It s All in God s Hands. Understanding and responding when this statement arises in medical decision making discussions

Transcription

1 It s All in God s Hands Understanding and responding when this statement arises in medical decision making discussions

2 Presenters Reverend Carla Ficke, MDiv. Becky Niemeyer, LCSW, MSW Sharon Stramel, RN-C,CHPN John Girten, MDiv. Lise Barbour, MD Nancy Seibolt, MD

3 Case 1; Act 1 Ms. Edi s Story: She s not born again, but we re hoping for a miracle.

4 Intersecting Frames of Reference Patient s Provider s Our Encounter

5 Provider s Perspective Dealing with emotional content of cases Identify Risk Factors that predispose to emotions adversely affecting patient or provider Monitor for signs/behaviors and symptoms/feelings affecting patient care Identify sources of the emotion Name/accept/normalize the emotion Reflect and respond constructively to the emotion Meier, D.E., Back, A.L., Morrison, R.S., (2001) The Inner Life of Physicians and Care of the Seriously Ill. JAMA, 286 (23)

6 Provider s Perspective Dealing with emotional content of cases Constructive response to presence of emotion Consider implications/consequences of behaviors Think of alternative outcomes Consult trusted colleague Choose professional behaviors Step back from the situation to gain perspective Meier, D.E., Back, A.L., Morrison, R.S., (2001) The Inner Life of Physicians and Care of the Seriously Ill. JAMA, 286 (23)

7 Patient and Family Perspectives Internal Influences Distrust of medicine Flawed understanding of palliative philosophy Religious beliefs Cultural and language issues Unresolved grief and loss experiences Guilt Fear Previously held expectations Meier, D.E., Back, A.L., Morrison, R.S., (2001) The Inner Life of Physicians and Care of the Seriously Ill. JAMA, 286 (23)

8 Patient and Family Perspectives External Influences Media images/information Family influence Religious directives, doctrine and leaders Professional advisors outside the team Tendency towards litigation Meier, D.E., Back, A.L., Morrison, R.S., (2001) The Inner Life of Physicians and Care of the Seriously Ill. JAMA, 286 (23)

9 What does it really mean? It s all in God s hands. Do EVERYTHING! God will determine the outcome Passive decision making styles - not making a decision IS a decision When advance directives are NOT in place and the family is afraid to decide General disagreement with medicine God owns the body- we won t interfere with God s doings Sanctity of life vs. quality of life??

10 What does it really mean? It s all in God s hands. Belief in miracles I ve beat it before Inability to tolerate ambiguity: everything should be black/white. Avoidance expressed in religious language Mistrust because of past discrimination Belief that suffering has redemptive value Respect for Mystery

11 Styles of Religious Coping Passive Deferring/Pleading Style Self-Directed Style Active Surrender Style Collaborative Style Pargament, Ken. The Psychology of Religion and Coping: Theory, Research, Practice. Guilford Press, NY, 1997.

12 Religious Coping Passive Deferring/Pleading Style Control is centered in God Miracle-pleading God makes things happen for a reason RISK: lose faith or blame self/other when miracle doesn t happen Pargament, Ken. The Psychology of Religion and Coping: Theory, Research, Practice. Guilford Press, NY, 1997.

13 Religious Coping Self-Directed Style Control is centered in self; God is passive God gives people tools and resources to solve problems for themselves RISK: too many factors are beyond our control, therefore can result in self/other blame and depression Pargament, Ken. The Psychology of Religion and Coping: Theory, Research, Practice. Guilford Press, NY, 1997.

14 Religious Coping Active Surrender Style Control is centered in efforts to work through God The responsibility for problem-solving is surrendered to benign Being RISK: lower self-esteem, but higher acceptance of outcome Pargament, Ken. The Psychology of Religion and Coping: Theory, Research, Practice. Guilford Press, NY, 1997.

15 Religious Coping Collaborative Style Control is centered in mutually active, partnership-relationship between God and the individual God and I will make it through God will help me figure out what to do. This style consistently points to constructive coping with stress. Pargament, Ken. The Psychology of Religion and Coping: Theory, Research, Practice. Guilford Press, NY, 1997.

16 FOUR EXPECTATIONS AUTOGENESIS: I am the master of my fate. SYNERGISM: I am in tune with the infinite. EMPATHY: God experiences WITH me. MONERGISM: God worked a miracle IN me. Marty, Martin, (1988) Religion and healing. The Four Expectations, Second Opinion, 7:

17 Important Principles: Medical Decision Making Let s take a step back: some principles to consider when any patient or family is making a decision Ethical Issues: autonomy Legal issues: Capacity vs. competence Medical Futility issues

18 Medical Ethical Considerations: The principle of autonomy An adult with full capacity to decide has a full and perfect right to determine what can be done to his or her body. Recognized in ethics, medical practice, and law. Davenport, John MD, JD. Ethical Principles in Clinical Practice Permanente Journal Vol. 1(1),21-24.

19 Capacity vs. Competence Decision making capacity: the ability of a patient to make decisions for a specific medical intervention Performed by Physician and Health Care Team Competence: Global decision making ability involving multiple aspects of daily living Determined only by a court of law

20 Is Our Patient Decisional? Bedside Method of Evaluating Capacity Can the patient receive information? must be awake, not necessarily oriented to person, place, time and situation. Can the patient process the information? Can the patient communicate his or her preferences? Arnold R. Fast Facts and Concepts #55, Decision making capacity, 2nd Edition. July Endof-Life/Palliative Education Resource Center

21 Decision-Making Capacity: Things to look for Understanding Task-specific sliding scale view demands a higher level of certainty when the decision carries risk of greater harm Logical Severe depression or hopelessness may make some cases very difficult, consult psychiatry for help with this. Time-specific Consistent Arnold R. Fast Facts and Concepts #55, Decision making capacity, 2nd Edition. July Endof-Life/Palliative Education Resource Center

22 A decisional patient may choose: INFORMED REFUSAL: Based on autonomy, patients may refuse any procedure, treatment, or even the advice of their physicians. The fact that this refusal is seen as ill-advised or even irrational by the physician does not counter moral, social, and legal norms which hold that competent patients have the right to determine their destinies. INFORMED CONSENT: Review risks, benefits, alternatives of medical procedure or therapy. Davenport, John MD, JD. Ethical Principles in Clinical Practice Permanente Journal Vol. 1(1),21-24

23 Medical Futility Issues Families insist on futile treatment when: Disagreement re: prognosis Rejection of physician authority Distrust of Western medical systems Belief in Miracles Lo, B., Ruston, D., Kates, L.W., (et al) (2002) Discussing religious and spiritual issues at the end of life. JAMA, 287 (6),

24 Medical Futility Issues Ineffective Tactics: Using facts : the disagreement is NOT about facts but about values Saying that miracles are impossible: try to reframe the miracle Using the family s religious terms to get them to agree with the plan can be manipulative Pressing the issue over and over: try LISTENING! Lo, B., Ruston, D., Kates, L.W., (et al) (2002) Discussing religious and spiritual issues at the end of life. JAMA, 287 (6),

25 Medical Futility Issues What to do? Clarify patient s concerns/beliefs/needs Acknowledge importance of religion LISTEN! Identify common goals of care Mobilize support for the patient and family Lo, B., Ruston, D., Kates, L.W., (et al) (2002) Discussing religious and spiritual issues at the end of life. JAMA, 287 (6),

26 Acknowledging and Reducing An Inherent Power Differential On whose ground are we meeting? (physically and ideologically) Whose vocabulary is primary here? Social or historical context of this encounter? How have I been trained to see this person and this population? Abrums, M., (2000) Jesus will fix it after awhile : meanings and health. Social Science and Medicine, 50,

27 Acknowledging and Reducing An Inherent Power Differential Who calls for/facilitates the meeting? Who speaks first? Who listens? Does the patient speak for self? Who does? Who determines who speaks for the patient? Abrums, M., (2000) Jesus will fix it after awhile : meanings and health. Social Science and Medicine, 50,

28 1. Reasons for Relocating 2. Legal Status 3.Time in the Community 10. Values About Family Structure, Power, Myths and Rules 9. Values About Education and Work Family Member s Names 4. Language Spoken at Home or in the Community 5. Health Beliefs 8. Contact With Religious and Cultural Institutions 7. Holidays and Special Days 6. Crisis Events and Their Impacts Culturegram Elaine P Congress, DSW. Cultural and Ethical Issues in Working with Culturally Diverse Patients and Their Families: The Use of the Culturegram to Promote Cultural Competent Practice in Health Care Settings. Social Work in Health Care. Haworth Press Vol 39. No 3 of 4. pp

29 TOOLS RESPECT, REVERENCE, COMPASSION, CURIOSITY Acknowledge that provider s past experience will influence the encounter Use open-ended questions Use clear, non-technical language Use translator services Involve the pt s own spiritual guide

30 TOOLS Review Goals of Care Reframe possibilities in the POSITIVE Plant seeds for further discussions Build an alliance with the patient and family

31 TOOLS Create a safe place for the discussion both physically and emotionally Document communications frequently Continue to inform and educate the patient and family Consider unarticulated grief or guilt For an impasse: consider ethics consultation

32 TOOLS Recognize where the patient is and go one step beyond, offering hopeful reframing of It s in God s hands Remember: two opposite strong beliefs cannot be held by a person at the same time: I m going to live to 85 may not be possible with a terminal diagnosis

33 TOOLS LISTEN!!! At least four times longer than you speak. Always remember to debrief with the care team.

34 Taking a Spiritual History S: Spiritual Belief System P: Personal Spirituality I: Integration with spiritual community R: Ritualized practices and restrictions I: Implications for medical care T: Terminal events planning Maugans TA. The SPIRITual History. Arch Fam Med. 5:11-16, 1997.

35 What s my Line? When the patient or family is depending on a miracle (medically inexplicable event) and their assumption is that God works mostly through miracles.

36 What s my Line? When the patient refuses to give up on the God of Faith. To withhold interventions would be premature therefore Let s wait on God.

37 What s my Line? When the patient says, Preserve life at all costs.

38 What s my Line? When the patient believes in the redemptive value of suffering.

39 and when in doubt It s okay to be the dummy and walk on through the land mines. Don t take yourself too seriously.

40 Questions to ponder upon In the end, is everything really out of our hands anyway? Does trying to plan/discuss/anticipate everything not honor the mystery of death? TIC/TOC, Living/dying, Problem/solution: Ultimately we want our patients to have the experience of caring so that they can conceive a solution

41 We shall not cease from exploration And the end of all our exploring Will be to arrive where we started And know the place for the first time. T.S. Elliot

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