Ask the Author: Ask the Author Live: Atul Gawande : The New YorkerAsk the Author

ATUL GAWANDE: Welcome! Thanks for joining. I’ll start taking questions.

QUESTION FROM JBIROSCAK: Thank you for this much needed article. As a hospice chaplain, however, how I wish you would have mentioned the role that chaplains and social workers, in both hospitals and hospices, play in facilitating end-of-life discussions. Some physicians excel at these conversations, while others benefit from the leadership and guidance of different health care professionals at these critical junctures. Alleviating anxiety, grief, and pain is a daily part of my work, as is journeying with patients and their families to a place of peace and acceptance. Through my work I have learned that it is possible to live the last part of life fully and to have a good death. The decision-making process is the first step on this journey.

ATUL GAWANDE: Yes—there are numerous people on hospice teams: chaplains, social workers, and others. When I went on rounds with Sarah Creed, I didn’t get to see them in action. But the fact is, a team of people with real expertise were needed to walk patients through those end stages. And you’re ginger about the reality: many of us doctors are NOT as good as we should be at helping people get to the best decisions for themselves.

QUESTION FROM LRAO: Dr. Gawande, These issues are so culture-specific. It will take a generation of change makers to alter the cultural mind set where the fear of death is so strong and stark. Do you agree? How can this start at all levels of society, not just doctors and hospitals? The “death panels” twist to the health care bill debate derailed a well meant effort to start a change in the culture of how death and the process of dying is perceived. It will take time and effort. Thank you for your efforts at documenting this struggle so well. You are an amazing writer and are an able foot soldier in this cause.

ATUL GAWANDE: I really am not sure that the issues are THAT culture-specific. There are differences to be sure, but I think it is common everywhere for medicine to come across people who hope against hope that they can be saved. I see this just as much among my family in the Indian village where I grew up as I do in Boston.

In talking to clinicians about why we so often fail to be effective at the end of people’s lives, I was often told: My patients expect too much. Their families are unrealistic. They’re in denial.

But I came to think: isn’t that just human nature? Isn’t that how I would be when I’m told I have an incurable heart condition or cancer? It seems to me our job in medicine is to just deal with it. If we have to wait for people to stop yearning for the long tail—for the lottery ticket—in order to help them, we will be hurting a lot of people for a long time to come. Instead, we need to become more effective in using the techniques that experts already have for walking people through these moments in their lives.

QUESTION FROM C. DENAN: In the article you talk about how Aetna allowed people to have concurrent (both curative and comfort) treatment while enrolled in hospice? Is concurrent treatment an option for those enrolled in hospice now across the board? or do they still have to sign a waiver saying they will stop curative treatment before they can enroll in hospice?

ATUL GAWANDE: It was an Aetna experiment that I don’t believe they have taken to all Aetna patients. The health reform bill that passed this April included a Medicare pilot project to allow 12 communities across the country to try testing this approach of not requiring terminal patients to sign away their ability to receive curative treatment (however unlikely to be successful) in order to get hospice services.

QUESTION FROM ASHLEY B.: At the hospice I’m employed with, we’ve seen doctors shy away from talking about the ‘h-word’ with their patients, but jump at the idea of ‘palliative care’. What can we do to make physicians understand that hospice is just an extension of palliative care? The comment we hear from caregivers most often is, “We wish we would’ve known about you sooner.” Shouldn’t that be a wake-up for physicians? For the benefit of their patients and their patients’ families?

ATUL GAWANDE: The comfort level with “palliative care” versus “hospice” is more a matter of the euphemisms we use. Telling a patient that you’d like them to consider hospice now seems to people like you’re telling them that you want to “give up”. “Hospice”=”morphine drip” to many people. It more or less did to me, until I actually had a chance to see what hospice was. So now we talk about “palliative care” as a way of not talking about hospice—or death for that matter.

But already that’s beginning to change. I was just recently called in to provide surgical consultation on a patient in the hospital with a metastatic cancer that is at end stage. She is getting sicker by the day and I’m not sure she’ll be able to leave. Her medical team asked if they could get palliative care involved. She was adamantly against it. “I’m not ready to give up,” she argued.

QUESTION FROM JACK VAN DIJK: Mr. Gawande your article is good (but too long). I am again somewhat disturbed by leaving off the perspective on end-of-life habit and procedures in different countries. The Netherlands are following a total different path. Yes, I am aware that the Dutch, missing nationalism, machoism and being mostly very rational people (but with an emotional streak) and therefore have an easier task to accept changes in behavior, but nevertheless, the civilized world can learn. We let our father die, he told us to do so and you do not disregard the wishes of a Dutch sea captain, which he was. He wanted out, although with much annoying medical care he could have lived longer, but he did not feel it was worth losing the quality of life as he defined it. Same with our mother, who had, in the last ten years of her life, had harped on the refusal of loosing quality of life. Would I wanted them to be around longer, no, it was time to go. I am 72 and in excellent health, having to start another career due to the loss of retirement benefits. I expect another twenty years, I would not want a last two years of pain and suffering. On the other side of the family, my brother’s mother-in-law was in dialysis. One day she decided that enough was enough, they had a party, the plug was pulled and she died. Probably was expertly helped. My mother's sister, the last of that family, had congestive heart problems, anxiety attacks and in bad shape. The morphine helped and helped to get out.

ATUL GAWANDE: I don’t mean to completely disregard the fact that culture does make a difference. Success in shifting end of life care in places like Oregon and LaCrosse Wisconsin have happened because the efforts to make improvements has indeed engaged more than just the medical profession. They have involved the community at large as well. Likewise when I talked to a Swedish oncologist about their shift in the last two decades from ~90% of cancer patients dying in the hospital to

The fundamental issue I found, however, was not the percentage of people at the margin who really do want to spend their last days on a ventilator with a feed tube and dialysis machine, or getting knocked down by a fourth round of chemotherapy with a miniscule chance of helping. Perhaps there ARE more of these folks in America than elsewhere. But the crucial problem is that for most people, this is misery. They don’t want this when they really get down to thinking and talking through it. The failure of our system is that we are not good at helping people sort out what is most important to them when they are dying and then helping them achieve it.

QUESTION FROM EG: My father is in his late 60’s and he has metastic throat cancer in his lungs. He is absolutely destroyed by the chemos and is doing a trial now. He and Mom just can’t “not try.” My sisters and I don’t want him to continue so he can enjoy what time is left but it’s so difficult for them to talk about. The doctors are very much following his lead and keep offering more and more while saying “this is not a cure.” They are definitely resisting making the suggestion that the treatment is worse than the disease. It’s so sad to see him suffer from the treatments that we all know are doing nothing. I’m afraid to broach the subject of stopping or saying, “hey, read this article,”—How can I bring it up that we think he should stop?

ATUL GAWANDE: What a heartbreaking story. The thing I slowly came to realize in the course of writing the article was that pushing people to do X versus Y is not likely to be successful. Instead, it’s asking the kinds of questions Susan Block laid out in her mental list for those “breakpoint discussions.” One of them, for instance, is to say, yes, it seems like the doctors are doing everything they can, but if options become more limited, how does he want to spend his time? What’s most important to him? And then as the answers emerge, it may be that you can discuss whether the treatment is actually defeating these priorities, worsening his life, or even shortening his time.

ATUL GAWANDE: These are, by the way, not always completely satisfying discussions. I broke the bad news of an incurable and rapidly aggressive cancer to a patient of mine recently. I tried to think about the best ways to frame it. I said, the clear option to give her a chance of a lottery ticket, of actually controlling the cancer, would be chemotherapy and radiation. But then I said the hard thing, which was rare for people to live more than a year or so. If she proved to be one of them, we would dance in my office. But we also needed to think about what was most important to her if she wasn’t one of them.

When I talked to her a day later, she was angry with me. She told me she read on the internet about people who were cured and they said not to listen to the doctors.

I didn’t sleep very well that night. I had hurt the trust she had in me. And suppose I was wrong?

But then a week later, when we talked again, she was grateful. She pushed ahead with further opinions and then treatment, but I think we are also beginning to think about the limits of what she wants to take as this goes along. Maybe.

QUESTION FROM LILY M.: Dr. Gawande, How do you think doctors should be taught the skills they need to talk about death? I’m curious if it can be taught in a class, or if these are skills that have to develop over years of practice. And thank you for covering this topic.

ATUL GAWANDE: I didn’t get to include this in the article, but I actually sat in on a class where residents in the first couple years of training went through a role-play session of asking a patient about whether they would want to be resuscitated if their heart stopped. Everyone was embarrassingly bad—too brusque, too convoluted, talked too much. They were just trainees after all. But I asked them how often they have to have these conversations. It averaged 2-3 times a week on a medical service. And then they got advice and actual training on how to do better. It was like having a tennis coach look at my forehand and tell me what to do better. And the palliative care specialist who was teaching said you could measure marked improvements in how they do over the course of repeated sessions like these.

Last thing about this: we know from studies of communication skills that experience alone does not produce improvement. You can communicate badly for thirty years. But deliberate practice with coaching makes for measurable improvements. And that’s likely what we need in medicine. We train and retrain for surgical skills. We probably need to do so for these discussions with terminally ill patients, as well—especially given the stakes.

QUESTION FROM GUEST: One of the things that was most interesting to me about your article was that it’s not just patients and their families who are overly optimistic and want to exhaust every option, but doctors, too. I was diagnosed with stage III ovarian cancer not long ago, and, thankfully, I currently show no evidence of disease, but occasionally I feel like my doctors are a cheerleading squad. I wonder sometimes whether I am being led down the garden path—I know that the statistics for long-term survival are not good for this disease. It seems like it’s a fine line, for doctors, between encouraging their patients and being realistic. Doctors don’t want to kill all hope, but they also don’t want to bring their patients into unnecessary or early despair. It seems like a very difficult balancing act.

ATUL GAWANDE: It is extremely tough. But I know I would feel terrible selling you short on your chances—and somehow not as terrible overestimating them. We definitely do NOT want to kill hope. This should not be either/or, though. It has to be possible to talk about what you could hope for in the long tail of possibility, while also discussing what to prepare for in case it doesn’t materialize.

QUESTION FROM SARAH: Dr. Gawande—Thank you for your thoughtful article. Two questions: 1. How do you suggest starting a conversation about end-of-life wishes? Particularly when the patient is trying to stay optimistic or doesn’t want to focus on his death. 2. My father is dying and I don’t see his (otherwise wonderful) oncologist having this conversation. I don’t want to start it or lead it, though I am happy to have it. How should I proceed? Thank you, Sarah

ATUL GAWANDE: Faced this question with my father recently. He actually has the same kind of spinal cord tumor Jack Block had—although my father’s is inoperable. He started to develop early signs of quadriplegia as the tumor grew. He was going to undergo an operation to create more space for the tumor. But once again, it had a 20% chance of quadriplegia. I remember, we sat in the living room and I simply began by saying that it would help me if I understood some things about his priorities and wishes. And then I ran through some of Susan Block’s list: if things get bad, what is he willing to go through to stay alive? If options become limited, what is the way he wants to spend his time? What’s most important to him, knowing the tumor is eventually not curable? Those kinds of incredibly hard questions. Some he was ready to answer. Some not. But by the end, he and I came to realize, if the operation left him quadriplegic, just eating ice cream and watching television wouldn’t be enough for him. He’s too social a creature—and as a surgeon perhaps someone who wants more control than that.

Thank you to everybody who participated. My apologies to those whose questions I could not get to.

via newyorker.com

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