For many, death can be a difficult and taboo subject.
But health care professionals say avoiding the topic can leave physicians, family members and loved ones with little direction when making health care decisions for patients who are terminally ill and unable to make decisions for themselves.
People who are dying often want to spend their last days at home with family and continue to make decisions on the care they receive. But they commonly find themselves in a hospital bed with little input on how they'll spend their final days.
A bill by state Rep. Bruce Weyhrauch, a Juneau Republican, would implement the "five wishes" approach to end-of-life care.
The five wishes are:
Who will make health care decisions for you.
The kind of medical treatment you want or don't want.
How comfortable you want to be.
How you want people to treat you.
What you want your loved ones to know.
Alaska is one of 15 states that does not incorporate the five wishes approach in law.
"One of the necessary parts of life is death and we shouldn't ignore it," Weyhrauch said.
House Bill 25, the Health Care Decisions Act, incorporates provisions of end-of-life care such as advance health care directives, mental health treatment, do-not-resuscitate orders, organ donation, and durable power-of-attorney laws into one place in state statutes.
It establishes a comprehensive form that allows people to decide who will make decisions on their behalf, and to give specific instructions on medical decisions regarding pain-relief medication, withdrawal of treatment, and artificial nutrition and hydration.
The optional form, however, includes more than medical issues. It also encourages people to make specific personal care decisions such as whether they will be in a hospital and who they want near them during their final days.
The law also would give people the option of writing their own directives in their own way without using a state form.
The Health Care Decisions Act also authorizes a surrogate decision-maker to be chosen if a comatose patient has not signed a living will or power of attorney. Under that scenario, decision-making duties would be given in order of priority to a people such as a spouse, adult child, parent, adult sibling or an adult who has shown special care and concern for the patient.
Dr. Maria Wallington, a medical ethicist for Providence Health System in Alaska, has testified before the Legislature in favor of the bill, noting that current living-will and power-of-attorney statutes are "limited and confusing, and can, in fact, discourage people from making a living will."
She said a very small segment of the population has a living will or advance health care directive.
"I would be surprised if we had 15 percent of the population with a living will," she said.
The living-will form now provided by the state addresses only whether to prolong the dying process, she said, noting more direction often is needed for patients who are not dying but are unable to communicate their wishes.
Weyhrauch's bill also would help patients who may not be dying give more detailed direction to health care providers, Wallington said.
"You don't have to be at death's door when it kicks in," she said.
Though Weyhrauch's bill passed the state House of Representatives last session, it still awaits approval from the state Senate and Gov. Frank Murkowski.
Sioux Plummer, chairman of the Juneau End of Life Task Force, said the idea for a similar bill sponsored by Weyhrauch's predecessor, Rep. Bill Hudson, came after a public-television series by Bill Moyers on end-of-life issues was broadcast in 2000.
Hudson's bill was filed in 2001 and passed the House a year later, but stalled and eventually died in the Senate.
"Those who have indicated some opposition to this legislation have misunderstood it and misinterpreted it grossly to lead others to believe that it has something to do with euthanasia or right-to-life," Plummer said. "And nowhere in any of the language does it suggest that."
She said the thrust of the bill is giving dignity to people who are dying.
"A person needs to know that it's legally OK to say, 'I really don't want to have chemotherapy' or 'I really don't want to pursue other medical treatments any longer,' " she said. " 'I want to die in comfort. I want somebody to give me a massage every day. I want to have candles lit. I want to have loved ones around me or I don't.' "
Weyhrauch's bill now awaits a hearing in the Senate Health, Education and Social Services Committee, which is headed by Eagle River Republican Rep. Fred Dyson.
Dyson, while serving in the House, voted in favor of Hudson's version of the bill in 2001.
"I think (Weyhrauch's) done some marvelous work," Dyson said. "But we've got to be careful about who gets the authority to pull the pin."
Dyson said he anticipates minor changes to the bill, such as a provision requiring comatose pregnant women to carry their child to term before proceeding with a do-not-resuscitate order.
Dyson said he will work with Weyhrauch on any changes to the bill next session.
Timothy Inklebarger can be reached at email@example.com.
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