Dr. Angelo Volandes remembers performing rib-cracking CPR on a frail elderly man dying of lung cancer, a vivid example of an end-of-life dilemma: Because his patient never said if he wanted aggressive care as his body shut down, the hospital had to try. He died days later.
Years later, the Harvard Medical School researcher now tries to spur conversations about what care patients want during life’s final chapter through videos that illustrate different options.
“This is about patient empowerment,” said Volandes, who describes his program in a new book aptly titled “The Conversation.”
Most Americans say they’d prefer to die at home, with treatment to free them from pain, but the prestigious Institute of Medicine says the reality too often is unwanted care and not enough comfort. One main reason: Doctors have a hard time discussing dying and patients don’t know what to ask. Now the institute is recommending changes in the health system to help patients — not doctors or circumstances — dictate their care, and it all starts with some straight talk.
“These conversations should be part of a life cycle, not just at the end of life,” said Dr. Philip Pizzo of Stanford University, who co-chaired the institute’s panel that is holding meetings on how to implement the recommendations. “Regardless of whether an individual is choosing more or less, both ends of that spectrum are important and we should honor preferences.”
Already some programs are underway to jump-start the discussions. VitalTalk trains doctors for emotional conversations such as whether it’s time to stop cancer chemotherapy, and how to ask what patients value most for their remaining time.
“Doctors know what they should do, they just don’t know how to do it effectively,” said VitalTalk co-developer Dr. Anthony Back, a University of Washington oncologist.
And health facilities can license Volandes’ videos to show families what options ranging from CPR to feeding tubes to hospice involve, before they talk with the doctor.
In carefully controlled studies, Volandes found patients were less likely to opt for aggressive end-of-life care after seeing the videos than if someone just described their choices.
About 200 hospitals and other health facilities around the country use the videos.
“If one of our members makes a conscious decision that, ‘I want to fight until my last dying breath,’ we’re supportive of that,” said Hilton Raethel, chief health officer of HMSA, the not-for-profit Hawaii Medical Service Association. “But we want that to be a choice you make as opposed to, it’s something that’s imposed on you.”