The Ethics of End of Life Care and, Not So End of Life Care / by Muhammad Amir Ayub

Another good article on the ethical dilemmas brought about by medical miracles that keeps you alive on the outside but dying inside: 

Employed by the hospital, Bramstedt functioned somewhat like an informal judge, setting out and applying the rules when families, patients, and medical staff were at odds. She was the arbiter when a family like mine found itself unexpectedly powerless in the face of advanced medicine.

Most of her consults involved much more extreme power struggles than ours between doctors and families over how to treat—or stop treating—desperately ill patients in intensive care, ravaged by deadly infections and kept alive with drugs, feeding tubes, respirators, and dialysis. She had her work cut out for her. In the ICU, there was no such thing as natural death, and few were comfortable with the timed event that had taken its place. Half the time, doctors wanted to keep going when families wanted to let go, and half the time, families—especially, but not only, African-American families—wanted to keep going when doctors wanted to quit. Sometimes doctors ignored advance directives from patients and even ripped them out of the charts. Sometimes a family would balk at implanting a feeding tube in a demented relative, only to hear a doctor say something like, “Nobody starves to death on my watch.” Sometimes doctors complied when a long-estranged son or daughter—commonly referred to in hospitals as “The Nephew from Peoria”—flew in at the last minute and insisted that everything be done, even things that doctors and other family members thought were torturous, wasteful, and hopeless. When fragmented families collided with a fragmented medical system, the results could be disastrous.

In a highly litigious country like the US (the world is catching up, even us), the threat of getting sued governs too much what should be “correct medical care”. And multiple parties fight on the extreme side or just turn a blind eye (both are bad) on the debate between allowing a dignified versus fighting for a miserable, non-beneficial life:

In a handful of extreme cases scattered across the country, distraught husbands and fathers had entered ICUs with guns and disconnected half-dead children from respirators or shot comatose wives in the head. On the other hand, if too much morphine was given, or too little done to try to save a life, a nephew from Peoria might sue for negligence, or a local district attorney might even consider charges of manslaughter. A single unnecessarily prolonged intensive care death could cost a hospital well over $300,000—money not recovered from Medicare, which usually paid a lump sum based on the patient’s diagnosis, no matter what the hospital’s costs. The families, meanwhile, were often in shock: staggering to absorb reams of data from rotating casts of stranger-specialists who each zeroed in on a single organ and did not seem to talk to one another; fearful of death; ignorant of the limits of medicine; guilt stricken and religiously conflicted about ending life support; agonized by relatives’ suffering; and hoping against hope.

We must do more to communicate together and understand our limits. I don’t think we do too poorly as we are definitely not very advanced (though reasonably comprehensive in coverage) and understand better our (limited) medicine’s limitations (pun intended).

It was Bramstedt’s job, in a secular, religiously diverse culture with no consensus on these issues, or even a common language, to thread the needle among conflicting sets of values: the patient’s legal right to medical autonomy; the state’s interest in preserving life; the religious values of the family; the hospital’s interest in avoiding a lawsuit; and the doctor’s Hippocratic obligations to act out of “beneficence”—usually defined as doing more, not less—and not to assist in suicide or mercy killing. It was she who reassured families and doctors that it was morally and legally okay to deploy treatments that gave comfort while withholding treatments that prolonged the agony of death.

The idea that avoiding litigation (a trend in the article) should guide life or death decisions is one of the greatest sins of lawyers (milking the Apple versus Samsung saga, not so much). 

And managing these “directions of care” issues doesn’t pay: 

In any case, Dr. Rogan said, “Everyone takes for granted that it’s the family care physician who really acts as a quarterback.” And where was my parents internist, Dr. Fales? Why did Medicare reward the surgeon and the cardiologist far better for doing the procedure than it would have Dr. Fales for making a reasoned argument against it? “I spend 45 minutes thinking through the problem, and I get 75 to 100 bucks,” Dr. Fales said when next we spoke. “Someone spends 45 minutes putting in a pacemaker and is paid six times as much.”

Read the whole article for the author’s experience with a family member with an implantable electronic cardovascular device.