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For the week of November 8 through 14, 2000

Sharing the ultimate intimacy

November is National Hospice Month

Express Staff Writer

In talking with Carolyn Nystrom about hospice, one soon understands that the great work of hospice is bringing community to what is the most alienating of experiences -- dying.

"Hospice makes this journey less lonely," says the executive director of the Hospice of the Wood River Valley.

Although the hospice, which serves all of Blaine County, has only one full-time and two part-time staff members, it has about 40 volunteers. The hospice network also extends to hospitals, churches, law offices and families and friends.

"Ours is truly a community organization supporting itself solely through contributions and the dedication of volunteers," Nystrom said.

Dr. P. Scott McLean, who serves as a member of the hospice’s Professional Advisory Board, said a team effort is needed by the medical community to care for the terminally ill.

"Hospice allows daily feedback from the desperately ill about their pain, about their sleep, and other issues. We in the medical community don’t have to guess about these things. Hospice will tell us what the patient needs," he said.

Hospice activities are guided by what Nystrom calls the key question to the dying person: "Now that you have a limited life expectancy, what’s important to you?"

The answer to that question comes in as many forms as there are individuals. The challenge for the hospice is to have a flexible community of professionals and volunteers to grant the dying’s wish.

Nystrom refused to give examples from her experience in the county because "dying is an extremely private matter." In a place as small in population as Blaine County, she said, it would be impossible for her to keep this trust, no matter how she tried to disguise one of her patients.

But the hospice’s library has a number of books that tell stories of dying wishes.

One woman’s father wanted to be certain his favorite quilt was on his bed.

Another woman’s mother wanted to be able to use the toilet instead of diapers or a bed pan.

Simple things as these reflect two of the general concerns of the dying: comfort and dignity.

The daughter was certain her father was more comfortable in dying because the quilt was near even though he was heavily sedated.

The mother’s daughter described how high her mother held her head on her bathroom trips. Such a common everyday necessity turned into such an act of defiance nearly reduced the daughter to tears.

But as simple as such wishes are, many of us are unprepared to grant them, much less ask the question.

Hospice workers will ask the question, and help family members understand how to grant the last wishes of the dying.

Some of these the family can grant; others, like pain management, need the intervention of professionals. Nystrom said hospice workers are highly trained in that area, and make sure the patient is free of pain without a loss of control that can come from being heavily sedated.

The training is especially important because pain management is particular to an individual. Some people’s pain can be managed without drugs. Those who need drugs need them in different dosages and combinations.

But no matter the type of illness, hospice workers have learned the terminally ill can maintain a level of activity and participation in life, free of pain, with little sedation effect.

Pain management is only part of one component of hospice work--providing comfort for the dying. The other components are enabling self-determination, enabling a safe environment and facilitating grieving.

Nystrom made it clear those components of hospice care are not for the dying alone but for the family as well.

The patient and the family are part of the hospice team or community as much as the hospice workers, physicians, nurses and volunteers are.

The critical difference between them is that the care is driven and guided by the desires of the patient and his or her family.

For some, the word "care" may seem an odd choice here since it is heavily associated with the return or maintenance of life. But Nystrom is clear: Hospice care is not a cure, although hospice workers do not discount the chance of cure.

"When a cure is no longer an option, hospice is there to insure comfort and quality of life," she said.

Asked what quality of life means, she said hospice encourages and supports life and independence of the patient "no matter how long that life may be."

Dr. McLean said the volunteer status of the hospice helps provide this quality of life care.

"Because it is not run as a business, it doesn’t have to deal with Medicare or any insurance restrictions. Hospice can tailor the care for patients."

The availability of hospice care in Blaine County makes it one of the best places in the world to die.

A patient can be completely destitute and without family and still receive the highest quality of care.

"Virtually no one dies here without hospice," said Ny-strom.

The national average for hospice care is 20 percent. In Blaine County, it is 97 percent.

Even though seven out of 10 Americans want to die at home, only one in four do. In Blaine County, seven out of 10 get their wish.

Nationally, the average length of hospice care is two to three weeks. In Blaine County, it is 96 days.

Nystrom realizes dying is not the reason people come here, but dying is a part of living.

"People come here (or stay here) for the quality of life this area affords. We’re lucky we can expect this same quality of life at the end of our lives."


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