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Published in: Current Neurology and Neuroscience Reports 5/2010

01-09-2010

Consent in Impaired Populations

Author: Paul S. Appelbaum

Published in: Current Neurology and Neuroscience Reports | Issue 5/2010

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Abstract

Impairments in patients with dementia and other disorders affecting cognition may have a negative impact on their capacity to provide consent to treatment or to participation in research. A growing literature confirms that even patients with mild cognitive impairment may experience decrements in decisional abilities, findings that are more pronounced still in the early stages of dementia. However, most patients with mild dementia probably remain competent to provide a valid consent to treatment or research, and even some patients with moderate dementia may retain capacity in particular circumstances. Clinical evaluation of decisional competence has been augmented by structured approaches, including reliable instruments that may be used in the clinical setting. To avoid needlessly depriving patients of their right to make health care decisions, evaluations should be designed to maximize patient performance. However, when substitute consent is necessary, state laws generally provide a range of options, including advance directives and familial consent.
Literature
1.
go back to reference Berg JW, Appelbaum PS, Lidz CW, Parker L: Informed Consent: Legal Theory and Clinical Practice. edn 2. New York: Oxford University Press; 2001. Berg JW, Appelbaum PS, Lidz CW, Parker L: Informed Consent: Legal Theory and Clinical Practice. edn 2. New York: Oxford University Press; 2001.
2.
go back to reference Kim SYH, Karlawish JHT, Caine ED: Current state of research on decision-making competence of cognitively impaired elderly persons. Am J Geriatr Psychiatry 2002, 10:151–165.PubMed Kim SYH, Karlawish JHT, Caine ED: Current state of research on decision-making competence of cognitively impaired elderly persons. Am J Geriatr Psychiatry 2002, 10:151–165.PubMed
3.
go back to reference • Appelbaum PS: Assessment of patients’ competence to consent to treatment. N Engl J Med 2007, 357:1834–1840. This is a useful overview of issues related to the definition and assessment of competence, including suggested questions to guide assessment.CrossRefPubMed • Appelbaum PS: Assessment of patients’ competence to consent to treatment. N Engl J Med 2007, 357:1834–1840. This is a useful overview of issues related to the definition and assessment of competence, including suggested questions to guide assessment.CrossRefPubMed
4.
go back to reference Marson DC, McInturff B, Hawkins L, et al.: Consistency of physician judgments of capacity to consent in mild Alzheimer’s disease. J Am Geriatr Soc 1997, 45:453–457.PubMed Marson DC, McInturff B, Hawkins L, et al.: Consistency of physician judgments of capacity to consent in mild Alzheimer’s disease. J Am Geriatr Soc 1997, 45:453–457.PubMed
5.
go back to reference Marson DC, Earnst KS, Jamil F, et al.: Consistency of physicians’ legal standards and personal judgments of competency in patients with Alzheimer’s disease. J Am Geriatr Soc 2000, 48:911–918.PubMed Marson DC, Earnst KS, Jamil F, et al.: Consistency of physicians’ legal standards and personal judgments of competency in patients with Alzheimer’s disease. J Am Geriatr Soc 2000, 48:911–918.PubMed
6.
go back to reference Dunn LB, Mowrangi MA, Palmer BW, et al.: Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry 2006, 163:1323–1334.CrossRefPubMed Dunn LB, Mowrangi MA, Palmer BW, et al.: Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry 2006, 163:1323–1334.CrossRefPubMed
7.
go back to reference Karlawish JHT, Casarett DJ, James BD, et al.: The ability of persons with Alzheimer Disease (AD) to make a decision about taking an AD treatment. Neurology 2005, 64:1514–1519.CrossRefPubMed Karlawish JHT, Casarett DJ, James BD, et al.: The ability of persons with Alzheimer Disease (AD) to make a decision about taking an AD treatment. Neurology 2005, 64:1514–1519.CrossRefPubMed
8.
go back to reference Grisso T, Appelbaum PS: MacArthur Competence Assessment Tool for Treatment (MacCAT-T). Sarasota, FL: Professional Resource Press; 1998. Grisso T, Appelbaum PS: MacArthur Competence Assessment Tool for Treatment (MacCAT-T). Sarasota, FL: Professional Resource Press; 1998.
9.
go back to reference Lui VWC, Lam LCW, Luk DNY, et al.: Capacity to make treatment decisions in Chinese older persons with very mild dementia and mild Alzheimer’s disease. Am J Geriatr Psychiatry 2009, 17:428–436.CrossRefPubMed Lui VWC, Lam LCW, Luk DNY, et al.: Capacity to make treatment decisions in Chinese older persons with very mild dementia and mild Alzheimer’s disease. Am J Geriatr Psychiatry 2009, 17:428–436.CrossRefPubMed
10.
go back to reference Moye J, Karel MJ, Azar AR, Gurrera RJ: Capacity to consent to treatment: empirical comparison of three instruments in older adults with and without dementia. Gerontologist 2004, 44:166–175.PubMed Moye J, Karel MJ, Azar AR, Gurrera RJ: Capacity to consent to treatment: empirical comparison of three instruments in older adults with and without dementia. Gerontologist 2004, 44:166–175.PubMed
11.
go back to reference Petersen RC, Doody R, Kurz A, et al.: Current concepts in mild cognitive impairment. Arch Neurology 2001, 58:1985–1992.CrossRef Petersen RC, Doody R, Kurz A, et al.: Current concepts in mild cognitive impairment. Arch Neurology 2001, 58:1985–1992.CrossRef
12.
go back to reference Okonkwo O, Griffith HR, Belue K, et al.: Medical decision-making capacity in patients with mild cognitive impairment. Neurology 2007, 69:1528–1535.CrossRefPubMed Okonkwo O, Griffith HR, Belue K, et al.: Medical decision-making capacity in patients with mild cognitive impairment. Neurology 2007, 69:1528–1535.CrossRefPubMed
13.
go back to reference Marson DC, Ingram K, Cody H, Harrell LE: Assessing the competency of patients with Alzheimer’s disease under different legal standards. Arch Neurology 1995, 52:949–954. Marson DC, Ingram K, Cody H, Harrell LE: Assessing the competency of patients with Alzheimer’s disease under different legal standards. Arch Neurology 1995, 52:949–954.
14.
go back to reference Okonkwo OC, Griffith HR, Copeland JN, et al.: Medical decision-making capacity in mild cognitive impairment: a 3-year longitudinal study. Neurology 2008, 71:1474–1480.CrossRefPubMed Okonkwo OC, Griffith HR, Copeland JN, et al.: Medical decision-making capacity in mild cognitive impairment: a 3-year longitudinal study. Neurology 2008, 71:1474–1480.CrossRefPubMed
15.
go back to reference Huthwaite JS, Martin RC, Griffith HR, et al.: Declining medical decision-making capacity in mild AD: a two-year longitudinal study. Behav Sci Law 2006, 24:453–464.CrossRefPubMed Huthwaite JS, Martin RC, Griffith HR, et al.: Declining medical decision-making capacity in mild AD: a two-year longitudinal study. Behav Sci Law 2006, 24:453–464.CrossRefPubMed
16.
go back to reference Moye J, Karel MJ, Gurrera RJ, Azar AR. Neuropsychological predictors of decision-making capacity over 9 months in mild-to-moderate dementia. J Gen Intern Med 2006, 21:78–83.CrossRefPubMed Moye J, Karel MJ, Gurrera RJ, Azar AR. Neuropsychological predictors of decision-making capacity over 9 months in mild-to-moderate dementia. J Gen Intern Med 2006, 21:78–83.CrossRefPubMed
17.
go back to reference Vollmann J, Bauer A, Hoipfe HD, Helmchen H: Competence of mentally ill patients: a comparative empirical study. Psychol Med 2003, 33:1463–1471.CrossRefPubMed Vollmann J, Bauer A, Hoipfe HD, Helmchen H: Competence of mentally ill patients: a comparative empirical study. Psychol Med 2003, 33:1463–1471.CrossRefPubMed
18.
go back to reference Maxmin K, Cooper C, Potter L, Livingston G: Mental capacity to consent to treatment and admission decisions in older adult psychiatric inpatients. Int J Geriatr Psychiatry 2009, 24:1367–1375.CrossRefPubMed Maxmin K, Cooper C, Potter L, Livingston G: Mental capacity to consent to treatment and admission decisions in older adult psychiatric inpatients. Int J Geriatr Psychiatry 2009, 24:1367–1375.CrossRefPubMed
19.
go back to reference Gurrera RJ, Moye J, Karel MJ, et al.: Cognitive performance predicts treatment decisional abilities in mild to moderate dementia. Neurology 2006, 66:1367–1372.CrossRefPubMed Gurrera RJ, Moye J, Karel MJ, et al.: Cognitive performance predicts treatment decisional abilities in mild to moderate dementia. Neurology 2006, 66:1367–1372.CrossRefPubMed
20.
go back to reference Palmer BW, Jeste DV: Relationship of individual cognitive abilities to specific components of decisional capacity among middle-aged and older patients with schizophrenia. Schizophr Bull 2006, 32:98–106.CrossRefPubMed Palmer BW, Jeste DV: Relationship of individual cognitive abilities to specific components of decisional capacity among middle-aged and older patients with schizophrenia. Schizophr Bull 2006, 32:98–106.CrossRefPubMed
21.
go back to reference Marson DC, Chatterjee A, Ingram KK, Harrell LE: Toward a neurologic model of competency: cognitive predictors of capacity to consent in Alzheimer’s disease using three different legal standards. Neurology 1996, 46:666–672.PubMed Marson DC, Chatterjee A, Ingram KK, Harrell LE: Toward a neurologic model of competency: cognitive predictors of capacity to consent in Alzheimer’s disease using three different legal standards. Neurology 1996, 46:666–672.PubMed
22.
go back to reference Dymek MP, Atchison P, Harrell L, Marson DC: Competency to consent to medical treatment in cognitively impaired patients with Parkinson’s disease. Neurology 2001, 56:17–24.PubMed Dymek MP, Atchison P, Harrell L, Marson DC: Competency to consent to medical treatment in cognitively impaired patients with Parkinson’s disease. Neurology 2001, 56:17–24.PubMed
23.
go back to reference Appelbaum PS, Grisso T: The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). Sarasota, FL: Professional Resource Press; 2001. Appelbaum PS, Grisso T: The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). Sarasota, FL: Professional Resource Press; 2001.
24.
go back to reference Black BS, Brandt J, Rabins PV, et al.: Predictors of providing informed consent or assent for research participation in assisted living residents. Am J Geriatr Psychiatry 2008, 16:83–91.CrossRefPubMed Black BS, Brandt J, Rabins PV, et al.: Predictors of providing informed consent or assent for research participation in assisted living residents. Am J Geriatr Psychiatry 2008, 16:83–91.CrossRefPubMed
25.
go back to reference Warner J, McCarney R, Griffin M, et al.: Participation in dementia research: rates and correlates of capacity to give informed consent. J Med Ethics 2008, 34:167–170.CrossRefPubMed Warner J, McCarney R, Griffin M, et al.: Participation in dementia research: rates and correlates of capacity to give informed consent. J Med Ethics 2008, 34:167–170.CrossRefPubMed
26.
go back to reference Buckles VD, Powlishta KK, Palmer JL, et al.: Understanding of informed consent by demented individuals. Neurology 2003, 61:1662–1666.PubMed Buckles VD, Powlishta KK, Palmer JL, et al.: Understanding of informed consent by demented individuals. Neurology 2003, 61:1662–1666.PubMed
27.
go back to reference Karlawish J, Kim SYH, Knopman D, et al.: Interpreting the clinical significance of capacity scores for informed consent in Alzheimer disease clinical trials. Am J Geriatr Psychiatry 2008, 16:568–574.CrossRefPubMed Karlawish J, Kim SYH, Knopman D, et al.: Interpreting the clinical significance of capacity scores for informed consent in Alzheimer disease clinical trials. Am J Geriatr Psychiatry 2008, 16:568–574.CrossRefPubMed
28.
go back to reference Karlawish JHT, Casarett DJ, James BD: Alzheimer’s disease patients’ and caregivers’ capacity, competency, and reasons to enroll in an early-phase Alzheimer’s disease clinical trial. J Am Geriatr Soc 2002, 50:2019–2024.CrossRefPubMed Karlawish JHT, Casarett DJ, James BD: Alzheimer’s disease patients’ and caregivers’ capacity, competency, and reasons to enroll in an early-phase Alzheimer’s disease clinical trial. J Am Geriatr Soc 2002, 50:2019–2024.CrossRefPubMed
29.
go back to reference Kim SYH, Cox C, Caine ED: Impaired decision-making ability in subjects with Alzheimer’s disease and willingness to participate in research. Am J Psychiatry 2002, 159:797–802.CrossRefPubMed Kim SYH, Cox C, Caine ED: Impaired decision-making ability in subjects with Alzheimer’s disease and willingness to participate in research. Am J Psychiatry 2002, 159:797–802.CrossRefPubMed
30.
go back to reference Jefferson AL, Lambe S, Moser DJ, et al.: Decisional capacity for research participation in individuals with mild cognitive impairment. J Am Geriatr Soc 2008, 56:1236–1243.CrossRefPubMed Jefferson AL, Lambe S, Moser DJ, et al.: Decisional capacity for research participation in individuals with mild cognitive impairment. J Am Geriatr Soc 2008, 56:1236–1243.CrossRefPubMed
31.
go back to reference Schillerstrom JE, Rickenbacker D, Joshi KG, Royall DR: Executive function and capacity to consent to a noninvasive research protocol. Am J Geriatr Psychiatry 2007, 15:159–162.CrossRefPubMed Schillerstrom JE, Rickenbacker D, Joshi KG, Royall DR: Executive function and capacity to consent to a noninvasive research protocol. Am J Geriatr Psychiatry 2007, 15:159–162.CrossRefPubMed
32.
go back to reference Palmer BW, Dunn LB, Appelbaum PS, et al.: Assessment of capacity to consent to research among older persons with schizophrenia, Alzheimer disease, or diabetes mellitus. Arch Gen Psychiatry 2005, 62:726–733.CrossRefPubMed Palmer BW, Dunn LB, Appelbaum PS, et al.: Assessment of capacity to consent to research among older persons with schizophrenia, Alzheimer disease, or diabetes mellitus. Arch Gen Psychiatry 2005, 62:726–733.CrossRefPubMed
33.
go back to reference Griffith HR, Belue K, Sicola A, et al.: Impaired financial abilities in mild cognitive impairment: a direct assessment approach. Neurology 2003, 60:449–457.PubMed Griffith HR, Belue K, Sicola A, et al.: Impaired financial abilities in mild cognitive impairment: a direct assessment approach. Neurology 2003, 60:449–457.PubMed
34.
go back to reference Triebel KL, Martin R, Griffith HR, et al.: Declining financial capacity in mild cognitive impairment: a 1-year longitudinal study. Neurology 2009, 73:928–934.CrossRefPubMed Triebel KL, Martin R, Griffith HR, et al.: Declining financial capacity in mild cognitive impairment: a 1-year longitudinal study. Neurology 2009, 73:928–934.CrossRefPubMed
35.
go back to reference Allen RS, DeLaine SR, Chaplin WF, et al.: Advance care planning in nursing homes: correlates of capacity and possession of advance directives. Gerontologist 2003, 43:309–317.PubMed Allen RS, DeLaine SR, Chaplin WF, et al.: Advance care planning in nursing homes: correlates of capacity and possession of advance directives. Gerontologist 2003, 43:309–317.PubMed
36.
go back to reference Lai JM, Gill TM, Cooney LM, et al.: Everyday decision-making ability in older persons with cognitive impairment. Am J Geriatr Psychiatry 2008, 16:693–696.CrossRefPubMed Lai JM, Gill TM, Cooney LM, et al.: Everyday decision-making ability in older persons with cognitive impairment. Am J Geriatr Psychiatry 2008, 16:693–696.CrossRefPubMed
37.
go back to reference Appelbaum PS, Bonnie R, Karlawish J: The capacity to vote of persons with Alzheimer’s disease. Am J Psychiatry 2005, 162:2094–2100.CrossRefPubMed Appelbaum PS, Bonnie R, Karlawish J: The capacity to vote of persons with Alzheimer’s disease. Am J Psychiatry 2005, 162:2094–2100.CrossRefPubMed
38.
go back to reference Raymont V, Bingley W, Buchanan A, et al.: The prevalence and associations of mental incapacity in medical inpatients. Lancet 2004, 364:1421–1427.CrossRefPubMed Raymont V, Bingley W, Buchanan A, et al.: The prevalence and associations of mental incapacity in medical inpatients. Lancet 2004, 364:1421–1427.CrossRefPubMed
39.
go back to reference Kim SYH, Caine ED: Utility and limits of the Mini Mental State Examination in evaluating consent capacity in Alzheimer’s disease. Psychiatr Serv 2002, 53:1322–1324.CrossRefPubMed Kim SYH, Caine ED: Utility and limits of the Mini Mental State Examination in evaluating consent capacity in Alzheimer’s disease. Psychiatr Serv 2002, 53:1322–1324.CrossRefPubMed
40.
go back to reference Etchells E, Darzins P, Silberfeld M, et al.: Assessment of patient capacity to consent to treatment. J Gen Intern Med 1999, 14:27–34.CrossRefPubMed Etchells E, Darzins P, Silberfeld M, et al.: Assessment of patient capacity to consent to treatment. J Gen Intern Med 1999, 14:27–34.CrossRefPubMed
41.
go back to reference Grisso T, Appelbaum PS: Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York: Oxford University Press; 1998. Grisso T, Appelbaum PS: Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York: Oxford University Press; 1998.
42.
go back to reference Dunn LB, Jeste DV: Enhancing informed consent for research and treatment. Neuropsychopharmacol 2001, 24:595–607.CrossRef Dunn LB, Jeste DV: Enhancing informed consent for research and treatment. Neuropsychopharmacol 2001, 24:595–607.CrossRef
43.
go back to reference • Mittal D, Palmer D, Dunn L, et al.: Comparison of two enhanced consent procedures for patients with mild Alzheimer disease or mild cognitive impairment. Am J Geriatr Psychiatry 2007, 15:163–167. This is the only study to date demonstrating the utility of enhanced consent for improving decisional capacity among patients with MCI or AD.CrossRefPubMed • Mittal D, Palmer D, Dunn L, et al.: Comparison of two enhanced consent procedures for patients with mild Alzheimer disease or mild cognitive impairment. Am J Geriatr Psychiatry 2007, 15:163–167. This is the only study to date demonstrating the utility of enhanced consent for improving decisional capacity among patients with MCI or AD.CrossRefPubMed
44.
go back to reference Resnick HE, Schuur JD, Heineman J, et al.: Advance directives in nursing home residents aged greater than or equal to 65 years: United States 2004. Am J Hosp Palliat Care 2009, 25:476–482.CrossRef Resnick HE, Schuur JD, Heineman J, et al.: Advance directives in nursing home residents aged greater than or equal to 65 years: United States 2004. Am J Hosp Palliat Care 2009, 25:476–482.CrossRef
46.
go back to reference Kim SYH, Appelbaum PS, Jeste DV, Olin J: Proxy and surrogate consent in geriatric neuropsychiatric research: update and recommendations. Am J Psychiatry 2004, 161:797–806.CrossRefPubMed Kim SYH, Appelbaum PS, Jeste DV, Olin J: Proxy and surrogate consent in geriatric neuropsychiatric research: update and recommendations. Am J Psychiatry 2004, 161:797–806.CrossRefPubMed
47.
go back to reference • Saks ER, Dunn LB, Wimer J, et al.: Proxy consent to research: the legal landscape. Yale J Health Policy Law Ethics 2008, 8:37–92. This is a definitive review of the state of the law on proxy consent to research.PubMed • Saks ER, Dunn LB, Wimer J, et al.: Proxy consent to research: the legal landscape. Yale J Health Policy Law Ethics 2008, 8:37–92. This is a definitive review of the state of the law on proxy consent to research.PubMed
49.
go back to reference Kim SYH, Kim HM, Langa KM, et al.: Surrogate consent for dementia research: a national survey of older Americans. Neurology 2009, 72:149–155.CrossRefPubMed Kim SYH, Kim HM, Langa KM, et al.: Surrogate consent for dementia research: a national survey of older Americans. Neurology 2009, 72:149–155.CrossRefPubMed
50.
go back to reference Stroup S, Appelbaum P: The subject advocate: protecting the interests of participants with fluctuating decision making capacity. IRB 2003, 25(3):9–11.CrossRefPubMed Stroup S, Appelbaum P: The subject advocate: protecting the interests of participants with fluctuating decision making capacity. IRB 2003, 25(3):9–11.CrossRefPubMed
Metadata
Title
Consent in Impaired Populations
Author
Paul S. Appelbaum
Publication date
01-09-2010
Publisher
Current Science Inc.
Published in
Current Neurology and Neuroscience Reports / Issue 5/2010
Print ISSN: 1528-4042
Electronic ISSN: 1534-6293
DOI
https://doi.org/10.1007/s11910-010-0123-5

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