HONESTY AND HOPE
Falsehood is so easy, truth so difficult. George Eliot, Adam Bede
How should we address the problem of overtreatment? One response to patient and family requests for treatment that is futile or falls outside the parameters of professional standards is to abide by such requests. We could simply accede to demands and give patients and families what they ask for. In support of this approach it could be said that patients and families, not health professionals, are on the receiving end of care; they must live through the experience of overly burdensome care and futile treatment. If there is meaning and value in this struggle, then why should it be denied to them? One way of understanding such a strategy might be that pursuing even unlikely and statistically small life extensions can have value for patients and families who place value on both current life and on hope, where “hope” is defined as the current consumption of the prospect of future survival (Menzel, 2011). Thus, one possible justification for overtreating patients is that it provides patients and families the benefit of hope.
Another argument in support of such an approach is that it is more humane and compassionate to let patients retain false beliefs if such beliefs offer comfort. According to this approach, fidelity to truth is misplaced at the EOL. The physician's highest duty is not to disclose the unvarnished truth, but rather to offer patients and families solace in a situation that is otherwise grim. Arguing along these lines, Lantos and Meadow (2011) urge physicians to resuscitate so-called slow codes. They argue that physicians should give the impression of aggressive resuscitative efforts when patients or families request this, even though no genuine effort need be made. In support of such an approach, they claim it is “kinder and gentler” because
it signals caring, avoids confrontation, and nurtures hope. In this manner, patients can be spared the painful truth for as long as possible.
Yet this approach belies the true meaning of hope. “Hope” does not mean the same thing as refusing to give up. After all, consider the case where a person refuses to give up and insists on making her best effort, without having any hope that such efforts will bear fruit or be successful (Menzel, 2011). For example, a provider may attempt CPR, fully expecting that it will fail to resuscitate the patient. Here, the provider is refusing to give up, despite having no hope. Under these circumstances, “current consumption of the prospect of future survival” does not come into play as an added benefit of overtreating. Moreover, a hope that interferes with the hopeful person's engagement with and ability to pursue her own values is best thought of as “false hope” (Groopman, 2003). Like moral distress, false hope is at odds with a person's underlying thoughts and feelings. Like selfdeception, it encourages a person to look away from reality and construct an alternative story.
A more promising response to patients' or families' requests for inappropriate treatment is to begin early on a process of encouraging honesty and frank communication about the goals of treatment and the range of medically appropriate treatment choices. The American Medical Association, Council on Ethical and Judicial Affairs recommends such an approach. The council instructs physicians to routinely engage patients in ACP regardless of their health status or diagnosis; assist patients with thinking about their values, perspectives on quality of life, and goals if faced with a life-threatening illness or injury; and encourage patients to make their views known to family members and intimates (American Medical Association, 2010). The council notes that outcomes in EOL care are strongly related to ACP, especially the quality of communication between clinicians and patients. While the primary value supporting ACP is respect for patient self-determination, the practical outcome of this approach is to ease burdens on family members and other surrogate decision makers by providing guidance for health care decisions. Another practical effect of ACP can be to uphold the value of honesty in facing medicine's limits, and the limits of life and quality of life. Thus, ACP done well helps to prevent patients from receiving care they do not desire, and helps to prevent denials of medically appropriate care they would want at the EOL.
Despite these advantages, it may feel easier in the short run to put off distressing moments for another day. After all, continuing to pursue aggressive treatments, however burdensome, often requires making no change. Thus, everyone may be tempted to think that no decision has been made. By contrast, being truthful about a patient's poor prognosis may require changing the course of treatment, and this in turn may create discomfort. For providers, honesty in the face of a patient's impending death or deterioration may feel like an admission of failure. For family members, being
truthful about a patient's situation may require grappling with the loss of a loved one, and of a relationship central to one's life and identity. For patients, honesty may require confronting death and the dying process.
Yet, despite the difficulty of facing such choices, dealing honestly with patients is an ethical requirement. This requirement is based primarily on the more fundamental idea of respect for patient autonomy. The ethical principle of autonomy holds that patients should be allowed to be selfdetermining and self-governing when they are able. This means not only that health care providers should not stand in the way of what a competent patient wants to do, they should also work to facilitate patient autonomy by providing patients with the information required to make an informed health care decision. The American Medical Association, Council on Ethical and Judicial Affairs recognizes veracity, a commitment to truth and accuracy, as one of the fundamental elements of the patient–physician relationship, and acknowledges the patient's right both to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives (American Medical Association Council on Ethical and Judicial Affairs, 1999). Upholding patient autonomy requires not only comprehensive, accurate, and objective transmission of information to the patient, it also demands a process of communication and ACP that fosters the patient's understanding and future goals (Beauchamp & Childress, 2008). An important part of ACP is encouraging patients to use advance directives (ADs) to formally convey their wishes about medical decisions in the event that they become incapacitated in the future and are unable to make their own health care decisions. Tools, such as the living will and durable power of attorney (DPOA) for health care, are important means for patients to ensure that their values are upheld.
ADs have recently come under fire on a number of grounds. Critics argue that people cannot accurately predict what medical treatments they would want in the future, either because they do not have sufficient knowledge and experience to know, or because they have false preconceptions or misunderstandings about what is at stake. For example, the findings of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT Principal Investigators, 1995) demonstrated that people who thought they would not want certain treatments change their minds when actually faced with a decision to decline treatment and die. Individuals have also been shown to overestimate the impact that having a specific disability will have on their lives, for example, discounting the many positive aspects of their lives that would remain and would be unaffected by the disability (Fried, Bradley, & O'Leary, 2006; Loewenstein, 2005; Loewenstein & Schkade, 1999; Ubel, 2006). Yet, proponents of ADs note that such concerns do not show that ADs should be dispensed with, but show instead the need for more education and support on the part of health care professionals. Some of the limitations of ADs arise because these tools
may be narrowly constructed, static documents that leave little room for individuals to fully explore and express their wishes. Recent proposals provide promising avenues for addressing these and related concerns (Levi & Green, 2010). All things considered, it is better for patients to make the best decision they can make on behalf of their future selves, with as much support as possible, rather than not weighing in at all on future health care choices. As part of a larger process of ACP, ADs can help people grow in their understanding of what is important to them in their life, and in the process of their life's ending.
Despite acknowledging the value of ACP, it has been argued that tools such as ADs are of limited practical value because only a small percentage of people, even among those with life-threatening illness, ever avail themselves of these tools (Schneiderman, Pearlman, Kaplan, Anderson, & Rosenberg, 1992). In response, it can be said that the use of ADs, and the broader practice of ACP, are unlikely to become a routine part of health care without structural changes in the organization of health care and health care reimbursement. For example, until providers are reimbursed for offering assistance with ACP, rather than expected to do so without compensation, the practice is unlikely to become widespread. This was the idea behind a proposed section of the 2010 national health care reform legislation (the Patient Protection and Affordable Care Act [PPACA]), entitled “Advance Care Planning Consultation.” This section called for reimbursement for a clinician visit in which the clinician explained ACP, living wills, the role of a health care proxy, and orders regarding life-sustaining treatments. Unfortunately, this section of PPACA was distorted by politicians and commentators into a mandate by which older and disabled individuals would be forced to forego life-sustaining treatment (Tinetti, 2012). Thus, despite the fact that seriously ill patients are at risk for receiving highly burdensome care with limited or no benefit, there was little public support for PPACA's ACP proposal. The fact that politicians and the media were able to mislead large segments of the public into equating ACP with “death panels” designed to deny patients necessary treatment is instructive. It suggests the public is fearful that they will receive too little, not too much, care (Fried & Drickamer, 2010).
In addition to patient fears about being denied medically needed treatments, substantial proportions of patients may not want to plan for their EOL care, believing that it is better to take things one day at a time, that it is impossible to plan the future, or simply finding it too difficult to contemplate serious illness and death (Fried & Drickamer, 2010). This suggests that even if reimbursement structures were amended to encourage ACP, providers will continue to encounter obstacles. Inevitably, some patients and families will face medical choices for which they have not prepared. To increase utilization of ACP requires health care facilities and communities to create a climate that encourages critical conversations among providers and patients so that patients feel empowered, rather than threatened by, the
prospect of ACP. Providers need to educate patients about using ACP as a tool to strengthen their self-determination and support choices among a range of medically reasonable alternatives (Tulsky, 2005).
Realizing these values requires humility on the part of physicians, as well as heightened awareness of the hidden messages their statements can have for patients and families. Solomon (1993) conducted in-depth interviews with 20 physicians identified as caring for the highest proportion of critically and terminally ill patients at a university-affiliated teaching hospital, and described empirically how physicians think and talk about the concept of futility with their patients. The physicians reported feeling extreme distress, including anger, resentment, and uncertainty, when asked to provide what they considered to be futile treatments. Many felt that insistence by families on the provision of treatment was “both a burden on patients and an abrogation of the physician's responsibility to make professional judgments” (Solomon, 1993, p. 232). Solomon also found that “part of their angst comes not simply from the pressure to provide burdensome treatment, but also from an inability to find the right language and conceptual framework for talking about the problem with patients and families” (Solomon, 1993,
p. 232). Physicians used the concept of futility in conversations with patients both to denote medical efficacy and to render evaluative quality-of-life judgments, but appeared unaware of the evaluative component. Thus, we generally distinguish between a physiological effect, on the one hand, and a benefit to the patient, on the other hand. A ventilator, for instance, may produce a physiological effect on the patient's body, such as keeping the lungs breathing, yet still be futile because it does not benefit the patient. When the focus is exclusively on producing effects, rather than benefits, providers can easily miss opportunities to engage in values discussions with patients and families. According to Solomon (1993), “All but one physician seemed unaware of the double meaning they ascribed to the word [futility]” (p. 233). Physicians must be prepared to be open and honest about their personal and professional values, even when these diverge from the patient's or family's. They also must be prepared to accept whatever reasonable option the patient or family decides upon. Physicians should refer patients to appropriate providers when requested treatments violate their personal values. Likewise, when a provider regards a treatment as clearly futile, but there is a lack of professional consensus or no clear standard of care, a referral should also be made to a provider willing to offer the treatment (Schneiderman & Jecker, 2011).