CHAPTER 4—LEGAL AND ETHICAL ISSUES
DECISIONS NEAR THE END OF LIFE
SPECIAL ETHICAL ISSUES IN DEMENTIA
Normative ethics is the inquiry into the standards of what we see as right or wrong action. It focuses on the question “What ought I do?” Medical ethics is based on a utilitarian ethical structure; that is to say, it is not based on deontological overarching moral imperatives (as a religious ethic would be), but rather seeks the answer to the ought question through the principles that are applied in the context of the clinical situation with the goal of providing the greatest beneficence (ie, maximizing good consequences and minimizing bad consequences). These principles are tethered to values and perspectives that are unique to each culture and that may differ, depending on whether one is talking about a specific case (situational ethics) or about public policy.
The four guiding principles for American medical practice most often cited are the following: respect for autonomy, nonmaleficence, beneficence, and justice. How each of these principles guides the practice of medicine today is different from even 50 years ago. These principles and their application also differ widely within various subcultures within the American culture.
The primacy of individual autonomy is a foundation of American culture, from the early pioneers to modern medical practice. Respect for individuals’ autonomy should include respect for their right to subjugate their individualism to family, culture, or religion. In many cultures, family structure dictates who will be the decision maker for individuals within that family, and that person is deferred to even when the individual involved retains the ability to make his or her own decisions. However, even when such dictates are absent, clinicians all too often consult with and defer decisions to the adult child of an elderly patient who is capable making decisions him or herself.
Nonmaleficence is, in essence, the Hippocratic “do no harm.” What a culture or an individual may view as harm differs widely. The most frequently cited conflict between mainstream and subculture perspectives is that concerning blood transfusions for a Jehovah’s Witness. For a Jehovah’s Witness, blood transfusion causes more harm than the alternative, even if that alternative is death. But views of harm will also vary from individual to individual. Understanding the values of subcultures within our society may help to give us clues as to the spectrum of the values that underlie that individual's perspective on harm. Similarly, what constitutes beneficence, doing more good than harm, is very culture bound as well as specific to the individual. (See Cultural Aspects of Care.)
Finally, the concept of justice and health care in our society is still very ambiguous. There is not a recognized right to health care in this country. The distribution of health care benefits and the use of health care technologies continue to be very uneven and reflect biases regarding gender, age, race, and ethnic origin. Researchers have neglected to include older adults in their study population, and the lack of knowledge on the relative effectiveness of interventions when they are used for older patients may lead to the under- or overutilization of interventions in this age group. Furthermore, assumptions that equate age with chronic illness and comorbidity may deny beneficial treatment to healthy elderly patients. Patients from groups that have long been denied many of the benefits of our society, especially our health care dollars, may be more reluctant than more historically privileged patients to step back from aggressive treatments because of a perception of continued prejudice.
It is important to keep these differences in mind when considering the following discussions of ethical decision making and its application to the individual patient. These are, in a true utilitarian sense, guiding principles, not moral imperatives. Just as the “laws” of medical science differ from case to case, these principles need to be used as they apply to each individual situation.
Because of the nature of the diseases affecting older persons, clinicians are often called on to assess a person’s decision-making capacity and to use other, appropriate sources of decisional authority when that capacity is impaired. Although the focus of much of the literature has been on clinicians’ assessments of patients’ capacity to make medical decisions, clinicians are also asked to render opinions on patients’ ability to make decisions about other matters, such as managing money, writing a will, continuing to drive, or possessing firearms. It is important to use the correct terminology in discussing the physician’s responsibility. A physician may evaluate a patient’s capacity to make decisions, but competence and incompetence are legal terms, and they imply that a court has taken a specific action.
Assessing the patient’s ability to understand the consequences of a decision is the overarching principle used in making a judgment of decisional capacity. To make a medical decision, the patient must be able to understand the basic information about his or her condition and the probable outcomes of the disease and of various potential interventions. This requires the ability to understand the disease process; the proposed therapy and alternative therapies; the advantages, adverse effects, and complications of each therapy; and the possible course of the disease without intervention. The patient needs to be able to understand the broad consequences of accepting, deferring, or rejecting a proposed intervention. Admittedly, even physicians cannot predict the full implications of complex medical decisions, since they can rarely know all the consequences of an intervention or the precise natural history of an illness. Nonetheless, the patient should be able to make decisions that are based on his or her beliefs and values. Therefore, it is often most helpful for the clinician to explore a patient’s hopes and fears and to help the patient clarify his or her goals so that the treatment options that are offered are based on these goals. Cultural differences of the members of ethnic minority groups can make assessing decision-making capacity a more difficult task than it already is. Capacity assessment involves abstract concepts not easily communicated in another language. It also involves interpreting value judgments on the basis of what is considered reasonable; this may differ according to culture. Clinicians must avoid assuming on the basis solely of ethnic background that a patient holds certain beliefs and evaluate each patient by considering his or her own biopsychosocial circumstances.
The capacity to make a living will is similar to that of being able to make treatment decisions, although it is somewhat more complicated, since the patient is being asked to think in the abstract, with a “what if?” frame of reference. The ability to choose a health care proxy (see below) is much less complex, and even fairly impaired patients are often able to choose someone to make decisions for them.
The requirements are even less stringent for testamentary competence (the ability to make a last will and testament). In general, a person’s ability to decide how he or she wishes to dispose of belongings after death is felt to be preserved even when the person is very cognitively incapacitated in other ways. As long as the person can identify the individuals involved, is not delusional or in other ways psychiatrically ill such that judgment is impaired (eg, paranoia), and is capable of understanding the consequence of signing the will, he or she is considered to have testamentary competence.
Table 4.1 summarizes the elements of decisional capacity in each of these four areas.
Traditional tests of cognitive function have some, but limited, utility in determining decisional capacity. An overall score on the Folstein Mini–Mental State Examination (MMSE) of 10 or less indicates such diminished cognitive ability that it is unlikely that the person retains decisional capacity. Some deficits uncovered by the use of the MMSE may be relevant (eg, immediate memory, attention, word finding, understanding simple verbal or written instructions, and ability to express simple ideas in writing). Others are not (eg, calculation and visuospatial relationships). As we come to appreciate the influence of frontal lobe dysfunction on a patient’s capacity to function, especially to perform complex activities of independent living, we are also coming to appreciate the influence that the cognitive domains tested with executive function have on decisional capacity. Executive functions include problem solving, planning (including appreciating consequences of an action), initiation, capacity to monitor one’s own behavior, and inhibition of inappropriate behaviors. The Executive Interview 25-item examination (EXIT 25) of executive function has been shown to correlate well with subjective measures of decisional capacity. Observation of the patient while completing tasks on the examination may reveal poor insight, impulsivity, intrusion of irrelevant material, poor self-monitoring, and impaired ability to form and follow through on a plan. Clinicians may make similar observations by observing a patient draw a clock.
Specific tests of decisional capacity have been developed. The Capacity to Consent to Treatment Instrument asks the person to read two vignettes and then decide between two treatment options. The Competency Assessment Test helps judge the person’s ability to understand advance directives. Both instruments deal with hypotheticals, thereby adding more abstraction than is necessary for deciding real-time issues. The MacArthur Competency Assessment Tool—Treatment tests the person’s ability to make a specific decision and has the advantage of dealing with real-time decisions. Assessment of decisional capacity is a functional assessment; therefore, there is no substitute for critical observation of the process itself.
The hierarchy of decision-making strategies for those making the decisions for incapacitated patients is as follows: 1) respect their last competent indication of their wishes, 2) use substituted judgment, and 3) determine their best interests (ie, an analysis of benefits versus burden). Table 4.2 summarizes the hierarchy.
The last competent indication of wishes is most relevant in cases when patients are able to foresee that they will become incapacitated and can foresee what decisions will need to be made. Patients entering the terminal phase of an illness who know that at some point they will become confused or unconscious can give very clear advance directives (also called advance care plans in some contexts) stating their preferences for care. As long as the circumstances remain substantially as predicted, other persons should not be allowed to reverse these decisions.
Substituted judgment is the process of constructing what the person would have wanted if he or she had been able to foresee the circumstances and give directions for care. In theory, those who know the person best and understand what his or her fears, pleasures, and goals were (ie, what the patient’s rationale for a decision would have been) can provide substituted judgment. This is usually, but not always, the next of kin. A patient can appoint someone to hold durable power of attorney for health affairs (designating that person as what is also referred to as a health care agent or proxy). The patient chooses the person who can best represent him or her. Any such surrogate makes decisions only if the patient has become incapable of making decisions. The person granted durable power of attorney takes precedence over the next of kin.
The best-interest standard or the principle of beneficence guides physicians in making a medical decision for an incapacitated patient on the basis of the benefits and burdens an intervention poses for that person. When there is no expressed wish by the patient and no one to offer substituted judgment, then the surrogate decision maker must weigh the benefits and the burdens of treatment for that person in order to make a decision. Such analysis is best done by someone who is very aware of what gives that patient pleasure, what causes agitation, fear, pain, or discomfort, and how the patient reacts to a change in setting, use of restraints, and similar matters.
In the absence of next of kin or durable power of attorney for a patient lacking decisional capacity, the court may appoint a conservator (called a guardian in some states). There are usually two types of conservatorship: conservator of finance and conservator of person. Incompetence in matters of finance is usually determined either by the demonstrated incapacity of the patient to manage financial matters (eg, unpaid bills, uncashed checks) or through specific testing by either an occupational therapist or a neuropsychologist. A conservator of person is required when the patient has demonstrated that he or she can no longer make personal decisions (such as medical decisions) or care for him- or herself to the point that the patient endangers him- or herself and cannot understand and accept the need for help (eg, neglecting oneself or risking injury).
Living wills are advance directives that attempt to demonstrate what decisions a person would make under certain circumstances. Most living wills address a couple of hypothetical clinical situations (eg, vegetative state, terminal illness) and four possible treatment options (cardiopulmonary resuscitation, respirator therapy, artificial feeding and hydration, and dialysis). A living will has limited utility because of its vagueness and lack of generalizability to the decisions that most commonly need to be made. Some living wills offer a detailed set of hypothetical case scenarios and treatment decisions, but these can be difficult for patients to understand and may not add information about the person’s rationale for decisions. An individual’s reaction to a hypothetical event may differ from how he or she will deal with reality. Nonetheless, a living will can be used as evidence of preferences as one is trying to construct how a patient who lacks decisional capacity might have felt about an intervention.
Even when patients may not be fully capable of making decisions, often they can still participate in decision making at many levels. A task assessment of decision-making ability around a specific issue is always appropriate. A patient with even very little cognitive ability can give some indication when something causes discomfort or displeasure or when something brings pleasure. The surrogate decision maker must consider these indications when analyzing the benefits and burdens of an intervention. Case law supports the idea that the patient’s indications of preference should be given consideration.
The perceived relative burden of an intervention may vary from one person to the next because of differences in mental status and ability to cope with change or disability. A demented patient who is accustomed to one environment will have a much harder time adjusting to hospitalization and may need restraints in order to undergo even something as simple as intravenous antibiotic therapy. The relative benefit of this therapy should be weighed against the burden of hospitalization for such a patient.
It is nearly impossible to perform some interventions without the cooperation of the patient. If the conservator recommended a cataract operation but the patient refuses to cooperate, for instance, it is doubtful that the procedure could be performed. In other situations it may be hard to justify doing a major invasive procedure against the will of an alert and mildly to moderately impaired person, even though it could be done. An example is a patient with frontal lobe dementia who adamantly refuses cardiac surgery. A surrogate decision maker must consider the present status of the patient and the patient’s wishes, concerns, pleasures, and pains. Even though a person may not be intellectually capable of consenting to (or refusing) a treatment, on some level his or her assent may be needed in order to carry out that treatment.
Patients may temporarily lose the ability to make decisions during acute confusional states, acute psychotic episodes, periods of unconsciousness from anesthesia or illness, or during an acute central nervous system event. Although in these cases the patients can be expected to regain this ability over time, the rules described above still apply. Decisions that the patient has made before becoming temporarily incapacitated should be respected. A patient may reverse his or her do-not-resuscitate status while undergoing anesthesia with the understanding that it can be reinstated postoperatively. However, a patient who has stated that he would never agree to resuscitation should not have this reversed by a family member during a temporary confusional state due to an intercurrent illness.
When using either substituted judgment or best-interest standards in surrogate decision making for a patient with a transient loss of decisional capacity, the decision maker should err on the side of more aggressive intervention if there are situations where the patient’s wishes are not known or the circumstances are substantively different from what the patient had anticipated.
The new emphasis on the quality of consent obtained for participants in research must extend to the vulnerable populations of elderly persons. Still, it is imperative that researchers study dementia and related problems so that the care of these patients may improve. The two most vulnerable populations are those with cognitive impairment, by virtue of their inability to understand the study or their role in it, and institutionalized patients, who may feel coerced to consent. Research involving vulnerable populations needs to be particularly well designed and focused on issues of importance to that population because of their lack of free will in having others agree to their participation.
Guidelines developed by the American Geriatrics Society for informed consent for research on cognitively impaired persons are shown in Table 4.3.
Although the issues discussed in this section focus on the period near the end of life, the decision-making process and ethical principles described are the same for all medical decisions. All patients make decisions, consciously or subconsciously, concerning treatment of minor conditions, adherence with medical regimens, and related issues by weighing competing values and needs. When a person is faced with a terminal illness or a chronic, disabling, or progressive disease, decision making becomes more acute and focused. Patients, families, and physicians must attempt to balance benefits and burdens when making many health care decisions. This difficult task is further complicated by the fact that only probabilities of the benefits and burdens can be known, not certainties.
See also the section on end-of-life decision making in Cultural Aspects of Care.
A patient’s right to refuse unwanted treatment was confirmed by the Supreme Court of the United States in the 1991 case of Cruzan v. Director, Department of Health of Missouri. This refusal can occur before the intervention has been instituted or after it is in place. There is no ethical or legal distinction made between these two situations, often referred to in the more dramatic terms of withholding or withdrawing therapies. For example, in the case of uremia, a patient with kidney failure may decline to begin dialysis, thus increasing the risk of death from uremia. Alternatively, a patient may try dialysis for a period of time, even years, and then choose to stop this treatment and die from uremia. The same principle holds for discontinuing ventilatory support for a patient. The patient will die from his or her underlying respiratory disease whether ventilatory support is never started or if it is discontinued. The act of extubating a patient with the expectation that he or she will die is difficult for many clinicians because of the proximity of the act performed by the clinician and the death of the patient, but the decision is informed by the same ethical principles as is the decision to discontinue dialysis or to decline other medical interventions.
Clinicians and families often feel uncomfortable when a patient declines tube feeding and intravenous fluids. Case law, as well as the Cruzan case, characterizes these methods of delivering food and fluid as medical interventions; therefore, they are subject to the same ethical right of refusal that applies to any other medical interventions. Many people worry that the terminally ill patient will suffer without these interventions, but accumulated experience in hospice care has shown that it is usually easier to make someone comfortable without them: intravenous and gastric administration of food and fluid can cause discomfort through decreased gastric emptying and gastric distention, the need to replace intravenous lines or nasogastric tubes, and fluid overload as membranes become more permeable. These interventions may dampen or eliminate some of the natural comfort measures that occur, such as the release of endorphins.
Palliative care, defined here as interventions that are given in order to relieve discomfort or suffering, may at times have the unintended effect of hastening death. We have come to accept that there may be two effects of a treatment, one (intended) effect of palliation, and the other possible (unintended) effect of hastening death. This is sometimes referred to as the rule of double effect. The intention of the application of the medical intervention is not to hasten death, but to palliate symptoms. Aggressive pain management, when respiratory depression is foreseeable but not intended, is generally seen as an ethical practice. Further, most evidence shows that gradually increasing narcotic dosage does not hasten death. The rule of double effect has been extended by some to cover the use of terminal sedation (without hydration) in cases where any level of consciousness will constitute continued suffering, as is frequently the case in death from head and neck cancer, for example.
Physician-assisted suicide and euthanasia occur when an intervention is made with the clear intention of ending the patient’s life. The underlying motivation of patients who wish to hasten death varies. In population-based surveys, people commonly cite fear of pain and of other suffering (such as shortness of breath, anorexia, nausea, constipation, insomnia, and anxiety) as the reason for considering physician-assisted suicide. Fear of being dependent or a burden to others is mentioned at least as often. Other motivating factors that physicians mention are depression, problems with personal relationships, spiritual issues, grief, and sleep disorders.
In the United States, unlike in some other countries that have addressed this issue, only physician-assisted suicide (and not euthanasia) is being considered for legalization. Because suicide is an act committed by the person who will suffer the consequences, it is felt that such a death is more clearly voluntary than a death that results from another person’s administration of a lethal intervention. Although the Supreme Court has ruled that there is not a constitutional right to physician-assisted suicide, it did not rule that it is unconstitutional, either. Each state has been left to make its own laws in this regard. Some states have yet to act; many have made physician-assisted suicide explicitly illegal. Oregon has had legalized physician-assisted suicide since 1997. Experience there has shown that relatively few terminally ill patients request physician assistance with suicide. In the first 3 years after legalization, 91 patients out of 90,000 who died in Oregon availed themselves of physician-assisted suicide, yielding a rate of 1 per 1000 deaths. Prominent motivating factors were loss of autonomy and determination to control the way in which one dies.
Despite increasingly sophisticated prediction models, especially for patients who are critically ill, patients still rely on their clinician’s judgment for most assessments of prognosis. Instruments such as the APACHE III (the third version of the acute physiology and chronic health evaluation scoring system), which uses a combination of age, diagnosis, cause of acute illness, and a scale of physiologic parameters to predict mortality risk in acute illness, are unable to address issues of the burden of treatment or the patient’s quality of life. Long-range predictions for patients with slowly deteriorating conditions are even more difficult. Physicians must certify that a patient has 6 months or less to live in order for that patient to qualify for the Medicare hospice benefit. Similarly, the Oregon Death with Dignity Act asks physicians to predict, using reasonable judgment, whether a terminal illness will produce death within 6 months. Patients often seek a precise prognosis from their clinicians as they weigh the benefits and burdens of interventions and consider quality-of-life issues as well as survival. Unfortunately, neither clinician judgment nor prediction rules have proven accurate in predicting prognosis under these circumstances.
Decisions near the end of life are not all-or-nothing choices. The absence or presence of do-not-resuscitate orders (more accurately referred to as do-not-attempt-resuscitation orders) is often misinterpreted as instruction to the clinician either to do everything or to do nothing. This dichotomy is false.
Other medical interventions for seriously ill patients with similar prognoses may have very different outcomes. For example, a patient with New York Heart Association Class 4 heart failure from a cardiomyopathy may ask not to receive cardiopulmonary resuscitation but might choose to accept placement of an automatic implantable cardiovascular defibrillator or be given a “dobutamine holiday.” A patient who is dying from lung cancer might weigh the relative burdens and benefits of antibiotic treatment for pneumonia before deciding whether to treat the infection. The benefits and burdens of enteral feeding are highly influenced by the condition being treated. Most studies that have been done on the utility of enteral feeding for patients who aspirate have grouped all patients with feeding tubes together, which may not be appropriate. These scenarios illustrate some of the variables:
The balance between benefits and burdens is very different for each of these patients. Enteral feeding may or may not prolong their lives, and restrictions on eating could have a different meaning for each. The recommendations by clinicians to each patient or patient’s surrogate might include everything from feeding-tube placement and avoidance of taking food or drink by mouth to oral intake, as tolerated, for pleasure and the use of antipyretic medications for fevers. Before a choice is made, the patient or family must first clarify their priorities. The clinician can then decide how different approaches can best meet these goals.
Although most of the topics discussed above intimately involve the ethics of caring for cognitively impaired persons, some areas of particular concern for this population merit further discussion.
The ethics of truth telling has evolved considerably through the last half of the 20th century in mainstream American culture, breaking with the longstanding tradition of paternalism in medicine that advocated withholding bad news from patients in order to do no harm. In many other cultures, telling the truth is still not felt to be appropriate. In the United States, however, telling a patient that he or she has a dementing illness may be the last area of controversy about truth telling. Increasingly, both professional and lay people agree that patients with dementia should be given a chance to understand what is happening to them. The opportunity for the older person with early dementia to prepare legal documents (powers of attorney, a will, advance directives), to address personal issues, and to make plans is important. As therapies become available and research advances, it is imperative that persons with dementia be informed of their options and given the opportunity to voice their preferences, even though they may no longer be capable of giving fully informed consent.
Ensuring personal safety and avoiding harm to others are important concerns in caring for patients with dementia. Because of the very nature of the disease process and its effect on recent memory, patients may not perceive how they have changed; they may not be able to recognize when their problem interferes with their ability to make decisions. Some patients with dementia may not understand the consequences of their actions and may have difficulty planning because of frontal lobe dysfunction. This puts them at risk for behaviors that may endanger themselves or others, including unsafe driving, the continued possession of firearms, wandering, and socially inappropriate behaviors. Their care needs may exceed what their caregivers can provide, and they may be unable to understand the rationale for seeking help at home or for a sitter, day care, or nursing-home care. The clinician plays a crucial role in being able to objectively recognize when this has happened and to help the family or others to take the necessary steps to protect the patient and others.
Adults with intact decisional capacity not only have the right to make their own decisions but also always have the right to change their minds. Even when they become unconscious, their last competent statement was usually made close to the event, often with full knowledge of the decisions that will need to be made; the likelihood is low that their rationale for the decision or that their goals, fears, and pleasures had changed significantly. If life experiences do mold their thinking, or if new interventions or approaches to problems occur, they can alter their directive to fit with these changes. A person with a progressive cognitive disorder can change substantially over time. What brings pleasure and what causes fear or pain can change substantially from year to year; almost certainly a patient’s perceptions change greatly as the disease progresses. The demented person is unable to comprehend the future and slowly becomes more and more disconnected from the past. In some ways, the person with advancing dementia becomes suspended in time: the person loses his or her connection to previous and future selves, the essence of what many define as personhood. A demented person is tied to the decisions and perceptions of a previous self whom he or she may not even remember. The decisions made by this prior “self” may inform current decision making, even though that person did not know what he or she would need or want at this time. Therefore, conflict can arise between the previous directives made by that patient and what is best for the demented patient in the here-and-now (ie, what gives the patient pleasure and what may disturb him or her).
Relatives of persons with Alzheimer’s disease are increasingly interested in knowing their risk of having the disease. For relatives of those who have a clear autosomal dominant, known single-gene mutation, as is the case with Huntington’s chorea, genetic testing has proven useful when accompanied by safeguards of counseling and follow-up. In familial, early-onset Alzheimer’s disease, several gene mutations have been found that cause clusters of Alzheimer’s disease in families. For those clusters where the mutation is known, mapping and phenotyping may be helpful in conjunction with counseling. For most familial clusters, however, the genes responsible have not been identified, and testing is not useful.
The value of testing is less certain in the case of apolipoprotein E alleles, which may influence a person’s susceptibility or probability of having Alzheimer’s disease sometime in the future. Many people with the high-risk alleles do not get the disease, and many without it do. As long as there is no intervention that has been shown to significantly alter the course of the dementing process, it does not seem advisable to create anxiety when the predictive value of the test is so low.
See also Dementia ().
Although the ethics that apply to the treatment of patients in other settings apply to patients in the nursing home, some issues are brought more acutely into focus because of the setting and the concentration of patients with chronic and end-stage disease.
Until policymakers and clinicians paid attention to the resuscitation status of patients in nursing homes, residents were assumed not to be candidates for attempted resuscitation. It was rarely, if ever, attempted. Studies that have looked at the outcomes of attempted resuscitation of patients in long-term-care facilities show that it is used infrequently and is associated with low long-term survival. However, the number of patients in long-term-care settings for short-term recuperation and rehabilitation has grown, which may change the statistics concerning the utility of attempted resuscitation of nursing-home patients.
Staff perceptions of the utility of resuscitation efforts differ by profession. Nursing staff strongly prefer to limit interventions in this setting, especially for older patients and those with cognitive impairments. On the other hand, physicians tend to overestimate the benefit of interventions for these patients and sometimes hesitate to honor a do-not-resuscitate request for those who are not clearly terminally ill. Patient participation in the process is variable. Federal legislation requires the systematic inquiry into advance directives for all patients in institutions receiving federal funds. With the advent of this more systematic approach to discussions about treatment status, nursing homes have transferred fewer patients to acute-care settings, and yet patient and family satisfaction have not declined.
Regulatory agencies have encouraged enteral feeding of patients in nursing homes to prevent nutritional deficits in patients who may be failing to get enough nourishment by eating. Although the motives for enacting these regulations were compassionate, the usefulness of enteral feeding, especially for patients with advanced dementia, is questionable. Also, it is not ethical to use enteral feedings for a patient capable of taking oral sustenance but who may not be getting enough nutrition because a facility fails to provide patients with the help they need in eating. (See Malnutrition.)
The use of restraints in the long-term-care setting has become closely regulated and monitored. Studies have shown that using physical restraints has little, if any, value in preventing injuries from falls. Less restrictive alternatives are usually available. Clinicians and patients’ surrogates must consider several factors in deciding whether to use restraints. If the patient is engaging in activities that might harm other residents or staff, and when intervention is ineffective or the patient’s surrogate refuses it, then the institution’s responsibility to protect others may require that it send the patient elsewhere.
The allocation of resources in nursing homes is closely linked to the ability of nursing-home care to prevent complications of chronic illness. When staffing falls below a critical level, pressure ulcers, functional decline, depression, agitation, and the need for restraints may increase. Appropriate activities to meet the patient’s physical, cognitive, and emotional needs, although sometimes referred to as the “hotel” functions or “recreation,” are also part of the good medical care of these patients. The role of the nursing-home medical staff in monitoring and participating in this process needs further clarification.
Older persons with physical and cognitive impairments have as high a risk of motor vehicle collisions per mile driven as do teenage drivers. Physicians face complex ethical problems when caring for older patients who endanger themselves and others by driving. The conflicting values are powerful: respect for the patient’s autonomy, duty to protect the patient from harm, duty to protect others from predictable danger, and respect for patient-doctor confidentiality. Educating the patient and family members is often the key to developing a practical solution. Legal requirements regarding physician reporting of unsafe older drivers vary from state to state. In some states, physicians are required to report patients who may be unsafe; in other states they are permitted to do so; and in a few states, reporting may be considered a violation of patient-physician confidentiality. (See also the section on the older driver in Assessment.)
The ethical issues regarding the financing of health care have become much more salient in an era of rapidly rising costs and managed care. Health care professionals need to be aware of the forces, both positive and negative, exerted by payment structures on the nature of the care delivered. Ideally, providers, aware of these forces, will take maximum advantage of the positive forces and work to guard against the negative forces when caring for patients. The two major care payment structures to health care providers, fee-for-service and capitation, influence care differently.
Fee-for-service (FFS) care means that the provider receives payment for each service rendered. The built-in advantage of an FFS method is that providers have an incentive to be thorough in diagnosing and treating of patients; the more services a physician provides (and documents), the more he or she is paid. Patients receiving FFS care may be more reassured that the doctor is doing everything possible to care for them. The potential disadvantage of FFS care is overtreatment of patients, resulting in unnecessary iatrogenic morbidity and mortality as well as increased costs.
About 85% of older adults receive care from “traditional” Medicare, a system that compensates physicians under an FFS arrangement (see Financing, Coverage, and Costs of Health Care). Medicare FFS providers have relative incentives to provide covered benefits and disincentives to perform noncovered services. The primary method of controlling overall costs in an FFS system is to carefully delineate which services are covered and to discount payments for those services. The catalogue of Medicare-covered services is published as the Current Procedural Terminology coding system. One of the most common areas where physicians may feel pressured to stretch the truth, or to lie outright, is in the coding of conditions and procedures in order to make sure that patients will not be left liable for bills.
Capitation means prepayment for the care of a patient population on the basis of the number of patients, regardless of the amount of care the physician provides. Under the Medicare Advantage option (formerly the Medicare Plus Choice option), which is selected by about 15% of Medicare beneficiaries, health plans (not individual providers) receive capitation from the Centers for Medicare and Medicaid Services (formerly the Health Care Financing Administration) on the basis of the number of enrollees (see Financing, Coverage, and Costs of Health Care). Capitation arrangements provide incentives for the prevention of serious (and costly) conditions, commonly through the use of disease management programs, health promotion efforts, and care management. Analysts describe capitated care as proactive and FFS as reactive. The chief concern regarding capitation is an inherent underservice bias; the less that is spent on the patient, the more the provider or plan may profit. Physicians receiving capitation, or any other incentive to restrict costs, have an ethical obligation not to undertreat their patients.
■ AGS Ethics Committee. Informed consent for research on human subjects with dementia. J Am Geriatr Soc. 1998; 46(10):1308–1310.
The AGS Ethics Committee outlined nine positions, each with accompanying rationale, as guidelines for appropriateness of the informed-consent process in research using persons who have dementia. The positions encompass discussions of types of research, surrogate consent, advance consent on the part of the potential subject, and need for subject’s assent to participate.
■ Marson DC. Loss of competency in Alzheimer’s disease: conceptual and psychometric approaches. Int J Law Psychiatry. 2001; 24(2–3):267–283.
This is a review of the literature on competency and Alzheimer’s disease. The author looks at the cognitive changes that happen with progression of the disease, the psychometric measures of these cognitive functions, and their impact on decisional capacity.
■ Post SG, Whitehouse PJ. Fairhill guidelines on ethics of the care of people with Alzheimer’s disease: a clinical summary. Center of Biomedical Ethics, Case Western Reserve University, and the Alzheimer’s Association. J Am Geriatr Soc. 1995; 43(12):1423–1429.
Drawn from the content of discussions with patients and families, these guidelines discuss ethical issues of common concern for patients with dementia. Topics covered include truth telling, driving privileges, respecting choices (autonomy, capacity, and competence), dilemmas of behavioral control (including wandering, use of physical restraints, polypharmacy), and death and dying (thresholds of quality of life).
■ Quill TE, Lee BC, Nunn S. Palliative treatments of the last resort: choosing the least harmful alternative. Ann Intern Med. 2000;132(6):488–493.
Using clinical examples, the authors discuss five alternatives that may effect the time of death of patients in the terminal stages of illness: forgoing any therapies that might be life sustaining, accelerating opioid therapy for pain, physician-assisted suicide, stopping eating and drinking, and terminal sedation without hydration.
■ Sullivan AD, Hedberg K, Fleming DW. Legalized physician-assisted suicide in Oregon—the second year. N Engl J Med. 2000;342(8):598–604.
This is an analysis of the patients who had been reported to have been given lethal doses of medicine in the second year of legalized physician-assisted suicide in Oregon. Percentage of deaths and patients’ underlying diagnoses are discussed.
■ The Hastings Center. Guidelines for the Termination of Life-Sustaining Treatment and the Care of the Dying. Bloomington, IN: Indiana University Press; 1987.
This is an older reference, but one that has stood the test of time. It has excellent definitions of terminology and straightforward presentation of the issues involved in care of the dying patient, surrogate decision making, and end-of-life decisions.
Margaret A. Drickamer, MD