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A growing national movement to normalize end-of-life discussions among family and friends has gained traction in recent months. As Medicare considers whether to cover such conversations with physicians, The Conversation Project, a Boston-based non-profit, is highlighting the importance of talking openly about dying. Special Correspondent Lynn Sherr reports.
"What's the matter, Mama?"
"I'm dying, Forrest."
It's been a Hollywood staple for decades: the deathbed scene – here, Forrest Gump's Mom (Sally Field) reminding her son (played by Tom Hanks), that death is a natural part of life. But when end-of-life conversations with doctors were encouraged by the government back in 2009 during the Obamacare debate, opponents called them "death panels" and the idea became toxic. Some called it "pulling the plug on grandma." That was then.
It is exactly the opposite. It is about grandma controlling the plug. Grandma or her designee controls the plug and that's the system we're going to have.
Dr. Lachlan Forrow, a specialist in ethics and palliative care at Boston's Beth Israel Deaconess Medical Center, is at the forefront of a new national movement to make talking about death public policy. He chaired the expert medical panel that helped lead to new Massachusetts regulations — the first in the nation, which took effect in December – mandating that health facilities – from hospitals to assisted living communities – tell terminally ill patients their end-of-life options.
The full range of the choices. From "Keep me alive, no matter what, as long as medicine can do that," to "I just want to be home with my family, with hospice," to anything in between or any sequence.
Nationally, a number of private insurers are already reimbursing doctors for having those talks. Among the critical first steps: an advance directive and a health care proxy so someone you trust can legally make decisions if you're incapacitated.
And almost six years after the Obamacare proposal perished in the political graveyard, Medicare is now reviewing the possibility of paying for such discussions, which have been endorsed by the American Medical Association. A decision could come by the end of this year.
We are just starting to emerge, so that politicians and others realize this is not the third rail of politics. You are not destroying your career by talking about improving care in the last phase of life.
But advocates say policy doesn't change until the culture does, and inserting such private conversations into the public arena may require a new approach.
Sometimes people think you talk about dying and you let it into the room, you know, that if I talk about this today, it'll happen tomorrow.
Pulitzer-prize winning journalist Ellen Goodman is on a mission to make death part of popular conversation. For more than 35 years, she chronicled American social change in her widely syndicated columns for the Boston Globe.
She wrote about the values instilled in her as a child, by her father, who helped run John F Kennedy's first Senate campaign, and her homemaker mother, Edith. But Goodman only realized the consequences of leaving certain things unsaid about a dozen years ago, when her mother's health started to fail.
I think we all have this fantasy that we're gonna live to 90 and then, Kaboom! You know? But in fact the reality is that many of us will face a long period of being frail and declining. And I would say that my mother began to decline somewhere in her 80s, really.
After her mother moved to a long-term care facility a few miles away, Goodman found herself making medical decisions she hadn't dreamed of, especially because Edith began to suffer from dementia.
My mother could really no longer decide what she wanted for lunch, let alone what she wanted for health care decisions. So, I was faced with a kind of cascading number of decisions, for which I was unprepared. In fact, blindsided.
And I remember particularly one day when I got a call on the phone and I was on deadline. And the doctor said to me, "Your mother has another bout of pneumonia. Do you want her to have antibiotics?"
And I remember my hands being poised over the keyboard, saying, "What is he asking me? Is he asking me do I want her to live or die? You know, can I call you back? Could I have a minute?" And so, it was quite shocking to me that those decisions fell to me. I'd just never thought about it before.
What you're saying is, you never talked to her about these things ahead of time?
Well, we didn't talk in a way that was useful. From time to time if we were together my mother would say, "I never want to be like that. Pull the plug." You know. A lot of people say that. Well, there's generally no plug to pull.
Edith Holtz died at 92 in 2006. Four years later, Goodman co-founded The Conversation Project, a non-profit to urge people to express their end-of-life desires — to have The Conversation with those close to them — early on, before it's too late.
Advised by a group of healthcare professionals (including Dr. Forrow), its website has attracted almost a quarter million visitors; more than half have downloaded the Starter Kit, a kind of security blanket to jump start the process.
When you download the Kit, you'll find plenty of useful and practical advice on how to get an otherwise uncomfortable discussion going. For openers, you are asked to complete the following sentence: What matters to me at the end of life is…"
You're also invited to consider where you want to have The Conversation, with whom, and where. And there are suggestions of the actual words you can use to break the ice. For instance, "I need to think about the future, will you help me?"
We talked about nursing homes and you know, living at home. We talked about pain management. We talked about all kinds of issues that we wouldn't otherwise have ever talk about, until the time was upon us.
Husband and wife Chuck Koplik and Sue Tafler of Lexington, Massachusetts, recently had The Conversation with their only child, Sarah Yukich. Inspired by a workshop on The Conversation Project at their synagogue, Chuck and Sue — in their 60s, and in good health (except for recent surgery on Sue's foot) — sat down here, in their living room. They were most concerned about the effect on Sarah.
I could just tell I was unsettling her. So that was difficult.
I'm 32. I have a two-year-old. I'm an adult, and I know that, but at the same time interacting with my parents, I'm their child. I'm not their caretaker. And trying to think about that eventual role reversal is very scary.
So when they suggested having the conversation, your first reaction was…
I was happy that they were suggesting it. Because it's something that I have wanted to talk to them about. But I didn't really have any idea of how to bring it up.
Sarah says she was especially relieved when they said that moving them to Maryland, where she lives, for long-term care, would be acceptable.
And to have my parents say, "Oh, we've thought about this and are aware that that might happen at some point. And it would be okay." It was like, 'Oh, OK." So now I don't have to be sort of holding that inside, but not really knowing how to bring it up."
Was this about gaining control over the end of your life?
Yeah, I'm very much a planner and manager. I think in some ways it kind of gives me a little bit of a sense of control. I'm sort of starting to think about it.
Yeah, my biggest fears would be that you know, that I'd be in pain, or maybe I wasn't so clearheaded, and the doctors would be making decisions on what my treatment would be. And then they'd be making the decisions.
Individuals– not medical staff — should determine those issues, says The Conversation Project, by making their values and wishes known to the people they love.
According to a survey the group conducted, more than 90 percent of people agree, saying they should have The Conversation.
But only 30 percent have done so. Which is why they're expanding their public engagement campaign. Goodman herself, who used to cover social change and its influence on our institutions, now makes it happen.
Let me show you statistics. 70 percent of Americans say they want to die at home, and 70 percent of Americans are dying in hospitals and institutions…
They're co-sponsoring "Death over Dinner" parties—social gatherings to approach the subject in a cozy setting, so people can break bread while breaking the taboo…
Thank you all for being here…
They've also had some luck convincing TV writers to include family conversations about death in their scripts…
It's all about making the subject safe, bringing it home, because, The Conversation Project says, nothing will change until people start talking about it.
You have kids. You have grandkids. You have a husband. Have you had the conversation?
Oh yes, I've had it. My daughter's a comedian, and her first response when I said, "Let's have this conversation," was, "Can't we have lunch?" But we did get through it.
We did talk about it. And I have talked about it with my husband and with most of the people in my family.
People, when they have these conversations with each other, describe them as some of the richest personal moments they've had with people they love. Someone described having the conversation to us as a gift. It's a gift you give your family.
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