Last week I had the privilege of hearing a talk by Angelo Volandes, MD, author of The Conversation. Dr. Volandes is leading an important national effort to enable and empower individuals to make choices about their own end of life issues. A physician at Massachusetts General Hospital, Dr. Volandes has done a tremendous amount of research not only on the choices people make but on the way in which they reach their conclusions. Dr. Volandes realized that many of those faced with terminal diagnoses would choose options like “do everything possible” without really knowing what that meant or what it entailed.
A passionate advocate for providing choices, Dr. Volandes says that this is far more than an issue of providing care that is unnecessary or futile, that is an issue of providing care that is unwanted. He believes, and his research affirms, that if people are educated about their options, their choices are different. Just because we have a technology or a treatment does not mean that we must use it. Rather we must allow patients to have self-determination and give them the foundation of information to make fully informed choices.
What brought Dr. Volandes to this work? Early in his career, he had the experience of caring for a man with an end stage illness who could neither express his wishes nor had family to express them for him. His last days became a whirlwind of extreme measures, many of which may have caused pain, all of which were unnecessary. Deeply affected by this experience, Dr. Volandes began to look for, and develop, a better approach.
He began by showing patients with terminal diagnoses what areas like the ICU looked like, what a ventilator was and how it was used, what their care might look like and be like, giving them a frame of reference for their decisions. While this approach had some benefits, he realized that this was not optimal or even feasible for all patients. Instead, he began to explore using videos to help people make informed choices. These videos are done in clear language, paced to aid understanding and kept short and as simple as possible. When a patient has a diagnosis that might warrant certain decisions, they are, as a matter of course, shown the appropriate video to help them learn about the choices that face them.
The results have been powerful with people choosing with much more knowledge and preparation. Their choices, not surprisingly, have tended to move from “do everything” to “do everything up to” and even to “do what is necessary to keep me pain free.” There is no pressure to choose one option over another, just a chance to learn and make choices from a place of understanding rather than assumption or even ignorance.
Many of us, perhaps most of us, who work in healthcare have had experiences akin to the one that started Dr. Volandes on his journey. We work hard to help individuals, and families, make choices that are right and respectful for the individual. Yet there is far more to do. To embrace this kind of approach, despite the fact that it may seem simple and obvious, is complex. It represents a major shift for healthcare providers, taking a step back from always and automatically approaching situations with a “curative” mindset and taking a step back from the belief that “we know best” for the patient. The learning has to occur with all of us who are care providers as well as with patients and it is founded on one principle we must understand, embrace and take to heart—that individuals have the ability to make their own choices, that we must remember that, respect it and ask the question. We must have the conversations with one another, with those we care for and their families and even within our own families. In doing that we will truly bring reality to the words Dr. Volandes used, that “a life well lived deserves a good ending.”