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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The Spirit Catches You: Medical and Cultural Misperceptions

For several months I’ve listed Anne Fadiman’s book, The Spirit Catches You and You Fall Down, as my current read. While the story describes a struggle between a refugee Hmong family with a sick child and the medical world, the book, with its emphasis on cultural assumptions and misperceptions, is well worth the attention of adult children who help aging parents when they are in and out of hospitals.

I first read The Spirit Catches You  more than six years ago, but I reread it, along with colleagues, this past summer. My earlier encounter came when Yale Medical School assigned it to students, including my daughter, in the entering class of 2009 — Fadiman says that it’s required reading at many med schools. When my daughter finished the book, she handed it to me. I was especially excited the second time around because I knew that I would have the opportunity to hear the author speak. She presented last week.

The Spirit Catches You and You Fall Down (I’ve read somewhere that words in the title are a translation for epilepsy in the Hmong language) describes an epic clash among the medical system, a hospital, a pre-literate, but very spiritual Hmong family, and Lia, a seriously ill child. And it is an epic — as I read, I hear an orchestra dramatically performing Mahler, Bruckner, or Wagner in the background. While no one in the story intended for things to go badly — everyone was dedicated to solving problems — the book highlights all of the issues that make it difficult for people, in this case non-English speaking refugees, to navigate the medical system. These include multiple medications, non-compliance, and brief (abrupt from the point of Lia’s parents) visits with medical personnel. Continue reading

What it Takes to Write Good Remembrance

Late in 2009, soon after I began writing this blog, my husband’s mother was dying, and we were making lots of notes about her long life. Before we sat down to write a remembrance, however, we looked around on the web for ideas, hoping to find some examples to read. Not much was available. There were plenty of fill-in-the-blank templates, but locating well-written and thoughtful pieces that made an effort to remember and eulogize a departed friend or family member was difficult.

A week ago, when I read writer Mona Simpson’s eulogy/remembrance of her brother, Steve Jobs, my first thought was that it is one of the finest that I can remember. Since it appeared in the October 30, 2011 New York Times, I’ve sent the link or handed a copy of Simpson’s piece to half a dozen other people to read. Everyone reacts the same way that I did — it’s good.

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Read More on Green House® Homes

I’ve just read the post, Two New Green House Stories, over at Allen Power’s blog. His post tells a story that illustrates how Green House® “at home” expectations and environment make an enormous qualitative difference for an aging senior. And be sure to read far enough along to get to the mattress anecdote — it ‘s a hoot.

Power’s blog is a part of the Changing Aging blogstream. Learn more about Green House® homes here.

I’m pretty excited about what’s about to happen at Virginia Mennonite Retirement Community (VMRC), where my parents currently live in a cottage. On January 5, 2011, two months plus a few days away, VMRC will break ground for Woodland Parkthe site for its new Green House® homes. I’ll be attending the groundbreaking ceremony.

Right now the construction site  is a large meadow, and what is most noticeable are the large number of trees still standing after demolition. I plan to post lots of pictures as the Woodland Park construction proceeds.

Here’s the floor plan. Click on the image to make it larger.

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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Jane Gross Interview: “On Being” Radio Program

For some time now I’ve listed Jane Gross’ book, A Bittersweet Season: Caring for Our Aging Parents — and Ourselves, as my current read, even though I finished reading it two months ago. I’ve kept the book posted because it is a compelling and real-life description of what it takes — the agony, challenge, love, collaboration, and commitment — to support an aging parent when that person needs additional, day-to-day, support from an adult child.

Jane Gross was a guest on Krista Tippett’s public radio program, On Being. The episode, The Far Shore of Aging, features Gross discussing her book, and she also describes how we caregivers need to take care of ourselves as well as our parents and family members. The program is available as a podcast via iTunes, or it is possible to listen right at the On Being website, where additional resources and reading recommendations on this program and many others are available. Gross created the New Old Age blog at the New York Times.

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