Synopsis: It’s a fine line between preserving life and prolonging death. An award winning science writer discusses her experience observing how medical professionals and patients differ in their acceptance of impending death, and what families need to know to navigate the end of life toward a “good death.”
Host: Nancy Benson. Guest: Katy Butler, author, Knocking on Heaven’s Door: The Path to a Better Way of Death
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A Peaceful Death
NANCY BENSON: a hundred years ago, most people didn’t get old. Back then; the American life expectancy for women was 55. For men, it was 50. Today, most of us can expect to live a lot longer. The average person who’s 65 today will make it to their mid 80’s. And some experts think it’s a completely new life stage.
KATY BUTLER: It was so rare in the past that many people lived to be over the age of 80. The result is that both people over 80 and their children, who are gonna be helping take care of them, are really missing a map to what this stage of life is really gonna look like and what’s gonna be required of the children who are, in fact, gonna be more and more the caregivers for these very old, and sometimes very fragile, parents.
BENSON: That’s award-winning science writer Katy Butler, author of the new book, Knocking on Heaven’s Door: The Path to a Better Way of Death. She says doctors deserve a great deal of credit for extending our lives, but staving off death by any means possible isn’t what most people want. They don’t want to be hooked to machines and in pain. In other words, they don’t want to hang on at all costs for weeks, months or years.
BUTLER: There’s a point where prolonging a life becomes extending the dying. It’s hard to know exactly where that line should be drawn. Right now, I think we have a taboo against even talking about the fact that there comes a time when life stops being a blessing and becomes a curse. But, I do believe there could come a time when I’m in so much pain, where my life really needs to come to its natural end.
BENSON: Doctors won’t help you do that, so Butler says at some point, family members have to stop listening to medical advice and simply trust their guts about when it’s time to say goodbye. If you really believe that “dad wouldn’t want it that way,” then speak up and make it stick.
BUTLER: If you’re just passive, the chances are excellent that you will end up with a type of death that you don’t want. Three quarters of Americans say they want to die at home, but in fact, fewer than a quarter do. A fifth of people die in intensive care, which is, in my opinion, a bad death where people are often unconscious, they can’t say goodbye to the people they love, they’re strapped down so that they won’t tear tubes out of their throats. These are terrible deaths. If we don’t take back our moral authority and make our own decisions and tell our doctors when to stop, we can get on a conveyor belt to that kind of death very easily.
BENSON: Butler learned the hard way. She says she was completely unprepared when her father’s health turned on a dime at the age of 79.
BUTLER: My father had a major stroke that left him unable to fasten a belt or finish a sentence. This is quite devastating for him because he had been a college professor. For the first couple of years he really struggled mightily to restore himself, but then after a couple of years he said, “I’m never gonna get better.” I think from that point on, he really had outlived his happiness at that point.
BENSON: But when her dad needed surgery to repair a painful hernia, his cardiologist insisted a pacemaker be installed first. Butler says it was a mistake.
BUTLER: In a 15-minute conversation, my parents agreed to the pacemaker without considering the long-term implications; that this device could very well keep my father alive into a time when he had absolutely no reason to live. Sadly, that is exactly what happened. My father lived six and a half years after his stroke, and the last three years were marked by dementia, near-blindness, misery.
BENSON: But why do we let that happen? Butler says we’re less prepared to deal with death than we used to be, so we seek to push it away. When lifespans were short and antibiotics were only a dream, death could come at any time. We couldn’t stop it, so we reluctantly accepted it. Now, we simply refuse to admit the inevitable. What’s more, Butler says doctors have plenty of reasons, both emotional and financial, to recommend one more treatment, and one more after that.
BUTLER: The emotional incentive for a doctor is simply that it’s so hard to feel that you’ve failed with a patient and that a patient is dying. Now, I don’t see death as a failure, but many doctors do. It’s very difficult though. I think we have to have a lot of sympathy for doctors here because they’ve been trained to save lives. The fact that they’re also going to be involved in helping people have good death is really something that’s not taught in medical school. Can you imagine going in and seeing a patient that you have tried to keep alive and tried to keep healthy for several years, and turning off the device and actually watching your patient die in front of you?
BENSON: Butler says some specialists are better at that than others. The ones who have trouble tend to be walled off in a corner of our very fragmented health care system. Cardiologists, for example, are trained to improve the function of the heart, which almost by definition means prolonging life. That’s all they do. Butler says other specialists are better able to look at the big picture.
BUTLER: Critical care doctors who work in intensive care have seen a lot of deathbeds. They’ve become comfortable with the notion that taking off a respirator is not in fact killing someone. It’s allowing that person a natural death of their underlying disease. But, they’ve had 20 or 30 years to really think this through.
BENSON: Butler says there are also enormous financial incentives for doctors to do more, not less. Medical devices are extremely profitable, and most doctors are paid for doing procedures, not for talking about whether the procedure is the right thing to do. Doctors are also comfortable doing more because it protects them from malpractice suits.
BUTLER: There are very few suits for wrongful life. There are lots of suits for wrongful death. Doctors at this point, and hospitals, are much more afraid of being sued by a family for doing too little, then for doing too much. But, the reality is these suits are in fact happening. There’s one going on right now that involves a woman being resuscitated, even though she had a Do Not Resuscitate order. I think we may see more suits like that in the future.
BENSON: But while Butler’s father died too late, she says her mother died too soon because she feared sharing her husband’s fate. It taught Butler that a perfect death is a very rare thing.
BUTLER: I think we all die either too soon or too late. What I admire about my mother is that she was willing to die too soon. She refused open-heart surgery. So, she died at the age of 85, when it’s possible she could have lived to be, maybe, 90, if the surgery had gone well. But, she died a very conscious death and she did not drag her children through years and years of suffering, and in and out of the hospital, possibly dementia. She died very consciously, and she did her best to reconcile with her children, clean up her house. Really, she prepared very consciously for her death, and I feel like her death will continue to teach me for the rest of my life.
BENSON: The lesson for caregivers, she says, is that there is no way to caregive perfectly. After our loved one passes on, we all have regrets. But studies show that patients and their families generally want much less treatment than their doctors think. So when we ask ourselves, “What would I want,” we have to trust that small silent voice we hear in reply.
You can find out more about Katy Butler’s book, Knocking on Heaven’s Door, at katybutler.com. Our production director is Sean Waldron. I’m Nancy Benson.