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Part of living graciously is dying graciously - The Fucking Bluebird of Goddamn Happiness [entries|archive|friends|userinfo]
Zoethe

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Part of living graciously is dying graciously [Dec. 14th, 2011|12:57 pm]
Zoethe
First of all, let me reassure you all that I am not (to my knowledge) dying of anything at this time. I just had a physical and a bunch of tests and they all came back clean, so rest assured that I'm not writing this in anticipation of pending departure.

I am writing it because of an article I recently read about how doctors die, and how very often they make different, truly informed choices about their end-of-life care. That many times doctors will choose not to undergo invasive, painful treatment that has small hope of success and will, instead, choose to live out the remainder of their lives in quiet dignity, enjoying the time that they have remaining with their family and friends.

What a pity that more people aren't counseled toward that option. Even more, what a pity that the families of the terminally ill aren't supported in helping their relative make a choice that will allow them to retain their dignity and reach the end of their lives in a manner that is loving and positive.

Modern medicine has made amazing strides, and certainly I'm not scoffing at the notion of continued research toward effective treatment and cure of diseases like cancer. And I'm not saying that people who hear the "C" word should immediately update their will, make their funeral arrangements, and lay out their burial clothes. There are many cases where treatment is worth trying, and each patient should be fully informed of the treatment options and the likely prognosis.

But there comes a point when treatment is less about the patient's quality of life and more about the doctors making certain that they are safe from accusations of malpractice. When doctors offer patients treatments that they wouldn't accept themselves and to which they wouldn't subject their own family members. And it's hard for them to say, "you should consider stopping" because there is that one-in-a-fifty patient who does respond to this particular therapy, who does get better. No one can tell for certain who will be the lucky one who grabs the brass ring, so how can one counsel a patient that the horrible side effects of this particular treatment are not worth the small chance of winning the treatment lottery?

We want medicine to be better than it is. We want medicine to be miraculous in its ability to save us. We live in a world where we have overcome most of the diseases that used to kill us in childhood, where a minor wound doesn't present a serious risk of fatal infection, where a fever is unlikely to run out of control and damage our brains.

But we all still die. We don't do it with the regularity of the past--discounting accidents, we don't die in our youth or young adulthood very often--and we don't do it in our homes, among our own relatives, at least not usually. Thanks to the hospice movement, more of us are dying at home, but frequently not until our dignity has been shattered into a billion pieces and hospice is a method of trying to scrape back together some of that dignity and make some peace with the pain and anguish that would otherwise be our last memory of our loved one.

This is still not a very gracious way of reaching the end of our lives.

I hope it's a very long time before I have to make these kinds of decisions, for myself or for anyone else. I hope, really, that when death comes it is swift and painless. But if these decisions become ones that I have to make, I hope that I will make wise ones. Almost a quarter of medical expenditures in this country are made in the last year of life, and most of those expenditures have little impact on the final outcome--save to make that last year of life a sad, painful, miserable journey that leaves the grieving family with painful final memories.

Crossposting from Dreamwidth now. Sigh. If LJ won't let you comment, you can comment here: http://zoethe.dreamwidth.org/787304.html?mode=reply:
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Comments:
[User Picture]From: merle_
2011-12-14 06:13 pm (UTC)
What a pity that more people aren't counseled toward that option.

This. Exactly.

I am told I have a problem that will require invasive surgery followed by a lifetime of taking tons of pills with bad side effects. Odds of surviving the surgery are about 92% at the best hospital. Odds of living for over a year after that drop quite a lot. Ten year prognosis is maybe 10% for living. But, you know? They have no idea what is causing it. Invasive surgery is no more of a cure than leeches were given an unknown cause. And you know what else? I'm good with it. Better to burn out than to fade away. I'm fully functional at work and walk several miles a day, so figure their "you are going to die immediately" prognosis is slightly extreme.

Yet the doctors do keep pushing.
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[User Picture]From: zoethe
2011-12-14 06:19 pm (UTC)
I didn't realize you had such a problem. I admire your approach.
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[User Picture]From: aiela
2011-12-14 06:27 pm (UTC)
This is definitely something my sister deals with as her cancer metastisizes. When she was first diagnosed they told her that the average five year survival rate for people diagnosed with cancer as advanced as hers was 5%.

January will mark five years since her diganosis. Is she 'better'? No, but she made an educated, thought out choice to pursue aggressive treatment because she was young (not quite 42) and otherwise healthy.

Eventually, they will come back and tell her that the metastasized cancer has gone somewhere that they can't easily get at. And she knows at that point she's going to have to decide if going all out again will be worth it.

And I remind myself on a continual basis that when she decides it isn't, I need to support that, even if it means saying goodbye to my sister. Just as she needs to remind herself that she might not see the situation clearly, and she really needs to listen to what the people around her are telling her.

I just hope we can both approach that time graciously, for her sake.
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[User Picture]From: zoethe
2011-12-14 06:42 pm (UTC)
It was the same for my friend Annie. She was young, and wasn't expected to live two weeks. It was worth trying treatment, and she gained another year. She actually lived longer because we took her out of the hospital. But when she went down the third time, she made the decision that it was enough, and she died peacefully and gently.

It's never going to be easy, but it can be done with kindness and grace.
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[User Picture]From: alexmegami
2011-12-14 06:55 pm (UTC)
My maternal grandmother was diagnosed with lung cancer (not exactly unexpected, as she smoked from age 17 until at least her mid-70s, when her Alzheimer's made it impossible for her to remember how to smoke a cigarette at all).

The doctors asked my mother, since my grandmother was incapable of giving consent, what she wanted them to do. She said, more or less, "she's already dying, and she's not able to have it explained to her what would be happening. It would be terrifying for her. The potential of her living a few extra years isn't worth the pain it would cause her."

What made things worse was that my mother was going through her own chemotherapy when my grandmother died (ultimately of complications from pneumonia), so she couldn't even see her in her last three weeks of life.
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[User Picture]From: zoethe
2011-12-14 07:25 pm (UTC)
It's sad that she didn't see her mom in those last weeks, but having watched my ex's aunts keep their mom alive for years in a vegetative state, I would definitely say that your mom made the right decision.
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[User Picture]From: mariadkins
2011-12-14 07:42 pm (UTC)
What a pity that more people aren't counseled toward that option

That's one of the things that breaks my heart about Thomas. His paternal grandmother won't allow anyone to talk to him about giving himself over to state guardianship (which he needs) nor will she allow anyone to talk to him about creating a living will*. Even so, I did talk to him and show him the last time he was in the hospital what a living will is and does. So now he knows at least that much. Yes, he's mentally not all together, but for right now, he's over eighteen, he's his own gardian, and he has as many rights as the rest of us. My youngest son isn't speaking to me over the whole living will thing. It's all just a mess right now.

*I went so far as going through my living will and stating exactly why I want the things I want. Probably not necessary, but it made me feel better.

It's a pity that more people aren't counceled toward a lot of things.

what a pity that the families of the terminally ill aren't supported in helping their relative make a choice that will allow them to retain their dignity and reach the end of their lives in a manner that is loving and positive

I want that for Thomas so much. After all the bullshit he's been through, he deserves at least that much. Imho, those of us who are in my family and have nothing to do with Thomas' paternal family, mostly agree with me and think that Jane is being a selfish bitch and doing her grandson a grave disservice, in many ways with many things.

This is why I made Preston my healthcare surrogate, and if he's not available for some reason, that duty goes to his mother. Without the two of them, then I don't know what - because legally, Thomas is my legal next of kin*. My stepdad (eye roll) likes to tell everyone differently and would like to take over everything, but I have that document that won't let him touch me, thank the gods and all that's holy. *it's complicated; my mom and dad are still living, but my mom's parents adopted me, divorced, and her mother raised me, so neither one of my biological parents can be considered my next of kin.

I also have a very detailed will. I have nothing, really, but it's all outlined in the minutest detail I could manage. I created it when I filled out my living will and have since updated it; I need to get the updates notarized and into my files. Another thing my stepdad won't be able to control. Sucks to be him!! I'm such a meanie!

And we could extend your statement to the chronically ill, too. :)

Modern medicine has made amazing strides

It's been unreal what I've watched unfold since Thomas' kidney failure diagnosis in 2001.

And I'm not saying that people who hear the "C" word should immediately update their will, make their funeral arrangements, and lay out their burial clothes

My mom sure didn't. She swears a positive attitude and not allowing herself to be depressed pulled her through. The type of lung cancer she had comes with a 5% survival rate. She was diagnosed in September 1998 and was declared cancer-free in either 2000 or 2001.

There are many cases where treatment is worth trying, and each patient should be fully informed of the treatment options and the likely prognosis

This is why I love Thomas' current medical team. (well, i loved the gang in cincinnati, too!) They come in, and they tell you exactly how it is. "If you don't go on dialysis, you may or may not live another two or three months. If you do go on dialysis, you may or may not live to see thirty-five." It upsets his paternal grandmother, but I say tough luck. If she doesn't want to hear it, she doesn't have to be there.

how can one counsel a patient that the horrible side effects of this particular treatment are not worth the small chance of winning the treatment lottery?

Yeah. And therein lies the rub, such as it is.
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[User Picture]From: mariadkins
2011-12-14 07:42 pm (UTC)
oh jeez. i could have written my own post!
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[User Picture]From: halfmoon_mollie
2011-12-14 07:45 pm (UTC)
/scuse me for hijacking your thread. My brother was a hemophiliac who contracted AIDS through a blood transfusion. His liver was destroyed and the last three years of his life were hell. They were hell for him, and hell for his family. And at the very end of his life, he was admitted to the hospital in a great deal of pain. He was 40 not quite 41, as I said an HIV positive hemophiliac and THEY TOLD HIM THEY WERE GOING TO DO A LIVER TRANSPLANT. He fought with them. "For what? Give the liver to someone who has an actual chance of surviving?" He died just after they admitted him. A sad and painful journey, yes indeed. I know I would wish that he had just - *just!*- been made more comfortable at the end, and allowed to live out what was left with a little dignity.

Okay, sorry. And really glad to hear that you are okay.
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[User Picture]From: zoethe
2011-12-14 08:33 pm (UTC)
That's awful about your brother. Ferrett's Uncle Tommy was also a hemophiliac who contracted HIV through a transfusion. Miraculously, he never developed full-blown AIDs, and lived with it for almost 20 years.

The fact that they were offering your brother such dramatic measures at that point is part of the craziness I'm talking about. It's one of the reasons health care costs are so insane, as well.
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From: anonymousalex
2011-12-14 08:50 pm (UTC)
Sing it, sister, loud and frequently. This is one of those issues where I just don't understand how anyone can disagree, and yet they do. Nobody's saying "never do this thing," just "don't force me to do it if I don't want to."

I must either stop or write a book, so stop it is.

-Alex
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[User Picture]From: mariadkins
2011-12-14 09:22 pm (UTC)
write a book. i certainly did. LOL
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[User Picture]From: fortuna_juvat
2011-12-14 10:50 pm (UTC)
Hey, choir, preach it, etc.

Just today I had a long, Long discussion with a patient's mother and brother about their likely prognosis based on their very likely diagnosis of lung cancer on top of 40 years of heavy smoking and a new diagnosis of heart failure.

First, do no harm. We abide by it whenever we can, and trust me - it's not for lack of trying to counsel patients and families about the likely outcomes, we really do make our very best efforts. It's hard to guide people from "Mom was fine yesterday" to "Mom's condition is rapidly deteriorating and even though you never talked about it explicitly, we need you to help us make a decision on whether to put her on invasive, life sustaining therapies based on what you think she would have wanted"

That being said, I'm having DNR in large bold letters tattooed on my chest when the time comes.
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[User Picture]From: zoethe
2011-12-15 01:43 am (UTC)
I hear doctors talk like this, and it's heartening, but then I hear about people whose wishes are overridden with life-sustaining treatment, and I wonder how decisions are actually made.It's too uneven, and also sad.
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[User Picture]From: irishgalinabq
2011-12-14 11:31 pm (UTC)
I think it is a cultural thing. In Ireland, people are much more likely to choose the "enjoy life while it lasts" option. I was amazed at the lengths Americans will go to to keep elderly people alive. I have also seen some really awkward situations where the family who have been there for the whole illness, have accepted that all options have been exhausted and are willing to let the person go. Then one of their children will fly in from far away and upset the whole apple cart again.
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[User Picture]From: zoethe
2011-12-15 01:52 am (UTC)
Seeing the difference between the Irish side of my ex's family, who accepted death quietly, and the German side, who fought death in absolute terror, made me really appreciate that there are cultural differences.
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[User Picture]From: fallconsmate
2011-12-15 12:13 am (UTC)
Five years ago, the Mate and I were on that journey. Colon cancer that had metastasized into the liver, his colon was nearly blocked in two places.

Four months to the day from when he went into the hospital, he died. And he chose that death with my support. This time of the year is still glass shards to my heart, but I don't regret his decision to die comfortably, not at all. It was his life and his death, and if I love him, how could I beg him to stay on in pain? I love him too much for that. (I didn't stop loving him because he died, in my heart he still lives.)

It's a rough area. Some people can say "it's ok to let go" and some can't. TheEngineer and I have had the conversation, and he knows I don't want to stay in pain worse than what I struggle with now.

December 25th, 2:20 am eastern time. I can't forget.
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[User Picture]From: zoethe
2011-12-15 01:54 am (UTC)
I'm so sorry that this time of year was marred like that for you. But you gave him a wonderful gift.
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[User Picture]From: mariadkins
2011-12-15 01:22 am (UTC)
here's a bit of synchronicity.

http://finance.yahoo.com/news/how-to-die-the-right-way.html

it's about creating wills, planning, etc.
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[User Picture]From: zoethe
2011-12-15 01:55 am (UTC)
It's funny how those things work out.
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[User Picture]From: ratfan
2011-12-15 03:43 am (UTC)
Wow. I don't have such a decision to make yet, but I will. My mother has given me a copy of her living will which states that no extreme measures are to be made to preserve her life. There's a lot of detail and conditions but yeah, basically, it says if you know I'm dying, let it happen.

Right now I had to make a decision about Elliott; to give him a possibly dangerous drug which would improve his quality of life while he was here, but ultimately shorten it. Elliott has advanced respiratory problems and weakened limbs. At such time that Elliott is no longer enjoying life, I will give the direction for euthanasia. I can do this because Elliott is a rat. Crazy world, that you cannot do for humans what you would in a moment do for an animal in pain.
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[User Picture]From: zoethe
2011-12-15 12:19 pm (UTC)
It is, indeed.
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[User Picture]From: goaskalice71
2011-12-15 07:38 am (UTC)
I hate to comment and ruin a perfectly good 42, but I'm gonna do it anyways.

My father is a physician. Formerly a general surgeon (think mostly abdominal area-digestive track, colon, gall bladder, hernia repair, etc.). He closed his practice in the 90s to become a full-time Hospice pain management physician and eventually the medical director of a decent sized hospice company in SoCal. He is one of the first doctors to be board certified in pain management. My dad knows his stuff. :)

My father has Parkinson's. He is 77 years old. He could be spending his time working an exercise routine to help maintain or improve his dwindling muscle strength, but he chooses not to. At first I had a seriously difficult time grok-ing this. I mean, he knew all of the options available, why wasn't he trying them? Well, duh. He knows the likeliness of actually achieving a significant improvement in his quality of life. I still have a really hard time fully accepting this course of action, but it's his incredibly well informed decision to make. He knows all the possible treatments and outcomes and this is the course of action he has chosen for himself.

I get the need most doctors have to "cover your ass" by offering every possible, reasonable option and I also understand why when faced with the same situation themselves, they take the less arduous path.
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[User Picture]From: zoethe
2011-12-15 12:22 pm (UTC)
I just wish that more people had access to realistic information to make such informed decisions.
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[User Picture]From: nex0s
2011-12-15 04:07 pm (UTC)
Have you seen Ask A Mortician on youtube yet? My new favorite.

Caitlin, Your Mortician, has a website called The Order of the Good Death, and part of her mission is helping our culture reintegrate death in a healthy way. I'm a big fan.

And I sent her a link to the Doctors article :)

N.
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[User Picture]From: zoethe
2011-12-15 05:35 pm (UTC)
I haven't! I will look them both up. Thanks!
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[User Picture]From: soldiergrrrl
2011-12-15 06:06 pm (UTC)
I think we also need a paradigm shift in this country as well. We want to feel, at 90, like we did at 50 and that's not possible.

So much of the healthcare industry is focused on giving seniors a QOL that isn't sustainable because we have an unrealistic idea of what getting old means at this point.

If we could all learn that some day, yes, our bodies will wear out and that we will die, it would be easier I think, but we all seem so terrified of death.

Gah. Sorry. I'm wandering about in the head.
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[User Picture]From: zoethe
2011-12-15 06:55 pm (UTC)
No one likes the idea of getting old, and there is a good deal of it that we can put off thanks to the advances in health, but yes, eventually we do wear out. Pity that we treat it like disease.
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[User Picture]From: pachamama
2011-12-20 02:09 pm (UTC)
This. Thank you.
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