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Decision-Making Capacity in Long-Term Care Residents
The understanding of patients’ ability to make informed, consensual decisions has frequently been a source of concern for clinicians; this is especially true in the long-term care (LTC) setting, in which diseases such as Alzheimer’s and dementia can sometimes make it difficult to recognize an individual’s decision-making capacities. Often, this challenge creates a tension between allowing a resident to maintain their autonomy and ensuring a residents’ safety.1
The term capacity is used by clinicians or other professionals to describe whether an individual can perform a specific task, be it the ability to drive or live independently, or to consent to health care or change a will.2 In many cases, an individual’s motor or physical skills can become compromised due to an injury or disease, but the deterioration of one’s cognitive decision-making seems especially daunting in the LTC setting. Studies have demonstrated that certain degenerative conditions can have a profoundly negative impact on one’s ability to consent to treatment.3 Indeed, researchers have found that patients with Alzheimer’s disease (AD) have significantly lower complex standards of appreciation, reasoning, and understanding when compared to healthy individuals.4 Additionally, patients with AD showed much more rapid decline in these and other basic functions over a 2-year period compared with healthy older adults, leading to more impaired medical decision-making capacities.4 Currently, an estimated 5.1 million people over the age of 65 have AD, a number that could grow to over 13 million by 2050 barring any significant advancement in medical care.5
These issues are compounded further by the fact that there yet does not seem to be a uniformed standard by physicians for assessing decision-making capacity.6 Therefore, the issue of informed, consensual decision-making has a profound influence on the social and medical dynamics of facilities, caretakers, and patients. Clinicians must have a strong understanding of the complexities involved in the proper handling of informed consent while not impeding proper medical care.
To better understand the complexities surrounding this important issue, Annals of Long-Term Care: Clinical Care and Aging® (ALTC) spoke with Jennifer Moye, PhD, associate professor of psychology at Harvard Medical School and a geropsychologist at VA Boston Health Care System. Dr. Moye has been a prominent figure in the field of geriatric psychology, authoring almost 100 publications pertaining to the topics of geriatric care and capacity assessment. Among her many accolades, Dr. Moye was the 2010 recipient of the American Psychological Association’s award for the Advancement of Psychology and Aging for her work in improving the quality of life for older adults and her advocacy for expanded mental health for veterans. Dr. Moye shared her thoughts on navigating the ethical, legal, and emotional implications of assessing decision-making capacity in older adults.
ALTC: What are some of the ethical implications of a patient’s clinician, caretaker, or family member taking on the responsibility of making decisions on behalf of a patient who lacks the capacity to make their own decisions?
Dr. Moye: Generally speaking, clinicians should not be making decisions on behalf of patients with diminished capacity because of an inherent conflict of interest—that is the clinician would have two roles as the decider and the clinician. In making decisions for another person, ethicists refer to two standards—substituted judgment and bests interests. When functioning as a surrogate decision-maker, we are being asked to stand in for the patient and make the decisions the patient would have made based on their values. If this is not known, the “best interest” standard allows the surrogate to make decisions that the surrogate thinks is in the best interest of the patient. These distinctions are important because sometimes surrogates immediately move to a best interest standard and may need to be reminded that as surrogates we are not making the decision we want for the patient, but making the decision the patient would want for themselves.
In the LTC setting, does decision-making have the potential to be compromised only in residents afflicted with neuropsychiatric diseases, or can it be compromised in other residents as well?
In the LTC setting, diminished decision-making capacity is most likely to be associated with a dementing illness but certainly could occur in the setting of any condition affecting the brain, including conditions such as cancer with brain metastases, for example. However, it is important to keep in mind that diminished capacity is defined by its functional presentation, not by the presence of a disease in and of itself.
What do you feel are the main factors that determines a patient’s decision-making capacity?
A commonly accepted model for medical decision-making capacity consists of four abilities: understanding diagnostic and treatment information, appreciating the personal significance of this information, reasoning about the risks and benefits in view of one’s personal values, and expressing a personal choice. Other models exist for other types of decisions (eg, financial, independent living, testamentary, etc.) Any good assessment of decision-making capacity starts with a good clinical interview in which the clinician seeks to understand the person’s history, values, and concerns or fears. At times, questions about a patient’s decision-making processes can arise simply because the information was not conveyed to the patient by the practitioner in a manner that could be understood (eg, using too technical language or speaking too quickly). By understanding the patient as a human being, and by insuring that the person understands the proposed treatments, the clinician can be in a better position to promote autonomy and convey respect for the patient’s dignity.
What are some of the measures clinicians can use to evaluate the decision-making capacity of their patients? How reliable are these tools?
There are many tools to support the clinician in directing an assessment of decision-making capacity to the cognitive and functional elements of capacity that are most consistent with legal and scientific frameworks. These are tools, however, and not precise measures; any capacity finding at its end point is a professional judgment. A list of these tools can be found in Appendix B of the American Bar Association/American Psychological Association Assessment of Capacity in Older Adults Project Working Group resource, Assessment of Older Adults with Diminished Capacity: A Handbook for Psychologists.7 Table 1 summarizes these tools and the functional capacities that they are used to assess.
Does a patient’s dignity ever get the way of his or her own protection? How can clinicians be sensitive to the autonomy of their patients while still providing the best possible care?
Perhaps imbedded in this question is the issue that some older adults hold fiercely to their desire to be independent—particularly as it concerns their desire to stay in their long beloved home. Sometimes what is framed as a capacity issue is really a “locking of horns” with a patient over the issue of control. Again, this can best be negotiated by understanding the values underlying the patient’s statements and knowing one’s own values as a clinician. Of course, a clinician must also recognize that patients who have intact decision-making capacity maintain “the right to make bad decisions.”
How active should clinicians be in scenarios in which a patient seems to have diminished decision-making capacity?
Clinicians involved in patient care have the obligation to obtain consent for care, which necessitates the patient must be informed, must be making a voluntary (non-coerced) decision, and must have the capacity to make that decision. As such, issues of capacity arise frequently in healthcare, although it should be noted that there is always a presumption of capacity. If there are situations in which the patient’s capacity appears compromised, a first active step for the clinician would be to support and enhance the patient’s capacities to participate in the decision-making. This might be done by addressing hearing (eg, if necessary, speak louder and slower; offer a “pocket talker”); providing information in verbal and written form; maximizing the extent to which a person can see any materials (eg, if necessary brighten lights, offer “readers”); and considering the patient’s anxiety and providing reassurance. Very often, but not always, patients prefer to make decisions with the support of family members and healthcare professionals—supported and collaborative decision-making. So another means of determining whether decision-making appears to be compromised is to ask the patient his or her preference for the involvement of others in decisions, and consider if it would be helpful and appropriate to involve family.
What legal implications should clinicians be aware of with regard to patients’ decision-making capacities?
Capacity (also called competency in some settings) is a legal concept. As such, clinicians will want to be aware of the relevant statutes in their jurisdiction that provide definitions so that assessments are consistent with the definition within the jurisdiction. Most often, diminished capacity is addressed clinically through enhancements and family support, as noted above. If the person lacks decision-making capacity, there may be legal implications that could consist of following the default surrogate consent law in the state (if it exists) to obtain legally required consent. If this is not possible, guardianship or conservatorship may be considered—but only after all less restrictive alternatives have been exhausted, such as durable powers of attorney. For example, a person may lack the capacity to make a health decision but still have the capacity to execute a power of attorney, as the definition of capacity is decision- and task-specific.
1. Berg, J. W., Appelbaum, P. S., Lidz, C. W., Parker, L. S. (2001). Informed consent: Legal theory and clinical practice. New York: Oxford University Press.
2. Moye J, Marson DC. Assessment of decision-making capacity in older adults: an emerging area of practice and research. J Gerontol B Psychol SciSco Sci.
3. Okonkwo O, Griffith HR, Belue K, et al. Medical decision-making capacity in patients with mild cognitive impairment. Neurology. 2007;69(15):1528-1535.
4. Huthwait 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(4):453-463.
5. Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
6. Volicer L, Ganzini L. Health professionals’ views on standards for decision-making capacity regarding refusal of medical treatment in mild Alzheimer’s disease. J Am Geriatr Soc. 2003; 51(9):1270-1274.
7. American Bar Association/American Psychological Association Assessment of Capacity in Older Adults Project Working Group. Assessment of Older Adults with Diminished Capacity: A Handbook for Psychologists. Washington DC: American Bar Association and American Psychological Association; 2008. https://www.apa.org/pi/aging/programs/assessment/capacity-psychologist-handbook.pdf.
