The Rise of Palliative Care:
Helping Body and Spirit

By Karen M. Stensrud

As worsening emphysema makes it more difficult for him to breathe, Loren Schap wishes simply that he could "go to bed and just sleep and go that way." It makes Loren's wife, Frieda, uncomfortable when he says he wants to die. But both agree they've said what needs to be said -- to each other, and to their three children and grandchildren.

"I know he'll leave someday," Frieda says. "There's nothing you can do about it. People tell me it's a good thing I've got good willpower -- but you can't just sit around and cry and mope."

The elderly Fargo couple walks that fine line between acceptance and fear, wanting to stop suffering and not wanting to say good-bye.

"At night, I get up and watch him move," says Frieda. "When I can't see him breathe, that's when I get scared."

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Ask physicians what kind of specific medical school training they received in dealing with end-of-life care, and chances are the response will be, "almost none."

That was the case for Dr. Preston Steen -- even though he pursued oncology, a specialty in which physicians must often face the death of patients from cancer.

"I remember one medical school lecture that dealt with death and dying," says Steen, an oncologist at the Roger Maris Cancer Center-MeritCare in Fargo. "And there was nothing about pain management other than pharmacology."

Today that's changing, as caregivers have learned to better ease pain and discomfort (providing what in medical terms is called "palliative care") at the end of life.

"Previously, providers did not recognize the need, and patients were sometimes reluctant to admit they were in pain," Steen adds. "Now more physicians take an active role in asking patients if they have pain, and managing it."

Undertreatment of pain historically resulted not only from physician inaction, but also from misconceptions about the potential for addiction. Those fears are unfounded, says Steen, pointing out that the incidence of narcotics addiction is less than 1 percent in patients suffering from pain.

Nevertheless, Howard Anderson, executive director of the North Dakota State Board of Pharmacy, has found that the stigma of the addictive potential of narcotic drugs sometimes dies hard.

"I'm finding that physicians are more skeptical of using narcotics than I thought they would be," he says. "We still need to educate on that issue."

One major teaching effort is the Education for Physicians on End-of-life Care (EPEC) training program developed by the American Medical Association. Steen, the only physician in North Dakota board certified in hospice and palliative medicine, is a strong advocate of EPEC, which covers pain management, social and spiritual aspects of care, and other end-of-life issues such as advance directives (legal documents outlining one's wishes for end-of-life care).

Steen hopes expanded EPEC statewide training, as well as other educational efforts, may help bring pain education into a variety of institutions, including long-term care facilities. Pain management is a major issue in nursing homes, agrees Shelly Peterson, president of the North Dakota Long Term Care Association. In fact, a project being conducted by the North Dakota Health Care Review and North Dakota nursing homes is designed to improve chronic pain management, encompassing end-of-life pain as well. The project, approved by the federal Health Care Finance Administration (HCFA), is the only one of its kind in the nation.

"A lot of states are going to be looking to that project for research findings and protocols for improvement," says Peterson. "Everybody recognizes that pain greatly affects quality of life. We think we are doing a good job, but we know we can do better."

Those who work with the dying generally agree that better palliative care must include a spiritual element. Steen is saddened by those who die in a "spiritual void," and he observes that their symptoms are often worse than in those who maintain a strong faith.

"These are people who search for that 'silver bullet' that will cure them," he says. "They are so horribly afraid of dying. Compare that to someone with clear beliefs. There is a vast difference in how they do in terms of suffering."

As a physician, Steen says he is comfortable letting patients know he is "spiritual" as well.

"I'm willing to talk about that, but I'm not the best person to do it," he emphasizes. "We involve the chaplain, or the patient's own clergy to do that. I do want my patients to know that's an important part of care."

Unfortunately, clergy, like physicians, sometimes receive little formal training in end-of-life issues. Lutheran pastors, for example, may -- or may not -- focus a great deal on matters of death and dying during their seminary courses, depending on their curriculum choices. Seminarians do complete at least one "clinical pastoral education" unit, based in a hospital or nursing home.

"But the reality is that until you're dropped in your first parish, you don't understand completely," says Jeff Sandgren, senior pastor at Olivet Lutheran Church in Fargo. "That's when you walk through the process: anticipation of a death, the reality of the loss, finding out that grief does not work on a nice, neat timetable."

The task performed by clergy is one that "no one else in the equation" -- physicians, nurses or other caregivers -- is specifically called to do, says Sandgren, although he adds that "some of them do it very well."

"Clergy is gifted with the privilege of entering in on holy ground," the pastor says. "Clergy must be there to say that God is present in this."

Sandgren says he has seen palliative care -- combining both physical and spiritual elements -- offer strength to the dying. For oncologist Steen, that blend, focused on controlling symptoms and managing pain, is part of how he would define "a good death."

"When the patient is as comfortable as they can be, when there is good closure with family and there is good spiritual closure," he says, "they're not afraid of dying and what will come to them after death. If we're able to accomplish that … there are few regrets left for the living."

Stensrud, a writer and marketing consultant in Fargo, produces communications for the Matters of Life and Death Project in North Dakota.