What do patients in end-of-life care want to talk about? A recent study asked them about the most important issues. The top five are:
Preferences for care in the event of life-threatening illness
Patient values
Prognosis of illness
Fears or concerns
Additional questions regarding care
Researchers at McMaster School of Medicine in Canada found that doctors don’t do a very good job of bringing up these issues with their end-of-life patients.
“Talking about end of life care is really important to patients and families. And yet we also know that doctors and others aren’t engaging their patients as often as they should,” said John You, who led the study.
As the country ages, the number of Americans in hospice careis growing, from 1.3 million in 2009 to 1.5 million in 2014. That’s nearly a 15 percent increase in five years.
Patients said the more the healthcare team discussed issues with them, the more satisfied they were with their care. Doctors, though, are tempted to do all the talking.
That’s because they’re focused on getting a decision or aren’t comfortable discussing the issues, You said. Many doctors feel inadequately trained to talk about the end of life.
“They recognize that patients and their families are concerned or in denial. It might be easier to say I’ll talk about this tomorrow; not right now,” You said.
Most of the guidelines given to health care teams were developed based on expert opinion, not patient feedback, You said. The message, when asked, is that patients want their doctors to stand back.
“That says to me for doctors — talk less and listen more,” You said.
For the study, physicians surveyed 233 hospitalized patients and their families. The patients were mostly of advanced age with a serious illness. The patients were admitted to nine hospitals throughout Canada.
You said that while some of five issues to talk about may sound like common sense, labeling them will help with further training, such as conversational guides.
Gavin Stern is a national digital producer for the Scripps National Desk. Follow him on twitter at @GavinStern or email him at gavin.stern@scripps.com.
