A Consensus-Based Approach To Providing Palliative Care to Patients Who Lack Decision-Making Capacity

As we grow older the world becomes stranger, the pattern more complicated of dead and living.-T.S. Eliot, East Coker Mrs. B. is a 73-year-old woman with severe Alzheimer disease. She is a retired schoolteacher and has a husband and daughter. For the past 3 years she has lived in a nursing home and requires assistance with all of her basic activities of daily living. Mr. B. visits her daily and feeds her lunch. In the past several weeks, she has taken longer to finish small portions. At times, she coughs while being fed. One morning after breakfast, Mrs. B. develops agitation, a cough, and a temperature of 100.3 F. Palliative care is designed to relieve a patient's suffering in order to maximize dignity and quality of life (1). Respect for a patient's autonomous choices is a foundation of western bioethics, but a patient with severe dementia can no longer decide whether to receive predominantly palliative care or to continue potentially life-prolonging therapy. Other people, such as family members and caregivers, must choose for the patient. The goals and values of these decision makers may conflict with those of each other and with those of the patient, who now lacks the capacity to participate in the decision. Conflicts are especially likely in decision making about two common clinical problems: aspiration pneumonia and neurogenic dysphagia. These problems engage deep values about feeding, starvation, and the meaning of care for a patient with severe dementia (2). Furthermore, a patient's residence in a nursing home introduces additional problems related to regulations governing the management of a patient's weight loss and nutrition (3). How can a busy internist address these problems in a manner that achieves consensus among decision makers? This case study illustrates an approach to developing palliative care plans for patients with severe dementia. At a meeting with Mr. B. and the daughter, the physician explains that aspiration pneumonia is a common problem in severe stages of dementia caused by irreversible and progressive loss of the ability to chew and swallow food. Mr. B. agrees that his wife has had trouble eating, and he describes how on some days she eats very little of even her favorite foods. To prompt the family to tell more about their perception of how Mrs. B. has changed, the physician asks, I know that Mrs. B. was diagnosed with Alzheimer's over 7 years ago, but I have only known her for the last few months. Can you tell me how she seems to you now, and how things have changed compared to when she was first admitted? The family's story begins with a summer vacation cut short when Mrs. B. fell and was hospitalized for 10 days. She never fully recovered and subsequently experienced a progressive loss of function over the next 7 years. The physician responds to the story by saying, I think I have a better understanding about how things have changed over the past few years. It sounds like both you and she have done the best you could through a difficult situation. You know that Mrs. B. has an incurable, progressive, and ultimately fatal disease. I can't say for sure when she'll die of her Alzheimer's disease, but given its severity, we shouldn't be surprised when she does. Even if she does recover from this pneumonia, she will not recover her swallowing function. Recognizing this, we ought to care for her in a way that makes us confident that after she's gone, we can say she was treated with dignity and respect. I use two principles to help think through the decisions we face. First, consider your understanding of what Mrs. B. would want if she could tell us. Second, we should balance the burdens and benefits of each option in terms of its ability to relieve her suffering and maximize her dignity and the quality of her remaining life. This narrative begins an emotional and meaningful dialogue that should lead to a consensus about the best way to care for Mrs. B. given her clinical circumstances. This consensus-based approach is distinct from a discussion in which individuals simply share their opinions, but there is no genuine attempt to reconcile their differences. The process and pitfalls of consensus building will vary depending on the patient's clinical condition, the family dynamics, and the level of preexisting trust or conflict in the physicianpatient-family relationships. Nonetheless, the physician can guide this dialogue by using goals and steps that are outlined in Tables 1 and 2 and are discussed below. Table 1. The Core Principles with Which To Plan Palliative Care for Patients Who Lack Decision-Making Capacity Table 2. Steps to Providing Palliative Care to Patients Who Lack Decision-Making Capacity The physician's first step was to identify potential decision makers. If Mrs. B. had completed an advance directive that included a durable power of attorney for health care, that person would be her main representative in decision making. However, most patients in nursing homes do not have advance directives (4), and even when they do, the contribution of others, such as family and formal caregivers, can greatly assist the designated surrogate in decision making (5, 6). Even if the patient doesn't have an advance directive, the physician can turn to close family members and others who know the patient well with the assurance that the family's standing to serve as surrogate decision makers is established by both case and statutory law (7). Except in cases in which the patient has no family or has a family that does not represent the patient's best interests, the physician is under no moral or legal authority to seek a guardian (a forthcoming paper from the American College of Physicians-American Society of Internal Medicine End-of-Life Care Consensus Panel will focus on legal issues) (7, 8). After identifying the decision makers and clarifying Mrs. B.'s diagnoses, the physician then encouraged them to describe the course of Mrs. B.'s dementia by asking the husband and daughter how Mrs. B. has changed. The purpose of this dialogue is to achieve a consensus among decision makers about the patient's current disease state, prognosis, quality of life, and previously stated values (5). This sharing of narratives may expose important differences in beliefs and understandings in any of these domains that must be reconciled before consensus-based decision making can proceed. The more the physician understands these various perceptions, the more likely he or she is to develop a plan that will respect Mrs. B. as a person. Even when the physician has a long-term relationship with the family and patient, this step in consensus building should not be skipped. Research showing that physicians often inadequately understand their patients' preferences for health care supports this point (9-11). The next step in consensus building is to begin a dialogue about prognosis and about the potential role of palliative care. This was done with the phrase that began Unfortunately, Mrs. B. has an incurable, progressive, and ultimately fatal disease . Although this physician believes strongly in a palliative approach that includes pain and symptom management and avoidance of invasive treatments for patients with severe Alzheimer disease, he must respect that others may value an approach in which available medical technology must always be used to prolong life. Before a consensus about what might be included in a palliative approach for a particular patient is possible, the physician must learn what treated with dignity and respect means in this family. Finally, the physician guided the family on ethical standards for decision making: 1) Consider what is known of the patient's wishes and preferences given her current condition [for example, a living will or potentially relevant statements made when the patient was competent] and 2) balance the burdens and benefits of each option in terms of its ability to maximize Mrs. B.'s dignity and quality of life. Deciding how to care for Mrs. B. by using only a rigid understanding of her past preferences may fail to respect her present circumstances (12). Achieving consensus about her current quality of life, although a subjective and personal process, incorporates the family's, physician's, and health care team's perceptions of her circumstances into what is known about her past preferences and values. Missing from these recommendations to the family is an exclusive appeal to futility as grounds for decision making. Futility refers to the claim that no desirable benefit can be achieved by potentially life-prolonging treatment (13). Physicians frequently cite futility as their reason for terminating further treatment (14). Although the concept of medical futility exists to communicate extremely poor prognosis, it can also inadvertently convey an unequivocal, unilateral, and negative judgment about a patient's quality of life without leading to an explicit discussion of these issues from the differing perspectives of physicians and families. Furthermore, too frequently, the term connotes that nothing more can be done for a patient, that further intervention would be meaningless, or that her life is of no current value. Therefore, a physician who relies exclusively on futility as a reason to pursue palliative care can obscure an honest discussion of how people understand and value the patient's continued existence and of the range of possibilities for palliative and life-prolonging interventions. Mr. B. and the daughter agree that Mrs. B. never expressed clear preferences about how she should be treated. The physician reassures them that they can still work on a plan. He outlines the options, including transfer to the hospital or staying at the nursing home with or without antibiotic therapy, and explains his view of their benefits and burdens: A helpful way to think through these choices is to come to some consensus upon her current quality of life, and then decide what options