Advance Care Planning

The following list contains questions to pose to yourself and to those who may have an important role to play in your health and well being if you are facing a life-limiting illness. Please consider each of the sets of questions as an introduction to a difficult topic. We expect that many more questions may arise that are more specific to your individual circumstance. The important thing to understand is that all of these questions lead to choices that may not necessarily have clear answers. It is our hope that by talking about the issues these questions raise, you and those important to you will have the strength of knowing what to expect, what you expect, and what is expected of them. Vaya con dios.

- Dennis S. Pacl, MD, FACP, FAAP, member of TxPEC Board of Directors

QUESTIONS TO ASK YOUR PHYSICIAN

1. Will you explain the burdens of the treatment versus the benefit that the treatment will provide?

2. Will I be able to stay at home and receive treatment?

3. My independence is important to me. How long can I still take care of myself?

4. Will you assure me that you will relieve my pain, yet I’ll still be able to recognize and respond to my loved ones?

5. Will you be able to keep me comfortable at home instead of transferring me to a hospital?

6. What if I don’t recognize my family?

7. Will you honor my wishes?

8. Competence: Are you board certified? How much experience have you had caring for patients who lived and died with this disease? How many patients like me did you follow through to death? How did those deaths go?

9. How will you notify me with results of tests?

10. When should I expect to hear back from you or to see you again?

11. What should I say to let the nurse or receptionist know that I need more time with you?

12. What are the best outcomes that I might reasonably hope for?

13. What are the worst outcomes that I might reasonably have to deal with?

14. How will this illness and treatment affect me? My family?

15. On my prognosis, what is the shortest and longest time that I can expect to live?

16. What symptoms am I likely to have as my disease progresses?

17. What medications should I have at home in case of sudden symptoms?

18. Can hospice help me? Will you tell me when you think hospice is my best option?

19. How do I make it known that I don’t want CPR in case of an emergency?

20. What can I do instead of going to the hospital in an emergency?

21. Do you visit assisted living facilities, nursing homes, or hospitals to take care of patients?

22. Can you assure me that I will never have to endure overwhelming pain, shortness of breath, or other symptoms?

23. Will you use sedation when necessary to relieve intractable symptoms near the end of life?

24. Will you provide continuous, comprehensive, coordinated care?

25. Will you minimize transitions between services, settings, and personnel; when they are necessary, will you make sure they go smoothly?

26. Will you let me and my family know what to expect as the illness worsens – and what is expected of us?

27. Will you describe alternatives for services so that I can understand my choices?

28. Will you address the concerns of the family caregivers? When appropriate, will you make respite, volunteer, and home aide care part of the care plan?

29. Will you treat me as a person, not a disease?

30. Will you respond to my physical, psychological, social, and spiritual needs and the needs of my family? Will you support my family before, during, and after my death?

QUESTIONS TO ASK YOUR CLERGY AND/OR CHAPLAINS

1. Will you help me understand meaning in my life as my life is ending?

2. What is the meaning of this suffering?

3. How do you approach care for people from religious traditions other than you own?

4. If I have fears, doubts of faith, and other concerns, are you able to help me talk about them?

5. Where does my previous religious/spiritual advisor fit in?

QUESTIONS TO ASK YOUR FAMILY

1. What if I reach a point where I don’t recognize you? What will you do?

2. Will you honor my wishes?

3. I don’t want to be a burden. Will you help me rate the relative benefits and burdens of living with the illness and the required treatments?

4. Whom can I choose to speak for me and make decisions when I can no longer make decisions on my own?

5. Who will responsibly follow through on my wishes?

6. Who can use good judgment in difficult situations?

7. What can we do to prevent difficult situations from arising during my final period of life?

QUESTIONS TO ASK YOURSELF

1. If I become terminally or irreversibly ill, how much value do I place on extending my life as opposed to the quality of my life?

2. What do I value most about my life?

3. How do I feel about death and dying?

4. Do I believe life should be preserved as long as possible? At all cost?

5. If not, what conditions would make me decide not to use life-prolonging treatment? Can I imagine temporarily accepting certain medical treatments?

6. How much pain and risk would I be willing to accept if my chances of recovery are good? What if my chances of recovery are poor?

7. Does my age affect my decision to accept or reject treatment?

8. Do financial considerations influence my medical care decisions?

9. What can I do to prevent difficult situations with my family?

List of Resources:

• Resource Manual: The Texas Clergy Project
  Assisting Clergy and Faith Communities in Caring for the Dying
  Texas Partnership for End-of-Life Care, Austin, Texas, Nov. 2001.

• Handbook for Mortals: Guidance for People Facing Serious Illness, Joanne Lynn, MD and Joan Harrold, MD, The Center to Improve Care for the Dying, George Washington University, 1999.

• Making Promises: A Vision of a Better System, Americans for Better Care of the Dying, Washington, DC, 2000.