Hope for the Best, and Prepare for the Worst

Mr. J., a 40-year-old father of two young children, has metastatic nonsmall-cell lung cancer that has not responded to two different chemotherapy regimens. His physician, Dr. B. , explains that the cancer is progressing. Mr. J. says, Isn't there something you can do? Please don't give up on me. Dr. B. pauses and says, Well, there is an experimental protocol we could try. When faced with life-threatening illness, patients and physicians often feel that they must choose between hoping for disease remission and preparing for death. Mr. J. wants to fight the cancer in hope of living longer, and his physician is reluctant to discuss palliative care issues because she does not want to destroy his hope (1). Dr. B. knows that a patient in Mr. J.'s situation rarely benefits from third-line chemotherapy, and she also knows that by offering aggressive treatment she may be colluding with Mr. J. to avoid discussing the most likely prospectthat he is dying (2). Dr. B. is unsure how to proceed. When patients and physicians discuss life-threatening illness by focusing exclusively on hope, they may miss important opportunities to improve pain and symptom management (3, 4), respond to underlying fears and concerns, explore life closure (5), and deepen the patientphysician relationship. The difficulty for physicians is acknowledging and supporting the patient's hopes while recognizing the severity of the patient's disease, thus offering an opportunity to discuss end-of-life concerns. Hoping for a cure and preparing for potential death need not be mutually exclusive. Both patients and physicians want to hope for the best. At the same time, some patients also want to discuss their concerns about dying, and others probably should prepare because they are likely to die sooner rather than later. Although it may seem contradictory, hoping for the best while at the same time preparing for the worst is a useful strategy for approaching patients with potentially life-limiting illness. By acknowledging all the possible outcomes, patients and their physicians can expand their medical focus to include disease-modifying and symptomatic treatments and attend to underlying psychological, spiritual, and existential issues. Framing the Discussion This strategy of simultaneously hoping for the best and preparing for the worst may initially seem inconsistent and contradictory: How can you talk about chemotherapy and palliative care? Our strategy embraces the divided thinking many patients, families, and even health care providers have, which is often not logically consistent because of the profound ambivalence and vacillation they experience. This strategy is derived, in part, from classic studies of human behavior during illness. Sociologists Glaser and Strauss (6) described patients who experienced an open awareness of their impending deaths and discussed it explicitly with family and caregivers. KublerRoss (7) built on this work by describing stages of dying, culminating in a stage she called acceptance. However, most patients do not progress linearly through KublerRoss's stages. Living with a terminal illness is often marked by ambivalence about being a dying person. Weisman (8) described a period of middle knowledge, in which patients vacillate between the state of continuing to live and plan and the state of preparing for death. Similarly, McCormick and Conley (9) interviewed patients who spoke of a livingdying period late in their illness. These studies and others (10, 11) indicate that vacillation between living and dying is common to many patients like Mr. J. Using this strategy frames the discussion to include both living and dying. It may seem paradoxical to simultaneously explore living and dying, since these states are mutually exclusive in common parlance. However, this framing may enable Dr. B. , Mr. J., and Mr. J.'s family to have a deeper conversation than if they focused just on dying or living. The following guidelines are useful. 1. Give Equal Air Time to Hoping and Preparing Dr. B. wants to be empathic and realistic: I want to work with you, and I will do everything I can to optimize your chances. I am hoping for the best. I think that, at the same time, we need to prepare for the worst in case the treatment is not effective. Mr. J.: Hope is really important to me. By articulating hope and preparation at the outset, Dr. B. gives Mr. J. permission to discuss a wide range of topics. An introductory statement such as I have found it helpful to hope for the best and, at the same time, prepare for the worst allows the patient to discuss the topic he feels is most important or is most comfortable with. For patients like Mr. J., who want to discuss hopes first, we recommend following the patient's lead to fully explore hopes and place those hopes in the context of the patient's disease process. Other patients may need to prepare for their potential death before they can commit wholeheartedly to active treatment. 2. Align Patient and Physician Hopes Dr. B: Could you tell me more about what you are hoping for? That will help me do a better job for you. There are legitimate reasons why physicians should encourage patients to hope, such as disease remission or improvement in health status. Hope is a critical element for coping with illness (12). Most patients expect and want physicians to be advocates for health and longevity. Even if the media frequently exaggerate the power of medicine, many patients have beaten the odds. Patients frequently cite hope as the most important element of their coping and seek clinicians who will search every avenue of hope (13). Physicians also want to hope for the best. Many physicians pursued medicine because they wanted to cure diseases, make patients feel better, and help relieve suffering (14). Articulating hopes for extending a patient's life can affirm this aspect of medicine. Some medical therapies, such as chemotherapy, make patients feel worse in the short run. To give these therapies day after day requires that oncologists believe in their ability to provide long-term benefit. Providing hope to patients is psychologically gratifying because patients and families are often grateful to doctors who hope. Shared hopes offer physicians an opportunity to align with their patient. 3. Encourage but Do Not Impose the Dual Agenda of Hoping and Preparing Dr. B. : It's good for me to know about your hopes. It helps me get to know you better. Do you also want to talk about your concerns if things do not go as we hope? Mr. J.: I'm really committed to trying this new treatment, and I feel like you are kind of giving up on me with this preparing for the worst stuff. Dr. B. : I share your hope that the new treatment will benefit you. I want you to have the best medicine available. I talk about hoping for the best and preparing for the worst with all my patients who are seriously ill. Preparing for the worst doesn't mean I'm giving up on you; it helps me arrange the best medical care for you, no matter what happens. When physicians initiate a conversation about preparing for the worst, patients and family members may react with fear, sadness, anxiety, or anger. Blocking or ignoring such emotions sends a nonverbal message that the physician is uncomfortable in discussing the worst and discourages patients from honestly discussing their concerns (15). There can be positive consequences for patients who prepare for the worst, which physicians can underscore, and these can be powerful motivators. By preparing for the worstby making a living will, naming a health care proxy, preparing financial matters, or settling family affairspatients can address fears, clarify priorities, and strengthen relationships with loved ones, all components of a good death identified in empirical studies of patients with life-threatening illnesses (16, 17). Furthermore, some patients may be thinking about the worst but are afraid to discuss it for fear of frightening their family or disappointing their physician. One study indicates that unarticulated concerns correlate with increased anxiety and depression (18). Naming and discussing these concerns, which often deal with spiritual and existential issues, is an important first step for patients. Physicians can also benefit from discussing the worst. These discussions allow physicians to feel that they are being honest with patients and, if done in the context of a supportive relationship, can increase patient trust. Patients and families who prepare for a range of outcomes may be less likely to blame their physicians for the consequences of disease progression. 4. Support the Evolution of Hope and Preparation over Time Mr. J.: I don't want to think about preparing for the worst. Dr. B. : It sounds like this is hard to think about. Mr. J.: You bet it is. Dr. B. : I wonder if you could say what makes it hard to think about? Mr. J.: [pause] I'm worried that my wife won't be able to deal with this. Knowing why a patient is reluctant to discuss these matters is important data for the physician. It may be enough to note the patient's hesitance about the discussion and plan to return to the issue at a future visit. Often the seed is planted even if it is not specifically discussed. Mr. J.'s willingness to talk about preparing for the worst may slowly increase over successive discussions as he begins to trust that his physician will hope and prepare at the same time. Time the initial discussion early in the illness, and revisit the issues regularly. Talking about hope and preparation allows big picture discussions to begin. By regularly visiting the issues, physicians can normalize the idea that talking about death is one aspect of discussions between a patient and physician. The issues can then be revisited at times when a change in strategy is contemplated and the relative emphasis on relief of suffering and treatment of disease is brought into question. Time and disease progression may enable a pati