'Best Care': We Make Death Harder Than It Has To Be
Many people hope to die peacefully at home surrounded by their loved ones, but unfortunately it usually doesn't turn out that way. Thirty percent of Americans die in nursing homes, more than half die in hospitals and nearly half of those people spend their last days in intensive care units.
In his book The Best Care Possible, Dr. Ira Byock argues that the way most Americans die is a national disgrace — an ethical, moral and economic crisis that will get a great deal worse as the baby boomers age.
Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center, says that modern medicine has provided unprecedented power to treat disease and help people live longer, but has also changed the focus of health care.
"We have a disease-treatment system more than a health care system these days," Byock tells NPR's Neal Conan. "That's not necessarily a bad thing, but it's not enough. We have to begin to care well for people who are living with these diseases, not simply the physiology and pathology itself."
Byock describes his decades of work in hospice and palliative care that inspired his quest to transform end-of-life care.
On his patient 'Maxie'
"Maxie ... never wanted to talk about the end of life. She'd never made out an advanced directive, a living will or power of attorney for health care, like, you know, most of Americans. ... Only about 30 percent of adults have these documents. ... But then she became seriously ill. ... It was a shock to the family.
"They couldn't imagine that there was anything worse than their dear mother and mother-in-law ... aunt and grandmother dying. And yet, they found out — as so many of our patients eventually do — that there are worse things than having someone you love so much die. There's having them die badly, suffering as they die.
"And maybe the only thing worse than that is looking back and realizing in retrospect that much of their suffering was unnecessary."
On consulting patients on advanced directives
"When I talk to people and encourage them to fill out these advanced directives, these days I don't start by saying, 'This is how you can protect yourself or retain control over your body.' I say, 'This is a way for you to take care of your family if a crisis happens and you're unable to speak for yourself, and they, those that you love, will be left to struggle with decisions about your treatment and care.'
"... You can perhaps lessen the burden that they're going to feel as they struggle with these decisions by shouldering it a little bit, by telling them what you think you would want. They're still going to have to fit those values and preference to the particular condition and treatments being offered, but at least you can lighten the load a touch."
On the challenges of delivering bad news to patients
"The open secret among clinicians is we really care about the people who are our patients. ... That's not unwholesome. ... We get close to these people, and I think ... aren't clear in their communication. It's wrong. It's not good practice.
"But in fact, we hate to make people cry. And it sounds funny to say, but in fact I've seen so many good clinicians — oncologists come to mind, but also cardiologists — who are reticent to tell somebody that their disease is incurable.
"... I know, because I've been doing this for a long time, that clarity, although it may cause acute grief, is actually a gift in this sense, and it's the right thing to do. In this case a sharp cut hurts less."
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