January 25, 2011

USA: With Poem, Broaching the Topic of Death

NEW YORK / The New York Times / Health / January 25, 2011

OUTREACH Gina Nez, right, and Mitzie Begay visited Jimmy Begay (no relation), 87, a “code talker” in World War II, who signed an advance directive on end-of-life care.

FORT DEFIANCE, Ariz. — Mitzie Begay, an elegant 76-year-old Navajo, can interpret the nuances of her language and traditions with contemporary verve and understated wit — qualities that make her a good fit for a job that could hardly have been imagined in the Navajo Nation a generation ago.

Ms. Begay, whose title is cross-cultural coordinator for the home-based care program at the Fort Defiance Indian Hospital here in northeastern Arizona, helps Navajos deal with the complex and confusing process of decision-making at the end of life.

In Navajo culture, talking about death is thought to bring it about, so it is not discussed. A dead person’s name is never spoken. Only designated tribal members are permitted to touch and bury the dead.

So it is up to Ms. Begay and her colleagues to find ways to teach people (many with little or no English) about things like living wills, durable powers of attorney, do-not-resuscitate orders, electroencephalograms, feeding tubes and ventilators. In spite of the taboos, they are trying to find a comfortable way to begin a conversation with patients and their families about death and dying.

Until last month, the program’s director was Dr. Timothy Domer, a geriatrician who practiced medicine for more than 20 years in this remote, high-desert, red-rock landscape on the eastern fringe of the vast Navajo reservation. Its goal, he said, is to keep elderly patients healthy, starting with a thorough physical exam and a comprehensive, interdisciplinary assessment, followed by home visits.

Dr. Domer, who is moving to New York State to practice geriatrics and palliative care, said it soon became clear that when it came to end-of-life matters, his patients had a different perspective from many other Americans.

“When I explained to an old Navajo patient of mine that we sometimes have to shock the heart to get it started, he said, ‘Why would anybody do a crazy thing like that?’ ” he said. “That made me think there were people who didn’t necessarily want the standard resuscitative efforts that we routinely practice at the end of life.”

When Dr. Domer started the home-based care program five years ago, he reviewed hospital records to see how many charts contained advance directives. “There were none — zero,” he said.

For patients who had terminal illnesses, Dr. Domer wanted to be able to provide hospice and palliative care.

“Our goal is not just to change the way people die,” he said, “but to change the way dying people live, and how their families experience and will remember the death.”

On this day Ms. Begay and Gina Nez, the program’s director of nursing, are bumping along in a four-wheel-drive S.U.V. to visit elderly patients in isolated communities. They drive past hogans, the six-sided traditional Navajo dwellings, past herds of cattle and sheep that dot the grass meadows.

“At first I was uncomfortable,” Ms. Begay said about her introduction to end-of-life discussions. “But the staff got together and we talked about it, and we agreed on a way to approach it.”

The vehicle was a poem:

“When that time comes,
when my last breath leaves me,
I choose to die in peace
to meet Shi’ dy’ in” — the creator.

Written in both Navajo and English, it serves to open a discussion about living wills and advance directives.

Fewer than 30 percent of Americans have signed advance directives for health care. But Dr. Domer says almost 90 percent of patients in the program have signed the poem and other standard directives.

“Our elders tell us they want to die with dignity — the way they lived,” he said. “We’ve changed how patients live their final days by opening the discussion on death and dying, and giving patients and families the opportunity to tell us what is important to them.

“Before we started this program, the subject was generally avoided out of ‘cultural sensitivity,’ depriving patients and families of preparing for death spiritually, emotionally and practically.”

When someone dies in the family hogan, for example, a hole is made in the north wall to let the good spirit out, and then the hogan is abandoned.

RESERVATION Health workers visit elderly Navajos
at home in isolated communities.  Photo: Dale Kruzio

“I’ve seen my share of dying patients, particularly elderly patients who spoke only Navajo, whose families brought them to the hospital to die,” Dr. Domer said. “One of the reasons they came to the hospital was that if they died in the hogan, the rest of the family would have to leave, and for poor people that’s a real hardship.”

James S. Taylor, a bioethicist who teaches philosophy at the College of New Jersey, has written about Navajo views of end-of-life care.

“Navajos value the principle of autonomy or self-determination,” he said in a telephone interview. “But their cultural taboos — you can’t think negatively, or it will happen — restrict their ability to autonomously plan for their end-of-life care, since the planning itself requires such negative thinking.

“Using the poem and open-ended questions allows nuanced and respectful solutions to this problem because it gives people the opportunity to discuss end-of-life planning impersonally. It’s a compassionate approach, and it’s in accord with the twin values that Navajos share with mainstream American culture — individual autonomy and personal dignity.”

Ms. Begay and Ms. Nez visit Jimmy Begay (no relation), a bright-eyed man of 87 who lives with his wife in the little community of Sawmill. In World War II, Mr. Begay was one of the Navajo “code talkers” whose radio transmissions were never deciphered by the Japanese; the walls of his modest home are covered with photos, a squadron’s worth of family members who have served in the military.

Mr. Begay has signed the poem and the advance directives, and so has Mitzie Begay.

“Traditionally, it’s our belief to always have a positive attitude,” even when someone is dying, she said. “The family has a five-day sing” — a Navajo ceremony — “drink herbs and paint their bodies. All these things are done for the patient, and then we know we did all we could.

“After a patient dies, you don’t hang on, because the deceased is no longer on Mother Earth. You wash up, take your corn pollen and go on with life.”

© 2011 The New York Times Company