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Do Unto Others...

Dana-Farber Cancer Institute, Boston, MA

"Doc, what would you do?" We do not usually offer our advice to patients facing treatment decisions for a terminal diagnosis in the form of "If I were you, I'd do this..." We are concerned that we cannot be objective when imagining scenarios that involve our loved ones or ourselves. However, it is a reasonable question from the patient's perspective, as in knowing the stocks your broker is buying, or on which house your real estate agent would put an offer.

In this issue of the Journal of Clinical Oncology, Matsuyama et al¹ present a systematic overview of the literature regarding patient preferences for chemotherapy near the end of life. They found that the balance of research indicates that patients would choose chemotherapy for much smaller improvements in outcome than would health care providers. A common interpretation of this finding is that we should not impose our opinions on patients because we have a different perspective than they do. Options should be presented in a balanced manner, and the patient should choose among them. The fact that they often choose to pursue treatment means that recently observed trends toward increasingly aggressive care near the end of life may actually be consonant with patient desires and, therefore, appropriate.

But why are our patients choosing a course that we ourselves would not take? An alternative interpretation of the findings is that we are not communicating to them the information that leads us to choose differently. Is this because we are unable? Do we lack the tools to convey the pros and cons of treatment? Or do we find it too emotionally distressing? Is it because we choose not to be completely honest in an attempt to preserve hope? Or is it because patients are unable to accept what we are telling them?

Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be. We, on the other hand, have shepherded many patients through this journey toward death. The knowledge that this experience provides is important. When we studied focus groups exploring issues around aggressive anticancer treatment near the end of life, we found that all stakeholders recognized and acknowledged the problems related to continuing chemotherapy late in the disease course: complications resulting from cytotoxic treatment in patients with poor performance status and organ dysfunction, and lost opportunities to realize the benefits of hospice and supportive care.² However, there were subjective differences in how these were viewed. Patients with terminal cancer, who by virtue of still being alive had not experienced the whole course of their disease, less strongly supported the concept of overly aggressive care as a potential measure of quality of care. On the other hand, bereaved family members interviewed 6 months after the death of their loved one had a very different perspective: "I think the earlier the doctor mentions [hospice], the better it is ... because the patient could plan for things ahead, rather than to spend so much time doing the treatment." Similarly, physicians reflecting on anticancer treatment agreed "there is a time to stop." Perhaps, then, if patients could look back from the grave, they would have chosen differently. With this knowledge, why is there this gap between these informed opinions and the decisions our patients make?

Systematic overviews of the literature are sometimes more useful for what they do not find. Another important observation the authors made is that there is a paucity of accurate sources of information (and no decision aids) for patients making end-of-life treatment choices. It is often difficult to communicate the risks and benefits of palliative chemotherapy. If there is a 30% chance of response and another 30% chance of stable disease, what proportion of patients should we say benefit? Quality-of-life measures can help, but are often plagued by missing data, especially from the patients whose quality of life is deteriorating. How do we relate to the patient in front of us that the patient in the 50th percentile is living 6 weeks longer? Toxicities that do not reach grade 3 can still be miserable, yet we usually do not have much data on them. Moreover, we know that group data do not apply to the individual. Still, we usually have a sense of whether a patient is more or less likely to either realize benefit or experience toxicity than the average in the group. We need to find ways to translate the arcane end points we report in our studies to help an individual patient reach a good decision.

Even if we had the tools to communicate, however, there is evidence in this article that we would not always use them. Certainly we have all encountered patients who prefer not to know anything about their prognosis or refuse to believe it once it is conveyed. However, surveys suggest that the majority of patients do want an accurate estimate of prognosis, even if it is poor. Physicians, on the other hand, have reported a reluctance to provide survival estimates to patients, and that the majority of the time they would consciously over- or underestimate what they believed to be the facts. In most cases, this is done to preserve hope. There was a time in the not too distant past when patients often were not even told they had cancer because of a fear that they could not cope with the diagnosis. It turns out most can cope.

Well-intentioned mistruths can actually be detrimental to patients. Data are presented in the article that patients with unrealistic expectations were more likely to choose aggressive antineoplastic treatment, but lived no longer and were more likely to die in intensive care on life support. An overly rosy prognosis deprives patients of the ability to make truly informed decisions about whether to take chemotherapy rather than a final, important, and meaningful trip. As an example of real consequences related to the opportunity costs of not knowing the truth, in one case oncologists were sued for failing to provide a realistic prognosis to a pancreatic cancer patient who, as a result, neglected to properly put his affairs in order.³ In that case, the California Supreme Court noted that "patients are dependent on their physicians for truthful information" and that "the doctor-patient relationship (is) a ‘fiduciary’ or trust relationship rather than an arms-length business relationship." The Court did not go so far as to mandate disclosure of statistical information to all patients as part of informed consent for treatment, however, which was the narrow focus of that particular legal action. The finding in the article by Matsuyama et al¹ that patients learn more about their prognosis and the effects of treatment from other patients in the waiting room than from their oncologists is a stunning indictment.

Matsuyama et al¹ pose the question in the title of their article, "Why do patients choose chemotherapy near the end of life?" In some cases the answer appears to be because they do not know any better, rather than because they truly have different preferences. This is not a call for a return to paternalism in decision making. Rather, we need to recognize our own discomfort with the limitations of our treatments and find the best ways to provide honest information. Decision aids can help impart facts, but there is also a need to fulfill our role as expert advisers. We must combine interpretation of objective data with clinical judgment about a particular patient's situation and not be afraid to make a recommendation about what we think will be best for them. Surely that is what we would want to have done for us if we were in their situation.

Author's Disclosures of Potential Conflicts of Interest

The author indicated no potential conflicts of interest.

REFERENCES

1. Matsuyama R, Reddy R, Smith TJ: Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol 24:3490-3496, 2006[Abstract/Free Full Text]

2. Earle CC, Park ER, Lai B, et al: Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol 21:1133-1138, 2003[Abstract/Free Full Text]

3. Annas GJ: Informed consent, cancer, and truth in prognosis. N Engl J Med 330:223-225, 1994[Free Full Text]

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• Why Do Patients Choose Chemotherapy Near the End of Life? A Review of the Perspective of Those Facing Death From Cancer
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