Assessment of decision-making capacity in adults
- Jason Karlawish, MD
Jason Karlawish, MD
- Professor of Medicine
- Medical Ethics and Health Policy
- University of Pennsylvania
- Section Editor
- Steven T DeKosky, MD, FAAN, FACP, FANA
Steven T DeKosky, MD, FAAN, FACP, FANA
- Section Editor — Dementia
- Professor of Neurology
- Deputy Director
- McKnight Brain Institute
- University of Florida College of Medicine
- Deputy Editors
- April F Eichler, MD, MPH
April F Eichler, MD, MPH
- Senior Deputy Editor — UpToDate
- Deputy Editor — Neurology and Sleep Medicine
- Assistant Professor of Neurology
- Harvard Medical School
- David Solomon, MD
David Solomon, MD
- Deputy Editor — Psychiatry
- Clinical Associate Professor
- Brown University School of Medicine
The capacity to make one’s own decisions is fundamental to the ethical principle of respect for autonomy and is a key component of informed consent to medical treatment. Determining whether an individual has adequate capacity to make decisions is therefore an inherent aspect of all clinician-patient interactions.
The main determinant of capacity is cognition, and any condition or treatment that affects cognition may potentially impair decision-making capacity. In the presence of cognitive impairment from any cause, determining whether a patient has adequate capacity is critical to striking the proper balance between respecting patient autonomy and acting in a patient’s best interest. A skillful capacity assessment can also help determine the severity of a patient’s cognitive impairments and improve the effectiveness of conversations with patients and their families.
These skills are especially important in the care of adult patients who have diseases that impair cognition. Patients with traumatic brain injury, psychiatric illnesses (eg, schizophrenia, bipolar disorder, and unipolar major depression), and neurodegenerative diseases (eg, Alzheimer disease and Parkinson disease) are at risk for impaired capacity. Hospitalized patients and older adults are also at risk due to cognitive impairment from chronic diseases, cognitive aging, and delirium.
This topic reviews the definition of capacity, predictors of impaired capacity, when and how to assess capacity, and how to incorporate an assessment of capacity into clinical judgments about the ability of patients to choose their treatment. Informed consent, advance care planning, advance directives, and medical decision making at the end of life are discussed separately. (See "Informed procedural consent" and "Advance care planning and advance directives" and "Ethical issues in palliative care" and "Legal aspects in palliative and end of life care in the United States".)
Capacity and competency — Capacity describes a person’s ability to a make a decision. In a medical context, capacity refers to the ability to utilize information about an illness and proposed treatment options to make a choice that is congruent with one’s own values and preferences.
- Grisso T, Appelbaum PS.. Abilities related to competence. In: Assessing competence to consent to treatment A guide for physicians and other health professionals, Oxford University Press, New York 1998. p.31.
- Siegel AM, Barnwell AS, Sisti DA. Assessing decision-making capacity: a primer for the development of hospital practice guidelines. HEC Forum 2014; 26:159.
- Faden RR, Beauchamp TL.. Part III. A Theory of Informed Consent. In: A History and Theory of Informed Consent, Oxford University Press, New York 1986. p.235.
- Lai JM, Karlawish J. Assessing the capacity to make everyday decisions: a guide for clinicians and an agenda for future research. Am J Geriatr Psychiatry 2007; 15:101.
- Grisso T, Appelbaum PS. Comparison of standards for assessing patients' capacities to make treatment decisions. Am J Psychiatry 1995; 152:1033.
- Kim SY, Karlawish JH, Kim HM, et al. Preservation of the capacity to appoint a proxy decision maker: implications for dementia research. Arch Gen Psychiatry 2011; 68:214.
- Karlawish JH, 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.
- Appelbaum PS, Bonnie RJ, Karlawish JH. The capacity to vote of persons with Alzheimer's disease. Am J Psychiatry 2005; 162:2094.
- 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.
- Karlawish JH, 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.
- Kim SYH. Instruments for Assessing Treatment Consent Capacity. In: Evaluation of Capacity to Consent to Treatment and Research, Oxford University Press, New York 2010. p.61.
- Dymek M, Marson D, Harrell L. Factor structure of capacity to consent to medical treatment in patients with Alzheimer's disease: An exploratory study. Journal of Forensic Neuropsychology 1999; 1:27.
- Karlawish J, Cary M, Moelter ST, et al. Cognitive impairment and PD patients' capacity to consent to research. Neurology 2013; 81:801.
- Martin RC, Okonkwo OC, Hill J, et al. Medical decision-making capacity in cognitively impaired Parkinson's disease patients without dementia. Mov Disord 2008; 23:1867.
- 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.
- Griffith HR, Dymek MP, Atchison P, et al. Medical decision-making in neurodegenerative disease: mild AD and PD with cognitive impairment. Neurology 2005; 65:483.
- Jeste DV, Depp CA, Palmer BW. Magnitude of impairment in decisional capacity in people with schizophrenia compared to normal subjects: an overview. Schizophr Bull 2006; 32:121.
- Grisso T, Appelbaum PS. The MacArthur Treatment Competence Study. III: Abilities of patients to consent to psychiatric and medical treatments. Law Hum Behav 1995; 19:149.
- Appelbaum PS, Grisso T, Frank E, et al. Competence of depressed patients for consent to research. Am J Psychiatry 1999; 156:1380.
- Boettger S, Bergman M, Jenewein J, Boettger S. Assessment of decisional capacity: Prevalence of medical illness and psychiatric comorbidities. Palliat Support Care 2015; 13:1275.
- Triebel KL, Martin RC, Novack TA, et al. Treatment consent capacity in patients with traumatic brain injury across a range of injury severity. Neurology 2012; 78:1472.
- Triebel KL, Martin RC, Novack TA, et al. Recovery over 6 months of medical decision-making capacity after traumatic brain injury. Arch Phys Med Rehabil 2014; 95:2296.
- Steward KA, Gerstenecker A, Triebel KL, et al. Twelve-month recovery of medical decision-making capacity following traumatic brain injury. Neurology 2016; 87:1052.
- Dreer LE, Devivo MJ, Novack TA, et al. Cognitive Predictors of Medical Decision-Making Capacity in Traumatic Brain Injury. Rehabil Psychol 2008; 53:486.
- Marson DC, Dreer LE, Krzywanski S, et al. Impairment and partial recovery of medical decision-making capacity in traumatic brain injury: a 6-month longitudinal study. Arch Phys Med Rehabil 2005; 86:889.
- Raymont V, Bingley W, Buchanan A, et al. Prevalence of mental incapacity in medical inpatients and associated risk factors: cross-sectional study. Lancet 2004; 364:1421.
- Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med 2010; 362:1211.
- Appelbaum PS. Clinical practice. Assessment of patients' competence to consent to treatment. N Engl J Med 2007; 357:1834.
- 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.
- Marson DC, Earnst KS, Jamil F, et al. Consistency of physicians' legal standard and personal judgments of competency in patients with Alzheimer's disease. J Am Geriatr Soc 2000; 48:911.
- Etchells E, Darzins P, Silberfeld M, et al. Assessment of patient capacity to consent to treatment. J Gen Intern Med 1999; 14:27.
- Grisso T, Appelbaum PS. Using the MacArthur Competence Assessment Tool - Treatment. In: Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals, Oxford University Press, New York 1998. p.101.
- Marson DC, Ingram KK, Cody HA, Harrell LE. Assessing the competency of patients with Alzheimer's disease under different legal standards. A prototype instrument. Arch Neurol 1995; 52:949.
- Kim SYH. Making Sense of the Variety of Standards. In: Evaluation of Capacity to Consent to Treatment and Research, Oxford University Press, New York 2010. p.26.
- Kim SY, Caine ED, Swan JG, Appelbaum PS. Do clinicians follow a risk-sensitive model of capacity-determination? An experimental video survey. Psychosomatics 2006; 47:325.
- Rubright J, Sankar P, Casarett DJ, et al. A memory and organizational aid improves Alzheimer disease research consent capacity: results of a randomized, controlled trial. Am J Geriatr Psychiatry 2010; 18:1124.
- Dunn LB, Lindamer LA, Palmer BW, et al. Improving understanding of research consent in middle-aged and elderly patients with psychotic disorders. Am J Geriatr Psychiatry 2002; 10:142.
- Buchanan A, Brock DW. Deciding for Others: The Ethics of Surrogate Decision Making, Cambridge University Press, Cambridge 1989.
- Hirschman KB, Kapo JM, Karlawish JH. Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? Am J Geriatr Psychiatry 2006; 14:659.
- Capacity and competency
- Informed consent
- How capacity differs from cognition and function
- FACTORS ASSOCIATED WITH IMPAIRED CAPACITY
- General principles
- High risk groups
- - Neurodegenerative disease
- - Psychiatric disorders
- - Traumatic brain injury
- - Hospitalized adults
- - End of life
- WHEN TO ASSESS CAPACITY
- HOW TO ASSESS CAPACITY
- The decision-making abilities
- - Understanding
- - Expressing a choice
- - Appreciation
- - Reasoning
- Semi-structured patient interview
- Validated instruments
- - Patient refuses a capacity assessment
- - Family does not agree with clinician’s assessment
- HOW THE CAPACITY ASSESSMENT INFORMS CLINICAL JUDGMENT
- WHAT TO DO WHEN A PATIENT LACKS CAPACITY