2020-04-29

The setting: A medical conference exploring the use of Asian therapies for cancer.

The cast: Oncologists, cancer researchers, and healers of all descriptions as well as cancer patients and one bald and robed Buddhist chaplain.

The topic under discussion: The seemingly dispassionate manner of some doctors in their dealings with terminal patients.

Amidst murmurs of agreement (cold! uncaring!) from the audience, a medical oncologist rises to express the view from his side of the bedside [red.]. "Patients, even terminal patients, seem to have no tools to help them make sense of death," he muses. "How did I get here?" these patients wonder as they approach death's door. "What does it mean?"

The oncologist's question: Can I really be faulted for not having those answers? And isn't it just a little late to start grappling with spiritual issues of this magnitude with five minutes left on your clock?

Quickly, the sentiment in the room swings in favor of the harried doctor who, true to the tradition of triage, must turn his attention to the lives he can save, even while turning his back on the one he can't. There's no IV feed that delivers to dying patients the meaning of life, adds another doctor in the room. It's what they need and I just don't have it.

Although it's certainly true that some doctors are too busy or too detached to help patients grapple with end-of-life issues, that's not the real problem, concurs panelist Leslie Blackhall, M.D. Rather, our culture simply doesn't seem willing to accept death as an outcome, she says. The prevailing wisdom in modern-day America is that death is what happens to a small group of unfortunate people--no one we know, says Blackhall, who is the medical director of the Center for Geriatrics and Palliative Medicine at the University of Virginia School of Medicine. "Well, I'm sorry but that's a really distorted worldview."

A competing view, equally distorted, is the off-button concept of death, says Blackhall, and it goes something like this: You walk around until you're 90 years old being Herb or Gloria--totally Herb or truly Gloria until, at 90, your off button's pushed and you die. Cancer doesn't allow for that, says Blackhall. Cancer can mean a long, slow decline during which you lose various pieces of your identity, she says.

Some of the big ones: your ability to pursue your profession, your appearance, your hair. Near the end, you can't even get out of bed. And yet you're alive. But who are?

Last year, when journalist Bill Moyers explored end-of-life issues in his PBS program "On Our Own Terms: Moyers on Dying," he came to realize that Americans viewed death as unAmerican.

"We Americans don't like limits, we don't like boundaries. And death is the ultimate boundary," he said in a post-program online chat. "We've also put death at arm's distance," he says. "When I was a kid, people died at home. My grandfather died at home. I saw his body stretched out on the table in the parlor of my grandmother's little house. But then we started sending people off to the hospital to die. They died out of sight, in the care of strangers.... We've just put a distance between us and death."

Palliative Care and Hospice

The bad news first: Over 50% of patients who die in a hospital are in moderate or severe pain in the days before their deaths, says Cynthia Pan, M.D., citing the well-regarded Support Study, which suggests that in many ways, as a patient's remaining days dwindle, so does a hospital's quality of care.

Pan, however, is quick to defend doctors' efforts to work to the best of their abilities. "People go into medicine with the intention to do good," affirms Pan, who is the director of the Edward Hertzberg Palliative Care Institute at the Mount Sinai School of Medicine in New York City. "But some doctors are never taught the adage 'to cure sometimes, to comfort always.'"

That mandate sums up Pan's specialty--and offers a solution to poor quality of life at life's end: Palliative care, while not withholding treatment, looks at the whole patient, including her pain, her suffering, her psychological needs, aiming more to relieve than to cure, she says. Currently, palliative care training is offered in less than 10% of all medical schools in this country, says Pan, who is part of an initiative to make palliative care required course work.

The Rev. Madeline Ko-i Bastis, the first Buddhist in America to be Board-certified as a health-care chaplain, agrees that physicians are better trained to cure than to comfort. Doctors are hardwired to save lives, fighting with every fiber to extract another breath out of their patients--and then another one after that, says Rev. Bastis, who established the Peaceful Dwelling Project in East Hampton, New York, which offers meditation workshops and retreats for people with life-threatening illnesses and their caregivers. Giving into death is precisely what doctors are trained not to do, she says.

During the first nine months of her three-year training to become a chaplain, Rev. Bastis had 73 patients in her ward die--5 over the course of one grueling afternoon. She feels that the hospital accommodations are poorly designed to house the dying. Often terminal patients shared double rooms, she remembers. So the person still alive on one side of the curtain experiences the cries of the dying person and the drama of the life-saving equipment rolled in on the other side.

By contrast, moving dying patients into hospice care--preferably at home, but also in hospital wards, inpatient facilities, and nursing homes--helps patients accept their deaths in an environment where relieving pain, both physical and emotional, is the first goal. In doing so, hospice grants the wish most Americans express for their dying days: that they live their last moments without pain. And it helps makes sense of the losses that come with illness, including the ebbing of a professional life, the failing of the physical body. Sometimes in losing these things, people come closer to their essentials selves. So in a very real way, the more they lose, the more they find, says Rev. Bastis. That's death with dignity.

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