How to Die: the Unpleasant, Important Question

As the state looks for ways to improve health care and save money, the end of life is getting a lot of attention. 80% of the Medicare budget is spent in the last year of life but more than half of patients do not have the kind of death they’ve said the would prefer. One reason is that don’t explain their wishes to physicians or their loved ones.

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BEBINGER: Pam and Steve Rosenberg are in their family room, in Andover, trying to answer a questionnaire about what they want their last weeks or months of life to be like.

STEVE ROSENBERG: No.1 let me die in my own bed without any medical intervention.
PAM ROSENBERG: I agree with that.
STEVE: OK so, what if you can’t express your wishes? Is it up to me, in which case I’m never going to let you go. How do you know that science wont’ catch up to you in 5 years?

BEBINGER: Pam is 40. Steve is 53. Pam is pregnant with her first child. They have two sons from Steve’s first marriage. The Rosenbergs are both healthy. But Steve’s father’s death last year, was traumatic and both Rosenbergs hope that by being clear with each other now, they will avoid confusion and regret.

STEVE: I fall off a ladder and I am unconscious, on a ventilator, what are you going to do?

PAM: I know your direct wishes, I don’t get to do anything, I keep you on the ventilator ‘til the end of time, because you have all the time in the world to be dead, I know the sentence.
STEVE: So, what if you’re lying there?
PAM: You know my focus is on the family more than myself. I’d want to do what is best for all of you.
STEVE: And what if we’re both in car accident, I’m dead and you’re lying there.
PAM: This is awful.
STEVE: This is what happens

BEBINGER: It’s what happens, says Steve, even when you have clear answers about when to end aggressive medical care. He still lies awake at night wondering if he made the right decisions for his father.

STEVE: It’s not black and white and if you’re trying to take someone’s written orders and put them into a crazy situation, it can’t be done.

BEBINGER: Steve’s 81 year old father signed a Do Not Resuscitate order while battling bladder cancer. He was put on a ventilator during surgery, stopped breathing when it was removed, and went back on.

STEVE: We saw him in the ICU and he clearly wanted that ventilator out; even though it may not have been the smart thing to do. So we pulled it out and let him die

BEBINGER: Steve still wonders, did his dad understand that at that moment, the ventilator was needed to stabilize him after surgery…not necessarily something he would be connected to be for what remained of his life?

STEVE: We did follow his wishes, butI’m not so sure that it would have been his wishes. That’s the hard part. It’s like, is this what you really meant? So, I still question what we did.

BEBINGER: Which is why, for Steve and Pam, specific answers are not the most important part of end of life planning. It is to appoint someone who knows your wishes and is willing to make very difficult decisions on your behalf. Decisions that depend on an accurate, not just optimistic assessment…which Steve and Pam didn’t get…but also didn’t ask for.

PAM: The care he was being given was excellent. It’s by design, optimistic
STEVE: I think the health care system could have sat us down and explained, even though we didn’t ask, exactly what the medical situation was more proactively because at some point you shut down. You stop listening.

BEBINGER: About a third of terminally ill patients remember having a conversation with their doctors about their end of life wishes…according to a study out of the Dana Farber Cancer Institute in October. Lead investigator Holly Prigerson says talking to patients about their expectations and how much medical intervention they want is not associated, as doctors fear, with making patients more hopeless, depressed or anxious.

HOLLY PRIGERSON: You don’t want false hope at all, and uncertainty can be more anxiety producing than knowing something, even if bad news. So, the evidence from this report would suggest that’s there some benefit, with no apparent obvious downside.

BEBINGER: Prigerson says one benefit of talking to patients about their priorities seems to be earlier enrollment in a hospice program…where the focus shifts from treatment, medical intervention and often hospital care to palliative care. That means keeping patients comfortable…often at home.

PRIGERSON: There was a clear response more palliative care better quality of life, more aggressive care, significantly worse quality of life.

BEBINGER: And Prigerson says there’s a cost benefit to end of life discussions as well.

PRIGERSON: We called it the multi-million dollar conversation because the costs of hospice are so much lower than the cost of being on a ventilator.

BEBINGER: That shift in Massachusetts could save two billion dollars a year.

JIM CONWAY: It’s an awful lot of money.

BEBINGER: Jim Conway chairs the End of Life committee on the state’s Quality and Cost Council. Surveys show that 70% of Americans, like Pam Rosenberg, want to die at home. In Massachusetts 20% get their wish.

CONWAY: When the Quality and Cost Council began looking at hospice care what was driving us first and foremost was the fact that we were doing such a miserable job of respecting patients’ wishes to die at home. That said, we also very quickly began tripping over the financial opportunities.

BEBINGER: Which show the savings if Massachusetts moved from 38% of patients near the end of life using hospice to 70%. Conway says one barrier is the medical culture here where the mission of many teaching hospitals is testing and finding the next cure. Another is that end of life is not always part of coordinated care program… as it is on the North Shore. That area has the highest percentage of patients who have 6 months or less to live using hospice. Diane Stringer is the CEO at Hospice of the North Shore, one of the oldest programs in the state.

STRINGER: It’s really been 30 years of forging relations, a lot of education and outreach. And end of life care is all we do, we’re not a division of a larger corporation and I think that focus has really served us well.

BEBINGER: Across Massachusetts, about half of hospitals have a hospice program. Marie Trottier of Boston hit that barrier one night last February. Her husband, Allan Macurdy had been in the hospital for 9 months with complications from a seizure.

MARIE TROTTIER: I didn’t want to give up hope, but I also knew that every week the doctors were making changes and nothing was getting better. And Allan was saying to me, fix it. I’m in pain. I can’t stand this; fix it.

BEBINGER: Trottier asked her husband’s doctor if there was anything else to try. He said no. So, although Trottier had no experience with hospice, she decided it was time to learn. Trottier’s husband was in Youville Hospital in Cambridge, which did not have a hospice program. So she went home, turned on her computer and after hours of research settled on Partners Hospice. The next day she persuaded the two institutions to affiliate so they could care for her husband.

TROTTIER: It is very unusual. We were able to get a joint contract signed, literally within 3 weeks.

BEBINGER: End of life experts in Massachusetts say expanding hospice use is just one issue the state needs to address. The End of Life committee of the Quality and Cost Council is also recommending that the state manage where new programs open, require accreditation and require that hospitals offer hospice by March next year. Health and Human Services Secretary JudyAnn Bigby agrees that the state needs more hospice services and is considering suggestions about how to expand and measure the effects. Bigby acknowledges that patients may resist using hospice if they think it will mean they are denied more than palliative care.

JUDYANN BIGBY: It would be terrible if the state or any other payer were viewed as being in the business of cutting off care to save money. On the other hand, people suffer a lot at the end of life because more and more and more is done, with little benefit. And there are consequences of it that may actually decrease the quality of life, decrease the time they have with their families and those are important things for us to acknowledge.

BEBINGER: Bigby says the best way to make sure a patient gets what she or he wants in the hospital is to have the conversation Pam and Steve Rosenberg are winding down.

STEVE: OK, so what do you want to do?
PAM: I’m more on the end of, I don’t want to give up early. And I probably want to come home, but I don’t want to upset everyone. So you’ll have your hands full.
STEVE: No I’m not, I’m 13 years older than you.
PAM: We obviously don’t have any answers (laughter).

BEBINGER: That’s round one of a conversation Pam and Steve say they will need to revisit as they get older and their children age. Life and death are, as Pam puts it, moving targets.