Ten of us gathered for a family style dinner at my home in Virginia Beach on April 14th 2014. It was planned around the 7th Annual National Healthcare Decisions Day (NHDD) on April 16th.
We were following in the footsteps of the work of a group of healthcare and wellness leaders who are committed to break the taboo regarding conversations about end of life. This group launched a website and project on August 24th 2013 called “Let’s Have Dinner and Talk About Death.” www.deathoverdinner.org
Here’s what set our dinner apart from others
- There were nearly fifty years separating the youngest (26) and the oldest (73). That brought to the table many lifetimes of living.
- It was an evening all about living well, eating well, dying well, and the choices we can make in living our life to its end.
- Jim White, founder and owner of Jim White Fitness & Nutrition Studios, joined us to talk about these many things.
- We recognized that dying is about living. Living to the end of our days. That we are living until we die. It’s about our vitality and what we love about life, and when time grows short, what is most important to us.
- We chose to watch together two videos before we ate rather than have these assigned as ‘homework’ before this evening;
Randy and Sandy’s Advance Care Plan, 6 episodes on Vimeo where puppets showed us the light hearted approach to much needed conversation. https://vimeo.com/channels/722879
Imagine, a NHDD Speak Up Video, an amazing video on advance care planning, gracefully explaining why it matters for All of us.
What DID we talk about?
We began our meal with a toast to each other and to those who we carry in our hearts and are no longer with us.
Some of us had never experienced a serious illness of a loved one or themselves. Others had had a heart attach and were cancer survivors.
We talked about death and how we want to be remembered. How to deal creatively with death and making our life speak in a meaningful way. We acknowledged it was easier to talk about when we are gone and what we want left behind and remembered for than to talk about how we want to die.
We talked about the fear of the unknown and nonexistence. We knew this to be a topic for another time.
We shared our stories of someone, a loved one who died, a parent, a brother, a grandparent — those young, who died too early and those who reached a ripe old age before they passed. One shared about a son who died at 16. A story was told about a car crash that could have been catastrophic but they walked away.
THE SIMPLE TRUTH ABOUT OUR EVENING?
There’s nothing like the present and living each moment.
That we should be prepared & have a plan.
That dying we can on our own terms.
Here’s what emails followed our evening:
The evening was magical. Everyone opened up to share their experiences while the others sat quietly and absorbed the words.
We walked away feeling more at ease about discussing death. The food was so healthy, comforting and tasty.
It was amazing…I already have 2 couples interested in the next one!!
(On a lighter note) I adored the idea of an off switch.
I am thankful for this wonderful dinner to die for, dying and dining, or dying to eat night… “Which ever may apply ,” 🙂 I think the time is right for everyone to share their thoughts of life’s last breath and how they prefer to deal with it.
And for me, the hostess: I’ve been going over and over our evening. I wasn’t clear what would unfold. But what was apparent, was that all of us were willing to be part of creating this evening together. We simply let it happen. I continue to feel empowered …and comforted and released.Tags: Advance Directive, Death Over Dinner, Dying, End of Life, NHDD
Yes, advance directives are about when you are seriously ill or at end of life, but you shouldn’t wait until then. You should have an advance directive (or at least appointed a healthcare proxy) long before that just in case. This way, your loved ones know the care you want and you have someone you love speaking for you when you cannot.
TWO: AN ADVANCE DIRECTIVE CHANGES AS YOU CHANGE
An advance directive form isn’t something you complete and then leave dormant for years. It is, in a sense, organic and living. It evolves, as you grow older, expressing something different from what was stated in its original form. That’s why an ongoing conversation with family is important. What care you’d want at thirty is different from what you’d want at sixty or eighty.
THREE: AN ADVANCE MEDICAL DIRECTIVE DOES NOT MEAN “DO NOT TREAT”.
It means being treated the way you want.
Yes, this post probably oversimplifies all the paperwork and choices around dying care wishes but my hope is it empowers you to create an advance care plan that’s about you and how you want to live life to its end.
You can lead by example. A brother talking to a sister, an adult child to a parent, parents to their children, a husband to his wife, friends with friends.
Just say yes. Have the conversation and a plan about how you wish to die and then….well then, we begin a person at a time to make the taboo around not talking about dying a preexisting paradigm.Tags: ACP Decisions, Advance Care Plan, Advance Directive, Dying care, End of Life
ACP, Advance Care Plan, Advance Directive, Advance Medical Directive, End of Life Care
For these professions you are required to select someone to speak for you when you cannot in case of a medical crisis. Of course it makes sense because these individuals work at higher-risk jobs than say those of us who work behind a desk or sell merchandise. These brave souls live more on the edge.
But a medical crisis or emergency can happen at any time to any one. So why not be prepared? Why not decide that this mandate is a wise one?
BUT…..WHO SHOULD BE REQUIRED?
Twitter me your response with this tagline #HCProxy Mandate:
Yes or No for mandating and who should be required to do it.
I’ll tally it up & let you know the results from the responses.
Here’s the beginning of a list of possibilities:
- Selective service registrants
- High school students over 18
- College and university students
- Hospital staff
- Licensed healthcare professionals
- Anyone with health insurance
- Medicaid and Medicare recipients
- All federal employees, or state employees, or city/county employees
- Everyone with a driver’s license, commercial driver’s license, boat owners
- Medical and law school students
Now this possibility, medical and law school students, could be a good one to start with because advance medical directives are associated with legal and medical choices. Our future doctors and lawyers could insist on selecting a healthcare proxy, an action speaking volumes about its importance of having someone there in the decision making process that knows your wishes for care and could make sure they are honored.
None of these cost much to implement. Some more than others for sure but still, isn’t this cost easier to bear than the cost of not having someone speak on your behalf to say what you want or don’t want for care?
WHAT DO YOU THINK?
Let me hear from you. Twitter me, @murdockdiane, your response with this tagline #HCProxy Mandate: Yes or No for mandating and say who should be required to do it.Tags: Advance Directive, Advance Medical Directive, Dying, End of Life, Healthcare Proxy
Last week my golden retriever Belle and I went to visit our friend Louise Wilson at Atlantic Shores, a continuous care facility in Virginia Beach. We sat quietly in the lobby waiting for her. Others who lived there stopped to pat her head, scratch her tummy, and call her the sweetest things. She’s one of those dogs whose tail wags vociferously and face holds a wide grin.
A man named George came over and sat with us and said, “I have a story to tell you.” I love stories and so he began:
I had a golden retriever named Bobby, bout the same size as your dog. We got him as a pup when I was in my late 60s. Shared years of sitting around and taking long walks. Bobby, my wife, Greta, and I were all growing old together. He had that same smile just like your dog here, Belle. When Bobby was 14 he was having a lot of difficulties — trouble walking and standing. Eating no longer seemed to hold the same pleasure. He was simply old and ailing and in great pain. He looked as miserable as he felt; that smile of his wasn’t there anymore. His eyes spoke volumes and if he could have spoken, words were unnecessary. They would have been redundant anyway.
We decided we couldn’t watch him suffer like this anymore and took him to the vet. We felt it was best to give him peace and put him down. We left heartbroken saying our last goodbyes. We couldn’t bear to stay.
The vet called the next day, “I have something to tell you. Yesterday when you left, something changed with Bobby. He perked right up. We observed him and couldn’t follow through with putting him to sleep. Why not come over here and get him!” We were overjoyed to bring him home.
He was indeed like his old self and his smile was back. He ate a big dinner and curled up at my feet while I read a good book. Next morning, we found Bobby had died that night at the foot of our bed. You see, what happened is Bobby just wanted to come home to die and have us by his side.
George looked at me, “Good story, right?” “One of the best,” I said and thanked him for sharing it.
It truly was a great story how Bobby got his wishes without saying a word. I wish we could do the same about our care wishes when dying but it very rarely happens that way. And our silence on the topic of dying is associated with it being morbid and so we avoid the subject. But we need to have a plan about how we wish to die, where and what we want for care.
Morrie Schwartz, the old professor and humanist in Mitch Albom’s book Tuesdays with Morrie, said some powerful words that speak to the heart of how we die in America and how we don’t want to think or talk about it, “There’s a better approach. To know you’re going to die, and to be prepared for it at any time. That’s better.”
Tags: Advance Directive, Compassion and Choices, Dying care, End of Life
Her older brother is going for testing now to be a live donor. This would be three times with living donors willing to save her life. The first transplant lasted twelve years, the second, ten. She’s in her 50s. Donors, doctors and medicine clearly are her heroes.
There’s no question she is facing tough stuff but her attitude speaks volumes. She’s one of the most vibrant and brave people I’ve met.
She wrote me to say that the subject of dying is completely terrifying to her and said that’s true for the many others who are fighting for their lives every day.
Dying scares me too.
But it isn’t a choice. We are all going to die. Knowing this doesn’t make it any easier to talk about it but not talking about it can lead to unwanted care. And unwanted care is wrong care.
That’s why I write about dying. We can choose how we wish to die by making our choices reflect who we have been our whole life. How our beliefs, background, family, and experiences all come into play as we live every day to the end of our days.
Dying is deeply personal and should be about you. That means knowing your wishes and the wishes of those you love.
It’s knowing you are going to die and being prepared for it at any time. That’s better than not having the conversation and an advance care plan. That’s better for you and better for your loved ones.
I reflect on her words and yes, it’s hard to know what to say to her. I want the best for her. Now and tomorrow and the next day and the day after that. I hope she thinks about what she is saying and thinks about what I am saying too.Tags: Advance Care Planning, Advance Directive, Dialysis, Dying, NHDD, Transplant