjective and of a particular taste: exotic, special, arty. Furthermore, to use a word like ‘aesthetic’, you might presume you need special glasses, like graduate degrees or secret pass codes. But here’s the real secret: you don’t. You don’t even need to think.

WWW.SFMMS.ORG

As a force for breaking through, illness is helpful, shredding layers of shellac that build up over time, obscuring a person. The gum and goo of expectations, roles we think we must take on to be recognized, all the while suffocating our real core: the thing of us that receives more than it sticks out. Illness is also a foil. It dials up the contrast, so that beauty and the other bits of ease can pop. But let’s not give illness too much glory. You don’t need to be amidst loss to appreciate something. You don’t need to exaggerate the contrast. Nor do you have to be ill to fall apart. Modern life will give you a luxurious number of opportunities to do so.

In other words, you don’t need an excuse to be affected. You just need a little courage or a shove. From what we see with people at the edge of their lives, being affected by life is one of the finest ways to prepare for it to end. Regret tends to pool around the unmoved bits.

For all our lurchings, our charge is the same as it ever was: to feel with this body while we can. To do so, all you need is one of the following: sight, sound, smell, taste, touch, or intuition. The world has much more to offer than a small selection of pretty things, and, as long every bit of us is welcome, we humans have so much more capacity to handle it all than perhaps we realize.

In the realm of aesthetics, we’re freer than we think. The aesthetic is generous and inclusive: anything that intensifies the immediate sense of living. That’s how John Dewey, philosopher, psychologist, and educator defined it. There’s no time required, and no memory either. Just a direct sensation piquing life in you.

Or, to be even more inclusive, take Frank Zappa’s definition of the aesthetic: anything, anytime, anywhere.

Gaps so easily widen between the world we have and the one we wish for. This is the price we pay for having imagination. That pain is nothing new, but nowadays we have a gap that’s only widening and at an accelerating pace. The times are at once so challenging and so promising. Ever more seems possible—virtual realities, intimacies from afar, instantaneousness, simultaneousness—but it turns out ever more isn’t really possible after all. Surely, all these new developments have their aesthetic potential too. But for most of us, they arrive faster than we’re able to make the receptors required to experience them.

The tonnage is overwhelming to the point of anesthesia. It gets harder to know what we have, and harder to feel in time.

continued on page 32

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

31

Special Section: Palliative Care If we’re not careful, we’ll look past all that’s in us and in front of us, busily seeking what we already have, earnest with furrowed brow and wild hair. And all the while time is counting down. The eyeglasses we’re looking for are sitting right on top of our sun-spotted heads. Stained teeth, graveled skin and dark skies will do. These things have every bit as much aesthetic potential as anything else. It’s your prerogative to say what turns you on and improves life for you. Just be sure to linger a moment before picking the words.

Being turned on—enlivened—when coupled with a moral sense and aptitude for truthfulness, is one of the kindest things you can do for yourself and everyone around you. It seems more like a responsibility now than mere recreation or an academic pursuit. You glow, even through thickened skin. You make light, especially if you know darkness. You love. Maybe aesthetics offers the activism of our time.

You don’t really have to have an adjective, but if it’s beautiful that you need—I know I still do—remember that it’s you who makes anything so. In the eye of the beholder, yes indeed, and in the fingertips, nose, ear, tongue, and mind too.

BJ Miller is an American physician, author and speaker. He is a practicing hospice and palliative medicine physician and is best known for his 2015 TED Talk, "What Really Matters at the End of Life." BJ has been on the teaching faculty at UCSF School of Medicine since 2007.

He sees patients and caregivers through his online palliative care service, Mettle Health.

His book for approaching the end of life, A Beginner’s Guide to the End, was co-authored with Shoshana Berger and published in 2019. BJ formerly served as Executive Director of San Francisco’s Zen Hospice Project.

COMMUNITY APPROACH TO ADVANCE CARE PLANNING AND PALLIATIVE CARE IN SAN FRANCISCO Jeffrey Newman, MD, MPH

Since we announced our community-based initiative in the April 2015 issue of this Journal, our volunteer San Francisco Palliative Care Work Group—supported by the SF Department of Disability and Aging Services—has initiated a variety of activities to promote advanced care planning (ACP) and palliative care (PC), especially in diverse communities in which they are underutilized.

These have included presentations, training sessions on ACP, and liaison with provider and community service organizations. The COVID-19 epidemic has heightened the need for ACP and PC, and we applaud the heroic efforts of physicians, nurses, social workers, chaplains, and others who have optimized patient decision making with family/partner participation.

This year we have been funded by the Stupski and Hellman Foundations to initiate tailored assessment and outreach of ACP programs for Chinese, Latinx, and African American Communities. We are currently evaluating the results of these initiatives.

Initial observations include: • While older and seriously ill patients usually want to understand prognosis and treatment alternatives and to involve family members and partners in medical decision making—they frequently encounter educational, cultural, and language barriers.

• A striking example is the suspicion (especially among many African Americans—echoing the infamous Tuskegee study of the natural history of syphilis) that palliative care may be used as a replacement for curative care.

Our initial innovative and culturally appropriate community education and family/partner engagement approaches to ACP 32

(and PC) have been well received. We look forward to further development, evaluation, and dissemination. In addition, we seek closer collaboration with medical, spiritual, and community service organizations.

I believe that SFMMS could play an even greater role in promoting ACP and PC in our communities. As patients age and/or develop chronic disease, primary physicians (as well as other clinicians) should routinely assess patient understanding of prognosis & treatment alternatives (which may become increasingly compromised by cognitive impairment and dementia) and readiness to identify alternative decision makers. A single patient visit with family and/or partner may expedite joint decision making. This is consistent with the Osler dictum: “To know our patients is more important than to know their disease.”

Referral to ACP programs in our systems or online e.g. https://prepareforyourcare.org/en/welcome may be sufficient to start the Advance Directive documentation process. For complex serious illness, early PC consultation improves overall treatment and outcomes—without compromising other appropriate medical and surgical interventions.

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

Jeffrey Newman, MD, MPH specializes in Preventive Medicine. He is Professor at UCSF Institute for Health and Aging and Co-Director of the SF Palliative Care Network.

WWW.SFMMS.ORG

STORYTELLING IN PALLIATIVE CARE Monique Schaulis, MD, MPH, FAAHPM

Dr. Jessica Nutik Zitter, MD, MPH, intensive and palliative care in Oakland, is a national advocate for transforming the way people die in America, and is the author of the newly released Extreme Measures: Finding a Better Path to the End of Life. She co-directed and produced an award-winning short documentary, "Caregiver: A Love Story," which examines the rising public health crisis of family caregiver burden through the story of a man as he cares for his wife in the last nine weeks of her life. SFMMS President Monique Schaulis, MD talked with her about her perspectives.

MS: Let's talk about storytelling and palliative medicine. You’ve done a lot of this in your films and books, most recently “Caregiver: a Love Story.” Part of what we do as palliative physicians is draw out a person’s story, and that is a necessary step in caring for patients.

JZ: It's the necessary step. You can't tell compelling stories without the “little” details. I don't have data to support this but I think that people who would choose to go into palliative care are those who are inspired and energized by people's stories and the connections around the telling of those stories. That's a big part of what we do in palliative care. Even as an ICU doctor, that was a tendency that I had, which was very anathema to the world of ICU medicine for the most part, which is so technically focused.

MS: Plus, everyone in the ICU has tubes in their mouths! Often they can't talk to you. Jessica, have you ever had the feeling that extracting the story is selfish?

JZ: Sometimes I feel this, but then I remember that it forms a human bond that is essential for being a good health care provider.

MS: Yes, these stories that you gather allow you to represent the patients more fully. When I read my palliative care notes, I see that I'm trying to tell the human story in the hospital chart in an attempt to help everyone know the patient better, to go beyond their diseases. I don't know if anyone wants to read the story I am writing, perhaps they might just want the recommended pain plan. But sometimes my colleagues seem drawn in by these details and it engages us all more deeply in patient care. Recently I was writing a note about a patient who told me that he actually didn't want to be intubated. Why? I asked. He told me it was because Vicente Fernandez, his favorite Mexican singer, was on a ventilaWWW.SFMMS.ORG

tor. The patient and his wife had seen this and talked about it and decided they wouldn’t want to live that way. But those were the “little” details you were talking about before which told me a lot about him.

JZ: This idea that we had in training was that there was a sort of separation of the human and the science. And it was all about the science. It was like bringing the human, the religion, spiritual and the social issues in somehow cheapened our scientific efforts.

I know I felt that way. And I know that it's only through the palliative care experiences I've had and through particularly my mentor chaplain Betty Clark, who says to me all the time, “Everybody has a story.” It took many years and I did have to come a little bit kicking and screaming into understanding the therapeutic experience for patients.

And also for physicians and healthcare providers of connecting on a human level at the bedside. I don't think that you can do good medicine if you're not connecting in some way whether it's praying if a person wants to pray, or hearing their story, or looking at a picture of them at the bedside. That's what makes for a relationship that allows for healing. Healing includes scientific medical interventions, but it also includes acknowledging a person's story, and personhood.

MS: Yes, it is making them be seen. A critical skill in palliative care.

Speaking of being seen, I’d love for our readers to be able to see your film Caregiver. What’s the easiest way to see it?

JZ: Checkout the website caregiveralovestory.com for screenings around the country or if you’d like to host one email caregiver@ jessicazitter.com.

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

33

Special Section: Palliative Care

SFMMS INTERVIEW Monique Schaulis, MD, MPH, FAAHPM Dr. Schaulis interviews Alex Smith and Eric Widera, hosts of GeriPal: A geriatrics and palliative care podcast for every health care professional.

We invite the brightest minds in geriatrics, hospice, and palliative care to talk about the topics that you care most about, ranging from recently published research in the field to controversies that keep us up at night. You'll laugh, learn and maybe sing along. bigger to make a difference. Most of our listeners are health care providers who want to change the world for older adults and for those living with serious illness, even if it is one patient at a time. If we can help them with that, even just a little bit, for me that’s the big idea for this podcast.

MS: First of all, I’m a diehard fan. I’ve been listening for years and find GeriPal to be an incredible source of up to date information that is really entertaining. Thank you for all of your amazing interviews! Can you tell us about how you got started?

AS: We started the GeriPal blog in 2009 as a way to integrate the fields of geriatrics and palliative care. There was some friction between the fields at the time, “turf wars” over fellows and clinical service. We felt strongly that geriatrics and palliative care have more to learn from each other and can accomplish more together than separately. Our blog was targeted at health care professionals in geriatrics or palliative care. About five years ago we decided we wanted to go in a new direction and explore podcasting. Since then, we’ve expanded our intended audience, and our new tagline is “A Geriatrics and Palliative Care Podcast for Every Healthcare Professional.” Our goal is to educate all healthcare professionals about cutting edge issues related to the care of older adults and patients living with serious illness.

MS: Did you have any idea at the beginning how big this podcast would become? How has it evolved over time? How many followers do you have now?

AS: We had no idea how big it would become. At first, when we were a blog, we wondered, “Is anyone reading this?!?” When we transitioned to a podcast, we again wondered, “Will anyone listen?” We’re so pleased that there is an audience for our work (and it does take work to set up, research, and produce each episode). We currently average between three to five thousand downloads per podcast, about twice the size of a plenary session at an annual meeting of the American Geriatrics Society or the annual assembly of the American Academy of Hospice and Palliative Medicine. We’re growing rapidly, and have gained about 1,000 listeners per podcast over the last six months alone.

EW: I wouldn’t say we're big, as we get about 3,000-5,000 listeners per podcast episode. But I don’t think you have to be 34

MS: How do you choose whom to host? Do you peruse the latest journal articles and just call them up?

AS: We are constantly monitoring the literature for articles that take a fresh look at issues, that tackle common clinical issues, or that bring real world practical advice that clinicians can use in everyday practice. We email the authors of studies or speakers we’ve heard at conferences. I can count on one hand the number who have said “no,” and we’ve recorded almost 200 podcasts at this point.

MS: For me, the music really changes the feel of the episodes.

What do you think?

AS: I’m biased, but I love the music for two reasons. One, our speakers are often academic, and used to giving a grand rounds “talk-for-40-minutes” type of presentation. Those endless talking presentations make for a terrible podcast. The music gets them out of that frame into a more relaxed and non-academic mindset. Second, selfishly, I enjoy the music because I enjoy the challenge of learning and recording a new song each week.

I can combine a life hobby with my academic work, which is a win-win in my book.

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

MS: How does asking your guests to pick songs change the conversations you have with them? Was this really intentional or more spontaneous?

AS: It was very spontaneous. On the first episode, it was either Eric or Ken Covinsky who said, “Oh, and bring your guitar and play something.”

EW: I would add that it makes the start of the conversation much more personal as, in a way, it invites you to see a side of the guest that you wouldn’t see just by reading their academic articles.

This also sets the tone of the podcast that we are not just going to talk about what they found in their research, but also what makes it personally meaningful to them.

MS: Have there been any musical interludes or episodes that were particularly notable?

AS: The most memorable was when we attempted to sing Bohemian Rhapsody on a podcast with Melissa Wei about multimorbidity. Eric and Melissa both joined in (we were in the office singing together pre-covid). I gave up on the guitar part somewhere around “I see a little sillouhetto…” and we just went for it—out of tune, loud, laughing, and loving it.

EW: I think back to some of the episodes we did early in the COVID pandemic. One in particular was with Jim Wright, a medical director for a 160-bed nursing home that was devastated

by COVID. Listening to him talk, you got a sense of how overwhelming things got: “And then unfortunately, a hospital system which provided practitioners for over half the patients in our building, they quarantined their physician and nurse practitioner that normally came here and would not send any other replacement physicians. We ended up (me and my PA) with the entire building all at once. And so that first week was exhausting, and just very difficult to get through, day to day because you have your hands full seeing patients, writing orders and trying to keep them from crashing, but then you're also changing patients, making sure they're hydrated, helping with meal deliveries and things like that because of the under-staffing with the aides and the nurses as well.”

MS: Is there something you feel most proud of?

AS: When people come up to us at meetings, or relatives, or friends in healthcare and say, “I listened to your podcast on X.” Makes my heart sing.

EW: Alex and I joke that the average readership of a traditional journal article is about three: the journal editor, lead author, and the author's mom. So, I’m also proud that we give those who are trying to improve the lives of older adults and those living with a serious illness another avenue to share the work that they are doing.

MS: What are you looking forward to?

AS: Helping people out by interpreting complex research articles for practicing healthcare professionals. Putting these studies in context. Having more fun with Eric and our guests.

Singing new songs.

EW: When we started the blog in 2009, I never imagined doing a podcast, but then seven years later we created one, and I love doing it. I look forward to seeing what comes next for GeriPal. I’m not sure we will see Alex doing TikTok dances, but I’m pretty sure in five years we will have evolved to something that I just can't imagine right now.

Alex Smith, MD, MS, MPH and Eric Widera, MD are palliative care physicians and Professors of Medicine in the UCSF Division of Geriatrics. Dr. Smith is a clinician-researcher and Dr. Widera is a clinician-educator. They both co-founded the GeriPal blog and podcast and ePrognosis, an online compendium of prognostic calculators for older adults.

MS: What are some challenges you (and the podcast) faced?

AS: Growing our listenership is our current challenge. Many podcasts offer CME credit. It would take a huge amount of administrative-type work for us to offer CME. I’m not sure we want to do it. We do this because it’s fun, and that might make it less fun.

EW: As the production value goes up for the podcast, so does the cost. So funding the show becomes a challenge. We have been lucky to have had a three-year grant from the Archstone Foundation, but now have to look to other ways we can get sponsorship.

WWW.SFMMS.ORG

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

35

Special Section: Palliative Care

THE RESPECT PROJECT Scott Schmidt, MD, Kaiser San Rafael Emergency Department Palliative Care Pilot The Emergency Department is a busy place where patients at all stages of illness go when they require immediate attention. A small but very important group of ED patients are gravely ill or in cardiopulmonary arrest and end up dying there. It is our responsibility and privilege to care for these patients and their families with dignity and respect at this profound and difficult moment of their lives. The experience they have will remain with them for the rest of their lives. It is for these patients and their loved ones, as well as their healthcare providers, that the RESPECT project was conceived.

R: Restore Order (and prepare loved ones for coming to the bedside): • Clean blood or other body fluids from around patient’s face and mouth • Cover patient with a clean sheet • Remove extraneous medical equipment • Put patient in a private room if possible • Death disclosure should occur prior to bringing family to the bedside

E: Explain: What happened and who was involved in patient’s care • Introduce the team that cared for the patient: names vs roles vs ‘this is the team that took care of your dad’ kind of introductions will vary depending on the situation • Describe what happened briefly and in simple terms � Some information may be given at the time of death

disclosure, but it is also important to name and identify medical equipment that may still be attached to the patient’s body � If family is present during resuscitation, this can occur

while events are unfolding or after resuscitation is concluded. � In either situation, it matters less what you say than

how you say it. If providers are able to communicate compassionately and empathically, it will be of lasting benefit.

S: Stop and Set Aside Other Duties: • Other things can wait.

• RN other patients to be reassigned or covered by charge or break RN • Physicians are encouraged to hand off spectralink to a colleague

36

P: Be Present • Caring for patients and their families at the time of death can be overwhelming and emotionally challenging.

Sometimes it’s helpful to check in with our selves first.

Am I feeling anxious, irritated, sad? Take a couple breaths to feel it and know it, then let it be and turn your full awareness toward what’s unfolding before you.

E: Empathize • Take a moment to acknowledge that someone’s life has just ended. Whatever she was doing, whoever he was sharing his life with, it’s over now.

• Loss is a shared human experience that transcends all roles.

• Providing empathetic presence, quietly allowing ourselves to imagine what patient’s loved ones are going through, can often be more comforting than words.

C: Chaplain/Clergy • Spiritual support is of critical importance to some families.

• Our Chaplain is in house five days a week and can come to the bedside when available or make bereavement calls to families of patients that have died in the ED if requested.

• Families may be connected to a specific religious community or spiritual support system that we can offer to contact.

T: Time: • Allow family some time with their loved one • After approximately 30 minutes or when family shows signs they are ready, gently ask “would it be ok to talk about some logistics now?” When they feel ready and only then, begin to work on the other items that need attention such as mortuary plans, death certificate etc.

• Caring for dying patients and their loved ones can be very satisfying for providers, but it can be emotionally and psychologically burdensome as well. Thus, it is essential

that we take care of ourselves and each other along the way.

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

SFMMS ADVOCACY CASE STUDY

LEGALIZING “OBSTETRICS OF THE SOUL” IN CALIFORNIA Steve Heilig, MPH Medical Aid in Dying, as it’s now called, has been controversial for many centuries. Hastening a patient’s demise in any way has long been prohibited in the Hippocratic Oath (although it’s likely that was to prohibit political leaders from ordering physicians to execute enemies), and by AMA and most other medical associations’ policies.

But the advent of the HIV epidemic fostered reexamination of this in practice and policy, and therein lies a story.

Oregon and Washington were the first states to legalize MAID. California advocates attempted such a change a number of times over the years, using legislation or ballot initiatives—all of which failed. A key, perhaps the key factor in their defeat was opposition by the California Medical Association. This made sense, as what legislator or voter would want to grant a practice option to a powerful profession that didn’t seem to want it? On the other hand, not all physicians were in line with the AMA, and a paper from over 150 years ago argued that MAID could in fact be a form of “obstetrics of the soul.”

In San Francisco, medical opinion—and practice—seemed less unified and often not in line with the AMA and CMA. Caring for many dying AIDS patients who wanted out of their final suffering resulted in many local physicians favoring a legal option to help them exercise their free choice. By the early 1990s, the ghoulish/courageous Dr. Jack Kevorkian had put the “right to die” into the news as he intended, and editorials were appearing in medical and other publications in favor of allowing MAID where dying patients begged for it and no other good options were available. Some SFMS leaders voiced such opinions, so we thought we’d ask the SFMS membership. A survey yielded almost 700 responses, with a majority favoring a “pro-choice” position. I’ve always recalled one of the scribbled comments on one of the survey forms: “It’s time we become as humane with our patients as we are with our pets.”

Publication of our results in the SFMS journal became the first survey of American medical opinion on this controversial topic and was front-page news in the media. There have subsequently been many more such surveys, with at last count over 30,000 cumulative respondents, with results on the basic WWW.SFMMS.ORG

question fairly consistent with our own. Thus our elected delegation to the CMA—which included some leading HIV clinician/researchers—began to bring policy resolutions to the CMA annual meetings, advocating for a reexamination of CMA’s anti-MAID stance.

These efforts repeatedly were rejected, sometimes without even a chance for real debate.

I authored an editorial for the CMA journal—not expecting them to actually publish it— gently suggesting their position was outdated, and responses poured in mostly agreeing with me. We also convened a committee of Bay Area hospital ethics committee chairs, to draft clinical guidelines for providing MAID, legal or not. Publication of these guidelines in the Western Journal of Medicine garnered headlines nationwide, including a front-page New York Times story titled “Guidelines for the Unthinkable?” But still we continued to think about it.

In 2015, a new legislative effort to legalize MAID in California was underway, developed and lobbied by the wide coalition of dedicated advocates for MAID. The CMA was again slated to oppose it, with likely success as usual. The SFMS delegation wrote to CMA leadership, citing split physician opinion and the “state laboratories” of Oregon and Washington showing MAID could be legalized without abuse and in fact seemed to improve other elements of end-of-life care. We urged a position of “studied neutrality.” To its credit, CMA finally convened its large legislative committee to consider the matter in a halfday meeting. A prior online survey of the full House of Delegates prompted over 100 responses, with neutrality favored by 2-1. Testimony at the meeting was heated and mostly eloquent, although our opponent’s likening MAID to pushing somebody off the Golden Gate Bridge was probably ill-advised. When the committee chair asked for a “vote by hand,” the result was at least 3-1 in favor of changing CMA position to neutrality. Many in the room, including the legislators who authored the bill in question, seemed mildly shocked at the vote. I saw one physician wiping tears away, and felt quite emotional myself. After a couple decades of advocacy, we had prevailed. continued on paage 37

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

37

Special Section: Palliative Care CMA opposition thus removed, the bill quickly was passed by all legislative votes and went to then-Governor Jerry Brown’s desk. A Jesuit by training and a very thoughtful if unpredictable leader, Brown devoted a whole weekend to pondering this one bill. We knew his fellow Catholics would be weighing in, so asked physicians and others who knew him personally to contact him as well. Some did so. On a Monday he issued his signature on the bill, adding an unusual personal message that concluded “In the end, I was left to reflect on what I would want in the face of my own death. I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

By chance that very morning I was lecturing to medical students at UCSF on ethical issues, and held up the front-page Chronicle story and asked what they thought. There was a moment of silence until one student hesitantly asked “Um, why was that illegal in the first place?” Many others then nodded. And thus a reminder that major controversies of the past can so rapidly become less so to new generations. SFMMS co-sponsored a major, sold-out conference on clinical aspects of MAID in 2020, just before COVID hit, and it was a remarkably “normal” CME gathering, especially given that it might have been judged an illegal one just a few years before. Varied specialty associations have taken softer or even supportive stances on MAID, and even the AMA in 2019 stated that physicians can act in this regard “according to the dictates of their conscience without violating their professional obligations.”

The mandated annual reports on the practice of MAID have revealed none of the feared abuses of the practice, and only a few hundred actually using the option to hasten actual death each year. Countless more, one can confidently surmise, have

38

found the “comfort” in the option that Governor Brown cited, without actually availing themselves of it. Can MAID be seen as a “last resort” element of palliative care? Some say so, citing definitions including relieving suffering and stress in the face of severe, especially terminal, illness. Among the many clinical and ethical grey areas associated with MAID, the reassurance that their physicians will “be there” for them no matter what, to the end as needed and wished, is likely the biggest, and most positive, impact of all the work we did to change the prohibition on MAID in our state. I will be forever proud and grateful that SFMMS was a major factor in that needed evolution.

For an update on MAID issues, see the report by Lonny Shavelson, MD in this same issue, and visit the American Clinicians Academy on Medical Aid in Dying at American Clinicians Academy on Medical Aid in Dying (acamaid.org)

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

Steve Heilig is a longtime staff member of the SFMMS, co-editor of the Cambridge Quarterly of Healthcare Ethics, former hospice caregiver and director, and managing editor of this journal.

WWW.SFMMS.ORG

UPDATE

A DAY I WISH WE DIDN'T NEED Dr. Jessie Mahoney, SFMMS Physician Wellness Committee Chair September 17th, 2021 was National Physician Suicide Awareness Day. Physician suicide is one of the reasons I have been so dedicated to physician wellness for the last 20 years. A physician commits suicide in the US on average every single day and rates are going up. Physicians have the highest suicide rate of any profession and twice the national average. The work we do as physicians is beyond hard. Especially now.

Yes, we knew it would be hard. What we didn’t know is that our trained thought patterns—those that serve us well as diagnosticians and in emergencies also make us even more susceptible to burnout, general life and relationship unhappiness, and even suicide.

The culture in medicine is that self-care is selfish and reaching out for help and even needing help as a physician and healer is a weakness. Most physicians suffer and struggle in silence.

We need to change the culture around help-seeking and mental health in medicine.

And support wellness as a “value, not a problem.”

We need to support each other with kindness and unconditional support around our perceived weaknesses and encourage help-seeking behavior.

Mindfulness and coaching are tools to help ease and prevent burnout, exhaustion, depression, anxiety, overwhelm, and relationship distress. Sometimes even more help is needed.

There is no shame in reaching out for any and all kinds of help.

Paraphrasing Charley Macesky in The Boy, the Mole, the Fox and the Horse, “When have you been at your strongest? When you ask for help.”

Mental health struggles are everywhere—in loved ones and colleagues. Whether they show outwardly or not. Let’s stop the stigma, encourage help-seeking behavior and show up with mindful loving kindness. Mindfulness is noticing, awareness, generosity, patience, non-judgment, compassion, attention, and intention.

I recommend taking a listen to the Mindful Healers Podcast episode entitled “Getting Help Helps.”

In it, my colleague, Dr. Ni-Cheng Liang and I talk about common barriers to getting help and why reaching out for help is a demonstration of strength.

Dr. Jessie Mahoney is a Board-Certified Pediatrician, a certified life coach for physicians, and a yoga instructor. She is the Chair of the SFMMS Physician Wellness Task Force. She practiced Pediatrics and was a Physician Wellness leader at Kaiser Permanente for 17 years. She is the founder of Pause and Presence Coaching where she supports her physician colleagues using mindfulness tools and mindset coaching.

She is a founding leader of the Mindful Healthcare Collective and is a co-host of the Mindful Healers Podcast. She teaches virtual weekly yoga to physicians and other healthcare providers and in non-Covid times, leads yoga and wellness retreats in beautiful locations around the world. You can connect with her at jessie@ jessiemahoneymd.com.

NATIONAL

PHYSICIAN SUICIDE AWARENESS DAY

WWW.SFMMS.ORG

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

39

SF Marin Nature & Wellness Dr. Marjorie Smith, Wellness Committee Leader and Culinary Medicine Series Facilitator, Estero Trail, Point Reyes & at Mono Lake

"One of my favorite hikes is on the Estero Trail at Point Reyes National Seashore Park because it traverses through several types of ecosystems including the high cliffs above the shore line of the Home Bay, an extension of Drake's Estero. Before reaching the high cliffs of the trail that treat one to vistas of sweeping grassland and the expanse of the Estero, the trail emerges from a pine forest into a clearing that overlooks the upper shore and wetlands of Home Bay-the photo captures this place. A great birdwatching and listening spot, it delights all the senses at any time of day. I especially enjoy it here an hour before sunset when the Marbled Godwits gather together on the shore's edge".

Join Us to Heal, Connect and Grow: Our SFMMS Physician Wellness Team continues to grow our efforts to nourish, care for, and support our

member physicians in Marin and San Francisco.

“Hiking and birdwatching at Mono Lake”

Dr. Jessie Mahoney, Wellness Committee Chair in Muir Woods.

We are working ongoing to change perceptions around physician wellness. We hope to promote a culture where physicians see taking care of their health and wellness as a non-negotiable component of being a healthy and effective physician.

Free Wellness Resources for Physicians: SFMMS Physician Wellness Webpage Visit the SFMMS Physician Wellness page at http://www.sfmms.org/get-help/physician-wellness to find curated resources for our SFMMSphysician members.

40

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

COMMUNITY MEDICAL NEWS Kaiser Permanente

Kaiser Permanente San Rafael

Maria Ansari, MD

Naveen Kumar, MD

Physician burnout is a very real issue, one that medical organizations have taken more seriously in recent years.

As a medical group, we recognize that our promise to provide the highest quality of care must include systems and tools that are optimized to facilitate meaningful patient interactions and engagement in satisfying work. During the multiple surges of the COVID-19 pandemic, physician wellness has become a higher priority than ever, as medical centers seek to provide resources and support to staff who are working under conditions of unprecedented stress.

To help address the health of our physicians, our Physician Health and Wellness Committee has developed a strategic framework to prioritize culture, practice support and personal wellness. Our efforts are led by physician peers who understand best the culture of our group as well as our challenges. We use studies of physician burnout and widespread physician input to guide our development of new wellness programming and services, which include a wide range of groups, classes, and events. We also tailor our programs to accommodate a variety of schedules, complimentary to our workday. Keeping with global times, we have found that virtual options remain a valuable way to connect with colleagues, communicate and support one another through these times.

Providing physicians with a comprehensive program of wellness and support services is one of the most effective ways we can provide the best and most compassionate patient care.

With so many Marin County residents entrusting Kaiser Permanente with their care, we were pleased to open the new San Rafael Park Medical Offices in July.

For more than 60 years, Kaiser Permanente San Rafael has been a part of Marin County, caring for our patients and promoting the health and well-being of our community. The new offices were designed with the community in mind, guided by our commitment to high-quality care, high levels of customer service, and convenience. San Rafael Park Medical Offices offer comprehensive primary care and onsite access to pharmacy, lab, rehabilitation therapies, imaging, endocrinology, and eye services—all under one roof.

The departments and services available at San Rafael Park Medical Offices: Adult and Family Medicine; Endocrinology; Health Education; Imaging; Lab; Ob-gyn; Ophthalmology; Optometry; Outpatient Eye Surgery Suite; Pediatrics; Pharmacy; Physical/Occupational Therapy; and Vision Essentials (includes Optical Sales).

“At this new technologically advanced building, our members can expect to receive the same high-quality, integrated, and industry-leading care they’ve come to depend on,” says Naveen Kumar, MD, Physician in Chief, San Rafael Medical Center. “I have tremendous gratitude for our care teams, whose clinical excellence is reflected in this beautiful new space.”

The project represents years of hard work and thoughtful collaboration with environmental stewardship top of mind. One example was the decision to repurpose an existing building instead of constructing one from the ground up. The three-story, 145,000 square-foot building has features like all LED lighting, electric vehicle charging stations, reclaimed water in the plumbing fixtures, and solar panels, which provide 100 percent of the building’s electrical needs. There are also bike racks and commuter showers to make it easy to leave the car at home.

The San Rafael Park Medical Offices was years in the making and is a testament to the San Rafael leadership team’s long and deep commitment to our community. We welcome the opportunity to serve the broader Marin County and surrounding communities in our spacious new building.!

WWW.SFMMS.ORG

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

41

42

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

WWW.SFMMS.ORG

OCTOBER/NOVEMBER/DECEMBER 2021 SAN FRANCISCO MARIN MEDICINE

43

Advertiser Index Cooperative of American Physicians. . . . . .

Inside Back Cover MarinHealth. . . . . . . . . . . . . . . . . . . . . 4 MIEC. . . . . . . . . . . . . . Inside Front Cover Sutter Health Novato . . . . . . . . . . . . . . 17 The Doctor's Company. . . . . . . Back Cover 44

CLASSIFIED ADS Medical Office space available at 2100 Webster Street, San Francisco. Pacific Professional Building http://webster.com 415-923-3915.

Contact: v.vidaurri@2100webster.com

SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021

WWW.SFMMS.ORG

San Francisco Marin Medical Society 2720 Taylor St, Ste 450 San Francisco, CA 94133

Presorted Standard U.S. Postage

PAID

Claremont,CA Permit No. 500