How will I die: Preparing your family, directing your care

Published: Saturday, Feb. 25 2012 1:00 p.m. MST

Jolean Sloan took care of her husband as long as she could but then turned to hospice care when Richard became bedridden. Hospice for Utah has been helping Richard and Jolean since August. Photo taken in their Clinton home on Thursday, Feb. 16, 2012. Richard had Alzheimer's and died peacefully last weekend.

Laura Seitz, Deseret News

The first article in a five-part series.

SALT LAKE CITY — When Richard Sloan first showed signs of confusion, his wife Jolean and their nine adult kids tried to think of excuses that didn't involve the word Alzheimer's. When it became undeniable, their focus shifted to bolstering each other on his final journey. Not once did Jolean consider sending him away.

But one of Alzheimer's challenges — it's a condition fraught with them — is figuring out the whats once communication is gone: What hurts? What's he saying? What does he want? What can I do to make him more comfortable? Richard's communication skills went first, and his grandson, Chandler, now 7, wondered what he'd done to make Grandpa stop talking to him.

Richard died peacefully last weekend. Until that moment, his wife of 53 years was his voice.

Most people will have a period of time when they are unable to make their own decisions about health care. They'll need someone else to do it. First, they need to figure out what they want and pick an agent, then tell that person and others who are near and dear.

"I believe people should have control over their own life, including decisions made at the end of their life," says Sen. Pat Jones, D-Salt Lake City, whose joint resolution encouraging all Utahns to fill out documents containing their end-of-life decisions will be signed by the governor Friday. "It's not just the aging. There are all kinds of stories of people who were younger and had a catastrophic accident or illness. They weren't prepared, and it was left up to family members who try to project what the wishes of the person would be."

This week, the Deseret News and KSL TV are exploring what happens in times of grave illness, with a focus on making decisions about what you want and informing care providers and loved ones. That is a gift for the person making the decisions and others during a stressful time, experts agree.

Susan Roberts, a chaplain at University Hospital, believes death is a sacred time, as important as birth. "We need to embrace it more and talk about it more. Just as much as we are making plans for babies coming into this world, why don't we make plans for people to leave the world?"

Funeral home director Kurt Soffe has had intimate discussions with thousands of families coping with death. Death is easier to accept if we have planned for it, he says.

But patients rarely arrive at the hospital with a prepared document that tells health care workers what kind of care they want or who can speak in their stead, says Dr. Bruce Chamberlain, former medical director of palliative care at University of Utah Hospital. Patients coming in from a facility, like a nursing home, are more apt to have such a document, called an advance health care directive. (Click here to download advance directive forms.)

When doctors ask if a directive has been prepared, "the response is remarkably variable," Chamberlain says. "A lot depends on who they've been talking to about their illness."

Nuts and bolts

An advance directive is a document or witnessed oral statement that names a surrogate to make health care decisions for an adult who cannot do it, says what kind of care is desired under particular circumstances or both. Another form, called a POLST — Physician Order for Life-Sustaining Treatment — is completed with a physician or care team. It's a standing medical order for what should or should not be done and a physician who bases care on the POLST is protected from liability.

Advance planning is not just for terminal situations. Sometimes, a person will survive the condition that for a time, at least, left them unable to discuss and express wishes. That means living with whatever was done.

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