older women holding each others hands

Bioethics Forum Essay

Palliative Care vs. Cancer Research

The death of former first lady Barbara Bush at age 92 was noteworthy in many ways. She was by all accounts smart, sharp and funny, and a fine, helpful wife to one president and mother to another. Her death last week after a long illness, with her husband at her side, was a model of palliative care success. She had decided to stop treatment to prolong her life in favor of comfort care.

On the same week as her funeral, the New York Times published a perceptive article by Dr. Robert M. Wachter, of the University of California, San Francisco, on palliative and end-of-life care, “The Problem With Miracle Cancer Cures.” It had nothing to do with Barbara Bush, but it focused on making difficult decisions near the end of life. Specifically, it discussed making decisions about the use of new immunotherapies that show promise for some cancer patients whose cases were once considered hopeless. Until recently, these patients would have been offered only palliative care.

Immunotherapies have generated the kind of excitement that always greets medical breakthroughs. The trouble is that only 15% of patients with advanced cancer who have received one of these treatments benefit from it, and it is impossible tell in advance which patients they will be. That less-than-good news is not improved by the fact that some patients suffer from terrible side effects.

Dr. Wachter has wise advice in response to some obvious questions about this therapy. Patients should be aware that palliative care can be provided in tandem with aggressive cancer treatment. Physicians need more training to have the “hard conversations in the light of the new cancer treatments,” he wrote. “Doctors will need to become more at ease with the prognostic ambiguity and better versed in the possible benefits and harms of the new therapies.”

The only thing missing in Dr. Wachter’s fine article is what is often missing in analyses of end-of-life decision-making: how should patients or prospective patients (all of us) think about and make sensible judgments and choices? The conventional answer is that we should decide “based on our values” or some variant of that phrase. That is a reasonable answer, but it is rare to hear what those values ought to be (or might be).

I believe the process of determining your values should have three ingredients. One of them is to ask yourself how long a life you would–or should–consider sufficient. Try to come up with a plausible answer in light of the way you have lived your life, and that will make sense to your family and close friends. Based on the news accounts, Barbara Bush’s final days seemed to meet that test.

Second, how much stress, pain, and misery are you willing to put up with before stopping active treatment and accepting only palliative care?  We each have different tolerance levels for pain as well as the emotional turmoil that can go with critical illness. As someone with advanced COPD, an ability to breathe at times that is more of a terror than pain, I suspect that context might make a great difference. In college I was a long-distance swimmer, and my teammates were breaking world records. To compete at that level requires a willingness to put up with near suffocation, as bad as anything I have experienced with COPD. But the misery seemed wholly worth it. Not surprisingly, most other swimmers chose shorter, less stressful distances.

In the context of lethal illness, I suspect that the relevant considerations come down to the goals of life one has at that point. Barbara Bush, who also had COPD, had lived as full a life as anyone could ask for. Not many of us will live to 92, mainly in good health, much less to raise such a successful family. There is an important difference between not having anything worth living for and deciding that one has lived a full life and is ready to accept death.

The third ingredient for identifying the values that should influence your decisions about end-of-life treatment options is to consider the needs of those close to you. You might agree to a cancer treatment with a low probability of success and a high probability of side effects if you have dependent children or a sick spouse.

There are two other matters worth considering for those who must make end-of-life decisions. One I will call an emotional bias, the other a medical care reality. After laying out the pros and cons of the immunological miracle cancer cures, Dr. Wachter betrays a subtle bias toward palliative care, going a step further than recommending a combination of palliative care and active treatment. “Let us be sure we don’t rob dying patients of a smaller, more subtle miracle: a death with dignity and grace, relatively free of pain and discomfort,” he writes in his last sentence.

I have no idea whether there is solid data available to show whether the treatment trend is for dying cancer patients to choose experimental treatments, palliative care only, or some combination of both. A 2013 Pew Research survey, the latest available, found a striking rise in recent years in the percentage of patients wanting “everything possible” done to save their lives, going from 15% in 1990 to 31% in 2013. Although she does not cite those statistics, they are consistent with the argument laid out in Sharon Kaufman’s striking book, Ordinary Medicine: Extraordinary Treatments, Longer Lives, and When to Draw the Line. In essence, her thesis is that medical care in the United States can be likened to a powerful seemingly unstoppable conveyor belt that pushes our care to ever more technology, longer lives and poorer dying, commercial captivity, and an enhanced fuzzy line between “life giving therapies and too much treatment.”

I think that last phrase is true and a plague on our health care system. In general, it would be fair to say that a cancer treatment with staggering research costs, a success rate of 15%, and miserable side effects for some, seems a perfect case study of the conveyor belt at its worst.

But I hesitate to say that. After all, the immunological strategy for a cancer cure is still new and experimental, a classic case of making a research bet. The  federal government’s  Cancer Moonshot signals that bet, great risks and potentially great rewards. Another initiative, Cancer Breakthroughs 2020, suggests an intensified effort. These developments leave me with a dilemma. The research can not proceed in any meaningful way if those dying of cancer overwhelmingly choose palliative care only, deciding not to run the risks of the experimental treatments. The only way to get them to run the risks is to get them on that conveyor belt that is otherwise causing us so much trouble.

My uneasy solution is that of total transparency. Those recruited for clinical trials of the treatments should be warned up front about the low probability of success and the possibility of unpleasant side effects. If death from cancer is inevitable without immunotherapy, patients may decide that they have an unusually strong set of reasons to continue living: unfulfilled life goals, family responsibilities, or simply a desire to help gain knowledge that will help others. A 15% success rate is better than nothing. Simultaneous palliative care can ease patients’ final days. Because of their choice, and the research it made possible, many may live in the future because others were unwilling to die now.

Daniel Callahan is President Emeritus and cofounder of The Hastings Center.

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  1. Best Regards! I have heard this hard choice reduced to one simple, but unfortunately no less painful, sentence with two parts Mr. Callahan. The truth becomes apparent very very quickly; Are we prolonging death or are we prolonging an acceptable quality of life.

  2. Thank you for your insightful essay. I agree with your conclusion; care teams must disclose low probabilities of success for clinical trial treatments, especially to patients approaching end-of-life decisions. While many patients and caregivers view clinical trials as a ‘miracle cancer cure,’ research is at its core experimental. Care teams must not misattribute the clinical study as an alternative treatment. While some patients benefit from investigational therapy, cancer research aims to study the effects of an unapproved treatment and learn information that can help future patients. Cancer trials should be reframed not as a last resort but instead as an opportunity to receive an investigational drug that will if nothing else, help future patients. Failure to disclose this distinction feeds into therapeutic misconception, which can be harmful to patients. Research teams should clearly emphasize to the patient the ability to stop treatment and receive palliative care at any stage of their participation. The notion of combining palliative care and cancer research is also crucial; care teams should offer this approach to patients where appropriate. A dual approach may help patients make decisions within their values while receiving access to novel, experimental therapy.

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