Annals of Long Term Care

Key words: Conservatorship, decision-making capacity, elder self-neglect, guardianship.

Elder self-neglect is a common reason for referral to Adult Protective Services (APS), but such cases may be vastly underreported. Patient decisions that are in opposition to healthcare team recommendations are sometimes characterized as personal preferences or as behavioral idiosyncrasies.¹ Poor decisions, however, may also indicate impaired decision-making ability and capacity for self-care. In one major urban hospital, as many as 70% to 80% of older adults were found to have poor insight into their ability for continued, safe, independent living.² Such patients are at risk for repeated hospital admissions because of their unacknowledged decline in function and poor ability to manage their diseases and medications. We present a case report that explains how we evaluated the decision-making capacity of an older adult with regard to his ability to safely return to his previous residence after hospitalization. We also outline the steps that must be taken to conduct such assessments and the challenges inherent to the process.                                  

Case Presentation

A 91-year-old veteran was admitted to the inpatient geriatric ward because of weight loss and failure to thrive. He had been living independently in his own apartment, worked part-time as a sales distributor, and drove himself to the office every day. He reported that he had recently quit his job and had stopped driving because “it was too much” for him. He had also moved to a one-bedroom studio apartment in an independent, low-income, senior living facility, where meals were provided in a congregate setting. He expressed symptoms of generalized weakness and lack of motivation.

The patient’s physical examination and work-up were normal. Following antidepressant therapy and meal supervision, his appetite slowly improved and he gained weight. His ambulation and strength improved with physical therapy. Because of this improvement in the context of external support, the interdisciplinary team recommended that, after hospital discharge, he move to an assisted living facility for meal supervision, medication management, and socialization. The patient was ambivalent about such a change, however, and he oscillated between agreeing to an assisted living facility and going back to his low-income independent living facility. His rationale was that, compared with admission, physical therapy had made him feel stronger and he thought he would now be safe living independently. The patient also said that he understood the team’s reasons for recommending a higher level of care and agreed he had problems remembering to take his medications. He also realized that his mood and food intake improved when he was around other people.

Although the patient acknowledged the potential consequences of living alone, such as the risk of falling without readily available assistance during ambulation, he was more concerned about what his quality of life would be like in an assisted living facility. He was concerned about the cost of moving, saying he would be left with no money at the end of the month after paying for board and care. He also expressed concerns about having to share a room and lack of privacy. He doubted his ability to look for an assisted living facility by himself. In the end, the patient decided to move back to his low-income, independent living facility.

Because his decision differed from the healthcare team’s recommendations regarding the safety risk of his solitary living arrangement, limitations of his self-care abilities, and the recommended discharge location, the team decided it would be useful to assess the patient’s decision-making capacity. The MacArthur Competence Assessment Tool-Treatment (MacCAT-T)³ was used as a guide and individualized for the patient. This tool, our process, the issues surrounding the evaluation of decision-making capacity, and the outcome are discussed in the sections that follow.

Discussion

Decision-making capacity and competency are terms while often used interchangeably, are actually quite distinct. All adults are presumed to be competent unless adjudicated otherwise by a court of law, usually following the initiation of a guardianship process.⁴ Criteria for the determination of competency is state specific, involving some or all of the following legal standards⁵: (1) a disabling condition with a physical or mental illness diagnosis; (2) impaired functional behavior leading to unmet care needs; (3) impaired cognitive functioning manifested by an inability to reason or process information; and (4) other options have been tried to meet the patient’s needs but have failed to keep the patient safe, or there were no other options available.

Decision-making ability or capacity refers to an individual’s ability to give informed consent and implies varying levels of ability to arrive at a conclusion or course of action after review of available information.⁶ A clinical provider may make a determination of decision-making ability/capacity, and to provide this information to the court to assist in determining need for guardianship.^4,6

Evaluating Decision-Making Capacity

Evaluation of decisional capacity is usually done when the patient refuses a recommendation for care.⁷ Making bad choices, however, does not necessarily mean a person lacks the capacity to make decisions. Nor does agreement with the treatment plan presume that capacity is intact.⁶ Incapacity may be short-term, as occurs with delirium or after undergoing anesthesia, for example. Decision-making demands fluctuate, and capacity depends on the match between the patient’s ability, the functional demands, and the inherent risk of the situation. Since capacity is specific to a particular decision, a patient with cognitive deficits, including executive dysfunction and dementia, may still have the ability to make decisions to solve certain problems. The main issue in the evaluation of decision-making capacity is the process of making the decision, and not the decision itself. The threshold for lack of capacity often depends on the clinician’s perceived magnitude of the degree of benefits and risks associated with the decision needing to be made.^3,6,8

Tests of Decision-Making Capacity

A recent review found that standardized cognitive tests often do not correlate well with decision-making capacity evaluations.⁸ Although executive function is important to problem-solving ability and insight, it is not tested well by some cognitive tests. General clinical interviews or impressions, such as personal judgment by various clinicians to assess decision-making capacity, may result in variable criteria measures.⁹ Of several instruments developed to measure decision-making capacity, most differed in testing functional abilities, such as levels of understanding, appreciation of the problem and its consequences, or reasoning. Most instruments lacked measures of normative properties for older adults.⁸ Provider agreement about a patient’s decision-making capacity improved when an instrument with specific criteria or standards was used to guide judgments of decision-making capacity.¹⁰

A review of 23 published instruments that assessed decision-making capacity between 1980 and 2004 found that some instruments used vignettes or scenarios, whereas others used the patient’s specific situation.⁷ Most instruments used structured or semi-structured interviews, and only a few had manuals for the preparation, administration, and scoring of the test as well as descriptions of the psychometric properties of the instruments. This review also found that instruments differed in the kind of functional abilities tested and in the definitions of domains, such as the appreciation of the problem versus appreciation of the consequences of the choices.⁷