Ralph Ciampa, Director Pastoral Care Department Hospital of the University of Pennsylvania

1. When the Needs of the Family and the Medical Staff Conflict :Ethical, Cultural and Spiritual DimensionsThe Difficult Provider/Family Relationship RalphCiampa, Director Pastoral Care Department Hospital of the University of Pennsylvania Geisinger Medical Center, Danville, PA

2. Five Assumptions of Pastoral Care • Health is Holistic • Illness Happens to Families • Loss is Pervasive • Emotions Disguise Loss • Loss Does Not Have to Destroy Us Geisinger Medical Center, Danville, PA

3. Many of us exist in a web of family relationships Most of us are quite handy with denial Patients come to us with unique and interesting stories Geisinger Medical Center, Danville, PA

4. Who is the guest here? Geisinger Medical Center, Danville, PA

5. As a provider team,we may be the guests in an 80-year-old story-line unfolding before us Geisinger Medical Center, Danville, PA

6. When the Needs of the Family and the Medical Staff Conflict :Ethical, Cultural and Spiritual DimensionsThe Difficult Provider/Family RelationshipWhat does God have to do with this? Geisinger Medical Center, Danville, PA

7. What does Difficult have to do with it? What does Family have to do with it? What does Culture have to do with it? What does Spirituality have to do with it? What does Ethics have to do with it? Geisinger Medical Center, Danville, PA

8. What does “Difficult” have to do with it? “ One dies just as it comes: one dies a death that belongs to the disease one has (for since one has come to know all diseases, one knows too, that the different lethal terminations belong the diseases and not to the people; and that the sick person has so to speak nothing to do” 1910 The Notebooks of Malte Laurids Brigge, Rilke (1875-1926) Geisinger Medical Center, Danville, PA

9. What does “difficult “ have to do with it? • Annual US Health Care Costs - $1.8 trillion • 15- 20 Percent of GNP devoted to US Health Care • 44 million Americans Uninsured Arnold Relman, MD – lecture 2005 Geisinger Medical Center, Danville, PA

10. What does “difficult “ have to do with it? • 90% of respondents to a Gallup Survey commissioned by the National Hospice Organization in 1996 desired to die at home • The number of people dying in hospitals or other institutions continues to rise - 50% died in institutions in 1949 - 61% in 1958 - 74 % in 1980 - 80% in 1990 Geisinger Medical Center, Danville, PA

11. What does Difficult have to do with it? What does Family have to do with it? What does Culture have to do with it? What does Spirituality have to do with it? What does Ethics have to do with it? Geisinger Medical Center, Danville, PA

12. What does Family have to do with it?Holding onto ourselves as persons through those profound experiences which are now routinely attended by modern medicine • Many of our most difficult treatment questions arise when patients cannot speak for themselves • Families may introduce a “difference in degree” of difficulty around decisions simply by the number of needs, opinions, agendas and dynamics to be dealt with • Families may introduce a ‘difference in kind” to the context of the decisions Geisinger Medical Center, Danville, PA

13. George Burns • “Happiness is a large, close-knit family Geisinger Medical Center, Danville, PA

14. … in another city Geisinger Medical Center, Danville, PA

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16. What does Family have to do with it?Holding onto ourselves as persons through those profound experiences which are not routinely attended by modern medicine • Many of our most difficult treatment questions arise when patients cannot speak for themselves • Families may introduce a “difference in degree” of difficulty around decisions simply by the number of needs, opinions, agendas and dynamics to be dealt with • Families may introduce a ‘difference in kind” to the context of the decision Geisinger Medical Center, Danville, PA

17. Families may introduce a “difference in kind” to the context of the decisions. Patient in the Trauma Bay is : • Beloved Grandmother • Grieving Widow • Lonely Sister • Brave Adventurer Geisinger Medical Center, Danville, PA

18. Families may introduce a “difference in kind” to the context of the decisions. Patient in the Trauma Bay is : • Beloved Grandmother/Grandfather • Grieving Widow/Widower • Lonely Sister/Brother • Brave Adventurer • Lousy Driver • Practiced Denier Geisinger Medical Center, Danville, PA

19. What does Difficult have to do with it? What does Family have to do with it? What does Culture have to do with it? What does Spirituality have to do with it? What does Ethics have to do with it? Geisinger Medical Center, Danville, PA

20. What does Difficult have to do with it? What does Family have to do with it? What does Culture have to do with it? What does Spirituality have to do with it? What does Ethics have to do with it? Geisinger Medical Center, Danville, PA

21. John Ehman Study of Pulmonary Patients at the Hospital of the University of Pennsylvania, (177 surveys from 214 patients approached) 1997 I consider myself to be: Non Religious (1) 6% (2) 7% (3) 36% (4) 29% (5) 22% Very Religious I believe that prayer may sometimes influence recovery from an illness. 90% I believe in life after death. 70% I have spiritual/religious beliefs that would influence my medical decisions if I become gravely ill. Agree or Strongly Agree 45% Geisinger Medical Center, Danville, PA

22. John Ehman Study of Pulmonary Patients at the Hospital of the University of Pennsylvania ( Cont’d) If I become gravely ill then I would like a doctor to ask me whether I have spiritual/religious beliefs that would influence my medical decisions. Strongly disagree – 7% Disagree - 9% Agree – 42% Strongly agree – 24% Geisinger Medical Center, Danville, PA

23. John Ehman Study of Pulmonary Patients at the Hospital of the University of Pennsylvania ( Cont’d) If I become gravely ill then I would strengthen my trust in a doctor if he or she asked me about any spiritual/religious beliefs that would influence my medical decisions. Strongly disagree – 7% Disagree - 10% Agree – 39% Strongly agree – 27% My doctor has already asked me whether I spiritual/religious beliefs that would influence my medical decisions – 15% Yes Geisinger Medical Center, Danville, PA

24. Sammy Davis , Jr. • When an irresistible force such as you • Meets an old immoveable object such as me. • You can bet as sure as you live. • Something gotta give. • Something gotta give. • Something gotta give. Geisinger Medical Center, Danville, PA

25. What does Spiritual have to do with it? • The irresistible urge to control our fate through technology and denial • The immovable object of our mortality Something gotta give • The helpful alternative for providers is to keep focus on attainable goals of treatment and realize the inevitable limits of treatment • The hopeful alternative for families is to seek a spiritual answer to the mystery of our shared finitude and mortality Geisinger Medical Center, Danville, PA

26. M. Scott Peck, M.D., Denial of the Soul: Spiritual and Medical Perspectives on Euthanasia and Mortality, Harmon Books, 1997 Peck defines the soul as “ a God-created, God-nurtured, unique, developable, immoral human spirit.” Representing a Christian viewpoint that not all would share, he continues , “Herein lies, I believe the meaning of life. Why would God not only create us , but continue to nurture us unless, we were developable…I defy you in your imagination to concoct a more ideal environment for human learning than this life on earth. It is a life filled with vicissitudes and existential suffering, but as Benjamin Franklin said, ‘Those things that hurt instruct’. Many have referred to earth as a vale of tears. Keats, however went deeper when he called it ‘the vale of soul-making.” (p.152) Geisinger Medical Center, Danville, PA

27. What does Difficult have to do with it?What does Family have to do with it?What does Culture have to do with it?What does Spirituality have to do with it?What does Ethics have to do with it? Geisinger Medical Center, Danville, PA

28. What does “ethics” have to do with it? • Classic Bioethical dilemmas of competing goods • Communication problems • Concept of personhood • Justice issues Geisinger Medical Center, Danville, PA

29. What does ethics have to do with it?Classic Bioethics Dilemmas • Autonomy • Beneficence • Non-Malfeasance • Justice Beauchamp and Childress Principles Geisinger Medical Center, Danville, PA

30. What does “ethics” have to do with it? Communication problems • The act of labeling patients as “difficult” typically has the effect of locating the problem with the patient -See: MacDonald, M. “Seeing the Cage: Stigma and its Potential to Inform the Concept of the Difficult Patient.” Clinical Nurse Specialist 17,no.6 (Nov 2003) 305-310 • The label of “difficult patient” tends to be well communicated among staff. - See: Carveth, J.A. “ Perceived Patient Deviance and Avoidance by Nurses.” Nursing Research 44,no.3 (May-Jun 1995): 173-178 Geisinger Medical Center, Danville, PA

31. What does “ethics” have to do withit? Concept of Personhood • 20% of us are going to suffer from some cardiac or respiratory failure,with years of worsening symptoms, a few life-threatening episodes, and then eventually die. • 20% of us will get cancer or another rapidly debilitating disease and we will be dead within a year. • 40% of us will suffer from some form of dementia (mostly Alzheimer’s disease or a stroke) and our gradual, unrelenting path toward death will take 8 or 10 or even 20 years, during which we will cease to be the person we were. We will linger on in some new state, depending on the care of others. David Brooks reflecting on Rand Corporation statistics in New York Times Commentary 2005 Geisinger Medical Center, Danville, PA

32. David Brooks continued reflections: “ In a society of individuals, family still matters”. “ Will our moral philosophy catch up with this reality…technology, which was supposed to be liberating, actually creates more dependence. We spend more of our lives while young and old dependent upon others, and we spend more time in between caring for those who depend on us.” Can we moderate our ethic of individualism toward an ethic of family and community that takes account of our inter-dependence? Geisinger Medical Center, Danville, PA

33. What does “ethics” have to do with it? Justice IssuesHealth status of African Americans as Illustrative of Health Disparities Justice Issues • African Americans are twice as likely to have diabetes as whites • Diabetic African Americans have kidney failure four times more often than diabetic whites • About 40% of African Americans have cardiovascular disease, compared with 30% of white men and 24% of white women, and African Americans are 29% more likely to die from cardiovascular disease than whites. • African Americans have the highest prevalence of hypertension – which increases the risk of heart disease and stroke – among all racial and ethnic groups in the U.S. • African Americans have almost twice the risk for a stroke as whites and they are nearly 50% more likely to die from a stroke than whites. Geisinger Medical Center, Danville, PA

34. Health status of African Americans as Illustrative of Health Disparities Justice Issues ( Continued) • African Americans are 23% more likely to die from cancer than whites, and African American men die from prostate cancer at twice the rate of whites. • African American women have a 30% higher death rate from breast cancer than white women. • African Americans are 10 times more likely to die from HIV/AIDS than whites (Washington Post, December 20, 2004) Geisinger Medical Center, Danville, PA

35. What does Difficult have to do with it? • What does Family have to do with it? • What does Culture have to do with it? • What does Spirituality have to do with it? • What does Ethics have to do with it? Geisinger Medical Center, Danville, PA

36. Two Tools to Help us be attentive to these five dimensions of the provider/family relationship: • The intersection of aspects of hospital experience with aspects of our lives which tend to be shaped by culture • Three narratives that shape our experience and our response to illness. Geisinger Medical Center, Danville, PA

37. Authority Gender roles Beliefs Practices Language Age roles Values Dress Community Family Sexuality Shame Food Access Isolation Safety Effectiveness Respect Dignity Control Comfort Finances Information Fairness Alliance Culture Diversity Hospitalization Geisinger Medical Center, Danville, PA

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39. Anne Fadiman, The Spirit Catches You and You Fall Down Farrar, Straus and Giroux,1997 Fadiman quoting Harvard psychiatrist and medical anthropologist, Arthur Kleinman: “If you can’t see that your own culture has its own set of interests,emotions and biases, how can you expect to deal successfully with someone else’s culture.” An excellent resource for sharpening our cultural awareness can be found at the University of Texas at the following address: http://whissl.utmb.edu/WHISSL/index.asp Geisinger Medical Center, Danville, PA

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42. The Renewal of Generosity: Illness, Medicine,and How to Live Arthur W. Frank “ The bodily vulnerability that medicine resists with honorable dedication is part of what humans are; not a contingent and undesired side effect of being human – a wart to be removed – but a part of what it is to be human, warts and all. Thus medicine, in its dedication to the human goal of reducing suffering, always risks rejecting a fundamental aspect of our humanity. Medicine,not in its mistakes but in its noblest intentions, can inadvertently increase suffering. We whose lives are dependent on medicine and whose thinking is thoroughly imbued with medical values (RC Remember, modern medicine can be seen as a “culture” in its own right) risk failing to explore the significance of an idea utterly heretical to medicine: that as a species, and as individuals, we may need to be ill. We fail to console ourselves with the recognition that illness may be necessary to realize all we can become as humans.” (p.9) University of Chicago Press, 2004 Geisinger Medical Center, Danville, PA

43. “ We have to remember where we came from, so that we know who we are” Dorothy Love Jackson Ciampa (1909-2005) Christmas 1999 Geisinger Medical Center, Danville, PA