Opening Conversations: How We Think (Or Don't Think) About Death

By Karen M. Stensrud

In their Fargo apartment, Loren and Frieda Schap rest on a hot summer afternoon. Loren, 79, sits in a comfortable chair, feet up on an ottoman, eating cherries from a bowl in his lap. He pauses and closes his eyes. The room fills with the hiss of his oxygen machine, the hum of the air conditioner and the purr of the four fans that make Loren feel he can breathe more easily.

They met more than half a century ago, as youthful choir members in Oriska, N.D., and have been married 57 years. Although she's six years older, Frieda knows she's likely to outlive her husband. Loren has emphysema, and is also battling prostate cancer. His lung disease was diagnosed five years ago.

Loren holds up an arm to show how thin he's gotten.

"No muscle left there at all," he says.

Frieda is thinner, too.

"It's from worrying about him," she says.

* * * * *

There's good reason most of us avoid talking about dying, often until death is staring us in the face.

It's scary: the end of life, goodbyes we may not want to say, a mysterious event from which no one can return to tell us what it's like.

"Even as a society, we won't talk about dying," acknowledges Wendy Hournbuckle, hospice coordinator at Jamestown Hospital. "We say people 'pass on,' they 'go to the great beyond' -- but they don't 'die.' "

That kind of cultural denial may make it even more difficult for people to initiate important conversations about end-of-life choices with family members, physicians, clergy and others.

Facing -- and talking -- about the end of life is the focus of a three-year statewide project called "Matters of Life and Death," which has brought together representatives of more than 50 organizations to improve end-of-life care throughout North Dakota. One of the project's main goals is simply to educate and motivate people to talk about and plan for the inevitable.

"It is important for families to talk about what people want," says Hournbuckle. "What are their wishes at the end of life?"

But those important questions often aren't asked until someone is diagnosed with a terminal illness. Families who are more open about the end of life are able to "make good use of the time they have together," says Jack Rydell, director of nursing for Hospice of the Red River Valley, Fargo. Those families reminisce and talk freely about what's important to them. It's a frank discussion that, ideally, would take place even before families face imminent death.

"The biggest gap we find in end-of-life care is that a lot of people do not plan in advance for what their options might be later in life or at the end of life," confirms Linda Wright, director of the Aging Services Division of the North Dakota Department of Human Services. More than two thirds of North Dakotans surveyed worry about placing responsibility on family members at the end of life. Yet they also evade discussion and decision-making, sometimes resulting in the very burdening they wished to avoid. Wright's own mother and mother-in-law, she says, were typical: given information about advance directives, neither acted until she was hospitalized.

"A lot of us don't talk about it or make decisions until later," Wright adds, "and that makes it more difficult for families."

How can the tough questions get asked? Most North Dakotans believe their physician should be involved in such discussions. On the other hand, relatively few North Dakotans surveyed had actually talked with a physician about their wishes for end-of-life care.

"It rests with the primary physician and other caregivers to help make people more comfortable and to educate them on how to talk about it," says Rydell.

Some physicians are less comfortable in holding such discussions -- a problem Matters of Life and Death project leaders hope to remedy by implementing more professional education on the subject.

Being firm about their wishes empowers people to make their own decisions about living and dying. It also helps family members and professionals to respect an individual's wishes for end-of-life care.

Many people are comforted simply by getting answers to the questions they have about death: What will my symptoms be? Will it be scary? Will I be comfortable, or in pain? Will I be alone? Will I be at home?

Tess Frohlich, project coordinator for Matters of Life and Death, believes people are beginning to discuss such questions with family members.

"They know they should be doing that," says Frohlich. "People need to know that it's okay to open that conversation with a professional and say, 'This is what I want.' "

In nursing homes, caregivers discuss advance directives -- legal documents about end-of-life care -- with residents and families as soon as the resident is admitted. But that's an emotional and difficult time. Even though advance directives are reviewed annually, "taking care of it earlier would be better," says Shelly Peterson, president of the North Dakota Long Term Care Association.

Clergy, too, can play an important role in end-of-life discussions and care -- and most would prefer to become involved earlier, according to Jeff Sandgren, senior pastor at Olivet Lutheran Church in Fargo. At their best, Sandgren says, clergy working with dying and their families offer a "non-anxious presence" during a difficult and worrisome time.

When someone's wishes for end-of-life care are known, there can be great growth in the final stages before death -- a time Frohlich calls "sacred moments."

"Sometimes the last weeks of caring for someone you love pull family back together," says Frohlich. "It provides you sacred moments that will last the rest of your life. I know personally that happens."

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