The Benefits of Discussing End-of-Life Issues: Atul Gawande in the New Yorker
The following is an excerpt from a long essay by the outstanding medical writer, Atul Gawande, appearing in THE NEW YORKER, on the problems we face dealing medically and humanly with end-of-life issues. The piece in its entirety can be found at www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all#ixzz0v5MfdpeW
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Letting Go
What should medicine do when it can’t save your life?
by Atul Gawande
The New Yorker, August 2, 2010
This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?
In late 2004, executives at Aetna, the insurance company, started an experiment. They knew that only a small percentage of the terminally ill ever halted efforts at curative treatment and enrolled in hospice, and that, when they did, it was usually not until the very end. So Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. A patient like Sara Monopoli could continue to try chemotherapy and radiation, and go to the hospital when she wished—but also have a hospice team at home focussing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe. A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.
This was stunning, and puzzling: it wasn’t obvious what made the approach work. Aetna ran a more modest concurrent-care program for a broader group of terminally ill patients. For these patients, the traditional hospice rules applied—in order to qualify for home hospice, they had to give up attempts at curative treatment. But, either way, they received phone calls from palliative-care nurses who offered to check in regularly and help them find services for anything from pain control to making out a living will. For these patients, too, hospice enrollment jumped to seventy per cent, and their use of hospital services dropped sharply. Among elderly patients, use of intensive-care units fell by more than eighty-five per cent. Satisfaction scores went way up. What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.
The explanation strains credibility, but evidence for it has grown in recent years. Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.
July 30th, 2010 at 9:58 am
IMO the snippet in Andy’s post here does a good job of capturing the general spirit of the entire article. Nevertheless, I recommend that everyone here follow the link or pick up a copy of the New Yorker and read the whole thing.
July 30th, 2010 at 10:31 am
I haven’t read the full article but look forward to doing so. I am in the process of reviewing and updating my Medical Directive (“living will”) and Medical Power of Attorney documents. When Elizabeth was given her terminal diagnosis five years ago her first response was to ask our friend Bee Zollo to be her hospice nurse. She quickly decided she would rather spend two months living than 18 months dying. She told many people over the next two months that, “Aside from this one lousy detail, these have been a couple of the happiest months of my life.” Her openness, thanks to hospice care, enabled an outpouring of love from her students, their parents, and family. I would urge everyone to make give these matters careful thought while you still can.
July 31st, 2010 at 2:23 am
Excellent article, Any. Thanks for posting.
I wish everyone would read the long version of the original article in the ‘New Yorker’, but I really like the shorter version you present here as an appetizer, or even by itself.
I think as great as the article is in offering as much insight, information and teaching as it does, it is also plainly too long?
I read all of it mostly because it was so well written, and engaging, to the point of fascinating. (and because of Todd’s recommendation to read it.
My point is that it was a great idea of you to write a short version for inspiration to the longer one, and/or for those who just do not have that much extra interest, or time.
Thanks again, Katrin
July 31st, 2010 at 10:53 am
Three of our four parents received hospice care, in very different settings and durations (one at home, two in a hospice center). The care was very professional, compassionate, and calming. Both the patients and the family members felt a loving environment in a difficult time. In one instance, upon the death of one of these parents, a chaplain came immediate, but not intrusively, to find out if we needed anything that she could offer in the way of counselling, prayer or support. It was all most appreciated and seemed an appropriate setting in which to end life.
July 31st, 2010 at 6:59 pm
PS: For myself, I was not that surprised about what the ‘Hospice’ side is like, but more so by what the other, plain ‘medical’, and without hospice way is like.
That never really occurred to me about how alone you are at the end, and all anybody cares about is keeping you alive and sticking tubes in you. And the part about pleasing the family, or doing it for them.
A friend of mine whom I sent the article, said the following:
‘The part I found most valuable was when the daughter said to her father, “I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.” And he replied, “Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.”
That question, and a person’s answer, is so much more to the point than all the typical questions about whether someone would want antibiotics, resuscitation, tube feeding, etc.!’
August 5th, 2010 at 1:16 pm
Katrin, when my mother was leaving Johns Hopkins, she left with hope due to advances in palliative chemotherapy. She chose to head back to her home, where the doctor set-up conditions that she was guaranteed not to meet so she never got those palliative chemotherapy drugs. I am not sure which would have been better. But when her leg broke as she tried to stand due to a tumor in her leg bone, she came to a decision that a hospice was the preferred choice. I remember her wish was to live until Christmas. She lived until the 24th of December and when she asked what day it was that morning, my father or sister said Christmas Eve. She replied, “for me it’s Christmas”. That was how we knew that she knew that was her day to die or pass away. Also, she asked where I was as I was traveling up from Virginia. When she found out I was only about 2 hours away, she said that was good as she knew I would be there to help everyone out and then shortly after drew her last breath. I am sure she said other things, but needless to say, I tend to remember the statements that pertained to me more than the others.