Posts Tagged ‘end of life’
Sunday musings 7/8/12
Sunday musings…
1) Wimbledon. Breakfast at Wimbledon. Why thank you, yes, I think I will.
2) ESPY. Kyle Maynard is up for an ESPY. Go find a place to vote for him.
Now.
3) Life? Billy Ray (not his real name, of course) turned off his implantable defibrillator (ICD) yesterday. Billy Ray is 44.
In my day job I was asked to evaluate him for a problem in my specialty. I was told he was about to enter hospice care and assumed that he was much, much older and simply out of options. I admit that I was somewhat put out by the request, it being Saturday and the problem already well-controlled. Frankly, I thought it was a waste of my time, Billy Ray’s time, and whoever might read my report’s time, not to mention the unnecessary costs. I had a very pleasant visit with Billy Ray, reassured him that the problem for which I was called was resolving nicely, and left the room to write my report.
44 years old though. What was his fatal illness? What was sending him off to Hospice care? I bumped into his medical doc and couldn’t resist asking. Turns out that Billy Ray has a diseased heart that is on the brink of failing; without the ICD his heart will eventually beat without a rhythm and he will die. A classic indication for a heart transplant–why was Billy Ray not on a transplant list? Why, for Heaven’s sake, did he turn off his ICD?
There is a difference between being alive and having a life. It’s not the same to say that one is alive and that one is living. It turns out that Billy Ray suffered an injury at age 20 and has lived 24 years in unremitting, untreatable pain. Cut off before he even began he never married, has no children. Each day was so filled with the primal effort to stop the pain he had little left over for friendship.
Alive without a life. Alive without living. Billy Ray cried “Uncle”.
I have been haunted by this since I walked out of the hospital. How do you make this decision? Where do you turn? Billy Ray has made clear he has no one. Does a person in this situation become MORE religious or LESS? Rage against an unjust G0d or find comfort in the hope of an afterlife? Charles DeGaulle had a child with Down’s Syndrome. On her death at age 20 he said “now she is just like everyone else.” Is this what Billy Ray is thinking? That in death he will finally be the same as everyone else?
And what does this say about each of us in our lives? What does it say about the problems that we face, the things that might make us rage against some personal injustice? How might we see our various infirmities when cast in the shadow of a man who has lived more than half his life in constant pain, a man alone? The answer, of course, is obvious, eh?
The more subtle message is about people, having people. Having family, friends, people for whom one might choose to live. It’s very easy to understand the heroic efforts others make to survive in spite of the odds, despite the pain. Somewhere deep inside the will to live exists in the drive to live for others. The sadness I felt leaving the hospital and what haunts me is not so much Billy Ray’s decision but my complete and utter understanding of his decision.
Billy Ray gave lie to the heretofore truism that “no man is an island”.
Go out and build your bridges. Build the connections to others that will build your will to live. Live so that you will be alive for your others. Be alive so that your life will be more than something which hinges on nothing more than the switch that can be turned off. Live with and for others so that you, too, can understand not only Billy Ray but also those unnamed people who fight for every minute of a life.
Be more than alive. Live.
I’ll see you next week…
Posted by bingo at July 8, 2012 7:17 AM
Four Essential Things To Say Now
(With thanks to Ira Byock, M.D.).
I attended a talk yesterday on end of life care, the first in a lecture series honoring the friend I lost to cancer earlier this year. The talk was surprisingly moving, not only because it brought back memories of Ken but also because I will likely lose my Dad in the not too far future, and I thought of my folks throughout the talk. What the speaker discussed as end of life care and end of life preparations also offered a very important take-away that I will try to apply now, today, as if the end of life was nigh.
One should say 4 things often and with ease, not only in the course of completing a life’s work or concluding a life’s relationships, but in the course of living a life:
Please forgive me.
I forgive you.
Thank you.
I love you.
Sounds simple, huh? Maybe even a little trite. But each one of those little phrases is a bit of a minefield, each one laden with a hidden meaning and a back story, each one the mid-point in a little journey with a “before” you know, and an “after” you can’t possibly predict. There’s a little risk in that “after”, too, and that’s why those 4 little phrases aren’t really all that simple, and why considering this is not at all trivial. All 4 of those little phrases make you look outward, look at another, and in the stating they force you to put yourself at the mercy of that other. Each one of those phrases is a little opening in our guard, an invitation to accept or reject not only the sentiment but the sender.
I’ve spent the better part of 24 hours thinking about those 4 essential things and about how they fit in a life that is not necessarily concluding (at least I hope not!). We are, each of us, part of a tiny little ecosystem; thinking about using these phrases encourages us to look outward and see the others in our own worlds whether we are approaching the conclusion of a life or smack dab in the middle. How will my parents react if I approach this when I visit? Do they know it’s now the 5th act, that we are tying up all of the loose ends in the story?
How about my friends, my kids, my darling bride? Actually, without really knowing it I’ve been on this path for some years now, probably guided by Beth and her inherent goodness. Friends come and go; either way I’ll likely feel a sense of completeness in the relationship if I remember these 4 things. Patients and staff do, too. I think I’m a pretty good boss and pretty user-friendly for patients as far as specialists go. Bet I’ll be better at both if I’m thinking about these, even just a little bit, even now.
Please forgive me.
I forgive you.
Thank you.
I love you.
Don’t wait for the conclusion of your life to think about these.