Spiritual Values and Health Care Ethics:
The role of the church in end-of-life decision

The Eastern Pennsylvania Conference
of the United Methodist Church
Valley Forge Convention Center, June 14, 1996

Introduction: A Question of Values (Rev. Ralph Ciampa) "When do we Stop?" an "end-of-life" role-play Six Perspectives: Principles of Medical Ethics Decision Making (Paul Wolpe, Ph.D.) The Goals and Limits of Medical Care (Horace M. DeLisser, MD) Advanced Directives and Patient Self-Determination (Betty S. Adler, Esquire) Older Adult Choices for Medical Intervention (Linda O'Brien, RN MA) Role of the Clergy (Rev. Ralph Ciampa) Spiritual Values in End-of-Life Care (Rev. James Tallman) "Living Will" Exercise (Barbara Ott, RN, Ph.D., CCRN) Open Forum with presenters (Moderator: Rev. Charles E. Weigel)

Index of Presentations and Supplemenatary Materials [Note: Full transcripts are not yet on-line] SYNOPSIS of the Full Symposium Principles of Medical Ethics Decision Making (Paul Wolpe, Ph.D.) [Synopsis] [Transcript] The Goals and Limits of Medical Care (Horace M. DeLisser, MD) [Synopsis] [Transcript] Advanced Directives and Patient Self-Determination (Betty S. Adler, Esquire) [Synopsis] [Transcript] Older Adult Choices for Medical Intervention (Linda O'Brien, RN MA) [Synopsis] [Transcript] Role of the Clergy (Rev. Ralph Ciampa) [Synopsis] [Transcript] Spiritual Values in End-of-Life Care (Rev. James Tallman) [Transcript] Making Decisions About Your Care and Treatment Your Rights as a Patient in Pennsylvania Living Wills Durable Power of Attorney for Health Care Sample Declaration Values Questionnaire Medical Treatment Questionnaire

Dr. Ralph Ciampa, Director of Pastoral Care at the Hospital of the University of Pennsylvania and a clergy member of the Western Pennsylvania Conference opened the discussion of Health Care issues. He presented numerous facts (aided by slides). For example, the annual U.S. expenditure for health care is 4.3 trillion dollars, yet we are 18th in the world in child mortality rate. Twenty-two million children live in poverty in the United States. One quarter of all women are abused. Deaths by handgun are completely out of line with any other nation. Thirty percent of our health care dollars are spent during the last year of life, and one-half of that is spent during the last six months. Seventy percent of medical costs are for preventable diseases.

Role playing was used to illustrate the issues that come to hospital ethics committee. In the role-play a doctor and nurse talk about a patient who is obviously not going to live. Later, a male member of the patient's family protests that no one cares about his relative when the medical staff discourage heroic efforts to extend her life

Paul Wolpe, PhD, Co-Director of the Project of Informed Consent for the Center for Bio-Ethics at the University of Pennsylvania, discussed autonomy. He said "autonomy has become our national fettish, and we think that signing a paper gives doctors permission to deal with my autonomy." That's wrong, he said. "Autonomy erodes other principles, particularly justice."

Dr. Horace M. Delisser, Assistant Professor of Medicine, Pulmonary and Critical Care Division, University of Pennsylvania Health Systems, address "The Goals and Limits of Medical Care". He discussed Medical Futility, the problem facing the patient in the roll play segment, when decisions need to be made about treatment ("life-sustaining interventions") for patients who will not be improving. "It should be for well-being, not just to prolong biological life."

Attorney Betty Adler, Associate Chief Council, Office of Legal Affairs, University of Pennsylvania Health System, offered information on "Advanced Directive and Patient Self- Determination". "Rights of self-determination and privacy are not lost when one becomes ill. An adult can refuse treatment, even if life is shortened." Decide now what you want for yourself, she recommended, so others will not need to decide for you.

Linda O'Brien, RN, MA, discussed "Older Adult Choices for Medical Intervention". "Someone needs to speak for those who cannot speak for themselves," she said. Pastors can fill that role. "In teaching, and the prophetic voice, someone needs to be there for elderly patients."

Dr. James Tallman, President of Evangelical Manor, said, after describing situations he and his family have made recently about loved ones, that we can make decisions on three levels -- the "magical" where we are the center of the universe, a second level where all decisions are either right or wrong, and the wholistic level, where we accept ourselves as we really are, and accept others as they really are. He compared this kind of decision making to the Wesleyan Quadrilateral of tradition, scripture, experience, and reason.

Dr. Barbara Ott, RN, PhD, CCRN, Assistant Professor of the College of Nursing, Villanova University, spoke of the need for a living will. People need help because some of the terms and situations can be confusing.

A brief question and answer session followed the presentations.

Basic "Medical Ethics" Principles
Paul Root Wolpe, Ph.D.

1. Medical Ethics vs. Bioethics
   1. Hippocrates and the history of medical ethics: doctor-centered ethics
   2. Hallmarks in the development of modern bioethics
      1. Nuremberg (patient must be part of decision when any experiment is being done)
      2. Dialysis controversy of the 1960's ("God squad")
      3. Beecher's 1973 article on research abuses
      4. Tuskege scandal
      5. Christian Barnard and the first heart transplant
      6. Karen Ann Quinlan
      7. The end of theology and the rise of philosophers
2. Principlism and Beauchamp and Childress (founding book of Bioethics)
   1. Arguments over decision-making from ethical principles
   2. The sociological critique and quotidian ethics
      1. Beneficence
      2. Non-maleficence
      3. Justice
      4. Autonomy
   3. The triumph of autonomy
3. Beneficence / non-maleficence
   1. Can either be an absolute principle?
   2. Beneficence and paternalism: Can we do what is in the patient's best interest without their consent?
   3. Non-maleficence: What does "Do No Harm" mean in an age of chemotherapy and medical technology?
4. Justice
   1. Potentially infringes most on autonomy
   2. Is difficult in our political climate; Clinto health plan, Oregon health plan
   3. Competing principles of justice
5. Autonomy
   1. Easy to apply, easy to legislate
   2. Asking autonomy to do the work of the other three principles
   3. Autonomy as fetish

The Goals and Limits of Medical Care
Horace M. DeLisser, M.D.

Physician Obligations. The principles of beneficence (being of benefit to the patient) and non-maleficence (doing no harm to the patient) over the centuries have defined the fundamental obligations of physicians. These principles declare that the responsibilites of the physician are to promote the health and well-being of the patient or, when disease cannot be conquered, to alleviate pain and suffering, all done in a way that is caring and respectful of the patient's dignity and worth as a human being.

Medical Futility. Although a subject of much debate, we believe that the concept of medical futility arises out of the above understanding of the obligations of physicians. A life-sustaining intervention is futile if reasoning or experience indicate that the intervention would be highly unlikely to result in a meaningful survival for the patient, where a meaningful survival refers to a quality and duration of survival that would have value to that patient as an individual. (Less than 1% chance of survival = futile) [Adapted from the American Thoracic Society].

Inadvisable versus Futile Treatments It is important that we distinguish between treatments that are futile and those that are merely inadvisable from the viewpoint of the physician. A futile intervention is highly unlikely to accomplish the desired effect, no mater how often it is repeated or how long it is sustained. An intervention is not futile just because the potential benefit, though measurable, does not appear to be worth the effort or because we would not desire to "be like that" ourselves.

Futility and the Allocation of Medical Resources Futility should not be used as a cover for decisions concerning the allocation and distribution of costly and potentially scarce medical resources. An intervention is not futile simply because it costs too much or because an individual is not "deserving" of care.

Advance Directives
Betty S. Adler, Esq.

1. Some Concepts Underlying Advance Directives
   1. The common law right of self determination.
   2. The constitutional right of privacy.
2. The Courts' Analysis
   1. Cruzan v. Director, Missouri Department of Health 110 S. Ct. 2841 (1990): United States Supreme Court "right to die" decision;
   2. A state may require clear and convincing evidence of the patient's wishes.
3. The Federal Patient Self Determination Act (PSDA)
4. Pennsylvania's Advance Directive Law
   1. Advance Directive or Advance Declaration
   2. Living Will
   3. Durable Power of Attorney for Health Care
5. The Requirements for Making a Valid Advance Directive in Pennsylvania
6. When an Advance Directive becomes Operative
7. Revoking an Advance Directive
8. Legal Implications of the Law
9. What if there is no Advance Directive
   1. In re Fiori
   2. Substituted judgement test
   3. Best interests test

Advance Directives and the Older Adult
Linda A. O'Brien RN, MA

1. Problems with Promotion of Advance Directives
   • Estimate that 15% of Americans have formulated advance directives
   • Difficulty in approaching topic of death
   • Emphasis on advance directive form rather than substance
   • Health care providers as merchants of hope
   • Little training for doctors/nurses, other health care providers and clergy in discussion of advance directives and life-sustaining technology
2. Patient's Reasons for Not Having Advance Directives
   • No imminent need for decisions
   • Expect families to "know" their health care wishes
   • Current advance directive documents difficult to understand
3. Special Problems with Advance Directives in the Nursing Home Setting
   • Decision-making capacity often difficult to assess
   • Loss of autonomy and nursing home admission
   • Medical maternalism/paternalism
   • Unfamiliarity with life-sustaining technology
   • Wariness of signing a legal document
   • English as a second language
4. Institutional Complications
   • Variations in emergency capabilities and procedures
   • Variations in Institutional policies
   • Variations in how information is provided regarding life-sustaining technology and advance directives
5. Life-sustaining Treatment Preferences Among Nursing Home Residents' Survey
   • Study Objectives: To determine treatment preferences among nursing home residents, whether information concerning CPR procedures affected treatment preferences, with whom treatment preferences had been discussed, and to identify factors associated wtih preferences to have CPR performed
   • Study Participants: 421 randomly selected decisionally capable nursing home residents living in one of 49 nursing homes located in Pennsylvania, New Jersey, Maryland, or Delaware.
   • Results: 60% reported that they would elect to have CPR, 89% would choose hospitalization if seriously ill and 33% would elect enteral tube feedings, if they were no longer able to eat due to having serious and permanent brain damage. Individual factors associated with preferences for CPR included the following: African-American ethnicity, high self-reported physical mobility, belief that most important medical care decisions should be made by doctor, moderate-to-severe impairment in daily decision-making skills, and not having a spouse. Fourteen percent changed their preference from prefering CPR to not prefering CPR after receiving additional information about CPR procedures. Twelve percent reported having discussed preferences with health care providers, and 31% had discussed preferences with family members.

The Role of Clergy in Medical-Ethics Decision Making
Chaplain Ralph Ciampa

1. Decision Making. When patients' families and medical teams are making decisions about medical treatments, clergy are often in a unique position. They may be much more familiar with the medical system and issues than the patient or family; and they may be much more familiar with the patient's and family's concerns, values and resources than the medical team. Although clergy are occasionally deliberately excluded from these discussions, most clergy tend to underestimate how much their input would be valued by both the patients and families and the medical teams. Clergy can be important laisons and advocates. Taking initiative to offer these services to both patients and staff can open many doors.
2. Pastoral Care. Even when the very best possible decisions about medical care have been reached, there may be much grief and hardship to be lived through by the patient, family, and medical staff. The clergy's role as a non-judgmental and skillful listener, and as a comforting voice can hardly be overestimated. The sensitive and timely use of sacraments, rituals, scripture, and prayer are a great blessing in times of loss and transition. Keeping the patient and family in touch with their spiritual community, and offering long term follow-up after crises are important gifts of ministry.
3. Ongoing Teaching. Clergy are recognized as teachers by their congregations. We have a marvelous opportunity to equip our flock to meet the challenges of chronic and acute illness, difficult decisions, and painful losses. Sermons, Sunday school classes, special seminars, workshops, pamphlets and books, casual conversations, ministry at the bedside, and countless other ways are available. Clergy can help to anticipate the choices that may face all of use as fragile and finite human beings. We can begin to lay the theological and spiritual groundwork for these difficult times well before they overtake us.
4. Voice of Conscience. There are many challenging and complicated decisions to be made by our society regarding how health care will be offered in our country. Many vested interests are competing to shape the system to their advantage. There are many marginalized individuals and groups in our society with little voice to speak for their needs. Clergy and churches form an important bridge between those who may be least able to speak for themselves and those who wield power in our society. To be knowledgeable about the issues and to seek a just and equitable society falls in the honored prophetic tradition of ministry.

1. What do you value most abour your life? (For example: living a long life, living an active life, enjoying the company of family and friends, etc.)

2. How do you feel about death and dying? (Do you fear death and dying? Have you experienced the loss of a loved one? Did that person's illness or medical treatment influence your thinking about death and dying?

3. Do you believe life should always be preserved as long as possible?

4. If not, what kinds of mental or physical conditions would make you think that life-prolonging treatment should no longer be used? Being:

• unaware of my life and surroundings;
• unable to appreciate and continue the important relationships in my life;
• unable to think well enough to make every-day decisions;
• in severe pain or discomfort;
• other (describe):

5. Could you imagine reasons for temporarily accepting medical treatment for the conditions you have described? What might they be?

6. How much pain and risk would you be willing to accept if your chances of recovery from an illness or injury were good (50-50 or better)?

7. What if your chances of recovery were poor (less than one in 10)?

8. Would your approach to accepting or rejecting care depend on how old you were at the time of treatment? Why?

9. Do you hold any religious or moral views about medicine or particular medical treatments? What are they?

10. Should financial considerations influence decisions about your medical care? Explain.

11 What other beliefs or values do you hold that should be considered by those making medical care decisions for you if you become unable to speak for yourself?

12. Most people have heard of difficult end-of-life situations involving family members or neighbors or people in the news. Have you had any reactions to these situations? If so, describe:

Date:_______________________Signature:_________________________________________Date of Birth:____________

Address:_________________________________________________________________________________________________

Witness:____________________________________________Witness:_____________________________________________

Possible Treatment Plans:
A. I would want all possible efforts to preserve life as long as possible.
B. I would want comfort care only, and would not want medical treatment, including tube-feeding, to prolong my life.
C. I would want comfort care and tube-feeding but woudl not want other types of medical treatment to prolong my life.
D. My agent should consider the possible benefits and burdens of disease-fighting treatment, and consent only to treatment that he or she believes is in my best interests, as we have discussed them. My agent may refuse any active treatment or may consent to a trial of treatment and then stop treatment if it is not beneficial.

Possible Medical Situations:
1. Suppose you have a fatal ("terminal") condition. Your are unconscious and death is expected soon, with or without treatment. What treatment would you want? (Select from above, or write your own.)

2. Suppose you are permanently unconscious from an accident or severe illness. There is no reasonable hope of recovering awareness, but life support could keep your body alive for years. (This is called "persistent vegetable state" or "permanent coma.") What treatment plan would you want? (Select from above or write your own.)

3. Suppose you are in a state of very advanced loss of mental capability, due perhaps from stroke or Alzheimer's disease. You cannot recognize or communicate with those close to you, and can do almost nothing for yourself. You could survive in this state for some time with medical treatment. What treatment plan would you want? (Select from above, or write your own.)

4. Suppose you are in a state of permanent but not total confusion, perhaps from stroke or Alzheimer's disease. You are legally "incompetent" and cannot recognize people and interact with them in a meaningful way, but you are up and around and people are taking care of you. You are not in distress and seem to be able to experience some satisfactions in daily life, such as eating or hearing music. Then you get an illness that might be fatal. What treatment plan would you want? (Select from above, or write your own.)

5. Suppose you are frail, chronically ill and uncomfortable, with a limited range of activities available to you. Then you become unconscious, at least temporarily, due to an acute illness. The illness is likely to be fatal unless vigorously treated in a hospital but even intensive care offers only a small change of recovery to your former condition. It's much more likely that you will end up worse off than before, or will die in spite of all heroic measures. What treatment plan would you want? (Select from above, or write your own.)

6. Suppose you unexpectedly suffer a seriousl injury or illness. You have less than a 5 percent chance of good recovery and, if you survive, will have serious brain damage. What treatment plan would you want? (Select from above, or write your own.)

7. Use this space to describe any other medical situations you'd like to address:

Date:____________________Signature:___________________________________________Date of Birth:__________________

Address:______________________________________________________________________________________________________

Witness:________________________________________________Witness:______________________________________________

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