Hawai'i end-of-life program wins grant

By Beverly Creamer
Advertiser Staff Writer

As she lives with lupus, Rachael Wong has re-evaluated her life to include living each moment and planning for a meaningful death. Jeff Widener • The Honolulu Advertiser

"That has always been part of our consciousness — end-of-life possibilities," said the former Princeton student who suffers a painful, debilitating form of lupus that has already brought her close to death.

She and husband Dr. Brad Chun have been fighting the disease ever since they met as students and fell in love.

The advanced directive she keeps in each of her medical files is both a comfort and an acceptance that she will still be in control in spirit, even if one day she loses control of her physical body.

"What is really important to me is that I die well, whether it's many years in the future or tomorrow," she says gently. "That I've had time to say good-bye to everyone around me and to let them know I love them."

Three years ago, Wong was one of the leaders of a newly formed coalition of 265 groups that grew out of the governor's blue-ribbon panel on death and dying. Called Kokua Mau ("Continuous Care,"), its hope was to create a statewide zone of comfort to talk about end-of-life issues.

Last week, Kokua Mau won a $20,000 award from Harvard's Innovations in American Government program, thrusting Hawai'i into a national leadership position.

"As a community we're becoming a little more comfortable talking about end-of-life issues," said Ken Zeri, director of clinical operations and corporate compliance office for Hospice Hawaii.

In the past three years Hawai'i has enacted legislation that would:

• Allow advanced healthcare directives that state an individual's wishes in terms of organ donation or withdrawal of life support.
• The Hospice Reimbursement Act for coverage in hospice units.
• The Uniform Healthcare Decisions Act which updates the living will and durable power of attorney legislation to legalize the choices of individuals if they become incapacitated.

With the bulge of the population inching toward old age, Hawai'i sees 7,500 deaths every year, with 1,500 of those people seeking some kind of hospice care.

Of those dying in Hawai'i each year, 80 percent are older than 60.

"Most of us would like to go in our sleep or suddenly in some neat and tidy way," said Joanna Crocker, coordinator of Kokua Mau based in the executive office of aging. "But that's only about 10 percent of people. The other 90 percent go through a much longer process."