Are We Changing How We Die?

By Karen M. Stensrud

Loren Schap's emphysema came on gradually enough that the diagnosis, he says, was no surprise. So Loren, 79, and his wife, Frieda, 85, had a head start on talking about some of the decisions they needed to make.

Their oldest daughter had already been given durable power of attorney for Loren once he stopped driving.

"She writes checks, signs papers at the bank, knows about all our insurances," Loren says. "(With the diagnosis) we had to make sure everything was in place."

Loren even made sure his funeral was prepaid.

"He did that some time ago," says Frieda, "so I wouldn't have to worry about it. It's a good idea; everybody should do it."

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Often, taking control of the end of life&emdash;or, as TV documentary host Bill Moyers puts it, dying "on our own terms"&emdash;begins with holding important conversations with family and physicians about end-of-life issues. Ideally, more North Dakotans should give thought to the unthinkable much earlier than they usually do&emdash;before facing a terminal diagnosis for themselves or family members.

"The best is to do those steps early," says Dr. Preston Steen, an oncologist at the Roger Maris Cancer Center-MeritCare in Fargo. "That's when you have the clearest perspective. And it doesn't mean you can't change your mind later. You need to say what you want and don't want."

One way to put those wishes in writing is to complete an advance directive, a legal document that outlines choices for end-of-life care. Although basic advance directives do not require an attorney to complete, only an estimated one third of North Dakotans have written advance directives. A committee of the Matters of Life and Death project, designed to improve end-of-life care throughout North Dakota, is closely examining the state's advance directive forms. The group will consider what could be changed to make the forms easier to understand and to encourage more people to include advance directives in their planning. They hope to have recommendations prepared before the next legislative session.

"Nationally, a lot of organizations have devised their own forms," says Sandi Tabor, an attorney and the executive director of the State Bar Association of North Dakota. The abundance of paperwork, she adds, often causes confusion for administrators and caregivers about which forms meet state requirements.

North Dakota's law sets out two advance directive forms, both of which "could be easier to use," says Wendy Hournbuckle, hospice coordinator for Jamestown Hospital.

"I'd like to see this part of the process be more consumer friendly," agrees Tabor, who says the forms could incorporate some flexibility, and may be combined into a single form. Perhaps the advance directive process will eventually include a trigger for education that would help ensure that people not only complete advance directives, but talk with their families and physicians about them.

Improving insurance models to incorporate end-of-life care is another focus of the organizations and institutions involved in the Matters of Life and Death project.

"A big concern is how we can put together a package similar to hospice and have funding to serve every area of the state," explains Linda Wright, director of the Aging Services Division of the North Dakota Department of Human Services. "What resources are available all over the state? Where are the gaps? Can they be filled? Can payment sources be found to provide those resources?"

In communities around the state, the Matters of Life and Death project identified core end-of-life services that North Dakotans believe should be available in all areas. The group plans to explore a "model benefit" in cooperation with Blue Cross and Blue Shield of North Dakota and Medicaid. The two major insurers are committed to taking a careful look at changes in reimbursement for end-of-life services.

"That has not been done anywhere across the country," notes Hournbuckle.

As the Matters of Life and Death project has gotten underway, Hournbuckle says it's exciting to see the open interest in an issue that has often been avoided in the past. Education and communication are key elements in improving access to care and coordination of services across the state.

Matters of Life and Death will host a statewide conference next April in Bismarck focusing on palliative care, pain control, hospice, advance directives, ethics and cultural issues.

"It will be open to anyone who is interested, both public and professionals," says Tess Frohlich, Matters of Life and Death project coordinator. "We want to make it affordable for people to attend."

Matters of Life and Death is also focusing heavily on professional education. Clayton Jensen, M.D., a former interim dean of the University of North Dakota School of Medicine, is working with the state's medical, nursing, pharmacy and other programs to incorporate end-of-life issues into the curriculum.

Last spring, MeritCare Health System in Fargo hosted its first program in Education for Physicians on End-of-life Care (EPEC) training. Designed by the American Medical Association, the program offers end-of-life training for physicians.

"We've also involved nurses, social workers and chaplaincy," says MeritCare's Steen, who adds that the Matters of Life and Death project plans to bring EPEC training to other geographical areas of the state.

"There is a universal need for public education in all areas of death and dying," says the State Bar Association's Sandi Tabor. "Matters of Life and Death has brought together virtually everyone involved in dealing with death and dying. They're all sitting at the table and trying to figure out how to handle these issues.

"But more importantly, they're asking how we can educate the public in everything from advance directives to getting hospice care in a rural area."

As North Dakota's citizens become more aware if end-of-life issues, project leaders hope they'll also be motivated to face those issues and talk about them early.

"They have to be talking about it, asking about it, taking some responsibility for doing the legal steps," says Steen. "You have to say what it is you want done medically and legally. So I hope (change) will come."

Public and professional education hold the key to the project's success, believes Tabor: "If we do nothing else besides educating, we will have accomplished a great goal."

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