Psalm 39:4 "LORD, let me know my end, and what is the measure of my days; let me know how fleeting my life is! (RSV)
In a perfect world we live out the "measure of our days" in good health then gently fall asleep, never to wake again.
That's death via Norman Rockwell.
In the Norman Rockwell world 70% of Americans want to die at home. In the real world, only 30% do.
Last year Atul Gawande brilliantly described the emotional and factual cost of end-of-life care in his award-winning article, "Letting Go," published in the August 2, 2010 issue of The New Yorker. He dared to ask at what point medical treatments intended to extend life actually result in more intrusive treatments, more suffering and a greater financial burden on the patient's family.
The story - or what he called the 'dire reality' - was told through the life of a mother who had inoperable non-small cell lung cancer. She was young. She was hopeful. The unraveling tale of chemotherapy followed by increasingly intrusive interventions to counteract the side affects accumulated and spiraled down, one episode after another. How could her story have been changed? Could it have been? Can we direct the trajectory of our final months?
I believe we can.
You may find me off center, talking about death on the heels of a gracious holiday and in the advent of another. I do so because I fear death much less than unnecessary and unwanted care. Intubation. Chest tubes. Forced feeding. IV antibiotics to stave off this infection or that. CPR.
Hang around health care long enough and you'll find it won't take long before you find what you DON'T want. And if you live life on your terms, and pride yourself in doing so, you'll want to die on your own terms as well as much as is humanly possible. To do so you need to write it down.
"You only die once," Gawande wrote.
I also write this today because I've just returned from dealing with an 88-year old man who has not thought through his end-of-life issues. This has to do with how you want to live and be treated, not who will handle the funeral. He has an opposite problem from the young women Gawande wrote about; who so wanted to live she couldn't understand death was near.
My father-in- law still thinks he'll always drive his car and take care of himself. He never considered there might be a point where he couldn't. And the rest of us, his children by biology and marriage, are left deciding the issues for him. Things he used to care about, like filling the bird feeders before the winter winds hit, or making sure the water softener has been cleaned out, are immaterial now. He moves from his bed, to the kitchen table to his lounge chair, where he quickly falls asleep. He doesn't think he's dying either, but his mind diminishes by the day. It's too late for him.
We all need to make our wishes known. Or someone else will. Write your own last chapter. Outline it. Think it through and write it down. It's your life and it will - hopefully much later rather than sooner - be your death. November, if you didn't already know, is National Hospice and Palliative Care Month. In this incredible video, Engage With Grace posted by Renee Berry, speaker Alexandra Drane encourages all of us to answer these five questions:
Five simple questions:
1) Where do you fall on the medical spectrum: from supportive and comfort care only to take all measures possible?
2) If there were a choice, would you prefer to die at home, or in a hospital?
3) Could a loved one correctly describe how you'd want to be treated in the case of a terminal illness?
4) Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?
5) Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advance directive?
Cancer and its treatment teach you about mortality. It can leave you feeling powerless. Turn the table and empower yourself. By determining what you don't want you very well might define how strongly, how vividly, how incredibly, you are living your life today.
All good things to you,
Jody
That's death via Norman Rockwell.
In the Norman Rockwell world 70% of Americans want to die at home. In the real world, only 30% do.
Last year Atul Gawande brilliantly described the emotional and factual cost of end-of-life care in his award-winning article, "Letting Go," published in the August 2, 2010 issue of The New Yorker. He dared to ask at what point medical treatments intended to extend life actually result in more intrusive treatments, more suffering and a greater financial burden on the patient's family.
The story - or what he called the 'dire reality' - was told through the life of a mother who had inoperable non-small cell lung cancer. She was young. She was hopeful. The unraveling tale of chemotherapy followed by increasingly intrusive interventions to counteract the side affects accumulated and spiraled down, one episode after another. How could her story have been changed? Could it have been? Can we direct the trajectory of our final months?
I believe we can.
You may find me off center, talking about death on the heels of a gracious holiday and in the advent of another. I do so because I fear death much less than unnecessary and unwanted care. Intubation. Chest tubes. Forced feeding. IV antibiotics to stave off this infection or that. CPR.
Hang around health care long enough and you'll find it won't take long before you find what you DON'T want. And if you live life on your terms, and pride yourself in doing so, you'll want to die on your own terms as well as much as is humanly possible. To do so you need to write it down.
"You only die once," Gawande wrote.
I also write this today because I've just returned from dealing with an 88-year old man who has not thought through his end-of-life issues. This has to do with how you want to live and be treated, not who will handle the funeral. He has an opposite problem from the young women Gawande wrote about; who so wanted to live she couldn't understand death was near.
My father-in- law still thinks he'll always drive his car and take care of himself. He never considered there might be a point where he couldn't. And the rest of us, his children by biology and marriage, are left deciding the issues for him. Things he used to care about, like filling the bird feeders before the winter winds hit, or making sure the water softener has been cleaned out, are immaterial now. He moves from his bed, to the kitchen table to his lounge chair, where he quickly falls asleep. He doesn't think he's dying either, but his mind diminishes by the day. It's too late for him.
We all need to make our wishes known. Or someone else will. Write your own last chapter. Outline it. Think it through and write it down. It's your life and it will - hopefully much later rather than sooner - be your death. November, if you didn't already know, is National Hospice and Palliative Care Month. In this incredible video, Engage With Grace posted by Renee Berry, speaker Alexandra Drane encourages all of us to answer these five questions:
Five simple questions:
1) Where do you fall on the medical spectrum: from supportive and comfort care only to take all measures possible?
2) If there were a choice, would you prefer to die at home, or in a hospital?
3) Could a loved one correctly describe how you'd want to be treated in the case of a terminal illness?
4) Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?
5) Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advance directive?
Cancer and its treatment teach you about mortality. It can leave you feeling powerless. Turn the table and empower yourself. By determining what you don't want you very well might define how strongly, how vividly, how incredibly, you are living your life today.
All good things to you,
Jody
13 comments:
You raise such an important topic written with such thoughtfulness and grace. It's hard to consider these issues and have the discussions. But by doing so, it can actually provide a general roadmap that patient/caregivers/loved ones often need to feel in control and to have confidence in the tough choices that need to be made.
Thank you,
Karen
WhatNext.com
Another beautifully written, thoughtful post. Thanks Jody for writing with such sensitivity and wisdom about such an important and difficult topic. Lots to think about.
Thank you!
Liza
@itsthebunk
Beautiful, Jody. Thanks for being brave enough to bring this up, and doing so with such grace.
Katie
Thanks Jody. We need to encourage dialogue on death and dying. I have terminal cancer. Please check out my blog at dyingdigitally.com
Doug
Society seems to have such a tough time dealing with end of life issues, or even talking about it really. It's hard, but that doesn't mean we shouldn't do it. Thanks for writing about it. This topic needs discussion.
I'm hoping Blogger won't toss me into comment limbo again...
Wow, Jody, we must be having a mind meld or something. I've been thinking of this very subject quite a lot over the past few weeks. It may be because I am one of those people who work in healthcare, often with people who are at the end of their lives, and witness the needless misery and confusion that arises when they do not make these sorts of decisions before it's too late.
I've also been thinking about it for myself -- to update my choices and to go beyond them, so that when I die, I don't leave some unholy mess behind that my loved ones would find it nearly impossible to wade through. It's a real challenge. I'm hoping to write a post about it myself. It's a tough & complex issue, to plan one's exit and the aftermath of one's exit from this life, but it's also an act of tremendous generosity to those we love.
Thank you for this. xoxo
Thank you all for your thoughts and comments. It's not easy thinking about end-of-life issues, but once you pass the hurdle of thinking about it and get your thoughts on paper you'll be glad you did so.
jms
Great information and questions that need to be faced. Getting it all written down is key! Thank you for writing this!
Jody,
This is a powerful, excellent posting -- and very necessary, given the poor quality of our healthcare system. I, for one, don't want to die in a hospital.
You raise great points, and I am working on putting a will together, as well as documenting how I want to be treated during my end of life.
You are right: it's time we take control of our destiny.
Your posting really hit home with me because my dad got into a car accident recently (he's fine, but the car was totalled), and now we have to face the reality that he may not be able to drive again.
Jody, as the others have said, your post is very powerful and a subject that is so often left unsaid. Even among those with cancer. The inevitable just seems so unbelievable. It's difficult to face something we don't want to see, but you're right. It needs to be done. Thanks for this special post.
Your comments, here and in separate email messages, indicate how important it is to get these essential conversations moving.
I also want to direct you to a wonderful group of professionals I met on twitter - the #HPM group, started by @CTSINCLAIR - a physician specializing in palliative care, and my friend @renee_berry, an advocate for hospice and palliative care. We connected immediately on Twitter and I had the great opportunity to meet her this past September at Stanford.
She helps host a tweetchat for the #HPM group on Wednesdays at 8 pm CENTRAL time.
Very thankful that you brought this up. I plan to start on this as part of my New Year planning.
Nice links shared. I had a nice read. Whatever happens life has to go. So don't loose hope.
Your courage is our inspirations.
So do stay in touch and keep writing strongly.
cancer center of philadelphia
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