It is important to talk to loved ones about their wishes for end-of-life care because research shows that many Americans are not dying the way they say they want to.
According to surveys conducted by the National Hospice and Palliative Care Organization and the California Healthcare Foundation, most people (70 percent to 80 percent) say that they would prefer to die at home. However, according to the Centers for Disease Control and Prevention, the majority of people 65 years and older died in a hospital or nursing home; less than one-quarter died at home.
Why are so few people dying where they say they want to? Experts interviewed by Be Smart. Be Well. say it is because people are not talking about their wishes for end-of-life care.
How does talking about end-of-life decisions make a difference in end-of-life care? According to a study published in the Annals of Internal Medicine, seniors with living wills (a legal document that tells which types of medical treatments and life-sustaining treatments you want or don’t want) were more likely to die at home and less likely to die in a hospital than seniors without living wills.
And research by the Agency for Healthcare Research and Quality found that dying patients who had talked with their families or physicians about their preferences for end-of-life care had less fear and anxiety, and they felt like they had more ability to influence and direct their care.
On the other hand, studies in the Archives of Internal Medicine and JAMA suggest that when a person’s end-of-life decisions are unknown, end-of-life care tends to be more aggressive, with the patient suffering more physical distress.
In addition, in cases where end-of-life conversations have not taken place, bereaved family members and caregivers experience worse quality of life and are at higher risk for experiencing regret or developing a major depressive disorder after their loved one’s death.
According to a national telephone survey conducted by The Conversation Project in 2013, 90 percent of people think it is important to talk about their own and their loved ones’ wishes for end-of-life care. Yet less than 30 percent have actually had these sorts of discussions.
According to another survey by the Pew Research Center, of the people with living parents, only about half say they have asked their parents’ wishes for end-of-life care.
Yet all the avoidance and dread might be unnecessary: According to The Conversation Project survey, nearly half of Americans say that if a loved one asked them about their wishes for end-of-life care, they’d welcome it and be relieved to discuss it.
Although most people cannot choose how they will die, everyone can plan for the type of care they would like to receive at the end of life. The best way to ensure end-of-life wishes are respected is to talk to loved ones about your own and their end-of-life decisions.