Oncology Nurse Advisor November/December 2018 by Haymarket Media

November/December 2018

www.OncologyNurseAdvisor.com A F O R U M F O R P H YS I C I A N A S S I S TA N T S

FEATURE

ONCOLOGY NURSING Challenges of Cancer Care in the Incarcerated Population

FEATURE

End of Treatment: Navigating a Crucial Point of Care

CASE STUDY

Myelofibrosis: Diagnosis to Early Intervention in an Elderly Man

RADIATION & YOUR PATIENT

Radiation Genomics: The Search for Predictive Biomarkers

COMMUNICATION CHALLENGES

Deciphering Persistent Questions

THE TOTAL PATIENT

Reducing Suicide Risk Among Veterans With Lung Cancer

ASK A PHARMACIST

Counseling Patients on Adherence to Oral Chemotherapy

Keeping Internet Searches Professional: What You Look for and Why Matters Despite its public domain status, information found online must be handled through the lens of patient privacy.

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Oncology Nurse Advisor (ISSN 2154-350X), November/December 2018, Volume 9, Number 6. Published 6 times annually by Haymarket Media Inc, 275 7th Avenue, 10th Floor, New York, NY 10001. For Advertising Sales & Editorial, call (646) 638-6000 (M-F, 9am-5pm, ET). Postmaster: Send changes of address to Oncology Nurse Advisor, P.O. Box 316, Congers, NY 10920. All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means electronic or mechanical, including photocopy, recording, or any information storage and retrieval system, without permission in writing from the publisher.

EDITORIAL BOARD Eucharia Borden, MSW, LCSW, OSW-C Lankenau Medical Center Wynnewood, Pennsylvania Ann J. Brady, MSN, RN-BC Huntington Cancer Center Pasadena, California Jiajoyce R. Conway, DNP, CRNP, AOCNP Cancer Care Associates of York York, Pennsylvania Marianne Davies, DNP, ACNP, AOCNP Smilow Cancer Center @ Yale New Haven New Haven, Connecticut Frank dela Rama, RN, MS, AOCNS Palo Alto Medical Foundation Palo Alto, California Donald R. Fleming, MD Cancer Care Center, Davis Memorial Hospital Elkins, West Virginia Leah A. Scaramuzzo, MSN, RN-BC, AOCN Kalispell Regional Healthcare Kalispell, Montana Lisa A. Thompson, PharmD, BCOP Kaiser Permanente Colorado Rosemarie A. Tucci, RN, MSN, AOCN Lankenau Hospital Wynnewood, Pennsylvania Kara M. L. Yannotti, MMH, BSN, RN, CCRP John Theurer Cancer Center at Hackensack University Medical Center Hackensack, New Jersey

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CONTENTS 7

November/December 2018

IN THE NEWS • Metronidazole, Vancomycin Recommended for C Difficile in Pediatric Oncology, HSCT • Current Practices in Breast Reconstruction After Treatment • Infections in Primary ITP Associated With Low Platelet Count • Lobectomy vs SBRT: A Comparison of Prognoses and Survival for NSCLC

• Integrating Mental Health Into Multidisciplinary Oncologic Care • Many Breast Cancer Survivors’ Desire for Pregnancy Changes After Treatment • Lack of Choice Perceived Among Those Treated With RAI for Differentiated Thyroid Cancer • Open Hysterectomy Survival Rates Edge Minimally Invasive Procedures for Cervical Cancer

FEATURES 12

Nurses Online: Professional Use of Internet Searches Eucharia Borden, MSW, LCSW, OSW-C; Rosemarie Tucci, MSN, RN, AOCN

Challenges of Cancer Care in the Incarcerated Population Tiffany Garbutt, PhD

48 FIND US ON

Continued on page 6

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NAVIGATOR NOTES Is Surgical Intervention Best Option for Elderly Female Nursing Home Residents With Breast Cancer?

CONTENTS

November/December 2018

A retrospective study sought to determine the effectiveness of surgical intervention for elderly female nursing home residents with breast cancer. Megan Garlapow, PhD

JOURNAL REVIEW FEATURES (continued) 27 End of Treatment: Navigating a Crucial Point in Care Bette Weinstein Kaplan

CASE STUDY Myelofibrosis: Diagnosis to Early Intervention in an Elderly Man Lindsey Lyle, MS, PA-C

Nedaplatin Associated With Less Toxicity Than Cisplatin for MPE

Researchers sought to determine the efficacy of nedaplatin vs cisplatin for the treatment of malignancy-induced malignant pleural effusion. John Schieszer, MA

STAT CONSULT Varenicline (Chantix)

RADIATION & YOUR PATIENT Radiation Genomics: The Search for Predictive Biomarkers Bryant Furlow

Varenicline is a nicotinic receptor partial agonist used as an aid to smoking cessation treatment.

COMMUNICATION CHALLENGES Deciphering Persistent Questions Ann J. Brady, MSN, RN-BC, CHPN

THE TOTAL PATIENT Palliative Care in Lung Cancer: Reducing Risk of Suicide Ideation in Military Veterans Bette Weinstein Kaplan

ISSUES IN CANCER SURVIVORSHIP CNS Tumors in Childhood: Predicting Successful Independence in Adult Life

FROM CANCERCARE Strength and Hope for Women in the Midst of Cancer

Researchers sought to determine indicators that predict CNS tumor survivors’ ability to live independently as adults.

Essie Roman, LMSW

Bette Weinstein Kaplan

ASK A PHARMACIST Counseling Patients on Adhering to Their Oral Chemotherapy Lisa A. Thompson, PharmD, BCOP

ON THE

WEB

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IN THE NEWS Metronidazole, Vancomycin Recommended for C Difficile in Pediatric Oncology, HSCT

An international multidisciplinary panel presented recommendations for the use of metronidazole or vancomycin to treat Clostridium difficile infection (CDI) in children and adolescents with cancer and pediatric patients undergoing hematopoietic stem cell transplantation (HSCT). C difficile is a common bacteria in normal GI flora; however, rates of CDI in adults and children are increasing. Risk factors include recent antibiotic and chemotherapy exposure and prolonged hospitalization, all of which are common in pediatric patients with cancer and those undergoing HSCT. As a result, CDI is now the most common cause of health care-associated infectious diarrhea and an important health care-associated infection in pediatric patients. Although several guidelines are established for managing this infection, none focus on pediatric patients in these clinical settings. Therefore, the multidisciplinary panel developed a clinical practice guideline for the prevention and treatment of CDI in children and adolescents with cancer and pediatric HSCT patients. The panel performed systematic reviews of randomized controlled trials that focused on prevention or treatment of CDI in any population, then considered the applicability of the findings to pediatric cancer and HSCT patient populations. Despite the low quality of evidence specific to pediatric cancer and HSCT patients in these studies, the panel made the following 7 recommendations: • Probiotics are not recommended for routine prevention of CDI (weak recommendation). • Oral metronidazole or oral vancomycin should be used to treat nonsevere CDI (strong recommendation). • Oral vancomycin should be used to treat severe CDI (strong recommendation). • Fidaxomicin should be considered for the treatment of recurrent CDI (weak recommendation). • Fecal microbiota transfer (FMT) should not be routinely used in the treatment of CDI (strong recommendation). • Monoclonal antibodies should not be used routinely to treat CDI (weak recommendation). • Probiotics are also not recommended for treatment of CDI (weak recommendation). The omission of pediatric patients from randomized trials on prevention and treatment of CDI resulted in a lack of high-quality evidence to inform these recommendations. Therefore, the researchers suggest future trials focus exclusively on pediatric patients or include sufficient numbers of them in adult trials.

Current Practices in Breast Reconstruction After Treatment After a mastectomy, almost 40% of women choose breast reconstruction, with both autologous and prosthetic options possible, according to a report detailing current practices in breast reconstructions. Mastectomies are not the only indication for breast reconstruction, as lumpectomies and radiation can also deform the breast.

Patients often prefer reconstruction immediately upon mastectomy to avoid extra surgeries. If radiation is also required, autologous reconstruction after radiation is recommended due to high rate of failed reconstructions with radiation. Autologous reconstruction is also less likely to be associated with complications after radiation than is prosthetic reconstruction. Autologous breast reconstruction requires longer surgery and recovery times but avoids use of implants; however, women

www.OncologyNurseAdvisor.com • NOVEMBER/DECEMBER 2018 • ONCOLOGY NURSE ADVISOR 7

IN THE NEWS

Read more at http://bit.ly/2FJjebd.

Lack of Choice Perceived Among Those Treated With RAI for Differentiated Thyroid Cancer Typically the use of radioactive iodine (RAI) does not improve the survival or reduce the risk of cancer recurrence in patients with differentiated thyroid cancer (DTC). Yet, many patients continue to receive RAI. In a study presented at the 2018 ASCO Quality Care Symposium, researchers at the

University of Michigan conclude that many patients did not feel they had a choice in whether to receive RAI treatment. The researchers surveyed patient with thyroid cancer from 2014 to 2015 from the Georgia and Los Angeles SEER registries. Patients with intermediate-risk thyroid cancer where selective RAI was recommended were also included in the survey. Patients were asked if they felt they had a choice to receive RAI, how strongly their physician recommended initial RAI treatment, and how satisfied they were with their decision to receive RAI. Patients who perceived they did not have a choice were also more likely to be dissatisfied with their choice to receive RAI. The authors note that altogether this suggests “a need for more shared treatment decision making to reduce overtreatment.” Read more http://bit.ly/2r5ArS5.

Open Hysterectomy Survival Rates Edge Minimally Invasive Procedures for Cervical Cancer For early-stage cervical cancer, radical hysterectomy is the primary course of treatment. However, open abdominal radical hysterectomy is accompanied by complications such as lymphedema in the legs and bladder, and sexual dysfunction. In an effort to reduce surgical morbidity, minimally invasive techniques such as robot-assisted radical hysterectomy have been widely adopted. However, the adoption of minimally invasive radical hysterectomy coincided with a progressive decline in the 4-year relative survival rate of 0.8% per year that coincided with the initial period of adoption of robot-assisted surgery in the United States from 2007 to 2010. The interrupted time-series study focused on women who underwent radical hysterectomy for cervical cancer between 2000 and 2012 and utilized data from the Surveillance, Epidemiology, and End Results (SEER) program database. Over a median follow-up period of 45 months, the 4-year mortality rate was 9.1% for women who underwent minimally invasive surgery. In comparison, women who underwent open surgery had a 4-year survival rate of 5.3%. The discovery coincides with another published study and corroborates the finding that minimally invasive hysterectomy is associated with poorer survival rates compared with open hysterectomy in patients with early-stage cervical cancer. Read more at http://bit.ly/2ReCGht.

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FEATURE | Oncology Nursing

Nurses Online: Professional Use of Internet Searches How much of what’s online is off limits? A review of ethics, principles, and guidelines for nurse and social worker behaviors regarding online searches.

Internet information may be in the public domain, but patient privacy must still prevail.

EUCHARIA BORDEN, MSW, LCSW, OSW-C; ROSEMARIE TUCCI, MSN, RN, AOCN

s you’re getting ready for work, you hear a patient’s name on the news because he has been arrested for allegedly committing a crime. During a patient interview, personal ties to a prominent political figure are disclosed and you want to learn more. A patient hasn’t shown for several treatments and you suspect that a death has occurred. You see a famous person walking the halls of your hospital with family. Perhaps you have encountered one of these situations or something similar. What was your next step? Did it involve an Internet search? We are living in a pivotal time in history where more information is available than one can conceivably process at once. We have the ability to search for any piece of information, on any topic, at any point during the day. Within a matter of seconds, we get search results with thousands of links spread across several pages of our favorite search engine. In fact, some of us may be surprised what we’d find if we searched online for public information about ourselves. The question really becomes, if information is available publicly online, is it a violation to search for information about our patients? Is consent required? Is this similar to a HIPAA violation, like when searching for information about a patient in a medical record? This article seeks to address these questions and others as we coexist in an on-demand “information nation.”

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REDEFINING TERMS Many of us work in settings where policies exist regarding the use of social media, but how many have policies that address accessing publicly available information online? To adequately discuss the implications and ramifications of using an Internet search engine, we generally define it for the purposes of this article as: the use of Internet-based tools that allow communication, sharing of information and ideas, and media-sharing sites. These tools can be used to improve professional networking and education, patient education and/or public education, and general information gathering. Before utilizing these tools, however, it is important to understand that there are professional limits to their use, such as confidentiality and privacy of those whose care you are responsible for. Privacy relates to the patient’s expectation and right to be treated with respect and dignity. Confidentiality refers to the fact that any information learned regarding the patient must be safeguarded, not shared with others outside of those caring for the patient at that time, and should be shared only for the purpose of providing care for the patient. Informed consent is defined as permission granted with the knowledge of the possible consequences, typically that which is given by a patient to a care provider with full knowledge of the possible risks and benefits. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) established national standards to protect patients’ medical records and other personal health information. It applies to health plans, healthcare clearinghouses, and those healthcare providers who conduct certain healthcare transactions electronically. HIPAA requires appropriate safeguards to protect the privacy of personal health information, and sets limits and conditions on the uses and disclosures of such information that may occur without patient authorization. It also gives patients’ rights over their health information, including rights to examine and obtain a copy of their health records, and to request corrections. Sharing information with patients via the Web, holds its own legalities. Professional caregivers need to be sure that information shared is accurate and reliable. They must also determine that the way information is shared is appropriate. For example, sending a patient information regarding his/ her own diagnosis and/or treatment through an unprotected email server or website is not HIPAA compliant.

health care. For example, when caring for a patient with a criminal record who has completed required incarceration time or civic duty, whether the medical team knows what the crime was is not important unless it directly affects medical decision-making for the patient. Consider, for example, the patient who violates probation or parole and must serve time as a result: This poses challenges for completing prescribed treatment and thus requires seeking additional information, such as: whether your patient will be allowed to complete treatment at your facility; how to arrange for a transfer of care, perhaps due to distance between the correctional facility and the patient’s treatment team; or maybe even how to keep a patient with a compromised immune system or who has a port in place safe in a correctional facility. Quite honestly, the actual violation or reason for the arrest is not a vital piece of information for making necessary treatment-related decisions, although it may pique the interest of members of the healthcare team.

WHERE TO DRAW THE LINE We must first ask ourselves if others need to know information about our patients gathered from sources outside of

• Nurses must not transmit or place online individually identifiable patient information. They should also know their legal and ethical responsibilities as well as their own

Although nurses have no “writtenin-stone” rules for the use of the Internet, the ANA published principles for social networking. However, what if a young patient with newly diagnosed, advanced-stage cancer and who has struggled with an addiction is the person you recall hearing on the morning news has been arrested for an alleged crime? If this patient must begin treatment within a certain time frame, per recommended treatment guidelines, a decision has to be made on whether sharing what was learned in a public forum is vital to making treatment decisions within the multidisciplinary care team that best support the patient. There are certainly gray areas, depending on the situation. The question becomes one of ethics. PRINCIPLES FOR ETHICAL SOCIAL NETWORKING Although nurses have no “written-in-stone” rules for the use of the Internet, the American Nursing Association (ANA) published principles for social networking in 2011:

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Time-saving clinical tools for patient-centered care. OncologyNurseAdvisor.com provides all of the tools you need to better care for your patients. • Cancer treatment regimens

• Easy-to-use medical calculators

• Downloadable patient fact sheets

• Comprehensive drug slideshows

Visit www.OncologyNurseAdvisor.com today.

FEATURE | Oncology Nursing organization’s policies regarding the use of social media and protection of patient information. • Nurses who interact with patients on social media must observe ethically prescribed patient-nurse boundaries. • Nurses should evaluate all of their postings with the understanding that a patient, a colleague, an educational institution, or employers could potentially view these postings. • Nurses should take advantage of privacy settings available on many social networking sites in their personal online activities and seek to separate their personal and professional online sites and information. • As a patient advocate, nurses have an ethical obligation to take appropriate action regarding questionable healthcare delivery at an individual or system level. • Nurses are encouraged to participate in the development of policies and procedures in their organizations for handling reports of inappropriate online conduct.1 Other nursing agencies and organizations also have developed guidelines for the professional use of the Internet, which fall into categories similar to the ANA. Other healthcare team members may have association-driven regulations or guidelines that dictate online behavior. Effective January 1, 2018, 19 new standards and revisions to the National Association of Social Workers (NASW) Code of Ethics went into effect, as approved by the Delegate Assembly of the NASW in August 2017. Among these are 2 ethical standards relevant to this article: 1.03 INFORMED CONSENT (i) Social workers should obtain client consent before conducting an electronic search on the client. Exceptions may arise when the search is for purposes of protecting the client or other people from serious, foreseeable, and imminent harm, or for other compelling professional reasons.

1.07 PRIVACY AND CONFIDENTIALITY

professional reasons, and when appropriate, with the client’s informed consent.2

CONCLUSION

We usually think of informed consent as something to be obtained prior to a procedure or treatment or perhaps something that is a required part of research protocols. The notion that informed consent should be considered prior to conducting electronic searches for public information may be controversial for some. It calls into question one’s right to privacy. This “right” varies depending on the industry within

The questions of what are you looking for and why are you looking for it should remain in the forefront of what we do online at all times. which the question is posed; in this case, in the healthcare industry, does the right to privacy still exist? Should it? We acknowledge that entry into the healthcare system already connotes that one will likely share very personal details about family history, genetics, health and lifestyle habits, employment, etc; however, patients still have a right to privacy about their legal, marital, or other issues, for example, especially when those situations have no influence or impact on healthcare delivery or treatment planning. Discussions surrounding use of online search engines for purposes of uncovering information about our patients need to be an ongoing process. These issues will continue to evolve over time, perhaps reaching a point of being standardized across practices. Being mindful of patient privacy and confidentiality, as well as ethical medical behavior, is the key to maintaining professional standards. The questions of what are you looking for and why are you looking for it should remain in the forefront of what we do online at all times. ■ Eucharia Borden is a social worker at Lankenau Medical Center in Wynnewood, Pennsylvania. Rosemarie Tucci is the nurse coordinator of the Main Line Health System Pulmonary Nodule Program in Radnor, Pennsylvania.

(p) Social workers should develop and inform clients about their policies, consistent with prevailing social work ethical standards, on the use of electronic technology, including Internet-based search engines, to gather information about clients.

REFERENCES 1. ANA’s Principles for Social Networking and the Nurse: Guidance for Registered Nurses. Silver Spring, MD: American Nurses Association; 2011. 2. Code of Ethics. Washington, DC: National Association of Social Workers;

(q) Social workers should avoid searching or gathering cli-

2017. https://www.socialworkers.org/About/Ethics/Code-of-Ethics/

ent information electronically unless there are compelling

Code-of-Ethics-English. Accessed November 2, 2018.

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FEATURE | Specific Populations

Challenges of Cancer Care in the Incarcerated Population This review of oncologic care in a specific patient population examines the inherent challenges of providing care for incarcerated patients with cancer. TIFFANY GARBUTT, PHD

he incidence of cancer in incarcerated populations is higher compared with the general population.1,2 Mortality rates from such cancers are reported to be 1.6 times higher among incarcerated men and 1.4 times higher among incarcerated women than in the general population.2,3 Nursing is unique in regard to the care of prison inmates. Nurses work in the prisons themselves attending to inmates’ medical emergencies; and in addition, many nurses who work outside the prisons in specialties such as oncology may have patients who are incarcerated while under their care. In both circumstances, these nurses are faced with the unique challenges inherent with balancing the dichotomy of patient and prisoner.

Oncology nurses face unique technical and ethical challenges in providing care to incarcerated patients.

HEALTH CARE IN PRISON The prison population in the United States is one of the largest prison populations in the world, currently 750 adults per 100,000 incarcerated.4 It is also the only population in the United States that has a legally guaranteed right to health care. In 1976, the Supreme Court ruled in Estelle v. Gamble that the federal government is responsible for providing prison inmates with adequate medical care.4 The ruling invokes the Eighth Amendment of the US Constitution, under which failure to attend to the medical needs of inmates would be cruel and unusual punishment.4,5 “While the law guarantees provision of care for prisoners, it frequently falls short of an acceptable standard of care,” writes legal scholar and correctional healthcare advocate

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Gregory Dober.6 Principles of standard care are undefined and vague, and often rely on the findings of court cases in which the line for inadequate care has already been crossed.6,7 In most prison systems, inmates notify a guard when they are sick and their name is placed on a list to get an appointment with an in-house doctor. Alternatively, inmates may see a 24-hour on-call nurse for emergencies.8 Prisons employ a number of certified registered nurses and physician assistants (PAs). Of registered nurses, many possess only a 2-year associate degree, as the salary provided by prisons is not sufficient to attract nurses with bachelor’s, master’s, or doctoral degrees. On the whole, the majority of on-call nurses are licensed practical nurses (LPNs) with approximately 1 year of training.9,10 In some cases, on-call nurses are custodial officers who have completed short training courses in prison health.11 Indeed, the training provided to prison nurses has been reported as “dangerously inadequate” as many custodial officers seem to fall into the role over time without much additional training.12,13 Understandably, nurses in such positions have reported a feeling of confusion regarding the boundaries of their role between correctional officer and caregiver. Due to improper training and poor role delineation, the signs and symptoms of possible cancer in prison patients are often not adequately evaluated. Many symptoms, particularly pain, are so common they are ignored or not taken seriously.11 CHALLENGES TO TREATING CANCER IN PRISON Few to no prison nurses are oncology specialists by training. Thus, by the time inmates arrive at their initial oncology visit outside the prison, many are presenting with advanced stages of cancer and a history of prolonged signs and/or symptoms indicating serious illness. This delay in treatment can cause feelings of confusion and anxiety. Nurses have reported a sense of conflict regarding their obligation to report potential patient neglect and malpractice. Reporting such incidences may impede the relationship with prison medical personnel and negatively affect patient treatment and pain management upon return to the prison. Likewise, they are hesitant to suggest the patient consider legal counsel as they fear it might exacerbate the patient’s emotional distress.7,14 Another impediment to off-site oncology visits is transportation. An outpatient visit to a doctor can be a long and arduous ordeal for an inmate with cancer. Inmates are transported in large groups, often very early in the morning. As a result, they may miss the morning distribution of their pain medications. They are transported in shackles, unable to move around freely. For a patient suffering from tumors in the anal or spinal region,

a long bumpy ride on a hard bench without medication may be particularly painful. At the facility, inmates are confined to a holding cell when not being treated and must wait until every patient is seen before the bus returns to the prison.7 More challenges are waiting for patients and their care providers when they return to the prison. Drugs prescribed during the outpatient visit may in fact not be given at the prison for several reasons.7 Many inmates struggle with drug addiction, making distribution of pain medications particularly difficult to navigate. In some cases, on-site nurses cannot give an inmate pain medication without first

Understandably, nurses in such positions have reported confusion regarding the boundaries between correctional officer and caregiver. obtaining permission from the residing physician. Almost three-quarters of prison nurses report feeling that their training in pain management was poor, and few prison nurses had treated more than 40 patients with cancer during the previous year.15 Overall, poor training and stringent restrictions can lead to undertreating pain in inmates with cancer. The problem is not limited to medication distribution. Other forms of prescribed accommodations, such as treatment-specific diets, may also be difficult to follow once the inmate has returned to prison.7 In one report, an inmate at a state prison who had prostate cancer had to plead with prison officials to reinstate his doctor-mandated diet.16 “I’m 76 years old. Please renew my wasting diet as soon as possible,” he wrote to prison officials. The diet was eventually reinstated, but his request for prostate treatment was not granted for another month.16 COMMUNICATION IS KEY

In addition to treatment delays, communications between outside care providers, such as oncology specialists, and prison health care teams are limited. Thus, communication between the oncology clinic and the prison care team is essential. In one recorded case, an open and frequent line of communication between the prison and off-site oncology teams resulted in recommendations for pain and symptom management were followed more closely, the patient received adequate pain control, and the likelihood of the patient arriving at appointments to receive timely care was increased.7 Continues on page 26

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FEATURE | Specific Populations Some healthcare providers and prisons are embracing telemedicine to improve communication and circumvent transportation issues. If a medical concern requiring specialist attention is identified, the prison healthcare provider and the prisoner meet the specialist together via video conference, further enhancing communication between internal and external healthcare providers. The prison provider can then perform any immediate medical needs requested by the specialist such as check vital signs or obtain a blood sample. If an office visit is still required, then an off-site visit is scheduled. Some opponents and correctional healthcare advocates worry that telemedicine may add to inmates’ feelings of isolation. But prisons that have implemented telehealth contest that it gives inmate-patients a more comfortable alternative.

Tiffany Garbutt is a medical writer based in Cary, North Carolina. REFERENCES 1. Binswanger IA, Krueger PM, Steiner JF. Prevalence of chronic medical conditions among jail and prison inmates in the USA compared with the general population. J Epidemiol Community Health. 2009;63(11):912-919. 2. Mathew P, Elting L, Cooksey C, Owen S, Lin J. Cancer in an incarcerated population. Cancer. 2005;104(10):2197-2204. 3. Kouyoumdjian FG, Pivnick L, McIsaac KE, Wilton AS, Lofters A, Hwang SW. Cancer prevalence, incidence and mortality in people who experience incarceration in Ontario, Canada: a population-based retrospective cohort study. PLoS One. 2017;12(2):e0171131. 4. The current state of public and private prison healthcare. Penn Wharton University of Pennsylvania website. https://publicpolicy.wharton.upenn.

Increased communications between the prison healthcare team, patient, and off-site specialists is clearly key to overcoming many of the challenges.

edu/live/news/1736-the-current-state-of-public-and-private-prison. Published February 24, 2017. Accessed November 28, 2018. 5. Meyers C, Lyckholm L. A new liver for a prisoner. Hastings Cent Rep. 2002;32(4):12-13. 6. Dober GJ. Equivalency of care difficult to attain in U.S. prisons. Am J Bioeth. 2014;14(7):17-19. 7. Lyckholm LJ, Glancey CL. Ethical issues in caring for prison inmates

“Lots of them don’t want to go to the outside facility. They have to get on a bus, it’s bumpy, and there are delays, and if [they’re] not feeling well, they don’t like it,” explained Dr Edward Levine, the medical director for prison care for Ohio State University Wexner Medical Center, which has been practicing telemedicine with the Ohio Department of Rehabilitation and Correction since 1995.17

with advanced cancer. J Hosp Palliat Nurs. 2016;18(1):7-12. 8. Beam C. Jailhouse doc: what’s the health care system like in prison? [Explainer]. Slate website. https://slate.com/news-and-politics/ 2009/03/what-s-the-health-care-system-like-in-prison.html. Published March 25, 2009. Accessed November 28, 2018. 9. Maeve MK. Nursing practice with incarcerated women: caring within mandated (sic) alienation. Issues Ment Health Nurs. 1997;18(5):495–510. 10. Maeve MK, Vaughn MS. Nursing with prisoners: the practice

CONCLUSION The care of incarcerated cancer patients can be uniquely challenging for nurses, both technically and ethically, but at its core is an objective to provide compassionate and humane health care. Increased communications between the prison healthcare team, the patient, and off-site medical specialists is clearly the key to overcoming many of the challenges oncology nurses and their incarcerated patients face. In general, cancer care for incarcerated populations should be modeled after the cancer care provided to the general population: develop and follow a unique treatment plan based on the patient’s needs and wishes. Ideally, these patients should also have access to a diverse support team including spiritual support, counseling, physical and occupational therapy, wound care, and specialized nursing. However, doing so is not always possible. What is possible is to establish more open lines of communication, forge professional relationships between all involved healthcare teams, and communicate respectfully with a patient who just happens to be a prison inmate. ■

of caring, forensic nursing or penal harm nursing? ANS Adv Nurs Sci. 2001;24(2):47-64. 11. Watson R, Stimpson A, Hostick T. Prison health care: a review of the literature. Int J Nurs Stud. 2004;41(2):119-128. 12. Carlowe J. Prison reform. Nurs Stand. 2004;18(42):16-17. 13. Whitehead D. The health promoting prison (HPP) and its imperative for nursing. Int J Nurs Stud. 2004;43(1):123-131. 14. Shicker L. Overview of correctional medicine. Dis Mon. 2014;60(5): 170-195. 2014 May. 15. Lin JT, Mathew P. Cancer pain management in prisons: a survey of primary care practitioners and inmates. J Pain Symptom Manage. 2005;29(5):466-473. 16. Bekiempis V. Don’t get cancer if you’re in prison. Newsweek; July 22, 2015. https://www.newsweek.com/2015/07/31/dont-get-cancer-ifyoure-prison-356010.html. Accessed November 28, 2018. 17. Andrews M. When inmates need a specialist, they often see the doctor by video [Treatments]. NPR; May 1, 2018. https://www.npr.org/sections/ health-shots/2018/05/01/607354073/when-inmates-need-a-specialistthey-often-see-the-doctor-by-video. Accessed November 28, 2018.

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FEATURE | Patient Navigation

End of Treatment: Navigating a Crucial Point in Care A nurse-led study explores the significance of nurse navigators for patients with lymphoma as they transition from acute care to survivorship care. BETTE WEINSTEIN KAPLAN

or a person surviving cancer, the transition from active treatment to survivorship can be an emotional time, confusing, and fraught with challenges. Some patients feel insecure; some patients are able to move forward through the continuum of care, whereas others may not be aware that follow-up visits will continue. People who have survived lymphoma are no different from those who survived other types of cancer. They need the hands-on approach of an oncology nurse to help them navigate through their transition. Two oncology nurse specialists in Ireland, Fidelma Hackett, a clinical nurse specialist in hematology-oncology at University Hospital Limerick, and Dr Maura Dowling, senior lecturer at the School of Nursing and Midwifery, National University of Ireland, Galway, conducted a study of lymphoma survivors and their experiences as they ended active treatment and began follow-up care at a large urban hematology center.1

A “guidance/signposting” role is needed to direct patients from active treatment to an active life.

A LYMPHOMA SNAPSHOT Lymphoma comprises Hodgkin lymphoma and non-Hodgkin lymphoma (NHL). The diseases are the 17th and 5th, respectively, most commonly occurring cancers in Ireland.1 In 2015, 2110 new cases of Hodgkin lymphoma and 13,682 new cases of non-Hodgkin lymphoma were reported in the United Kingdom.1 In the United States, the American Cancer Society estimates approximately 74,680 new cases of

www.OncologyNurseAdvisor.com • NOVEMBER/DECEMBER 2018 • ONCOLOGY NURSE ADVISOR 27

FEATURE | Patient Navigation non-Hodgkin lymphoma and approximately 8500 new cases of Hodgkin lymphoma will be diagnosed in adults and children in 2018.3 Survival rates for lymphomas are also steadily improving. In the United Kingdom, 63% of patients with non-Hodgkin lymphoma and 80% of those with Hodgkin lymphoma survive for 10 years.1 In the United States, 10-year survival rates are 80% for Hodgkin lymphoma and 59% for nonHodgkin lymphoma.2-3 ISSUES FACING SURVIVORS With more people surviving, as well as receiving, a diagnosis of lymphoma, oncology staff must be cognizant of increasingly complex survivorship issues that may arise, explained Ms Hackett and Dr Dowling. In this study, they explored the challenges patients with Hodgkin lymphoma or non-Hodgkin lymphoma may have to cope with as survivors. All study participants had undergone intensive

Nurse positions in Ireland include CNSs and ANPs in hematology/ oncology, but they do not have an equivalent to a nurse navigator. treatment for lymphoma and were 18 years or older, able to give consent, and fluent in spoken English, so no interpreter would be necessary. In addition, they completed treatment 3 to 60 months prior to the beginning of the project. The investigators conducted semistructured, recorded interviews lasting 18 to 60 minutes. The investigators found that the participants’ most significant issues fit into 5 main themes: dealing with uncertainty, changed relationships, occupational engagement, extended recovery time, and concerns for the future. Dealing with Uncertainty Although patients thought positively about the transition from intensive treatment to scheduled follow-up, some felt as if suddenly they had no one supporting or caring for them. They felt insecure about no longer being monitored, just left on their own to manage treatment side effects and emerging late effects. These patients wondered how long it would take them to return to normal. Changed Relationships Most of the patients felt lucky to have achieved remission. They felt that their relationships with their partners were now stronger for having gone through the disease process together. However, some relationships were lost when family and friends were uncomfortable and confused about dealing with a cancer diagnosis.

On the plus side, patients developed new companionships with fellow patients. Occupational Engagement For many patients, getting back to normal usually meant going back to work. Although they felt the workplace was a source of emotional support and wanted to return to work, some survivors expressed concern about their ability to do so. Extended Recovery Time Most of the survivors described lingering effects of their treatment: fatigue, weight gain, and recurrent infections. Some of these effects persisted for months or years, and really hampered survivors’ efforts to get back to normal. Many participants were concerned that what they were feeling were symptoms of recurrence. CONCERNS FOR THE FUTURE

The lymphoma survivors continued their follow-up visits with their oncology nurse specialists, which helped them cope with life after the transition. But many reported their fear of recurrence became more intense as they neared each scheduled check-up visit. A NEED FOR NAVIGATION Nurse positions in Ireland include clinical nurse specialists (CNSs) and advanced nurse practitioners (ANPs) in hematology/oncology, but they do not have an equivalent to a nurse navigator. Ms Hackett agreed that theirs is an ideal situation for a nurse navigator. “A guidance/sign-posting role is certainly needed to help the patient navigate end of treatment,” she said. “That person would be ideally placed to have a dedicated end-of-treatment clinic visit with each patient to confirm the completion of active treatment; discuss the treatment summary and follow-up plan; provide support; act as a point of contact; and facilitate referrals to support services such as psychology, social work, clinical nutrition, physiotherapy, and the cancer recovery program.” ■ Bette Weinstein Kaplan is a medical writer based in Tenafly, New Jersey. REFERENCES 1. Hackett F, Dowling M. Lymphoma survivors’ experiences at the end of treatment [published online September 4, 2018]. J Clin Nurs. doi: 10.1111/ jocn.14658 2. Key statistics for non-Hodgkin lymphoma. American Cancer Society website. https://www.cancer.org/cancer/non-hodgkin-lymphoma/ about/key-statistics.html Last revised August 1, 2018. Accessed November 28, 2018. 3. Key statistics for Hodgkin lymphoma. American Cancer Society website. https://www.cancer.org/cancer/hodgkin-lymphoma/about/keystatistics.html Last revised May 1, 2018. Accessed November 28, 2018.

28 ONCOLOGY NURSE ADVISOR • NOVEMBER/DECEMBER 2018 • www.OncologyNurseAdvisor.com

CASE STUDY | Myeloproliferative Neoplasms

Myelofibrosis: Diagnosis to Early Intervention in an Elderly Man In this Case Study, Ms Lyle discusses diagnosis and early management of myelofibrosis in a 72-year-old male patient with comorbidities. pain, heart palpitations, or cough. The patient does not have a known history of congestive heart failure. What diagnostic testing would be appropriate at this point? WORKUP/RESULTS Physical examination findings Vital

Lindsey Lyle, MS, PA-C Blood Cancers and Bone Marrow Transplant Program, University of Colorado Anschutz Medical Campus, Aurora, Colorado

PRESENTATION

Mr M is a 72-year-old man with a past medical history of COPD and CAD with stent placement 10 years ago who presented to his primary care physician (PCP) complaining of increasing fatigue and dyspnea when lying flat. His symptoms have been slowly getting worse over the last few months. He denies waking from sleep gasping for air but has started sleeping with 2 pillows for comfort. Mr M confirms experiencing mild dyspnea with exertion. He has noticed occasional night sweating, bone pain, and despite reporting a decreased appetite, he reports a stable weight. He denies dyspnea at rest, chest

signs are unremarkable. In general, this is a well-appearing older male patient in no acute distress, breathing comfortably at rest. Pulmonary examination is positive for expiratory wheezing in the bilateral lung fields. Cardiac examination reveals a regular rhythm and rate, with no audible murmurs. Abdominal examination is positive for a mildly distended abdomen with palpable splenomegaly extending approximately 10 cm below the left costal margin, mid-clavicular line. Bilaterally equal nonpitting edema in the lower extremities is noted. Laboratory test results CBC with differential: WBC 24.2×109/L with no circulating blasts, neutrophils 60%, lymphocytes 30%, Hgb 10.7 g/dL, MCV 90, PLTs 118×109/L. Chemistry panel reveals mild elevation in alkaline phosphatase (130 U/L) and elevated LDH (700 U/L), otherwise normal hepatic function and serum creatinine is within normal limits (0.8 mg/dL). Iron panel within normal limits

Imaging Echocardiography reveals

increased pulmonary artery pressure concerning for pulmonary hypertension, no evidence of heart failure with normal ventricular function, and left ventricular ejection fraction of 60%. Abdominal ultrasound reveals splenomegaly measuring approximately 18 cm. The patient is referred to hematology/oncology for further work-up. What is the greatest concern given the above laboratory findings and what additional studies need to be pursued?

Elevated WBC with a reciprocal decrease in hemoglobin and platelets in addition to splenomegaly are concerning for a malignant process. The elevated pulmonary artery pressure suggests that the splenomegaly has likely been present for quite some time and may be due to increased intra-abdominal pressures. A bone marrow aspiration/ biopsy is needed for diagnosis. Patient will be referred back to his pulmonologist for co-management. Work-up in Hematology/Oncology Office Repeat CBC with differential,

peripheral blood smear, LDH, and bone marrow aspiration/biopsy are ordered. CBC with differential WBC 28×109/L with no circulating blasts, neutrophils

www.OncologyNurseAdvisor.com • NOVEMBER/DECEMBER 2018 • ONCOLOGY NURSE ADVISOR 33

CASE STUDY | Myeloproliferative neoplasms 58%, lymphocytes 25%, Hgb 10.5 g/ dL, MCV 90, PLTs 120×109/L Peripheral blood smear Immature

forms of white blood cells, nucleated RBC with tear drop cells, and anisocytosis LDH 760 U/L. Bone marrow aspiration/biopsy

Results show hypercellular marrow (80% cellular) with 4% blasts, grade 2-3 reticulin fibrosis, diploid cytogenetics. Molecular mutation analysis reveals mutations in ASXL1 and DNMT3A. The results above confirm a diagnosis of myelofibrosis as the patient has a hypercellular marrow with reticulin fibrosis and does not meet criteria morphologically for another myeloid neoplasm. He does not have one of the three classic mutations ( JAK1, MPL, or CALR), and therefore is categorized as triple negative. The ASLX1 mutation is seen in myelofibrosis. Additionally, the patient has anemia not attributed to comorbid condition, an elevated LDH, leukocytosis, and palpable splenomegaly.1 How do you determine when to treat and how to start treatment for myelofibrosis?

Determining risk in patients with myelofibrosis can be achieved by using a prognostic scoring system called the Dynamic International Prognostic Scoring System + (DIPSS +), which assesses a variety of laboratory and clinical features. Patients are categorized as low, intermediate-1, intermediate-2, or high risk.2 Mr M is older than 65 and is symptomatic due to his disease, placing him in the intermediate risk category. The splenomegaly associated with myelofibrosis has caused secondary effects on the hepatopulmonary

system, and treatment should be started. Additionally, Mr M has leukocytosis with a WBC greater than 25,000. These 3 features lead to categorization as intermediate-2 disease. Although not incorporated into the DIPSS +, the presence of an ASXL1 mutation indicates the patient is at higher risk for disease progression. Identifying goals of treatment are important when determining appropriate treatment. In this case, Mr M would benefit from spleen reduction,

of less than 8.0, he receives a blood transfusion 2 weeks after starting therapy for symptomatic anemia. Fatigue and shortness of breath improve after PRBC transfusion. Laboratory assessment after 4 weeks of therapy show worsening thrombocytopenia (75,000 × 2 weeks). Due to the platelets falling and staying at approximately 75,000 on 2 occasions, the ruxolitinib dose is reduced to 10 mg twice daily. The platelets can fluctuate fairly frequently in these patients, and since Mr M was right on the border for

Development of anemia does not limit efficacy of ruxolitinib, and patients still feel better despite developing a transient, therapy-related anemia. WBC control, and symptom improvement. Ruxolitinib, a JAK1/2 inhibitor, is currently the only FDA-approved therapy for intermediate and high-risk myelofibrosis. This therapy was granted FDA approval based on phase 3 clinical trials that showed significant reduction in spleen size and improvement in symptoms, among other benefits.3 This would be the choice of therapy for Mr M. Of note, clinical trial enrollment for patients with myelofibrosis should be considered, especially for those who are ineligible for ruxolitinib therapy. Starting Ruxolitinib Therap y For

patients with myelofibrosis, ruxolitinib dose is based on the patient’s platelet count. Reductions in WBC, RBC, and PLTs are expected due to the agent’s suppressive effect on cellular production signaling pathways. For patients whose platelets are between 100,000 and 150,000, the starting dose would be 15 mg twice daily.4 Mr M is started on ruxolitinib 15 mg twice daily, and has improvement in splenomegaly and reduction in WBC to 12×109/L. With a hemoglobin level

dose reduction, laboratory tests were repeated to confirm and avoid unnecessary dose reductions. How closely would you monitor this patient? Laboratory/Symptom Monitoring

Weekly CBC monitoring is reasonable when starting a new therapy, especially in light of the patient’s hemoglobin levels and the development of thrombocytopenia within the first month of treatment. Anemia is an expected dose-dependent side effect of ruxolitinib, and Mr M required blood transfusions twice monthly during the first 2 months of therapy. An important note is that the development of anemia does not limit the efficacy of ruxolitinib, and patients still feel better despite developing a transient, therapy-related anemia. Improvement often occurs after an initial decline in hemoglobin levels, and patients may no longer need transfusions.5 Once a patient is stable, reducing follow-up to once monthly and then every 3 months is generally acceptable.

34 ONCOLOGY NURSE ADVISOR • NOVEMBER/DECEMBER 2018 • www.OncologyNurseAdvisor.com

Mr M continues to have symptomatic improvement and stable laboratory values with infrequent packed red blood cell transfusions. His spleen has decreased in size considerably. He continues to follow-up with pulmonology at this time; however, no interventions have been initiated for the previously diagnosed pulmonary hypertension. We will continue a team approach to managing Mr M’s treatment. ■

REFERENCES

ruxolitinib for myelofibrosis. N Engl J Med.

1. Arber DA, Orazi A, Hasserjian R, et al. The 2016 revision to the Whole Health Organization classification of myeloid neoplasms and acute leukemia. Blood. 2016;127(20):2391-2405. 2. Rumi E, Cazzola M. Diagnosis, risk

2012;366(9):799-807. 4. Jakafi® [package insert]. Wilmington, DE: Incyte Corporation; 2016. 5. Verstovsek S, Mesa RA, Gotlib RS, et al; COMFORT-I investigators. Results of

stratification, and response evaluation in

COMFORT-I, a randomized double-

classical myeloproliferative neoplasms.

blind phase III trial of JAK 1/2 inhibitor

Blood. 2017;129(6):680-692.

INCB18424 (424) versus placebo (PB) for

3. Verstovsek S, Mesa RA, Gotlib J, et al. A double-blind, placebo-controlled trial of

patients with myelofibrosis (MF). J Clin Oncol. 2011;29(suppl):Abstr 6500.

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RADIATION & YOUR PATIENT

Radiation Genomics: The Search for Predictive Biomarkers Bryant Furlow Radiogenomics researchers are seeking genetic biomarkers that can predict which patients are most likely to suffer radiotoxicities and which can safely undergo intensified radiation oncology treatment regimens. Recent studies have identified candidate gene polymorphisms and validated the association between the candidate radiotoxicity gene variant C-509T and the development of radiation-induced breast fibrosis.

adiation genomics is the search for gene variants associated with patients’ responses to radiation therapy. Like the separate, emerging

discipline of imaging genomics — the study of medical imaging features that reveal details of gene expression in tumors or other tissues — radiation genomics is frequently referred to as radiogenomics. If irradiation of patients’ healthy non-targeted tissue could be avoided entirely and an entire radiation dose could be precisely targeted to tumor tissue, radiotherapy would be a routinely curative treatment modality. In reality, of course, beam paths and targeting uncertainties and errors all render that impossible. But external beam radiotherapy techniques have advanced dramatically in recent years to tailor radiation fields to tumor contours and minimize off-target irradiation. If researchers can identify and validate genomic biomarkers to predict radiosensitivity for risk stratification, radiation oncologists should be able to even more precisely tailor radiotherapy regimens to individual patients, bringing radiation oncology more fully into the “personalized medicine” era.1-4 Markers of radiotoxicity risk could identify which patients can safely undergo intensified radiotherapy regimens and which should be spared the probable adverse effects of aggressive treatment.5 Genomic biomarkers of gene expression might also serve as early indicators of radiation toxicity for more timely changes in treatment, such as fractional dose de-escalation.2,5 Progress in this field has seemed at times to move at a glacial rate. Early work focused on the possible role of DNA-repair and cell cycle checkpointregulating gene variants in modulating radiotoxicity risks in prostate and breast cancer treatment and to a lesser extent lung cancer radiotherapy.4 But recent years have seen important advances and validation efforts that could point the

way forward toward clinical translation of radiogenomic tools.4.6-8 The American Society for Radiation Oncology (ASTRO), the American Association of Physicists in Medicine, and the National Cancer Institute published a joint report on genomically guided radiation therapy.3 The report concluded that genomically guided radiotherapy is “a necessity that must be embraced in the coming years,” and called for validation and translation research efforts to bring candidate genomic biomarkers into routine radiation oncology.3 An international study suggested that ATM, TNF-α, and IL6 gene single nucleotide polymorphisms (SNPs) might interact with breast cancer radiation toxicity risk, even though individual polymorphisms alone did not in univariate analyses.6 That prompted the investigators to suggest that interaction analysis should be studied in addition to individual gene variants.6 Researchers at the University of Texas MD Anderson Cancer Center in Houston reported that they had prospectively validated radiotoxicity gene variant C-509T for the first time in the promoter region of the transforming growth factor (TGF-beta) gene TGFB1.7 The researchers found that 3 years after radiotherapy, 14% of C-509T-positive women and only 4% of C-509T-negative women had experienced radiation fibrosis of breast tissue. They also found that poor wound healing was associated with fibrosis, implicating TGF-beta in both wound healing and radiation scarring.7 Separately, TGFB1 polymorphisms have also been implicated in radiation esophagitis in patients with lung cancer.4,9 In a study of women with breast cancer, C-509T status did not predict responses to radiotherapy regimens.7 But study co-investigator Benjamin

36 ONCOLOGY NURSE ADVISOR • NOVEMBER/DECEMBER 2018 • www.OncologyNurseAdvisor.com

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RADIATION & YOUR PATIENT Smith, MD, said that C-509T status might help determine who can safely undergo tumor-bed radiation boosts without increased fibrosis risk. “In our trial, every patient received a boost,” Dr Smith said. “I think it’s reasonable to conclude that if you do not have this variant allele and you do receive a boost, you’re not very likely to experience fibrosis. I think it’s reasonable to take it a step further and say we know the boost is the key reason patients experience fibrosis in the first

status could inform posttreatment breast reconstruction decision making, although more research is needed, Dr Smith was quick to caution. ■

5. Andreassen CN, Eriksen JG, Jensen K, et al.

Bryant Furlow is a medical journalist based in Albuquerque, New Mexico.

6. Cordoba EE, Lacunza E, Abba MC,

place, so if you have that allele and get a boost, that will increase your risk substantially.” Because implant breast reconstruction carries a higher risk for fibrosis than autologous tissue reconstruction, the findings also suggest that C-509T

de-escalation and personalized medicine in radiotherapy for head and neck cancer. Oral Oncol. 2018;86:91-99. Fernandez E, Guerci AM. Single nucleotide polymorphisms in ATM, TNA-α and IL6

REFERENCES

genes and risk of radiotoxicity in breast

1. Spence W. Personalising prostate radiothera-

cancer patients [published online June 1,

py in the era of precision medicine: a review [published online March 12, 2018]. J Med Imag Radiat Sci. doi: 10.1016/jmir.2018.01.002 2. Tomasik B, Chałubińska-Fendler J,

C-509 status could inform breast reconstruction decision making

IMRT—biomarkers for dose escalation, dose

2018]. Mutat Res Gen Tox En. doi: 10.1016/j. mrgentox.2018.06.005 7. Grossberg AJ, Lei X, Xu T, et al. Association of transforming growth factor β polymor-

Chowdhury D, Fendler W. Potential of serum

phism C-509T with radiation-induced fibrosis

microRNAs as biomarkers of radiation injury

among patients with early-stage breast

and tools for individualization of radiothera-

cancer: a secondary analysis of a randomized

py. Transl Res. 2018;201:71-83.

clinical trial [published July 19, 2018]. JAMA

3. Hall WA, Bergom C, Thompson RF, et al. Precision oncology and genomically

Oncol. doi: 10.1001/jamaoncol.2018.2583 8. Schack LMH, Petersen SE, Nielsen S, et al.

guided radiation therapy: a report from the

Validation of genetic predictors of late radi-

American Society for Radiation Oncology/

ation-induced morbidity in prostate cancer

American Association of Physicists in Medicine/National Cancer Institute Precision

patients. Acta Oncol. 2017;56(11):1514-1521. 9. Guerra JL, Gomez D, Wei Q, et al. Association

Medicine Conference. Int J Radiat Oncol Biol

between single nucleotide polymorphisms

Phys. 2018;101(2):274-284.

of the transforming growth factor beta 1

4. Rosenstein BS. Radiogenomics: identification

gene and the risk of severe radiation esopha-

of genomic predictors for radiation toxicity.

gitis in patients with lung cancer. Radiother

Semin Radiat Oncol. 2017;27(4):300-309.

Oncol. 2012;105(3);299-304.

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COMMUNICATION CHALLENGES

Deciphering Persistent Questions

Ann J. Brady, MSN, RN-BC, CHPN

Sometimes we have to dig down to figure out what the person is really asking.

icture this familiar scenario: I’m on a long drive with my children when one of them speaks up from the back seat, “Are we there yet?” Then a few minutes later, “Mom, how much longer?” I respond, “Not yet.” Then, “Another hour.” Five minutes later the same questions: “Are we there yet?” “How much longer?” I respond, “I already told you. About another hour.” This same question and answer goes on several times. Each time I patiently answer. Yet in the space of only a few minutes the questions are repeated: “Are we there yet?” “How much longer?” I answer the questions with factual information, I say we are not there yet but we will be in approximately an hour. But is that really the question? It is framed as a question, but it isn’t a question as much as it is a statement: I’m tired of this long drive. I want to get out of the car. I don’t know how to fill the time. I’m bored. I can’t see where we are going.

CASE Sometimes we have to dig down to figure out what the person is really asking. One recent patient, Teresa, experienced a rapid disease progression. She had pancreatic cancer and was only half way through her first line of chemo drugs when she developed an infection and ended up in the hospital. In addition, she had liver involvement and became confused, which left her husband, Sam, to navigate an uncharted course without her input. He kept repeating, “If we could just get her to wake up and make sense long enough I could ask her what she wants.” They already had the larger conversation; she wanted to be DNR. But, she also said she wanted to fight as long as there were treatment options available. Unfortunately, there were none because of how ill she was. Sam articulated that he understood they were caught between two bad places. He could see how quickly she was declining. “What is next?” he asked. The answer included reviewing her current condition and outlining both possible scenarios: she would improve and be able to get chemo or she would continue to decline and go on hospice. Sam nodded, even asked further questions about improvement changes, which were thoroughly answered by the medical oncologist. At the end of the explanation he asked again, “But what is next?” His question did not reflect the understanding he had articulated earlier. Her doctor promised if Teresa got stronger, she could get chemo, but the oncologist also told Sam, “Looking at her, clinically I don’t think that will happen.” A moment or two passed before he again asked, “What is next?” The doctor said, “Wait and see.” When we

www.OncologyNurseAdvisor.com • NOVEMBER/DECEMBER 2018 • ONCOLOGY NURSE ADVISOR 39

COMMUNICATION CHALLENGES

The question for all of us is figuring out how to answer the question that may not be asked, yet persists.

arrived to check in, he asked us the same question, “What is next?” Another recent patient, Mildred, had colorectal cancer that was in an advanced stage at the time of diagnosis. She had presented to the ED with abdominal pain that turned out to be an obstruction requiring surgery and a colostomy. She was barely beginning her post-op recovery when she was told her surgery had confirmed the worst suspicion: she had cancer, it was stage IV, and it was incurable. But Mildred is pragmatic by nature. She took in the information, was able to express her surprise and distress, but also immediately said, “Okay, so what is next?” Next was chemo. She bolstered her strength, followed all medical instructions and education, and handled the chemo relatively well. Throughout her treatment she followed the diet outlined by the dietitian exactly as it was described to her — low residue, bland. The objective was to prevent another obstruction. Her initial response to chemotherapy treatment was robust, and she felt well for several months. Following a rather unappealing diet was acceptable because it mitigated her risk of blockage. Eating conservatively was its own treatment plan, and she embraced it with the same commitment as she had her post-op recovery instructions and her chemo regimen. As long as her cancer responded, she was willing to abide by the dietary restrictions. But her cancer stopped responding to treatment. She began to have more symptoms: pain, nausea, and an abdomen she called “my 7-months-pregnant-belly.” The notion that following a strict diet would prevent problems with her cancer no longer had the same draw. Her question was, “Do I have to stay on the low-residue diet?” Every person she asked — dietitian, medical/oncologist, surgeon — answered the same way. “Yes. You are at greater risk of another obstruction, so a low residue diet is important.” When she complained about how unpalatable it was, the response did not change. “Stay on the diet.” Was she asking the right question? Were we answering her question correctly? Of course, technically from all medical standpoints,

following the restrictive diet was important. But Mildred’s question was not about the diet. It was about putting the diet and risk of obstruction into context. “I’m dying. I don’t want to stay on the diet. I’d like to be able to eat foods I like.” Mildred understood the risk of obstruction; after all it had been explained and reinforced as a basis of advocating for the diet. But she also knew that not being able to eat the foods she wanted had taken on new significance for her as she got closer to dying. “I don’t want to go hog wild,” she said, “I just want to eat some of the foods I like that everyone is saying I should avoid.” DISCUSSION What is the question? Which brings me back to kids in a car on a long drive. “Are we there yet?” “How much longer?” Both of these patients/families were waiting and wondering the same thing. Sam could not see the road ahead. After asking and answering his question again and again, it was time to reassess, time for us to ask a question. “I wonder if you are trying to ask something else.” Instead of repeating our answers, getting frustrated, it was up to us to reframe his question. For Mildred, she was clear. She wanted to be able to eat the foods she liked. But her question was bound to get the same clinical response, Yet her question was also different than what she appeared to be asking. She wanted permission to veer off the strict diet because she understood her time was limited. She had to reframe the question for those she posed it to. Accepting that kids don’t understand when they ask “how much longer is the car trip” is easy. We reassure them. What about Sam and Mildred? Do we give them the same accommodation? In so many ways, the questions they were asking were the same. “Are we there yet?” “How much longer?” And the question for all of us — the communication challenge — is figuring out how to answer the question that may not be asked, yet persists. ■ Ann Brady is a symptom management care coordinator at a cancer center in Pasadena, California.

44 ONCOLOGY NURSE ADVISOR • NOVEMBER/DECEMBER 2018 • www.OncologyNurseAdvisor.com

THE TOTAL PATIENT

Palliative Care in Lung Cancer: Reducing Risk of Suicide Ideation in Military Veterans Bette Weinstein Kaplan

ow much of a difference can palliative care make in the lives of terminally ill patients? Can the intervention actually lead to reduced rates of suicide in certain atrisk populations? Those are questions Donald Sullivan, MD, and his team sought to answer with their investigation into the role of palliative care in the treatment of US military veterans with advanced lung cancer.1 Dr Sullivan is assistant professor of pulmonary and critical care medicine, the Oregon Health & Science University (OSHU) School of Medicine and Knight Cancer Institute, and core investigator at the Center to Improve Veteran Involvement in Care at the Veterans Affairs (VA) Portland Health Care System. The circumstances amount to a perfect storm: Suicide is a leading cause of death in this country on its own; suicide rates are higher among people with cancer, particularly lung cancer; and veterans are significantly more likely to take their own life than other Americans. Other mitigating factors also contribute to higher suicide rates among veterans with lung cancer. Advanced cancer accompanied by a high symptom burden and low physical function increases this risk. Depression, often a comorbidity, further exacerbates the risk for suicide among these patients.

A PLACE FOR PALLIATIVE CARE Because palliative care can improve many risk factors for untoward events, Dr Sullivan and his team sought to determine if veterans with advanced lung cancer would benefit from the intervention. For their analysis, the investigators reviewed the data from approximately 20,900 veterans in the VA Central Cancer Registry who had advanced lung cancer (stages IIIB and IV) between January 2007 and December 2013.1 Patients were determined to have committed suicide if the cause of death was listed as ICD-9-CM E950.x (suicide and self-inflicted injuries) or ICD-10-CM X60-X84 (intentional self-harm). Exclusion criteria included if the cause of death was listed as unknown (less than 1% of cases). Although 88% of patients with lung cancer died from their disease, suicide was listed as the cause of death in 30 patients. Firearms was the method used in most of the suicide cases, and median time from cancer diagnosis to death by suicide was 91 days.

Palliative care appears to improve heavy symptom burden and QOL.

“We found a suicide rate almost 6 times higher among patients with advanced stage lung cancer who did not receive palliative care compared with a matched sample from the general veteran population who did. Palliative care was associated with a significant reduction in this risk: reducing the odds by approximately 80%,” Dr Sullivan explained in an interview with Oncology Nurse Advisor. Because suicide is a relatively rare event, its incidence is often reported per 100,000 person years. In the United States, the suicide rate is approximately 13 per 100,000 person years, and among veterans who use VA health care, it is approximately 35 per 100,000 person years. The incidence in our cohort — 30 events among approximately 21,000 patients — was approximately 210 per 100,000 person years, which represented a 579% increase compared with the age, sex, and year of death adjusted rate among veterans who use VA health care. This incidence rate varies somewhat from year to year and represents data from a national health system with more than 9 million enrollees over 7 years (DR Sullivan, electronic communication, September 2018). CALMING THE STORM Palliative care appears to improve heavy symptom burden and quality of Continues on page 47

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FROM

HAIR LOSS SOLUTIONS Hair loss can be a distressing treatment side effect. Currently, women with breast cancer have many options to help them feel more comfortable with their appearance such as wigs, hats, scarves, and turbans. In addition, there are organizations that help women obtain wigs during their treatment. CancerCare’s Wig Clinic recognizes that coping with appearancerelated effects of cancer can be difficult.

Strength and Hope for Women in the Midst of Cancer Essie Roman, LMSW

The Wig Clinic is an opportunity for women receiving chemotherapy for any type of cancer to receive a free wig. A wig fitter is on-hand to provide individual fittings that include discussions on hair color, style, and length, as well as caring for the wig, and to help women try different wigs to find one she is comfortable

wearing. An oncology social worker is also present to provide support. At one fitting, a woman expressed her gratitude, saying, “You helped me find the perfect color and wig for me.” Many CancerCare clients have expressed that their wig allows them to feel fun, beautiful, and special, and they are grateful for the opportunity. Another client once said, “My experience at CancerCare was great. The staff helped me, answered my questions to the best of their ability, and made me feel comfortable trying on wigs and hats.” APPEARANCE SOLUTIONS Surgery is a treatment option that involves many posttreatment options for a woman with cancer to consider. Being informed about available resources, such as breast prostheses, in case a woman chooses to forgo reconstruction, is important. Women can choose from different prostheses to find one that will make her feel comfortable with her appearance. CancerCare’s Prosthesis Clinic is provides women with breast cancer who underwent mastectomy with appropriate supplies. The clinic’s aim is to empower women with cancer to look and feel their best. Women are fitted by a certified fitter every time they are seen and are able to leave with their prosthesis and mastectomy bras. The service is provided on a yearly basis, a maximum of 3 yearly visits, if they live in the 5 boroughs of New York. As the leading national organization dedicated to providing free, professional support services, CancerCare provides these mastectomy supplies free of charge.

Potential side effects, such as hair loss, can add another layer to the myriad emotions that a woman may experience. 46 ONCOLOGY NURSE ADVISOR • NOVEMBER/DECEMBER 2018 • www.OncologyNurseAdvisor.com

reast cancer is the most com mon cancer in American women after skin cancers. Currently, the average risk for a woman in the United States of developing breast cancer sometime in her life is approximately 12%. This means a woman has a 1 in 8 chance of developing breast cancer, according to the American Cancer Society (ACS).1-3 A woman receiving a breast cancer diagnosis will face many decisions. Even after each treatment option has been explained, she may still struggle with selecting which option — surgery, chemotherapy — is best for herself. Potential side effects, such as hair loss, can add another layer to the myriad emotions that a woman may experience when starting treatment. The National Coalition for Cancer Survivorship explains hair loss following chemotherapy and radiation as a result of the atrophy of the hair follicle. Hair becomes weak and brittle and either breaks off at the surface of the scalp or falls out of the follicle. The amount of hair loss depends on the type, dose, and length of treatment.

A bimonthly clinic provides free wigs and breast prostheses to women who are undergoing chemotherapy and/or radiation and have undergone a total mastectomy. A recent client who was fitted for a double mastectomy shared, “I didn’t know that I would react this strongly [as she was holding back her tears]. I feel whole again.” The women who visit the clinic are so appreciative of the privacy they are given and gentleness with which they are fitted. Another patient expressed that they were “very grateful to know that people care and want us to feel good and better.” CONCLUSION

There are many resources for obtaining a free wig. Patients can speak with an oncology social worker at CancerCare for help obtaining a free wig by calling 800‑813‑HOPE (4673). CancerCare’s Online Helping Hand is another help‑ ful tool (www.cancercare.org/helping‑ hand). It is a searchable, online database

The Total Patient Continued from page 45

life enough to reduce suicidal ideation in patients. Its benefits for veterans with advanced lung cancer was found to be similar to that of patients with any serious disease, further supporting the recommendation to integrate palliative care as early as possible in the course of treatment. Palliative care professionals endeavor to help patients identify their prefer‑ ences and values, achieve their care goals, and experience better quality of life. As an independent prognostic factor for survival, having a better quality of life can discourage patients

Godiva’s Wigs

Though having well-fitting wigs and prostheses may seem like secondary concerns, providing these items — and a safe environment within which to learn about them — can go a long way toward helping a patient feel supported and positive about her appearance while she is undergoing treatment. At the end of the day, having an impact on those living with cancer is all that matters. ■

The Pink Fund

Essie Roman is the Women’s Clinical Program Coordinator at CancerCare.

Wig Resources Look Good Feel Better Program http://lookgoodfeelbetter.org/

Wigs and Wishes

www.wigsandwishes.org/

www.godivassecretwigs.com

www.thepinkfund.org

REFERENCES 1. About Breast Cancer. American Cancer

of practical assistance, including wigs. Local American Cancer Society chapters may also have services or offices that offer free wigs. In addition, the hospital where patients are receiving treatment may have a wig clinic or know of resources. The need for these important services is being addressed on a local level, making it easier for the patient to be properly fitted for a wig.

with advanced lung cancer from pre‑ maturely ending their lives.2 Oncologic and thoracic societies often suggest integrating palliative care, but its uptake has been slow, Dr Sullivan’s team noted. The interven‑ tion continues to be underutilized in patients with cancer. “Our results rein‑ force the importance of timely pallia‑ tive care among patients with advanced lung cancer,” the investigators stated. They conclude that palliative care should be a part of enhanced suicide prevention and treatment efforts that are urgently needed.1 Veterans of the US Armed Forces deserve the very best medical care, including optimal palliative care to heal

Society website. https://www.cancer.org/ cancer/breast-cancer/about.html. Accessed November 28, 2018. 2. Christ G, Messner C, Behar L, eds. Handbook of Oncology Social Work: Psychosocial Care for People with Cancer. New York, NY: Oxford University Press; 2015. 3. Hoffman B, ed. A Cancer Survivor’s Almanac: Charting Your Journey. Minneapolis, MN: Chronimed Publishing; 1996

them inside and out and to assure that each of them has an enhanced quality of life: a life worth living. ■ Bette Weinstein Kaplan is a medical writer based in Tenafly, New Jersey. REFERENCES 1. Sullivan DR, Forsberg CW, Golden SE, Ganzini L, Dobscha SK, Slatore CG. Incidence of suicide and association with palliative care among patients with advanced lung cancer [published online July 26, 2018]. Ann Am Thorac Soc. doi: 10.1513/AnnalsATS.201805-299RL 2. Sloan JA, Zhao X, Novotny PJ, et al. Relationship between deficits in overall quality of life and non-small-cell lung cancer survival. J Clin Oncol. 2012;30:1498-1504.

www.OncologyNurseAdvisor.com • NOVEMBER/DECEMBER 2018 • ONCOLOGY NURSE ADVISOR 47

ASK A PHARMACIST

Counseling Patients on Adhering to Their Oral Chemotherapy What are some tips for speaking to patients about adherence to oral cancer medications? — Name withheld on request

Adherence to oral chemotherapy as well as the associated monitoring for toxicity and efficacy is critical to promoting a positive cancer outcome. Patients may be either nonadherent (eg, they take lower doses or take their medications less frequently than prescribed), or overadherent (eg, they take higher doses, take their medications more frequently than prescribed, or do not comply with recommendations to interrupt therapy if toxicity occurs). This may be inadvertent (eg, they are

confused about medication instructions or they forget to take doses) or intentional (eg, they take less drug than prescribed because they are concerned about the cost or take more drug in the hopes of improved efficacy). Discussions with patients on adherence should be conducted routinely and in an open, nonjudgmental manner. Studies have shown that routine discussions on adherence may help to improve adherence rates among patients taking chronic medications, as it emphasizes to the patient that adherence is important. Asking open-ended questions (eg, questions that cannot be answered with a simple “yes” or “no”) is also very helpful. These types of questions have been shown to result in the patient providing more details and with better accuracy. For example, rather than asking “Have you missed any doses of your chemotherapy this cycle?” a more helpful question may be “How many doses of your chemotherapy have you missed this cycle?” Patients may feel that admitting to nonadherence means they are disappointing their providers or being a “bad” patient. Being nonjudgmental will increase the likelihood that a patient will feel comfortable admitting to nonadherence. Once the discussion on adherence has occurred, relating your recommendations back to the specif ic

factors that may be contributing to the patient’s nonadherence is important. These issues may be related to financial toxicity, lack of understanding of their treatment and its risks and benefits, logistical challenges (eg, transportation issues preventing timely lab draws), forgetfulness, or a host of other issues. You should work with the patient (and their caregivers, as appropriate) to develop a plan that addresses these issues in a way that is acceptable to the patient. Ensuring that the treatment plan and the means of promoting adherence are congruent with the patient’s priorities is an important factor in encouraging the patient toward optimal adherence to the treatment plan. ■ DRUG ENFORCEMENT AGENCY (DEA) DRUG TAKE-BACK DAY The most recent DEA Drug Take-Back Day events occurred at more than 5800 locations, and more than 457 tons of unused medications were collected. These events prevent diversion of medicines as well as protect our environment by reducing the amount of medications in landfills. The next event is in April 2019; information for patients seeking to dispose of unused medications before then is available at https://takebackday.dea.gov/.

Lisa A. Thompson, PharmD, BCOP Clinical Pharmacy Specialist in Oncology Kaiser Permanente, Colorado

48 ONCOLOGY NURSE ADVISOR • NOVEMBER/DECEMBER 2018 • www.OncologyNurseAdvisor.com

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