Sometimes acquaintances describe how a hospice program entered the lives of an aging parent during the last week or even in the last few days of life. My husband and I are aware of just how much hospice offered to our family during the four months before his mother died. However, we have spoken with people — who were less satisfied than we were — and more often than not the family received hospice services during the last few days a parent’s life.
An article published in the Journal of the American Geriatrics Society explores the use and effectiveness of hospice with nursing home residents who are dying of dementia. In the article, Does Hospice Improve the Quality of Care for Persons Dying of Dementia? (abstract), Dr. Joan Teno and colleagues explore the perceptions of bereaved family members (538) whose loved ones received hospice services in a nursing home setting at the end of their lives. The researchers interviewed family members following a death, using a cohort that they were tracking in a previous study of dementia patients and feeding tubes. This United Press International article, Hospice Helps Dying for Dementia Patients, adds a few more details.
Bereaved family members were most satisfied and reported fewer concerns when end-of-life hospice services were used, and satisfaction was higher among people who perceived that their dying relative had received the services “at the right time,” the authors write. The research conclusions made me wonder whether, in some cases, hospice services are added too late in the process.
The article (available for a fee or from a medical library) points out that a solid number of the respondents (33) felt that hospice services were added too late in the treatment process, and these same people reported more concerns and unmet needs during the end-of-life period.
Hospice care has the potential to support families positively and improve the period at the end of a person’s life. The article states that:
Because the goals of hospice care are effective symptom management and maximization of quality of life, hospice services should be of significant benefit to nursing home residents, yet little research has examined the effectiveness of hospice services for persons dying of dementia.
Joan Teno, M.D., M.S., is a professor of community health at Brown University who examines how to improve the quality of live in older, frail individuals, including at the end of life.
Dr. Teno also published an article, described on this blog in May 2010, about the number of late stage dementia patients who receive feeding tubes.