The Rules of Dying

ClinTrial-HospiceA recent article in the New York Times “Wellness Blog”* grabbed my attention. Titled “Dying Shouldn’t Be So Brutal,” it began with the story of the author’s friend who was in the late stages of an incurable cancer and who was undergoing Phase 1 clinical trials for an experimental cancer drug.

Phase 1 trials are highly problematic in terms of how effective they are. They are first time a new pharmaceutical or therapy is tried out on humans in order to determine if its effects on humans correlate to previous animal studies.

People already suffering from the intense pain and debilitating effects of advanced cancer usually enroll in a Phase 1 trial as a last gasp, long odds hope. If it works great, but given its highly experimental nature, it too often cannot halt the cancer’s progress. Which is what was happening to the author’s friend.

When the author suggested to his friend that he would benefit from hospice, which provides palliative care and long-acting pain relievers, he discovered that his friend had been forced to choose between the Phase 1 trial—his last hope—and hospice. Medicare rules do not allow a patient to be in a clinical trial and be on hospice at the same time.

The underlying logic is that hospice is intended for patients who are no longer being treated. But Phase 1 trials can barely be called “treatment.” The more accurate term is “human guinea pig.”  The trial is fundamentally an experiment more likely to ultimately benefit others—not the patient himself. The question is, why should someone near death and willing to undergo a risky experiment with slim odds of personal benefit be denied the modicum of comfort that hospice provides?

As for me, I know that should my cancer returns and then progress to the end game if conventional treatments fail, I am likely to choose hospice as the best way to live out my final days. But based on my five years of experience as a consumer reviewer for the Prostate Cancer Research Program, I also know there are exciting new therapies in the early stages of development. I may very well want to participate in a trial that has an outside chance of prolonging my life. And, to be blunt, even if the trial didn’t work for me, I’d at least have the altruistic satisfaction of knowing that perhaps my participation in that trial would help some other guy in the future.

But would I choose the trial if I knew I would be denied the palliative care of hospice, opting instead for a high probability of dying in cancer-induced pain? Probably not.

“Assisted dying”—the preferred marketing term for “assisted suicide”—is all the rage these days, but an act that for me personally is ethically and morally unacceptable. Why can’t we be as enthusiastic about hospice as “assisted living” and offer it in tandem with clinical trials–especially Phase 1 trials?

My point is quite simple: Why should those of us who believe that living our last days in dignity and comfort be confronted with such a stark binary choice: (1) hanging on to a last hope at the probable cost of dying in agony, or (2) choosing a peaceful conclusion to our natural life but at the cost of of forgoing that last best chance?

What bureaucratic purpose is served by a two-alternative forced choice policy when palliative care offered together with hanging on to that last best chance of a phase 1 trial seems so merciful—and obvious?

This either/or logic is just one more proof (to me, anyway) that we Americans—and our medical establishment—remain in denial about facing the reality of death and developing informed and humane policies for the vast majority of us who wish to live and let nature take its unassisted course to our inevitable end.

The media are eagerly following those who favor hemlock. But will they listen to those of us speaking for hospice?



  1. says

    Craig, with this you hit the nut of the issue:

    “This either/or logic is just one more proof (to me, anyway) that we Americans—and our medical establishment—remain in denial about facing the reality of death …”

    I regularly come across this attitude; it is even in our language, the words we use to replace die, death, died, dead, or dying.

    Having said that, I don;t believe it is just an American phenomenon. I believe that the ancients were as equally stymied by the prospect of death, which is what mythology addressed.

    • Craig Pynn says

      You are absolutely correct, Thomas. Our inability to deal with our mortality stretches back to when we were painting cave walls. So, I guess we could say it’s hard-wired into us. Nevertheless, I’m a creature of American culture, so I guess I’m stuck in that context.

  2. Andy Gurcak says

    Excellent post as always. I saw the NYT article and clearly there is a lot of thought being brought to how people approach their death. Probably not surprisingly, I would do the same as you: given the opportunity, I would choose hospice. It’s a tough call though on whether to submit to drug/treatment trials, especially early ones. No easy answer.

    But I did see this article in The New Yorker by Michael Pollan of Ominivore’s Dilemma fame. It’s yet another take on how one might choose to deal with death as it approaches:

    It is a sort of LOL, however grimly, as we Boomers start approaching our final days in VERY large numbers. A whole lot of people are going to be looking at our issues, for any number of reasons

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