CRAIG T. KOJIMA / CKOJIMA@STARBULLETIN.COM Kenneth Zeri, president of Hospice Hawaii, says end-of-life care should begin months before a person's death, not weeks, as is often the case. Hospice Hawaii was a sponsor of a recent national workshop on how to improve the lives of dying patients.

Planning for a
parent’s final months

People near life’s end should
be asked how they want
to spend it, doctors recommend

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By Helen Altonn
haltonn@starbulletin.com

People should talk with their parents about the care they want toward the end of their life before they really need it.

This is the advice of national and local authorities who deal with issues of dying.

"In Hawaii we recognize we still are seeing people very late in general in hospice care," said Kenneth Zeri, Hospice Hawaii president. "We are seeing them in the last three weeks of life when the program actually is designed for the last several months of life."

The major reason is that people are not talking to family, caregivers or physicians about the kind of care they want in the last few months or even last year of life, Zeri said.

Several hundred physicians, caregivers and other health-care professionals addressed these issues in recent workshops on family practice sponsored by the Hawaii Academy of Family Physicians and lectures sponsored by Hospice Hawaii and Pfizer Pharmaceuticals.

The guest lecturer was Dr. Christina Puchalski, a nationally noted pioneer in the development of medical educational programs in spirituality and health.

Puchalski is assistant professor of medicine and health-care sciences at the George Washington University Medical Center, Washington, D.C., and founder and director of the George Washington Institute for Spirituality and Health.

"The message is, our patients want more than just technical, rapid-fire service," she said in an interview, pointing out that economic pressures are forcing doctors to see patients in less time. "That's just not good medical care.

"We need to work toward a system where physicians can get to know the patient, their spiritual beliefs, their values and how those might help them cope or deal with suffering." Puchalski said physicians are obligated to talk to patients about dying and preferences for treatment, but many feel if they cannot do chemotherapy or some other treatment, "there's nothing left to do -- so why not just hand them over to hospice?

"But really, that's not right. There's plenty to do. Dying is an amazing time of spiritual, emotional and social growth of a person. All those questions people ask need to be supported, and spirituality is about finding meaning in life." It is not that physicians do not want to deal with these issues, said Puchalski. "They need skills. We've developed skills for them around end-of-life care and spiritual history."

Puchalski, whose work has been highlighted on "Good Morning America," "ABC World News Tonight," "NBC Nightly News" and PBS's "Religion and Ethics Newsweekly," said courses on spirituality and health were offered by only two medical schools in 1992. That number has grown to 75 out of 125.

"The most important thing I try to teach people is, everybody wants to be connected in some way; they want to be cared for, and that's what we're trying to do, to deliver compassionate care," she said.

The University of Hawaii John A. Burns School of Medicine does not have a specific course entitled "Spirituality and Health" because of the program's nature, said Dr. Richard Kasuya, director of the Office of Medical Education.

"Most of our study is in small groups of medical students with a faculty member facilitator studying patient cases in a problem-based format," he said. "Within that contact, we have a number of opportunities for students to study and learn about end-of-life care issues, including some aspects related to spirituality in medicine."

This is an important issue for medical students across the country, Kasuya said, and "imperative" for UH students because of Hawaii's unique patient population with different belief systems and religions.

Zeri said end-of-life issues often are not discussed because it is uncomfortable to talk about them.

He believes people with life-threatening or chronic diseases are afraid doctors will give up on them if they talk to them about advance directives and end-of-life care. Doctors also fear patients will think they are giving up on them if they raise the subjects, he said.

But doctors will not give up on patients, he stressed, explaining they want to know about their patients' values and wishes for end-of-life care.

Within families, he said, "A lot of care done is based on the assumption that 'I'm going to do everything for Mom I should do' rather than sit down and say, 'Mom, how do you want to live? Do you want to be in a hospital? Would you rather stay home as much as possible, or what?'

"There's no right answer. It's the answer that's right for the individual person."

Help is available for those who do not know how to broach the subject with loved ones.

Call Hospice Hawaii, 924-9255, or Kokua Mau, the Hawaii coalition to improve end-of-life care, 585-9977 or, toll-free, 800-474-2113, or see info@kokuamau.org.