Ethical Legal Issues in the Care of Older Patients with Neurologic IllnessesBryan D. James
Jason H.T. Karlawish
The care of elderly patients with neurologic illnesses includes managing a number of medical problems that include substantial ethical and legal issues. These issues are the result of morbidities caused by these illnesses. Neurodegenerative dementias typically impair a patient’s ability to make a decision. Other people, such as their caregivers, must decide for them. Other neurologic illnesses such as epilepsy may not primarily affect a patient’s cognition, but they do have a significant impact on the patient’s ability to perform important tasks such as driving. Finally, in many chronic and progressive illnesses (e.g., amyotrophic lateral sclerosis), cures are not available. Hence, clinicians must have the skills to address matters of death and dying and discuss quality of life.
Unlike the other issues in this book that a physician addresses by applying the principles of medical science, ethical and legal issues require a physician to apply the principles of moral theory. Key principles are respect for autonomy (allowing a competent patient to voluntarily choose care), beneficence (minimizing interventions’ risks and maximizing their benefits), and justice (treating equal people in an equal manner). At first inspection, applying these principles may seem to be matters of having a good character and knowing a good lawyer. But, as important as those matters are, a clinician needs to have skills similar to those used to diagnose and treat the diseases that raise these ethical and legal issues. These skills will allow the clinician to identify ethical and legal issues, categorize them, and find efficient ways to address them. The failure to master these skills can have a significant impact on the quality of patient care.
This chapter focuses on five key issues that physicians encounter in the care of elderly patients with neurologic illnesses. These are (a) competency and decision-making capacity; (b) advance care planning; (c) common challenges in end-of-life decision making, including terminal sedation and assisted suicide; (d) driving; and (e) elder abuse. The general structure of this chapter is to address the nature and scope of each issue and provide practical steps to identify and address it.
COMPETENCY AND DECISION-MAKING CAPACITY: THE FOUNDATION OF EFFECTIVE DECISION MAKING
The concepts of competency and decision-making capacity are the foundations of effective decision making. A physician should respect the choices made by competent patients and seek out a surrogate to make choices for those who are not competent. These concepts are operationalized in the practice of informed consent. This section presents definitions of the concepts and outlines techniques to assess them and to make decisions when a patient is not competent. It also presents other models for decision making.
SCOPE OF THE PROBLEM
Many neurologic illnesses have an impact on cognition. The neurodegenerative dementias (e.g., Alzheimer’s disease) are common causes of impairments. For example, among patients with mild to moderate Alzheimer’s disease, fully 95% of them cannot adequately understand the information needed to make a treatment decision (45). This impairment can have a dramatic impact on the patient’s ability to make a competent treatment choice.
WHEN SHOULD A PHYSICIAN ASSESS DECISION-MAKING CAPACITY AND COMPETENCY?
All adults are competent until shown otherwise. Several clinical situations are seen when it is prudent to assess a patient’s decision-making capacity and competency. In general, these are situations when the patient faces choices that involve significant risks or uncertain benefits or when the patient refuses a low-risk and high-benefit intervention. For example, in the situation of a patient who accepts a low-risk intervention, such as aspirin therapy for a transient ischemic attack, the physician would have little reason to carefully assess the patient’s decision-making capacity. In contrast, the use of warfarin for this same problem should warrant a more careful assessment of
the patient’s decision-making capacity. This should be done regardless of the patient’s decision to accept or decline the drug. In all of these conditions, the issue is not that the physician has reversed the assumption that the patient is competent. The issue is assuring that the physician has adequately taught the patient the key facts and engaged in a meaningful dialogue about the pros and cons of the physician’s recommendation.
the patient’s decision-making capacity. This should be done regardless of the patient’s decision to accept or decline the drug. In all of these conditions, the issue is not that the physician has reversed the assumption that the patient is competent. The issue is assuring that the physician has adequately taught the patient the key facts and engaged in a meaningful dialogue about the pros and cons of the physician’s recommendation.
THE CONCEPTS OF COMPETENCY AND DECISION-MAKING CAPACITY
Decision-making capacity and competency are distinct concepts. Decision-making capacity describes a person’s ability to understand, appreciate, and rationally manipulate information (4). It is an individual quality akin to qualities such as intelligence, mood, or weight. In this way, decision-making capacity is a quality that can be measured just as intelligence is measured using tools such as the Wechsler Adult Intelligence Scale or weight is measured using a scale calibrated in kilograms. In contrast, competency is a judgment about a person. Competent describes a person whose abilities to understand, appreciate, and rationally manipulate information are adequate to make a choice, given the risks, benefits, and alternatives of the decision (4).
HOW TO ASSESS COMPETENCY AND DECISION-MAKING CAPACITY
To assess decision-making capacity, it is important to assess a patient’s ability to understand, appreciate, and rationally manipulate the key information about a decision. Table 34-1 summarizes these abilities, with definitions and standard phrases to assess them. Understanding describes a patient’s ability to know the meaning of the information. Assess this by asking the patient to say back in his or her own words the information disclosed. For example, ask a patient, “Can you tell me in your own words what are the reasons for having the spinal tap?” Because understanding requires cognitive skills that include short-term memory and language, disease that impairs these cognitive functions can impair a patient’s ability to understand.
Appreciation describes a patient’s ability to recognize that the information applies to him or her. Assess this by asking the patient to set aside a decision and answer whether the patient thinks the facts apply to him or her. For example, ask a patient, “You may or may not want to have the spinal tap, we’ll talk about that more in a minute. For now, I’d like to ask you about the risks and benefits of the procedure. Do you think that the spinal tap can benefit you?” Later, ask the patient, “Do you think that the spinal tap can harm you?” Then, ask a question to assess whether the patient thinks that he or she has the disease or problem under treatment. In all of these questions, the issue is whether the patient acknowledges that the information applies to him or her personally. Diseases can impair insight and judgment (e.g., a delusional disorder seen in schizophrenia, or Lewy body or frontal dementias) and can impair a patient’s ability to appreciate information.
Table 34-1. The Elements of Decision-Making Capacity—Their Definitions and Standard Ways to Assess Them | ||||||||||||||||
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Rationally manipulating information describes two capacities: comparative and consequential reasoning. Comparative reasoning describes a person’s ability to examine options head-to-head. For example, ask the patient, “Can you tell me how not having the spinal tap is better than having it?” Consequential reasoning describes a person’s ability to infer outcomes of the various options faced. For example, ask the patient, “What are some ways that having the spinal tap might affect your daily activities?”
The sample questions above are analogous to the questions a physician uses to assess a patient’s chief complaint, such as headache or memory loss. In a clinical encounter, the issue of headache is raised. Physicians have concepts they want to assess, such as vascular headache, migraine, and so on. To do this, the physician has a set of well-rehearsed probe questions. Based on the patient’s answers to these questions, the physician generates an assessment of the
likelihood that the patient’s headache is vascular, a migraine, or from some other cause. In the assessment of some complaints (e.g., depression), these questions can be standardized to the degree that they are collected into a scale. For example, the 15- or 30-item Geriatric Depression Scale asks a series of questions such as, “Are you basically satisfied with your life?” (79). The patient’s scores on each question are added up to generate an overall score of depressive symptoms. Although a score is not determinative of depression, the greater the patient’s score is, the more likely that the patient has depression.
likelihood that the patient’s headache is vascular, a migraine, or from some other cause. In the assessment of some complaints (e.g., depression), these questions can be standardized to the degree that they are collected into a scale. For example, the 15- or 30-item Geriatric Depression Scale asks a series of questions such as, “Are you basically satisfied with your life?” (79). The patient’s scores on each question are added up to generate an overall score of depressive symptoms. Although a score is not determinative of depression, the greater the patient’s score is, the more likely that the patient has depression.
In the case of decision-making capacity, measure the patient’s ability to understand, appreciate, and rationally manipulate information. Ask standard questions and then assess the adequacy of the patient’s answers. Efforts are made to correct deficiencies. After each answer, score the patient’s performance (poor, good, or excellent). The sum of these scores is then used to substantiate an assessment of how well the patient performs on each of the measures of decision-making capacity.
In addition to assessing these capacities, include an assessment of the patient’s cognition and affect. These data are particularly useful because they will help to explain why deficits exist in a patient’s decision-making capacity. Hence, assessing competency has not only an ethical warrant but also a clinical one. It may be the initial clue that a patient suffers from a clinically significant disorder in affect or cognition.
All adults are competent unless shown otherwise. Use data that describe a patient’s decision-making capacity and the risks and benefits of the decision at hand to judge whether the patient is not competent. For example, a patient with mild Alzheimer’s disease faces the decision of whether to enroll in a clinical trial. In conversation, a physician may find that the patient appreciates the information and can reason about how the clinical trial will affect daily life but has considerable difficulty understanding all of the information and comparing options. In such a case, the judgment of whether the patient is competent will rely on the degree of the impairments in understanding and comparative reasoning. For example, the patient may not understand that the project is research and includes random assignment to drug or placebo. The physician must judge whether this misunderstanding, in the context of the risks and potential benefits of the research, means that the patient is not competent.
OTHER MODELS FOR DECISION MAKING
Competency and decision-making capacity are foundations of the principle of respect for autonomy. They derive from theories of rational decision making that are operationalized in the doctrine of informed consent. In other words, they assume that people do and should “weigh the risks and benefits” before making a voluntary decision. Many patients do engage in this kind of decision making, and a physician should regard it as a key model to guide the role of doctor as teacher. However, a physician needs to respect that patients may not adhere to this same model.
Patients use other models for making decisions about clinical care and research. Chief among these models are decisions based on trust in other persons (e.g., family or physician) or trust in institutions (e.g., a university or pharmaceutical company) (24,47). In a trust-based model, the person will cede the task of assessing the information or even making the decision to another person such as a family member or physician. This other person is identified as entrusted. Although this model does differ from one that features rationally weighing information, it fits within the principle of respect for autonomy. It is reasonable for a person to cede authority to another, provided that the decision to do so is voluntary and informed.
For a model based on trust to function ethically, the physician needs to recognize factors that can undermine trust. Conflict of interest, chief among these factors, is the term that describes a condition of two or more relationships that possess inherently contradictory commitments or obligations. For example, a physician who owns a for-profit testing facility and also prescribes testing at that facility is in a conflict of interest. Such a conflict can undermine or even negate the patient’s trust. A physician has an obligation to disclose or even avoid the conflict.
ADVANCE CARE PLANNING
Advance care planning describes a competent person’s preferences for future medical care. The physician’s role in providing diagnosis and prognosis warrants a role in assisting the patient in this planning. Planning can take two forms: conversations that lead to considered plans or structured documents called “advance directives.”
ADVANCE DIRECTIVES
An advance directive is a set of instructions indicating a competent person’s preferences for future medical care. It is used to guide health care professionals in the event that the person should become unable to communicate personal wishes or incompetent to participate in medical decision making. In general, an advance directive addresses ethically problematic decisions involving life-sustaining treatment for patients who are terminally ill or near death. Advance directives are intended to preserve patient autonomy by ensuring that patients are able to direct their future
medical treatment and to help physicians avoid ethical dilemmas in treating incompetent patients.
medical treatment and to help physicians avoid ethical dilemmas in treating incompetent patients.
Two kinds of advance directives exist: a living will and a durable power of attorney (DPA). Living wills are documents that instruct physicians proactively regarding the initiation, continuation or discontinuation, or withholding or withdrawal of particular forms of life-sustaining medical treatment (25). A DPA for health care is a document that designates a person (also known as an “agent,” “surrogate,” “proxy,” or “attorney-in-fact”) to make medical decisions on a person’s behalf should that person become unable to do so. A DPA allows for greater flexibility than a living will because the agent can make decisions, should certain circumstances arise. Authorities, such as the American Bar Association, recommend that a patient have both a living will and a DPA (63). Additionally, a patient’s oral statements in conversations with relatives, friends, and health care providers are also recognized ethically and, in some states also legally, as advance directives, provided they are properly charted in the medical record. Table 34-2 lists a few good World Wide Web resources for more information on advance directives.
The authority of an advance directive has been tested by court cases including a Supreme Court decision (25). All 50 states and the District of Columbia have laws recognizing the use of advance directives. Each state has a form based on the specifics of its laws. These legally binding documents take effect only when medical decisions must be made and the physician finds that the patient is not capable of making them. In some instances, the physician must also judge that the patient is in a terminal condition. A person can revoke or change the advance directive at any time. A physician who morally objects to a patient’s advance directive may choose not to comply but must facilitate the patient’s transfer to another physician. The Patient Self-Determination Act (PSDA) is a federal law requiring health care facilities that receive Medicaid and Medicare funds to inform patients of their rights to execute advance directives. The requirements are to ask patients at admission if they have previously executed an advance directive, provide information about advance directives to patients and their proxies, and inform patients of their rights to execute advance directives if they wish (25,65).
Table 34-2. Web Resources on Advance Directives | |||||
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Although the law has attempted to make information on advance directives more accessible to patients, few patients actually complete one (20,27,39). Approximately 3% to 14% of the general adult population and 10% to 12% of hospitalized patients and nursing home residents have advance directives (28). Rates of completion are higher among older patients and patients in poorer health than among patients who are relatively young and healthy (29,50). Ethnic and cultural factors can also influence completion rates. Whites and Asians are more likely to complete advance directives than are blacks and Hispanics (51,62,65). Education has also been shown to be an independent predictor of completion (65,67).
A number of factors responsible for the low rate of completion of advance directives have been examined, including misconceptions of the role of clinicians or family members in end-of-life decisions and the perception that directives do not accomplish the goal of patient autonomy (28,69). The latter concern may be justified because physicians are often unaware that a patient has an advance directive (28) or are careless about following a patient’s wishes (30). Furthermore, studies suggest that advance directives have little effect on resuscitation decisions (69,70), use of medical treatments in general (28,64), or costs (64,68,69). The ineffectiveness of advance directives is a major problem. If patients are to be encouraged to complete advance directives, they must be respected at the time they are intended to take effect.
Perhaps the greatest barrier to completion or following an advance directive is the lack of physician communication with patients. Although the PSDA mandates that advance directives must be discussed with patients, many physicians express concerns that these discussions take too much time or lead to patient suspicion that maximal care will not be provided (62,65). However, studies have shown that the latter concern may be unwarranted, as most patients surveyed expressed desires to have such discussions (18,40,62). Concerns also exist that living wills are not specific enough to deal with certain clinical questions (19,55,70). A further concern is that an advance directive is ineffectual because physicians may not consider a patient “absolutely, hopelessly ill” during periods of diminished capacity, thus not executing the patient’s directive (69). For advance directives to serve their
purpose in preserving patient autonomy after losing competency and decreasing problematic clinical decision making, physicians must educate patients about completing directives and attempt to better understand their patient’s preferences for the use of life-sustaining treatment.
purpose in preserving patient autonomy after losing competency and decreasing problematic clinical decision making, physicians must educate patients about completing directives and attempt to better understand their patient’s preferences for the use of life-sustaining treatment.
PHYSICIAN-PATIENT COMMUNICATION ABOUT ADVANCE CARE
Documents that describe advance care plans are only as useful as the degree to which the people who will use them understand, appreciate, and reason through what the document says. In short, the documents do not obviate the need for communication between physicians and patients about patient values and goals. Such communication can occur during the physician-patient conversation about treatment decisions. If a patient has a serious chronic illness (e.g., amyotrophic lateral sclerosis), the physician should obtain explicit instructions about treatments that are likely to be needed in the future (21). Aside from such likely scenarios, the focus of advance care communication should not simply be specific treatment decisions. In advance care conversations, physicians often discuss the easiest scenarios; few patients would wish to be kept alive if they were permanently unconscious with no hope of recovery, whereas most patients would desire aggressive treatment in a reversible situation (73). But such conversation will not be useful when more complex end-of-life decisions arise.
To adequately assure that the physician’s future actions respect the patient’s autonomy, advance care conversations must go beyond preferences for specific treatment options and elicit the patient’s deeper values and goals. Patients asked about their goals for advance care planning list influencing what interventions are done to them as only one of their goals. They also identify the goals of preparing for death, gaining a sense of control, strengthening relationships, and relieving burdens on others (46,66). Once the patient’s values and goals are clarified, specific decisions can be easier to make. It is important for the physician not to hide behind technical aspects and avoid eliciting the patient’s emotions. Patients’ emotions and concerns are important when exploring their goals.
How can physicians explore patients’ goals? The same technique they use in everyday clinical encounters can facilitate discussions about future care. In particular, open-ended questions and follow-up questions that incorporate the patient’s own words are listed in Table 34-3 (21,41).
Four important points can guide the physician-patient discussion. First, explicitly ask the patient about uncertainty. Patients often state that they would only want life-sustaining treatment if it will help them. This attitude is completely rational but does not take into account the reality that physicians are often uncertain about the outcome. Patients should be asked about such situations with questions such as, “What if we are not sure whether we will be able to get you off the breathing machine?” (21). Second, ask whether reversibility of the condition would alter the patient’s views. For example, if the patient states that he or she would never want to be placed on a ventilator, ask, “What if we could get you off in a short period of time?” (21). Also ask whether the patient would want any treatment at all in “states worse than death” (21). Controversial treatments such as artificial nutrition and hydration should be discussed here. Third, clarify what the patient means when using potentially vague and loaded terms such as “vegetable” or “quality of life” (21). Finally, it is important to make sure throughout advance care planning that you and your patient are communicating effectively. Do not dominate the conversation; spend as much time listening as talking. In short, many of the same principles described earlier in the section on assessing competency and decision-making capacity apply here. The principle to good communication is “ensuring that the patient understands the implications of his or her stated preferences and that the doctor understands the patient’s values (emphasis ours)” (21). Do everything possible to establish trust that everything possible will be done to meet the patient’s goals and continue to respect the patient’s autonomy.
Table 34-3. Useful Questions to Prompt a Discussion about End-of-Life Care | ||||||||||||||||||
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