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How the health care system fails dying patients

Illustration of a stethoscope with a knot in it.
Illustration: Sarah Grillo/Axios

Medical culture has often framed death as a binary decision: preserve a patient's life at all costs, or give up and accept what happens. That framing does a disservice to the fear, uncertainty and philosophical questions about life and death that patients and their families experience.

The big picture: American health care, from medical education all the way through to the payment system, generally does not encourage doctors to listen to dying patients' needs or priorities.

Why it matters: The health care system isn't helping patients wrestle with these difficult questions, while advances in medicine are making them even harder to answer.

  • Today's technology can make it difficult to define what "dying" is, according to doctor and author Atul Gawande.
  • "At some point for each of our patients, we're not going to have a way to fix a problem," said Sunita Puri, a palliative care doctor and author. "We shouldn't set our patients up with false hope that medicine can solve anything."

"I would like to believe that I will be very clear-eyed and rational, that I will know when it's time to stop treatment," Diane Meier, a leading expert on palliative care, said when asked how she would like to die. "But I am not so arrogant as to think that I might not choose [more treatment] out of fear."

Where it stands: Experts say we have designed a system that fails to support both the chronically ill who are the costliest to treat and those who are closer to death.

  • Medical schools often cast aside courses on geriatrics and palliative care as "optional," and many schools "graduate young physicians who have never been adequately trained to listen to people," said Ira Byock, a physician and author.
  • Medicare's hospice benefit is restrictive. And despite some recent changes in policy, physicians don't have a strong financial incentive to spend time listening to patients' concerns.

There's some cause for hope. The hospice and palliative care movement has expanded rapidly: 75% of all hospitals with at least 50 beds now have some kind of palliative care program.

  • Plus, more people are dying at home, where they'd rather be, instead of in a hospital.

The bottom line: "Is death a friend or an enemy, to be acquiesced to or to be fought? American medicine is simply not sure about the answer to that question," bioethicist Daniel Callahan wrote in 1995.

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