Hope and the art of dying
I often see television commercials for a cancer-treatment center in which “patients” rave about the caring treatment they received there, and compare it to the hopelessness they felt before they checked in. “My doctor told me there was nothing he could do,” they say. “The doctor said I had a few months to live. He wanted to give up.” The manipulation in these ads strikes me as distastefully blatant — the difference between death and survival, they imply, is how much your doctor is willing to fight. Terminal diagnoses come from doctors who don’t care enough to save your life.
Refusing to accept a death sentence is sometimes a good idea. But a doctor who gives his patients a frank diagnosis is not necessarily heartless — and in fact, the failure to be upfront can be harmful to a patient’s well-being. Atul Gawande examines the paradoxes of end-of-life care and treatment for terminal illness in an excellent article, “Letting Go,” in the August 2 New Yorker. Gawande is a surgeon and a med-school professor, and his thoughtful articles on health care are a major reason I subscribe to the New Yorker. This one covers a lot of ground in looking at how medical technology has changed our notion of “dying,” and what improving patient care might actually mean.
Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.
These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are?
The article looks at how hospice care is “helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.” Gawande points to a study that showed that doctors are actually far more likely to overestimate a terminally ill patient’s survival time than to underestimate — and that’s when they’re willing to make a guess at all, which they are understandably reluctant to do. No one wants to talk about death, and patients are liable to feel betrayed by a doctor who tries to get them focused on quality over quantity with the time they have left. Gawande knows this from experience as well as from statistics.
The article is long and often grim, but very much worth reading and pondering. I was struck by Gawande’s reference to Stephen Jay Gould, who argued in his 1985 essay “The Median Isn’t the Message” that “it has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity.” Gould preferred to rage against the dying of the light, and that worked for him — he survived a grim cancer diagnosis. But, Gawande says, “The trouble is that we’ve built our medical system and culture around the long tail” — that is, around the thin possibility of survival. “Hope is not a plan,” Gawande writes, “but hope is our plan.”
As Christians we have a broader definition of “hope” than simply “hoping to stave off death.” When it comes to facing death, in a spiritual sense, hope is our plan. How do we apply that to the realities Gawande’s article discusses?
P.S. You can read a transcript of a live chat with Atul Gawande about end-of-life care that took place yesterday afternoon. The very first question touches on something I thought about as I read: what is the role of hospital chaplains in preparing patients to discuss end-of-life issues?
P.P.S. In the comments, Jean Raber mentions a Commonweal article by Mary Lee Freeman that you might want to read (or reread) in conjunction with Gawande’s piece: “Caring for the Dying: My Patients, My Work, My Faith.”
I am surprised that the reference to end of life counsel refers only to the Middle Ages and not to the pioneering work of Elizabeth Kubler Ross in her Classic book “Death and Dying.” In fact innumberable doctors, social workers and chaplains follow her book in their work. My wife works for an outstanding oncologist who is very good at helping patients accept the terminal nature of their illness. Again the lack of mention of Kubler-Ross is startling. Really disturbing Gawande makes no mention of her. Mor so that nobody noticed.
Having said that Aetna’s try at allowing treatment for those attending Hospice seems like a great idea. Seems the Hospice setting helped patients forego unnecessary expensive treatment. As far as unnecessary tests that is a problem with any patient whose doctor wants to please his hospital affiliate by generating income. Understandably a terminally ill patient will usually agree to anything if she is told there is hope.
I loved the criteria the daughter learned after asking her father whether he wanted to take the risk of being paraplegic. He said as long as he could watch a football game and eat ice cream which he would have been able to do. So he consented.
Giving up hope of one’s life can actually be freeing in many ways, and I think most doctors have yet to come to terms with this fact.
Dad died in May after being on home hospice care for a year and a day. For many years, doctors kept holding out new treatments for his COPD, but eventually the side-effects from the meds caused more complications. When he got sick a year ago, he refused to go to the hospital again, and the doc sent in the hospice nurses.
For most of the time he was on hospice care, he actually improved, not only physically (because he wasn’t worn out with endless trips to the docs and hospital), but mentally and perhaps, in his way, spiritually.
He enjoyed flirting with the nurses. He appreciated my mother more. He called up people he hadn’t seen in years to reconnect and talk over old times. We’re a stand-offish lot, but we sometimes got to the point of hugging briefly. There was sadness, but there were also an awful lot of laughs good days, too.
I was surprised to be given a letter Dad had written to me shortly before he died, and even more surprised by the feelings he expressed. My mother told me he’d had a talk with the social worker, saying there were things he wanted to tell his kids, but couldn’t do it face to face. She suggested the letter. It meant a lot to me, it helped him let go of some things, I hope. Certainly, had Dad opted to keep pursuing treatment, such a thing would not have been discussed.
One of the things that I hearkened back to several times during Dad’s last year was Mary Lee Freeman’s piece from Commonweal six years ago about caring for dying patients. That piece is an absolute gem, I’ve re-read it many times, and I recommend it highly.
http://commonwealmagazine.org/caring-dying-0
“Giving up hope of one’s life can actually be freeing in many ways, and I think most doctors have yet to come to terms with this fact.
Jean –
A wise doctor once told me, “Doctors are trying to kill death”.
Interesting article. He lists some questions:
1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can’t eat on your own?
Are Catholics allowed to say NO?
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I think Catholics should make copies of the prayers they want said at their deathbeds or record the prayers and hymns they want to say/hear in their dying moments.
http://www.catholicdoctors.org.uk/Miscellaneous/Prayers_for_the_dying.pdf
“Are Catholics allowed to say NO?”
And who will stop them? Who, that is, for whom you have trust and respect?
“I think Catholics should make copies of the prayers they want said at their deathbeds or record the prayers and hymns they want to say/hear in their dying moments. ”
When my friend Tina died, the cat sat by her the whole time purring. I can’t think of a better prayer or hymn, and I’ve told Raber not to let me die cat-less.
Jimmy, I’m looking at my living will worksheet. Amazing how many questions I answered with NO!
http://www.health.harvard.edu/downloads/LWforms.pdf
To the warm or cold question, I said WARM!
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Jean, a cat would be nice. For the question on what items I want near me, I said put my brown scapular on me. (That way, I’ll get out of Purgatory on the first Saturday after my death.)
http://www.sistersofcarmel.com/brown-scapulars-brown-scapular-of-our-lady-of-mount-carmel.php
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I attached a copy of an article by Jane Brody to my instructions:
http://www.nytimes.com/2003/12/30/health/facing-up-to-the-inevitable-in-search-of-a-good-death.html
At Ross Douthat blog he offers an interesting quote from Dr. Gawande’s “Letting Go The Paradox of Hospice” –
“Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.”
— Atul Gawande, “Letting Go”
“Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.”
I don’t think it’s curious at all. It’s the fact that somebody is visiting YOU, as often as needed on home hospice care, and asking what YOU want instead of making you chase around after pointless testing and treatment. Anything Dad wanted, from ribs every day for supper to Louis Prima CDs, he got.
Home hospice care does take a big physical toll on elderly caregivers. There’s a lot of lifting and turning my mother, a 77-year-old arthritic, could not have done by herself.
Those that insist that life is to be held on to well beyond the limits of reason and science, are possibly not believers in why we are all here to begin with:
“Death is not a leap into a void, but is being flung into the hands of the Lord.” Attributed to Pedro Arrupe, SJ, by Peter Hebblethwaite, Don Pedro in History (article), America, February 16, 1991.
“Part of the unique burden of human existence is that we grieve over death. It is also our unique joy to know that the human spirit is too special to disappear just because death closes one door.” James Wall, Christian Century, 10-19-94.