Flutterby™! : Pratchett on Assisted Suicide 2009-08-03 04:14:27.794318+00

Pratchett on Assisted Suicide

2009-08-03 04:14:27.794318+00 by Dan Lyke 20 comments

Terry Pratchett, diagnosed with Alzheimer's Disease in 1997, calls for UK law to allow assisted suicides:

Life is easy and cheap to make. But the things we add to it, such as pride, self-respect and human dignity, are worthy of preservation, too, and these can be lost in a fetish for life at any cost.

I believe that if the burden gets too great, those who wish to should be allowed to be shown the door.

In my case, in the fullness of time, I hope it will be the one to the garden under an English sky. Or, if wet, the library.

A friend of mine (a hospice doctor) told me about a study done on people who had been given drugs for assisted suicide in Oregon. A couple of interesting bits:

To me, this says something about what we (affluent, educated, white people) expect out life.

(And just to point out: I'm not advocating a fetish for life -- clearly many measures people take are insane. My friend the hospice doctor is full of crazy stories about people taking extraordinary measures with a death sentence staring them in the face.)

I think that it's largely us affluent educated white people who have the luxury of being strung out on extended life extension measures while the assorted organizations dedicated to keeping people on life support forever bleed the resources of those who support us completely dry. Not too many low-income urban black males, for instance, are going to be concerned about what happens when they get into their 80s.

And, yes, it would depend a lot on the particulars of the situation, I can play all sorts of hypotheticals but wouldn't ever know 'til I was staring down a particular fate whether or not I'd pull the trigger, I just want the option. And I also believe that if I allow the state to tell me I can't make the most basic decisions about my own life, that I've started ever so slightly down that slippery slope.

#Comment Re: made: 2009-08-03 23:22:18.135955+00 by: Mark A. Hershberger

In this case, aren't you trying to make your way *up* a slippery slope since you don't (legally) have the option now? That's the thing about slippery slopes: they're very hard to get to the top of one. ;)

And I don't know what the racial balance is during old age, but I know there are more than just White folks and Black folks. My (Vietnamese) wife is always telling me how traditional Vietnamese shake their head at all the stupid things Americans do.

Finally, there was speculation (according to my friend) that those third who got the drugs but didn't use them felt empowered just by having the drugs and could, after that, make it without using them. Given his own experience around death, he thought a big part of what was going on was the super-independent, don't-need-anybody, mentality that "doesn't want to be a burden" on others at play here. Our dependence frightens those of us who spend our lives in more privileged positions.

Medicare and Medicaid pay out enormous amounts to keep those that are vegetative (brain dead) on life support. It is most often the sequence of medical events, rather than the ability to pay, that keeps people on life support. It is a much more difficult process to remove someone from an artificial support technique than it is not to start them on one.

If the family does not agree, it is a long, and frequently impossible task to end life support. Even when the family wants termination of "artificial means", it is not always an easy thing to accomplish.

As Dan notes, if you don't formalize your wishes ahead of time, and provide a mechanism for carrying them out, you may end up with the defaults that the State has decided on for you.

I'm familiar with that. Another friend of mine (from the same group of people) has a husband with severe dementia. She just moved him to a new facility designed specifically for those with dementia. In the process, she discussed things like food with them.

For example, The state requires that they weigh their clients three times a week. Any weight-loss is a big deal. So they try to make sure they get the proper number of calories (at least, according to what they've calculated). When they said something about him not eating his soup, she said "Oh, he never eats soup." Fine, they said, We'll just give him an extra sandwich. "He'll never eat more than one."

She has made it very clear to them that they're not to take any extraordinary measures -- including feeding tubes -- but she has to fight against the system the whole way. He isn't even on life support.

So this isn't even really a matter of formalizing your wishes. The system we've created is messed up.

My friend says she wonders if she shouldn't have kept her husband at home -- she wouldn't have been able to provide the level of care they have and her husband may have already died.

The system is messed up. Assisted suicide is just a band-aid on a gaping wound. It provides a quick out for us, but leaves the larger questions about society's responsibilities at the end-of-life unanswered.

#Comment Re: made: 2009-08-04 02:38:57.73245+00 by: Mark A. Hershberger

Oh, and since this is a thread about (usually) old people and this is flutterby, have a link about Nursing Home Sex:

#Comment Re: Nursing Home Sex made: 2009-08-04 13:06:16.340164+00 by: m [edit history]

More and more institutions are accepting the sexuality of the aging. This is even more true in assisted living facilities, where romance and even bed-hopping is providing a new battleground for the sexual revolution. The incidence of STDs is rising amongst the aged. I don't think the viagra generation is going to tolerate such restrictions for long. Obviously such freedoms are dependent upon the State, state and institution the individual is in. A fundamentalist nursing home is unlikely to provide for happy times.

And the capacity for love continues. Shortly before his death at 95, my father told me (in my 60s), that I was still too young to really know what love was or experience it. He went to senior aquasize (aquatic exercise) to hook up, because he said "I get to see what they look like without their clothes on first." He was always a dog. He celebrated his 94th birthday with two hookers and a large bottle of vodka. It went down hill when one of the girls accidentally set off his medicalert, and couldn't turn it off. The girls quickly disappeared. The ambulance came, mistook his ire for dementia, and took him away. We only found out when we were notified by his doctor of what had happened.

I think the above hijinks, and lots more, were a good part of what kept him alive, active and full of life for so long. One sister who is a priggish prude was appalled, another sister and I thought it was a terrific dad story.

In even the most liberal societies (Switzerland I think) on the matter of end of life care, there are limits. In the US those limits are severe. But they can be worked around to a great extent.

Suicide as a solution to intractable pain or terminal disease is much more common that reported. Physicians frequently provide meds and information on suicide. Though they need to be subtle about it. Sort of on the order of "You really have to be very careful about taking these pain killers and sleeping pills. If you take more than 20 you will just fall off to sleep and never wake up again." Patients will hoard meds and take them . Autopsies are not required when a patient is currently being cared for by a physician. And even when done, will generally not include toxicology screens. "Final Exit" type books are available, and a number of quiet, easy and painless mechanisms for suicide can be found with minimal research should one not be able to find a sympathetic Doc.

Preparation for end of life care is important. A living will is a must. Fill it with your options even if they are not legal now. It also provides a mechanism for demonstrating your intent to your attending physician, who can make quiet decisions to help you reach your goals. Statements like, "I hate and fear pain most of all, and want all actions taken to prevent pain or even the possibility of pain even if I am in a coma and don't show any signs of pain, even if that has the effect of shortening my life."

Also important is having a personal physician who is sympathetic to such issues, a guardian who will be an assiduous advocate for your wishes, and ending up in the right institution. These things can be planned for, and Docs have a lot of leeway in what they do that make possible things that are obvious violations of the law. They just need to be approached properly. You don't want a Doc who thinks suffering is good for the soul. But then you don't want such a physician during any other time of your life either.

If you are awake and competent you have a fair amount of control about what is done to you. In general an adult can refuse care. To force care on an adult is usually a serious crime, sometimes a felony. At the least, misdemeanor assault and battery. Nurses and physicians don't want criminal charges. They can lose their licenses. I threatened a Doc with that once, and he just went away. Some of course are idiots, and will force treatment anyway.

If you are in a coma or incompetent it becomes more difficult. Your preparations become more important. Particularly your choices as mentioned above as well as your living will instructions.

#Comment Re: made: 2009-08-04 16:46:07.325803+00 by: Mark A. Hershberger

fwiw, I and my wife have a living will. But now that you bring it up, why would someone even say "I hate and fear pain most of all"??? Maybe I need to work on my empathy more, but pain is just pain. Its not enjoyable, but "hate and fear"???

And I have only second-hand information (like my friends above) but my understanding is that many times doctors by default go for curative treatments instead of palliative care when presented with, say, an 80-year-old with an intractable disease.

The hospice doctor, in particular, complains about hospitals giving treatment after treatment instead of talking to people about hospice care until it is almost too late.

So, sure, people who've sat down and thought about it will have a living will and they may be in a better position to accept or refuse treatment. From my point of view, that's no big deal.

The problem, as I see it, is much more tricky than "do we allow people to kill themselves if they're in pain and going to die?" Instead it revolves more around this "fetish for life" that Terry Pratchett mentioned. Medicine has developed a great capacity to heal people and doctors are trained to heal people by default. I admit I wouldn't be comfortable with it any other way.

But we die. All of us. And at some point the physician should start having those discussions with their patients. "We can keep you alive for X amount of time by doing Y but you'll be in pain/barely conscious/whatever. And you'll still die shortly. Or we can keep you out of pain and nature take its course."

Again, I don't have any direct experience with this, so what I'm saying might not be that applicable. But I do think there are a lot more questions here than just "assisted suicide or no?"

What I hate to see are families spending/losing 90% of their personal worth/assets simply covering the medical costs of maintaining two (or less) years of dehumanizing life for a loved one. I, personally, would not want to place that burden on anyone. Let me die with dignity, while I can still understand what is happening around me.

Been spending some time as a spectator in the ICU and ACU recently, there for 4 hours or so last night. Perhaps what people are saying when they claim "I hate and fear pain most of all" is that they hate and fear the loss of control associated with pain. What sucks more than not being able to walk more than a few steps without assistance is being told that you have to stay put, or you have to eat this particular thing. Nurses and hospital staff are conscious of this, but there's only so much they can do to mitigate the reality of the situation.

I'm not gonna claim any particular superlatives in pain, but I've had a couple of pain experiences that I think of as "towards the top of the scale", and the ones that were most annoying are the ones where I was incapacitated. There was a particular mountain bike crash that may be the most pain I've ever experienced but I could stand up and limp, with the support of my bike, back towards the trailhead, and as long as I could keep moving and keep breathing I could deal with it. When the person riding with me asked "are you okay", I had to curtly say "shut up. can't talk." and keep limping. There have been one or two other times where, confined to the couch or the bed, I've been in real agony, even though I think the actual pain was less.

So that third in Oregon that decided not to take the pills was still getting something from the ability to make that decision: control over their own lives; an option.

And pretty soon we're going to have to have the "fetish for life" discussion based just on economics alone. I don't want to spend on health insurance what it'd cost to keep me alive in certain instances. I don't want to impair my healthy productive times on the chance that certain situations may hit me. I'd like it if this can be my decision, if I can pick and choose some subsets of coverage and have the option of not being kept on life support when the money runs out in order to have a better life when I'm healthy. Society won't let me do that right now, and as we move to a more centrally-controlled healthcare system, the details of those choices are going to be even further from me.

m, thanks for the reminder, Charlene and I haven't updated our ADs since we got married, we need to update them.

#Comment Re: made: 2009-08-04 18:52:44.205414+00 by: Mark A. Hershberger

I think I grok the pain thing a little bit better with the way you've framed it. I'm still working on getting to that point, though, where happiness doesn't depend on whatever control I do or don't have over my environ. That is my personal ideal so I'm looking at the situation as a challenge instead desperation. Looking at it that way from where I am, though, is like the Queen of England thinking about a street persons life as "a delightful challenge."

A couple of issues here. The one that I meant to address is telling your physician that you want, and giving your doc what he needs, to justify life reducing measures. That in the event that you can not speak for your self, and that you are unlikely to recover, your physician is charged with preventing pain. Giving you as large doses of narcotics as legally possible, thereby hopefully inducing a more rapid death. Of course you have to have a doc who doesn't believe that life must be prolonged at all costs. Many are sympathetic.

Pain is a strange thing. Yes, it is just a sensation as is orgasm. But pain, when sufficiently severe, does damage in and of itself. Severe pain in and of itself can bring about shock, which can result in death. Severe pain can inhibit healing. Pain can develop a life of its own, and become chronic pain which exists after the initial provoking damage is healed. Phantom limb pain in amputees is an extreme example of this. Pain can be so intolerable that it drives its victims to suicide, or debilitate them so greatly that they can only wish for suicide. Pain certainly has psychological components -- cause, amplification and amelioration. Meditation is a good mechanism for pain relief.

There are fundamentally different levels of pain. Pain which is annoying. Pain which is focusing. Pain which is debilitating. And then pain that turns an individual into a screaming puddle, completely incapable of anything beyond experiencing the pain unless they are lucky enough to go into shock.

I was at a funeral over the weekend. My 83 year old aunt passed away last week from pancreatic cancer. She had been under hospice care for about three months and got to finish up with some things she wanted to get done before passing. She was in a lot of pain at the end and, according to my cousin, was doing a lot of praying that the Lord would come on and take her away. She got to say goodbye to everyone important to her before taking her last breath.

My mother, her sister, just sat down in her chair on Christmas morning to work her crossword puzzle in the quiet before family came over, dozed off and never woke back up. Due to mom's heart condition we knew she would probably go that way but the timing was a complete surprise. I think that in her own way she had finished up what she had to do and just sat down and died. No goodbyes, she's just gone but I really believe that was the way she would have wanted it. She never did like goodbyes.

I'm not real sure what I have to say about this but it the topic is one that has been on my mind over the weekend and I felt I needed to share the comparison. While we like to think that our death is personal it really isn't. Whether we want to or not we are going to share the experience with those around us that love us. It can't be helped. While I think that accepting our death is important I'm still not sure that suicide is anything more than a selfish way out. My aunt suffered through her death but her family was much more prepared for it. It's been over seven years and I'm not sure I've accepted my mother's death yet.

Good ol' 12 step: "God grant me the serenity to accept the things I cannot change...". I've found in general that anger occurs when my mental model of how the world works is out of step with how the world actually works. Sometimes this means reducing my interactions with people to some pretty harsh objectification; that person is an object with inputs and outputs, and when their inputs are X, their outputs are Y: why did I expect different?

On the QofE and "delightful challenges", I'm currently reading Shantaram

, by Gregory David Roberts

. I'll review it in a bit, mostly I'm enjoying the hell out of it, but its a novelization of his life, in which he ended up for various reasons (escape from prison and Australia) making a completely fresh start on life at 30 years old, unable to contact anyone he'd known before or to leave India (dodgy passport, etc), as a white English speaker in the slums of Mumbai. Has some good musings in it about accepting situations and fighting the tide, some good reminders of just how blessed our white upper middle class United States existence is, and a bunch of really great reminders that people have managed to be happy in circumstances that you and I can only begin to imagine.

m, on debilitating pain, last summer when I had my ACJ separation in the skate park I knew I'd done something major because there's a feeling that I've gotten on major injuries where portions of my reflexes and thinking shut down. I don't know how to explain it, and I don't actually experience that much pain when it happens, but I've learned to see it and realize that the injury is a lot worse than I'm experiencing consciously. Whether or not its temporary, that my nervous system starts shutting bits of itself off because my conscious parts can't handle the reality suggests that, yes, the body can react in pain in ways that do deep and lasting damage to the mind.

Larry, I've few regrets, but one of them is that when I was talking with a grandmother on the phone a day or two before she died my message was "courage", and not "go gentle".

Dan, re the ACJ separation experience: this sounds like a phenomenon called shock anesthesia in which pain may not be experienced at all, or in a limited way for a period of shorter or longer duration. Its happened to me a couple of times as well.

Larry, for those close to us I don't think we ever accept their deaths in totality. Even when the death is expected.

My wife's brother was brain dead, and on a respirator without a living will. It took us a couple of months to convince his next of kin, their mother, that although the body was not decaying, that he was not alive in any real sense.

Because we made that decision for him, my wife and I felt ethically obligated to attend what is called the "terminal weaning." The respirator tubing is removed, and the body is given a large dose of morphine to suppress breathing. You then sit around and hope that the the body will indeed stop breathing, rather than be able to start on its own again. As the muscles tired, his breathing became slower and slower, finally entering a stage called the "Cheynes-Stokes" pattern which means that death is imminent.

We were lucky, the process took about four hours. The process was much much more than unpleasant. I felt very guilty for some time -- for a while I even looked around to see if cops were going to arrest me. Even though I knew what was done was legal, the ethical thing to do for any number of reasons, that I would want the same done for me. And that I rarely suffer overtly, or even noticeably, from unearned guilt.

But death has such finality. It is so foreign to our thoughts, especially in this culture in which we rarely see death. I believe it is something that we never truly come to terms with. But this is not just a cultural issue. Primitive cultures, which see death of animals, and are often present at human deaths, maintain long ties to the dead as if to deny their deaths.

#Comment Re: made: 2009-08-04 23:00:55.637127+00 by: Mark A. Hershberger

I remember looking at my father and brother and telling them he'd be gone two weeks from then and that I was sorry I couldn't make the funeral. My dad didn't believe me. Two weeks later I didn't make it to the funeral. No one demanded he be put on life support or feeding tubes or any of that. He was allowed to go.

I would gladly beat the hell out of any bstard that ever told me that little boy should have been put on life support and forced to live longer with that pain. Assisted suicide and release of life isn't just for the old. Sometimes it's the greatest mercy we can give a child too.

#Comment Re: made: 2009-08-05 18:13:23.101537+00 by: Mark A. Hershberger

The story you tell about your grandfather echos so many others I've heard: sometimes people need permission to go. Not saying that's what happened -- you know better than me -- but there are similarities.