Friday, April 1, 2011

Family and Friends Rate End-of-Life Patient Care in Nursing Homes (Research, Hospice Video 1:00)

As much as people say they plan to die at home, most are dying in hospitals and nursing homes. What roles do family and friends who are patient advocates play? How do they feel about their experiences while their loved one is dying? Answers to these questions were topics for research at Brown University.

Telephone interviews were held with 54 close family members or friends of individuals who had spent at least 48 hours in the last month of life of a loved one in a nursing home. Respondents described the last year of life with the deceased loved one and their nursing home experiences.

These were the key themes of their areas of concern:

1)   Families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care.
2)    They noted staff members who did not fully inform them about what to expect in the dying process.
3)    Respondents reported burden and gratification in care they themselves provided which sometimes entailed collaboration with staff.
4)    Interviews also identified ways hospice care impacted families, including helping to relieve family burden.
These themes highlight the urgent need for a reduction in the family’s burden at this critical stage of caregiving a dying loved one. Also needed is improved communication so families can be better prepared at the end of the loved one's life. This includes more information about hospice care. The family’s trust in the nursing home depends on how these supports are enhanced to make their experience with a dying loved one beautiful for everyone.

This one-minute video titled “PSA #9 Nursing Home Hospice” is funded by the Pennsylvania Department of Aging and produced by the Take Charge Partnership. The scenario presented introduces a family member to hospice care for their loved one.

Frances Shani Parker, Author


  1. My mother died at home, father in long-term care. Each situation is different. My father's passing was much easier than my mother's. We were prepared for his, has caregiver support.

    I now have two hospice clients. One at home, the other on LTC. Very different needs and wishes.

  2. I think this serves to highlight the need for additional education and training for our direct-care givers as they interact with families in the Long-Term Care setting.

    Our cna's want to provide great care and they desire the necessary training and tools to do so. It is a win-win for the care-givers and the consumer of Long-Term Care when this can be accomplished.

    Good article/video

    Tony Sexton