Why is Hospice Still A Tough Call–Even for People Who Know?

Check out this fact sheet

Check out this hospice fact sheet.

When a person is approaching the end of life, we can find no easy answers, no solution that fits every person’s or family’s situation, even when they know a lot about the options available to them.

To illustrate this you will want to read For Hospice Pioneer, Still a Tough Call, by Paula Span at the New York Times New Old Age Blog. She describes the end-of-life period for Paul Brenner, age 73, who spend years organizing and leading hospice organizations around the country. Despite all of this experience, it was still challenging for Mr. Brenner and for his family to engage with hospice.

Over and over I hear from friends and acquaintances how a loved one uses hospice for the last several days or perhaps a week at the end of life, and I am sometimes puzzled about how difficult it seems to be to decide to use hospice. My observation is juxtaposed with my family’s experience — a bit more than three months when my mother-in-law participated in a hospice program that made us all more comfortable and less stressed during those final months of her life.

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Eleanor Clift Writes About Hospice

Orchids were a favorite of Mother's.

Journalist Eleanor Clift has written a superb article in the August 2011 publication Health Affairs about the hospice experience of her husband, journalist Tony Brazaitis, in the months before he died of cancer. It’s freely available and filled with astute observations and information — a good read for anyone, but especially for families who may have to consider hospice in the near future.

In Hospice and the ‘End Game,‘ Clift describes what she calls “the different philosophy of care” of hospice programs and how they focus on quality at the end of life. She writes:

They say hospice is the best medical care that no one wants because it signals the end of life, and American culture is all about fighting until your last breath. But hospice is far more than a waiting room for death; it’s a different philosophy of care for both the patient and the family.

In our family that different philosophy ensured that we spent four high quality months with my husband’s 90-year-old mother at the end of her life.

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Hospice Helps When a Parent With Dementia is Dying

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.

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Washington Post Article on Hospice and Palliative Care

Today’s Washington Post features an article, Progress Needed on End of Life Care, by Janice Lynch Schuster, describing the urgent need for improvements to palliative and  hospice care. The article describes the problems that still exist for many patients at the end of their lives who experience unnecessary suffering and pain.

I’ve written about our family’s amazing experience with hospice, ending over a year ago when my husband’s mother died in January 2010. Here are a few As Our Parents Age posts from the past that focus on hospice and palliative care.

End-of-Life Conversations

Over at the Inside Aging Parent blog, Carol recently posted Conversations About End of Life with a link to a BlogTalk radio program interviewing author Kelsey Collins (check out Collin’s videos presentations). I have just listened to the program so I recommend checking out Carol’s post and the radio interview.

In her book Exit Strategy:  Leaving this Life with Grace and Gratitude (this link to the e-book, which I am downloading) Collins, a hospice chaplain, talks about how she helps parents and their family caregivers find ways to approach end-of-life topics.