Bob Samuels, a 76-year-old leadership consultant in Lake Oswego, Ore., has undergone six different kinds of chemotherapy to combat the leukemia he's been fighting since 2003. After one of those rounds caused life-threatening congestive heart failure, his primary care physician sat down to talk with him about his wishes for care near the end of life. "No other doctor had ever brought this up, but the conversation gave me comfort that dying doesn't have to be painful — and more importantly, the likelihood of my end-of-life wishes actually being followed is now quite high," Samuels says.
Now more people will be able to have these conversations. As of Jan. 1, Medicare has begun reimbursing physicians and other health care professionals for talking with patients about future medical decisions and their priorities for care at the end of life.
"The fact that the largest health insurer in the country is paying [doctors] to do this sends the signal that such conversations are important," says Diane E. Meier, M.D., director of the Center to Advance Palliative Care at Mount Sinai Health Systems in New York and a member of the national panel that made the recommendation for Medicare reimbursement.
Although this has been a controversial subject in the past, these talks can help ensure that patients' wishes are followed if they become critically ill, says Ira Byock, a palliative care physician and author of The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life. It also can help surviving friends and family. "It's better," he says, "to work this through when people are still alive so that others can look back and feel like they did it right."
If your doctor doesn't initiate an end-of-life talk with you, here are some ways to get one started and some of the topics you should cover. In addition, there are important legal documents that you will need to make your decisions binding.
Having the talk
Harvard Medical School professor and researcher Angelo Volandes, author of a book on these talks called The Conversation: A Revolutionary Plan for End-of-Life Care, encourages patients to initiate end-of-life conversations with their doctors. "Physicians are often hesitant to bring up the subject and are often relieved when patients do it first," he says.
The Conversation Project, a website begun by Pulitzer Prize-winning writer Ellen Goodman, has an excellent, free online starter kit with suggestions for ways to break the ice with your doctor and what topics to discuss. Calling ahead to say you want an appointment with your doctor to discuss your end-of-life care is the first step.
Volandes, an internal medicine physician, says patients and their doctors should discuss questions such as: What is most important to you? What fears do you have about getting sick or needing medical care? If you were very sick, are there any specific medical treatments that might be too much for you? Do you have any beliefs that guide you when you make medical decisions?