More sermon prep.
Jun. 23rd, 2010 11:49 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
rivkaMy sermon draft is already 2000 words long and I'm just developing the religious theme now. I've decided to carry it through to the end and then make drastic cuts, instead of trying to shorten it as I go. There's a lot that I know and believe and think that doesn't need to make it into the sermon. I'm pretty sure I'll have to get all of it said before I can figure out which pieces are sermon-shaped.
I'm going to keep posting bits. Feel free to disagree or ask questions or, you know, flounder with the issue; it helps me formulate my thoughts. At this point it's probably not useful to tell me what you think I should leave out or to comment on matters of style. I'm not there yet. I'm just getting it all out.
2. David Kissane and therapy for the dying.
I’m going to admit straight up that I didn’t know what I was doing when I worked with Ray. I knew how to treat depression, but I didn’t know how to do it without the promise of a better life afterward. Ray lived much, much longer than the doctors predicted – perhaps because he willed himself to; I don’t know – but I couldn’t do all the things I knew how to do: entice him with visions of useful work, fun, social relationships, romance, once the shadow of depression was lifted. Even when he was better he was still dying. Ray and I had to grope our way through that without an instruction manual.
A year or so after Ray’s death I went to a conference about psychosocial aspects of cancer care and I heard a presentation by an Australian psychiatrist named David Kissane. Dr. Kissane identified a set of symptoms that are common among persons with terminal illness: hopelessness, the loss of a sense of meaning in life, a feeling of powerlessness, fear of loss of dignity, fear of burdening others. He called these symptoms "demoralization syndrome:" loss of morale on the profoundest level. These feelings of hopelessness and powerlessness, he said, inevitably resulted in a desire to die or to commit suicide.
These feelings of demoralization – hopelessness, powerlessness, fear of losing dignity – may seem to some to be intrinsic to the process of dying. Of course, if you’re dying, why wouldn’t you be demoralized? But in fact, not everyone is. And second: Dr. Kissane was able to develop a psychotherapy that successfully treated demoralization syndrome. It was specifically designed to help people reflect on the meaning of their life and on their legacy – and we’re not necessarily talking about anything huge; I remember that he said, "for some people, it’s that they have a really good borscht recipe, one they want to hand down to their family." He would help people craft a sense of their legacy, his assistants would write down what they came up with, and they’d make it into a beautiful little book and present it to the dying person, so they could share their legacy with their families and friends.
And the thing is: repeatedly, he found that this kind of psychotherapy cured people of the desire for assisted suicide.
3. So...
So it turns out that terminally ill or severely disabled people who want to commit suicide aren’t actually different from anyone else who wants to commit suicide. They are suffering. Their suffering is responsive to treatment. And when they receive appropriate treatment, they lose the desire for suicide.
What does this mean for the assisted suicide movement?
And why did it take so long – some thirty years after the assisted suicide movement began – for anyone to study ill people who wanted to die and figure out what was wrong with them, and what could help them want the time they had remaining? Why weren’t those obvious questions from the start?
4. Things I know about suicide.
I started talking around in my social circle about this sermon I was going to give, and someone said to me very earnestly: “Rebecca, what you may not realize is that I’ve talked to some of these people and they do genuinely want to die. They have logical reasons.”
I don’t think she knew what I do in my work life. I’m not a licensed psychologist – I do clinical research instead – but over the years I have talked to many, many suicidal people, and they always have reasons. Their reasons are always compelling to them, and sometimes they are persuasive enough that they sound pretty compelling to me too. It was for good cause that psychiatrist Aaron Beck said in his famous treatment manual for depression that if you ever find yourself agreeing that your client’s situation is hopeless, it’s a sign that you’ve gotten sucked into their irrational thinking.
I know some things about suicidal people. One of the things I know is that you will never meet a suicidal person who is completely unconflicted, completely lacking in ambivalence. That’s because people like that are already dead before you have a chance to meet them. Anyone who lets another person know that they are suicidal, however certain they may sound, is ambivalent. There’s a part of that person – perhaps just a small part, a weak part – that wants to live. There’s a part of that person that wants to be rescued.
My job, when I meet a suicidal person, is uncomplicated. It is my job to stand with the part of the person that wants to be rescued.
I say “uncomplicated” although of course sometimes actually carrying out that job can be enormously complicated. What is uncomplicated is the part about knowing where my allegiance should be. I don’t try to wade into the person’s situation and figure out whether their problems are in fact hopeless. I don’t try to figure out, from what they are able to tell me about their prospects, whether their life is really worth living or whether they would be better off dead. The law, my professional ethics, my experience, and my personal values all tell me that my allegiance must be with life. That part is uncomplicated.
5. Suicidal dying or disabled people are different.
When the issue of assisted suicide comes up, I talk about the suicidal people I have known. "How come no one says my patients should be allowed to kill themselves? People who are mentally ill, people who are overwhelmed by horrifying life events – where is the assisted suicide movement for them?" Then people get annoyed with me: "Terminally ill and disabled people are different."
How are they different? Why is it that there is literally no disaster, no tragedy, no collection of problems so severe that our society argues that a person ought to be allowed to die rather than suffer them – EXCEPT for physical disability, physical helplessness? What makes being seriously ill or disabled different from every other bad thing that a person could possibly experience?
I’m going to give you a minute here to struggle with that question.
I'm going to keep posting bits. Feel free to disagree or ask questions or, you know, flounder with the issue; it helps me formulate my thoughts. At this point it's probably not useful to tell me what you think I should leave out or to comment on matters of style. I'm not there yet. I'm just getting it all out.
2. David Kissane and therapy for the dying.
I’m going to admit straight up that I didn’t know what I was doing when I worked with Ray. I knew how to treat depression, but I didn’t know how to do it without the promise of a better life afterward. Ray lived much, much longer than the doctors predicted – perhaps because he willed himself to; I don’t know – but I couldn’t do all the things I knew how to do: entice him with visions of useful work, fun, social relationships, romance, once the shadow of depression was lifted. Even when he was better he was still dying. Ray and I had to grope our way through that without an instruction manual.
A year or so after Ray’s death I went to a conference about psychosocial aspects of cancer care and I heard a presentation by an Australian psychiatrist named David Kissane. Dr. Kissane identified a set of symptoms that are common among persons with terminal illness: hopelessness, the loss of a sense of meaning in life, a feeling of powerlessness, fear of loss of dignity, fear of burdening others. He called these symptoms "demoralization syndrome:" loss of morale on the profoundest level. These feelings of hopelessness and powerlessness, he said, inevitably resulted in a desire to die or to commit suicide.
These feelings of demoralization – hopelessness, powerlessness, fear of losing dignity – may seem to some to be intrinsic to the process of dying. Of course, if you’re dying, why wouldn’t you be demoralized? But in fact, not everyone is. And second: Dr. Kissane was able to develop a psychotherapy that successfully treated demoralization syndrome. It was specifically designed to help people reflect on the meaning of their life and on their legacy – and we’re not necessarily talking about anything huge; I remember that he said, "for some people, it’s that they have a really good borscht recipe, one they want to hand down to their family." He would help people craft a sense of their legacy, his assistants would write down what they came up with, and they’d make it into a beautiful little book and present it to the dying person, so they could share their legacy with their families and friends.
And the thing is: repeatedly, he found that this kind of psychotherapy cured people of the desire for assisted suicide.
3. So...
So it turns out that terminally ill or severely disabled people who want to commit suicide aren’t actually different from anyone else who wants to commit suicide. They are suffering. Their suffering is responsive to treatment. And when they receive appropriate treatment, they lose the desire for suicide.
What does this mean for the assisted suicide movement?
And why did it take so long – some thirty years after the assisted suicide movement began – for anyone to study ill people who wanted to die and figure out what was wrong with them, and what could help them want the time they had remaining? Why weren’t those obvious questions from the start?
4. Things I know about suicide.
I started talking around in my social circle about this sermon I was going to give, and someone said to me very earnestly: “Rebecca, what you may not realize is that I’ve talked to some of these people and they do genuinely want to die. They have logical reasons.”
I don’t think she knew what I do in my work life. I’m not a licensed psychologist – I do clinical research instead – but over the years I have talked to many, many suicidal people, and they always have reasons. Their reasons are always compelling to them, and sometimes they are persuasive enough that they sound pretty compelling to me too. It was for good cause that psychiatrist Aaron Beck said in his famous treatment manual for depression that if you ever find yourself agreeing that your client’s situation is hopeless, it’s a sign that you’ve gotten sucked into their irrational thinking.
I know some things about suicidal people. One of the things I know is that you will never meet a suicidal person who is completely unconflicted, completely lacking in ambivalence. That’s because people like that are already dead before you have a chance to meet them. Anyone who lets another person know that they are suicidal, however certain they may sound, is ambivalent. There’s a part of that person – perhaps just a small part, a weak part – that wants to live. There’s a part of that person that wants to be rescued.
My job, when I meet a suicidal person, is uncomplicated. It is my job to stand with the part of the person that wants to be rescued.
I say “uncomplicated” although of course sometimes actually carrying out that job can be enormously complicated. What is uncomplicated is the part about knowing where my allegiance should be. I don’t try to wade into the person’s situation and figure out whether their problems are in fact hopeless. I don’t try to figure out, from what they are able to tell me about their prospects, whether their life is really worth living or whether they would be better off dead. The law, my professional ethics, my experience, and my personal values all tell me that my allegiance must be with life. That part is uncomplicated.
5. Suicidal dying or disabled people are different.
When the issue of assisted suicide comes up, I talk about the suicidal people I have known. "How come no one says my patients should be allowed to kill themselves? People who are mentally ill, people who are overwhelmed by horrifying life events – where is the assisted suicide movement for them?" Then people get annoyed with me: "Terminally ill and disabled people are different."
How are they different? Why is it that there is literally no disaster, no tragedy, no collection of problems so severe that our society argues that a person ought to be allowed to die rather than suffer them – EXCEPT for physical disability, physical helplessness? What makes being seriously ill or disabled different from every other bad thing that a person could possibly experience?
I’m going to give you a minute here to struggle with that question.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2010-06-24 04:19 am (UTC)I draw the line at the point where the person has lost control of bodily function in a non-responsive state. The "someone else has to take over" point. If the person still has agency and actively seeks death...to me that is "assisted suicide." Is that the definition?
Background: My grandmother had terminal cancer. She was given a few months to live when I was about 4. She was given supportive services such as a visiting "nurse" who attended to keeping her sane and giving her companionship. Gladys helped all of us understand what grandma was going through and helped grandma by providing a link to the outside world. I'm not sure if she was given any other psych support. Long story short...my grandmother lived until I was about 12 or 13. Mom came home at one point and sat my brother and I down...asking us (yes, the 12 year old and the 9 year old) if we would understand if she had to decide to take grandma off life support. We did. I've always advocated living by a person's wishes for DNR or other end of life things. I'm conflicted on "assisted suicide" but willing to debate it and understand it.
no subject
Date: 2010-06-24 10:59 am (UTC)"Assisted suicide" is having someone else perform a positive action that leads directly to your death. It is not the same as having a DNR (do not resuscitate) order, which means "if I'm dying, don't stop me. Let nature take its course." It is not the same as withdrawing your consent to ongoing medical treatment such as artificial respiration or nutrition.
I think people have the right to refuse medical treatment, although there are certainly cases in which it's most appropriate to see psych involved, as when a new quadriplegic says "I'd rather die than live on a respirator - disconnect it." What people don't have the right to do, in my opinion, is ask society to get involved in the business of whose life is worth living and whose life isn't.
no subject
Date: 2010-06-24 11:56 am (UTC)no subject
Date: 2010-06-24 04:45 am (UTC)1. I have a number of friends who are disabled in some way, or chronically ill. I also have a number of friends who struggle regularly with severe depression. (These are generally not people who are refusing medication or who have gone off their medication; these are people for whom antidepressants don't work well, or don't work consistently.) The friends with severe depression suffer so much more than the friends with disabilities. My friends with fibromyalgia who live with chronic pain seem to live much better lives, overall, than my friends with intractable depression. Even when they're in a flare. In terms of day-to-day suffering, depression WINS. (Or loses. You know.)
And yet there seems to be a strong sense among assisted suicide advocates that it is not OK to allow severely depressed people to commit suicide, even if they have depression that has proved unresponsive to medication. Even if their depression is unresponsive to medication and to ECT.
2. I feel a great deal of sympathy for end-stage cancer patients, and for those who've seen end-stage cancer patients that were not being medicated adequately who are terrified of dying that way. But I've seen arguments for assisted suicide where people say things like, "there is no pain medication to deal with loss of dignity; becoming incontinent (or having to be fed or being physically dependent on others in some significant way) is utterly intolerable for me to contemplate." The ableism in a statement like this is appalling to me. I think ableism makes it really easy for able-bodied people to see it as reasonable for a disabled person to want to die, rather than realizing they've been sucked into an irrational world view.
3. I would really like to read more about the therapy for dying people; my grandmother is not terminally ill, but she is old and increasingly feeble, and definitely suffers from that sense of a lack of meaning, fear of being a burden, etc. Are there any books about this for a lay audience?
no subject
Date: 2010-06-24 11:31 am (UTC)Yes. Absolutely this. I am planning to develop that theme.
no subject
Date: 2010-06-24 03:25 pm (UTC)no subject
Date: 2010-06-24 04:02 pm (UTC)A capable person who expresses a wish for suicide gets mental health treatment. Forced, if necessary. It's only for disabled people that we entertain the notion that perhaps they have the right to kill themselves. With approval and help.
no subject
Date: 2010-06-24 04:06 pm (UTC)no subject
Date: 2010-06-25 11:00 am (UTC)1. Most suicidality is not rational, although some cases may be rational.
2. If some suicides are to be socially/legally permitted or assisted, there will need to be some method for determining whether or not the suicidal person is making a rational choice.
3. There's no way to make that determination objectively; the process would inevitably be contaminated by prejudices and assumptions about what makes a life worth living.
4. So the only safe ground is to say that we won't permit anyone to commit suicide.
5. Some people will be determined enough to do it anyway, but at least this way we're not putting a stamp of social approval on the idea that lives like theirs have no value.
no subject
Date: 2010-06-25 11:12 am (UTC)no subject
Date: 2010-06-25 11:27 am (UTC)no subject
Date: 2010-06-25 11:35 am (UTC)no subject
Date: 2010-06-25 12:56 pm (UTC)For psychosocial and medical problems, or just medical ones?
no subject
Date: 2010-06-25 01:00 pm (UTC)I'm not going to be able to continue this today because I'm getting more sucked into my prodromal labour so I can't give it the thought it needs.
no subject
Date: 2010-06-29 04:43 am (UTC)In one sense, this is one of the stronger arguments *against* assisted suicide. It creates a situation in which compassion and a desire to end suffering says "so, let's kill this person," instead of "let's figure out what we can do to help this person."
Then again, I also know that there are situations in which there's an ugly mix of things. If there's no time for anything fancier for pain relief, it's possible that opiates sufficient to kill the pain will also depress respiration enough to cause death.
But I'd rather have a doctor trying to stop the pain and hasten death, rather than explicitly trying to hasten death to stop the pain.
no subject
Date: 2010-06-24 06:33 pm (UTC)Wow. Yes. We (UUs especially) want so desperately to rely on reason and independence in this issue, but we can forget all about the subjectivity of it.
[sorry, random self-disclosure ahead...]
I've been really struck lately with how context laden my feelings about my own life are. A few months ago I was driving when I had to avoid a car suddenly and a totally unfamiliar thought flew through my mind: "Careful!" it said. And it was like the word was wrapped in a bubble of something I don't remember ever experiencing before. I felt valuable. I felt like I had to be careful with my life because my life has value now that Lyn is pregnant and there are babies on the way. I don't mean to be melodramatic or weird by saying this, but this is a sentiment that I literally do not remember ever having before. Ever.
And yet there have been hundreds of moments in my life when I felt like my life wasn't worth anything; that my absence was worth more than my life. If someone—anyone—outside of myself had been right there saying "yeah, you're right about that," there's zero chance I would be alive right now.
The thing is those moments almost always FEEL rational. It feels like math: I am worth X, not dealing with my shit is worth Y, it's a simple equation. When I have stopped myself it's because some part of me understood that—if not for me, at least for others—X might be a little bigger than Y. I think having Final Exit there would be like taking a math test and writing X is less than Y, being in the middle of checking my work and having the teacher take it out of my hands and give it back to me with an A on it.
(But ask me again when I'm in the midst of a depressive episode, and I'll say something pretty different. Our minds are more elastic than we believe.)
By the way: I don't know if I've said to you in person how glad I am that you're doing this. It's led me to challenge my own assumptions and think about this issue in a far deeper way than I ever have. Thank you.
no subject
Date: 2010-06-24 09:03 pm (UTC)The thing is those moments almost always FEEL rational. It feels like math: I am worth X, not dealing with my shit is worth Y, it's a simple equation. When I have stopped myself it's because some part of me understood that—if not for me, at least for others—X might be a little bigger than Y. I think having Final Exit there would be like taking a math test and writing X is less than Y, being in the middle of checking my work and having the teacher take it out of my hands and give it back to me with an A on it.
Yes, exactly this. This is such a clear way of putting it. I know you really understand the fragility and ambivalence of that moment, and how easy it would be to push someone in the direction of death.
(By the way: your value is approximately 643 zillion, by my calculation. Even without Lyn and the babies depending on you.)
no subject
Date: 2010-06-24 05:36 am (UTC)Wouldn't it be awfully tempting for a person with my feelings and a little less self-awareness to project those feelings on the dying person? Maybe the relatives of the dying people need some mental health care too.
no subject
Date: 2010-06-25 11:08 am (UTC)When hospice is involved (in a hospice center or at home) I think they try to have a major focus be on supporting the feelings of the family. That's often not available to everyone, though. Dr. Kissane's newest work seems to involve a family therapy focused on grief and bereavement, which starts when the dying person is still alive. That seems like it would be a very good thing.
no subject
Date: 2010-06-24 06:01 am (UTC)I am in favor of patients and their families having the right to refuse resuscitation, intubation, and tube feedings. But, with Alzheimers, by the time any of those refusals can affect the outcome, the person inside may have been gone for years.
(My grandmother was diagnosed with Alzheimers more ten years before she died; she spent years in a hospital bed in a near-vegetative state. She was never tube-fed; she survived that long because everything below the brainstem was in excellent condition, and she retained the ability to swallow when food was placed in her mouth. But she, the person, had been gone for years before her body finally followed.)
no subject
Date: 2010-06-24 08:13 am (UTC)no subject
Date: 2010-06-24 11:29 am (UTC)The thing is - and this is going to sound more brutal than I want it to sound - if he wants to kill himself, there's no realistic way for anyone to stop him. If he wants to wait a while longer and kill himself when he starts to notice large decrements in his function, there's no realistic way for anyone to stop him from doing that, either.
What I don't think he should be able to have is the right to ask other people to make a determination that his life is no longer worth living, and to then kill him. Especially because in the case of dementia we're talking about someone who would be past the point of being able to consent.
(No, I don't think you should be able to consent in advance. Millions of people would tell you that they would never, ever want to live if they had to be in a wheelchair full-time, but that turns out not to be the case when people who actually suffer severe accidents.)
I think this is a particularly hard problem for geeks because we put so much of our personal value - like, all of it - on our mental capacities. That's where our self-worth comes from, so it seems rational to us to say that life would no longer be living without them.
no subject
Date: 2010-06-24 11:54 am (UTC)There was a couple locally here recently who killed themselves in their back garden, because they were going to have to go into a care home, and living in a care home they wouldn't be able to choose when their condition was unbearable to them any more - but they also couldn't bear the idea of their children having to care for them as their condition got worse and worse even if they (the elderly parents) were so far beyond meaningful cognitive function that they didn't care any more. The woman here with ME who has spent a lot of time in court over it has a similar argument - she doesn't want to die while she still has enough control over her body and mind to obtain means and carry it out, but as the law stands she has to do it then or put up with the risk of living on past the point at which she finds things bearable, because even if her partner could bear to do it she doesn't want him arrested for murder.
On the other other hand, I have also read about a woman who promised her mother to help her die if she got severe Alzheimers, but hasn't done it because her mother is absent but perfectly happy, even if she's not the same personality any more.
no subject
Date: 2010-06-24 02:54 pm (UTC)no subject
Date: 2010-06-24 03:12 pm (UTC)no subject
Date: 2010-06-24 03:32 pm (UTC)ah! this makes perfect sense to me.
i myself worry about pain, and how the war on some drugs is screwing up the ability to get pain management, and how i can see myself getting to a point where i'd like some options.
but fuck if i want anyone making that decision for me.
no subject
Date: 2010-06-24 11:14 am (UTC)But it also terrifies me to wonder how we, as a society, would go about making rules about how much higher mental function someone needs to have in order for it to not be okay for someone to kill that person.
I think Alzheimer's disease is a bad example because someone who is that far gone is hardly able to make a decision to commit suicide. The discussions wind up being more about what I guess I'd call "assisted homicide" - at what point do your caregivers get to decide that there's nothing left worth keeping? That's a very, very different question.
And I say that with all kinds of respect and empathy for people who are caregivers of Alzheimer's patients, which is right up there on my personal nightmare list and is manifestly recognized by psychologists as one of the most stressful of human experiences.
(I'm sorry, this icon is manifestly inappropriate for the topic. I just couldn't resist using it in response to yours.)
no subject
Date: 2010-06-24 12:57 pm (UTC)That's how things fell out with my mother (terminal cancer). As long as she was mentally with us, she wanted to stay with us. Once she was mentally gone, my dad was absolutely not going to take any measures without her consent - I don't know if she'd given him advanced consent or not. But I think they did discuss it and she knew he wouldn't do anything without her present consent.
It was a very long and awful month, especially for my parents, but I think it was the right thing to do.
no subject
Date: 2010-06-24 01:44 pm (UTC)My FIL has Alzheimer's. I imagine the brain on Alzheimer's as being kind of like a grid of office mailboxes. Some of the boxes in that grid are still stuffed full (in FIL's case, his verbal ability, his sense of humor, and his awareness of what's happening to him: those are all intact. Also, while his short-term memory is impaired, it's actually not noticeably more impaired than most older adults'). Other boxes once held things that are now just GONE. His ability to do simple math: gone. To find things (like the refrigerator; his caregivers say that he'll wander into the kitchen and stand there, puzzled, unable to recognize That Thing the Food Comes From) -- gone. In FIL's case, the missing stuff makes him unable to live independently; however, the bits that are still there make him still him.
Here is the important bit.
The utterly bizarre thing about Alzheimer's in our society is that on one hand, there is this widespread sense that it is totally reasonable to want to kill yourself if your mind is going. While at the same time, there is this tremendous emphasis on keeping the Alzheimer's patient safe even if it means taking away their freedom.
FIL clearly couldn't live independently anymore. He desperately did not want to live in assisted living. In part this was because he knew that in assisted living, he'd be locked up. For "memory care" patients they have a system called Wanderguard, where they can lock the door and "redirect" you if you try to leave. FIL likes to go on walks. He tends to get lost. If he stays on his own street and just goes out and back, he can make it back, but if he deviates at all, he gets lost, and at some point he's also going to lose the ability to find his way back even on that straight street.
Society's solution to confused old people is to lock them up. There is a tremendous amount of pressure on the next of kin (my husband, in this case) to take whatever steps are necessary to keep them safe. Alzheimer's is a terminal illness! I mean, locking up an aware and resisting (though confused) dementia patient to keep them safe seems kind of like forcing some invasive and painful surgery on a person with terminal cancer, something that will radically decrease their quality of life even if it buys them some extra time.
We were really goddamn lucky in that FIL had a pair of long-time friends who said that they would act as his caregivers in exchange for free rent. It has worked out as a win-win. He is not confined. We have all made the conscious decision that while we will try to keep an eye on him (he carries a cell phone with a tracker, for instance) we're not going to treat him like a prisoner or a two-year-old, either, and if that means he wanders out some night at 4 a.m. and accidentally freezes to death, that is a risk we're willing to take. Because we know that he prefers freedom over safety and we know that's what we would want in his situation.
My husband once pointed at a sign saying "DEAF CHILD" and said, "it's too bad they don't have signs like that for people like my dad. CONFUSED OLD PERSON or something like that." I said it's because it's understood that deaf children may be out and about, whereas society's solution to FIL is that we're supposed to lock him up.
Anyway. It's a weird contradiction, that it's seen as the worst thing that could ever happen to you but GOD FORBID YOU ACCIDENTALLY GET HIT BY A CAR, YOU NEED TO BE LOCKED UP.
no subject
Date: 2010-06-24 03:28 pm (UTC)no subject
Date: 2010-06-24 03:50 pm (UTC)But you could use that same logic to imprison blind people (they might not see the car coming!) and certainly to confine harmless but actively crazy people, and yet we've generally grasped that "least restrictive environment" is the goal with the mentally ill, and that blind people get to make their own choices about risks vs. safety.
no subject
Date: 2010-06-24 03:54 pm (UTC)no subject
Date: 2010-06-24 02:58 pm (UTC)no subject
Date: 2010-06-25 01:24 am (UTC)Humans do not equal animals. We're rational creatures (mostly) who think and are, for lack of a better word, sentient. However, animals are many times just as loved (if not more in some cases) a member of the family ("pack") as a person. I called my two with Mike my "step dogs" because they were just as loved as any child I've seen. Note: I think animals deserve pallative care if possible...however, I do see the utility of euthanization when the animal could become a harm to society if the pain becomes too great (i.e. the dog starts lashing out and biting folks...which I've witnessed).
Is there anything that can be understood from animal euthanization that would illuminate "human euthanization"? (If this is going off on some tangent you are not wanting to go on, just tell me...)
no subject
Date: 2010-06-25 02:10 am (UTC)Some articles he wrote as he was writing the book are online and I think this one might give you some thoughts for your sermon (if you need any):
http://v1.theglobeandmail.com/v5/content/features/focus/boyinthemoon/
In his search he actually goes to France to spend some time in one of the Jean Vanier L'Arche communities (another author to check out if you haven't already- Becoming Human is really a great Christian text).
Anyways the reason I bring all this up is that the willingness to assist suicide of people who are seen as disabled while NOT extending the same thinking to able, depressed people really does I think come most profoundly at the question of the value of a life that does not conform to any of the usual parameters of success. And both those authors address it really well (and differently). I wish I'd thought to recommend them sooner.
It's Vanier's position that peace only comes when people are valued for who they are whatever their capacities and given support in finding their own joy and light in the world.
He sees accepting help as really hard, but really critical in spiritual development. And he says that one reason we're uncomfortable with differently-abled people is because we think we could never live needing all that help. And we assume that if you need help, you can't give. And then he kind of turns all that on its head.
Coming at this discussion as a parent who has taken her infant off life support (not the same, I agree, as taking an action), I have to say that I think about it every day. I think I made the right decision given everything. But at the same time I feel it's very important for me to still live with doubt about it because it was such a profound moral decision and it should be unsettling forever.
I worry about assisted suicide not just on behalf of the people who might end up, you know, dead, but on behalf of everyone who would be implicated - everyone, if it were legal - because it seems to me to impose some limits on our response to suffering and brings a certain moral jepoardy. If our bottom-line response to suffering is to end the suffering at all costs, I think we may miss opportunities.
no subject
Date: 2010-06-25 03:43 am (UTC)no subject
Date: 2010-06-25 11:12 am (UTC)I worry about assisted suicide not just on behalf of the people who might end up, you know, dead, but on behalf of everyone who would be implicated - everyone, if it were legal - because it seems to me to impose some limits on our response to suffering and brings a certain moral jepoardy.
I worry that if assisted suicide is perceived as an appropriate outlet in the end of life (or for severe disability), it will reduce the pressure for better options.
no subject
Date: 2010-06-25 11:36 am (UTC)Ew, that would be really horrible. It doesn't seem very likely here in Europe, though.
no subject
Date: 2010-06-25 12:51 pm (UTC)Assisted suicide has been legal in the Netherlands for some time, and it really does seem to have led down a slippery slope (http://www.psychiatrictimes.com/display/article/10168/54071):
So unfortunately I don't think Europe is immune.
no subject
Date: 2010-06-26 12:14 pm (UTC)... because it's so much easier to just help old people kill themselves than help them connect with other people? Argh.
And of course this is probably seen as completely different from letting lonely teenagers kill themselves, because, hey! They're old!
Argh.
Thanks..
Date: 2010-06-25 04:12 am (UTC)One question I still have after reading this is around the severe physical pain that folks are suffering at the end of life. You addressed the mental suffering, but I am wondering how you respond to folks who are in their last days of life and want to shorten that suffering (and for whom pain management is not effective)? I suppose I am thinking of the one person I know who used this act, so maybe that is too specific, but it seemed reasonable to me at the time.
Re: Thanks..
Date: 2010-06-25 11:26 am (UTC)I think that pain is often handled badly at the end of life, for a variety of reasons. I don't know if there are actually people for whom pain management cannot be effective, as opposed to people whose pain is not being managed effectively. Doctors are often afraid to prescribe narcotics in sufficient quantities, patients and their families are often afraid to use them because of concerns about dependency etc., palliative care specialists who are up on the best means of symptom and pain management may not be available, etc. etc. etc.
Sufficient quantities of narcotics to relieve pain can depress breathing, so I think in some cases doctors are unwilling to prescribe in those quantities and families are unwilling to administer them. Here in Maryland we have an option on our living will forms to specify that if we are terminally ill with no hope of recovery we want (or do not want) plenty of pain medicine even if it shortens our lives. That's a good start, but probably doesn't go far enough to protect the people involved legally.
I remember when Michael's mother was dying at home in hospice care, being shocked to find out that her pain was managed by a prescription for oral narcotics - large pills which it was difficult to help her to swallow, especially as the end approached, and which also lead to a cycle of pain-relief-pain-relief which can be quite distressing. At the time there were transdermal narcotic patches available, which would have released a constant stream of medication into her skin resulting in constant pain control and no problems with administration. Michael and his father hadn't ever heard of them. I don't know what her doctor's rationale for not using them was.
I would want to see changes in prescribing rules to make it easier for physicians to prescribe adequate pain relief at the end of life, and a huge expansion in the availability and use of palliative care. There is no excuse for not managing people's pain well.
no subject
Date: 2010-06-25 04:50 pm (UTC)Let's say every moment of my life was a rain drop and I had three buckets to store the water in: subpar, par and superpar. In the subpar bucket are the raindrops of every moment I felt severe pain, hopelessness, depression or injury. In the superpar bucket are the raindrops of every moment I felt affirmation, joy, love or triumph. In the par bucket are the raindrops of all the moments that don't belong in the other two buckets.
Now, I know it's true that I've got plenty of water in each of the three buckets. But at any given time, it's difficult for me to accurately distinguish how much water would be in each bucket because the moment of that discernment has its own place in one of the buckets. If that moment of discernment is a moment in the subpar bucket, it's difficult to see the levels of the other buckets from there. Similarly with either of the other two. Honestly, when I'm in the superpar bucket, I may be aware that there are other buckets, but damned if I can accurately tell you how full they'd be. When life is awesome, it's very difficult to remember the moments of real suffering with all their contours and emotional textures. And the same goes for suffering. When I'm in deep emotional pain, remembering the joyful moments of my life is like trying to decipher fine print through a rainy windshield. It's like a language I know I used to know, but can't for the life of me remember how to read or speak.
Every time I've been stuck in the subpar bucket, I think I'll never see the superpar bucket again.
Assisted suicide requires the suffering individual and the assistant to make a judgement about not only the level of each of the three buckets, but the future rainfall due to each of them. For the sufferer, this judgement usually comes from the perspective of the subpar bucket. But for the assistant (and, incidentally, let's not ignore the power dynamic when the assistant is a doctor) this judgement may come from a totally projected and self-constructed view of a virtual subpar bucket with little or no awareness that there are two other buckets. Or, rather, that there ARE two other buckets, but now that the sufferer is dying/injured/disabled/broken, etc., the universe has put lids on the other buckets.
Let's say for sake of argument that there will come a point in my life (after a car accident? when Alzheimers sets in? while standing on a bridge? when the chemo doesn't work?) when every future moment of my life will fall into the subpar bucket. And let's say I was given the foreknowledge that this was the case. I think it's true that with that knowledge, I might want to choose to die.
What if I was given the foreknowledge that every moment between that point and my own death would drip into the subpar bucket except five drips that would go into the superpar bucket? Five drips. Five moments of joy or love or triumph. Would that be enough? How many drips into the subpar bucket would be a worthy price for those five moments? What if it was just one moment? One moment of feeling loved. How many moments of pain would make me want to miss out on that one moment of love?
I don't know the answer to that question. I'm not so naive to think that it doesn't have an answer. It does. There is a number at which point I would rather die. I know that's true. But I have no idea whether the answer is five or ten or a hundred or more. I can't know that. And if I can't know that, with total foreknowledge of what will come, how could I possibly know without any knowledge of what's to come? I would have to guess. And because guessing would necessarily have to be done from the context of one of the buckets, it would always be skewed one of at least three ways.
It might be the case that I have every right to choose to die. But I don't think it's possible to make that choice objectively, meaning that having the right to choose to die is sort of like giving part of me the right to kill the whole me. And that doesn't seem right either.
no subject
Date: 2010-06-28 09:27 pm (UTC)Every time I've been stuck in the subpar bucket, I think I'll never see the superpar bucket again.
Having suffered from depression and anxiety, I've found this to be so, so true and cannot be underestimated.
no subject
Date: 2010-06-26 12:28 pm (UTC)At a birthday lunch on Thursday for a co-worker who is going sky-diving today, we got onto the topic of assisted suicide -- some of them declaring in a macho way that if they were unable to take care of themselves and someone had to help them use the bathroom, they'd want that to be it. This was a table full of temporarily abled people (not that that term is used by my co-workers). I did not talk with them about my family's experience with my mother who died of emphysema (and was unable to care for herself at various points) -- too personal, and I haven't resolved my own feelings about some of it -- but I did say I know a doctor who knows people who thought they would want to die if they became disabled, but then became disabled and didn't want to die, after all, and that actually the will to live can be pretty strong even then. I didn't go on about ableism and societal pressures to suicide, but I am thinking about this if the topic comes back up.
no subject
Date: 2010-07-29 05:48 pm (UTC)It wasn't a *rejection* of those goals... those goals were in a blank place, unseen, and unconsidered. All there is, is dying quickly, and painlessly. They need to be made visible.