Hope and Death

Here are twin news items that strike a powerful chord. First up is a report looking at whether or not doctors are willing to tell patients that, in essence, the game is up. A study shows that only one third of terminally-ill cancer patients say they have a doctor who has discussed end-of-life care. There are lots of slang phrases in medicine for this end-of-life type of discussion: The Death Talk. The DNR discussion. The Big One. Hanging The Black Crepe.

But what I, personally, find offensive in this report… is the fact that “the California Assembly just passed a bill to require that health care providers give complete answers to dying patients who ask about their options. The bill now goes to the state Senate.” Clearly, this bill is being voted on by people who’ve never given or received the Death Talk. The biggest tip-off to this fact is the wording of the bill, to “give complete answers.” How enforceable is that? Is anyone suggesting that doctors are actually lying to patients about…life? Or death? Or hope? I personally, as a physician, believe in being more, rather than less, forthright with patients. Read my How To Break Bad News post for more on this topic.

Like many (if not most) doctors, I’ve been there – sitting and weeping and holding hands with people I care for. I became known during one of my transplant surgery rotations in residency as “the Grim Reaper” because I was the only one able to withdraw care for the patients and families who requested it when all else had become futile. I was the one resident that month who could do (for whatever reason) the emotionally hard work of loss, up to and through the act of dying. It got so extreme that if someone wanted care withdrawn in the ICU, the team made them wait to do it until I was next on-call.

During my pregnancies, I was on the receiving end of two different end-of-life, DNR discussions when it looked as though I was going to deliver long before my lovely daughters (now 13 and 16) were viable. Did I want them resuscitated if they were born? What should we do? I speak with some experience when I say that end-of-life discussions are an amazingly complex issue, and one fraught with serious implications – not the least of which is the question of who’s driving this legislation. Anyone who’s been involved knows that you, as the provider, frame the end-of-life discussion, and patients and families, understandably, are often very emotionally fragile. This, almost more than in any other part of medicine, speaks directly to issues of trust, and care in its purest sense. A lot of justification in the news for being outraged at the lack of these death discussions is that a lot of money is “wasted” at the end of life. First, let’s define “waste” and “whose money” and “relative to what” and then I’m happy to start defining “complete answers.”

Second, in related news, the President of the AMA, recently diagnosed with one of the most hopeless forms of cancer, gave a very public, heart-breaking plea to fellow physicians to “never take away someone’s hope.”

“As a physician, I know the survival statistics for someone with stage 4 pancreatic cancer,” Davis said. “But if the five-year survival is five percent, that is not zero.”

So where do these twin news reports leave us, in terms how to look at this complex topic? Well, here’s a relatively old, but very decent article from the New York Times, titled Frank Talk on Dying: Examining the Choices. And if you live in California, I urge you to email your legislators and let them know your opinions. Laws are a crude billy club for tackling such a sensitive, private area.

Addendum: The International Herald Tribune’s Jane Brody wrote an excellent piece on living with advanced cancer – the chronic disease approach. One of the doctors interviewed, Fisch, “calls the new therapy for advanced cancer ‘the hitchhiker model.’

Time is bought by going from point A, the first-line therapy, to point B, the second-line therapy, to point C, the third line of therapy, and so on. The approach can continue indefinitely, as long as new therapies become available and patients remain well enough to withstand the rigors of treatment.

But Fisch noted that adding meaningful years to the lives of patients with advanced cancer depends in part on avoiding the attitude, prevalent among some physicians, that cancer is hopeless after it has metastasized.” [emphasis mine]

While false hope is a dangerous weapon to wave indiscriminately, the chronic disease approach to advanced cancer clearly throws a monkey-wrench into the whole legislating end-of-life discussions issue.

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