Physician leaders should know what the term entails — and what it doesn’t — to discuss it with patients and staff.
As she neared death, former first lady Barbara Bush’s announcement that she was seeking “comfort care” shined a light — and stirred debate — on what it means to stop trying to fight terminal illness.
Bush, the wife of former President George H.W. Bush, died April 17, 2018, two days after it was announced she had decided to "focus on comfort care" and “not to seek additional medical treatment" for congestive heart failure and chronic obstructive pulmonary disease. She was 92.
That announcement from a Bush family spokesman came amid a national effort to define and document patients’ wishes, and consider alternatives, before they are placed on what has been described as a “conveyor belt” of costly medical interventions aimed at prolonging life.
Ellen Goodman, co-founder of the Conversation Project, which encourages families to discuss and document their end-of-life preferences, applauded the former first lady's decision. “It sounds like this forthright, outspoken woman has made her wishes known and the family is standing by her,” Goodman says.
“It makes perfectly good sense at her age, with her failing health, that she would say at some point, ‘Life’s been good, and while you always want more, it’s enough,’” says Joanne Lynn, MD, director of the program to improve elder care at Altarum Institute.
Lynn worked with Barbara Bush years ago, when she was a congressional spouse volunteering at the Washington Home for chronically ill patients. Bush helped with the founding of the hospice program there.
“We have so few examples in visible leadership positions” of public figures promoting palliative care, she says.
“It’s a personal decision that she didn’t have to share, but hopefully it will encourage others to think about their choices, talk about their choices, document their choices and have those choices honored,” says Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, which, since 2008, is marked on April 16.
Haider Warraich, MD, a fellow in cardiovascular medicine at Duke University Medical Center and author of the book Modern Death, also noted that the family used the phrase “comfort care” into the public sphere so that other people can consider it “a viable option at the end of life.”
But he says the family statement also created confusion about the meaning of “comfort care,” by suggesting that it entails stopping medical treatment. On Twitter, palliative care experts vigorously refuted that mischaracterization.
“Comfort care” usually refers to palliative care, which focuses on managing patients’ symptoms to keep them comfortable and retain their dignity, Warraich says.
“One of the common myths about palliative care is that they are being denied medical help,” Warraich says.
For heart failure patients, he says, “comfort care” usually means opting not to use a breathing machine or CPR. But patients do continue to receive medical treatment, including morphine to ease shortness of breath, and diuretics to remove excess fluid from their lungs, he said.
Heart failure patients, he said, often receive “escalating medical treatments until days before the end of life.” Their transition to comfort care can be abrupt, “like falling off a cliff,” he said.
“By bringing this into the sphere of discussion,” Warraich said, “we can start thinking about comfort and palliation long before they are in the clutches of death.”
This story originally was published on April 16, 2018, by Kaiser Health News.