- Email: [email protected]
Patient Choice and Endy-of-Life Decisions
Letters and, while agitated, he received clozapine 175 mg in error, administered by mouth. Soon thereafter he became very confused and after 2 hours was obtunded. Examination revealed no spontaneous eye opening, no verbal response, and only a withdrawal motor response (Glasgow Coma Scale score: 6). He had pinpoint pupils, with sluggish reaction to light. He was transferred to the emergency room and monitored overnight. When the neurological examination was repeated 4 days later, his coma showed only slight improvement. His pupils were now reactive; he raised his eyebrows in response to voice, and he grimaced in response to painful stimuli. His muscle tone was rigid in both arms, but he was able to move all limbs. Occasional myoclonus was noted. The remainder of the examination, laboratory evaluation, and special investigations to rule out other causes of coma were unrevealing, except for a serum creatine kinase of 327 IU/L. By Day 9, he responded to verbal stimuli. Full consciousness and mobility were regained only by Day 14. This case is notable because the patient developed coma, a severe reaction, after the first dose of the lowlevel D2 antagonist clozapine. Given the sign of pinpoint pupils, it appears that the coma is not readily explained as part of an antihistaminic, anticholinergic adverse effect to clozapine. Other causes of coma were ruled out by examination and investigations, and the timing in relation to the clozapine dosing is highly suggestive. If patients with DLB require a neuroleptic (for example, for hallucinations that do not respond to a cholinesterase inhibitor4) then this case, and others, suggest that extreme caution be used regardless of the class of neuroleptics. Dosing
should be minimized, and careful monitoring should be instituted, preferably, perhaps, in the hospital.5 It should also be noted that previous response to atypical neuroleptics could be an unreliable indicator of future response. Joseph Sadek, M.D., B.Sc.Pharm. Department of Psychiatry, Dalhousie University, Halifax, Nova Scotia, Canada Kenneth Rockwood, M.D., FRCPC Center for the Health Care of the Elderly, Department of Medicine, Capital District Health Authority, 14215955 Veterans Memorial Lane, Halifax, Nova Scotia, Canada. e-mail: [email protected]
References 1. McKeith I, Galasko D, Kosaka K, et al: Consensus Guidelines for the Clinical and Pathological Diagnosis of Dementia With Lewy Body (DLB): Report of the Consortium on DLB International Workshop. Neurology 1996; 47:1113–1124 2. Burke WJ, Pfeiffer RF, McComb RD: Neuroleptic sensitivity to clozapine in dementia with Lewy bodies. J. Neuropsychiatry Clin Neurosci 1998; 10:227–229 3. McKeith I, Ballard CG, Harrison RW: Neuroleptic sensitivity to risperidone in Lewy body dementia (letter). Lancet 1995; 346(8976):699 4. Shea C, MacKnight C, Rockwood R: Donepezil for treatment of dementia with Lewy bodies: a case series of nine patients. Int Psychogeriatr 1998; 10:229– 239 5. Ballard C, Grace J, McKeith I, et al: Neuroleptic sensitivity in dementia with Lewy bodies and Alzheimer’s disease. Lancet 1998; 351(9108):1032–1033
Patient Choice and End-of-Life Decisions SIR: Dr. Blank and Dr. Sullivan’s commentary and special article on
Am J Geriatr Psychiatry 11:1, January-February 2003
patient choice in end-of-life decisions are important works that create an opportunity for the field of geriatric psychiatry to enter into the nation’s debate about end-of-life care.1,2 As psychiatric physicians, we often become consultants in evaluating a patient’s decisional capacity late in the course of a terminal illness, when the patient’s autonomy is compromised by the dying process. Sullivan’s primary argument was that “to respect the patient as a person, patient autonomy should be respected to the degree that it is intact.”1 Dr. Blank’s commentary provides “clinical context” and a vivid and highly personalized example of how an advance directive “helped bring his integrity into consideration” during the last days of her father-in-law’s life.2 The level of discourse surrounding patients’ decisional capacity and end-of-life care has risen sharply as the result of the SUPPORT study, in which a multidimensional intervention failed to improve five targeted end-of-life outcomes: the presence and timing of Do-Not-Resuscitate orders, patient–doctor communication, doctors’ knowledge of patient care preferences, number of intensivecare-unit days before death, and amount of pain.3 As part of the important debate that followed the study’s publication, the investigative team eventually questioned the fundamental assumptions of the study, asserting that the course of care for the seriously ill hospitalized patient is the result of individual, patientlevel decision-making that could be improved by better counseling and information. Instead, the course of care may well be shaped largely by how the care system is organized and by the interpersonal mean-
113
Letters ings ascribed to various cues and signals that shape the predictable patterns of care.4
Psychiatrists, and perhaps geriatric psychiatrists in particular, have important roles in this arena, as we are often asked to assist the family and treatment team in assessing decisional capacity of severely ill patients. To help frame our assessments, many of us use Grisso and Applebaum’s four-component construct of decisional abilities (understanding, appreciation, reason, and expressed choice).5 Kim and colleagues recommend using these four constructs to approach the assessment of competence in cognitively impaired patients.6 This involves a two-step process that assesses an individual’s decisional abilities, after which the evaluator makes a judgment about the person’s capacity or competence to make an autonomous decision. Kim and colleagues7 further emphasize that the judgment of the assessor requires both the assessment of an individual’s decisional abilities and the contextual factors surrounding a particular decision, such as a risk–benefit ratio, and the judgment style of the evaluator. Not well studied, however, has been the cognitive and behavioral psychology of decision-making regarding advance care planning. Several years ago, my colleagues and I conducted a cross-sectional survey of community-dwelling adults participating in a planned educational program to promote advance directives.8 To the best of our knowledge, this was the first such study examin-
114
ing whether health psychology variables, such as coping strategies, health locus of control, mood, and personal spiritual experiences influenced advance care planning for community-dwelling adults not under the stress of an acute illness. About 32% of the sample had an advance directive. In the multivariate analyses, variables associated with higher odds of possessing an advance directive included advancing age and white ethnicity. Characteristics associated with lower odds of having an advance directive were higher relative distancing coping scores and higher relative seeking-social-support scores. The bivariate analysis also found that individuals with higher planful problem-solving coping strategies were more likely to have an advance directive. Interestingly, health locus of control and religious/spiritual measures were not found to be predictive of having an advance directive.8 These data underscore the idea that variables other than health status are important factors in securing an advance directive, especially in a non-critically ill population, where patient autonomy is high. The data also underscore Sullivan’s assertion that improving the quality of care for dying individuals requires a much deeper analysis of individual choice and should include community values and the quality of care that is delivered in our health systems.2 The research settings and clinical conditions relevant to advance care planning should move beyond hospital or long-term care settings and into the community. It is in the community
where the field might discover more about the contextual, health psychology, and cultural preferences surrounding high-stakes and highly personalized decision-making on endof-life care. Christopher C. Colenda, M.D., M.P.H. Dean, College of Human Medicine, Texas A & M University System, Health Science Center, College Station, TX 77843-1114
References 1. Blank K: Respectful decisions at the end of life. Am J Geriatr Psychiatry 2002; 10:362–364 2. Sullivan MD: The illusion of patient choice in end-of-life decisions. Am J Geriatr Psychiatry 2002; 10:365–372 3. The SUPPORT Principal Investigators: A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT). JAMA 1995; 274:1591–1598 4. Lynn J, Arkes HR, Stevens M, et al: Rethinking the fundamental assumptions: SUPPORT’s implications for future reform. J Am Geriatr Soc 2000; 48:S214– S221 5. Grisso T, Appelbaum PS: Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York, Oxford University Press, 1998 6. Kim SYH, Caine ED, Currier GW, et al: Assessing the competence of persons with Alzheimer’s disease in providing informed consent for participation in research. Am J Psychiatry 2001; 158:712– 717 7. Kim SYH, Karlawich JHY, Caine ED: Current state of research on decision-making competence of cognitively impaired elderly persons. Am J Geriatr Psychiatry 2002; 10:151–165 8. Colenda CC, Jensen M, Foster J, et al: Variables predicting the completion of an advance directive by older adults. Annals of Long-Term Care 1998; 6:83–91
Am J Geriatr Psychiatry 11:1, January-February 2003
should be minimized, and careful monitoring should be instituted, preferably, perhaps, in the hospital.5 It should also be noted that previous response to atypical neuroleptics could be an unreliable indicator of future response. Joseph Sadek, M.D., B.Sc.Pharm. Department of Psychiatry, Dalhousie University, Halifax, Nova Scotia, Canada Kenneth Rockwood, M.D., FRCPC Center for the Health Care of the Elderly, Department of Medicine, Capital District Health Authority, 14215955 Veterans Memorial Lane, Halifax, Nova Scotia, Canada. e-mail: [email protected]
References 1. McKeith I, Galasko D, Kosaka K, et al: Consensus Guidelines for the Clinical and Pathological Diagnosis of Dementia With Lewy Body (DLB): Report of the Consortium on DLB International Workshop. Neurology 1996; 47:1113–1124 2. Burke WJ, Pfeiffer RF, McComb RD: Neuroleptic sensitivity to clozapine in dementia with Lewy bodies. J. Neuropsychiatry Clin Neurosci 1998; 10:227–229 3. McKeith I, Ballard CG, Harrison RW: Neuroleptic sensitivity to risperidone in Lewy body dementia (letter). Lancet 1995; 346(8976):699 4. Shea C, MacKnight C, Rockwood R: Donepezil for treatment of dementia with Lewy bodies: a case series of nine patients. Int Psychogeriatr 1998; 10:229– 239 5. Ballard C, Grace J, McKeith I, et al: Neuroleptic sensitivity in dementia with Lewy bodies and Alzheimer’s disease. Lancet 1998; 351(9108):1032–1033
Patient Choice and End-of-Life Decisions SIR: Dr. Blank and Dr. Sullivan’s commentary and special article on
Am J Geriatr Psychiatry 11:1, January-February 2003
patient choice in end-of-life decisions are important works that create an opportunity for the field of geriatric psychiatry to enter into the nation’s debate about end-of-life care.1,2 As psychiatric physicians, we often become consultants in evaluating a patient’s decisional capacity late in the course of a terminal illness, when the patient’s autonomy is compromised by the dying process. Sullivan’s primary argument was that “to respect the patient as a person, patient autonomy should be respected to the degree that it is intact.”1 Dr. Blank’s commentary provides “clinical context” and a vivid and highly personalized example of how an advance directive “helped bring his integrity into consideration” during the last days of her father-in-law’s life.2 The level of discourse surrounding patients’ decisional capacity and end-of-life care has risen sharply as the result of the SUPPORT study, in which a multidimensional intervention failed to improve five targeted end-of-life outcomes: the presence and timing of Do-Not-Resuscitate orders, patient–doctor communication, doctors’ knowledge of patient care preferences, number of intensivecare-unit days before death, and amount of pain.3 As part of the important debate that followed the study’s publication, the investigative team eventually questioned the fundamental assumptions of the study, asserting that the course of care for the seriously ill hospitalized patient is the result of individual, patientlevel decision-making that could be improved by better counseling and information. Instead, the course of care may well be shaped largely by how the care system is organized and by the interpersonal mean-
113
Letters ings ascribed to various cues and signals that shape the predictable patterns of care.4
Psychiatrists, and perhaps geriatric psychiatrists in particular, have important roles in this arena, as we are often asked to assist the family and treatment team in assessing decisional capacity of severely ill patients. To help frame our assessments, many of us use Grisso and Applebaum’s four-component construct of decisional abilities (understanding, appreciation, reason, and expressed choice).5 Kim and colleagues recommend using these four constructs to approach the assessment of competence in cognitively impaired patients.6 This involves a two-step process that assesses an individual’s decisional abilities, after which the evaluator makes a judgment about the person’s capacity or competence to make an autonomous decision. Kim and colleagues7 further emphasize that the judgment of the assessor requires both the assessment of an individual’s decisional abilities and the contextual factors surrounding a particular decision, such as a risk–benefit ratio, and the judgment style of the evaluator. Not well studied, however, has been the cognitive and behavioral psychology of decision-making regarding advance care planning. Several years ago, my colleagues and I conducted a cross-sectional survey of community-dwelling adults participating in a planned educational program to promote advance directives.8 To the best of our knowledge, this was the first such study examin-
114
ing whether health psychology variables, such as coping strategies, health locus of control, mood, and personal spiritual experiences influenced advance care planning for community-dwelling adults not under the stress of an acute illness. About 32% of the sample had an advance directive. In the multivariate analyses, variables associated with higher odds of possessing an advance directive included advancing age and white ethnicity. Characteristics associated with lower odds of having an advance directive were higher relative distancing coping scores and higher relative seeking-social-support scores. The bivariate analysis also found that individuals with higher planful problem-solving coping strategies were more likely to have an advance directive. Interestingly, health locus of control and religious/spiritual measures were not found to be predictive of having an advance directive.8 These data underscore the idea that variables other than health status are important factors in securing an advance directive, especially in a non-critically ill population, where patient autonomy is high. The data also underscore Sullivan’s assertion that improving the quality of care for dying individuals requires a much deeper analysis of individual choice and should include community values and the quality of care that is delivered in our health systems.2 The research settings and clinical conditions relevant to advance care planning should move beyond hospital or long-term care settings and into the community. It is in the community
where the field might discover more about the contextual, health psychology, and cultural preferences surrounding high-stakes and highly personalized decision-making on endof-life care. Christopher C. Colenda, M.D., M.P.H. Dean, College of Human Medicine, Texas A & M University System, Health Science Center, College Station, TX 77843-1114
References 1. Blank K: Respectful decisions at the end of life. Am J Geriatr Psychiatry 2002; 10:362–364 2. Sullivan MD: The illusion of patient choice in end-of-life decisions. Am J Geriatr Psychiatry 2002; 10:365–372 3. The SUPPORT Principal Investigators: A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT). JAMA 1995; 274:1591–1598 4. Lynn J, Arkes HR, Stevens M, et al: Rethinking the fundamental assumptions: SUPPORT’s implications for future reform. J Am Geriatr Soc 2000; 48:S214– S221 5. Grisso T, Appelbaum PS: Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York, Oxford University Press, 1998 6. Kim SYH, Caine ED, Currier GW, et al: Assessing the competence of persons with Alzheimer’s disease in providing informed consent for participation in research. Am J Psychiatry 2001; 158:712– 717 7. Kim SYH, Karlawich JHY, Caine ED: Current state of research on decision-making competence of cognitively impaired elderly persons. Am J Geriatr Psychiatry 2002; 10:151–165 8. Colenda CC, Jensen M, Foster J, et al: Variables predicting the completion of an advance directive by older adults. Annals of Long-Term Care 1998; 6:83–91
Am J Geriatr Psychiatry 11:1, January-February 2003