1. Spiritual Issues in the Care of Dying Patients Daniel P. Sulmasy, MD, PhD Department of Medicine & Divinity School The University of Chicago The views presented herein should not be construed as necessarily representing those of the U.S. Presidential Commission for the Study of Bioethical Issues

2. A Case: Mr. W 54 yo man h/o bronchitis, HTN, nephrolithiasis 3 mos before admission: back pain MRI – T7 lytic lesion Bx = adenoCA w/u – pancreatic mass, lung nodules T7 corporectomy + fusion Post-op dyspnea  malignant effusion 80% O 2 by FM

3. Palliative Care Consult DNR/DNI orders BiPap, chest tube, diuretics, antibiotics Stabilized on oxygen by vapotherm Possible courses of action: –Hospice –Chemo (but only after rehab and stabilization) But wanted “all options” & believed God would miraculously cure him Therefore, hospice was ruled out Attention to symptoms, maximizing chances for chemo

4. Mr W’s Perspective “I believe in the God of the Bible and that he is the God of miracles. When I say that I mean that I could, 5 minutes from now, stand up completely healed and walk out of here, because I believe that He can do instantaneous healing. But, I also know that it's no less a miracle if 3, 6, or 9 months from now, I realize that everything is gone and I’m … fully functional.…I don't know if they've incorporated my beliefs into planning for my future...

5. Mr. W, cont’d “A couple of days ago when the palliative care team was here, the social worker heard me saying things about living for many more years, and she came in the next day and told me that things had changed. … She told me that she had been looking for hospice care for me, which is just to take care of me for the last 6 months of my life. She said that since I was planning on living longer than 6 months, she needed to look for something else for me. So, my beliefs did affect her outlook on things.”

6. Dr. D’s Perspective “I assumed that he wasn’t giving me the details of what he believed in. He wasn’t necessarily comfortable talking about it…. I had deep conversations with him, but we never spoke explicitly about what we believed in, because I didn’t feel that opening with him. But, I did talk about issues in a more general fashion…. You tread the line between being respectful of others’ wishes to share them with you and probing to a certain extent. I wonder why I didn’t ask this patient those questions.”

7. Rev. S’s Perspective “When I look at a patient, in this case a dying patient, I really look at the primary core spiritual need that they are presenting to me. Is it a quest for meaning to try to determine what their life meant or what their faith means? Or, are they presenting a need for affirmation, support, and community, a kind of valuing from the people around them? Or, are they looking for reconciliation in relationships—they're presenting broken relationships with people that they can't say goodbye to because they can't let go in good conscience and they are carrying resentment about the past.”

8. Caveats Broad overview of spiritual issues –Concentrate on one Case requires concentration on Christianity –Brief mention of other religions –Many issues cut across religions and non- religious spiritual practices

9. Text & Subtext Sounds like a crisp clean clear case “Presentation” does not address deeper personal and spiritual issues Dr. D hesitates to ask

10. Typical Medical Responses Ignore these issues “Problematize” them –Disposition –Denial –“Code status” –“Futility” Spirituality is beyond these categories

11. Spirituality, Health, & Health Care Part of HRQoL McGill – major driver at EOL Data – major driver of dissatisfaction = »Lack of attention to spiritual needs Religious beliefs & medical ethics –Support for PAS –Use of feeding tubes Religious practices tied to health –Diet, risky behaviors –Outcomes from psychiatric diseases –Religious service participation  longer life

12. Spirituality One’s relationship with the transcendent questions that confront one as a human being and how one relates to these questions.

13. Religion A set of texts, practices, and beliefs about the transcendent, shared by a particular community.

14. Illness: a disturbance in relationships Ancient peoples Western, scientific medicine Beyond the individual body...

15. Relationships that illness disrupts Family and work The transcendent –Meaning –Value –Relationship

16. Healing The restoration of right relationship The milieu interior The divine millieu

17. Physicians are less religious than patients 83 % of Americans believe in God –But only 76 % of physicians 73% of Americans “try hard to carry their religious beliefs into all aspects of their lives” –But only 58% of physicians Curlin et al J Gen Intern Med 2005;20:629-34

18. Patients want more spiritual attention from health care professionals 52-94% want their physicians to inquire about their spiritual needs –Yet, rarely happens Even 45% of non-religious patients say yes 48% in one survey want their physicians to pray with them

19. Patients rarely experience such attention Appropriateness of physician inquiring about spiritual needs Has staff inquired about spiritual needs? Has physician inquired about spiritual needs? 58% 6% 1% Astrow, et al. J Clin Oncol 2007:25:5753-7

20. Single strongest predictor of dissatisfaction with care and low ratings of quality of care “My spiritual needs have not been met” –Oncology outpatients –Multivariate models controlling for life-satisfaction –β = -.162; p =.006 Astrow, et al. J Clin Oncol 2007:25:5753-7 Univ. of Chicago Hospitalist Study –Patients who discussed R/S concerns with hospital staff were more likely to be extremely satisfied with their medical care (74% vs. 63%, OR 1.7, 95%CI = 1.4-2.0) –regardless of whether or not they had wanted such discussion to occur Williams et al. J Gen Intern Med 2011 (DOI: 10.1007/s11606-011-1781-y)

21. Biopsychosocial History Present Spiritual and Biopsychosocial State Modified Spiritual State Modified Biopsychosocial State DEATHDEATH Spiritual Intervention Spiritual History Quality of Life The biopsychosocial-spiritual model in practice & research

22. The Major Spiritual Questions Meaning –Hope and despair Value –Dignity and indignity Relationship –Reconciliation and alienation

23. How? Meaning: –“What do you make of all this?” –“Is there a hope you can see beyond cure or even control of your disease?” –“Is hope a spiritual word for you?”

24. How? Value: –“Can you hold on to your own sense of dignity in the midst of this?” –“Seems like a lot of people really care about you—as a person. Is that true?” –“Are there any spiritual or religious resources upon which you can draw to help see you through this?”

25. How? Relationship –“How are things with your family and friends?” –“Is there anyone to whom you need to say ‘I love you’ or ‘I’m sorry’?” –(For a religious patient) “How are things between you and God?”

26. An exit strategy “I can’t do everything—that’s why we work as a team. I think we’ve covered some very important ground here, but there’s so much more to talk about. If it’s okay with you I’m going to send Rev S to see you later today. Also, I’d like to tell her a little about what you’ve just shared with me so she can be better prepared. Would that be okay?”

27. Why do clinicians hesitate? Trouble facing the limits of medicine –“It’s an awful thing to come to the patient with your bag of tricks empty.” Fear of invading privacy; offending –“You tread the line between being respectful of others’ wishes to share them with you and probing to a certain extent.”

28. Why MDs? Patients want them to –Surveys Ethics –a commitment to treat patients as whole persons No one else may “discover” the problem –e.g., negative religious coping Identify resources for patient –chaplains, clergy, congregations

29. Referral Pastoral Care—expertise Team Model Role confusion for patients

30. Clinical clues Amulet, Q’ran, Bible, Shabbat candles An open-ended response

31. Spiritual History FICA –Faith & Beliefs –Importance –Community –Act or address “What role does spirituality or religion lay in your life?”

32. Inpatient setting “Stranger medicine” Sit down “How are you doing with all this?”

33. Selected aspects specific religious beliefs about death & dying Buddhism: the opportunity to chant or to hear others chanting if unable Catholicism: the Sacrament of the Sick (requires a priest); viaticum (communion) Hinduism: the use of mala (prayer beads); strong preference to die at home Islam: opportunity to die facing Mecca, surrounded by loved ones Judaism: opportunity to pray vidui (confessional prayer) and the Shema

34. Ethics Boundaries –No proselytizing –No prayer with consent Justification –Intimacy & power imbalance –Vulnerability & respect for autonomy Safest bet: –start gingerly & follow patient’s lead

35. Clinician not religious, Pt is religious Moral obligation of MD to attend to patient’s spiritual and religious needs Respect Referral “I do not share your faith, but I understand how important Buddhism is to you, especially at this time, as a source of hope, value, and strength. How can I help you live well as a Buddhist for as much time as remains for you?”

36. The spiritual needs of non-religious persons Easily overlooked More difficult to address without established practices, texts, etc. But just as important

37. Miracles: a special consideration When patients or families pray for (and expect) miracles that physicians deem, to a reasonable degree of medical certitude, impossible

38. Defensible Judgments of Futility Biomedical standard –not subjective standard “to a reasonable degree of medical certitude” An objective judgment

39. Denial A common defense mechanism A diagnosable syndrome Judgment –a helpful coping mechanism –a dysfunctional state

40. The Double-Bind Disrespectful to say never can distinguish denial from belief in miracles (assumes religious belief is equivalent to a delusion) Yet, very difficult to question another’s religious beliefs, especially if the patient is not of one’s own religion

41. What to do: Listen attentively –Interpreting as abandonment –Expressing distrust –True psychiatric distress: guilt, ambivalence, stress, denial Do not try to “re-frame” Work with chaplains, clergy, psychiatrists

42. Listening to Mr. W Not in denial Accepted DNR/DNI Accepted the idea that God might not answer his prayers as he would like –“I always include in my prayers, ‘God, not as I would have it, but as you would have it.’ I don’t think that’s a cop-out.”

43. Hospice and belief in miracles Nothing in the federal regulations says that patients who believe in miracles are ineligible for the hospice benefit.

44. Hospice and miracles MDs need to believe prognosis < 6 mos. PT can believe he will live 100 more years Can enroll saying, –Best program for control of sx –Not able to take chemo now –If you miraculously improve, you can dis- enroll and we’ll start the chemo –So keep on prayin’

45. Physicians, prayer & patients Not ushering clergy out of the room Not leaving when clergy arrive Not leaving as patient prays Intercessory prayers or “laying on of hands” –Requires careful consent

46. While spiritual issues arise in the settings of acute and chronic illness as well, spiritual issues assume a special salience in care at the end of life. The care of Mr W illustrates how the spiritual needs of patients are inextricably bound up with the “traditional” duties of physicians. Attending to these needs is integral to the job of being a good physician.