Taking Control To "Die Well"

By Karen M. Stensrud

At 85, Frieda Schap spends her days taking care of her husband, Loren, who has emphysema and is on oxygen 24 hours a day. She fills his pill box with medications and helps all she can with nursing care.

Hospice service helps. A nurse visits the Schaps once a week at their Fargo apartment. She bathes Loren, 79, and monitors medications. A home care assistant does vacuuming and other chores. A kindly neighbor helps, too, buying groceries, taking out the garbage, visiting with Loren.

Professionals, neighbors and family allow Loren to be at home, even with a terminal illness. Frieda tries to imagine making it without hospice care, but shakes her head: "I guess I'd be on my own."

Frieda hopes Loren can stay at home, as long as she can manage his care.

"I don't mind taking care of him," she says, "and we have help. If I had to put him in the hospital and something happened to him, I'd feel guilty. Us kids helped take care of our parents. That's just what we did."

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When "On Our Own Terms," Bill Moyers' four-part look at end-of-life issues, airs on public television in September, 2003, viewers may hear some odd-sounding phrases.

"Dying well" and "a good death" are among the words coined to describe what happens when people are able to take control of their own wishes for the end of life. What will the environment be? Will family be present? What measures should be taken to prolong life?

While statistics show that most people in North Dakota would like to die at home, the reality is that most people will die in a hospital or a nursing home.

Long-term care facilities are required to discuss advance directives -- legal documents outlining choices for end-of-life care -- when the resident is admitted. But the timing of that requirement has its downside.

"Admission may be too late (to discuss the resident's own wishes for end-of-life care)," says Shelly Peterson, president of the North Dakota Long Term Care Association. "The resident may have dementia, and then the family has to assume a lot of decision making themselves."

For long-term care facilities, regular care planning conferences offer the greatest opportunity for giving more control to residents (if they are capable) and their families. Family contact is important; yet statistically, only half of nursing home residents have significant family involvement as they face the end of life, according to Peterson. The other half may have family who live out of state, or with whom they have had broken relationships. Sometimes friends, or even families of other residents, step in to provide support.

"If someone is dying, most facilities will go overboard in order to make sure someone is there all the time," Peterson says.

With North Dakota having the highest percentage of any state of people residing in nursing homes, long-term care facilities -- and hospitals as well -- are often the place where end-of-life wishes must be accommodated.

"Good end-of-life care is provided at long-term care and medical facilities," emphasizes Tess Frohlich, project coordinator for Matters of Life and Death, a three-year project designed to improve end-of-life care for all North Dakotans. "Hopefully, we can continue to develop more homelike environments for the terminally ill in those facilities, similar to what's happened with hospital birthing centers. Maybe the system needs to look at how we can make dying at home, or in a more homelike atmosphere, a possibility."

For those who do choose to die at home, hospice care can make it possible. Scattered throughout North Dakota, hospice organizations provide services including nursing, social work, volunteer services, chaplaincy, bereavement care and more. Clinical services and support provided by hospice make it possible for family members to care for their loved ones at home.

"Many families are capable of handling the situation very well on their own," says Jack Rydell, director of nursing for Hospice of the Red River Valley, Fargo. Hospice's goal is to empower the patient's family or caregiver to care for a loved one competently and with confidence. Hospice provides clinical expertise, education, support and the reassurance that a professional is just a phone call away.

But not all areas of North Dakota are served equally by hospice services.

"Access to care is a problem," says Wendy Hournbuckle, hospice coordinator for Jamestown Hospital. "If you look at a map of where the hospice organizations are located, it doesn't look too bad. But it's not really as accessible in all areas. If a nurse has to drive forever, is the quality of care affected?"

Distance and resources are only part of the equation. Often, people are unfamiliar with hospice and may not even know it's an option. Or they may see asking for the service as a loss of independence. In North Dakota, only 15% of the dying choose to receive hospice care; nationally, the figure is 20 to 25 percent.

"People don't access care where it is available," says Hournbuckle. "People may not know about hospice, or about other services such as in-home assistance or Meals on Wheels that could help them remain at home. People either don't know -- or they may not want to ask for help."

To improve access, a Matters of Life and Death subcommittee is considering a package that could provide a variety of services in areas where hospice care is not readily available. Existing services may help communicate resources. The Aging Services Division of the North Dakota Department of Health and Human Services, for example, has an ombudsman who interacts with long-term care residents and patients; Aging Services also offers a toll-free number (1-800-451-8693) for statewide information and referral.

"Through services such as not only hospice, but also meal deliveries, home personal attendants or other arrangements, can we reach people at home?" asks Aging Services director Linda Wright.

Whether at home or in a health care institution, taking charge is important. In that case, respecting people's wishes may be as important as their speaking out about their choices for the end of life.

"A good death depends on the person's view, dying in the environment they choose and with family around them if they choose," states Frohlich. "What a person thinks that should be is different for each individual. What needs to happen is that each person be listened to. Each person needs to plan and decide what their wishes are."

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