Health Care And Civic Leaders Launch Serious Illness Care Coalition

A group of health care and civic leaders meets at the Kennedy Library Thursday morning with a mission: ensuring that Massachusetts residents live their final weeks or months as they choose. They’re launching a new statewide effort called the Serious Illness Care coalition.

The aim of the group is to encourage patients, doctors and family members to talk about what type of care they want when facing a serious illness — the kind that could lead to death within a year.

One of the co-chairs of this coalition, Dr. Atul Gawande, joined WBUR's Morning Edition. He says having these conversations is an important part of improving quality, as well as quantity, of life.

Why is it important to have conversations about end of life care? 

"When you come in and you are sick or in a crisis, we think this discussion is about: Do we want to fight, or do we not want to fight? Are we going to do everything possible, or are we going to give up? That's not actually the question. The question here is: What is it that we're fighting for? What are we going to make sure is the minimum quality of life you'd find acceptable? What is it to have your best possible days and how do we make sure we do not sacrifice what is most important to you and what is not."

You're releasing a survey that shows about 25 percent of residents who had a serious illness reported talking to their doctor about end of life care. What seems to happen many times is that there is a gradual decline in health and there are measures put in place and it takes on a life of its own. How would this coalition address that?

"The finding that 85 percent of our population, of our resident state, believe that clinicians should talk with them about their quality of life and end of life goals and yet at the same time, only 25 percent when they become seriously ill have those conversations — that leads to suffering. But what we see is that when people articulate those goals and wishes, and the treatment matches it, then people are able to have better quality of life, and as a consequence, that doesn't mean sacrificing quantity of life along the way."

Why do you think we're not doing this very much right now? Is death just too uncomfortable for many people to talk about it?

"There is tremendous anxiety on all sides about setting goals and wishes for what happens if the worst happens along the way. And it's not just necessarily, at the end of life. One of my colleagues, talking to her father and having this conversation, he said 'If I can eat chocolate ice cream and watch football on television that will be good enough for me, but if I can't let me go.' And it was the best living will ever."

What do you do differently, as a surgeon, with your patients, since you began focusing on this issue?

"You know you come through, I'm a surgeon, and I take care of a lot of cancer patients and when I have a solution that is going to cure your disease, I know exactly what to do. But I didn't know what to do when I might have a patient where you have uncertainty. What I do differently now in my clinic is ask them: What are your goals and wishes? What are your fears and worries for the future? What's the minimum quality of life that you would find acceptable? What would you be willing to go through for the sake of more time? And then I could understand from that what are your most important priorities besides just living longer, and then I can make a recommendation of a treatment that matches those. For example, my wife and I have very different views. I am of the view that as long as my brain is working, that is what matters to me. I want to be able to communicate and connect with people, so keep me going as long as my brain is working. My wife says, 'I'm God's creature, if my brain isn't working, you know me. I don't need to know who you are, I don't need to communicate with you, but if I look happy, keep me going and if I don't look happy, let me go.' "