In November Dr. Ken Murray published a blog on Zocalo Public Square called “How Doctors Die.” It’s been reverberating through the Web ever since, prompting a continuous stream of comments and inspiring others to offer their own essays and input.
What struck a chord was the assertion that doctors with terminal illness often reject the long-shot technology that traps other people in cycles of hospitalizations, surgeries, procedures and chemicals, and ensures their final days will be in intensive-care lockdown. Do the same doctors who personally reject such misery recommend miserable, intrusive, painful, toxic and inhumane treatments for their patients? We can’t be sure. Dr. Murray provides no scientific studies. But he does speak of doctors who took a pass on miraculous cancer treatments, such as might “triple” the five-year survival rate. Even tripled, patients who opt for the treatment gain only a 15% chance of reaching that milestone, at great sacrifice in quality of life.
All this makes sense. Doctors are scientists, after all. They know the physical burden of intense treatments, and they know the odds are long against curing, or even lengthening life with cancers like lung, liver and pancreas. They know little has changed in cancer cure rates over the last 40 years, with the exception of childhood leukemia. And they know cancer therapy can make a person very sick and even cause the patient’s death. Bone marrow transplants, for example, have a 25% – 30% mortality rate from the treatment itself.
Dr. Murray also offered stories of regular patients, nonphysicians, who answered the siren call of medical technology only to die in misery, probably no later than they otherwise would have. This is the typical pattern of end-of-life care in America.
It reminds me of the stunning Frontline documentary about a New York stem cell transplant unit that aired in November 2010. The show included disturbing footage of specialists in this cutting-edge field, not so much cajoling their patients to accept extraordinary medical assault as communicating in behavior and attitude that there really is no other choice. To my astonishment and horror, two doctors asserted that dying patients owe it to society to suffer the agony of treatment and die under intensive care because “that is often what drives medicine forward and leads to discovery.”
The thought that these very doctors would play the odds, decline futile or invasive long-shot therapy, relax into palliative care and die at home seems an affront. Many of the comments to Dr. Murray’s blog come from the healthcare tribe — doctors, nurses, biomedical researchers — people who believe they too would refuse the treatments they regularly deliver to their patients. More than a few say their growing reluctance to inflict unnecessary suffering was the reason they left intensive care or hospital medicine.
When it comes to aid in dying (providing life-ending medication upon the request of a terminally ill, mentally competent adult) evidence suggests most doctors do want that choice for themselves. A 1997 survey of oncologists found about half could imagine a situation in which they would want assisted dying for themselves. Yet almost 7% of those could not imagine a situation in which assisted dying would be acceptable for their patients. In 2001 Dr. Linda Ganzini surveyed Oregon doctors about the state’s Death with Dignity law. She found 51% of Oregon doctors supported the new law and 53% would consider aid in dying for themselves if they were terminally ill.
I’ve always referred to that 7% and 2% as the “reverse golden rule” doctors. Withhold from others what you would desire for yourself.
But maybe that’s not as offensive as doctors who promote tough treatments to their patients that they would never accept for themselves. I’d call that the “perverse golden rule.” Urge others to endure horrific treatments you would reject for yourself.
I fully understand how complex and heart-wrenching treatment decisions can be. In differing circumstances I’ve both pleaded for and against heroic therapies for a person I loved. Yet I believe the time will come, and in the not-too-distant future, that most people see “do everything” medicine for what it is: Hardly the privilege of an elite population in a rich nation, it is rather a perverse imperative of science and technology unchecked by compassion or common sense. The truly privileged elite see this, and more often choose to die quietly in their own beds when the end of life inevitably approaches.