Mr. E is a 35-year-old man with advanced AIDS who has recently been diagnosed with AIDS-related dementia. When he still had decision-making capacity he told his partner, but not his close family members, that if he ever “lost his mind” because of his HIV infection, he would want to receive only comfort measures for any new medical problem. During the past two weeks Mr. E’s caregivers have noticed that he is having increasing difficulty breathing. In view of his medical history they think he probably has a recurrence of Pneumocystis carinii pneumonia (PCP). Mr. E is brought to the hospital for a chest X-ray to confirm these impressions. This shows probable PCP. The physician knows that Mr. E has had a lot of difficulty with adverse drug reactions in the past and wonders whether or not the patient should be admitted to the hospital for further investigations and treatment.
Mrs. F is an 83-year-old widow with advanced chronic obstructive pulmonary disease (COPD) and osteoporosis. Approximately six months ago Mrs. F was hospitalized for six days because of an acute exacerbation of her COPD. Since discharge, her breathing has not improved to her prehospitalization status. Three months ago, she moved into a nursing home because of her deteriorating health and difficulty in caring for herself. In the nursing home, she has shortness of breath at rest, which is made worse with eating. Her closest family members are her three married children. One daughter lives in the same city, and the other two children live more than an hour away by car. Earlier today, Mrs. F’s breathing deteriorated suddenly and she was transferred to the hospital for assessment and treatment. When she is seen in the emergency department she is confused because of either respiratory failure or the toxic effects of an infection. Blood analysis reveals hypoxemia and respiratory acidosis. The attending physician wonders whether or not Mrs. F should be intubated, especially if her situation does not improve with additional bronchodilators and steroids. She has never required intubation before, and her hospital records give no instructions with regard to resuscitation. Mrs. F’s daughter has just arrived and is waiting to talk to the physician.
Patients with decision-making capacity may accept or refuse medical recommendations and this often occurs after they weigh the trade offs between likely benefits and risks of a proposed test or treatment. Healthcare providers assess the medical situation and offer recommendations, but patients’ preferences and values reframe the information into patient-centered decisions. When a patient loses the capacity to participate meaningfully in the decision at hand, a mechanism must exist to make decisions that represent the patient’s goals, preferences, and interests. This mechanism is substitute decision making, and it usually occurs when a spouse, partner, close family member, or friend assumes this responsibility on behalf of the incapacitated patient.
This model of decision making is based on two principal assumptions: the individual is the primary decision maker and decisions are the result of a rational weighing of benefits and risks. Both of these assumptions can be challenged. It is important that healthcare providers know whether their patients and substitute decision makers share these values. For example, in some cultural groups, the family unit or the oldest male is the appropriate decision maker. Therefore, although the remainder of this chapter proceeds assuming the dominant model of the rational, individual decision maker, healthcare providers need to be sensitive and responsive to cultural differences.
The approach to medical decision making described above is rooted in the Western tradition of respect for patient autonomy and the right to self-determination (Buchanan and Brock, 1989). It is expressed most clearly in the practice of informed consent. Substitute decision making is an attempt, albeit an imperfect one, to extend patients control over their own healthcare after they can no longer exert direct control.
Healthcare providers often believe that they know what is best for the patient. Historically, healthcare providers frequently made decisions for patients without discussing it with them or their family members. However, the power to make medical decisions has been tempered over the last several decades, with greater appreciation for sharing information with patients and an appreciation for the patient’s moral authority to decide what is done to his or her body. Moreover, healthcare providers often have values that are distinct from those of their patients and have difficulty predicting accurately their patients’ preferences for life-sustaining treatments (Uhlmann et al., 1988; Seckler et al., 1991; Tsevat et al., 1995). This lack of understanding of patients’ preferences has even been demonstrated with physicians who report having talked to their long-term patients about their preferences and values (Uhlmann et al., 1988).
Under certain conditions, healthcare providers may experience moral distress when caring for patients who have lost decision-making capacity. For example, when hospital-based healthcare providers confront major decisions for patients without decision-making capacity and without a substitute decision maker, there may be uncertainty about how to proceed. Uncertainty, by itself, and the decision to continue all active therapies without clear guidance anchored to goals of care are challenging situations for clinicians. The decision to keep treating without guidance also occurs when family members disagree about the right course of action. These situations have been associated with moral distress, especially for nurses, and moral distress is associated with burn-out and turnover (Jameton, 1984).
In the USA and Canada, for instance, the legal approach to substitute decision making has primarily been two-pronged. In association with passage of the Patient Self-Determination Act (1990) and growing interest in advance directives, laws have been passed that enable individuals to designate the person they wish to make healthcare decisions for them once they lose decision-making capacity. In addition, laws pertaining to informed consent have given family members the right to make decisions on behalf of incapacitated patients. In some statutes, a hierarchy of substitute decision makers is provided. For example, in the state of Washington, the order of surrogacy is the court-appointed guardian, healthcare agent (through a durable power of attorney for healthcare), spouse, adult children, parents, and adult siblings (Washington State Legislature, 2006). An alternative to family-based substitute decision making is using the courts, such as assigning a court-appointed guardian. This mechanism exists in both the USA and Canada.
Substitute decision making is an important part of policies of healthcare facilities and professional organizations. For instance, the Canadian Medical Association policy on resuscitative interventions includes provisions related to substitute decision making (Canadian Medical Association, 1995). Similarly, the American Geriatric Society endorses the value of substitute decision making for patients who have lost decision-making capacity (American Geriatrics Society Ethics Committee, 1996). In the Veterans Health Administration (VHA), the largest healthcare system in the USA, the informed consent policy refers to substitute decision makers as surrogates. The policy states that, when a patient lacks decision-making capacity, the practitioner must make a reasonable inquiry as to the availability and authority of an advance directive naming a healthcare agent. If no healthcare agent is authorized and available, the practitioner must make a reasonable inquiry as to the availability of other possible surrogates according to the order of priority (legal guardian, spouse, adult child, parent, sibling, grandparent, grandchild, close friend) (Veterans Health Administration, 2003). This policy also outlines procedures for managing disagreements between healthcare providers and substitute decision makers.
Empirical studies pertaining to substitute decision making have primarily focused on the role and experience of the substitute decision maker, and the level of concordance between patients’ preferences and those of substitute decision makers. When patients are asked who they would want to represent them, the majority opt for their own family members (High, 1994). Although the primary role of substitute decision makers is to make healthcare decisions, their role is more complicated. Substitute decision makers usually try to do the right thing for their loved one while realistically taking into consideration their own interests. They also try to present to the healthcare providers a more holistic picture of their loved one than that of a patient. In addition, they often serve a role in safeguarding the loved one’s dignity (Chambers-Evans and Carnevale, 2005).
Research has demonstrated that family members have difficulty predicting accurately their loved one’s preferences for life-sustaining treatments (Uhlmann et al., 1988; Pearlman et al., 2005). This has been shown even among family members involved in a study of advance care planning (Pearlman et al., 2005). Yet, if a conflict were to arise between a patient’s prior wishes and what the substitute decision maker believes to be the best decision, patients prefer that the substitute decision maker’s decision take priority over their previously stated wishes (Terry et al., 1999).
Any individual can become so sick that they cannot speak for themselves. Consequently, asking who is the preferred substitute decision maker should occur early in the development of a patient–provider relationship. In the outpatient setting, this can be raised in the context of getting to know the patient and his or her preferences better. Some patients lose decision-making capacity when they are hospitalized for an acute illness. Therefore, hospitalization is another opportunity for raising the question of substitute decision making.
Healthcare providers are able to identify patients at increased risk for losing decision-making capacity. They also understand that patients with families in conflict or without family pose a high risk for future problems should the patient lose decision-making capacity. Therefore, healthcare providers should target these patients for discussion about substitute decision makers if the need arises. These high risk situations include:
The substitute decision maker should be the person or persons with the best knowledge of the patient’s specific wishes, or of the patient’s values and beliefs, as they pertain to the present situation. In general, close relatives are preferred as substitute decision makers in the belief that they will know the patient well enough to replicate the decision that the patient would make if he or she were capable. However, the patient may be estranged from his or her spouse, parents, children, or siblings, and in some instances a friend will know the patient’s wishes best.
In order to help patients to decide on the ideal candidates to be their substitute decision makers, healthcare providers may review with patients the following attributes:
Sometimes a substitute decision maker is not available or appears to be making decisions that conflict with the patient’s previously expressed preferences or best interests. In these circumstances a substitute decision maker may need to be appointed by a court of law. In many jurisdictions this takes significant amounts of time and adds to the costs of care (Teno et al., 1995).
The task of substitute decision makers is not to decide how they would want to be treated were they in the patient’s situation but, rather, to decide how the patient would want to be treated. This is critically important, and healthcare providers must help to ensure that substitute decision makers understand this role. The criteria on which the decision should be based are: (i) the specific wishes previously expressed by the patient; (ii) if specific wishes are not known, the patient’s known values and beliefs; and (iii) if neither specific wishes or values and beliefs are known, the patient’s best interests. Patients’ wishes are those preferences expressed while they had capacity that seem to apply to the decision that needs to be currently made. Values and beliefs are less specific than wishes but allow substitute decision makers to infer, in light of other choices the patient has made and their general approach to life, what patients would decide in the present situation. Despite the best intentions and most sincere efforts of those involved, it sometimes remains unknown or unclear what the patient would have chosen. When good information about patients’ wishes, or values and beliefs, is lacking, or when the available information is contradictory, decision makers may be forced to make a judgement as to patients’ best interests in particular circumstances. The calculation of a patient’s best interests is based on objective estimates of the benefits and burdens of treatment to the patient.
When relatives disagree, they should be encouraged to focus their attention on the question of what the patient would want to be done given the current goal of treatment or what is in the patient’s best interests. Both of these questions need to be answered with an understanding of the current goals of care. For example, a patient’s preference for a treatment, especially a life-sustaining one, usually varies depending on whether the goal of care is palliative comfort care or curative treatment. Often, disagreements between family members abate over time because a shared understanding of the clinical situation and prognosis develops. Chaplains may be of assistance, especially if one or more family members are invoking religious interpretations or perceiving religious implications of the decision. On occasion, a court-appointed guardian becomes involved to help to decide which of the family members should be the official decision maker.
Often substitute decision makers never anticipated that they would be in this role. The role was not previously discussed with the patient, and so they often feel unprepared. Healthcare providers can initiate the discussion with patients and their loved ones about substitute decision making.
Of course, helping them engage in a meaningful and useful conversation becomes the more challenging step. It is important for patients and their family members to know how decision making would likely occur without explicit planning. If a friend or unmarried partner is the desired substitute decision maker, then in some areas these individuals might be excluded from the decision-making process unless they were formally appointed as a healthcare agent. For example, in the USA the appointment of a healthcare agent is the mechanism to empower a non-family member, and this occurs through a durable power of attorney for healthcare.
The next task for healthcare providers is to guide patients and their surrogates through a discussion. Often, these discussions immediately focus on cardiopulmonary resuscitation (e.g., do-not-resuscitate orders) or what should be done if the person ended up in a permanent coma (Tulsky et al., 1998). More nuanced discussion is required. One increasingly popular approach is to identify whether there are any particular situations in which the patient would not want to receive life-sustaining treatment. This might be prolonged coma, severe dementia, or dying anyway from a terminal illness. Studies have shown that a “state worse than death” usually leads people to want to forgo life-sustaining treatments (Patrick et al., 1997). Thus, the identification of these conditions can serve as a proxy for preferences about treatments. Three questions can help to focus this conversation
If patients decide to formalize preferences through an advance directive (Ch. 10), then healthcare providers should reinforce the importance of ensuring that substitute decision makers have access to the document (and any future updates). Moreover, the healthcare provider should ensure that the information is readily available in the medical record to ensure that other providers, if needed, have access to this information.
Healthcare providers need to understand and be trained in their important role of facilitating the process of substitute decision making by providing information that will enable the substitute to make an informed choice on the patient’s behalf. Healthcare professionals should guide substitute decision makers to consider the patients’ previously expressed wishes, values and beliefs, or best interests (in this order). When it is apparent that the substitute decision maker is making a choice that is significantly different from what the patient might have chosen, healthcare providers find themselves in a difficult situation and should seek advice from colleagues, ethics consultants, or legal counsel.
Mr. E is incapable of participating in the decision making because of AIDS-related dementia. The physician speaks to Mr. E’s partner, who agrees that he would not want to be admitted to hospital to undergo any invasive procedures. The partner believes he would want to go home, perhaps with supplemental oxygen therapy to relieve some of his distress. He tells the physician that after his last episode of PCP, Mr. E instructed him that he would never wish to go through the necessary treatment again. Before palliative home oxygen therapy is arranged, Mr. E’s family members arrive at the hospital and express the desire that he receive “everything,” including aggressive life-sustaining treatment if indicated. Mr. E’s partner talks to the family and shows them a durable power of attorney for healthcare form that Mr. E completed that empowers him to make medical decisions on his behalf. After a series of discussions, the family members appreciate the importance of respecting Mr. E’s preferences and values, including having his partner function as the primary decision maker on his behalf. Jointly, the healthcare agent (i.e., the partner and formal substitute decision maker) and the family agree to palliative home oxygen. The patient is sent home with hospice follow-up and dies comfortably several days later.
Mrs. F is judged to be temporarily incapacitated during this COPD exacerbation. After discussing the patient’s incapacity, the physician asks the daughter whether she knows what her mother would want if the situation deteriorates further. The daughter says that Mrs. F’s quality of life has been declining since her dad died two years ago, but seems to have taken a marked fall recently since the latest hospitalization. Although she has never discussed this sort of situation directly with her mother, she does not think that her mother would want resuscitation (CPR) or mechanical ventilation. However, she is uncomfortable making this decision on her own. The physician suggests that she consult with her siblings. The physician says that in the meantime everything possible will be done to avoid intubation; however, intubation will proceed if it becomes medically necessary. Two hours later the daughter reports to the physician that all of the children feel that Mrs. F would refuse CPR and intubation if she had the capacity to communicate her wishes. Although the physician makes it clear that Mrs. F might be able to make this decision herself if she recovers from the current episode, the daughter requests that “do not intubate” and “do-not-attempt-resuscitation” orders be placed on the patient’s chart. The rationale is that the family members believe (and the physician concurs) that their mother’s recovery, at best, would be short lived, and that she would not want to spend her remaining days suffering with shortness of breath. The physician agrees to write the order and plans to discuss it with the patient if her capacity improves.
An earlier version of this chapter has appeared: Lazar, N. M., Greiner, G. G., Robertson, G., and Singer, P. A. (1996). Substitute decision-making. CMAJ 155: 1435–37.