While most people have an idea of what they want — or don’t want — to happen when they die, few Americans make their wishes known.
Kate Andrews didn’t want to take that chance, and wasn’t afraid to bring up what she wanted in terms of end-of-life care to her four kids while they were together for Easter.
“Oh, I annoyed them with it,” she said. “I went over everything I wanted and put it in writing, because I don’t want them to go through making those difficult decisions later.”
Andrews, a master’s in social work intern at AtlantiCare, is among a third of adults nationwide who have either an advance directive or a living will, according to a 2017 University of Pennsylvania study, prompting health-care professionals to seek to change and improve the ways we think about preparing for end-of-life care.
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Dr. Edward Hamaty, chairman of the Department of Critical Care for AtlantiCare, said too often, patients young and old wind up in critical condition and without any care instructions. It could mean the difference between a comatose person living on a ventilator the rest of their life and someone who has instructed to be let go and donate their organs.
“We’re often faced in the ICU with a patient on a breathing machine, in a coma, unconscious, who is seriously ill with slim recovery,” Hamaty said, “and we have to have the discussion on how far are we going to go and what would the patient want us to do if they were sitting at the table and able to decide themselves.”
Health care and social work professionals spotlight advance care planning this month to coincide with National Health Care Decisions Day, but said they always try to get people 18 and older to put their wishes in writing.
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More than 80 percent of patients with chronic diseases say they want to avoid hospitalization and intensive care when they are dying, according to the Dartmouth Atlas of Health Care, but only one in three adults has those wishes explained, researchers say.
Advance directives and living wills can be done with witnesses, legal or medical professionals.
They dictate how someone would like to be treated at the end of life, especially if unconscious. They can specify a Do Not Resuscitate instruction or whether they want to be put on a ventilator for a certain period before family and care providers should let them die.
Christeen Cornell, AtlantiCare director of advance care management, and Kristy Liekfet, registered nurse in palliative care, said they find either people don’t want to talk about it at all or they have every detail of their end-of-life care planned.
Education plays a big part in getting not only patients to have those conversations with their families, but physicians to have those conversations with their patients while they are healthy, they said.
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Danielle Duarte, service coordinator at the Village at St. Peter’s in Pleasantville, a senior residence, said she brings in county experts to give residents presentations about advance planning and the opportunity to file an advance directive or complete Five Wishes, a type of living will.
“Even if you’re 30 years old and having surgery, you need to have one and you need to have somebody who will honor your wishes,” she said. “Of the Five Wishes I’ve done, nobody is the same. Everybody wants something different.”
Aline Holmes, registered nurse and senior vice president of clinical affairs for the New Jersey Hospital Association, said she recommends advance directives for anyone in good health, especially young people.
As for chronically ill, terminally ill and older residents who are more at risk of suffering fatal health conditions, she recommends the New Jersey POLST form, a legally binding document that secures someone’s end-of-life decisions.
About 26 states use the POLST form, which came to New Jersey in 2012. Holmes said health educators are trying to increase awareness of the form and the other options people have for making sure they get what they want at death.
“If someone comes into the ER at 85 years and frail, and they don’t have an advance directive or family members there, with all the medical technology we have today, we can wind up doing terrible things to keep them alive,” Holmes said. “We need something or someone to tell us how far to go.”