Aggressive medicine, culture of denial may be partially to blame

By DIANE TOROIAN KEAGGY

Not long ago, female baby boomers waged a childbirth revolution. They refused to be knocked out during their deliveries or to see their husbands banished to pace public waiting rooms. Childbirth, after all, is a natural act to be supported, not pathology to be treated.

Dr. Ira Byock is calling now for patients, families and doctors to revolutionize another essential human experience — dying.

"We boomers have to take back the end of life the way we took back the beginning of life," said Byock. "The same shift needs to happen" in care at the end of life.

On June 3, Byock will address a joint general session of the Catholic Health Assembly and the Congress of The Supportive Care Coalition: Advancing Excellence in Palliative Care. Both meetings are being conducted simultaneously at the Anaheim Marriott Hotel. Byock is director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and a professor at Dartmouth's Geisel School of Medicine in Hanover, N.H. He has written numerous articles and books about improving the quality of death and dying, including last year's acclaimed, The Best Care Possible: A Physician's Quest to Transform Care through the End of Life.

Death's paradox
His Anaheim presentation, "Ways to Advance Excellence in Palliative Care," will address America's failure to help the sick "die well." And like his books, it will feature revealing, real-life accounts of dying.

"I think we have a true public health crisis that surrounds the way we die in America despite all of the advances we have made in hospices and palliative medicine," Byock said. "Americans in general still die badly. And it's unintentional. It's inadvertent. It's also undeniable. We all are unknowingly conspiring to make dying much harder than it needs to be. And CHA and its members have an important role to play in not just improving care but really dramatically improving it."

Byock came to recognize this crisis early in his practice some 35 years ago. He would greet dying patients with the standard, "How are you?" Some would answer, "'Well,'" not because that's the polite response, but because they truly were. It confounded Byock.

"The first few times I heard that I thought it was the morphine or euphoria from the steroids," said Byock. "But after a while I began to realize that when we managed the medical stuff and treated them in a way that met their basic needs and honored their inherent dignity, there was a capacity to be well. I started to take that seriously. I became deeply curious about why some people's suffering I could only partially touch and others would tell me they felt well. What fascinated me most was this notion of suffering on one hand and well-being on the other and how I would see them in the same person."

Dying well
Byock's first book, Dying Well: Peace and Possibilities at the End of Life, published in 1997, addressed that apparent contradiction. Byock explains that we are more than our bodies. We possess social, emotional and spiritual dimensions as well.

"I chose the phrase 'dying well' because when you first hear the word 'well,' you think of it as an adverb modifying the process of — the experience of — dying. And it certainly is and can be," said Byock. "But it also is an adjective describing the person that is dying. The question posed by the title is, 'Can a person be well during the time we would consider them to be dying?' And in my experience the answer is, 'Certainly they can.' I think so many people in the general culture think it's impossible to be well within one's self as one is dying. And sometimes we think if we acknowledge someone as well in their dying then we are somehow diminishing that they may be suffering or are incredibly sad or that their situation is not tragic. In fact, both things can be true at once."

Byock looks at dying through the lens of human development. It is the toughest crisis any of us will ever confront, but it also provides an opportunity for growth.

"Throughout life we grow through crises or they crush us — the toddler going to preschool, the young person leaving home to losing your job in midlife," said Byock. "This period of time we call dying is a predictable part of the human life cycle that can be confronted. Recognizing it as such really provides us with stuff to do to help people through this."

Essential steps
The first step is getting patients the appropriate support early. More people receive hospice care today, but for shorter periods of time than could be beneficial, Byock said. "The old saw in our field has become: it's always too soon until it's too late." He recommends offering patients the option of having team-based palliative care soon after they are diagnosed with a terminal illness or chronic, progressive disease.

"I think palliative care — team-based care — ought to be available whenever it's apparent they are dealing with issues that have to do with both quality of life and length of life," said Byock.

Byock also talks to his patients about tackling "the tasks of completion," mundane chores like writing a will and sharing passwords, as well as more difficult challenges such as making peace with estranged relatives.

Many doctors don't consider it their duty to initiate these conversations and medical school certainly offers no training or guidance in this area, he said.

The medicalization of death and the related pressure to extend life, not only from desperate family members but from a health care industry as well, compounds the challenge of providing the kind of death the overwhelming majority of people say they want: a death in their homes, surrounded by people who love them.

"Big pharma, the durable medical equipment people, the transplant folks — we've got this enormous quiver full of arrows to fight disease. The way the economics line up, there is no limit to what we can provide. I love saving lives but while we celebrate the prowess of modern medicine we do need to acknowledge we have yet to make even one person immortal."

Inherent human dignity
Byock is gratified that more caregivers have entered the palliative care field. But for every step forward, the movement has suffered a setback whether it's the "death panel" debate or, equally distressing to Byock, the right-to-die by assisted suicide movement. Byock bristles at the idea that people need to die to regain their dignity. "They already are dignified," he said.

More than 2.5 million Americans died last year, a number that will grow annually as a function of an aging population.

He writes that in order to avoid a "generation-long social catastrophe," society must stop dodging the hard issues and act "wisely, courageously and decisively" to provide the compassionate care and support that contribute to better deaths.

"We don't have another 20 years. The demographics are going to overwhelm us pretty soon," Byock said.

Copyright © 2013 by the Catholic Health Association of the United States
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