Healthcare News & Insights

End-of-life care: What patients expect isn’t what they get

Few patients talk to their doctors about end-of-life care options — but they want to. That’s just one of many disparities in how patients want to handle their care. That’s the takeaway of a new survey of patient attitudes toward end-of-life care. The survey, released by the California HealthCare Foundation, polled nearly 1,700 patients in California, about one-fourth of whom had lost a family member in the past year.

The results show that on a number of issues, what patients want — and what the typical person’s end-of-life care actually is — are at odds with each other. Among the findings:

  • Respondents said the most important parts of their end-of-their life care was making sure they weren’t a financial burden to their family (67% of patients) and that they were comfortable and not in pain (66%).
  • 60% said that making sure their family didn’t get stuck making tough decisions about their care was “extremely important” — but only 44% had shared their end-of-life wishes with the person they designated to make decisions for them.
  • 82% said it’s important to have their end-of-life wishes in writing, but only 23% have done so.
  • Nearly 80% expressed interest in discussing end-of-life care issues with a doctor, but only 7% had done so.
  • More than 80% think doctors should be paid for having end-of-life care discussions with their patients.
  • 70% said they would prefer to die at home. In reality, the most recent statistics show 42% of Californians died in a hospital, and 18% in a nursing home. Only 32% of deaths occurred at home.

The survey reveals a combination of unrealistic expectations about end-of-life care and an unwillingness to discuss difficult issues until they’re unavoidable.

What is crystal clear is that doctors and other health care providers need to take a more proactive role in not only bringing these issues up with their patients (and their patients’ families), but doing so well before actual decisions have to be made. Health care pros should also be prepared to facilitate what is often a difficult discussion for families to have.

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