I think knowing what you want makes the whole dying process not as scary. A lot of people haven't had any of those discussions. People are on hospice but have no funeral arrangements. —Ruth Zollinger, Hospice for Utah chaplain
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.
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.
It's a different story if Josh has a POLST that says do not resuscitate and his heart stops. The doctor is sure he can start it again and there's a 50/50 chance he will make it home once more, he says. But his son says that's not what Josh wanted. Experts agree there's no legal reason to override the son. It could happen, though, if the doctor believed he was not following the dad's wishes.
Conversations, followed by the action of selecting a surrogate or filling out the right paperwork, makes it much more likely everyone will understand and honor wishes, the family relieved of the task of guessing.
Living wills outdated. If you have a living will from pre-2008, fill out a new form, though, Henry says. The old one is "hard to interpret" and often isn't useful. "We tried to make the new form match more closely actual needs and situations." The old one's not invalid. It just doesn't work in most situations.
When Walter Bussell and his wife Alice did all their paperwork and picked a mausoleum crypt and prepaid for their funerals, they were following a family tradition. His parents, Walter and Dessie, "did this and saved me a lot of problems," says Bussell, who is 85 and on hospice for chronic obstructive pulmonary disease. His daughter Vickie Tereau, herself a mother of four, is partway through her own planning. She's had the conversations about what she'd want if she became gravely ill and couldn't speak for herself.
"There's nothing to do when he dies except call the mortuary. Dad's big request is no necktie" for the viewing, says Tereau, who moved to Utah to help care for him. A year or so ago, he seemed to have given up. He'd stopped taking his medications and wasn't eating right. Now, with his daughter home and hospice helping, he's no longer lonely but says he's "ready" when death decides to call. "Nope, I've got nothing left to get done," says a cheerful Bussell, who spent the bulk of his career at Hill Air Force Base, first as a mechanic and later in personnel. His only worry is someone will forget to call his priest.
"I think knowing what you want makes the whole dying process not as scary," says Hospice for Utah chaplain Ruth Zollinger. "A lot of people haven't had any of those discussions. People are on hospice but have no funeral arrangements."
Americans tend to keep death hidden away, shipping it off to institutions, discussed as little as possible. The best deaths, says Alethea Martinez of Hospice of Utah, "are when family members come and go and experience what death looks like — sitting around telling funny stories, crying with one another."
What Salazar had thought was odd — taking lawn chairs to the gravesite — turned out to be one of her parents' finest gifts to the children they loved so much.
"They got a trust and did an advance directive," she says. "They made funeral plans. We don't have to make those decisions. They picked out their caskets and the LDS temple clothes they'll wear. And they paid for everything." The preparations were begun more than 15 years ago, when they were both in great health.
Salazar recalls the lawn chairs as she sits next to her dad in his room at CareSource, a residential hospice in Salt Lake City where he lives now with advanced prostate cancer. His pain is controlled, his mind clear, his decisions all made. And when he says "all," he means it. They haven't put together the final version of the video that will play at his funeral, but that's virtually all that's left. He's even asked Salazar's son, Kelly, if he'll shave his goatee when he's gone. Melba liked him clean-shaven.
"When you've been part of a good death and see a dignified death, when it is an expected death at the end of a long and successful life, it's easy to view that as almost a triumph," says Dr. Michael Galindo, medical director of palliative care for Intermountain Healthcare and of Intermountain Homecare Hospice. "To see it done well and to see it made comfortable and dignified with lots of loved ones around — it's a very heartwarming thing. When you see a good death you want to extend that to a lot of people. When you see a bad death, when people die with a lot of pain, with a lot of unresolved issues, you want to do things about that."
Editor's Note: Advance directive and end-of-life planning is an important and neglected topic. Families often shy away, and when crisis comes, relatives are left trying to guess what someone would have wanted. This week, Deseret Media Companies has joined a coalition to raise awareness about the issue, in conjunction with passage of SCR2, which asks Utahns to consider making their own decisions, appointing an agent and having those tricky conversations. The Deseret News and KSL TV will be running stories on the subject all week.
Click here to download advance care directive forms that can help you make decisions about the health care you would like to receive.
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