How will I die: Negotiating death's details

Published: Tuesday, Feb. 28 2012 1:00 p.m. MST

Jack Batt enjoys a visit from his daughter, Kathy Salazar, at CareSource Home Health and Hospice in Salt Lake City on Thursday, Feb. 2, 2012.

Laura Seitz, Deseret News

The fourth article in a five-part series. Read the first, second and third articles: "How will I die: Preparing your family, directing your care," "How will I die: Finding hope in hospice" and "How will I die: A good life, a young death?"

SALT LAKE CITY — Before her death in 2007, Melba Batt and her husband Jack sometimes took their lawn chairs to a cemetery in West Valley City, where they'd sit right besides the headstone that bears their names and dates of birth. She joked that she wanted to check out the view since that's where they'd decided to be buried.

Their daughter thought it was weird at the time. But when her mother developed dementia, Kathy Salazar became grateful that virtually all the decisions had been made, from who would speak for her mom as her own ability to do so waned to what would happen to her body after her death.

No one gets to cheat death, but people do sometimes cheat themselves of more control over how they die. Experts say at least half and maybe as many as 80 percent of people are not able to make their own decisions about care at some point due to grave illness. Often, they've given up any voice because they didn't express their own wishes while they could.

Friday, Gov. Gary Herbert will sign a joint resolution passed by the Utah Legislature encouraging Utahns to fill out documents that outline their health care decisions if they can't express them, says the woman behind the resolution, Sen. Pat Jones, D-Salt Lake City.

It's not enough, though, to just fill out forms to get the best results. It's absolutely vital to talk often about your feelings to your extended family and to the person you select to be your surrogate, says Maureen Henry, executive director of the Utah Commission on Aging. That way, decisions on your behalf come from a place of deep understanding of your wishes.

Being the "surrogate" in end-of-life decision-making is tough, especially if there's any question about what a person would have wanted. Dr. Daniel Sulmasy, an expert in medical ethics at the University of Chicago Divinity School, told Kaiser Health News it is psychologically on par with having your house burn down. In the Journal of the American Medical Association, he wrote that clinicians sometimes ask surrogates to make decisions before they've come to terms with their loved one's situation.

Avoiding confusion

Without adequate conversation and clear direction, some confusion can threaten the execution of a person's healthcare wishes. Henry offers hypothetical examples:

Marjorie and the doctor are at odds over her mother's care. The doctor says he wants to send her home without a pacemaker because that was her request. She won't survive it, though. Marjorie has talked at length to her mom and thinks it's a misunderstanding. She believes her mother meant to decline an automatic defibrillator, not a pacemaker. They ask and it turns out she was right. Her mom gets a pacemaker.

Tori is adamant that she doesn't want to be in the intensive care unit and she does not want a ventilator. When she loses consciousness, her daughter demands the doctors place a ventilator. But Tori has given the doctor precise instructions, which the doctor follows. Her obligation is to Tori's wishes.

Michael is brought in with a form called a Physician Order for Life Sustaining Treatment, or POLST, that says do not attempt resuscitation. But his daughter says he filled it out when he thought he had terminal cancer and they just found out he is not, in fact, terminal. "Please keep him alive," she says. Experts agree there is enough reason for doctors not to blindly follow the POLST.

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