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Journal of Clinical Oncology, Vol 26, No 1 (January 1), 2008: pp. 157-159 © 2008 American Society of Clinical Oncology. DOI: 10.1200/JCO.2007.12.3224
Just Say Die
From the Division of Medical Oncology/Hematology, Sunnybrook Health Sciences Centre; Department of Medicine, University of Toronto; and University of Toronto Joint Centre for Bioethics, Toronto, Ontario, Canada Corresponding author: Scott R. Berry, BSc, MHSc, Toronto-Sunnybrook, Regional Cancer Centre, 2075 Bayiew Ave, Toronto, ON M4N 3M5, Canada; e-mail: scott.berry{at}sunnybrook.on.ca INTRODUCTION As a medical oncologist, I spend most of my time treating people with incurable cancers. Depending on the person and the specific illness that person has, that question may come on the first visit with me or on the tenth: "How long have I got?" It may come out of the blue or as part of a larger discussion about the progress of their disease. I will say, "It may be only a few months until the end " or "until you pass away, " but I rarely say exactly what I mean: "It's only going to be a few months until you die." Die is a short, simple word. The problem is that I rarely use it when I speak to my dying patients, and I don't think I'm alone. Quality end-of-life care is an ethical imperative, and improving conversations about the end-of-life is an important part of improving that care.1 Although it's acknowledged that discussions about dying are important, little has been written about the words we use during these discussions.2 I would like to examine why it is so difficult for physicians to use the word "die," and why it may be so important that we use it more often. WHAT DO PHYSICIANS SAY TO THEIR DYING PATIENTS? Do physicians actually have a hard time using the word "die" with their dying patients? As far as I am aware, there are no empiric studies that have attempted to answer this question. However, two previous articles in the Art of Oncology in this Journal shed some light on this question.3,4 The articles did not describe a rigorous study; they illustrated how eight experienced cancer physicians responded to the question, "How long do I have?" in a role-play situation. An actress played the part of a young mother who had an advanced pancreatic cancer resistant to chemotherapy. She asked each of the oncologists, "How much time do I have?" In the responses, only one physician uttered the word "death." After a sensitive and honest attempt to answer the woman's question, the physician's last comment was, "What thought have you been giving to your death and what you want?" This was a contrived situation with a select population of participants, so it would be wrong to generalize or draw too many conclusions from this exercise. However, it is noteworthy that in eight separate conversations with a dying woman, only one oncologist said the word "death." The fact that this was a role-playing exercise with an actress might have allowed the physicians to use more direct language than they might normally use. Instead, the physicians spoke about death and dying with euphemisms and vague references, some of which are highlighted in Table 1.
Of course, it's not as simple as the Table suggests. The comments on the right cannot replace the ones on the left without considering the relationship the physician has with the patient and the context of the conversation. Using euphemisms and avoiding using "death" and "dying" may be appropriate in some situations, but should be the exception and not the rule. Yet it seems that these oncologists went to great lengths to avoid saying what they truly meant. The question is why? AVOIDING HARM OR AVOIDING CLARITY? One of the reasons physicians find end-of-life discussions so difficult is the belief that these exchanges, and in particular using the words "death" and "dying," could distress our patients.4,5 Avoiding harm is a central tenet of our ethical conduct as physicians. However, it is possible to use the words "death" and "dying" in talking to seriously ill patients, as long as it is done sensitively; their use may actually avoid harm if they clarify the discussion. Do we need to use the words "death" or "dying" if we feel our patients prefer more indirect language, as long as they understand the message being conveyed? I think we do. Euphemisms may soften the shock of bad news, but they also might confuse or mislead patients. Some patients’ hearing the type of remarks highlighted in Table 1 may understand the underlying meaning, but many may not. In an outpatient study of preferences for end-of-life discussions, patients emphasized the need for honesty and had confidence in their own ability to handle frank information.6 Physicians’ concern about harming patients may not be the only issue. Some physicians may avoid frank and honest language because of their own distress in dealing with patients who have received bad news.5 IMPROVING OUR RELATIONSHIPS WITH PATIENTS Clearly, the quality of an end-of-life discussion may influence the quality of the relationship we have with a patient. Forthright and clear exchanges will help nurture and develop better relationships while confusing discussions could cause irreparable harm. Death and dying are painful and emotionally charged issues. These words cannot just be thrown into the discussion for clarity's sake; they must be used with care and understanding to let patients know what physicians really mean. As Loprinzi et al suggest, "Such stark and life-changing information needs to be shared sensitively if it is to deepen, rather than injure, trust between patient and physician."4 Some of the most important talks we have with our patients will be those where we need to discuss their approaching death. These discussions help us understand how they view their future and their prognosis. Oncologists get to know their patients’ personalities well as they care for them, and our conversations (and the words we use in those conversations) are tailored for that individual. Will using the words "death " or "dying" be the right thing for every patient or conversation? No. But used appropriately, these words could help improve our discussions about death with many of our patients. DEATH AS FAILURE Another obstacle to physicians talking about death is the way in which Western culture, and in particular Western medical culture, perceives death. John McCue eloquently summarizes this transformation: "Dying, which was once viewed as natural and expected, has become medicalized into an unwelcome part of medical care. It has been distorted from a natural event of great cultural significance into the end point of untreatable or inadequately treated disease or injury. Worse, death has become medicine's enemy—a reminder of our limitations of medical diagnosis and management. Viewing dying and death as merely a failure of medical diagnosis... trivializes the final event of our lives, stripping it of important nonmedical meaning for patients, family, and society. Respect for the wholeness of life requires that we not debase its final stage."7 It is not hard to see why physicians might have trouble talking about death and using the word death; we live in a culture where many physicians and patients may see death as an admission of failure or of giving up. As death takes on this unnatural place in medical care, it is no wonder we have trouble speaking its name. But how can we start the "renaturalization" of death if we can't even say the word to our patients? The "medicalization" of death has evolved gradually, and it will be difficult to reverse the process. But I suggest that part of this process may be reintroducing the words "die" and "death" into our discussions about dying. The longer we avoid using these words, the clearer the message to our patients will be that death is something taboo, and not a natural part of life. While concerns with admitting personal or professional failure or having to deal with a distraught patient may influence some oncologists’ use of the words "death," there may be a simpler explanation in some cases. For the patients we have known for many years and with whom we have developed deep bonds, we may not want to use the word "death" because we are starting to feel our own sense of loss and the beginning our own grieving. THE SCHOLARSHIP OF DEATH AND DYING Even scholars skirt the issue. Look at the references at the end of the article—the phrase "end-of-life" appears several times more than "dying." It's not "quality care of the dying" but rather "quality end-of-life care."8,9 The American Medical Association has sponsored a successful project that educates physicians on "end-of-life care." Four words connected by hyphens where one word would do. Are we trying to put a positive spin on the issue (should we be putting a positive spin on dying?) or is it obfuscation? Have you ever heard anyone say, "It's been 10 years since Grandpa's ‘end-of-life.’" I respect the fact that there are good reasons for using the term "end-of-life care." This is not just about the act of dying or the moment of death, but the months or years leading up to those events, yet there is still something slightly Orwellian about the phrase. After all, wouldn't we find it absurd to have "beginning-of-life discussions" with parents of a new baby rather than discussing the birth of their child? Scholars could learn from the Robert Wood Johnson Foundation initiative called "Project on Death in America." It is a simple and direct title, and I can remember being struck by its frankness when I heard it for the first time. Seeing the "experts" on death and dying use the word "die" will be a good example for the physicians who read their work. JUST SAY DIE Physicians are making progress in talking to their patients about dying. Field's recent review suggests that physician's are increasingly willing to disclose terminal diagnoses to patients.10 It's time to take the next step in opening up the discussions we have with our dying patients. The next time you must let someone know they are dying, the best way of doing this may be to say, "You are dying." It's more than just semantics. Using the word "die" will clarify our conversations with patients and let them know that death doesn't need to be considered unnatural or a failure. Reintroducing words like "death" and "dying" into those conversations will allow us to take better care of our patients as they live, and as they die. AUTHOR's DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The author(s) indicated no potential conflicts of interest.
NOTES Author's disclosures of potential conflicts of interest and author contributions are found at the end of this article. REFERENCES
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Copyright © 2008 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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