Who Can Stay at Home and in Command: Judging Safety and Competency in Older Individuals

**sub**Overview of Factors Which Predict an Individual’s Ability to Control Personal Finances and Select Living Situations**endsub** After older patients receive medical care, agencies are often reluctant to allow them to return to their homes if the patients are thought to be unsafe in their environment. Sanitation, spoiled food, unkempt houses, and fear that they will wander or that they will not receive sufficient care are some of the many concerns that prevent older patients from living alone. “What we’re faced with are what factors should be measured in determining whether somebody is competent to make one’s own decision about a living situation, what cognitive deficits might influence this determination, when does the safety of those around the patient influence this decision,” said Leo M. Cooney, Jr., MD, Professor of Geriatric Medicine and Chief of  the Section of General Internal Medicine, Yale University School of Medicine, New Haven, CT. Referring to the 14th century English concept of parents patria, the innate authority and responsibility of a benevolent society to intervene in order to protect people who cannot protect themselves, Dr. Cooney posed a vital question pertaining to this issue: When does the authority and responsibility of society to protect people overrule the patient’s autonomy? Some of the important functional activities that are at risk when an older person is living at home alone include taking medication properly, preparing meals, and getting sufficient nourishment.  Other anxieties stem from the fear that an older person will be taken advantage of, that he or she will not accept help from and trust people who are offering assistance (such as visiting nurses), that the person will not be able to make the distinction between a trustworthy and non-trustworthy individual, or that the person will engage in unsafe activity, such as burning pots and pans or starting fires. When older people are thought to be incompetent, they are often considered to be unable to live alone. According to Dr. Cooney, incompetence occurs when people, because of lack of capacity to contemplate and weigh choices rationally, cannot adequately care for themselves or their property. In addition, “some of the issues that contribute to competency are one’s capacity to receive, comprehend, and relate relevant information, one’s ability to integrate the information received and relate it to one’s own situation, and one’s capacity to evaluate benefits and risks.”  In order to declare somebody to be incompetent in the American court system, evidence must be provided to determine the patient’s ability to carry out the activity in question. In addition, the older person must have sufficient understanding so that he or she can accurately assess consequences that include risk, benefits, obligation, and legal jeopardy. To determine whether or not someone is incompetent, “our courts usually focus on the individual’s functional ability to manage personal care and finances on a daily basis, as opposed to their clinical condition–whether or not they have Alzheimer’s or multi-infarct dementia, or whatever the diagnosis might be,” said Dr. Cooney. Physicians advise the court of an individual’s capacity rather than competence and, according to the speaker, there is uncertainty about when they should advise the court about the patient. “When do we say that we think this person doesn’t have the capacity because of our concerns, not because of objective things that have happened, but because of our concerns about potential safety of the patient when no unsafe actions have yet been observed?” questioned Dr. Cooney.  “In our decisions to return somebody to what might be considered an unsafe, unsanitary home situation or discharging the person from the hospital, the capacities to make this decision, as opposed to the capacities to make the decision about medical issues, are often very difficult to define,” said the speaker. For example, the Connecticut statute that is used to determine someone’s capacity is very broad, so “the ability to interpret is vast. The statute, at least in Connecticut, leaves you able to do almost anything you want to do in these situations.” Studies and tests related to the issue of medical decision making that are focused on cognitive function and the ability to make decisions and to be competent have been conducted, but “neither clinical impression nor our usual tests of mental function that we do in our clinics and hospital do well. In addition, “they’re not accurate at all in predicting somebody’s capability to make decisions. What seems to work best are signs of executive dysfunction,” said Dr. Cooney. **sub**Psychiatric Evaluation of Competency **endsub** Gary J. Kennedy, MD, Professor of Psychiatry and Behavioral Sciences, Director of Geriatric Psychiatry Division, Albert Einstein College of Medicine, Yeshiva University, Bronx, NY, agreed that psychiatrists should focus on capacity rather than competency when they are examining patients, because capacity determination is a clinical determination while the competency has more legal authority. “The reason this is important is because the capacity interview is not a forensic interview, not simply fact-finding,” said Kennedy. “I think it should be a therapeutic interview that really tries to enhance the person’s capacity, or to determine why that’s not going to be possible.” In his exploration of capacity vs. competency, Kennedy incorporated a specific case study involving Ms. G., an 82-year-old single woman who was homebound due to arthritis and spinal stenosis. Because of her aggressive and combative behavior, she was estranged from family and had no supportive contacts. After a social service agency petitioned for a guardian to provide home care services, she went through 14 home health aides in 12 months, who were either fired or refused to return to her apartment because of her verbal abuse and threats of assault. Ms. G. was eventually diagnosed with a personality disorder with little cognitive impairment. While she was getting a second opinion from another psychiatrist, Ms. G. accused the aides of lying and did not think her behavior contributed to the aides’ decision to leave. The evaluation of her cognition revealed intact orientation, registration and recall; she scored 28 on the Mini-Mental State Examination. Through other tests, however, it was discovered that Ms. G. was suffering from a combination of impaired insight and judgment, impulsiveness, affective instability, and showed signs of frontal subcortical cognitive deficits, which suggested executive dysfunction, possibly a non-Alzheimer’s dementia. Her disregard for other people’s feelings was not combined with a lack of appreciation for the consequences of her actions, and “by disinhibition manifested by diminished control of her affect and hostile impulses,” said Dr. Kennedy. “With personality disorder aggravated by subcortical dementia, the difficulties for those providing her care would only escalate,” said Dr. Kennedy. When Ms. G. was advised to reside at a nursing home, both she and her guardian accepted. Dr. Kennedy explained that “this is the kind of standard material that you see in the research or clinical literature that would describe decisionally capable persons.” In addition, “individuals with a MMSE score of zero can consistently and appropriately appoint a person or identify a person that should be their health care proxy.” According to the speaker, capable persons have the ability to consistently express their choice; appreciate the nature of their condition including diagnosis, prognosis, and possible treatments; balance the risks, benefits and burdens of various choices; apply a relatively stable set of values to the choice of available options; and communicate the rationale behind the choices. Capacity is challenged when there is an uncomfortable match between the patient’s perceptions and preferences and the resources that would ensure safety, and when the mismatch between resources and preferences becomes too uncomfortable for the patient, the caregivers, and the practitioners. The critical elements in assessment of decisional capacity (or what you should look for in the person who is making the judgment) are: the quality of rapport and trust between the patient and the doctor; judgment and insight; a level of cognitive impairment; freedom from, or the ability to overcome, beliefs and perceptions; and executive function. According to Dr. Kennedy, executive function represents an interrelated set of abilities including cognitive flexibility, concept formation, and self-monitoring and requires planning, execution, and abstraction. Loss of executive function can affect everyday activities such as cooking, grooming, shopping, dressing, and balancing finances. “You have to execute a plan to have others take care of you,” said Dr. Kennedy. Neuropsychologists often administer formal tests to measure executive function that include the modified card sorting test, trail-making tests, visual verbal test, similarities subtest, the WAIS-R, the exit interview, the initiation and preservation test, and the dementia rating scale. Because executive function is not a cortical process, Ms. G., who was articulate and did not provide evidence pointing to any formal memory impairment on the MMSE, did not experience difficulty with articulation, aphasia, or apraxia, which are subcortical problems that interfere with a person’s judgment and planning. “Indeed, striatum, globus pallidus, thalamus, these are all connected to the prefrontal cortex,” observed Dr. Kennedy. “In late-stage or in some persons’ with Alzheimer’s disease or other cortical dementias, you will see that theres executive dysfunction because the dementia is either focused in that particular area, or the disease process has progressed to a point where there are executive deficits as well,” said the speaker. If the person has a bad memory or genuine recall deficit, his or her executive function will also be impaired. **sub**Capacity for Placement Decisions **endsub** According to Sally Blach Hurme, JD, Program Consultant on consumer protection and member services, American Association of Retired Persons (AARP), Washington, DC, questions pertaining to where an older person should live and when that person’s preference to stay at home should be overridden surface within a broad range or continuum. One situation that families find themselves in when making this decision occurs when the patient and the physician can share a joint decision-making process in which older patients and family members can ask questions and weigh the risks and benefits of staying home or living in another environment. At another level, when the patient is able to discuss and reflect on the possibility of leaving his or her home but decides that it is not the right time, “the issue here, as well as all along the continuum, is whether the patient’s preference will prevail,” said Ms. Hurme. “This is the balance between preserving independence and autonomy and protecting the patient, or between patient self-determination and legal or medical paternalism.” Responses to this particular behavior could be to recognize the personal right to assume a degree of risk, exercise the right to say no, or respect the wishes and suggest ways to provide the person with safety and support, such as Meals on Wheels. “Particularly with patients with Alzheimer’s disease, this is reflected in the continuation of respecting and honoring personal autonomy and supporting the patients’ wishes to remain in the environment that they prefer and that they’re most familiar with,” said Ms. Hurme. “To accomplish this, we need to be aware of how risk-averse we tend to be when we’re dealing with older persons, with safety trumping autonomy perhaps too much.” In other continuums, patients receive inadequate care and exercise inadequate judgment, preventing the at-home situations from working. “At some point, society wants to say that the benefit of a more secure environment outweighs the risk of staying at home,” said the speaker. “However, in the eyes of many, home is where they want to stay.” According to Ms. Hurme, in an AARP study it was found that nine out of ten persons over the age of 65 say they want to stay where they are for as long as possible, and 82% say they do not want to move from their homes even if they need help caring for themselves. “Somewhere, you are brought into the process of determining what level of risk is acceptable and who is going to determine what is acceptable risk,” said Ms. Hurme. In the area of healthcare decision-making, the current legal system of advance directives and surrogate decision making is designed to ensure that the doctors are the primary authorities of whether or not the older person has healthcare decision-making capacity, and to keep doctors out of court. According to Ms. Hurme, the residential placement system is not so structured. A doctor’s opinion of where older people should live and whether their preference should be overridden is just one part of a lengthy process. The process, which will probably involve a complex decision-making process of guardianship, “is going to take place in the courts, and the judiciary is the final arbiter of capacity,” said the speaker. Ms. Hurme points out that if the patient has the capacity to decide where to live, that choice must be respected. A person cannot get power of attorney to put an older person in a nursing home if he or she does not want to live there. “Just as a capable patient has the right to refuse treatment, a patient has a right to refuse your placement suggestion,” said Ms. Hurme. If a person is incapable of deciding where to live, guardianship must be pursued. Unfortunately, said the speaker, “I’m confident that a very large portion of guardianship petitions are filed for the primary purpose of involuntary placement in a nursing home.” There is no one system of guardianship in that procedures and expectations vary from court to court. “What must be proven depends on the specific wording of your guardianship statute,” Ms. Hurme explained. However, she believes there is one “overarching principle about legal capacity from the lawyer’s point of view: A person does not lack capacity to decide where to live just because that person is doing something that her family, adult protective services, her lawyer, or her doctor find disagreeable, or not what they think is best for the patient. Eccentricity and risk-taking decisions should not be confused with incapacity.” Most states now incorporate three interrelated concepts in the guardianship system: functional definition of capacity, least restrictive intervention, and tailored or limited orders. “This means that based on recent evidence of what the person can or cannot do to care for himself or herself, the court will let the person keep as many decision-making rights as possible, and delegate to the guardian only that authority to make specific decisions that are indicated by the evidence,” said Ms. Hurme. In order for the judge to give an order that is specific to the circumstances of the individual client, the court “needs to have a clear understanding of what the client can and cannot do, what decisions the client can or cannot make, what the risks are of not intervening, and how far the intervention should go,” said Ms. Hurme. The judge’s decision depends largely on that state’s definition of legal capacity. Because there are many definitions, what the court wants depends on which state the patient is from. “Many states now want to know not only what the condition is, but what the dysfunctional behavior is that results from the condition,” explained the speaker. The judge will determine whether the evidence meets the state definition of capacity, whether a guardian should be appointed, the parameters of the order, and what powers should go to the guardian. The most valuable information when making the decision of where an older person should live is what the functional behavior of the older person is, rather than the condition, the diagnosis, or test findings. “Diagnosis or condition have declining significance, while functional ability and activity are the key.” Ms. Hurme believes that people must question what the person has done to demonstrate an inability to remain in his or her environment. “But, also, it’s crucial to know what can be done to help people stay at home.”