Category Archives: Caregiving – General

Many of you have heard of Ellen Goodman’s “Conversation Project,” which is an attempt to get families to share their wishes about the end of life. This is a good article in O Magazine (oprah.com) with a question and answer with Ms. Goodman.

www.oprah.com/relationships/how-to-talk-about-dying-ellen-goodman-the-conversation-project

The Most Important Conversation You’ll Ever Have
No one wants to bring up dying, but talking with your loved ones about the final stage—theirs and your own—is essential.
O Magazine
September 17, 2012

This post in today’s “The New Old Age” blog in the New York Times is about how to start the conversation with a loved one about advance care directives and end-of-life wishes.  One terrific conversation starter we’ve used in our family are the “Go Wish” cards.  (I got a couple of sets two years ago for $5 each from coalitionccc.org.)  At our recent PD/parkinsonism caregiver event in Foster City, Dr. Matt Arnold recommended the “Go Wish” cards as well.

Dr. Arnold also recommended the “Five Wishes” document, which we’ve talked about at local support group meetings for seven or eight years, after local support group member Storme first brought it to a meeting.  (See fivewishes.org.)

Though these resources have been around for awhile, as the blog post notes below, fewer than 40% of us seem to have advance care directives or living wills.

Now comes “The Conversation Project” — theconversationproject.org. You can view online their 10-page “Conversation Starter Kit” here:

theconversationproject.org/wp-content/themes/conversation-project/images/TCP_StarterKit.pdf

If any of you end up using this kit, please let me know your thoughts on its value!

Here’s a link to the blog post:

newoldage.blogs.nytimes.com/2012/08/17/how-do-you-want-it-to-end

The New Old Age: Caring and Coping
How Do You Want It to End?
By Paula Span
New York Times
August 17, 2012, 3:45 PM

There’s a good article in today’s Wall Street Journal on living wills.  Here are key excerpts:

“An estimated 25% to 30% of Americans have filled out living wills, documents that spell out wishes for medical treatment. But ethicists say the typically simplistic documents aren’t the solution many hoped they would be. Life-prolonging medical technology has far outstripped doctors’ ability to predict outcomes. The hardest choices center on when quality of life will be so diminished that death is preferable.  As such, some health organizations are trying to improve living wills, allowing for more flexibility and nuance. Some ethicists, meanwhile, are de-emphasizing living wills altogether and focusing on appointing a trusted family member or friend as your health-care agent. … The problem with living wills is that most people can’t articulate what they want… And even if they can, family members often don’t properly interpret those wishes.”

I think this reinforces the idea that we need to choose carefully a family member or friend who will be our health-care agent, and we need to have a lengthy discussion with that person in advance about what “quality of life” means to us.  I’m the health-care agent for a local support group member who is having surgery on Monday.  I agreed to be her agent only if we have lengthy discussions about her wishes if something goes wrong during the surgery.  We are getting together on Sunday for the second time to review her wishes.

The article mentions two sources of living will documents:
* Five Wishes:  fivewishes.org; $5; can be completed online
* Lifecare Directives:  lifecaredirectives.com/products.html#ead; cost is $8

After local support group member Storme showed me the Five Wishes booklet years ago, my family adopted it as our living will template.  As noted in this article, Five Wishes provides lots of blank space for customization of the living will.

Another resource mentioned in the article is the American Bar Association’s “Consumer’s Tool Kit for Health Care Advance Planning,” described as a tool for getting the conversation started.  The tool kit is available at no charge online:
http://www.americanbar.org/groups/law_aging/resources/consumer_s_toolkit_for_health_care_advance_planning.html

Here’s a link to the WSJ article:

http://online.wsj.com/article/SB10001424052702303990604577369920659306562.html

A New Look at Living Wills
These critical documents about your preferences for end-of-life care don’t always work as planned. More flexibility might be the answer.
By Laura Johannes
Wall Street Journal
June 8, 2012, 9:26 a.m. ET