Living on the Fringe: Palliative Social Workers as Advocates

1. Living on the Fringe: Palliative Social Workers as AdvocatesFrom Policy to Practice Myra Glajchen, DSW, MJHS Institute for Innovation in Palliative Care Gary Stein, JD, MSW, Wurzweiler School of Social Work Donna Zhukovsky, MD, MD Anderson Cancer Center

2. Introduction • Social Workers comprise core members of the interdisciplinary team in palliative care and hospice • As a profession, social work is rooted in psychosocial theory and practice as well as advocacy for groups typically marginalized from mainstream medicine • As Palliative Care gains traction as a recognized medical specialty for people with advanced and terminal illness, more people have access to high quality specialist level care that is based on illness severity and symptom burden • In spite of this priority, large groups of people encounter barriers to person-centered palliative care Identifying these patients and providing care within this highly regulated industry is challenging

3. Session Objectives • Highlight the issues confronting socially disenfranchised patients at end of life • Identify barriers that limit access to palliative care for disenfranchised societal groups • Illustrate best practices for decision-making for patients deemed isolated, lacking in capacity, or unrepresented • Highlight barriers to care from the patient perspective and illustrate strategies to facilitate person-centered end-of-life care for homeless and unrepresented patients

4. Barriers to Care

5. What is the definition of an isolated patient? • According to NYS PHL 29-CC, isolated patients are patients who: • are adults; • lack decision-making capacity for health care decisions; and • do not have a health care agent or health care surrogate reasonably available or willing to make health care decisions on their behalf

6. What is the 3-step Decision-Making Process for Isolated Patients? • According to the FHCDA, there is a three-step process for isolated patients considering hospice care • Attending MD • Confirming MD • Ethics Review Committee • In each step, decision-makers are asked to determine that the proposed course of action • is in accordance with the patient’s wishes, including the patient’s religious and moral beliefs; or • if the patient’s wishes are not reasonably known and cannot with reasonable diligence be ascertained, in accordance with the patient’s best interests

7. What is the 3-step Decision-Making Process for Isolated Patients? • An assessment of the patient’s best interests includes: • consideration of the dignity and uniqueness of every person • the possibility and extent of preserving the patient’s life • the preservation, improvement or restoration of the patient’s health or functioning; the relief of the patient’s suffering and • any medical condition and such other concerns and values as a reasonable person in the patient’s circumstances would wish to consider • (PHL§2994-d (4)

8. Case Narrative • Mr F is an 80 year-old man admitted to the hospital for symptom management • He presents with congestive heart failure, shortness of breath, cough, wheezing, chest pain • Comorbidities include fatigue, muscle wasting, weight loss, memory loss, dizziness • He presents with anxiety, depressed mood and insomnia • His has had altered mental status since admission • He cannot track, does not respond to touch, but will grimace in response to purposeful painful stimulus • He develops acute pneumonia and has a mild heart attack

9. Case Narrative • Mr F is not alert or oriented • He cannot make decisions for himself • He has no surrogates and no health care proxy • He is transferred to the ICU where he is placed on a ventilator and started on artificial hydration and nutrition • He is then referred to the palliative care team for consultation

10. Case Narrative • The ICU calls the palliative care team for consultation • The team notes that that Mr F qualifies for hospice based on his terminal prognosis, multiple comorbidities, and lack of identified curative treatments • They recommend admission to hospice • Unfortunately, Mr F is now non-verbal and the hospital staff has very little information about him • The medical resident is asked to contact the referring nursing home where Mr F has resided for ten years • The nursing home reports that Mr F has no visitors and there have been no family or friends involved in his care • He has been non-verbal for some time

11. Case Narrative • The palliative care team provides medical management for Mr F’s symptoms, but his condition continues to decline • The ICU attending refers Mr F to hospice • First, he follows the three-step process for isolated patients considering hospice care laid out by the FHCDA • As the Attending, he deems the patient isolated, unrepresented and lacking decisional capacity • He obtains corroborating evidence from the Palliative Attending who acts as the confirming physician • He calls the Ethics Committee for consultation • The Ethics Committee reviews the chart, meets with the patient and speaks with the ICU staff • They approve the decision to move Mr F to a hospice facility

12. Case Narrative • Mr F is removed from the vent • He is transferred to a hospice facility with a high nurse to patient ratio • His symptoms are treated aggressively with oxygen, fluids, and morphine • He does not regain consciousness • He dies 6 days later and is buried in Potter’s Field • One year after his death, Mr F’s sister calls the hospice administrator seeking information about her brother’s death • She mentions that he was a veteran

13. Role of the Social Worker in Mr F’s Case • Perform due diligence when Mr F was transferred from the outside facility. • This patient came from an outside LTC facility and hospital • There were at least five social workers involved, but they did not communicate with each other directly • Palliative care and hospice staff cannot assume the isolated patient label is appropriate until they contact other facilities, review the chart, contact known organization such as the VA, and try to contact any listed caregivers

14. Role of the Social Worker in Mr F’s Case • Take the lead in performing due diligence for isolated patients • Cast a wide search for patient information which may be critical to decision-making • Seek information beyond the inpatient setting • Use social media and online search forums • Communicate within and across settings • Checklist to search for relatives and/or advance directives was developed by Terry Altilio at Mount Sinai Beth Israel

15. Role of the Social Worker in Mr F’s Case • Check cell phone for numbers • Search patient’s possessions for identifying information • Access databases from medical records and prior admissions • Access advance directives, information about relatives, ED records, SWK assessments, discharge planning information • Access information about insurance coverage, try to locate prior proxy forms and other advance directives • Contact nursing home staff and ask for a review of records

16. Role of the Social Worker in Mr F’s Case • Contact prior practitioners, community agencies and health care systems that have cared for the patient • Veteran’s Hospitals • Dialysis Centers • Oncology providers • Methadone maintenance programs • Primary care community physicians • Home care agencies • Homeless Services • Medicare, Medicaid • State Medicaid psychiatry database • Missing Persons Bureau

17. Role of the Social Worker in Mr F’s Case • Facebook • Cross-reference across sites • AdvancedBackgroundchecks.com • Whitepages.com • peoplefinders.com • peoplesearch.com • A paid search may be authorized by administration. These sites may recover DOB, phone numbers, address, relatives • Police Department

18. Best Social Work Practices • Develop a standardized approach for gathering, synthesizing and organizing information • Don’t come to premature closure • Don’t feel rushed by internal or external pressure • Take the time necessary to conduct a thorough analysis • Don’t make recommendations through informal curbside consultation • Don’t assume your written note will be understood without verbal communication, clarification, education • Embrace the complexity of each case with humility • Advocate for adequate resources • Carresse, J Clinical Ethics, 2012

19. Conclusions • This case illustrates the complex interplay of medical, psychosocial and ethical issues when dealing with isolated patients who lack capacity • Social Workers play a key role in palliative and end-of-life care, as core members of the interdisciplinary team with a dual focus on the person-in-situation context

20. End-of-Life Care for the Homeless Donna S. Zhukovsky, MD FACP FAAHPM The University of Texas MD Anderson Cancer Center Houston, Texas

21. Dr. Zhukovsky has no financial relationships to disclose

22. Mr. OI: “I am a famous soccer coach” • 63 year old professional athlete with recurrent prostate CA→ bone, LN and lung • resided in Northeastern U.S. with sister x 11 years • Presented to MDACC EC with pain for treatment; non-adherent with recommendations-lost to follow up • Returned to EC 8 months later with pain; admitted 6 times over ensuing 7 months with pain • Continued to believe cancer was curable despite conversations re prognosis and palliative goals of treatment

23. Mr. OI: “ I am a famous soccer coach” • Course complicated by lack of adherence to medical recommendations, uninsured status, limited social support, inconsistent reports of personal circumstances and unrealistic expectations of health care system • Social Work, Case Management, Supportive Care, Psychiatry, Risk Management and Patient Advocacy involved • Final admission precipitated by inability to stay at Salvation Army shelter due to medical needs • Declined discharge due to perceived need for urgent chemotherapy • Offered admission to medical respite shelter, but decided to return to home of wife and children for oncologic care • Role of trusting relationships over course of treatment allowing him to consider his priorities?

24. Objectives • Review the demographics and co-morbidities of homeless individuals • Describe perspectives of homeless regarding end-of-life (EOL) care • Identify barriers that limit access to palliative care from the perspectives of homeless individuals and health care systems • Illustrate strategies to facilitate EOL care for this population

25. What is the definition of… Couch surfing Homeless Harm reduction program Unbefriended Rough sleeper

26. Homelessness: Definition* A person who: • Lacks a fixed, regular and adequate nighttime residence and who lives in a shelter or a place not designed for human habitation • At imminent risk of housing loss within the next 2 weeks • Fleeing from domestic violence with inadequate resources to obtain permanent housing May be sheltered or unsheltered; doubled up (stable or couch surfing) *https://law.justia.com/codes/us/2014/title-42/chapter-119/subchapter-i/sec.-11302

27. Chronically Homeless Individual An individual with a disability who has: • been continuously homeless for > 1 year or • experienced >4 episodes of homelessness in the last 3 years where the combined length of time homeless is > 12 months https://www.hudexchange.info/resources/documents/2017-AHAR-Part-1.pdf

28. Not all homelessness is visible

29. How we count matters Point In Time (PIT) count • Last week in January; most communities • Unsheltered, in emergency shelters or in transitional housing • Does not include families, youth and those who are doubled up Homeless Management Information Systems (HIMS) count • Everyone reported in HIMS over a year • Annualized and nationally representative • Excludes individuals who do not use transitional housing or shelters at all during the course of the year and those in domestic violence shelters

30. Homelessness in the U.S. 553,742 homeless in U.S. on a single night in 2017 • First increase in 7 years • Driven by number of unsheltered individuals in 50 largest cities • Estimated 2.3-3.5 million in a year In 2016, 1.42 million people used an emergency shelter or a transitional housing program at some point during the year

31. What triggers homelessness? http://www.homelesshouston.org/homelessness-101/

32. Morbidity • ↑ risk of co-morbid conditions compared to general population • Infections and chronic illness • Cancer, ESLD, COPD, heart disease • Psychiatric illness • Substance abuse • Violence • More likely to use Emergency Department than non-homeless • 3x more likely to present>1x/year • More likely to be admitted from ED • Cancer, ESLD, COPD, CHF (related to tobacco, ETOH and drugs) • High symptom burden compared to general population & to other illnesses • >1 major medical condition; negative response to “surprise” question • 3 comparator studies with severe illness (oncology, HIV and other non-cancer severe illness) www.cdc.gov/features/homelessness/index.html Henwood BF. BMC Public Health. 2015; 15: 1 Hibbs JR. N Engl J Med. 1994; 331: 309 Hwang SW. Ann Intern Med. 1997;126: 625 https://hcup-us.ahrq.gov/reports/statbriefs/sb229-Homeless-ED-Visits-2014.pdf Tobey M. JPSM. 2017;53: 738

33. Mortality Premature mortality common: • Mortality rate ↑ 4-9x than non-homeless • Natural causes (illness) >violence, drug-related, environmental • Suicide, accidents and environmental > than in general population • Causes vary by age group Factors associated with increased mortality among homeless www.cdc.gov/features/homelessness/index.html Henwood BF. BMC Public Health. 2015; 15: 1. Hibbs JR. N Engl J Med. 1994; 331: 309. Hwang SW. Ann Intern Med. 1997;126: 625. https://hcup-us.ahrq.gov/reports/statbriefs/sb229-Homeless-ED-Visits-2014.pdf Montgomery AE. Public Health Reports. 2016; 131: 765. Suzuki H. Legal Medicine. 2013;15: 126. Page SA. J Soc Work End of Life Palliat Care. 2012;8: 265.

34. What Constitutes a Good and Bad Death?Perspectives of Homeless Older Adults* *Ko E. Death Studies. 2015;39: 422.

35. What Constitutes a Good and Bad Death?Perspectives of Homeless Older Adults* *Ko E. Death Studies. 2015;39:422.

36. Experiences and Attitudes Toward Death and Dying Among Homeless Persons* *Song J. Soc Gen Int Med. 2007;22: 427.

37. Experiences and Attitudes Toward Death and Dying Among Homeless Persons: Representative Quotes* “Me? I’d just like to be remembered by somebody” (Personal: fears and uncertainties) “I got out [of the hospital] and I’m walking, really sick, carrying my bags, and there was nowhere really to go…the doctors made it clear that my life was not their problem…”(Personal: personal-life threatening experiences) “It means some guys get heavy on the bottle; some get heavy on the drugs; some doggone start because of all the stress from the dying around us.” (Personal: approach to risk) “Have a doctor, an intern, or even have a medical student for a doctor, come and work at a shelter for a week to two weeks, just to show how it is, to get woke up at 6:00 in the morning and booted out, and getting a cold bowl of cereal from the branch for breakfast, and just shadowing somebody that has been homeless or is homeless, just feel what it’s like to, if just to say ‘I know this guy; he’s homeless and this needs to be taken care of right away’ and not making him wait. Then they will have an ideal of what it’s like to be homeless.” (Relational: relationships with strangers) Song J. Soc Gen Int Med. 2007;22: 427.

38. Themes for Personal Domain of EOL Care Song J. Soc Gen Int Med. 2007;22: 435.

39. Themes for Relational Concerns and Environmental Influences Domains Song J. Soc Gen Int Med. 2007;22: 435.

40. Homeless Persons Concerns and Desires about End of Life Care: Illustrative Quotes “Personally death comes like peace, but like John said, we look forward to it if we’re Christian because I can go and get my reincarnate body and dance without this one” (Personal: spirituality/religion) “Even though I’m a serviceman, if I was buried a national cemetery, I feel that my soul would be lost.” (Personal: veteran status) “I went to get medical care, something that they guaranteed me for life. They looked at me and said ‘OK, you have an honorable discharge.” As a matter of fact I have two. “Do you have insurance on your job?’ and I’m like, whoa. The insurance on my job, OK, when I signed these contracts you didn’t say that my insurance would be primary. You said that you would take care of it. So the VA does nothing.” (Personal: veteran status)” Song J. Soc Gen Int Med. 2007;22: 435.

41. Advance Care Planning and the Homeless • Discomfort with topic, not immediate concern, hesitancy to complete1,2 • Many see relevance and are willing to engage in ACP3 • Want approached with sensitivity and from relationship of respect, caring and trust1,2 • Assess unique concerns and needs, consider possible EOL situations & assist with planning for needs • Increased rates of AD completion with one-on-one counseling situations (vs. provision of educational materials and ADs alone)4,5,6 • 40-50% vs 12.5-30% 1 Tarzian AJ. J Palliat Med. 2005;8: 36. 2 Ko E. Am J Hospice Palliative Med. 2014;31: 183. 3 Song J. J Gen Intern Med. 2007;22: 435. 4 Leung AK. Palliat Med. 2015;29: 746. 5 Song J. Ann Intern Med. 2010;153: 76. 6 Song J. J Gen Intern Med. 2008;23: 2031.

42. Challenges to Access and Provision of Palliative Care • Chaotic lifestyle of being homeless • Delivery of EOL care and specialized PC within hostel • Provision of palliative care related to mainstream health systems Hudson BF. BMC Pall Care. 2016;15: 1.

43. Hudson BF. BMC Pall Care. 2016;15: 1.

44. Exemplar Programs Housing First and Harm Reduction Programs (U.S.) https://www.usich.gov/solutions/housing/housing-first/ McNeil R. BMC Public Health. 2012;17: 312. Inner City Health Project Hospice (Ottawa) Palliative Education and Care for the Homeless (Toronto) Cipkar C. UBCMJ. 2016;7.2: 19 www.icha-Toronto.ca/ Barbara McInnis House (Boston) O’Connell J. Am J Public Health. 2010;100: 1400. Podymow T. Palliative Med. 2006;20: 81

45. Reflections on Provision of Palliative Care to the Homeless • Come from all socioeconomic strata (not always visible) • Comorbid medical & psychiatric illness & substance abuse common • Premature mortality • Competing priorities with health care • Disenfranchisement and perceptions of discrimination common • Numerous social and practical barriers to accessing health care • Requiring conformance to our health care conventions limits access and engagement

46. Reflections on Provision of Palliative Care to the Homeless: What Can We Do Today? • Be vigilant in screening • Establish caring relationships of trust • Facilitate housing access • Consider harm reduction approaches Person-centered care "You got to go where he lives“* *Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: "You got to go where he lives". JAMA. 2001. 19;286(23):2993-3001.

47. The Tide Washes Out Again* “We are seashells on the ocean floor. The tide washes in with a flurry of volunteers to feed us and then they get in their cars and leave, heading back to the comfort of their warm beds. I remain, on the shore, watching the tide Wash out again.” Dave Volunteer in tent city (homeless encampment) Shelter resident Former police chief “I have an MBA” Divorced father of two sons *Kling TL. Health Affairs. 2017;36: 952.

48. Literature • Center for Disease Control and Prevention. www.cdc.gov/features/homelessness/index.html. Published December 2017. Accessed January 29, 2018. • Cipkar C, Dosani N. The right to accessible healthcare: Bringing palliative services to Toronto’s homeless and vulnerably housed population. UBCMJ. 2016;7.2: 19-20. • Coalition for the Homeless. http://www.homelesshouston.org/homelessness-101/. Published 2016. Accessed January 29, 2018. • Harmony House Inc. http://harmonyhouse.org/about-2/. Published 2018. Accessed January 29, 2018. • Henwood BF, Byrne T, Scriber B. Examining mortality among formerly homeless adults enrolled in Housing First: An observational study. BMC Public Health. 2015;15(1209): 1-8. • Hibbs JR, Benner L, Klugman L, Spencer R, Macchia I, Mellinger AK, Fife D. Mortality in a Cohort of Homeless Adults in Philadelphia. N Engl J Med. 1994;331: 304-309. • Hudson BF, Flemming K, Shulman C, Candy B. Challenges to access and provision of palliative care for people who are homeless: a systematic review of qualitative research. BMC Pall Care. 2016;15(96): 1-18. • Hwang SW, Orav J, O’Connell JJ, Lebow JM, Brennan TA. Causes of Death in Homeless Adults in Boston. Ann Intern Med. 1997;126(8): 625-628. • Inner City Health Associates (Toronto)-Who We Are. www.icha-Toronto.ca/ Published April 2017. Accessed January 29, 2018. • Justia US Law. https://law.justia.com/codes/us/2014/title-42/chapter-119/subchapter-i/sec.-11302. Published 2015. Accessed January 29, 2018. • Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: "You got to go where he lives". JAMA. 2001. 19;286(23): 2993-3001. • Kling TL. Dave Didn’t Have to Die: On Health Care for Homeless Patients. Health Affairs. 2017;36(5): 952-955. • Ko E, Kwak J, Nelson-Becker H. What Constitutes a Good and Bad Death?: Perspectives of Homeless Older Adults. Death Studies. 2015;39(7): 422-432. • Ko E, Nelson-Becker H. Does End-of-Life Decision Making Matter?: Perspectives of Older Homeless Adults. Am J Hospice Palliative Med. 2014;31(2): 183-188. • Leung AK, Nayyar D, Sachdeva M, Song J, Hwang SW. Chronically homeless persons’ participation in an advance directive intervention: A cohort study. Palliat Med. 2015;29(8): 746-755.

49. Literature continued • McNeil R, Guriguis-Younger M, Dilley LB, Aubry TD, Turnbull J, Hwang SW. Harm reduction services as a point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs: a qualitative analysis. BMC Public Health. 2012; 17(12): 312-320. • Montgomery AE, Szymkowiak D, Marcus J, Howard P, Culhane DP. Homelessness, Unsheltered Status, and Risk Factors for Mortality: Findings From the 100 000 Homes Campaign. Public Health Reports. 2016;131(6): 765-772. • O’Connell J, et al. Boston Healthcare for the Homeless Program: A Public Health Framework. Am J Public Health. 2010;100: 1400-1408. • Page SA, Thurston WE, Mahoney CE. Causes of death among an urban homeless population considered by the medical examiner. J Soc Work End of Life Palliat Care. 2012;8(3): 265.-271. • Podymow T, Turnbull J, Coyle D. Shelter-based palliative care for the homeless terminally ill. Palliative Med. 2006. 20: 81-86. • Song J, Bartels DM, Ratner ER, Alderton L, Hudson B, Ahluwalia JS. Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care. Soc Gen Int Med. 2007;22: 435-441. • Song J, Ratner ER, Bartels DM, Alderton L, Hudson B, Ahluwalia JS. Experience With and Attitudes Toward Death and Dying Among Homeless Persons. Soc Gen Int Med. 2007;22: 427-434. • Song J, Ratnar ER, Wall MM, Bartels DM, Ulvestad N, Petroskas D, West M, Weber-Main AM, Grengs L, Gelberg L. Effect of an End-of-Life Planning Intervention on the Completion of Advance Directives in Homeless Person. Ann Intern Med. 2010;153(2): 76-84. • Song J, Wall MM, Ratner ER, Bartels DM, Ulvestad N, Gelberg L. Engaging Homeless Persons in End of Life Preparations. J Gen Intern Med. 2008; 23(12): 2031-2036. • Sun R, Karaca Z, Wong HS. Characteristics of Homeless Individuals Using Emergency Department Services in 2014. (Statistical Brief #229) Published by Agency for Healthcare Research and Quality. Website: https://hcup-us.ahrq.gov/reports/statbriefs/sb229-Homeless-ED-Visits-2014.pdf. Accessed January 29, 2018. • Suzuki H, Hikiji W, Tanifuji T, Abe N, Fukunaga T. Medicolegal death of homeless persons in Tokyo Metropolis over 12 years (1999-2010). Legal Medicine. 2013;15: 126-133. • Tarzian AJ, Neal MT, O’Neil JA. Attitudes, experiences, and beliefs affecting end-of-life decision-making among homeless individuals. J Palliat Med. 2005;8(1): 36-48. • The U.S. Department of Housing and Urban Development. The 2017 Annual Homeless Assessment Report (AHAR) to Congress. https://www.hudexchange.info/resources/documents/2017-AHAR-Part-1.pdf. Published December 2017. Accessed January 26, 2018. • Tobey M, Manasson J, Decarlo K, Ciraldo-Maryniuk K, Gaeta JM, Wilson E. Homeless Individuals Approaching the End of Life: Symptoms and Attitudes. JPSM. 2017;53(4): 738-743. • United States Interagency Council for the Homelessness: Housing First. https://www.usich.gov/solutions/housing/housing-first/. Published January 2018. Accessed January 29, 2018. • Wendell Moller, D. Dancing with Broken Bones. New York, NY: Oxford University Press, Inc; 2012.

50. Health Care Decision-Making Policy for Vulnerable Elders:Examining Strategies for Unrepresented and Incapacitated Older Adults GARY L. STEIN, JD, MSW 2016-2017 Health and Aging Policy Program Fellow Professor Wurzweiler School of Social Work – Yeshiva University DAVID GODFREY, JD Senior Attorney American Bar Association Commission on Law and Aging