As patients, as family members, as friends, as health care providers, we have all faced end-of-life issues at one time or another, and we will face them again. And again.
This weekend, the "Engage With Grace" message is being broadcast virally, through a "blog rally," at a time when many people are with family and friends over the long weekend. (Thanks to Paul Levy and Charlie Baker for getting the issue out of the blogosphere and onto page one of the Boston Globe today, too.) The point is: we all need to have the potentially uncomfortable conversation with people close to us about what kind of treatment we would want, and they would want, if incapable of making or communicating health care decisions. (If you really want to monopolize Thanksgiving dinner conversation, you could also start the family health history conversation being promoted by the Surgeon General.)
End-of-life decisionmaking has long been an issue of great personal and professional interest to me, and I am proud to have played a role in having out-of-hospital DNR orders recognized in Massachusetts by EMS providers, as an example.
Download your copies of the Massachusetts health care proxy form or other states' proxy or living will forms — and add specific instructions about nutrition, hydration, and anything else that is important to you so that everything is crystal clear. My mom kept a stack of living will forms in the dining room when I was growing up, and was not shy about raising the issue with dinner guests and offering to witness their directives. Having the conversation is a starting point; we all need to follow through and make sure that our loved ones' wishes are documented, placed in medical records, discussed with physicians and other caregivers, and honored.
When I have the opportunity to speak to groups of lawyers or health care providers, I often ask for a show of hands: how many of you have health care proxies? The percentage seems to have increased over time, but it is still not where it needs to be. If groups that should be above average in this respect are not all raising their hands, then we clearly have a lot to do in terms of educating the general public about the need to have the sometimes difficult conversation with friends and family members. That's what the Engage With Grace project is all about. And with that, I turn over this post to Engage With Grace:
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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. This post was written by Alexandra Drane and the Engage With Grace team)
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The Harlow Group LLC
Health Care Law and Consulting
Andrea Wdowiarz says
Thank you for talking about this very important topic! My brother (a paramedic) and I (a hospice social worker) have had this discussion with our family. This year I am bringing blank Power of Attorney for Medical care documents with me to the holiday gathering. We have to have both the discussion and the document so that there are no questions as to our wishes.