Group wins award for work with dying

BOISE – Just two years after Idaho received a dismally low ranking on the care it provides for dying patients, an Idaho group has won a national award for working to change that.

The group, called “A Better Way Coalition: Life on our own terms,” is among several organizations and efforts in the state that many say are increasing awareness of the need for palliative care, or care aimed at ensuring the comfort of a dying person.

“Our focus for so many years was on the cure or curing, and very little attention was paid to comfort,” said Cindy Reed, director of clinical services for the Hospice of North Idaho. “And yet, the outcome ends up being the same.”

The Boise-based, statewide Better Way Coalition was one of five groups across the country recognized on Monday with a $15,000 prize for its work. The groups were honored by Rallying Points, an initiative of the Robert Wood Johnson Foundation.

“A Better Way Coalition is working hard to inspire systemic change in Idaho,” said Cheryl Simpson-Whitaker, a Boise social worker and director of the all-volunteer coalition. “National recognition for our emerging Idaho coalition provides credibility to our efforts and will make it possible for us to expand our work. We are ready. We are willing. We are able.”

Already, the group has worked with lawmakers and the Idaho attorney general’s office to add more choices to Idaho laws that govern living wills and do-not-resuscitate orders. It is working with local coalitions around the state, including the North Idaho End of Life Community Coalition.

Simpson-Whitaker said the group plans to use the prize to set up a Web site to inform people in Idaho about how to effectively communicate their wishes for end-of-life care. The group also has worked on end-of-life training for health care professionals and others, as well as public awareness. It plans to publish a white paper in December entitled “Advance Care Planning in Idaho: The Right Choice at the Right Time.”

In 2002, a national study also sponsored by the Robert Wood Johnson Foundation ranked states on their end-of-life care, using a variety of criteria. Idaho scored a D+, based in part on pain-management problems, state laws and low use of hospice programs. The study found that most Americans wish they could die at home, but most don’t – instead, they die in hospitals or nursing homes. Hospice care allows patients to die at home or with family with assistance from trained nurses, social workers, therapists and others.

Patty Bullick, a social worker with Hospice of North Idaho who teaches a class on death and dying at North Idaho College, said, “The biggest change in the last two years is awareness. … More and more hospitals are creating palliative care teams. And these coalitions are helping bring awareness to communities about how important it is to have specialists at the end of life.”

Bullick said her class, which is aimed at nursing students and others with an interest in end-of-life care, now is offered in both the fall and spring, rather than just in the spring. “There’s been more demand,” she said.

Mike Regan, spokesman for Kootenai Medical Center, said the hospital now has four “Circle of Life rooms” for dying patients who choose to forego heroic lifesaving efforts at the end, with two added just in the past year.

“The technical terminology would have been palliative care suites,” Regan said. “They have been well used.”

The rooms are comfortably furnished, and larger than a regular hospital room to accommodate friends and family. Regan said they allow a dying patient to bring in pictures or other items that are meaningful to them, “so they could bring a little bit of their home into there and the nursing staff would accommodate it.”

Bullick said, “People are so relieved when they find out there is something like that.”

Hospice of North Idaho serves Kootenai, Benewah and Shoshone counties, and is the state’s largest hospice. Its patient admission numbers have been growing at a rate of about 25 percent a year for the past two years, said Executive Director Paul Weil.

Various hospices and other groups around the state are working to bring attention to end-of-life issues, including Bonner Community Hospice in Sandpoint and others.

Reed said hospice care may not be for everyone. Some people may choose to have high-tech lifesaving efforts continue right up to the very end. But she said what everyone needs is good information, and to “be allowed to make really good choices.”

Then, she said, “At least it’s their life, they’re in charge. They’ve had all the information they can possibly get and they and their closest family are making their own decisions, and not just going with the flow.”

She added, “I can tell you the best lives and the best deaths are usually those patients that have families that support them, where everybody is kind of on the same page. It might not be the same care I would choose, but for them it was perfect.”

In the spring, KMC, the Hospice of North Idaho and others cooperated on an extensive community survey to determine the area’s wants and needs when it comes to end-of-life care. “It was kind of a group effort,” Reed said.

The hospital also is planning to bring on a board-certified palliative care physician. “That’s a really big step for this area,” Reed said.

Bullick said Idaho faces challenges ranging from some physicians’ reluctance to prescribe pain medication to care-giving issues that impact families. “People have to really change their life, quit their jobs or go on sabbatical in order to take care of a dying patient,” she said. “Or they have to put them in a nursing home.”

Simpson-Whitaker said Idaho has “come a long way.” She said her group believes “the most effective way to move from a death-denying to a life-affirming culture is to promote professional development and community awareness at the state and local level.”

Reed said, “When I first started 18 years ago, some people didn’t feel we (Hospice) were mainstream medicine – some physicians felt we were one step above voodoo. The (increasing) knowledge that there’s value in providing good palliative care to someone who is dying is really exciting.”