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Ethics Consult Service: A Case Study Walter Limehouse, MD, MA MUSC Ethics Committee.

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1 Ethics Consult Service: A Case Study Walter Limehouse, MD, MA MUSC Ethics Committee

2 Objectives Using a case study Using a case study explore ethical principles explore ethical principles discover how the ECS may help resolve ethical concerns in patient management. discover how the ECS may help resolve ethical concerns in patient management.

3 Case Study: 79 year old woman has aged gracefully Very independent, lives alone. Very independent, lives alone. Ten days ago while out shopping Ten days ago while out shopping experienced a massive stroke experienced a massive stroke required endotracheal intubation by EMS. required endotracheal intubation by EMS. She remains in ICU on a ventilator. She remains in ICU on a ventilator.

4 Case Study: 79 year old woman has aged gracefully No advance directive. No advance directive. Widow with three children Widow with three children

5 Case Study: 79 year old woman has aged gracefully local daughter local daughter “don’t keep mom on ventilator” “don’t keep mom on ventilator” admits no related talks with mother admits no related talks with mother daughter from NYC – newly arrived daughter from NYC – newly arrived “do everything” “do everything” son from CA - travels frequently son from CA - travels frequently not yet notified not yet notified

6 Case Study: 79 year old woman has aged gracefully MD wants MD wants withdraw ventilator withdraw ventilator tracheostomy and feeding tube tracheostomy and feeding tube

7 Questions What is the difference between ethics committees and ethics consult services? What is the difference between ethics committees and ethics consult services? How may ECS help resolve ethical concerns in patient care? How may ECS help resolve ethical concerns in patient care?

8 ETHICS COMMITTEE MUHA Committee within Center for Clinical Effectiveness and Patient Safety MUHA Committee within Center for Clinical Effectiveness and Patient Safety Charter Charter Facilitate shared clinical decision-making within ethical framework by patients, family members or surrogate decision makers, and staff. Facilitate shared clinical decision-making within ethical framework by patients, family members or surrogate decision makers, and staff. Subcommittee structure on education, policy development and review, and clinical ethics consultation Subcommittee structure on education, policy development and review, and clinical ethics consultation

9 Ethics Consultation Service Service branch of the Ethics Committee Service branch of the Ethics Committee Multiprofessional group Multiprofessional group Nurses, physicians, chaplains, community representatives, an attorney, other clinicians Nurses, physicians, chaplains, community representatives, an attorney, other clinicians PROVIDING HELP FOR DIFFICULT AND COMPLEX PATIENT CARE DECISIONS PROVIDING HELP FOR DIFFICULT AND COMPLEX PATIENT CARE DECISIONS Providing help with professional conflicts Providing help with professional conflicts

10 Ethics Consultation Service PROVIDING HELP FOR DIFFICULT AND COMPLEX PATIENT CARE DECISIONS PROVIDING HELP FOR DIFFICULT AND COMPLEX PATIENT CARE DECISIONS Identify the ethical issues Identify the ethical issues Identify the ethically appropriate treatment options Identify the ethically appropriate treatment options Provide problem-solving and informational expertise Provide problem-solving and informational expertise Promote efforts to work out the conflict among the participants, if necessary Promote efforts to work out the conflict among the participants, if necessary

11 Ethics Consultation Service Difficult & Complex Patient Care Decisions Difficult & Complex Patient Care Decisions differences in opinion among caregivers and/or family members about treatment differences in opinion among caregivers and/or family members about treatment end of life decision-making end of life decision-making surrogate decision-makers and/or patient advance directives surrogate decision-makers and/or patient advance directives questions about policies, such as resuscitation or withholding/withdrawing life-sustaining treatment questions about policies, such as resuscitation or withholding/withdrawing life-sustaining treatment

12 Questions How do Advance Directives differ from Health Care Powers of Attorney? How do Advance Directives differ from Health Care Powers of Attorney? Who are health care surrogates and under what standard do surrogates act? Who are health care surrogates and under what standard do surrogates act? Who may be patient surrogates under SC Law? Who may be patient surrogates under SC Law?

13 Advance Directives Statements by competent decision-makers Statements by competent decision-makers Interventions to accept or refuse if they lose decision-making capacity Interventions to accept or refuse if they lose decision-making capacity Who may act as surrogate Who may act as surrogate

14 Advance Directives Oral Statements Oral Statements To family members or friends To family members or friends Informed? Specific treatment/ situations? Repeated? Informed? Specific treatment/ situations? Repeated? To physicians To physicians Written documents Written documents Living will Living will Health care proxy / power of attorney Health care proxy / power of attorney

15 Advance Directives Oral Statements Oral Statements Limited by court requirements for evidence Limited by court requirements for evidence “Beyond reasonable doubt” “Beyond reasonable doubt” “Clear and convincing” “Clear and convincing” May require mention of specific intervention and clinical situation May require mention of specific intervention and clinical situation “Preponderance of evidence” “Preponderance of evidence”

16 Advance Directives Written documents Written documents Living will Living will Directs physicians to withdraw or withhold specific life-saving treatments if patient has terminal condition or persistent vegetative state Directs physicians to withdraw or withhold specific life-saving treatments if patient has terminal condition or persistent vegetative state What is “terminal condition” What is “terminal condition” Which treatments “merely prolong dying process” Which treatments “merely prolong dying process”

17 Advance Directives Written documents Written documents Health care proxy / power of attorney Health care proxy / power of attorney Decision-making priority over other potential surrogates Decision-making priority over other potential surrogates Applies to all medical situations where decision- making capacity is lost Applies to all medical situations where decision- making capacity is lost Substituted judgment Substituted judgment Patient’s previously expressed choices or best interests Patient’s previously expressed choices or best interests

18 Healthcare Surrogate Has authority to make healthcare decisions for patient who has lost decision-making capacity Has authority to make healthcare decisions for patient who has lost decision-making capacity Standards Standards Substituted judgment (if patient’s wishes known) Substituted judgment (if patient’s wishes known) Best interest Best interest ADULT HEALTH CARE CONSENT ACT ADULT HEALTH CARE CONSENT ACT SC Code of Laws, Title 44 Chapter 66 SC Code of Laws, Title 44 Chapter 66

19 ADULT HEALTH CARE CONSENT ACT Priority of Surrogates Priority of Surrogates Legal guardian, attorney-in-fact appointed by the patient in a durable power of attorney, statutory surrogate given priority Legal guardian, attorney-in-fact appointed by the patient in a durable power of attorney, statutory surrogate given priority Spouse, unless legally separated Spouse, unless legally separated Parent or adult child of the patient Parent or adult child of the patient adult sibling, grandparent, or adult grandchild of the patient adult sibling, grandparent, or adult grandchild of the patient

20 ADULT HEALTH CARE CONSENT ACT Priority of Surrogates (2) Priority of Surrogates (2) any other relative by blood or marriage who reasonably is believed by the health care professional to have a close personal relationship with the patient; any other relative by blood or marriage who reasonably is believed by the health care professional to have a close personal relationship with the patient; person given authority to make health care decisions for the patient by another statutory provision. person given authority to make health care decisions for the patient by another statutory provision.

21 Case Study: 79 year old woman has aged gracefully No consensus obtained on withdrawal of care. Tracheostomy done and PEG-tube inserted. No consensus obtained on withdrawal of care. Tracheostomy done and PEG-tube inserted. Three months pass. NY sister has accused the local sister and physicians of "wanting to murder mother." NY sister camps out in patient's room; local sister visits infrequently; brother has appeared, but has difficulty mediating between sisters. Three months pass. NY sister has accused the local sister and physicians of "wanting to murder mother." NY sister camps out in patient's room; local sister visits infrequently; brother has appeared, but has difficulty mediating between sisters.

22 Case Study: 79 year old woman has aged gracefully Patient successfully weaned from ventilator, but no change in mental status. Has spontaneous eye opening, but does not otherwise respond. Patient successfully weaned from ventilator, but no change in mental status. Has spontaneous eye opening, but does not otherwise respond. She develops pneumonia and incipient respiratory insufficiency. Nurses express discomfort about continuing "futile" care. She develops pneumonia and incipient respiratory insufficiency. Nurses express discomfort about continuing "futile" care.

23 Questions What is persistent vegetative state (PVS)? What is persistent vegetative state (PVS)? How do Quinlan, Cruzan, Schiavo cases affect care of persons in PVS? How do Quinlan, Cruzan, Schiavo cases affect care of persons in PVS?

24 Quinlan, Cruzan, Schiavo

25 Vegetative State No cortical function No cortical function No purposeful activity No purposeful activity Can not obey verbal commands Can not obey verbal commands Can not experience pain Can not experience pain Preserved brainstem function Preserved brainstem function Breathing and circulation intact Breathing and circulation intact Not comatose (has sleep-wake cycles) Not comatose (has sleep-wake cycles)

26 Vegetative State Preserved brainstem function (2) Preserved brainstem function (2) Roving eye movements, may track Roving eye movements, may track Reflexes intact (not replicable) Reflexes intact (not replicable) Suck, chew, swallow Suck, chew, swallow Pupillary, oculocephalic, deep tendon reflexes Pupillary, oculocephalic, deep tendon reflexes Withdrawal, posturing, startle to noise Withdrawal, posturing, startle to noise

27 Persistant Vegetative State Vegetative state lasting over one month Vegetative state lasting over one month Nontraumatic injury waking rare Nontraumatic injury waking rare after 3 months after 3 months Traumatic injury waking rare after 1 year Traumatic injury waking rare after 1 year Mean survival 2-5 years, some over 15 years Mean survival 2-5 years, some over 15 years

28 Persistant Vegetative State Tube feeding required Tube feeding required Unable to swallow or protect airway Unable to swallow or protect airway Incontinent, requiring total nursing care Incontinent, requiring total nursing care Common complications Common complications Decubitus ulcers Decubitus ulcers Aspiration pneumonia Aspiration pneumonia Urosepsis Urosepsis

29 Persistant Vegetative State Other neurologic catastrophes Other neurologic catastrophes Brain death – no cortical or brainstem function Brain death – no cortical or brainstem function Locked-in syndrome – conscious, minimal motor Locked-in syndrome – conscious, minimal motor Severe dementia – conscious, poorly responsive; some motor Severe dementia – conscious, poorly responsive; some motor

30 Quinlan, Cruzan, Schiavo Karen Ann Quinlan case Karen Ann Quinlan case 21 year-old woman in PVS on ventilator (1975) 21 year-old woman in PVS on ventilator (1975) had ingested alcohol and sedatives during party had ingested alcohol and sedatives during party Physician beliefs Physician beliefs would never regain consciousness would never regain consciousness would die off ventilator would die off ventilator

31 Quinlan, Cruzan, Schiavo Karen Ann Quinlan case (2) Karen Ann Quinlan case (2) Father Father supported by chaplain, Catholic priest and Diocese of New Jersey supported by chaplain, Catholic priest and Diocese of New Jersey wanted ventilator stopped wanted ventilator stopped requested court appointment as guardian with authority to stop ventilator when physicians refused requested court appointment as guardian with authority to stop ventilator when physicians refused

32 Quinlan, Cruzan, Schiavo Karen Ann Quinlan case (3) Karen Ann Quinlan case (3) New Jersey Supreme Court ruling (1976) New Jersey Supreme Court ruling (1976) SUBSTITUTED JUDGEMENT SUBSTITUTED JUDGEMENT Right to privacy included right to decline medical treatment – guardian could exercise this right – permitted to render best judgment whether whether patient would choose to decline treatment Right to privacy included right to decline medical treatment – guardian could exercise this right – permitted to render best judgment whether whether patient would choose to decline treatment Withdraw ventilator if guardian, family, physicians, and ethics committee agree no possible recovery of cognitive state Withdraw ventilator if guardian, family, physicians, and ethics committee agree no possible recovery of cognitive state

33 Quinlan, Cruzan, Schiavo Karen Ann Quinlan case (4) Karen Ann Quinlan case (4) First “right to die” case exploring dilemma that life-sustaining interventions inappropriate in some circumstances First “right to die” case exploring dilemma that life-sustaining interventions inappropriate in some circumstances Decision-making by patients, family, and physicians without routine recourse to courts Decision-making by patients, family, and physicians without routine recourse to courts Hospital ethics committees development supported Hospital ethics committees development supported Survived 10 years PVS post ventilator removal Survived 10 years PVS post ventilator removal

34 Quinlan, Cruzan, Schiavo Nancy Cruzan case Nancy Cruzan case 26 year-old woman in PVS post-MVA (1983) 26 year-old woman in PVS post-MVA (1983) Parents asked feeding gastrostomy be removed (1986) Parents asked feeding gastrostomy be removed (1986) State hospital requested court order State hospital requested court order Cruzan statement prior to MVA made to housemate “not want to live as vegetable” Cruzan statement prior to MVA made to housemate “not want to live as vegetable” – family supported statement – family supported statement

35 Quinlan, Cruzan, Schiavo Nancy Cruzan case (2) Nancy Cruzan case (2) Missouri Supreme Court (1986) Missouri Supreme Court (1986) Restricted decision-making for incompetent patients Restricted decision-making for incompetent patients withhold life-sustaining treatment only if living will or clear statement that specific intervention not wanted in specific situation withhold life-sustaining treatment only if living will or clear statement that specific intervention not wanted in specific situation Unqualified state’s interest in preserving life Unqualified state’s interest in preserving life

36 Quinlan, Cruzan, Schiavo Nancy Cruzan case (3) Nancy Cruzan case (3) U.S. Supreme Court (1990) U.S. Supreme Court (1990) Competent patients have “constitutionally protected liberty interest in refusing unwanted medical treatment” Competent patients have “constitutionally protected liberty interest in refusing unwanted medical treatment” Constitution may rely on family decision-making, but not required Constitution may rely on family decision-making, but not required

37 Quinlan, Cruzan, Schiavo Nancy Cruzan case (4) Nancy Cruzan case (4) U.S. Supreme Court (1990) U.S. Supreme Court (1990) States States may establish “procedural safeguards” for medical decisions for incompetent patients may establish “procedural safeguards” for medical decisions for incompetent patients may require life-sustaining interventions absent clear evidence incompetent patient would refuse may require life-sustaining interventions absent clear evidence incompetent patient would refuse

38 Quinlan, Cruzan, Schiavo Nancy Cruzan case (5) Nancy Cruzan case (5) U.S. Supreme Court dissents U.S. Supreme Court dissents Brennan, Marshall, Blackmun Brennan, Marshall, Blackmun Freedom from unwanted treatments is fundamental right of competent and incompetent patients Freedom from unwanted treatments is fundamental right of competent and incompetent patients Decisions for incompetent patients by families or patient-designated surrogates Decisions for incompetent patients by families or patient-designated surrogates

39 Quinlan, Cruzan, Schiavo Nancy Cruzan case (6) Nancy Cruzan case (6) U.S. Supreme Court dissents U.S. Supreme Court dissents Stevens Stevens Constitution requires that patients’ best interest Constitution requires that patients’ best interest be followed be followed

40 Quinlan, Cruzan, Schiavo Nancy Cruzan case outcomes (6) Nancy Cruzan case outcomes (6) Established “right to die” - tube removed Established “right to die” - tube removed additional witnesses validated Cruzan wishes, physician decided to support feeding stop, Missouri withdrew court proceeding additional witnesses validated Cruzan wishes, physician decided to support feeding stop, Missouri withdrew court proceeding

41 Quinlan, Cruzan, Schiavo Nancy Cruzan case outcomes (7) Nancy Cruzan case outcomes (7) Support for legislation on advance directives Support for legislation on advance directives state laws on health proxies state laws on health proxies federal Patient Self Determination Act (1991) federal Patient Self Determination Act (1991) written advice upon admission written advice upon admission about right to advance directive about right to advance directive

42

43 Quinlan, Cruzan, Schiavo Theresa Shiavo case Theresa Shiavo case 27 year-old woman in PVS post cardiac arrest due to potassium abnormalities (1990) 27 year-old woman in PVS post cardiac arrest due to potassium abnormalities (1990) 1998 – husband requests court to discontinue feedings; parents oppose feeding tube removal 1998 – husband requests court to discontinue feedings; parents oppose feeding tube removal Trial court ruled clear evidence patient would want tube removed, decision appealed Trial court ruled clear evidence patient would want tube removed, decision appealed

44 Quinlan, Cruzan, Schiavo Theresa Shiavo case (2) Theresa Shiavo case (2) 2002 – overwhelming evidence patient in PVS with no potential treatment benefit 2002 – overwhelming evidence patient in PVS with no potential treatment benefit Florida appellate court denies appeals; Florida Supreme Court declines case Florida appellate court denies appeals; Florida Supreme Court declines case 2003 Florida legislature passes “Terri’s law” 2003 Florida legislature passes “Terri’s law” Governor authorized to stay removal of feeding tube challenged by family member Governor authorized to stay removal of feeding tube challenged by family member

45 Quinlan, Cruzan, Schiavo Theresa Shiavo case (3) Theresa Shiavo case (3) 2004 Florida court declares “Terri’s law” unconstitutional – Florida Supreme Court affirms decision 2004 Florida court declares “Terri’s law” unconstitutional – Florida Supreme Court affirms decision 2005 Congress passes legislation to move case to federal court – US Supreme Court refuses case 2005 Congress passes legislation to move case to federal court – US Supreme Court refuses case

46 Quinlan, Cruzan, Schiavo Theresa Shiavo case outcomes(4) Theresa Shiavo case outcomes(4) Feeding tube removed Feeding tube removed Written advance directive importance illustrated Written advance directive importance illustrated Family disagreements requiring court intervention highlighted Family disagreements requiring court intervention highlighted

47 Quinlan, Cruzan, Schiavo Theresa Shiavo case outcomes(4) Theresa Shiavo case outcomes(4) Third party interference in end-of-life decision- making occurred Third party interference in end-of-life decision- making occurred SC act to provide nutrition and hydration to incompetent patient without advanced directive proposed SC act to provide nutrition and hydration to incompetent patient without advanced directive proposed

48 Questions Does withholding/withdrawing care differ? Does withholding/withdrawing care differ? What is “futile care” (medically ineffective treatment)? What is “futile care” (medically ineffective treatment)?

49 Withholding/withdrawing Life-sustaining Treatments No ethical difference No ethical difference Courts consistently rule no difference Courts consistently rule no difference Passive vs active action Passive vs active action – patient wishes more important – patient wishes more important

50 Withholding/withdrawing Life-sustaining Treatments Autonomy of competent patient/surrogate Autonomy of competent patient/surrogate Informed consent justifies treatment Informed consent justifies treatment Informed refusal justifies foregoing or discontinuing treatments Informed refusal justifies foregoing or discontinuing treatments Decide by weighing benefits and burdens Decide by weighing benefits and burdens Minimize disability and pain Minimize disability and pain Relieve suffering Relieve suffering Avoid harm Avoid harm

51 Futile treatment Ordinary vs extraordinary treatment Ordinary vs extraordinary treatment – no difference – no difference Given patient preferences, Given patient preferences, examine benefit and burden of treatments examine benefit and burden of treatments ****Medically Ineffective Treatment**** ****Medically Ineffective Treatment**** provides little/ no benefit with undue burden provides little/ no benefit with undue burden ****futile**** ****futile****

52 Questions How does “Allow Natural Death” differ from “Do Not Resuscitate”? How does “Allow Natural Death” differ from “Do Not Resuscitate”? How does “distributive justice” affect treatment? How does “distributive justice” affect treatment?

53 AND versus DNR Do Not Resuscitate Do Not Resuscitate relays patient/family wish … no resuscitation attempts (CPR) start if patient dies relays patient/family wish … no resuscitation attempts (CPR) start if patient dies does not stop treatment…changes goal to comfort care does not stop treatment…changes goal to comfort care

54 AND versus DNR Do Not Resuscitate (2) Do Not Resuscitate (2) Negative statement generates confusion Negative statement generates confusion ? abandon care and stop all treatment ? abandon care and stop all treatment ? permission to terminate patient’s life. ? permission to terminate patient’s life. ? family guilt about not sufficiently helping patient ? family guilt about not sufficiently helping patient ? unrealistic expectation ? unrealistic expectation

55 AND versus DNR Allow Natural Death Allow Natural Death acknowledges patient is dying acknowledges patient is dying comfort measures becomes positive goal comfort measures becomes positive goal reflects language used in SC Declaration of Desire for Natural Death reflects language used in SC Declaration of Desire for Natural Death

56 AND versus DNR Allow Natural Death (2) Allow Natural Death (2) withholds or withdraws painful and burdensome treatments (including ventilator, artificial nutrition/hydration, feeding tube) withholds or withdraws painful and burdensome treatments (including ventilator, artificial nutrition/hydration, feeding tube)

57 AND versus DNR Using AND… Using AND… FULL SUPPORT FULL SUPPORT INTERMEDIATE SUPPORT - ALLOW NATURAL DEATH … medical procedures discontinued (vent, IV's, artificial nutrition/ hydration) but if patient arrests no code started INTERMEDIATE SUPPORT - ALLOW NATURAL DEATH … medical procedures discontinued (vent, IV's, artificial nutrition/ hydration) but if patient arrests no code started COMFORT SUPPORT - ALLOW NATURAL DEATH … all care aimed at comfort. COMFORT SUPPORT - ALLOW NATURAL DEATH … all care aimed at comfort.

58 Distributive Justice Allocation of health care resources Allocation of health care resources Fairness – get what deserved Fairness – get what deserved People equal ethically, treated equally; People equal ethically, treated equally; different ethically, treated differently different ethically, treated differently Ration time and resources according to need, probability and degree of benefit Ration time and resources according to need, probability and degree of benefit AMA Code of Ethics 2.03 Allocation of Limited Medical Resources AMA Code of Ethics 2.03 Allocation of Limited Medical Resources

59 Distributive Justice Adequate health care access Adequate health care access Democratic decision after public input during development and approval stages Democratic decision after public input during development and approval stages Monitor variations in care not medically explained to avoid ethnic/ racial disparity Monitor variations in care not medically explained to avoid ethnic/ racial disparity Adjust level of care over time assuring public acceptance Adjust level of care over time assuring public acceptance Equal access to basic care; equal consideration for discretionary care Equal access to basic care; equal consideration for discretionary care AMA Code of Ethics Provision of Adequate Health Care AMA Code of Ethics Provision of Adequate Health Care

60 Distributive Justice Barring disaster or prior societal decisions rationing healthcare resources… Barring disaster or prior societal decisions rationing healthcare resources… physician shall remain focused upon effective treatment of individual patient physician shall remain focused upon effective treatment of individual patient AMA Principles of Medical Ethics VIII AMA Principles of Medical Ethics VIII

61 Questions May physicians withdraw or withhold care without consent of the surrogate? May physicians withdraw or withhold care without consent of the surrogate? What must the physician do for the patient or surrogate if medical staff members ethically feel they can not continue “futile treatment”? What must the physician do for the patient or surrogate if medical staff members ethically feel they can not continue “futile treatment”?

62 Withdraw or Withhold Care without Consent of Surrogate No ethical obligation No ethical obligation to render medically ineffective treatment to render medically ineffective treatment Denial must be justified Denial must be justified by ethical principles and acceptable standards of care by ethical principles and acceptable standards of care AMA Code of Ethics Futile Care AMA Code of Ethics Futile Care

63 Stopping medically ineffective treatment without surrogate consent Obligations Obligations to shift care toward comfort/ closure to shift care toward comfort/ closure to not prolong dying without benefit to patient or legitimate interest to not prolong dying without benefit to patient or legitimate interest All health institutions need policy with due process All health institutions need policy with due process

64 Stopping medically ineffective treatment without surrogate consent Medically ineffective treatment policy (1) Medically ineffective treatment policy (1) Negotiate what constitutes medically ineffective treatment for patient, and limits for physician, surrogate, and institution Negotiate what constitutes medically ineffective treatment for patient, and limits for physician, surrogate, and institution Maximize joint decision-making between patient or proxy and physician Maximize joint decision-making between patient or proxy and physician

65 Stopping medically ineffective treatment without surrogate consent Medically ineffective treatment policy (2) Medically ineffective treatment policy (2) Negotiate disagreements for resolution, involving appropriate consultants Negotiate disagreements for resolution, involving appropriate consultants Involve ethics committee/ECS, if unable to resolve differences Involve ethics committee/ECS, if unable to resolve differences

66 Stopping medically ineffective treatment without surrogate consent Medically ineffective treatment policy (3) Medically ineffective treatment policy (3) If institutional review supports patient and physician unpersuaded, arrange transfer of care within institution If institutional review supports patient and physician unpersuaded, arrange transfer of care within institution If institutional review supports physician and patient/ proxy unpersuaded, seek transfer to another institution while medically supporting patient If institutional review supports physician and patient/ proxy unpersuaded, seek transfer to another institution while medically supporting patient If transfer not possible, need not offer treatment If transfer not possible, need not offer treatment AMA Code of Ethics Medical Futility in End-of- Life AMA Code of Ethics Medical Futility in End-of- Life

67 Case Study: 79 year old woman has aged gracefully Pneumonia successfully treated with brief use of ventilator and antibiotics; however patient develops progressive renal insufficiency. Pneumonia successfully treated with brief use of ventilator and antibiotics; however patient develops progressive renal insufficiency. A month goes by. Despite skin care patient develops large sacral decubitus. She develops increasing creatinine, edema, and dyspnea. A month goes by. Despite skin care patient develops large sacral decubitus. She develops increasing creatinine, edema, and dyspnea.

68 Case Study: 79 year old woman has aged gracefully Granddaughter appears "from off"; she remembers grandmother saying she wanted to "go quickly when her time came, but God would decide." Granddaughter appears "from off"; she remembers grandmother saying she wanted to "go quickly when her time came, but God would decide."

69 Questions Does euthanasia differ from terminal sedation? Does euthanasia differ from terminal sedation? What is the rule of “double effect”? What is the rule of “double effect”?

70 Euthanasia and Palliative Sedation Active euthanasia Active euthanasia Physician provides means and causes patient’s death Physician provides means and causes patient’s death Voluntary – patient requests; Voluntary – patient requests; involuntary – patient opposes; involuntary – patient opposes; nonvoluntary – patient lacks decision-making nonvoluntary – patient lacks decision-making

71 Euthanasia and Palliative Sedation Passive euthanasia or AND Passive euthanasia or AND Withholding or withdrawing treatment Withholding or withdrawing treatment Comparable to informed refusal of life-sustaining treatment by patient or surrogate; Comparable to informed refusal of life-sustaining treatment by patient or surrogate; respects patient autonomy respects patient autonomy underlying illness causes death underlying illness causes death

72 Euthanasia and Palliative Sedation Palliative sedation Palliative sedation High dose opiate or sedative with object to relieve suffering or dyspnea High dose opiate or sedative with object to relieve suffering or dyspnea May hasten death, but death not intended May hasten death, but death not intended Ensure excellent palliative care; Ensure excellent palliative care; decision to use informed and voluntary; decision to use informed and voluntary; no depression no depression

73 Rule of Double Effect Distinguishes between intended effect and effects foreseen but unintended Distinguishes between intended effect and effects foreseen but unintended Applicable to passive euthanasia and palliative sedation Applicable to passive euthanasia and palliative sedation Bad effect (respiratory depression/ death from opiates) not means of good effect (relief of suffering); unintended but foreseen bad effect proportional to intended good effect Bad effect (respiratory depression/ death from opiates) not means of good effect (relief of suffering); unintended but foreseen bad effect proportional to intended good effect

74 Questions Are dialysis or medical hydration and nutrition indicated in PVS? Are dialysis or medical hydration and nutrition indicated in PVS? What is the physiologic response to withdrawal of hydration? What is the physiologic response to withdrawal of hydration?

75 Medical Hydration and Nutrition or Dialysis in PVS? Value judgment… Value judgment… What is a human being? What is a human being? Decisions personal, Decisions personal, often involve religious beliefs of patient often involve religious beliefs of patient Ethically…may withdraw or withhold any intervention in accord with advance directive or surrogate decision Ethically…may withdraw or withhold any intervention in accord with advance directive or surrogate decision

76 Medical Hydration & Nutrition and Religion “Pope declares feeding tube removal immoral.” “Pope declares feeding tube removal immoral.” AP News March AP News March “There should be presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is sufficient benefit to outweigh the burdens involved to the patient.” “There should be presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is sufficient benefit to outweigh the burdens involved to the patient.” Ethical and Religious Directives for Catholic Health Care Services, 4 th ed, 2001 Ethical and Religious Directives for Catholic Health Care Services, 4 th ed, 2001

77 Medical Hydration & Nutrition and The Law Nancy Cruzan case (1990) Nancy Cruzan case (1990) Medical hydration & nutrition: treatment subject to refusal Medical hydration & nutrition: treatment subject to refusal State has right to “clear and convincing evidence” from patient about stopping medical hydration & nutrition State has right to “clear and convincing evidence” from patient about stopping medical hydration & nutrition

78 Medical Hydration & Nutrition and The Law Helga Wanglie case (1991) Helga Wanglie case (1991) Upheld right of husband to continue feeds in PVS though seen as nonbeneficial by health care team Upheld right of husband to continue feeds in PVS though seen as nonbeneficial by health care team

79 Medical Hydration & Nutrition and SC Law SC Health Care Power of Attorney SC Health Care Power of Attorney If no decision re tube feeding, agent has no legal authority to withhold / withdraw medical hydration and nutrition “necessary for comfort care” If no decision re tube feeding, agent has no legal authority to withhold / withdraw medical hydration and nutrition “necessary for comfort care” SC CODE SECTION Health care power of attorney

80 Medical Hydration and Nutrition Hunger rare at end of life Hunger rare at end of life Artificial hydration and nutrition can be harmful, increase suffering and prolong dying Artificial hydration and nutrition can be harmful, increase suffering and prolong dying If fluid/ food stopped, death from dehydration If fluid/ food stopped, death from dehydration – not starvation – not starvation

81 Physiology of Terminal Dehydration Increased endogenous endorphin release Increased endogenous endorphin release Azotemia and uremic encephalopahy Azotemia and uremic encephalopahy Decreased body fluids Decreased body fluids Urine output Urine output Pulmonary secretions/ edema Pulmonary secretions/ edema Gastric fluids, so decreased vomiting Gastric fluids, so decreased vomiting

82 Questions How do cultural and religious differences affect the concept of “good death”? How do cultural and religious differences affect the concept of “good death”? How may hospital chaplains contribute to ethics consultation? How may hospital chaplains contribute to ethics consultation?

83 “Good Death” Some cultural differences Some cultural differences Telling person she is dying may not be accepted Telling person she is dying may not be accepted Surrounded by family Surrounded by family Freedom from pain or indignity Freedom from pain or indignity Life preserved at any cost may have value Life preserved at any cost may have value

84 “Good Death” Some religious differences Some religious differences Rituals required differ as death approaches Rituals required differ as death approaches Faiths weigh ethical principles differently Faiths weigh ethical principles differently Accepting suffering may have value Accepting suffering may have value

85 “Good Death” How does your cultural tradition define a “good death”? How does your cultural tradition define a “good death”? What is your personal definition of a “good death”? What is your personal definition of a “good death”?

86 Chaplains Provide insight to clinicians about cultural and religious expectations Provide insight to clinicians about cultural and religious expectations Help patient, families, and surrogates clarify how their religious beliefs, needs, and desires affect treatment decisions Help patient, families, and surrogates clarify how their religious beliefs, needs, and desires affect treatment decisions Offer pastoral and emotional support regardless of faith traditions Offer pastoral and emotional support regardless of faith traditions

87 Case Study: 79 year old woman has aged gracefully Ethics consult service has met several times with the family and medical staff during the patient's hospital stay. ECS each time has offered treatment options. Ethics consult service has met several times with the family and medical staff during the patient's hospital stay. ECS each time has offered treatment options. After the last ECC visit, the family agreed with the recommendation for no dialysis, stopping tube feedings & hydration, and offering opiate sedation based upon apparent need for comfort. After the last ECC visit, the family agreed with the recommendation for no dialysis, stopping tube feedings & hydration, and offering opiate sedation based upon apparent need for comfort. The patient died peacefully days later. The patient died peacefully days later.

88 Question Have you completed a personal Health Care Power of Attorney? Have you completed a personal Health Care Power of Attorney?

89


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