This past week I was contacted by Paul Levy (who blogs at Running A Hospital) asking if I would participate in a project called "Engage With Grace". I gladly accepted. I've had personal experience with watching a loved one die the way they chose and unfortunately I've also had experience watching a loved one die without their wishes being heard. "Engage With Grace" will help facilitate an important discussion that everyone should have with their loved ones. If anyone would like to add this post to their blog (should be left up starting today and ending Monday) please email me and I will send you the code.
Stacy
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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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7 comments:
Absolutely necessary. Thank you.
No, thank you for reading.
I was honored to be a part of this.
Hubby and I have had countless discussions on my end of life wishes. After dealing with a few family members and seeing their wishes not be met, it was so important to me to make sure that he knew what I wanted.
I was truly blessed in that my grandparents (all of whom I was close to) were "allowed" to die according to their wishes...
Horrific though it may have been, I am so glad that my son passed away in my arms, on "his" time-table.
I am scared because my parents have no living will!!! --and we *have* talked about their wishes, but I keep telling them I want it in writing!!!
Stacy,
Congrats on Paige's birthday. How wonderful she's ten and how good that you were able to feel those emotions. In our case, although I had mild emotions for my twins' first three birthdays, it was their fourth birthday that brought intense PTSD symptoms, including racing heartbeat, insomnia, crying and angry outbursts, flashbacks ( I thought I heard my twins' respirator pump one night but it was only my little 5 month old wheezing next to me in her co-sleeper), and other minor symptoms.
I think it was the fact that I was ready to experience the emotion of their NICU stay, that I had processed it enough to safely revisit it, and that this process alone can unleash powerful emotions. So oddly enough even when our children are 'well' and even when we are feeling well enough, that is the time that we may feel safe enough to visit the raw intensity of what we and they have experienced.
As for end of life conversations...I have been going over this with my parents who both had some medical issues in the past month (carcinoma and heart failure). It is so so important to have these conversations before it is too late and so important to take the time to have them in way that furthers connection not distance from those we love. There is a great book I am going to get for myself and my parents by Ira Byock called, The Four Things That Matter Most: A Book About Living.
I can't get the html but you can find it on amazon. good luck...and nice to be back and part of the conversation.
One of the things which I think sometimes gets left out of these discussions / thoughts is NOT whether or not the dying have made their wishes clear, but rather, if the living are mentally, spiritually, emotionally ready to comply "at that moment". We have been so completely ingrained to believe that the dying will speak in clear, poignant, halting last words and then quietly sink into the pillow in final silence - but often, death looks MUCH more agonizing and scary. We are so trained to "do something" when we see someone agonizing for a breath or exhibiting any of the signs that define the transition between life and death. One of the fantastic things about *good* hospice nursing, is that they work very closely with the family to explain in tiny detail what 'dying' can look like and really force the family to consider whether or not they are truly committed to honoring their loved ones wishes, or whether their loved ones would be more likely to have their wishes observed in a hospice environment outside your home. When "THE" moment came with my Mom, my younger brothers did experience extreme ambivilence and had to leave the house for the last 8 hours, coming in only at the last 30 minutes. While the experience is burned into my psyche, I will always be thrilled and grateful that my Mom got the death she wanted to the last detail / moment. But had the hospice nurses not spent hours in the weeks leading up to the day - I would have been entirely unprepared. I like to THINK I would have performed the same way - but honestly ... I can never know. We have a dozen different "Baby Story" type programs to show a thousand different way we can be born and how the families got through that ... but not one single show about the dignity of death with love and intent.
Sheila
Sheila wrote: "One of the things which I think sometimes gets left out of these discussions / thoughts is NOT whether or not the dying have made their wishes clear, but rather, if the living are mentally, spiritually, emotionally ready to comply "at that moment".
So true Sheila. Thank you for your comment. It's a direction that we don't often think about unless we've lived through it!
buddhist mama wrote: "Stacy,
Congrats on Paige's birthday. How wonderful she's ten and how good that you were able to feel those emotions. In our case, although I had mild emotions for my twins' first three birthdays, it was their fourth birthday that brought intense PTSD symptoms, including racing heartbeat, insomnia, crying and angry outbursts, flashbacks ( I thought I heard my twins' respirator pump one night but it was only my little 5 month old wheezing next to me in her co-sleeper), and other minor symptoms."
It's amazing how those PTSD symptoms come out of nowhere. There are times when I'm caught off guard. Now I'm just thankful that they don't come that often!
Nice to see you again!!
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