Transforming Death into Healing: Palliative Care at the End of Life

1. Transforming Death intoHealing at the End of Life A. Reed Thompson, M.D. Associate Professor Palliative Care Service University of Arkansas for Medical Sciences Central Arkansas Veterans Healthcare System Al Henager, BCC, BCCC Staff Chaplain Coordinator of Palliative Care University of Arkansas for Medical Sciences

2. Likelihood of dying suddenly? 10% of Americans die suddenly Which means 90% die over a longer period of time

3. Healing at the End of Life • Premise • Just because a person is dying • It does not mean that there is nothing we can do • Actually, there is something we can do

4. Healing at the End of Life • Stopping cure-focused treatment does not stop all treatment, there are still many things that we should do for the patient. • People need a continuing relationship with their healthcare providers more than ever during a life-limiting illness.

5. Healing at the End of Life • The Elephant in the Room • Often, people avoid talking about the obvious fact that the patient is dying

6. Healing at the End of Life • Discussing dying • Helping people to resolve issues, say goodbye, achieve wishes, etc. • Addressing physical, social, spiritual, and existential issues • Can and DOES bring Healing at the End of Life

7. Palliative CareDefinition Palliative Careis a broad term referring to an interdisciplinary team approach to comprehensive care that focuses on alleviating and preventing suffering while enhancing the quality of life of patients and their families facing a serious, complex, chronic, or life-threatening illness. It is not limited to persons only at the end of life.

8. HospiceDefinition Hospice is a interdisciplinary program of palliative and supportive services provided both in the home and in institutional settings for persons with weeks or months to live so that they may live as fully and as comfortably as possible.

9. “Modern Medicine” Hospice Palliative Care vs. Hospice Palliative Care

10. Hospice • Hospice is the “end piece” of Palliative Care. • Hospice is the most common means of providing Palliative Care at the End of Life.

11. Definition Healed • Cured or restored to health • Made hale, sound, or whole • Restored to original purity Webster’s New Collegiate Dictionary There are many types of healing • Physical • Emotional • Spiritual

12. Healing at EOL Multiple domains • Medical • Social • Spiritual • Existential

13. Medical Domain • Physician supervises care • Nurses assess and implement physicians’ recommendations

14. Pain 89% Weight loss 58% Anorexia 55% Dyspnea 41% Constipation 40% Fatigue 40% Weakness 36% Nausea 32% J Palliative Care, 7:23-9; 1991 Depression 31% Insomnia 28% Cough 28% Vomiting 23% Dizziness 16% Confusion 11% Bloating 11% Edema 11% Symptoms at EOL – Medical

15. Social Domain • Setting/Venues • Advance directives • Money • Services/Advocacy • Counseling patient/family

16. Spiritual Domain • Life review • Spiritual screening tools • FICA • Faith • Importance • Community • Address this in care

17. FICA • FICA Source: Christina Puchalski, M. D. • Pulchalski, C. and D. B. Larson. “Developing curricula in spirituality and medicine.” Journal of Academic Medicine 1998; 73: 970-4.

18. FICA • F – Faith • Broad questions: • “What do you believe in that gives meaning to your life?” • “Do you consider yourself to be a religious or spiritual person?” • “What is your faith or belief?” • Both “spiritual” & “religious” is used • Some may be comfortable with one • Some may be offended by the other • A “Yes” should prompt a discussion of what that means to them

19. FICA • I – Importance • Questions: • “How important is your faith (or beliefs) to you?” • “How is it important to you?” • “What is your faith or belief?” • Being “spiritual” & “religious” means little • Example: “I am Catholic and my faith important.” • “However, I have not been to Mass for 10 years.” • “I go to Mass daily, except when I am too sick.”

20. FICA • C – Community • Questions: • “Are you a part of a religious or spiritual community?” • “Is there a group of people you really love and who give you support?” • “How is this community of support to you?” • Communities such as churches, temples, synagogues or masjids can serve as a strong support system for some patients. • For others family and friends are their major support systems.

21. FICA • A – Address in Care • Questions: • “How would you like me, your healthcare provider, to address this in your healthcare?” • “How might these things apply to your current health situation?” • “How can we assist in your spiritual care?” • Communities such as churches, temples, synagogues or masjids can serve as a strong support system for some patients. • For others family and friends are their major support systems.

22. Symptoms at EOL – Spiritual/Psychosocial • Withdrawal from surroundings • Decreased interest in food & water • Decreased socialization • Vision-like experiences • Unusual, out-of-character communications

23. Existential Domain Finding meaning in the suffering • Open-ended questions • What are the most important things in your life right now? • What does all this mean to you? • Listening • Presence

24. Jungian Mind Model Objective, Analytical, Linear, left brain Ego driven Medical Surface Deep Spiritual Subjective, intuitive, Unconscious driven Serpentine, Right brain

25. The Chaplain’s Approach • Be Pastoral • Be present • Have an open agenda & be sensitive to resistance • Listen • Ask Open Ended Questions • What does the doctor say? • What is your understanding of your disease? • What is your understanding of how the future of your disease looks? • What is your understanding of what will happen next? • What do you hope will happen from here? • Let them tell you!

26. Documentation • Chart the conversation • What is patient/family’s understanding of the disease? • What is patient/family’s understanding of prognosis? • What is patient/family’s desires, hopes, wishes? • What does patient/family’s need to do? • If appropriate, suggest a Palliative Care Consult or family conference

27. Suggesting a Palliative Care Consult or Family Conference • Be sure it is appropriate • The patient is nearing the end of life • And/or patient/family desires comfort care • And/or patient/family express uncontrolled or difficult to manage symptoms • When goals of care have changed

28. Suggesting a Palliative Care Consult • Remember, you should suggest a consult or family conference • Chart the conversation • At the end of the note, write something like: “Given that the patient/family’s understanding is that the patient is nearing the end of life, and given that they desire comfort care, would a Palliative Care Consult [or family conference] be helpful to you in this situation?”

29. Suggesting a Family Conference • Remember, you should suggest a family meeting • Work with the team • Case manager • Social worker • Nurse • Physician/attending medical team • A family meeting is a “shot across the bow” “Given that the patient/family seem confused about goals of care, would a family meeting be helpful in this situation?”

30. End of Life Terminology • DNR – Do Not Resuscitate • DNI – Do Not Intubate • Chem Code – Use of Chemical Resuscitation Only • Comfort Care – A category of care where aggressive/curative treatments are no longer being sought, and the goals of care have changed to comfort measures • Advance Directives

31. Advance Directives • Living Will • An advance statement about what the patient does or does not want done under certain circumstances • Terminally ill • Permanently unconscious • Cannot speak for one’s self • Durable Power of Attorney for Health Care • If a person cannot make health care decisions for self, designates a person to do so for patient (varies from state to state) • Health Care Proxy • If a person cannot make end of life decisions for self, the designated person who has legal authority to do so for patient.

32. Health Care Proxy • In Arkansas • Health Care Power of Attorney and Health Care Proxy are different, but can be same person on same document • Must state this specifically • “This document is intended to be a durable power of attorney under A.C.A. 20-13-104 and a declaration and proxy statement under the Rights of the Terminally Ill or Permanently Unconscious Act.” • Default Health Care Proxy (varies from state to state) • Legal Guardian • Parents (if minor) • Spouse • Majority of Adult Children • Parent(s) (if an adult) • Majority of Adult Siblings

33. Advance Directives • Often, the best way to lead into discussion of EOL issues is to ask about Advance Directives • It is helpful to put it the following way: • We may not be to this point now . . . • However, one of the things I ask all of my patients is: • “If something were to happen and you could not speak for yourself in order to give instructions about what treatment you would want, who would you want to speak for you?” • Does that person know that? • Do you have that in writing? • Does that person know your wishes? • Are your wishes written down? • Would you like help in getting that documented?

34. Advance Directives • Then you might ask about DNR • It is helpful to ask in this way: • Again we hope we don’t get to this point, but . . . • Let me ask you. . . • If your heart were to suddenly stop beating, what would you want done?

35. Pastoral Issues • Life review • Spiritual/pastoral assessment • AIO • Living Water • Spirit • Rush 7 X 7 Model • Sacraments/rituals

36. Pastoral Issues • Issues of Theodicy • Where is God in this? • What is the meaning of my suffering? • Unfinished Business • Conflicted relationships • Issues of reconciliation • Issues of forgiveness • Practical Issues • Planning of funeral • Making will • Advance Directives

37. Pastoral Issues • Once EOL is acknowledged • Way Is Clear to Deal with Unfinished Business & Practical Issues • Often, it is helpful to ask: • Are there things you would like to see happen before you die? • What things would you like to accomplish in the time you have left?

38. Healing at the End of LifeThe Chaplain’s Role What does it mean to you? What is your role? Questions? Comments?