Discussing Treatment Preferences With Patients Who Want Everything

A 75-year-old man with oxygen-dependent chronic obstructive pulmonary disease, dialysis-dependent chronic renal failure, and peripheral vascular disease has been hospitalized 3 times in the past 3 months for impending respiratory failure. His performance status is progressively decreasing, but he still enjoys some aspects of his life. He values his independence and has difficulty adjusting to his progressive disability. When an intern appropriately asks about setting limits on invasive treatment, such as cardiopulmonary resuscitation (CPR) and mechanical ventilation, the patient replies, I want everything. (This case is a composite based on many patients we have seen under similar circumstances.) Physicians whose patients ask for everything might reasonably conclude that the patient is asking for every imaginable treatment, no matter how harsh, invasive, or unlikely to be of benefit. One obvious course of action is to write a full codeno limitations order in direct response to the request. However, we believe that a more appropriate response, after physicians acknowledge the request, is to discuss the patient's underlying treatment values and nonmedical concerns and to provide accurate information about the patient's illness and prognosis (14). With that information, physicians can make more informed recommendations, and patients can make better decisions about what should (and should not) be done to help them achieve their goals (57). We review this approach to requests for everything and provide examples of how physicians can manage some aspects of the conversation. Step 1: Understand What Doing Everything Means to the Patient In our experience, the phrase do everything usually does not mean that the patient and family want every invasive and possibly life-prolonging treatment with a high burden and only a tiny chance of benefit (13). Rather, the request may reflect more nuanced wishes for how to balance the burdens and benefits of treatments and underlying affective, cognitive, spiritual, or family concerns. For some patients, everything means only treatments whose probability of helping outweighs the probability of aggravating suffering. For other patients, everything means any treatment that has even a remote chance of prolonging biological life for a short time regardless of its adverse side effects. Table 1 provides examples of differences in the ways patients may balance treatment burdens and benefits. Table 1. Different Treatment Philosophies Underlying Requests for Everything Table 2 outlines patient concerns that may underlie requests to do everything and gives examples of useful questions to ask. For some patients, wanting everything may be less about medical decisions that need to be made and more about fears associated with getting sicker, concerns that treating physicians will be less vigilant if the patient does not request all possible interventions (8), or worries about abandonment if the patient considers forgoing aggressive treatment and opting only for comfort (9). A question such as, What are your biggest worries (fears)? (10) might elicit some of these concerns. Table 2. Potential Underlying Meanings of Everything Other patients may be unaware of their true prognosis or the limited ability of medical therapy to influence their illness, and may reconsider their wish for invasive or life-prolonging technologies once they are fully informed about the high burdens and minimal benefits of these treatments (11). In the latter instance, the only way to figure out what the patient knows about his illness and the potential role of medical treatment is to ask such questions as, What have others told you about the status of your disease? , How is the treatment working? , and What does the future look like? The physician should offer information about treatment efficacy and burdens to ensure that the subsequent decision is as informed as possible (12) and follow up with a question, for example, Given what you have now learned about your disease, what is most important to you? (13). This follow-up question is important, because patients rarely want everything for its own sake. Rather, most patients want a specific outcome, and conversations about what they mean by everything may allow exploration of their hopes and goals for those outcomes. For example, most patients want a life that allows them to accomplish certain goals, such as talking to their family or being physically active. Those goals may change over time, such as when a patient is willing to tolerate a considerable risk for suffering to be alive for a grandchild's birth and is less willing to tolerate the same risk for suffering after the birth. Understanding what a patient means by everything requires an understanding of what the patient would consider a treatment success and how much the patient would be willing to go through for a chance at success (5). In contrast, some patients may find extension of biological life most important by far, regardless of the effect of treatment on quality of life. Often, this vitalist approach to treatment comes from a spiritual or religious context, and discussions about what the patient means by everything can lead to an exploration of the patient's beliefs about the relationship between the patient's religion and medical treatment (14). For example, some patients may believe that their religion requires that they try everything to stay alive. Others may think that only God should make the decision about when someone dies, and still others might request everything to give God time for a miracle. A deeper understanding of these beliefs may lead to very different answers about what everything means and point to resources other than biomedical expertise that might be pivotal in a patient's decision making. Because the social context of illness may be involved in requests for everything, exploring family dynamics is sometimes key to unlocking the underlying meaning and importance of these requests (15). As a general rule, begin with open-ended questions, such as How is your family (children, parents, spouse) handling your illness? , and watch for both verbal and nonverbal responses. Sometimes, this leads directly to responses that uncover critical family dynamics (for example, My wife insists I'm going to beat this, but I can't envision getting better from here, or, We haven't told the children anything yet), which must be explored, understood, and possibly resolved before any major decision about shifting goals of treatment can be made. Sometimes a family meeting is needed to help all individuals come to a common understanding of the patient's illness, prognosis, and future treatment goals. Finally, inquiring about potential concerns underlying requests for everything is a way to learn about the patient's and family's psychological and emotional status in response to the loss of health (16, 17). Kubler-Ross described stages of grief that have been empirically validated (18, 19), with patients and their families experiencing a mix of shock, denial, bargaining, depression, and acceptance. Asking for everything in response to an inquiry about setting medical limits may initially represent a reluctance to face painful emotions connected with the patient's loss of health and potential impending death, preferring instead to keep hope alive by avoiding any such discussion. Such requests may even touch on initially painful spiritual or religious issues (14), such as wondering how a caring God could allow such a tragedy to happen. In summary, physicians must not assume that everything means any and all invasive treatments unless they have explored what the patient is trying to express with the request (6, 20, 21). Neglecting to explore the underlying meaning of a request for everything may reinforce patients' denial of how critically ill and close to death they may be, potentially depriving them of the opportunity to progress through the grieving process. In addition, it may subject patients to unnecessary suffering by committing them to harsh treatment with little likelihood of benefit that they would not want if they were reassured of the physicians' commitment to their care or if they were fully informed about their prognosis. Step 2: Propose a Philosophy of Treatment After an adequate exploration of what the patient means by everything, the physician can then propose a philosophy of treatment consistent with the patient's values and priorities and the physician's own assessment of the patient's medical condition and prognosis: Given what we know about your illness and what I have learned about your priorities, it sounds like you would prefer the following balance of burdens and benefits in your treatment (Table 1 lists some potential riskbenefit balances that can be inserted). Such statements help the patient and family know that any subsequent recommendations are based on knowledge of their values and priorities. Patient and family should be invited to respond to this proposal by a follow-up question, for example, Does that make sense to you? , and any misreading of the patient's philosophy can then be corrected in subsequent conversation. Step 3: Recommend a Plan of Treatment Once the physician and patient have agreed on a philosophy of treatment, the physician can make a more specific recommendation about what should (and should not) be done to support the patient's treatment philosophy, given the patient's medical condition and prognosis. This often means making recommendations about CPR, intubation, and other invasive treatments, ideally framed in the context of how the recommendation to pursue or forgo interventions supports patient goals and philosophies. All recommendations should include careful attention to the patient's treatment philosophy. To avoid the patient feeling abandoned by the physician, clinicians should emphasize what will be done to achieve the patient's goals before talking about what wil