Survey Shows Views on End-of-Life Care, Death Similar Across Countries

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Billie Whitehurst By Billie Whitehurst, MS, RN 
Vice President and General Manager, Change Healthcare
Man Holding Hand of Patient in Hospice Care

Despite geographical and demographic differences, attitudes about end-of-life care and death aren’t that different in the United States compared to Italy, Brazil and Japan, according to a new survey. But Americans are more attuned to the end-of-life wishes of loved ones.

The Kaiser Family Foundation and The Economist collaborated on the survey, polling about 1,000 people in each country to gauge opinions on issues related to death. About seven in 10 participants in each country expressed a desire to die at home, rather than in an institutional setting. But only 40% believed an at-home death would be possible when the time came.

Americans outpaced other countries in knowing the end-of-life wishes of loved ones who died in the previous five years, where the person helped with medical decision-making. Nearly 90% of US respondents said they knew their loved one’s wishes. But in the other countries, at least one-third of respondents involved in medical decisions said they weren’t sure of the wishes of loved ones.

Those of us in the home health and hospice industry are pleased with the results. It was just 40 years ago when the first federal hospice demonstration program was established and only 30 years since the Medicare Hospice Benefit was made permanent.

End-of-Life Wishes vs. Real Experiences

An earlier longitudinal study of emergency department use among older adults found that more than half visited the emergency department (ED) in the month prior to death, a figure that rose to 75% within the last six months. Of those going to the ED within the last month of life, 77% were admitted, and 68% of those admitted died in the hospital. When contrasting the ED experience for older patients in general with patients enrolled in hospice, the latter group rarely visited the ED.

Studies like these point to the disconnect between what patients want at the end of life and the experience they are likely to have. Palliative care programs for chronic conditions, home care for rehabilitation, help with activities of daily living and aging in place, and hospice care toward the end of life can help patients have more say about their own care.

The Kaiser/Economist survey also queried participants about their own deaths. When asked to rank “extremely important” choices, Americans listed:

  • Making sure they don’t financially burden family with their care (54%)
  • Having loved ones around them (48%)
  • Being at peace spiritually (46%)
  • Being comfortable and without pain (42%)

Geographic as well as racial differences in the US were noted on a question about the importance of “living as long as possible.” Participants in Japan, Italy and the US ranked this question last out of seven choices. Researchers believe Brazil was different because of its relatively younger population compared with the other countries.

However, responses on the same question were noticeably different in the US when race was considered. Just 23% of US respondents overall listed this as “extremely important.” However, 45% of black respondents and 28% of Hispanic respondents ranked living for as long as possible as a priority, compared with 18% of whites. Clinicians may want to keep these figures in mind when responding to home health and hospice patients. The full report is available here, and you can break out the US responses.

We’ve come a long way since then in terms of acceptance by patients, families and physicians that hospice isn’t giving up, but compassionate care at life’s end for patients and their loved ones. We believe talking about death should not be taboo, but rather encouraged to help more closely match wishes and experiences. Here at Change Healthcare, we’re pleased to support our customers through these changing attitudes and overall acceptance of hospice care.

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