Palliative Care Consultation and LVAD selection, the Social Work Role.

Transcription

1 Palliative Care Consultation and LVAD selection, the Social Work Role. Hospice and Palliative Care Association of New York March 2017 Stuart Kaufer, LMSW, Maimonides Medical Center

2 Save the Date

3 Universality

4 Fear of death Although people today have the same kind of unconscious thoughts and fantasies about death that other persons had years ago, our society has changed and has become increasingly a death-denying society. We live today in the illusion that since we have mastered so many things, we shall be able to master death too. (Kubler-Ross, 1978)

5 WHO PC Definition provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patients illness and in their own bereavement;

6 WHO PC Definition uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life. (

7 Illness Trajectory Illness trajectory is a framework to examine any chronic illness. It is based on the idea that all chronic illnesses share common characteristics and events (Corbin & Strauss, 1992). The majority of our work as Social Workers in Palliative and End of Life Care is the result of chronic illness.

8 Components of Trajectory Phase Definition Management Pretrajectory Prior to onset Prevention Trajectory Onset Symptoms/Work up/dx Initiate a plan of care Stable Illness is managed Maintain everyday life Unstable Symptoms worsen, illness flares Add necessary supports/temp/permane nt Acute Illness complication Return to pre acute life

9 Components of Trajectory Phase Definition Management Crisis Life threatening emergency Support through crisis Comeback Return to everyday life w some limits from illness Change in necessary supports Downward Rapid physical decline Adaptation Dying Final days Pt and family support

10 Heart Failure Advanced Heart Failure 6-25 % of pt population have advanced HF. stage at which severe symptoms are present despite medical optimization Therapies available: Devices/Transplantation Yancy CW, Jessup M, Butler J, et al. ACCF/AHA 3. Guideline for the Management of Heart Failure A Report of the American College of Cardiology Foundation/American Heart Association Taskforce 4. on Practice Guidelines. Circulation. 2013;128:e

11 Heart Failure Compared to patients in the advanced stages of cancer, HF patients have an increased burden of physical symptoms, higher depression scores, and lower, spiritual well-being. Bekelman DB, Rumsfeld J, Havranek E. Symptom Burden, Depression, and Spiritual Well-Being: A Comparison of Heart Failure and Advanced Cancer Patients. J Gen Intern Med. 2009;24(5):592 8.

12 Destination v Transplant Destination therapy refers to LVAD that patient will live with the rest of their life. Bridge to transplant, refers to LVAD implant that will keep patient alive until a heart for transplant becomes available. Medical & social factors determine who gets what.

13 Components of Assessment Physical, Functional Financial Social Emotional/psychological Spiritual (Monroe, 1993; Zabora & Loscalzo, 1998).

14 mpact what is it The modified Psychosocial Assessment of Candidates for Transplantation (mpact) is a revised version of the Psychosocial Assessment of Candidates for Transplant. Revised to more closely reflect LVAD outcomes Maltby MC, Flattery M, Burns B, et al. Psychosocial assessment of candidates and risk classification of patients considered for durable mechanical circulatory support. J Heart Lung Transplant. 2014;S D14]:

15 mpact measures Social support including stability/availability Psychological health/psychopathology/personality Lifestyle factors Capacity to understand care requirements

16 What s missing Views of dependence on technology Specific documentation of advance directives Person/family centered view of quality of life

17 Ask, Tell, Ask Start the conversation utilizing the ask, tell, ask format. ASK: What do they understand, how they think they are doing, what they would like to know. How much do they want to be involved in decision making? TELL: give the family information they want and need to make decisions. ASK: what they understood, what are their questions?

18 Ask, Tell, Ask (2) Set goals using the ATA format. What is achievable is not necessarily what they patient may prefer. Then offer options congruent with their values. Goodlin SJ, Quill TE, Arnold RM. Communication and Decision Making About Prognosis in Heart Failure Care. J Cardiac Fail. 2008;14:

19 Specific Questions Issues to plan for a destination LVAD Would you want your pump turned off if you experienced the following: Disabling Stroke Incurable Infection Inevitable death from another cause (e.g. cancer)

20 Symptom Management Heart failure is associated with: Dyspnea Pain Fatigue (at times disabling)

21 SW & Pain Mgmt Pain is multifaceted and consists of physical, emotional, cognitive, social, behavioral, and spiritual components. The various components are interrelated and reciprocal in their effects, with each aspect playing a role in the total experience of pain (Otis-Green, Sherman, Perez, & Baird, 2002).

22 Pain assessment tools

23 Pain assessment tools

24 Summary There is within each of us a potential for goodness beyond our imagining, for giving which seeks no reward; for listening without judgment; for loving unconditionally. (Kubler-Ross, 1997)