1. Palliative Care After Injury Barry K. Bennett, LCSW, ACSW Adjunct Assistant Professor Department of Surgery

2. Background Of patients dying in hospitals, one-half are cared for in an ICU within 3 days of their death Of patients dying in hospitals, one-half are cared for in an ICU within 3 days of their death One third spend more than 10 days in ICU One third spend more than 10 days in ICU most deaths in ICUs are due to withdrawal of therapy most deaths in ICUs are due to withdrawal of therapy in ICUs most patients cannot communicate regarding death decisions in ICUs most patients cannot communicate regarding death decisions

3. Background Clinicians are oriented to saving lives rather than helping people die Clinicians are oriented to saving lives rather than helping people die families rate ICU clinician communication skills as more important than clinical skill families rate ICU clinician communication skills as more important than clinical skill > 50% of families do not understand the basic information on the patient’s prognosis, diagnosis and treatment after a conference > 50% of families do not understand the basic information on the patient’s prognosis, diagnosis and treatment after a conference

4. Background Medical patients with debilitating illness Medical patients with debilitating illness majority have thought about EOL care majority have thought about EOL care less than half have communicated it less than half have communicated it some patients want to make own decision some patients want to make own decision most want to do it in conjunction with physician most want to do it in conjunction with physician patients say they prefer to die at home patients say they prefer to die at home

5. Background most people with terminal illnesses die in the hospital most people with terminal illnesses die in the hospital aggressive care versus comfort care aggressive care versus comfort care not clear if patients wishes are valued or used not clear if patients wishes are valued or used hospitals end up providing EOL care hospitals end up providing EOL care Physicians, patients, and families may overestimate prognoses Physicians, patients, and families may overestimate prognoses

6. Life in the ICU Health care is to prolong life, restore health and relieve suffering Health care is to prolong life, restore health and relieve suffering Some patients never regain health or the ability to live independently Some patients never regain health or the ability to live independently Overall 30-40% of ICU patients will die Overall 30-40% of ICU patients will die Increased risk from Increased risk from Advanced age Advanced age Increased length of stay Increased length of stay Organ failure Organ failure

7. Cases 80% TBSA flame burn injury to a 45 year old, all full thickness, 24 y/o daughter who pt has not spoken to in seven years is the decision maker, no POA, pt lives with “significant other”, how should we handle consent? Should we treat? 80% TBSA flame burn injury to a 45 year old, all full thickness, 24 y/o daughter who pt has not spoken to in seven years is the decision maker, no POA, pt lives with “significant other”, how should we handle consent? Should we treat? 70% TBSA flame burn injury to a 34 year old female, self inflicted, history of chronic mental illness, survivable injury, should we treat? 70% TBSA flame burn injury to a 34 year old female, self inflicted, history of chronic mental illness, survivable injury, should we treat? 20% TBSA flame burn, grade III smoke inhalation injury to an 83 year old male with a history of COPD, has a living will, should we treat? 20% TBSA flame burn, grade III smoke inhalation injury to an 83 year old male with a history of COPD, has a living will, should we treat?

8. Legal Barriers-1 “foregoing life-sustaining treatment for patient’s without decisional capacity requires evidence of the patient’s actual wish” “foregoing life-sustaining treatment for patient’s without decisional capacity requires evidence of the patient’s actual wish” False False if surrogate relates it is the wish if surrogate relates it is the wish patient’s probable wish patient’s probable wish patient’s “best interest” when wishes not known” patient’s “best interest” when wishes not known” “substituted judgment standard” “substituted judgment standard”

9. Legal Barriers-2 “withholding or withdrawing artificial fluids and nutrition from terminally ill or permanently unconscious patients is illegal” “withholding or withdrawing artificial fluids and nutrition from terminally ill or permanently unconscious patients is illegal” False False fluids and nutrition are considered medical therapy fluids and nutrition are considered medical therapy

10. Legal Barriers-3 “risk management personnel must be consulted before life-sustaining treatment may be terminated” “risk management personnel must be consulted before life-sustaining treatment may be terminated” False False risk management personnel are to protect the hospital from legal risk, may not know the law risk management personnel are to protect the hospital from legal risk, may not know the law hospitals may have guidelines hospitals may have guidelines

11. Legal Barriers-4 “advanced directives must comply with specific forms and are not transferable between states” “advanced directives must comply with specific forms and are not transferable between states” False False specific forms may be more helpful specific forms may be more helpful even oral directives count even oral directives count an alert patient supersedes an existing AD an alert patient supersedes an existing AD

12. Legal Barriers-5 “If a physician prescribes or administers high doses of medication to relieve pain or other discomfort, and the result is death, he or she can be criminally prosecuted” “If a physician prescribes or administers high doses of medication to relieve pain or other discomfort, and the result is death, he or she can be criminally prosecuted” False False principle of double effect principle of double effect determined by intent determined by intent not physician assisted suicide or euthanasia not physician assisted suicide or euthanasia

13. Legal Barriers-6 “The 1997 Supreme Court outlawed physician- assisted suicide” “The 1997 Supreme Court outlawed physician- assisted suicide” False False decisions are up to the states decisions are up to the states only Oregon specifically allows PAS only Oregon specifically allows PAS some states have outlawed it some states have outlawed it most have no laws either way most have no laws either way

14. Legal and Ethical Background 1914 Justice Cardoza 1914 Justice Cardoza right of individuals to refuse care right of individuals to refuse care 1990 Danforth amendment- 1990 Danforth amendment- pts must be informed of rights to refuse care pts must be informed of rights to refuse care right to have advanced directives right to have advanced directives Dame Cicely Saunders and Elizabeth Kubler Ross Dame Cicely Saunders and Elizabeth Kubler Ross 1972 hearings on Death with Dignity 1972 hearings on Death with Dignity 1976 Karen Ann Quinlan Case 1976 Karen Ann Quinlan Case 1990 Nancy Cruzan case 1990 Nancy Cruzan case 1991 Patient Self-Determination Act 1991 Patient Self-Determination Act

15. Legal and Ethical Background 1991 Patient Self-Determination Act 1991 Patient Self-Determination Act patient autonomy patient autonomy informed decision making informed decision making truth telling truth telling control over the dying process control over the dying process assumes the individual is the decision maker assumes the individual is the decision maker

16. Has Surrogate Law in Absence of Advanced Directive

17. Key Differences in State Surrogate Laws Priority of Surrogates Spouse, adult child, parent, sibling (3) Spouse, adult child, parent, sibling (3) “nearest” or “other” relative (16) “nearest” or “other” relative (16) Include adult grandchildren (8) Include adult grandchildren (8) Include grandparents (5) Include grandparents (5) Include close friends (17) Include close friends (17) Include Aunts, Uncles, Nephews, Nieces (2) Include Aunts, Uncles, Nephews, Nieces (2)

18. Key Differences in State Surrogate Laws Priority of Surrogates In Michigan: “Immediate Family or Next of Kin priority not specified” In Michigan: “Immediate Family or Next of Kin priority not specified” In California, Domestic Partner #2 In California, Domestic Partner #2 In Indiana, A “Religious Superior” In Indiana, A “Religious Superior” In Mississippi, A LT Facility Employee In Mississippi, A LT Facility Employee In Florida, LCSW selected by bioethics committee In Florida, LCSW selected by bioethics committee

19. Illinois Surrogate Law Priority of Surrogates Spouse Spouse Adult child Adult child Parent Parent Sibling Sibling Adult grandchild Adult grandchild Close friend Close friend

20. Illinois Surrogate Law Limitations on Types of Decisions Mental health Mental health Must be considered “terminal” or “incurable” to withdraw care Must be considered “terminal” or “incurable” to withdraw care

21. Illinois Surrogate Law Disagreement Process Among Equal Priority Surrogates Majority Rules Majority Rules

22. Cases 80% TBSA flame burn injury to a 45 year old, all full thickness, 24 y/o daughter who pt has not spoken to in seven years is the decision maker, no POA, pt lives with “significant other”, how should we handle consent? Should we treat? 80% TBSA flame burn injury to a 45 year old, all full thickness, 24 y/o daughter who pt has not spoken to in seven years is the decision maker, no POA, pt lives with “significant other”, how should we handle consent? Should we treat? 70% TBSA flame burn injury to a 34 year old female, self inflicted, history of chronic mental illness, survivable injury, should we treat? 70% TBSA flame burn injury to a 34 year old female, self inflicted, history of chronic mental illness, survivable injury, should we treat? 20% TBSA flame burn, grade III smoke inhalation injury to an 83 year old male with a history of COPD, has a living will, should we treat? 20% TBSA flame burn, grade III smoke inhalation injury to an 83 year old male with a history of COPD, has a living will, should we treat?

23. Life in the ICU Artificial life support may deny some patients a peaceful and dignified death Artificial life support may deny some patients a peaceful and dignified death ICU two goals ICU two goals Save lives by intensive invasive therapy Save lives by intensive invasive therapy Provide a peaceful and dignified death Provide a peaceful and dignified death A good death should not be viewed as a failure A good death should not be viewed as a failure Death with peace and dignity Death with peace and dignity

24. Life in the ICU Physicians duty to Physicians duty to preserve life preserve life Ensure and acceptable quality of life Ensure and acceptable quality of life When medically futile, ensure comfortable and dignified death. When medically futile, ensure comfortable and dignified death.

25. Palliative Care What it is: What it is: active total care of patients whose disease is not responsive to curative treatment active total care of patients whose disease is not responsive to curative treatment effective management of pain, emotional, social, psychological, and spiritual support effective management of pain, emotional, social, psychological, and spiritual support What it is not: What it is not: physician assisted suicide physician assisted suicide euthanasia euthanasia homicide homicide

26. Palliative Care Affirms life and regards death as a normal process Affirms life and regards death as a normal process neither hastens or postpones death neither hastens or postpones death provides pain and symptom relief provides pain and symptom relief integrates psychological and spiritual aspects of care integrates psychological and spiritual aspects of care offers a support system for living actively until death offers a support system for living actively until death offers family support to cope with illness and bereavement offers family support to cope with illness and bereavement

27. Quality End of Life Good death: “One free from avoidable distress and suffering for patients, family, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards” Good death: “One free from avoidable distress and suffering for patients, family, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards”

28. Quality Assessment for the Dying Adequate pain management Adequate pain management Avoiding inappropriate prolongation of dying Avoiding inappropriate prolongation of dying Achieving a sense of control Achieving a sense of control Relieving burden Relieving burden Strengthening relationships with loved ones Strengthening relationships with loved ones

29. Discussions Introductions Introductions Identification of relevant decision makers Identification of relevant decision makers agenda setting agenda setting Information exchange Information exchange the future: prognosis, uncertainty, and hope the future: prognosis, uncertainty, and hope decisions to be made by clinicians and families decisions to be made by clinicians and families explicit discussions of dying and death explicit discussions of dying and death

30. Discussions Information exchange Information exchange patient’s baseline status, values patient’s baseline status, values clarification of terms, significance of facts clarification of terms, significance of facts Prognosis Prognosis survival survival quality of life quality of life uncertainty uncertainty

31. Discussions Decision making Decision making surrogates surrogates advanced directives advanced directives options and choices indicated, recommended, selected options and choices indicated, recommended, selected resuscitation and emergency care resuscitation and emergency care transition from curative to palliative care transition from curative to palliative care burdens and benefits burdens and benefits withdrawal of life-sustaining treatment withdrawal of life-sustaining treatment

32. Discussions Death and Dying Death and Dying what will it look like what will it look like symptoms, process of care, location, spiritual support symptoms, process of care, location, spiritual support directly raise possibility and likelihood of death directly raise possibility and likelihood of death Closing Closing give family control over timing, time for private conversations, implementation give family control over timing, time for private conversations, implementation assure patient comfort assure patient comfort discuss continuity, further discussions discuss continuity, further discussions

33. Communication Current studies show quality of communication is poor Current studies show quality of communication is poor early discussions with families shorten ICU stay prior to death early discussions with families shorten ICU stay prior to death giving the right data helps families make the informed decisions giving the right data helps families make the informed decisions poor communication is associated with increased malpractice suits poor communication is associated with increased malpractice suits

34. Communication Style Be direct about information in general and dying specifically Be direct about information in general and dying specifically elicit questions/solicit information elicit questions/solicit information confirm understanding confirm understanding summarize summarize allow discussion among family members allow discussion among family members express concern/value express concern/value acknowledge caring/complexity/difficulty acknowledge caring/complexity/difficulty ask about spiritual support ask about spiritual support acknowledge team members acknowledge team members

35. Communication Dying people know they are dying Dying people know they are dying fear abandonment/loneliness fear abandonment/loneliness want to talk to people they know want to talk to people they know resolve issues resolve issues families may feel uncomfortable, guilty, embarrassed families may feel uncomfortable, guilty, embarrassed may want to change subject or withdraw from patient’s situation may want to change subject or withdraw from patient’s situation dying patients want to talk to their doctor dying patients want to talk to their doctor

36. Communication Perception is selective Perception is selective stress may alter what families hear stress may alter what families hear can’t discern relevant information can’t discern relevant information verbal and nonverbal communication need to be congruent to establish trust verbal and nonverbal communication need to be congruent to establish trust culture may influence communication patterns culture may influence communication patterns be aware of cultural differences but do not avoid interactions be aware of cultural differences but do not avoid interactions

37. Communication Pitfalls Concerns regarding suffering Concerns regarding suffering importance of minimizing importance of minimizing minimize ongoing bodily injury in those who are dying minimize ongoing bodily injury in those who are dying pursue patient well-being separate from cure pursue patient well-being separate from cure emotional support and acceptance that patient is dying emotional support and acceptance that patient is dying maintain good relationship despite disagreement maintain good relationship despite disagreement

38. Futility Persistent vegetative states Persistent vegetative states less than 1% chance of success less than 1% chance of success continued dependence on intensive care continued dependence on intensive care VERY poorly defined VERY poorly defined mostly in non-trauma settings mostly in non-trauma settings does not include QUALITY of life does not include QUALITY of life best definition: “treatment that will only prolong the final stages of dying” best definition: “treatment that will only prolong the final stages of dying”

39. Demands for Treatment when care is Futile Viewed by providers as most important ethical problem Viewed by providers as most important ethical problem conflicts are protracted conflicts are protracted stressful for ICU staff and families stressful for ICU staff and families providers concerned about providers concerned about suffering suffering distressed families distressed families relationship breakdown relationship breakdown

40. Demands for Treatment when care is Futile Does not improve trust or decrease lawsuits Does not improve trust or decrease lawsuits may need to find another physician may need to find another physician family may not realize that patient is dying family may not realize that patient is dying may believe survival is still possible may believe survival is still possible is there provider consensus? is there provider consensus?

41. Ethical and Legal Concerns Patients, families and physicians find themselves considering clinical actions that are ethically and morally appropriate but raise legal concerns Patients, families and physicians find themselves considering clinical actions that are ethically and morally appropriate but raise legal concerns State laws and hospital protocols vary State laws and hospital protocols vary KNOW your state laws KNOW your state laws

42. Principles on Guiding Care at the End of Life Respect dignity of patient and caregivers Respect dignity of patient and caregivers be sensitive and respectful to patient/family’s wishes be sensitive and respectful to patient/family’s wishes use appropriate measures c/w patient’s choices or legal surrogate use appropriate measures c/w patient’s choices or legal surrogate ensure alleviation of pain and mgt of physical symptoms ensure alleviation of pain and mgt of physical symptoms recognize assess and address recognize assess and address psychological, social and spiritual problems psychological, social and spiritual problems ensure continuity of care provide access to therapies that may improve quality of life provide access to appropriate palliative and hospice care respect the patient’s right to refuse treatment recognize the physician’s responsibility to forego futile treatment