Research examines how we view dying

North Idaho residents want to die in the comfort of their homes but fail to prepare well, if at all, for their final days, the results of a recent survey tell Hospice of North Idaho and Kootenai Medical Center.

Most people who answered the survey don’t want to be a burden at the end of life to family and friends but expect more support from them than from the medical community. They also expect their spouses to stick with them until the end.

“It’s interesting that 98 percent don’t want to be a burden but expect their spouses to be there,” says Paul Weil, Hospice of North Idaho’s executive director. “That shows us we need to support those caregivers. Some still work.”

Hospice and KMC decided last year to survey the community about its views of dying. The hospital and Hospice, which provides services to let people die at home, have collaborated for five years to improve the end of life process. But they’ve worked from a health care angle. They needed the community’s sense of the dying process to expose the holes they weren’t seeing.

They also wanted community information to present to organizations interested in starting a coalition on end-of-life issues. People are living longer with incurable illnesses and the dying process takes longer now than it did 20 years ago. The community could play a larger role in easing those last months of life if it had a better sense of what people want, Weil says.

Idaho doesn’t earn high scores for end-of-life care. A national study, “A Report on Dying in America Today,” sponsored by the Robert Wood Johnson Foundation, judged the country’s end-of-life care as mediocre and gave Idaho a D plus. The study found Idaho needs to use Hospice more, manage pain better and motivate more doctors to add end-of-life care as one of their subspecialties.

A year ago, Hospice and KMC mailed a hefty 44-page survey to 2,900 residents of Kootenai, Shoshone and Benewah counties. Survey recipients were chosen randomly. The survey came from the Life’s End Institute of Missoula.

Only 21 percent – 619 people – responded after two reminders, but Weil is satisfied, considering the length of the survey. People were asked everything from how often they had talked about death and dying during childhood to whether they already had planned their funerals.

Nearly all respondents agreed that dying is an important part of life and that caring for people during their last days is rewarding. Nearly everybody wants peace spiritually and to be with their families before dying and to die at home. Every respondent wants to hear the truth from doctors and stay free from pain.

Those responses didn’t surprise Weil or Carmen Brochu, KMC’s vice president of patient care. Brochu helped start palliative – soothing care – suites and an end-of-life team at KMC five years ago. Some patients choose to die in the homelike suites that include round-the-clock professional care and space for family members to spend the night.

What did surprise the Hospice/KMC committee was respondents’ reluctance to expect support from or talk with their churches as the end of life nears. Only 30 percent answered that they’d want clergy to initiate a conversation about end-of-life issues and 40 percent responded that they’d trust information from clergy about the end of life.

“We didn’t expect that,” Weil says.

His committee also learned from the survey that end-of-life caregivers need to pay more attention to pain management. Eighty-one percent of the respondents expressed a fear of dying in pain and 79 percent don’t understand when to take pain medication. They expressed worries about addiction. Responses showed that people believe they should wait as long as possible before taking pain medication, which is poor pain management, Weil says.

“This is a real opportunity to offer education in the community,” Brochu says. “The hospital could offer education in, maybe, nursing homes. We haven’t included them the way we could.”

The survey also showed that people in North Idaho don’t prepare well for their dying days. Nearly all respondents hadn’t talked with their doctors or clergy about end-of-life care. Two-thirds hadn’t signed a living will or power of attorney for health care. Of the people who had living wills, most were older than 55.

“At Hospice, we ask about those things. But we get them when they’re already terminal,” Weil says. “That’s where a coalition could be beneficial.”

Any group or organization – churches, nursing homes, massage therapists, Aging and Adult Services – that touches people during the dying process is welcome in the coalition. Part of the Hospice/KMC team’s strategy to improve end-of-life care is to involve the community. The survey results should help, Weil says.

Already, Hospice and KMC have agreed to hire a doctor by late spring who specializes in palliative care. The doctor won’t work toward recovery but will help ease the dying process. The doctor will work primarily for Hospice, but KMC will contract for some of his or her hours.

“Such a doctor would help us look at our current end-of-life program, the support services available and educate the staff,” Brochu says. “The doctor would consult with physicians who want input.”

Graduate students at Eastern Washington University are analyzing the survey and will offer the Hospice/KMC committee their suggestions for avenues to pursue this spring. But Weil and Brochu have plenty to work on until then. As they invite the community to participate in end-of-life care, they also want to extend such care beyond the traditional six months.

Medicare covers about six months of Hospice care, so that time segment has become the accepted end-of-life care period. But people last much longer in the incurable stage now. Lesser degrees of comfort care could start earlier if the community would help.

North Carolina and Nebraska offered nearly the same survey statewide to residents. Weil says the Hospice/KMC committee will compare the results and try to learn from end-of-life programs that those states run better than Idaho does.

“When someone is dying, it’s a sacred time,” Weil says. “We want it to be a peaceful and quality experience.”