What your doctors know about the end of life that you don’t

There’s a big gap between what doctors want for themselves and the reality of medicine. The disconnect can be hard to make sense of. CPR—it’s life-saving right? Antibiotics—how could they be bad?

Yet when asked in surveys and articles, doctors mostly agree: they do not want to die how many people in hospitals die. In one research study, a group of Johns Hopkins-trained doctors had to choose what medical interventions they’d want in the case of irreversible brain injury. (This scenario was considered harder than something like terminal illness.) Almost 90 percent said that they would not want CPR or mechanical ventilation. Most also did not want antibiotics, chemotherapy, or a feeding tube–interventions that are often considered the default in today’s system.

The majority of doctors want only pain medication at the end of life.

The opinion doesn’t seem age-dependent either. Younger doctors at Stanford, mostly age 40 or less, were asked what they would want if they had a terminal illness. Again, almost 90% did not want their life prolonged with interventions like CPR if they were unlikely to be helpful.

Granted, these are all hypothetical scenarios. Yet the sentiment is clear, and carrying out these wishes is often much harder than it should be. The default is always to prolong life, even when doctors might recognize that the benefits are few. Although more people are dying at home, many still spend their last days connected to tubes and lines with limited ability to communicate with loved ones. Americans actually spent more days in the ICU in 2010 at the end of life than the decade before.

Zeke Emmanuel, a prominent bioethicist and health reform leader, wrote about these defaults in a piece in The Atlantic, “Why I hope to Die at Age 75”:

Today, when the doctor recommends a test or treatment, especially one that will extend our lives, it becomes incumbent upon us to give a good reason why we don’t want it. The momentum of medicine and family means we will almost invariably get it.”

His own wishes are quite different:

At 75 and beyond, I will need a good reason to even visit the doctor and take any medical test or treatment, no matter how routine and painless. And that good reason is not “It will prolong your life.” I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative—not curative—treatments if I am suffering pain or other disability.”

Refusing interventions at the end of life requires tough conversations and lots of paperwork, like advance directives, healthcare proxy forms, and Do-Not-Resuscitate orders. Even for doctors who know how the system works, many have not talked about this with their own doctor or documented their wishes formally.

We at CAKE think this process doesn’t have to be so hard.

All this gives new meaning to the question, “Doc, what would you do if you were in my shoes?”

The answer may or may not surprise you, but it could just be the beginning of a life-changing conversation.

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For more on this topic, check out:
– Radiolab’s excellent podcast Bitter End (which talks about the Hopkins doctors)
– the Hopkins study: “Life-Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?”
the Stanford study: “Do Unto Others: Doctors’ Personal End-of-Life Resuscitation Preferences and Their Attitudes toward Advance Directives”

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