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Tuesday, March 22, 2005 - Page updated at 12:00 a.m.

Local experts say talk now, before crisis

Seattle Times staff reporters

Life-and-death decisions similar to those thrust on family members in the Terri Schiavo case happen in local hospitals every day.

Patients arrive unconscious with life-threatening injuries or illnesses, or become incapacitated as their conditions worsen. And the vast majority have not made their wishes clear about life-saving treatment.

That leaves incredibly tough decisions — such as whether to turn off a ventilator or start artificial feeding and hydration — in the hands of the patient's family.

Hospitals can play a critical role in guiding families toward a decision.

More than anything, though, the Schiavo case points to the importance of talking about such life-and-death matters before there's a crisis. Ideally, people should have a living will and designate a health-care decision maker, local legal experts say. On the other hand, the Schiavo case also is not an accurate representation of the reality most families face at the hospital.

"The Schiavo case makes it seem like you have to have a lawyer, a judge, an agent and maybe Larry King," says Dr. Anthony Back, an oncologist and University of Washington faculty member who has studied end-of-life issues.

Information


For more information about discussing end-of-life issues with doctors and loved ones, go to www.wsma.org/patients/brochures.html

"Really, what you need to have is some good talks with the person before they're too sick to go there. Then you have to figure out a way to talk to the rest of your family about this question, and what so-and-so would want if she were here."

Schiavo, a 41-year-old Florida woman whose doctors say is in a "persistent vegetative state," never put in writing her wishes about artificial life support.

"If Terry Schiavo had a living will, this would have been decided on what her clear wishes were," says attorney Jacob Menashe, head of elder law for the Washington State Bar Association.

A living will tells a health-care provider when to stop life-sustaining treatment and allow death. A durable power of attorney for medical care gives someone legal authority to make decisions for the patient.

Even when it's too late for talks and legal documents, decisions about a patient's end-of-life care, however heartbreaking, rarely erupt into bitter legal battles, local health providers say.

That's because many hospitals, while bound to follow the law, try to help the patient's community of closest loved ones build consensus.

End-of-life tips


Here are suggestions on measures to take before a medical crisis strikes you or a loved one:

The time to discuss quality of life and what matters most to a person is before something happens.

Decide who will be responsible for making medical decisions for you in the event you are unable to do so. Make sure this person knows this and agrees to honor your wishes. For some people, this may mean appointing someone other than their legal next of kin as a durable power of attorney for health care.

Know and communicate with your decision maker about what level of disability you would be willing to live with. Also, say how long you would be willing to endure medical treatment for a chance of achieving that level. For example, you've experienced a head injury. There is a chance that in 2 to 3 months you may regain some mental and physical function. But the "if" and "how much" are unknown. How long and under what circumstances would you be willing to endure medical treatment for an uncertain outcome?

Most important, put your wishes in writing and provide a copy to your family and your health-care provider. Keep in mind that many of the commercially available forms are general, not specific. Most refer to a "terminal" condition and do not consider quality of life as an important factor. When putting your wishes in writing, use language that is specific to your desires. That should include what you determine to be quality of life.

Source: Darrell Owens, advanced practice nurse and palliative-care specialist, University of Washington at Harborview Medical Center

"At Harborview, we always try to talk to those people important to the patient," says Darrell Owens, advanced-practice nurse and palliative-care specialist.

Owens, for example, leads loved ones through a series of questions: What drives this person's life meaning? What's important to the patient?

The answers help families decide what kind of care the patient might want.

State law on "informed consent" in Washington, as in many states including Florida, authorizes certain people in a specified order to consent to health care on behalf of a patient who is not competent.

The list outlined in Washington law starts with the guardian or individual who holds durable power of attorney for health care. Absent that, the order is spouse, adult children, parents and adult brothers and sisters.

At Children's Hospital & Regional Medical Center in Seattle, state law almost never comes into play, says Dr. Ross Hays, director of Pediatric Palliative Care Services. "We don't practice medicine thinking about legal concerns. You practice medicine thinking about the best care for the patient," he says.

Most of the time, agreement on the goals of care is reached. Any conflicts that arise typically are resolved with the support of the staff, he says.

Also, the goals of care can change as the patient becomes more critically ill, Hays says.

"So you have to be very good at establishing a good working relationship with the patient and family and continue to understand you're all working toward the same goals of care."

State law does say that if there is more than one person at the same level in the list — such as two parents — there has to be agreement.

If agreement isn't possible, it could end up in court.

Tacoma lawyer Terry Barnett, an expert on end-of-life issues, says the Schiavo case spotlights the two problems most likely to send a case to court — "mistrust between people who loved her and lack of information about what she would have wanted."

Oncologist Back, co-author of a recent medical-journal article on conflict over end-of-life care, says there's a disconnect between the law and the reality of most people's lives.

"The law doesn't exactly match the reality of dying," he says. Though one person may legally have decision-making power, he says, "for every dying person, there is a whole community around them — intimate friends, family members, acquaintances" who should be respected in the decision-making process.

Virtually every hospital has resources to help members of a patient's "community" reach agreement, he says, including ethics consultants, palliative-care specialists and social workers.

Gale Robinette, spokesman for Franciscan Health System, which operates three Tacoma-area hospitals, says the Schiavo case underlines the importance of "proceeding with great caution" in making decisions about life-sustaining treatment.

At Swedish Medical Center in Seattle, Dee Mann Aust, a social worker and director of patient registration, says health providers always seek agreement from family members, but it's not always easy to get.

The Schiavo case "could happen anywhere — that's the truth," she says.

The case, Mann Aust says, should be a warning to everyone.

Marsha King: 206-464-2232 or mking@seattletimes.com

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com

Copyright © 2005 The Seattle Times Company


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