You Let Them Do What??!! Decision-Making Capacity and the Exercise of Patient Autonomy in LTC

In long-term care (LTC), there is a dynamic balance between patient autonomy and rights and the duty to protect those under our care (facility-directed beneficence). LTC residents commonly exhibit conditions that negatively impact their ability to engage in a rational decision-making process. At the same time, patient rights statutes tend to assume that persons in our care are capable of making their own decisions, and are heavily weighted toward preserving patient autonomy.

When a patient’s decisions are in accordance with the family, healthcare providers, or societal norms, then the issue of decision-making capacity may be less of a challenge; the risks of the decisions made are likely to be low, and conflict is minimal. Greater challenges arise when there is a juxtaposition of patient incompetence or impaired capacity and a conflict between the patient’s “wishes” and societal norms, medical advice, or family opinions. In these circumstances, clinicians are called upon to answer the question “Can the patient make his or her own decisions?”

Competence is a legal term, determined by the courts. All individuals are presumed competent and able to fully exercise their rights as citizens even if they reside in a nursing home or have diagnoses such as dementia, unless determined otherwise by a court or clinical process.¹ LTC regulations and laws maintain a strong presumption toward patient autonomy and the preservation of patient rights; thus, patients maintain the right to come and go from the facility, to engage in activities—even if deemed unsafe by some—and to refuse care. Those with cognitive impairments do not automatically forfeit their autonomy and decision-making capacity, and studies show that impaired individuals are still able to make some decisions for themselves.^2-5 A clash can occur because the public, including family members, presumes that nursing homes, in their role of dealing with the impaired, are somehow able to control the patients they serve and keep them from making harmful or “bad” decisions. When patients, especially those with cognitive impairments, make choices that are risky or unpopular, clinical assessment of decision-making capacity is critical.

Clinicians need a method of assessing an individual’s decision-making capacity at the time of the decision, to determine whether there is support to abridge the exercise of rights that could place the patient at risk of harm. Unfortunately, there is no consensus on what these assessments should entail, who should do them, and whether they “stand up” in court. Standards vary from state to state, and related statutes and common-law principles may apply.⁵ While geriatric neuropsychology does focus on capacity and decision-making, such formal assessment may not be available in all settings or at the time when decisions need to be made. The expense of such assessments also may not be justified or suited to many of the sort of questions seen in LTC settings (eg, Can the patient go off grounds safely? Can the patient engage in an intimate relationship with a peer?). Small changes in the circumstances of the case or in the patient (eg, time of day, changes in medications, changes in the circumstances of the activity) can change the balance of risks and benefits for a particular case. Specific safety-related and judgment questions or observing the patient navigating off grounds may be more relevant than measures that tend to examine specific and somewhat more abstract cognitive domains.

Given the need to address sometimes frequent changes in function, the formal geriatric neuropsychology assessment may be more suited for “legal” issues such as testamentary capacity, fiduciary capacity, or similar matters that are addressed at some specific time. Although courts make capacity decisions in some cases, the court process is adversarial, expensive, slow, and lacks flexibility to deal with the complex interplay and changing circumstances of health, fluctuating cognitive ability, and changing prognosis or opinions—all factors that are important to consider for the particular decision to be made at the time it is made.

Many clinical models have been promulgated to assist physicians and other clinicians in assessing healthcare decision-making ability or capacity.^2-4,6-9 These models usually do not focus on generalized cognitive testing (eg, Mini-Mental State Examination), but more on assessing specific abilities and understanding the potential consequences of a decision to be made.¹⁰

A practical framework to assess capacity in use at our facility can be referred to by the acronym U-CARE (Table).^11,12 An advantage of this model is its simplicity and that it can be conducted by any healthcare professional licensed to conduct assessments. We have found that its simple and structured approach provides a good basis for training staff to assess and document a patient’s decision-making capacity in a reasonably consistent fashion. Its reproducibility in other settings is also likely to be high because of its simplicity. Because physicians, nurses, and social workers may not be experienced in capacity assessment, they are likely to believe that this should be done only by other specialties. In the LTC environment, there is rarely the luxury of having a physician or psychologist, or even social worker, available to assess capacity at the time when these questions arise and a decision must be made. Capacity questions or concerns include “Who do we put on the face sheet?” or “Can Mr. X leave the facility by himself?” or “He is refusing to go to the hospital, but he seems confused.” It is important to train the frontline licensed nursing staff to conduct these assessments. Training may be particularly important because even physician capacity assessment can be subjective and inconsistent.¹⁰

Clinical assessment of capacity is further complicated by the fact that decision-making capacity fluctuates based on the patient’s condition at the time, as well as the particulars of the decision to be made. The Figure illustrates the relationship between the ability of the patient and the complexity of the decision. As complexity and risk of the decision increases, cognitive ability must increase to sustain decision-making ability. Complex or risky decisions are those in which the exercise of patient autonomy is against the norm, against medical advice, or in contradiction to an insistent family decision-maker. Other complex or risky decisions include providing informed consent to a higher-risk procedure where there is a balance of risks and benefits, or refusal of life-sustaining care. Code status decisions, especially those in opposition to medical advice or familial wishes, are also “complex” decisions that require capacity assessment.

Ironically, most people want to make their own decisions as long as possible, but when making decisions for others, they are often more concerned with safety and propriety than they are with autonomy. The question that is frequently raised is “Why do you let them (leave grounds, have sex, refuse to turn, stay in bed when we think they should be up, etc)?” Given the noted emphasis on autonomy and rights, the more accurate question would be “What basis do we have to justify stopping them?” While it may feel uncomfortable to staff and families, individuals in nursing homes have the same right to make even “bad” decisions as the rest of us do. We can only abridge their “rights” with appropriate assessment, care planning, and documentation. When patients make “bad” decisions that place them or the facility at risk, or are against the advice of the clinicians caring for them, capacity assessment is necessary. Case 1 illustrates a dilemma requiring capacity assessment and risk mitigation.

In this example, the patient with significant physical limitations but relatively intact cognitive status wants to assert his right to leave the facility. He arguably has a history of making bad choices, including those that led to his injury and nursing home placement, and we think it is a “bad idea.” Clinical capacity assessment provides an opportunity to educate him about the risks and to assure that he has decision-making capacity sufficient to undertake the activity. Questions are proposed to him about his understanding and appreciation of the risks of the proposed activity (eg, traffic accident, getting stranded, burns, being the victim of crime, having illness exacerbation) and his process of reasoning about those risks (eg, Is he willing to accept risks or can he propose solutions to mitigate risks?).^11,12 Questions are often proposed at more than one time and by more than one person to achieve consistency. In addition, to protect the facility, the assessment should include observations of the proposed route and his behavior outside of the facility to better understand both his abilities and the risks.

Case 1: Can Physical Disability Justify Loss of the “Right” to Make Unsafe Decisions?
Mr. S has significant mobility issues due to quadriplegia and some speech difficulties, but he is mainly mentally intact. He wants to go to the local taco shop and get a burrito; he has the staff at the shop take his money from his fanny pack and place the burrito onto his lap, and he then brings it back to the facility to have staff feed it to him. There are no sidewalks on the route to the shop, which is on a busy street. Should Mr. S be allowed to leave the facility to buy food?

Facilities may attempt to limit a patient’s autonomy by establishing policies prohibiting independent leaves or by requiring a physician order for leaves outside of the facility. This practice is not recommended; patients may leave the facility without an order as an exercise of their rights. The physician order places the responsibility for assessment and risk mitigation on the physician and supposes that the physician has conducted an assessment and made a clinical decision that a certain leave is therapeutic and safe. If pressed, the physician may be better off writing an order such as: Patient may exercise his right to leave the facility, but no medications are provided.

Are we “off the hook” for a bad outcome if we assert that “He exercised his rights”? Unfortunately, it is not so simple. At the minimum, our responsibility would include documentation of an assessment of the patient that clearly states that he maintains the cognitive ability to make this decision, and that there are not sufficient reasons to justify keeping him from exercising his rights. In addition, the facility is responsible to make some efforts to assist the patient in coming up with strategies that improve the safety of the proposed activity (eg, going out only during non–rush hours, offering a community reintegration walk for this and other patients to the shop, placing a towel on the lap to protect from a hot burrito, contacting the taco shop owner for a safer way to exchange money and food, carrying a hands-free cell phone, charging the wheelchair battery before leaving). This process of capacity assessment and risk mitigation efforts may protect the facility against charges of negligence; for example, per the statement “…failure to provide…services necessary to avoid physical harm…” in 42 CFR 488.301.¹³

Under what conditions might we be able to abridge the patient’s rights? One situation is that his actions constitute an imminent danger to himself or others, or that he is so gravely disabled that he could not care for himself for a few hours outside of our facility or without constant supervision. This situation might justify restriction of rights. In some cases, even with a relatively cognitively intact patient, a decision to leave may reflect grave disability (frequently defined as an inability to provide for basic necessities, including food, shelter, and clothing)¹⁴ since meeting these needs with significant physical impairment may be much more complex than it would be for a physically intact person. This can result in a situation where the patient’s relatively good cognitive ability is outstripped by the greater complexity of managing his needs outside of a structured setting. If the patient can be redirected from leaving, then the rights are not violated. If the patient insists on leaving, you may need to contact family or law enforcement to implement legal proceedings to hold him against his will.

A facility might also be able to justify abridging of rights if the behavior impacted others (eg, Was he taking money from vulnerable peers with swallowing decrements and bringing them back burritos? Was he purchasing an item with a “regular” consistency to eat within the facility when he had dysphagia? Was he selling items he purchased at high prices to residents with dementia? Was he morbidly overweight and requesting that staff feed him an additional nine burritos a day?). When his “rights” infringe on those of others, then the facility has the duty to take some action to prevent harm. In cases where his behavior is unsafe to himself or others, we might have justification to limit his “right” to free movement. Procedures might be implemented to observe the patient more carefully upon return from the store and to remove food and store it in a safe place. Limits on the use of the power wheelchair may be implemented, if well-justified, with re-expansion of privileges with compliance with safety measures. In the interest of patient safety, we might also choose to limit our staff involvement in the high-risk activity; for example, we would not require our staff to feed and store food purchased from an outside facility, or our staff may refuse to place him in his power wheelchair if he was drunk.

While patients have the ability to exercise rights, if negative consequences to the patient, facility, or peers are observed, the facility has no obligation to provide services that promote or enable such behavior. If a patient with dysphagia chooses to eat food with an unsafe consistency outside of the facility, there is little the facility can do to prevent this when he exercises his right to leave. When the facility staff is feeding or storing unsafe foods, then providers face potential liability.

Simple Decision in a Patient with Low Ability: What Can He Decide for Himself?

Even in cases where the patient’s decision-making is significantly impaired, we should always endeavor to preserve patient autonomy to the degree possible and to identify the person best able to express the patient’s likely wishes. In most cases, an advance care document is not in place, and many times it is impossible to do the next best thing: To ask the patient who should be the primary decision-maker. Skilled professionals find that negotiation, education, patience, and persistence generally result in an outcome that is accepted by all parties, but the process can be time-consuming, contentious, and disruptive. In conversations with involved parties, it is important to place the focus on substituted judgment—not what does the wife or daughter want for the patient, but to ask “What would he have wanted if he could speak to us now?” If there is no evidence of what he might have wanted, then the next question is “What is best for him?” In this conversation, discussion of the standard of care, what other patients like him generally want, and what the family members perceive as best is paramount. Case 2 illustrates a situation where a patient had limited decision-making capacity; the question is whether he has enough capacity to determine who will make his decisions for him.

Case 2: Can an Impaired Patient Choose His or Her Decision-Maker?
Mr. M had a stroke and has limited verbal abilities and periods of confusion and crying. His wife signed him into the facility, but she works during the day. His mother and multiple other relatives visit for 5 or 6 hours a day, accompany him to therapy, and feed him. His wife feels that a comfort care status is appropriate, while his mother wants “everything done” to prolong the life of her son. The wife tells the staff that they cannot share any medical information with the mother and family and wants visits to be limited. The patient appears much calmer when his mother is around and cries when his wife visits. The wife files a Health Insurance Portability and Accountability Act complaint for the staff instructing the patient’s mother on transferring and feeding techniques. An interview with Mr. M is challenging and variable, but the response most often received is that he would prefer to have his mother be his decision-maker, but that he wants his wife to visit him as well. He tells the staff that he and his wife have been fighting. The wife threatens to sue, saying that he is confused and is making a big deal out of nothing, and that he is ill and irrational. She says that she is the wife and what she says goes. Mr. M is confused at times and fatigues easily, and sometimes doesn’t answer or seems to change his mind, depending on who is talking with him.

For individuals with profound deficits, often we have to rely on others to assist in decision-making. However, how do we pick which others to listen to? In most states, there are statutory hierarchies that generally define priority of surrogate decision-makers.⁵ Where the hierarchy is not defined, inheritance hierarchies or a hierarchy for consent to research may be used as a guideline, but these have not been tested in court. Under the majority of hierarchies, it is assumed that the spouse is the assigned surrogate in the case of an impaired patient. But what if the spouse is making decisions that appear to be contrary to the interests of the patient? Even if state statute defines a priority of surrogates, most states will still require that the surrogate exercise decision-making based on the substituted judgment or best interests standards.

Generally, doing what the patient would have wanted (substituted judgment) is the first standard to be applied, and “best interests” is applied if what the patient would have wanted is unknown.¹¹ In Case 2, if you select the wife, the mother may raise questions about the wife’s motivation and competence, and you are not free from threats of litigation and conflict. Perhaps the fundamental question here is: “Has the patient lost the ability to determine not only his own medical decisions (a higher standard), but the decision about who should assist him (a lower standard)?” In Case 2, the patient has poor, variable, and fluctuating ability to communicate his wishes due to severe cognitive impairment. Anyone who had seen him would be concerned about his ability to make decisions; however, despite his limitations, he is assumed to be competent unless proven otherwise. Although he may not be able to give full informed consent to a surgical procedure or determine his own “code status,” he may very well be able to make the simpler decision of whether to share information with his mother, who is involved in his care and who can make decisions for him when he is more impaired. In the face of a litigious and angry family, we want to carefully document our process of assessing whether the patient can make this decision for himself. Our assessment might read:

Called to assess whether the patient has the capacity to select a surrogate decision-maker. The patient expresses understanding that there is a conflict: “My mom and my wife are fighting.” He has some appreciation of the consequences of the decision and the problem: “My wife may leave me.” He is evaluated by three separate people on three occasions, and each time he indicates the same thing: “I choose my mom, but I want my wife to visit too.” His reasoning is weak, but he tells us that the wife had an affair and that he is still hurt. He says that his mom is “my mom—I want to go home to my mom.” He is verbal, although conversations are circular and require a translator. Based on this assessment, I think that the patient can adequately understand the issue, show reasoning, express his wishes consistently, and appreciate the consequences of the decision to establish his mother as his surrogate decision-maker with involvement of his wife.

Although we may have good support for our decision, which is based on both the patient’s expressed wishes and his “best interests,” the degree of conflict can be damaging to the patient and may still place the facility at risk of legal challenge. There may be little satisfaction in doing the “right” thing, and still less enthusiasm for being threatened with legal action. Thus, the above assessment is best combined with risk mitigation strategies—facilitating conversations among the family members, agreeing on a visiting schedule, and reminding each of them of their commitment to the patient. In most cases like this, negotiation, education, and the tincture of time results in more alignment.

Complex/High-Risk Decision in Individuals with High Ability: Refusal of Care

Patients who refuse care are another challenge where capacity assessment is required, especially when care is life-sustaining, the patient does not have a terminal illness, or the family or conservator desires care to be “forced.” The right to refuse care is a basic right guaranteed by the Patient Self-Determination Act (PSDA) under 42 CFR 489.102 (a)(1)(i) and in both common law and case law. Furthermore, because forcing care on an individual with the capacity to refuse constitutes battery,¹⁵ assessment of capacity is paramount in determining whether a patient can refuse care. Refusals are generally accepted among those who are cognitively intact, can provide reasoning for their decisions, and are not thought to be “suicidal.” Similarly, the issue is clear for patients with advanced dementia who clearly lack capacity—their refusals of care (called “resistive”) is palliated, but in the end, we provide the needed care without their permission, though even here, we may be limited by the practical considerations of “forcing” interventions. Do we restrain the patient to the bed and place an unwanted tube? Once again, those in the middle are the most complicated and are the ones requiring clinical capacity assessment and reassessment to guide care practices. The following case illustrates some of these difficulties.

Case 3: Can an Individual with Impaired Judgment Refuse Life-Sustaining Care?
Mr. F will not allow staff to touch him, turn him, or care for his wound. He tells everyone to leave him alone. When you tell him that he may die if he does not allow treatment, he tells you “I’m not dying!” He refuses to be treated for infection. He refuses to allow you to call his family, and when they call or visit, he angrily throws them out. He appears to have some depression but will not take medication or see a counselor. Occasionally, he has a long conversation with a certified nursing assistant and allows something to be done, but generally he lies alone in his room smelling badly and turning away everyone who enters. Mr. F will not participate in any testing to see whether his cognition is intact.

Should Mr. F be allowed to refuse care? Legally and ethically, we can justify limitations on patient autonomy and rights only if there is evidence that their actions pose an imminent danger of harm to themselves or others. Mr. F’s decision to refuse care poses risks for his health and longevity, but they are not imminent risks. He refuses care for a urinary tract infection but then recovers on his own. He refuses to be turned in bed and develops a pressure ulcer, and only permits dressing changes twice a week, but it progresses gradually over weeks, not acutely. He is in a single room, so his poor hygiene practices do not impact others as much.

We analyze the case using the U-CARE model. Mr. F evidences some understanding of the issue at hand and appreciation of the seriousness of his condition (although differs with the team as to the likelihood of death). Our assessment found him impaired in judgment and reasoning but able to express his wishes consistently to multiple individuals over a long time period. Applied over time and multiple interactions, we can ascertain more evidence of appreciation and reasoning (“I’m going to die anyway, my life sucks, I’m ready to go.”). Per the PSDA, and absent sufficient evidence of impairment to overrule his decisions, his refusals were respected; the decision he is making mostly affects him. In contrast, if Mr. F’s decision begins to affect others (eg, his hygiene is so poor it becomes a health hazard), then more forceful persuasion (eg, to bathe) may be indicated, although treatment refusals would still be honored.

Cases of refusal of life-sustaining care often involve referral to a psychiatrist or psychologist. These professionals may be helpful in conditions where mental illness symptomatology is impacting decision-making ability, and management of the illness might result in an improved ability. They may also be of assistance if the patient is a candidate for conservatorship secondary to grave disability, such as an unwillingness to stay in the facility to receive care and unable to formulate a reasonable plan for food, clothing, or shelter (the standard for grave disability in California). In this case, if the patient was conserved, this might provide more legal “cover” to insist on care, but there are also practical considerations, as noted, that remain in place with or without conservatorship: Is it practical for staff to force care over and over again, and will we force tube feeding, using surgery and restraints if food or oral medication is refused? Frequent reassessments of capacity combined with assessments and interventions designed to obtain compliance and rapport should be emphasized with documentation by multiple individuals.

Conclusion

Many LTC residents exhibit decision-making impairment that ranges from mild to profound. When limited decision-making ability is combined with complex, risky, or controversial decisions, capacity assessment and risk mitigation is critical. The U-CARE model of Understanding, Consistency, Appreciation, Reasoning, and Expression is a useful guide to assessment and documentation of decision-making capacity, as applied to a particular decision. As complexity, conflict, and risk of the decision increases, cognitive ability must increase to sustain decision-making ability. Complex or risky decisions are those in which the exercise of patient autonomy is against the norm, against medical advice, or in contradiction to an insistent family decision-maker.

For those who are cognitively intact, capacity is assumed, but we may have to take steps to make their choices safer since they are still under our care. For those who are severely impaired, issues may arise about the surrogate decision-makers’ decisions. Careful assessment is required to justify restriction of patient rights related to autonomy and refusal of care. It is critical to have mechanisms in place to tailor interventions such that they balance maintaining the autonomy of the individual to the degree possible, while at the same time addressing deficits in decision-making capacity to maintain safety.

The authors report no relevant financial relationships.

Dr. Gibson is Senior Clinical Psychologist, and Dr. Ferrini is a full-time Medical Director, Edgemoor Distinct Part Skilled Nursing Facility, Santee, CA.

References

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