We make choices throughout our lives — where we want to live, what types
of
activities will fill our days, with whom we spend our time.
These choices
are often a balance between our desires and our means, but at the end of the
day, they are decisions made with intent. But when it comes to how we want
to be treated at the end our lives, often we don’t express our intent or
tell our loved ones about it.
This has real consequences. 73% of Americans would prefer to die at home,
but up to 50% die in hospital. More than 80% of Californians say their loved
ones "know exactly" or have a "good idea" of what their wishes would be if
they were in a persistent coma, but only 50% say they’ve talked to them
about their preferences.But our end of life experiences are about a lot more
than statistics. They’re about all of us.
So the first thing we need to do is start talking. Engage With
Grace: The One Slide Project was designed with one simple goal: to
help get the conversation about end of life experience started. The idea is
simple: Create a tool to help get people talking. One Slide, with just five
questions on it. Five questions designed to help get us talking with each
other, with our loved ones, about our preferences.
And we’re asking people to share this One Slide – wherever and whenever
they can.at a presentation, at dinner, at their book club. Just One Slide,
just five questions. Lets start a global discussion that, until now, most of
us haven’t had.Here is what we are asking you: Download The One
Slide and share it at any opportunity – with colleagues, family,
friends. Think of the slide as currency and donate just two minutes whenever
you can. Commit to being able to answer these five questions about end of
life experience for yourself, and for your loved ones. Then commit to
helping others do the same. Get this conversation started.
Let’s start a viral movement driven by the change we as individuals can
effect…and the incredibly positive impact we could have collectively. Help
ensure that all of us – and the people we care for – can end our lives in
the same purposeful way we live them. Just One Slide, just one goal. Think
of the enormous difference we can make together.
To learn more please go to www.engagewithgrace.org.
Categories: Uncategorized
Hi Mathew –
Thanks for your important message. I’ve added it to my news site at http://news.avancehealth.com
My position is half way between Dr. Poses and A. Drane’s – I have a progressive illness, I’m severely disabled and getting worse fast, and was just having this conversation with a close relative who has power of attorney and with whom I drew up my living will.
She was concerned that too much still isn’t pinned down – was wanting more specificity from me. But even with a clear and obvious direction to my disease progression, there are many ways things could go at the end. My severe osteo could lead to a fracture. I could simply stop being able to get out of bed, which I can barely do. Any of the numerous stage two pressure sores could worsen…
So I feel good about having those basic documents done – if I’m ever a living vegetable, they’ll be pulling the plug – but also see that there’s some unavoidable uncertainty involved. I myself can’t foresee exactly how I’ll feel or what I’ll want in these different scenarios.
But unless you are unfortunate enough to have a terminal disease, how in the world should you answer this?
It seems to me, for a healthy person, or even a chronically ill person, the answer to every question except 4 would be “it depends.” They would depend on the circumstances in which one would actually have to make such decisions.
For example, for a patient with a heart attack (myocardial infarction), the probability of a life-threatening arrhythmia is real, but the success rate of cardiopulmonary resuscitation for this circumstance is relatively high. So it would make sense for many people to answer 5 for question 1 were they to have a heart attack, knowing that background.
But it might be very different for someone who acquires a debilitating and painful chronic disease.
Furthermore, could you really predict what you would want or how you would feel if you were to be in such a situation?
In fact, the psychological literature suggests that people are not good at predicting their decisions or their values in advance were they to encounter some situation which they have never previously experienced.
So I am unfortunately skeptical that for most people addressing these sort of simple questions will lead to any kind of enlightenment.
Wow……what a timely, simple yet provocative solution to a COMPLEX and growing in scale problem we boomers face. I am wrestling with this issue with my mother. We’ve discussed her wishes ad nauseum (dying at home, no heroic measures, etc.), yet the “system” out there will do everthing in it’s power to supplant those private wishes – even when initmately documented in legal instruments.
Could it be payment incentives that thirst institutional consumption and create captives at this intensity rich stage of the death and dying process?
Thanks for connecting the dots and offering this sensible idea.
Thanks to all who have worked to spread this message today.
As a health care lawyer, my occupational disability is seeking to ensure that conversations started through the one slide actually end up with properly documented health care directives that are entered into medical records and discussed in advance with physicians and caregivers.
See my Engage With Grace post, with links to health care proxy and living will forms for all states, at:
http://healthblawg.typepad.com/healthblawg/2008/11/engage-with-grace.html