Young working to help people die with grace

Juneau Color

Posted: Friday, October 06, 2000

While most of us think about death only when a loved one is injured or ailing, death constantly whispers in Jan Young's ear.

Young, a registered nurse, is the director of Hospice & Home Care of Juneau. Hospice provides in-home care for the terminally ill and a year of bereavement follow-up for family members and caregivers. Hospice cares for 130 to 150 patients a year, clients whose life expectancy is six months or less.

At first, Young was one of the in-home nurses, becoming director just two years ago.

"In the field, I got a really good feeling from teaching people to take care of themselves whether it was adjusting to a new illness or dying. But as I got into supervisory positions, the rewards were helping other nurses grow and watching the role of hospice grow in the community over 10 years," she said.

Young worked as an oncology nurse for 13 years in Fairbanks.

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"In nursing school, you get next to nothing about death and dying. What I learned (being a nurse) is that medicine is wonderful. We have made great strides. But when medicine is not working the way patients want it to, you need to offer options, and one option is to have a better quality of life," Young said.

Nurses and doctors are trained "to cure and take care of, so you have to have a whole different mind-set to let the patient decide what he wants," she said.

When patients are given a short time to live, "We encourage them to look way ahead, to make advance directives, to make sure their relatives and family and friends will know what you want," Young said.

Basic documents including a living will and a power of attorney completed and stored where they can easily be found.

Supplemental documents include Five Wishes, a document accepted as legal in 33 states and the District of Columbia. It gets right down to the uncomfortable nitty gritty of what CDs should be played when you're in a coma, whether you want your hand held even if you don't respond, and if you want respirators to breathe for you.

Do you want to be fed intravenously when you can no longer swallow? Confronting such hard questions is no picnic. However, confronting such questions before actual emergencies arise allows people to surrender to the dying process, to gain peace and serenity. It allows relatives to be sure they are following a loved one's wishes.

"I thought I knew what I wanted, but these questions really made me think. These are tough to answer when you're sitting here healthy," Young said.

After a fatal diagnosis is issued, "often the family is protecting the patient and the patient is protecting the family (from reality). When they can really sit down and talk about it, it's wonderful. Unresolved stuff is resolved," she said.

Born in Maine and educated in Massachusetts, Young moved to Juneau in 1990 when her husband, Greg, a state employee, was transferred. Her two grown children and two step-children live in Colorado, Michigan and Japan. She and her son Michael hiked the Chilkoot Trail last summer to mark his college graduation.

"It was a real special way to celebrate together and challenge ourselves at the same time," she said. Hiking helps her reduce stress that builds at the office. "I do my best thinking out there; you need something that lets your mind free," she said.

Two weeks ago, Young attended a Perseverance Theatre performance of the Pulitzer Prize-winning play "Wit" by Margaret Edson, a drama about a college literature professor dying of cancer after devoting her life to scholarship and teaching at the expense of personal relationships.

"It was a touching story, and Perseverance did some consulting (with medical personnel) locally to see that things were accurate. But no one wants to die in a research hospital," Young said of the play's main character, Vivian Bearing, Ph.D. "That's what Hospice is trying to avoid. There's a better way to end your life."

Young says her job has been made easier by a recent series by Bill Moyers on national public television about dying with dignity and by associated Alaska television productions on the subject.

"Moyers has been a wonderful boon to the message we get out about Hospice; it's been great," Young said. "People are more willing to talk about something when a national personality brings it up.

"I hope the Juneau community keeps the momentum going that happened with Bill Moyers and the local town meeting. These end-of-life issues are universal to everyone," Young said.

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