2. The Prayer of Moses (as) Rabbi Sharheli sadri wa yussril Amri wahlul uqdatammillisani yafqahu qawli Translation “O Lord!, expand my heart, make my task easy for me, and untie the knot from my tongue, so that they can understand me”

3. Advance Directives and Living Wills for American Muslims Shahid Athar, MD, FACP Medical Ethics Committee IMANA & St. Vincent Hospital Indianapolis, IN, USA Presented on Sept.17,2010 At the IMANA/Hofstra University

4. The Disclaimer I am on speaker’s bureau of several pharmaceutical companies, however, this CME presentation is not financially supported by any of them

5. Learning Objectives 1. The need for Advance Directives and Living wills 2. Shared decision making process in patient care Examples of AD and LW

6. A case for Advance Directive JW,74, father of a Catholic physician, suffered a massive stroke which left him paralyzed and with receptive and expressive aphasia. His AD stated that he did not want mechanical ventilation or nutrition/hydration in “terminal stage”. His caregivers decided to put a G tube. He survived 150 days. When he became comatose, it was decided to stop his feeding and allowed him to die peacefully at home.

7. Patient Rights Basic human dignity and respect Access to certain information Protection of one’s privacy Safety Right to exercise control over one’s self (AUTONOMY)

8. Questions on Rights What are Rights of Man verses Rights of God? Who has ownership of the body (in life and after death)? Is human body a dead person’s property? We may have a right to donate an organ but do we have right to be cremated? Do Muslims have a right to seek Shariah in EOL issues ?(in Advance Directives and Living Wills) Autopsy: (What is forbidden in life is also forbidden in death unless required by law)

9. Basic Human Dignity and Respect Underlying moral value. Protected by Constitution and state laws.

10. Right to Exercise Autonomy Informed Consent Right to refuse treatment Right to make Advance Directive Right to name Health Care Representative

11. Advance Directives In Advance of critical illness, disability, or incapacity, One may issue Directives regarding his/her wants, wishes, preferences about healthcare, life-support, etc.

12. Myths about Advance Directives AD means “do not treat” HCR means giving up control of my healthcare decisions AD is only for elderly AD is permanent and can not be changed Verbal wishes are not legal Physicians don’t have to follow them

13. Indiana Advance Directives Living Will Life Prolonging Procedures Declaration Appointment of Health Care Representative Power of Attorney Psychiatric Advance Directive Organ donation Out of hospital DNR Others (JW - refusal of blood products)

14. Living Will Requirements: –18 years of age –“sound mind” –“voluntary” –“in writing” –“dated” –“signed” (in presence of 2 witnesses) 18 years of age, and, Not the person who signed for declarant Not the parent, spouse or child Not entitled to share of estate Not responsible for medical expenses

15. Living Will Provisions “ My dying shall not be artificially prolonged” –“incurable injury, disease or illness” –“my death will occur within a short period of time” –“use of life-prolonging procedures (lpp) would only prolong the dying process” “I be permitted to die naturally” “I be provided with appropriate pain control”

16. Living Will Permits preference for “artificially supplied nutrition and hydration” –“Yes, even if effort to sustain life is futile or excessively burdensome to me” –“No, if effort to sustain life is futile or excessively burdensome to me.” –Let my Health Care Rep. decide

17. Living Will –Requires hospitals to ask if pt has A.D. –Requires that MDs give Living Will “great weight” in determining intent of incompetent pt. –Requires that form be substantially the same as set out in the law, but that additions may be made –Protects any healthcare provider honoring a patient’s living will.

18. Living Will and Autonomy –A competent patient may refuse any medical treatment (even life-saving treatment). –Living Will preserves that right after decision- making capacity has been lost.

19. Life Prolonging Procedures Declaration States a patient’s preference to receive Life-Prolonging Procedures (LPP). Expresses patient’s desire for life-prolonging procedures, including nutrition, hydration, medication and other interventions to extend life/dying process in event of a terminal condition. Seldom used.

20. Health Care Representative Allows for the appointment of another individual to make medical decisions if/when one lacks capacity for decision-making Requirements: –Appointer must have capacity at time of appointment –Appointment must be in writing, signed and witnessed (by one person) other than HCR

21. HCR – Powers and Responsibilities –Acts only when appointor lacks capacity –Acts in all matters of healthcare, even withholding/ withdrawing of life-support –Must act in appointor’s “best interest” –May delegate powers to another –HCR acting in good faith is immune from prosecution –HCR giving consent to medical treatment is not financially responsible for cost of treatment

22. Health Care Representative Compatible with Living Will Very important for patients who lack immediate family or who desire someone other than family to be involved in decision-making

23. Power of Attorney “durable power of attorney” “attorney in fact” May be empowered to act for you in financial matters May be empowered to act for you in healthcare matters Both

24. Power of Attorney Executed while one still possesses capacity Must be in writing Must be notarized Must be specific as to powers When used to convey healthcare powers the “attorney in fact” is referred to as “healthcare power of attorney”

25. Competence v. Capacity Competence - Legal Determination made by court If a person is adjudged incompetent, they are legally not capable of making health care decisions or other decisions. Court will appoint guardian(s) to act on behalf of incompetent person (known as a “ward”). Generally guardianship is a permanent/long term decision. Capacity - Medical Determination made by MD Capacity requires ability to: –Comprehend –Deliberate –Communicate Capacity may wax and wane

26. What does “Ethical” Mean? Ethical – Conforming to moral standards. Moral Standards – Principals with respect to right or wrong conduct. Right – Virtuous. Virtuous – Characterized by moral virtue. Virtue – General moral excellence. So what does “ethical” mean?

27. Ethics and Beliefs In order to determine what is “ethical,” it is necessary to establish what you believe. Believe – to accept as true, genuine, real. Belief – conviction of the truth of some statement or reality of some being.

28. Beliefs Ethics, morals and laws articulate the beliefs of: Individuals Societies Cultures Religious Traditions Lawmakers – legislators, judges, administrators The majority and/or leadership of groups Those in power

29. Ethical Questions Throughout the Ages When does life begin? Does man have a soul? If so, when does it “enter” and “leave” the body? What treatments is a person morally obligated to undergo in order to preserve their life or health? When is a person dead? (cardiac, pulmonary or brainstem)

30. Foreseeing v. Intending Is there a moral distinction between: Foreseeing the effects of your actions; and Intending the effects of your actions?

31. Foreseeing v. Intending Case Examples: Child with cancer. Pregnant woman with toxemia. Patient in a PVS with feeding tube.

32. Child with Cancer MDs and parents agree to surgery, chemo and radiation. Intent of actions – Cure of cancer. Foreseeable effects of actions – Pain and debilitation. Do MDs and parents intend to cause pain and debilitation?

33. Pregnant Woman with Toxemia 18 week gestation pregnancy threatening the life of mother. MDs and woman decide to deliver baby. Intent of actions – Save woman’s life. Foreseeable effects of actions – Death of baby. Do MDs and woman intend death of baby?

34. Patient in PVS with Feeding Tube Decision made to withdraw feeding tube. Intent of actions – Respect patient self-determination by discontinuing unwanted medical treatment. Foreseeable effect of actions – Death of patient. Do MDs and family intend patient’s death?

35. Tube Feeding Is artificially delivered nutrition and hydration –Medical Treatment? –Basic Care? –Morally obligatory for a person to accept? –Morally obligatory for an MD to provide?

36. Withholding v. Withdrawing Treatment Is there a moral distinction between –Withholding Treatment and –Withdrawing Treatment?

37. Standard of Proof When a patient is incapacitated, what level of certainty is required for life- sustaining treatment to be withdrawn? Patient’s written advance directive. Patient’s prior statements made to 2 or more witnesses. Patient’s prior statements made to one other person. Surrogate’s knowledge of patient’s values, beliefs, personality? Surrogate’s judgment regarding patient’s best interests (benefits and burdens of treatment, hope of recovery and patient’s quality of life). Life-sustaining treatment should never be removed from an incapacitated patient.

38. Sustaining Physical Life Should a person’s physical life be sustained despite: The person’s wishes? The person’s “quality of life”? The expense, burden and/or suffering of family?

39. Burdens to Patient in PVS? Can a person with no capability for awareness experience burdens from being on life support? If not, should the burdens to society and family be considered? Do burdens to society and family justify discontinuation of life support?

40. Benefits to Patient in PVS? Can a person with no capability for awareness experience benefits from being on life support? If not, should the benefits to society and family be considered? Do benefits to society and family justify continuation of life support?

41. Family Disagreements When there is a disagreement between family members concerning dis/continuation of life support for an incapable patient, who should resolve the conflict? Health care providers? Majority of patient’s family members? Courts? Legislature? Religious leaders? The patient should be kept alive with life support.

42. Beliefs… Are beliefs right or wrong? If so, who decides? Are a person’s beliefs about life and death likely to change? Will end-of-life cases always stir intense passions?

43. Advance directives at the end of life NEJM April 1, 2010 (Silveria et all) 3746 subjects age 60 or older 42% needed decision making -73% lacked decision making capacity -Those who had durable power of attorney for health care were less likely to die in a hospital(38.8% verses 50.4%) and were given less all care possible (8.1% verses 27.7%)

44. In-the-Moment End-of Life Decision Making ( Sudore et all AIM 8/17/10) To prepare patients in out patient setting to participate in-the-moment decision making by A. Assessing the readiness B. Educating and motivating C. Addressing the barriers

45. Steps to prepare patients for in-the moment end of life decision making 1.Choosing an appropriate surrogate 2.Clarifying patients values over time 3.Establishing leeway in surrogate decision making.

46. Islamic Living Will and Advance Directives “IMANA recommends that all Muslims have a “living will”, advance directive and a proxy case manager to let the physicians know of patient’s wishes when he/she cannot give directions about decision making process (i.e. when in coma)”

47. The Islamic Living Will 1. Respects patients autonomy 1.To withhold or withdraw heroic procedures in a terminal state 2.To continue hydration, nutrition and necessary medication under physician’s directions 3.Appoints case manager if unable to give directions (sibling, spouse, parent or adult children) 4.No Autopsy unless required by law

48. References--- IMANA’ s position on medical ethics; available at www.imana.org, published in JIMA 2008 www.imana.org Khan,Faroque: Fordham Urban Law J, Nov’2002 The Physician and the Hopelessly Ill Patient- published by the Society For The Right to Die Athar, Shahid. Journal of law, Medicine and Ethics; Spring’ 08 ” Enhancement Technologies and the Person- Islamic view” Silveira et all ; NEJM April 1,2010 “Advance directives and decision making before death” Sudore,R.L; “ In- The- Moment AD”- Annals of IM, 17 Aug.2010.

49. The Disclaimer I am on speaker’s bureau of several pharmaceutical companies, however, this CME presentation is not financially supported by any of them

50. Thank You !(Shukran) www.islam-usa.com www.imana.org Sathar3624@aol.com