At the end of their lives, most people want peace, as little pain as possible, and some control over how they die, a new research review finds.
Researchers said the study gives some sense of how people typically define a “good death.”
For those facing a terminal illness, it seems that what matters most is control over the dying process — being home rather than in hospital, for instance — being pain-free, and having their emotional and spiritual needs met.
And for their families, the hopes are largely the same, according to the review of an international array of studies on “successful dying.”
The findings were published March 30 in the American Journal of Geriatric Psychiatry.
Yet, experts said, when it comes to caring for terminally ill patients, doctors often focus the discussion on treatments — which ones are wanted, which ones are not.
“That’s important, but we have to go way beyond that,” said Dr. Dilip Jeste, the senior researcher on the study and director of the Stein Institute for Research on Aging at the University of California San Diego School of Medicine.
“The take-home, to me, is that we really need to talk to patients about the dying process,” Jeste said.
Often, he noted, the subject is seen as “taboo,” by doctors, family members and even patients themselves.
“Even if patients want to talk about it,” Jeste said, “they may be afraid to bring it up with their families, because they don’t want to upset them.”
Because of that, Jeste said, he’s found that patients often “feel relieved” when their health providers broach the subject.
It’s true that “advance care planning” for people with serious illnesses often focuses on treatments, agreed Dr. R. Sean Morrison, who directs the Herzberg Palliative Care Institute at Mount Sinai Icahn School of Medicine, in New York City.
So a patient, for instance, will make decisions about whether he wants doctors to try to prolong his life by using a mechanical ventilator when he can’t breathe on his own, or feeding tube when he can’t eat.
“What this study tells us is, that’s not actually what’s most important to patients and families,” said Morrison, who was not involved in the research.
Instead, he said, they care more about what the remainder of their life will look like — and not just the final days.
According to Morrison, end-of-life discussions — whether they’re between patients and doctors, or among family members — should focus on a person’s values.
“Who are you as person? What’s truly important to you? How do you define a good quality of life?” Morrison said. “If someone says spirituality or religion is important to them, for instance, I better make sure a chaplain is involved at some point.”
For the review, Jeste’s team pulled together 36 international studies looking at patients’, families’ and healthcare providers’ views on “successful” dying. Patients ranged in age, but were elderly on average; most often, they had advanced cancer, heart failure, lung disease or AIDS.
Overall, the researchers found 11 “core themes” that consistently came up across the studies.
For patients, the most common themes were: control over their dying process; being free of pain; spiritual and emotional well-being; and a sense of life being “complete” — which meant having a chance to say good-bye to their loved ones, and feeling that they’d lived “well.”
For the most part, families had the same priorities.
Doctors and other health care providers, meanwhile, valued pain control and patients’ preferences for where and how they died. But they put less emphasis on the existential — like patients’ sense of life completion and spirituality.
To Morrison, the findings offer a “roadmap” for doctors to use in end-of-life discussions. “This essentially gives them a list of core themes that really matter to patients,” he said.
Still, Morrison stressed, any end-of-life discussion has to be highly individual. And he suggested it start when a patient is diagnosed with a disease that is likely terminal.
“Everybody is different,” he said. “We all have to understand and be able to talk about what we value. If it’s important to you to stay at home, tell your doctor you want the type of care that will help you remain at home.”
Jeste agreed. “Ultimately, well-being is defined by the dying person,” he said. “We talk all the time about ‘personalized medicine.’ That has to extend to the end of life. ‘Successful’ dying is an extension of successful living.”
For more on end-of-life care, visit Prepare For Your Care.org .
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