Legal Issues at the End of Life: Who Decides?

Transcription

1 Legal Issues at the End of Life: Who Decides? Dan Larriviere, MD, JD University of Virginia Schools of Law and Medicine Chair, American Academy of Neurology Ethics, Law and Humanities Committee

2 My Perspective Practicing Neurologist at a tertiary care center Former med mal defense attorney Former Greenwall Fellow in Bioethics and Health Policy, Johns Hopkins University it Chair, AAN Ethics, Law and Humanities Committee Member, UVA Hospital Ethics Committee 8/20/2009 AAAS Judicial Seminar Reno, NV 2

3 Objectives Be able to describe: 4 Different neurologic outcomes of coma Ethical and legal l principles i for surrogate decision making Ethically permissible decisions for continuing, limiting or withdrawing lifesustaining therapies (LST) 8/20/2009 AAAS Judicial Seminar Reno, NV 3

4 Outcomes from Severe Brain Injury Normal Brain Brain Injury Coma Brain Resuscitation 8/20/2009 AAAS Judicial Seminar Reno, NV 4

5 Outcomes from Severe Brain Injury Normal Brain Mild or No Disabality Brain Injury Moderate Disability Severe Disability Coma Vegetative State Brain Death 8/20/2009 AAAS Judicial Seminar Reno, NV 5

6 Neurologic Outcomes of Brain Coma Brain death Vegetative ti state t Disability Injury 8/20/2009 AAAS Judicial Seminar Reno, NV 6

7 Key Questions What are the clinical findings? Is ancillary testing useful or necessary? How certain is the diagnosis? i What is the time course? What is the prognosis? How certain is the prognosis? 8/20/2009 AAAS Judicial Seminar Reno, NV 7

8 Coma Unconscious Unresponsive except tfor reflex responses to stimuli. 8/20/2009 AAAS Judicial Seminar Reno, NV 8

9 Consciousness Laureys S, Owen AM, Schiff ND: Lancet Neurology 2004;3: /20/2009 AAAS Judicial Seminar Reno, NV 9

10 Anatomic Correlates: Coma 8/20/2009 AAAS Judicial Seminar Reno, NV 10

11 Brainstem 8/20/2009 AAAS Judicial Seminar Reno, NV 11

12 Brainstem 8/20/2009 AAAS Judicial Seminar Reno, NV 12

13 Reticular Activating System Midbrain Pons Medulla 8/20/2009 AAAS Judicial Seminar Reno, NV 13

14 Coma: Anatomic Correlates 8/20/2009 AAAS Judicial Seminar Reno, NV 14

15 Coma: Anatomic Correlates 8/20/2009 AAAS Judicial Seminar Reno, NV 15

16 Coma: Anatomic Correlates = Coma 8/20/2009 AAAS Judicial Seminar Reno, NV 16

17 8/20/2009 AAAS Judicial Seminar Reno, NV 17

18 8/20/2009 AAAS Judicial Seminar Reno, NV 18

19 = Coma 8/20/2009 AAAS Judicial Seminar Reno, NV 19

20 8/20/2009 AAAS Judicial Seminar Reno, NV 20

21 = Coma 8/20/2009 AAAS Judicial Seminar Reno, NV 21

22 Clinical Findings No eye opening No verbalization Reflexes present 8/20/2009 AAAS Judicial Seminar Reno, NV 22

23 Coma: Ancillary Testing CT or MRI Good at showing structural injury. E.g., stroke, missile injury. Not good for diffuse injury. E.g., toxic or metabolic coma. Electrophysiologic tests are abnormal. E.g., EEG, Evoked potentials 8/20/2009 AAAS Judicial Seminar Reno, NV 23

24 Coma: Certainty Very high if other diagnoses have been ruled-out. E.g., locked-in state or neuromuscular paralysis. 8/20/2009 AAAS Judicial Seminar Reno, NV 24

25 Coma: Time course and prognosis Time course: Acute Prognosis Depends on cause Toxic metabolic has best potential for recovery Structural injury has less potential Outcomes: death to normal 8/20/2009 AAAS Judicial Seminar Reno, NV 25

26 Outcomes from Severe Brain Injury Normal Brain Mild or No Disabality Brain Injury Moderate Disability Severe Disability Coma Vegetative State Brain Death 8/20/2009 AAAS Judicial Seminar Reno, NV 26

27 Origins of Brain Death Widespread use of artificial ventilation in the 1960s created a population of patients who survived the initial brain insult, but then progressed to a state of deep and permanent coma Could not take them off the ventilator Many thought ht this would constitute t killing 8/20/2009 AAAS Judicial Seminar Reno, NV 27

28 Brain Death So, we redefined death to include death by neurologic criteria or brain death Defined as irreversible cessation of all brain function, including brainstem. Brain death is not vegetative state or coma It is death 8/20/2009 AAAS Judicial Seminar Reno, NV 28

29 Irreversible Demonstrated by performing two exams, with at least six hours between the first and second exams. If the exams are consistent, brain death is declared. 8/20/2009 AAAS Judicial Seminar Reno, NV 29

30 Whole Brain 8/20/2009 AAAS Judicial Seminar Reno, NV 30

31 Clinical Findings No eye opening No pupillary light reflex No reflex eye movements or corneal reflex No grimace to pain No cough or gag reflexes No breathing when ventilator is removed No responses or reflexes Nothing 8/20/2009 AAAS Judicial Seminar Reno, NV 31

32 Ancillary Tests CT or MRI demonstrates severe injury EEG electrical silence Investigate t other possible causes for unresponsiveness Hypothermia Spinal cord injury or neuromuscular paralysis Sedatives, narcotics, anesthetics, intoxication Circulatory shock (infection) 8/20/2009 AAAS Judicial Seminar Reno, NV 32

33 Certainty High if exam is performed by a properly trained individual AAN Practice Parameter Neurology 1995;45: /20/2009 AAAS Judicial Seminar Reno, NV 33

34 Time Course Usually sudden and early in course of illness but may occur days/weeks after the initial injury Once suspected on clinical grounds, usually confirmed/refuted within 24hrs. 8/20/2009 AAAS Judicial Seminar Reno, NV 34

35 Prognosis The patient is dead Cardiopulmonary function is being supported by ICU interventions Body is warm, chest rises and falls Appearance is deceiving and can create emotional conflicts for families 8/20/2009 AAAS Judicial Seminar Reno, NV 35

36 Outcomes from Severe Brain Injury Normal Brain Mild or No Disabality Brain Injury Moderate Disability Severe Disability Coma Vegetative State Brain Death 8/20/2009 AAAS Judicial Seminar Reno, NV 36

37 Arousal and Awareness Laureys S, Owen AM, Schiff ND: Lancet Neurology 2004;3: /20/2009 AAAS Judicial Seminar Reno, NV 37

38 Definition of PVS The vegetative state is a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles with either complete or partial preservation of hypothalamic and brainstem autonomic functions. The condition may be transient, marking a stage in the recovery from severe acute or chronic brain damage, or permanent, as a consequence of the failure to recover from such injuries. The Multi-Society Task Force on PVS: NEJM 330: , /20/2009 AAAS Judicial Seminar Reno, NV 38

39 Definition of PVS The vegetative state is a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles with either complete or partial preservation of hypothalamic and brainstem autonomic functions. The condition may be transient, marking a stage in the recovery from severe acute or chronic brain damage, or permanent, as a consequence of the failure to recover from such injuries. The Multi-Society Task Force on PVS: NEJM 330: , /20/2009 AAAS Judicial Seminar Reno, NV 39

40 PVS Clinical Findings The distinguishing g feature of the vegetative state is an irregular but cyclic state of circadian sleeping and waking unaccompanied by any behaviorally detectable expression of self- awareness, specific recognition of external stimuli, or consistent evidence of attention or intention or learned responses. Patients in a vegetative state are usually not immobile. They may move the trunk or limbs in meaningless ways. They may occasionally smile, and a few may even shed tears; some utter grunts, or, on rare occasions, moan or scream. The Multi-Society Task Force on PVS: NEJM 330: , /20/2009 AAAS Judicial Seminar Reno, NV 40

41 PVS Clinical Findings The distinguishing g feature of the vegetative state is an irregular but cyclic state of circadian sleeping and waking unaccompanied by any behaviorally detectable expression of self- awareness, specific recognition of external stimuli, or consistent evidence of attention or intention or learned responses. Patients in a vegetative state are usually not immobile. They may move the trunk or limbs in meaningless ways. They may occasionally smile, and a few may even shed tears; some utter grunts, or, on rare occasions, moan or scream. The Multi-Society Task Force on PVS: NEJM 330: , /20/2009 AAAS Judicial Seminar Reno, NV 41

42 PVS Clinical Findings The distinguishing g feature of the vegetative state is an irregular but cyclic state of circadian sleeping and waking unaccompanied by any behaviorally detectable expression of self- awareness, specific recognition of external stimuli, or consistent evidence of attention or intention or learned responses. Patients in a vegetative state are usually not immobile. They may move the trunk or limbs in meaningless ways. They may occasionally smile, and a few may even shed tears; some utter grunts, or, on rare occasions, moan or scream. The Multi-Society Task Force on PVS: NEJM 330: , /20/2009 AAAS Judicial Seminar Reno, NV 42

43 PVS Ancillary Tests CT or MRI may show diffuse injury. Over time, may show atrophy EEG slowing and lack of reactivity PET scans or functional MRI (fmri) show reduced brain metabolism ~ 40-50% NOTE: Ancillary studies alone do not prove or disprove diagnosis of PVS PVS is a clinical diagnosis based on repeated examinations 8/20/2009 AAAS Judicial Seminar Reno, NV 43

44 PVS Diagnostic Certainty Depends on reliability of neurologic exam Accurately distinguishing purposeful behavior from reflexes, repetitive sequences or random patterns Requires skill, judgment and impartiality Requires repeated examinations over time Cannot be done by looking at the patient Cannnot be done with a single examination 8/20/2009 AAAS Judicial Seminar Reno, NV 44

45 PVS Time Course Can occur just days after a coma Can be a transitional state in course of recovery; or Can be the end state, which is when it s described d as persistent t vegetative ti state t 8/20/2009 AAAS Judicial Seminar Reno, NV 45

46 Prognosis related to cause and Traumatic injury duration Recovery of consciousness after 12 months is unlikely Recovery after 12 months exceedingly rare and almost always associated with severe disability. Nontraumatic ti injury Recovery of consciousness after 3 months is rare Recover does occur, but rare and associated with moderate to severe disability. The Multi-Society Task Force on PVS: NEJM 330: , /20/2009 AAAS Judicial Seminar Reno, NV 46

47 The Multi-Society Task Force on PVS: NEJM 330: , /20/2009 AAAS Judicial Seminar Reno, NV 47

48 Outcomes from Severe Brain Injury Normal Brain Mild or No Disabality Brain Injury Moderate Disability Severe Disability Coma Minimally conscious state Vegetative State Brain Death 8/20/2009 AAAS Judicial Seminar Reno, NV 48

49 Arousal and Awareness Laureys S, Owen AM, Schiff ND: Lancet Neurology 2004;3: /20/2009 AAAS Judicial Seminar Reno, NV 49

50 Minimally Conscious State (MCS) A condition of severely altered consciousness in which minimal but definite behavioral evidence of self or environmental awareness is demonstrated. MCS is distinguished from VS by the presence of behaviors associated with conscious awareness. In MCS, behaviors associated with cognitive awareness occur inconsistently, but are reproducible or sustained long enough to be differentiated from reflexive behavior. 8/20/2009 AAAS Judicial Seminar Reno, NV 50

51 Minimally Conscious State (MCS) Limited but clearly discernible evidence of self or environmental awareness must be demonstrated on a reproducible or sustained basis by one or more of the following behaviors: Following simple commands Gestural or verbal yes/no responses (regardless of accuracy) Intelligible verbalization Purposeful behavior, including movements or affective behaviors that occur in contingent relation to relevant environmental stimuli and are not due to reflexive activity 8/20/2009 AAAS Judicial Seminar Reno, NV 51

52 MCS - Ancillary Tests The topic of ongoing research, but PET and fmri are starting to reveal important findings. 8/20/2009 AAAS Judicial Seminar Reno, NV 52

53 PET scan differences in cortical activation i Laureys S, Owen AM, Schiff ND: Lancet Neurology 2004;3: /20/2009 AAAS Judicial Seminar Reno, NV 53

54 MCS Diagnostic Certainty and Certainty To be determined Time Course Researchers assert there are many patients thought to be in PVS who are actually in MCS Time Course Similar to PVS Months to years 8/20/2009 AAAS Judicial Seminar Reno, NV 54

55 MCS - Prognosis and Certainty Yet to be determined As with PVS, MCS can exist as a transitional or permanent state Some patients with MCS have gone on to greater degrees of recovery Although it is not known how many patients will emerge from MCS 12 months after injury, most patients in MCS for this length of time remain severely e e disabled As with VS, the likelihood of significant functional improvement diminishes over time. 8/20/2009 AAAS Judicial Seminar Reno, NV 55

56 Decision Making 8/20/2009 AAAS Judicial Seminar Reno, NV 56

57 How do we determine who speaks for these patients? Advance directive Health care POA Surrogate decision maker Guardian Spouse Adult children Parents Siblings +/- life partner, close friend, etc If no surrogate: Attending physician, ethics committee, guardian 8/20/2009 AAAS Judicial Seminar Reno, NV 57

58 Basis for deciding? Prior expressed wishes Substituted judgement Best interests t 8/20/2009 AAAS Judicial Seminar Reno, NV 58

59 Context for decision making Must define the goals of care before embarking on a therapeutic path Treatments are means to and end If you haven t defined the end, treatments are pointless The ship of medicine is hard to stop once it gets going better to know where you re going before you start 8/20/2009 AAAS Judicial Seminar Reno, NV 59

60 Goals of Care Establishing goals of care means: Understanding what the patient hopes to be or become by the end of their treatment the desired outcome If we think we can achieve this goal, we continue appropriate treatments (i.e. the means to the end) Ask also what the patient would be willing to endure, and for how long 8/20/2009 AAAS Judicial Seminar Reno, NV 60

61 Treatment using GOC is an iterative process Define ends and the means necessary to achieve them Treat, assess for progress. If none, meet, possibly re-define goals, etc. 8/20/2009 AAAS Judicial Seminar Reno, NV 61

62 Continuation or Withdrawal of life- sustaining i therapies Normal Brain Mild or No Disabality Brain Injury Moderate Disability Severe Disability Coma Minimally conscious state Vegetative State Brain Death Withdrawal of LST Death or survival 8/20/2009 AAAS Judicial Seminar Reno, NV 62

63 What treatment decisions can we make? Depends on the prognosis and timing Most state laws and advance directives permit withdrawal of LST for end-stage conditions or instances where treatment is medically ineffective (futile) See Larriviere & Bonnie. Neurology 2006; 66; for a review of state laws NOTE: No law addresses MCS, and you may anticipate that cases will come to court 8/20/2009 AAAS Judicial Seminar Reno, NV 63

64 Therapeutic trials For the most part, health professionals and families have become accustomed to the fact they can make these decisions Most of them occur during hospital stay for the acute illness or injury But what about families who want to wait and watch to see if the patient recovers? This would happen outside the acute care hospital and most likely in a chronic care facility weeks and months later This is what Michael Schiavo did. 8/20/2009 AAAS Judicial Seminar Reno, NV 64

65 Therapeutic trials If the goal of treating patients is to allow as many of them to improve as possible, while simultaneously respecting their autonomy by way of surrogates or living wills Then it is short-sighted to condemn decisions to attempt a therapeutic trial It is much easier to withdraw LST in the ICU than to wait and hope and then decide to stop 8/20/2009 AAAS Judicial Seminar Reno, NV 65

66 Landscape of end of life decision making - Premise In re Jobes 108 N.J. 394(1987) Courts are not the proper place to resolve the agonizing personal problems that underlie these cases. Our legal system cannot replace the more intimate struggle that must be borne by the patient, those caring for the patient, and those who care about the patient. 8/20/2009 AAAS Judicial Seminar Reno, NV 66

67 Landscape of end of life decision making When there is broad agreement among decision makers concerning what the patient would have wanted; or When there is quality evidence about what the patient would have wanted (e.g., advance directive); then These issues are resolved at the bedside 8/20/2009 AAAS Judicial Seminar Reno, NV 67

68 Landscape of end of life decision making When there is disagreement among family members or there are no decision-makers to be found, then Most attendings consult the hospital ethics committee and/or risk management attorneys; if they are unable to resolve the conflict, then We ask the courts for guidance. 8/20/2009 AAAS Judicial Seminar Reno, NV 68

69 Thank you for your kind attention 8/20/2009 AAAS Judicial Seminar Reno, NV 69