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Decision-Making Capacity and Conservatorship in Older Adults
When older patients make healthcare decisions that do not seem aligned with their best interests, clinicians often feel uncertain about how to respond. At this juncture in care, the patient’s decision-making capacity must be determined to assure safety and prevent repeated hospital admissions. If decision-making capacity is impaired and there has been no advanced care planning, it may be necessary to obtain a court-ordered person—a conservator—who can supervise the patient’s care. The authors define these terms and explain via a case report how they assess decision-making capacity and the challenges of doing so.
Key words: Conservatorship, decision-making capacity, elder self-neglect, guardianship.
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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
Instrument Used in the Case Study
Before determining someone’s decision-making capacity, one needs to address potential barriers to communication, such as language; identify potential social influences, including friends and family; establish how to optimize the patient’s sensory function and health; and assess for and address delirium and depression.11 We used the MacCAT-T3 to guide an interview tool that we employed to assess the case patient’s decision-making capacity to return home. This tool assumes that the criteria applied to determine capacity for any task or decision is the same for all tasks and decisions. This tool was chosen over others, such as the Hopkins Competency Assessment Test,12 because it enabled the clinician to tailor the interview guided by the MacCAT-T to the specific decision that the patient needed to make. The MacCAT-T, which consists of a detailed training manual and record form that break down the functional domains relevant to decisional capacity assessment,13 has been studied in different populations with an inter-rater reliability of 0.87-0.99 (mean kappa=0.76 for medical patients).7 Scoring can be done to compare the patient’s score with the norm for that population (eg, community-dwelling adults)13; however, for clinical purposes, the patient’s responses during the interview were most valuable, as they provided the evidence needed to determine the patient’s decision-making capacity.
The functional decision-making steps for assessing a patient’s capacity using the MacCAT-T include the following: (1) the ability to understand relevant information; (2) the ability to appreciate the significance of that information with regard to one’s own situation; (3) the ability to reason and engage in a logical process of weighing treatment options and recommendations; and (4) the ability to express a choice.3 The tool takes approximately 15 to 20 minutes to administer (excluding preparation work/chart review) and uses a rating scale of 0 to 2 for scoring, with norms available for different samples.7,13 We created a script (available on request from the corresponding author) based on the MacCAT-T format to help guide our assessment of the case patient’s decision-making capacity with regard to his ability to return home safely. For our purposes, the MacCAT-T rating scale or scoring was not used, as the information and details found during the interview itself were more important in determining the patient’s decision-making capacity and provided the insights needed to determine if legal conservatorship should be pursued.
The Process of Conservatorship
If a patient is found to lack decision-making capacity because of mental or physical impairments, a conservatorship is one option to provide support and daily management. Some states use the term guardianship for a court-ordered person assigned to supervise the daily management of an older adult, but conservatorship is the term used more commonly in our setting, as the term guardianship can also include the care of minors. State laws vary, but in general, filing a petition with the court by any interested party, such as family members, social workers, or clinicians, starts the legal process of conservatorship. Families can file for a private conservatorship with the assistance of an elder-law attorney; the public conservator is an option in most states for older adults with no relatives and no financial means to pay for conservatorship services.14 A clinical evaluation, completed by a medical provider or psychologist, and other medical evidence in support of the petition (ie, the consequences of past decisions that differed from healthcare provider recommendations) are filed with the court. The court then investigates the petition and interviews all interested parties.12 After court investigations are completed, a hearing is held and a judge determines the need for a conservatorship based on the petition, the medical evidence gathered, and the conclusions from the court investigations. In most states, a representative counsel is encouraged or mandated for the individual being considered for conservatorship.15 Family members may serve as the appointed conservator or a professional can be hired.
Implications of Pursuing Conservatorship
The cost and length of time to complete the conservatorship process make this a difficult option to pursue; the process can be drawn out for months while all interested parties are interviewed, and it may cost several thousands of dollars. It is usually difficult to complete the process when medical providers and family members disagree on the necessity of a conservatorship. It may also be difficult to demonstrate the need of a conservatorship when the patient’s dementia diagnosis is not obvious due to high premorbid cognitive function, when there is denial or a lack of insight by family members, or when the patient has preserved language skills or memory. In these cases, examining the adult’s other cognitive domains as they relate to functional status, and the ability to learn and adapt to new impairments or illness, become important. For example, judgment and insight related to complex medical management needs to be determined, such as taking medications as prescribed, monitoring medical conditions (eg, blood pressure or blood glucose), compensating for new physical or mental impairments, and recognizing when to ask for help. Personality changes need to be recognized as part of the dementia process, while factors related to culture, language, and educational background should be critically analyzed, because they can complicate test results and may lead to misinterpretation of an individual’s decision-making capacity.14
A court-ordered conservatorship significantly limits an individual’s rights and is not to be pursued lightly. Although a conservatorship is a means to protect an individual with self-care deficits, it does restrict individual freedoms,14 such as an individual’s right to determine where he or she lives and which medical treatments are administered, all of which could negatively affect his or her psychological well-being. In addition, the potential of a petitioner to be prompted by other motives that could yield prospective gains if he or she is appointed as the conservator must be weighed, and the length of due process often provides inherent benefit to the older adult by providing the time to explore all angles of the situation.
Alternatives to the conservatorship process requires proactive advanced care planning while a person’s decision-making capacity is intact. An individual with cognitive impairments may have support in place before functional or health declines occur, through family assistance, joint bank accounts, living trusts, or durable power-of-attorney assignments.14 Community agencies, such as home health services and APS, can then help to maximize the support of the individual while providing the least restrictive setting.
Case Outcome
Our team assessed the case patient using the modified MacCAT-T tool and found him able to state his understanding and appreciation of the problems associated with returning to his residence at a low-income, independent living facility. He was also able to state the possible health and safety consequences of his choices. The team also considered that the reasoning behind his choice to return to his previous residence—namely, his concerns about cost, preserving adequate funds for his remaining life span, and the importance of maintaining a level of independence—matched his values and history. The team’s final assessment was that he was indeed capable of deciding to return to his previous living arrangement.
Because the case patient was thought to remain at high risk for self-neglect, APS was contacted to follow up with him after his discharge from the hospital. He was given information regarding transportation resources, emergency contact devices, and a list of assisted living facilities in the area to consider. Visiting nurses would help him monitor his medications, and home physical therapy was planned for continued reconditioning.
Conclusion
Assessment of decision-making capacity requires an individualized and interactive process that probes the patient’s ability to grasp and manipulate relevant information, as we have shown in this case report. It also determines whether the choices being made are logical and reasonable in relation to the patient’s expressed values. Pursuing conservatorship is a serious decision and should not be undertaken lightly. Regardless of whether the patient has the capacity to understand the risk of returning home when it is deemed unsafe, or clearly lacks the capacity to comprehend this risk, the ability of the healthcare team to follow through with the process and build relationship support with family members or others is imperative for reducing the risk and severity of decline in health and the need for repeated admissions.15
References
1. Naik AD, Burnett J, Pickens-Pace S, Dyer CB. Impairment in instrumental activities of daily living and the geriatric syndrome of self-neglect. Gerontologist. 2008;48(3):388-393.
2. Skelton F, Kunik ME, Regiev T, Naik AD. Determining if an older adult can make and execute decisions to live safely at home: a capacity assessment and intervention model. Arch Gerontol Geriatr. 2009;50(3):300-305.
3. Grisso T, Appelbaum PS. Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York, NY: Oxford University Press; 1998.
4. Gibson L. Giving courts the information necessary to implement limited guardianship: are we there yet. J Gerontol Soc Work. 2011;54(8):803-818.
5. American Bar Association/American Psychological Association. Assessment of Older Adults With Diminished Capacity: A Handbook for Psychologists. Washington, DC: ABA/APA; 2008.
6. Cooney LM Jr, Kennedy GJ, Hawkins KA, Hurme SB. Who can stay at home? Assessing the capacity to choose to live in the community. Arch Intern Med. 2004;164(4):357-360.
7. Dunn LB, Nowrangi MA, Palmer BW, Jeste DV, Saks ER. Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry. 2006;163(8):1323-1334.
8. Kim SY, Karlawish JH, Caine ED. Current state of research on decision-making competence of cognitively impaired elderly persons. Am J Geriatr Psychiatry. 2002;10(2):151-165.
9. 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.
10. Marson DC, Earnst KS, Jamil F, Bartolucci A, Harrell LE. Consistency of physicians’ legal standard and personal judgments of competency in patients with Alzheimer’s disease. J Am Geriatr Soc. 2000;48(8):911-918.
11. Wang S, Schantz Wilkins S, et al. Use of a safety risk profile in the management of elder self-neglect: a clinical demonstration project. Fed Pract. 2008;25(3):17-20,23.
12. Janofsky JS, McCarthy RJ, Folstein MF. The Hopkins Competency Assessment Test: a brief method for evaluating patients’ capacity to give informed consent. Hosp Community Psych. 1992;43(2):132-136.
13. Grisso T, Appelbaum PS, Hill-Fotouhi C. The MacCAT-T: a clinical tool to assess patients’ capacities to make treatment decisions. Psychiatr Serv. 1997;48(11):1415-1419.
14. Grisso T. Evaluating Competencies: Forensic Assessments and Instruments. 2nd ed. New York, NY: Kluwer Academic/Plenum Publishers; 2002.
15. Fulmer T. Barriers to neglect and self-neglect research. J Am Geriatr Soc. 2008;56(suppl 2):S241-S243.
Disclosures:
The authors report no relevant financial relationships.
Address correspondence to:
Jenice Ria Guzman-Clark, PhD, RN
11301 Wilshire Blvd.
Mailcode 11G
Los Angeles, CA 90073
jsguzman@ucla.edu
