Health crisis plans ignored but necessary, expert says

People plan for their kids' college, for a vacation, for retirement and other events, but they do not plan for their treatment in a medical crisis, says Rachael Wong, Kokua Mau executive director.

Preparing for Tough questions Advance health care directive information and free forms can be downloaded from Kokua Mau's Web site, www.kokuamau.org, and from the University of Hawaii Elder Law Program, www.hawaii.edu/uhelp. A "Five Wishes" directive form that addresses a person's medical, personal, emotional and spiritual needs also can be purchased from Kokua Mau for $5 with lifetime electronic storage provided.

"This type of planning is probably more important, yet we don't talk about what we would like when we can't care for ourselves."

Yesterday was National Healthcare Decisions Day 2008, and Kokua Mau and the Hawaii Medical Service Association are stressing the importance of health care planning in a weeklong campaign.

The Hawaii Government Employees Association also has made health care planning a yearlong topic for a community action committee, Wong said.

Kokua Mau, a statewide coalition of agencies and organizations formed in 1999 to improve end-of-life care, is providing speakers for HGEA employee educational meetings, she said.

HMSA and Kokua Mau ("Continuous Care") are encouraging people to fill out a simple form -- an advanced health care directive -- that tells family members and doctors how they want to be treated in a medical emergency.

"It's not just important this week," Wong said. "It is important all the time for people to be thinking about this."

Wong speaks from personal experience. She is a kidney transplant recipient, and her 37-year-old brother-in-law, a Honolulu firefighter, died last year after a 10-month battle with cancer, she said.

He had completed an advance directive, Wong said. "More importantly, he and my sister had discussed the care he wanted, the treatment he wanted, his goals for quality of life."

It is as important to write that down as expressing a wish to be an organ donor, she said. "It's even more important to tell loved ones about your wishes."

Ethics committees in hospitals deal with such issues when a person is in the intensive care unit or on a ventilator and cannot speak for himself, she said.

"Families want to act in their loved one's best interest, but they don't know what the decision would have been," she said.

"When you complete an advance directive, it is really a gift to loved ones so they don't have to make a decision in the hallway."

Melissa Bojorquez, manager of HMSA's Integrated Case Management Services, said these problems are "very much part of our day-to-day life in our unit."

She said the unit's social workers, nurses, care coordinators and support staff are there to assist HMSA members with complex care needs after a catastrophic diagnosis, terminal cancer, brain injury or another emergency.

Seniors are more likely to have advance health care directives than people under age 55, Bojorquez said.

But she noted the controversial Florida case of Terry Schiavo, who suffered brain damage after a heart attack in 1990. Family conflict over her treatment ended in a court battle. She died March 3, 2005, at age 41.

Hawaii has many retirees with children living on the mainland who come here in an emergency not knowing what their parents want in terms of end-of-life care, Bojorquez said.

"People need to make sure they're having a conversation when visiting or if they're managing parents from a distance," she said, especially if there are many siblings.

"When it happens, it's not the time to be arguing about 'he said.' Oftentimes the person's individual needs are forgotten in the midst of a crisis."