The competent practice of geriatric medicine requires physicians and other clinicians to master both a body of knowledge about how to diagnose and treat geriatric health conditions and an ethic to apply this knowledge to the care of their patients. In general, the ethics of patient care focus on using the principles of respect for autonomy and beneficence. Perhaps, one of the most important mechanisms to apply these principles is informed consent: the voluntary choice of a competent patient. In these respects, geriatrics is just like fields such as cardiology and endocrinology, which have carved out a particular focus of research, education, and practice and share a common ethic to guide the care of patients.

However, geriatrics differs from other fields of medicine in a number of distinct and ethically substantive ways. Most fields are largely organized around an organ system, such as the gastrointestinal system, or around pathology, such as cancer. But geriatrics is organized around a group of persons defined by a label: the elderly. Being elderly does not simply equate to an organ system or pathology. Instead, it describes a stage in a life course, with an indeterminate beginning and features constructed out of a matrix of biological, social, political, and cultural conditions. For example, geriatric patients are often defined as persons aged 65 years and older. This age cutoff, while precise, is constructed out of the legislation that defines eligibility for state or federal retirement and health care benefits.

Of course, all medical practice is, in some manner, bound to social, political, and cultural conditions. For example, concepts of mental illness are influenced by concepts of what is “normal behavior.” Geriatricians face the challenge of negotiating the fungible borders between illness and normal aging, and between living and dying. This means that mastery of the common ethic of medicine is necessary, but it is not sufficient. This chapter addresses the ethics of medicine focused on the care of elderly patients. The focus is an ethic that addresses the relationship between the patient and the clinician—informed consent—and particular issues in informed consent that are important for the competent practice of geriatric medicine: diagnostic disclosure, advance care planning, quality of life, refusal of treatment, withdrawal and withholding of treatment, and surrogate decision making. We will also discuss the conditions that underlie decisions: voluntariness and the system of care.

The ethical foundation of making decisions with patients is informed consent: the voluntary choice of a competent patient following adequate disclosure of the relevant facts. Competency is an essential guiding principle to assure that clinicians strike a proper balance between protecting patient autonomy and promoting patient welfare. In other words, competency provides a tool to balance the two ethical principles of respect for autonomy and beneficence. A competent patient should be allowed to choose even if the choice is harmful or “goes against medical advice.” In contrast, an incompetent patient is not allowed to choose. This denial of choice is not because the clinician objects to the patient’s choice but because the patient cannot make a choice. Chapter 13 defines and discusses how to assess competency and decision-making capacity. The point of this section is to address three challenges in the practice of informed consent.

Informed consent originated largely from surgical cases whose essential theme is as follows. A patient suffers a harm after an intervention such as lower extremity paralysis after an aortic angiogram. The patient argues that when the intervention was agreed on the clinician did not inform about the chance of hemiplegia and had the clinician told about it, the patient would not have agreed to the intervention. From these surgical cases grew an ethical model of informed consent, applicable not only to surgical procedure but to all of medical practice.

The model is that a clinician provides the patient facts about the decision, verifies that the patient has adequate decision-making abilities to use these facts in making a decision, and then practices care based on the patient’s choice. This model describes patients who desire information and control over the decision and want their care guided by their values. It is seen as a remedy to a clinician making unilateral decisions for patients based on the clinician’s preferences and values, that is, paternalism.

Informed consent is a vital ethic to guide medical care. In certain kinds of decisions, informed consent is useful to facilitate decision making. These include a choice between interventions with very different kinds of risks and benefits (such as surgery vs. medical therapy vs. watchful waiting for prostate cancer), decisions that are highly personal and value laden (such as advance care planning, which is discussed in more detail below), and decisions that are not part of the formal physician–patient relationship (such as enrollment in research). As useful as informed consent is, there are at least three challenges to its practice.

First, informed consent may not be the ethic that a patient wants to follow. Specifically, many patients describe an asymmetry between their desire for information and their desire to make their medical decisions. In particular, elderly patients often indicate that they want their physician to give them information but they want the physician to make the decision. This asymmetry is often greatest in the case of decisions about the management of serious and life-threatening situations. In these cases, patients will describe decision making built on trust and identification with their physician.

The second challenge to the practice of informed consent is effectively communicating medical information. Much of medical information is probabilistic. This means that the occurrence of an event, such as a fall, is bounded by a chance. Such information can be expressed numerically using figures such as an odds ratio or percentage, or qualitatively using expressions such as “rare” or “likely.” Each of these presents challenges to the practice of informed consent. People—both patients and clinicians—have difficulty with quantitative expressions. This numerical illiteracy means that people may misunderstand information. Related to this is the ambiguity of qualitative expressions such as “rare,” which can mean 1% to one person and 0.001% to another. Finally, biases often influence people’s decisions as well as clinicians’ communication of information and, thus, should be addressed in the communication of information.

Related to the challenge of communicating medical information is a third challenge: Many patients have impairments in their cognition as a result of geriatric conditions such as dementia and delirium. These impairments can limit a patient’s decision-making abilities, specifically the ability to understand, appreciate, and reason through information. Consequently, their capacity to make a decision is impaired to the degree that they are incompetent to make the decision. In these situations, the traditional model of informed consent simply cannot hold. The clinician has to talk to another person, commonly called a proxy or surrogate.

Table 34-1 summarizes these challenges to the practice of informed consent and for each challenge suggests strategies to address them. A general strategy is to reject a “consumer model” of informed consent wherein the patient is the “informed customer” and the clinician a kind of “service provider.” A more useful strategy is one grounded in the relationship between physician and patient. In this relationship, doctor means “teacher” (from the Latin doctore) and consent means “to feel together” (from the Latin con plus sentire). Taken together, these concepts mean that the geriatrician’s practice should recognize that patients, like students, have different kinds of learning needs and skills.

Some patients are quick studies who take charge of the task, while others need careful tutoring and even prompting. Some simply cannot be taught or do not want to be. In each of these cases, the goal is to create a shared understanding of the relevant facts and the patient’s values. These skills are essential for all of medical decision making. The issue is not that some patients are more or less intelligent than others, but that some patients, even very intelligent ones, choose not to control decision making. Below, we discuss additional skills needed to address common challenges to making decisions with older patients: diagnostic disclosure; advance care planning; quality of life; refusing, withdrawing, and withholding treatment; and decisions at the end of life.

Disclosing a Diagnosis of Alzheimer’s Disease

In the care of persons with Alzheimer’s disease, diagnostic disclosure is an ethically and clinically challenging issue. On the side for disclosure is the argument that patients deserve the truth and to deny this information to them is to deny an adult’s right to the truth. The argument against disclosure is that not all truth is good to tell, especially to a person who may be harmed by it. In ethical terms, these competing arguments square off as a dilemma between respecting the principles of autonomy versus beneficence and nonmaleficence. In short, is it better to be honest but risk cruelty or kind but risk paternalism? Two issues resolve this question: a person’s capacity and desire to know the diagnosis and the moral challenge that Alzheimer’s disease presents to the family of a person diagnosed with it.

One critical step in living with an illness is to understand and appreciate it. Understanding is about knowing the facts. In the case of a person with a chronic illness, it means knowing what the illness is, what stage the patient is at, what to expect in the future, and what can be done to maximize quality of life. In contrast, appreciation describes how well a person recognizes how facts apply to him- or herself. This ability is distinct from understanding because it refers to integrating knowledge into one’s sense of self.

In the case of persons with Alzheimer’s disease, several studies have shown that many persons with mild-stage Alzheimer’s disease can understand information. Although they may not remember it, when taught, they are often able to provide a relatively accurate restatement of the facts when asked to summarize what they have learned. This information ranges from descriptions of clinical trials for Alzheimer’s disease and treatments for Alzheimer’s disease to issues such as voting.

Appreciation is a complex issue in persons with Alzheimer’s disease. It is often mixed. A patient may appreciate one feature of the disease, but not another. In the case of appreciating Alzheimer’s disease, there are at least three features: the diagnosis, the severity, and the prognosis. Studies examining appreciation show that patients may appreciate one of these features but not the other. That is, patients may be aware of their diagnosis, but not the severity and prognosis. Or, patients could be aware of the severity and prognosis of their cognitive problems, but not the diagnosis.

These findings suggest that to argue either for or against diagnostic disclosure as the standard of care for the class of persons with very mild-to-moderate Alzheimer’s disease oversimplifies the issue. It treats the class of persons indiscriminately when, in fact, patients differ in ethically relevant ways: some know there is something wrong, see that it has gotten worse, and have even figured out or remembered that they were told that they have Alzheimer’s disease, while others do not.

Diagnostic disclosure depends on the capacity of the persons to understand and appreciate the diagnosis, their expressed desire to know what is wrong, and the emotional and moral impacts that this knowledge may have. Decisions concerning disclosure should also account for the role of the caregivers and the power they hold over the patients. Table 34-2 describes a four-step approach a clinician can use to assess whether and how to disclose a diagnosis of Alzheimer’s disease.

Advance Care Planning