Palliative Care for Holocaust Survivors Difficult Conversations

1. Palliative Care for Holocaust SurvivorsDifficult Conversations

2. Difficult Conversations

3. Learning Objectives Learn How To: Open conversations about end of life care options Define and distinguish between Hospice and Palliative Care Keep the conversation directed Interactive learning through case study and role plays These are difficult conversations to have with clients you�ve known for years. Holocaust Survivors are good at deflecting conversation to avoid discussions they are unwilling to have.These are difficult conversations to have with clients you�ve known for years. Holocaust Survivors are good at deflecting conversation to avoid discussions they are unwilling to have.

4. What do we mean? Conversations about: Advance Directives Do Not Resuscitate Health Care Proxy Living Will Discussions about palliative care or hospice

5. Reasons to address end of life issues Special needs of the Holocaust survivor make end of life discussions more important. Informed Consent Recent legislation � Palliative Care Information Act

6. Barriers to talking about end of life options Worries that the patient may lose hope. �Little hard evidence exists to support this position; in fact, it is more likely that misguided evasion or frank dishonesty may add considerably to a patient�s distress and prolong the necessary adjustment period.� (Fallowfield)

7. �It is not clear that health care providers can either steal or instill hope. However, they can provide an empathic reflective presence that will help patients draw strength from their existing resources.� (Tulsky) Many Holocaust Survivors, by virtue of survival, have deep faith. There is a strong belief in that G-d steers all events and leads us to important people in our lives. Physicians and caregivers are also messengers � and they can be the vehicle to help patients draw strength from their existing resources. Many Holocaust Survivors, by virtue of survival, have deep faith. There is a strong belief in that G-d steers all events and leads us to important people in our lives. Physicians and caregivers are also messengers � and they can be the vehicle to help patients draw strength from their existing resources.

8. Other barriers Emotional vulnerability of the patient and family. Our own feelings of attachment to the patient and family Our feelings about our own mortality

9. �A Legacy of Silence� Eva Metzger Brown talks about a �legacy of silence� that occurs in Holocaust Survivors and their families. This can be manifested in a heightened sensitivity to anxiety, and may be �a primary coping mechanism.� Many Survivors, as a means of coping, avoid discussions that bring pain and trigger memories that are too difficult to discuss. Some of these coping mechanisms influence behaviors of the Second Generation as well.Many Survivors, as a means of coping, avoid discussions that bring pain and trigger memories that are too difficult to discuss. Some of these coping mechanisms influence behaviors of the Second Generation as well.

10. When to initiate discussions of end of life options Early in the disease trajectory if possible When quality of life is compromised When the patient is experiencing uncontrolled symptoms After diagnosis with a life-threatening illness Discuss �how� you the professional we are speaking to would know about the illness.Discuss �how� you the professional we are speaking to would know about the illness.

11. Recommendations Ask what the patient understands about their illness, or what the doctor has told them. Assess the patient�s emotional functioning Allow the patient to maintain control, and let you know how much discussion they can tolerate.

12. Recommendations (continued) Have multiple shorter conversations. Try again if the first response is not receptive. Maintain a patient centered approach Respect denial as a coping mechanism

13. Advantages of receiving palliative or hospice care Hospice is a comprehensive benefit that offers a basket of services all covered by either Medicare/Medicaid Minimize unnecessary and futile interventions and hospitalizations Maintain quality of life for as long as possible Expertise in pain and symptom management. More consistent treatment team Recent study of possible effects of receiving palliative care Palliative care can be a �bridge� to hospice

14. �Honest communication is surely an ethical imperative for the truly caring clinician. Patients need to plan and make decisions about the place of their death, put their affairs in order, say goodbyes or forgive old adversaries, and be protected from embarking on futile therapies.� (Fallowfield)

15. �To continue the work requires a belief that the Holocaust survivor can face death again �with integrity, with hope, and yes, even with peace.� (Luban and Katz) And on their own terms And on their own terms

16. Community-Based Palliative CareandHospice Services

17. Palliative Care National Consensus Definition of Palliative Care Palliative care seeks to prevent and relieve suffering and ensure the highest possible quality of life regardless of age of the individual, stage of disease or need for other therapies.

18. Palliative Care Therapeutic Model Palliative Care is intended to: Reduce the burden of illness Maintain quality of life Minimize suffering Ensure that care is guided by goals consistent with: Medical realities Values and preferences of the patient

19. MJHS Palliative Care Consultation Services Comprehensive, Specialist Palliative Care Assessments Collaboration with other agencies Pain and symptom treatment plans Goals of care Family meetings Prescriptive writing Compatible with CHHA and Long Term Care Programs

20. Eligibility for Palliative Care Services Advanced life-limiting illness One or more of the following: Symptoms that are difficult to control. Examples: Pain Nausea Dyspnea Depression Fatigue Multiple recent hospitalizations Multiple Physicians and need for �Goals of Care� discussion Weight loss of more than 10% in past year

21. Screening for Palliative Care Inclusion Criteria Life-limiting illness with evidence of distressing symptoms Patient�s medical provider acceptance Patient/family consent to care Exclusion Criteria Management of persistent pain in absence of life-limiting illness Counseling needs in absence of life-limiting illness Lack of active symptoms Psychiatric issues in the absence of life-limiting illness

22. Palliative Care Consultation Options One-time Consultations Comprehensive assessment by Palliative Care Physician or NP Recommendations to patient�s PCP and patient/family May include assessment to determine hospice eligibility Ongoing Palliative Care Consultation Visits Initial Consultation with follow-up visits for up to a 60-day period Evaluation for recertification into a 2nd 60-day period if reason for consult remains unresolved Visits and case coordination by members of interdisciplinary team Development of patient/family�s goals of care Treatment of patient�s symptoms (including prescriptive writing) Psychosocial counseling Assistance with obtaining additional social services

23. Hospice Program The continuous feedback from our National Hospice and Palliative Care Organization (NHPCO) Family Satisfaction Survey is �I wish we had known about Hospice earlier�

24. When Hospice Should Be Introduced

25. When is Hospice Indicated? Prognostication may be difficult, depending on the patient and the disease. A very good indicator for physicians would be the answer to the following question. Would you be surprised if your patient died within the year? If your answer to the question is �no,� then a referral for Hospice is indicated. It is an approximate 6 months prognosis should the patient�s disease run its normal course. Patient is not informed of the 6-month prognosis criteria unless the patient asks. The 2nd eligibility criterion is that the patient would no longer be seeking curative interventions. * Clinical Guidelines are included in presentation folders.

26. General Indicators of End of Life Disease Frequent UTI or respiratory infections Multiple hospital or emergency room visits Unexplained weight loss > 10% Loss of appetite; withdrawal from environment Unhealing decubiti Hgb<10; Albumin<2.5 Unexplained or refractory temps Multi-organ system failure

27. Cancer/Malignancy Patient no longer receiving curative treatment �Evidence of end stage or metastatic disease �Recent lab/diagnostic studies support evidence of disease �Confirmed diagnosis by pathology or radiology End Stage Pulmonary Disease �� Severe dyspnea at rest ��Oxygen dependent ��FEV less than 30% of predicted ��Significant decline in the last three months ��Hypoxemia: p02<55mmHg/02Sat<88% or Hypercapnia: pCO2 greater than 50mmHg

28. End Stage Cerebrovascular Disease (CVA) Poor nutritional status Chair or bed bound Chronic: post stroke dementia; Acute: persistent vegetative state � End Stage Alzheimer�s Ability to speak six word or less Cannot eat, walk or sit up without assistance Marked decrease in intake Urinary and bowel incontinence #7 on the FAST Scale Explain FAST scaleExplain FAST scale

29. End Stage Renal Failure No dialysis related to the Hospice diagnosis. BUN>100; Creatnine>8.0mg/dl; and Creatnine Clearance<10cc/min � End Stage AIDS CD4 Count<25; viral load>100,000 History of successive opportunistic infections Wasting (loss of 33% body mass)

30. End Stage Cardiac Disease Two categories: CHF or Cardiomyopathy Ischemic Heart Disease � ASHD/CAD Dyspnea with minimal exertion needing 02 Optimal tx�ed with diuretics and vasodilators Ejection Fraction of 40% or less. CHF: Fluid overload despite meds CAD: history of angina, arrhythmia, MI Angina syndrome present � even at rest

31. End Stage Liver Disease INR>1.5; PT>5 sec. over control Ascites, recurrent or refractory to tx Hepatorenal Syndrome or Hepatic Encephalopathy � End Stage ALS Dyspnea; 02 at rest; No mechanical vent Severe loss ambulation and normal speech Dysphagia with no tube feed; loss of ADLs

32. What Services MJHS Hospice Offers Hospice Medical Directors RN for case management Medical Social Workers for case management, discharge planning, supportive counseling Music Therapists Pastoral Care Coordinators for spiritual support and counseling Bereavement Services including Art and Soul program Home Health Aides for personalized one on one care Volunteers PT, OT and Speech Therapists Registered Dietician for consultation related to nutrition at end of life Staff that are trained in Jewish Cultural Competency and Holocaust Sensitivity