End-of-Life Decisions

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End-of-Life Decisions: Why Does It Matter?

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.

Place o death, over time

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.

Read The Key to a Better End of Life: Talk About It.

What happens when end-of-life decisions are known

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.

What happens when end-of-life decisions are unknown

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.

People think they should talk about end-of-life decisions, but they don’t

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.

Take the End-of-Life Decisions Quiz.

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.

References

According to surveys conducted by the National Hospice and Palliative Care Organization and California Healthcare Foundation, most people (70 percent to 80 percent) say that they would prefer to die at home.

“Keys to Quality Care.” National Hospice and Palliative Care Organization.
http://www.nhpco.org/about-hospice-and-palliative-care/keys-quality-care

“Final Chapter: Californians’ Attitudes and Experiences With Death and Dying.” California Healthcare Foundation, 2012.
http://www.chcf.org/~/media/MEDIA%20LIBRARY%20Files/PDF/F/PDF%20FinalChapterDeathDying.pdf

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.

“Health United States, 2010.” Centers for Disease Control and Prevention, 2010. http://www.cdc.gov/nchs/data/hus/hus10.pdf

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.

“The Relationship Between Having a Living Will and Dying in Place. H. Degenholtz, et al. Annals of Internal Medicine. 2004; 141:113-117.
http://annals.org/article.aspx?articleid=717637

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.

“Advance Care Planning, Preferences for Care at the End of Life.” Research in Action, Issue 12. March 2003. Agency for Healthcare Research and Quality.
http://www.ahrq.gov/research/findings/factsheets/aging/endliferia/index.html

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.

“Health Care Costs in the Last Week of Life: Associations with End of Life Conversations.” B. Zhang, et al. Archives of Internal Medicine. March 9, 2009, vol 169, no 5, pp 480-488.
http://archinte.jamanetwork.com/article.aspx?articleid=414825

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.

“Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment.” JAMA. October 8, 2008, vol. 300, no 14, pp 1665-1673.
http://jama.jamanetwork.com/article.aspx?articleid=182700

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.

The Conversation Project Surveys, conducted by Kelton, August and September 2013.
http://theconversationproject.org/wp-content/uploads/2013/09/TCP-Survey-Release_FINAL-9-18-13.pdf

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.

“Growing Old in America.” Pew Research Center, June 29, 2009.
http://www.pewsocialtrends.org/2009/06/29/growing-old-in-america-expectations-vs-reality/

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.

The Conversation Project Surveys, conducted by Kelton, August and September 2013.
http://theconversationproject.org/wp-content/uploads/2013/09/TCP-Survey-Release_FINAL-9-18-13.pdf

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