Hawaii's pioneering efforts to improve care for people at the end of their lives are spreading to other states.
Hawaii leads the way
in end-of-life care
The efforts of several isle agencies
are now helping other
states develop similar care
By Helen Altonn
A manual developed last year by the Executive Office on Aging with information gathered on end-of-life care was sent to all state aging directors, said Director Marilyn Seely.
"They were absolutely amazed by the opportunities they have," Seely said. "They took people to the point of dying and let them go. They didn't know how to help people."
The Los Angeles-based Archstone Foundation provided nearly $100,000 for development of the advocacy guide and resource kit, and recently awarded the Hawaii aging office another $100,000 for the second phase of the project.
Seely said the money will be used to integrate into the aging network what was learned the past year, share that with other states and continue training professionals who serve seniors.
Saying she recently lost her father and an aunt, she said the experience enabled her "to be a better observer as to what's possible and who to call and how to get some help ... and how inadequate the medical system is."
Seely said end-of-life care for the aging has largely been a function of "certain groups of pioneers in nursing, hospice and even the medical profession ... who see patients suffering from lack of good pain management and protocols for handling this group of people.
"We're the first to recognize how deficient we are in helping people through the last of their lives," she said.
The work this year is aimed at getting appropriate care at end of life into professional curricula, Seely said.
"It is given a lot of lip service, but integrating it is not easy," she said.
Jeannette Koijane heads the Archstone-funded project, and Joanna Crocker coordinates Kokua Mau (Hawaiian for "continuous care"), a related project under a Robert Wood Johnson Foundation grant.
Koijane calls her project "Compassionate Conversations" because the intent is to train professionals and encourage families to recognize cues and initiate conversations about dying.
Decisions about an advance directive, living will and health-care power of attorney or agent should be discussed in advance, she said, "not standing around in hospital corridors trying to make decisions in a crisis mode."
"We want people to understand their loved ones don't need to be in pain," Koijane said. "They need to speak up. Often it is a difficult message for people that doctors don't know everything."
She said the Hawaii Office on Aging will work with sister offices on the mainland to integrate its findings on end-of-life care into their work.
"Hawaii is seen as a leader in the country in this area," she said.
Crocker said Kokua Mau, a public-private partnership, provides a forum for people and groups to work on specific issues and needs related to end-of-life care.
For example, she said research in the coalition led to legislation enabling people to indicate on driver's licenses that they have an advance directive for future health care.
About 11 percent of people who got new licenses last year indicated they have an advance directive, she said.
The HMSA Foundation recently started an electronic document bank for advance directives that Hawaii medical facilities can tap into, Crocker said, pointing out that no other state has such a thing.
"It's an example of collaboration and sharing of information that enabled us to build on different things available in our state," she said. "What we hope this will do is that peoples' wishes will be better honored at the end of life."
Hospice partners say people at the end of life should receive as much attention and love as they do when they are born, Crocker said.
"Everyone fusses over a new baby," she said. "It's so exciting. At the end of life, there are wonderful opportunities, as well."
Crocker said she lost seven people in the last year, and what she has learned through Kokua Mau helped her enormously in dealing with "those seven transitions."