Palliative Care for Holocaust Survivors: Understanding Attitudes and Improving Access

1. National Hospice and Palliative Care Organization’sPalliative Care Resource SeriesCaring for Holocaust Survivors and Survivors of Other Traumatic Events at the End of LifeWritten by: Toby Weiss, MSODDirector of Cultural Sensitivity and Jewish ProgrammingMJHS Hospice and Palliative Care

2. Providing Palliative Care to Holocaust Survivors • Definition of Holocaust Survivors and the Holocaust • Holocaust Survivor Facts and Figures • MJHS Hospice and Palliative Care Two Year Holocaust Survivor Grant • Survey and Findings • Traumatization and PTSD • Reactions of Health Care Providers • Recommendations for Health Care Providers

3. Working Definition of Holocaust Survivor • Holocaust Survivors are defined as persons who lived in one of the countries that was occupied by, or under the influence of the Nazi regime for any length of time between 1933-1945. • Included in this group are those who were forced to flee their place of residence because of persecution by the Nazis.

4. The Holocaust • The Holocaust is defined as the state-organized, systematic attempt to annihilate all European Jewish communities and physically exterminate all individuals of Jewish descent.

5. Holocaust Survivor Facts and Figures • In 2010, an estimated 127,300 Nazi victims were residing in the US. • Approximately 75% were at least 75 years of age. • In 2015, the total number of living Survivors was estimated at 98,400. • In 2020, the estimated number of living Survivors will be 67,100 and all will be at least 75 years old. • In 2025, the number of living Survivors will be 36,800. • By 2030, the number of Survivors still living is estimated at 15,800.

6. MJHS Hospice and Palliative Care Grant • MJHS Hospice and Palliative Care in New York City is the heart of the largest Holocaust Survivor population in the United States. • Awarded a two-year Holocaust Survivor grant aimed at better understanding the attitudes of Survivors around advance care planning and access to end-of-life care. • The goal was and remains to increase access and improve best practice when caring for Survivors and their families.

7. Survey and Findings • Explore and understand Holocaust Survivor attitudes about accessing end-of-life care, advance care planning, and advance directives • Four sample populations – minimum of 50 subjects in each • Holocaust Survivors, Non-Holocaust Survivors, Second Generation Holocaust Survivors, andSecond Generation Non-Holocaust Survivors • No parent/child relationships between first and second generation subjects

8. Impetus for Conducting Survey • We know from experience that Holocaust Survivors can be challenging clients to serve • Survivors are often suspicious of strangers, non-adherent with treatment plans, extremely anxious, and sometimes demanding • Lack of intergenerational communication around healthcare decision making • Frustration on part of professionals when caring for Holocaust Survivors • Frustrations and challenges with Second Generation caregivers • Resistance to hospice care

9. Survey Findings • 100% of Holocaust Survivors reported fear of being burden to their children • 2nd Gen was asked if parents discussed healthcare wishes – 74% said NO • Only 8% of 2nd Generation initiated conversations with their parents about HCP • 2% non-Holocaust Survivors reported fear of being a burden • 2nd Gen non-Survivors asked if parents discussed healthcare wishes – 85% said YES • 77% non-Hol. 2nd Gen initiated conversations with parents about HCP

10. Survey Findings • 25% of Survivors somewhat discussed their wishes were they to become ill • 3.6% Survivors fully discussed their wishes • 0% of Holocaust Survivors reported fear of dying • 78% Survivors fear loss of independence • 78% Survivors rely on their children to make healthcare decisions for them

11. Survey Findings • 85% non-Survivors discussed their wishes • 26% non-Survivors fully discussed • 41% non-Survivors reported fear of dying • 15% non-Survivors fear losing independence • 81% non-Survivors rely on doctors to make healthcare decisions

12. Understanding the Findings • Challenges • Holocaust Survivors can be challenging patients • Second Generation Survivors can be challenging as well • Family dynamics between First and Second Generation Survivors are often complicated • PTSD and depression are two issues that complicate caregiving and delivery of care (Feldman & Periyakoil, 2006) • Overcoming Challenges • Educate healthcare professionals and caregivers about Holocaust experience and impact of PTSD • Use third party facilitators to open difficult conversations

13. Important Outcomes of Survey • Survivors don’t talk about their healthcare wishes with their children, yet rely heavily on them for decision making • Most Survivors do not have advance directives in place • Children of Survivors do not want to upset their parents, so they avoid certain topics of conversation • Caregiver burden is enormous • Children of Survivors are often overly protective of their parents

14. General Survey Outcomes • Survivors reported that talking about healthcare wishes is not difficult for them • Learning opportunity – discussion about healthcare wishes could be facilitated by third parties • Benefit - Having a plan in place alleviates the fear of losing control because the Survivor can make his/her wishes known, and the child caregiver can feel comforted by carrying out those wishes without guilt

15. Effects of Traumatization • Studies suggest that there is great variability in individual responses to traumatic stress (Felsen, 2012; Feldman & Periyakoil, 2006) • Not all survivors develop PTSD • Strong association between trauma exposure and physical and psychiatric symptoms observed in victimized populations

16. Effects of Traumatization • Exposure to trauma can lead to symptoms of: • PTSD • Depression • Panic disorder • Generalized anxiety disorder • Substance abuse • PTSD – mental disorder characterized by extreme difficulty adjusting to a trauma

17. PTSD • Defined by diagnostic and statistical manual of mental disorders (DSM-IV) as an anxiety disorder that arises from ‘exposure to a traumatic event that involved actual or threatened death or serious injury’ (American Psychiatric Association, 1994)

18. PTSD (Cont’d) • PTSD Clusters of Symptoms • Re-experiencing • Avoidance • Numbing • Hyperarousal • Additionally, issues such as depression, general anxiety, substance abuse, distrust in authority, and survivor guilt are common comorbidities with PTSD

19. Reactions of Health Care Providers • Sadistic acts demonstrative of evil and perpetrated against innocent people elicit reactions of disgust and disbelief • First person accounts and historical documentation attest to an undeniable truth too difficult to bear and may lead to conscious or unconscious denial by clinicians: (Felsen, 2012) • Superiority - Believing we have nothing in common with perpetrators of such evil • Yet, many Nazis were highly educated physicians and nurses

20. Reactions of Health Care Providers (cont’d) • Irrelevance – Clinicians may rationalize that such atrocities could not be committed today and are irrelevant. • Yet, we have recent examples in the US (Tuskegee), Rwanda, Cambodia Killing Fields, Bosnia, Iraq, Syria. • Judging – Can occur when a clinician (consciously or unconsciously) finds reasons to blame the victims as a method of reconciling a disturbing reality. • Can lead to the clinician’s desire to avoid or reject the Survivor patient.

21. Reactions of Health Care Providers (cont’d) • Doubling (coined by Robert Jay Lifton, Nazi Doctors, 2000) – The process that allowed Nazi doctors to perform diabolical acts on people in concentration camps without feeling emotional distress and continue to see themselves as humane and civilized physicians and yet: • Doctors and nurses selected who would live or die • Doctors murdered those considered to be physically or mentally handicapped • Doctors performed human medical experiments that either killed or permanently maimed and disabled their subjects

22. Reactions of Health Care Providers (cont’d) • Medical Doubling (Lifton, 2000) – • Medical professionals may be more susceptible to doubling than others in order to be able to tolerate the repeated encounter with death and suffering. • Medical professionals must guard against an adaptive attempt to defend the self from difficult experiences leading to possible desensitization of the patient’s pain and humanity.

23. Recommendations for Health Care Providers • Be cognizant of your own history/experience of personal trauma, so you can remain sensitive to trauma of others. • Maintain professional boundaries, and practice patient-centered care. • Be tolerant of others. See each patient as an individual and whole human being. • Resist desensitization to the pain and suffering of others. Be compassionate and empathic to patients and families. • When learning of a patient’s traumatic experience, listen attentively, and be cognizant of your own verbal/ nonverbal messaging.

24. Conclusion As clinicians, we are bound by an oath to do no harm. Over years of practice, we will encounter many people who are different from us, and who may have experienced unthinkable traumas that have scarred them for life. We must learn to resist tendencies that can lead well-intentioned professionals to behave inhumanely. Left unchecked, all of us are capable of committing atrocities. We are duty-bound to treat our patients as no less human than ourselves.

25. Bibliography • American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disease, Fourth Edition. Washington, DC.Feldman, D. B., & Periyakoil, V. S. (2006). Posttraumatic stress disorder at the end of life. Journal of Palliative Medicine, 9(1), 213-218. doi:10.1089/jpm.2006.9.213. • Felsen, I. (2012). Trauma, aging and implications for treatment: When Holocaust survivors need our help most. New York [PowerPoint slides]. • Lifton, R. J. (2000). The Nazi doctors: Medical killing and the psychology of genocide. Washington DC: Library of Congress Cataloging; The Perseus Book Group.