Book guides us into That Good Night

Here's something I didn't know until I read the latest book by Toronto-based magazine writer and Ryerson University instructor Tim Falconer, That Good Night: Ethicists, Euthanasia and End of Life Care:

The word Euthanasia comes from the Greek for "Good Death."

Leaving aside the question of whether I should have known the origins of the word euthanasia (today's schools aren't big on ancient Greek), it says a lot, I think, about how modern society has come to view death since this word was first coined.

In our society, post-eugenics and post Nazi-ism, the word euthanasia has much darker connotations than a literal translation would suggest. Today, it conjures up images of cruelty, designer babies and a world in which some people are ranked ahead of others (and other ranked as lesser beings).

With all that baggage, it is hardly surprising that so many people -- particularly from the disabled community -- have been so vocal in their opposition to anything that might make euthanasia possible in Canada. In North America, only Oregon and Washington state have euthanasia laws, with Pennsylvania currently considering legislation.

Falconer would like to see euthanasia and assisted suicide laws in Canada, with strict controls. He's not optimistic it will happen any time soon, however. A full story will appear int eh Toronto Star soon.

Comments

[Eric MacDonald]

'Euthanasia' does indeed come from the Greek for 'good death', but it has been so misused that it is scarcely usable now without misunderstanding. The fact that the disabled have been vocal in their opposition just shows how unusable the word now is. Assisted dying, assistance in dying, and assisted death are nearer to what is meant by those who support choice in dying. This may include both assisted suicide, and active voluntary euthanasia. The focus, however, is on choice.

Disabled people have been organised largely by the religious opponents of assistance in dying. But assistance in dying is meant for those who, in intolerable life circumstances, believe that not to be would be better than to continue in life, and who make that choice. The latter qualification is vital, because there is no intention by those who support assistance in dying of trying to force people out of life who wish to live. This is fear-mongering of the worst sort, and is generally associated with the command morality of religion. It is, however, peculiar, that people feel that the anxiety that people might feel at the availability of choice in dying should outweigh the sufferings of those who are living with intolerable pain and distress.

Clearly, this must have careful legal controls. In her book "Dying Justice", the Dalhousie law professor Jocelyn Downie explains the legal and moral issues regarding assistance in dying in some detail. Research in the Netherlands and in Oregon have not shown that vulnerable people would be endangered by laws legalising assistance in dying, and it should not be forgotten just how vulnerable those experiencing intolerable suffering really are. Tim Falconer may not expect the laws in Canada to change any time soon. I think we might hope that things could change more quickly than that considering how much people often suffer when they die.

The one question that should be asked is this: What right has a society to tell its citizens how they must die? If they can refuse treatment and even food, why can they not also expect that help may be given so that they may die with greater dignity? Some people die by their diseases very quickly, and with slight distress. Others may die over long periods and in great misery and affliction. Why may the suffering not choose to foreshorten their lives so that they can die in a way that does not call into question the best that they have known?

[deana]

The issue is none of those stated in the article and the above comment. The issue is only one of power. The medical industry/government want to be the ones deciding who gets to live or die. The Baby Kaylee incident, as an example, tells us this.

Personal autonomy is on the rapid road out. Maneuvers to take away personal freedom are always veiled. This is because knowledge is freedom and freedom is being taken away... !

This website consists almost exclusively of things that have happened because of the loss of personal choice. But it never actually announces that choice is lost.

I've always felt my skin crawl at the notion of the medium is the message. Communicating in this way seems so random and dangerous because media is a mere application of some perchance electronic invention or discovery. It's not as if someone realized, hey, what we need is a box in our living rooms to inform us of the truth.

I would like to see this blog become committal. What is its point? And let's not say "debate." A debate only exists when someone starts it.

[Eric MacDonald]

As much as I support your freedom to hold the views you do, Deana, I think, to the extent that I can understand you, that you are wrong. There is, certainly, always an interplay between freedom and restrictions on freedom. but I do not think it is true to say that the medical industry or the government want to be the ones deciding who is to live or die. There's no evidence for that, despite the case of the baby Kaylee. Was it a mistaken diagnosis? Possibly? We don't know yet. But if it was, it was a mistake, not a matter of someone making a choice between life and death. Hopefully, the doctors concerned will learn from their mistake, if that is what it was.

However, there are now many people who are forced to go on living in horrible circumstances, because they, like Sue Rodriquez, are not able to bring their lives to an end, even though that is what they want. As the law is at present, when people's dying has become intolerable, they my refuse food and water and treatment, and then they are kept in as comfortable a way as possible while they starve to death. This is neither kind nor loving nor humane.

Every bit of personal autonomy that we have has been fought for, and still has to be defended. But there are realms of autonomy that we still need to claim. The right to die when and as we choose, when circumstances become intolerable, is a crucial aspect of personal autonomy. In most places this autonomy is denied.

As for debate. Debate happens when people discuss things about which they are not in agreement. Since I'm not altogether sure what you want to say, I don't know whether we've got a debate going or not. What is the point of debate? To see if we can come to agreement. To find the truth. Even, sometimes, to find out what it is we really believe.

[deana]

You're saying that each person should make his or her case; in the process be allowed to chose from every possible option and then decide what to do from that full unconditional gamut. I agree with you.

Now what you and I need is a terminal, painful condition and put this to the test rather than spout from positions of comfort. I think we'll find like Kaylee's father that logic will not be rewarded as you propose (and I wish I could propose).

The jealously guarded sensitivities of the medical profession will have first dibs on the best fit. If I have to choose from a menu of what's left, then I do not have power. I have to know my place and say, hey that's the way it is here.

Your mistake Eric is thinking everything is on the menu. It's not. A menu is fashioned from what's available, and the vision of the establishment that puts out the menu. In the middle of the ocean, it's salt water. In health care it's whatever someone wants to push, or doesn't want changed. Crying rights is really passé now. It makes you look like a cat left out in the rain.

[Eric MacDonald]

Well, Deana, I'm not sure we've got a debate going here yet. Kaylee is, I think, still alive, because her parents had choices to make, and they made them. Doctors now acknowledge that the Joubert syndrome of Baby Kaylee is rare, so they don't have a lot of experience with it, and, in this case, apparently made an inexact prognosis. It's also very very very various in its effects, and no one knows how this is going to turn out.

Other than that, I don't really know what you want to say. You talk about menus, and suggest that you just have to take what's there. Well, sometime, there isn't really much choice, but I don't think doctors are really trying to take choice away from people. And so far, your words don't add up to an argument.

I'm talking, and so is Tim Falconer, about choice, about the choices we can make when people's suffering has become so terrible that they would choose help to die. This, so far, is not a choice that is available to people in Canadian law. I think that is a moral scandal, and that end of life choices should be available, so that people can be helped to die before suffering has taken the beauty of a life and transformed it into something that, in the end, is remarkable only by its horror. I think this can be done with careful and compassionate legislation.

Right now what is being pushed is so-called 'natural death', palliated as much as possible by the means available. Many people die horribly this way. You die the way that your disease prescribes. And if that means, like people with ALS (Lou Gehrig's disease), that you gradually become completely paralysed, even though your mind is still awake and alert, and you die by suffocation, then that is the way you die. If, on the other hand, you are lucky enough to die in your sleep of a heart attack, say, then that is the way you die. I don't think that's fair, and I think our laws could be made more fair to those who suffer.

Kaylee doesn't really enter into this, since she will either live or die. She doesn't seem, from the look of the pictures, to be suffering very much, but some people do, and it's time that the law took their autonomy into account.

Deana, you keep saying that we don't have autonomy. As I said in my last post, this is something we have to fight for. The right to die is one such right that is vital to our autonomy. The law, despite all the religious objections, should be changed.

[deana]

Yes, autonomy is natural, and desired. I'm saying we'll never get it. Autonomy means choosing unconditionally. I was not talking about Baby Kaylee, rather her father. Her father chose to do what he thought made sense. "Give Kaylee's heart to someone my wife and I choose: this will make our grief easier to take." This choice was made from his literal impression that the hospital really cared about his grief and that the baby was doomed. The only reason the baby lived, and this is after the fact, was that Kaylee's Dad messed up the process by misunderstanding the myth that donation is all about making good come from bad. He really did want good to come from bad: For HIM, his WIFE, his CHILD, and his newfound friends. The hospital found itself caught in this unexpected show of autonomy not on the menu, and was forced to say "Your baby isn't terminal after all, she can go home (oh, and pleeeeeze get out of here.)" There was no misdiagnosis, Eric...

Autonomy is less and less available as the medical industry becomes more about sliding the healthcard through the scanner. The medical industry will kill you but you just mustn't ask for it, or start quoting rights. They will do it their way, and they do. They are middlemen for a lucrative and dramatic process.

So the schtick is, make euthanasia complicate, illegal and unethical so people can't claim the intelligence and power to take a life even if it's their own, and have the medical profession clear the takeoff. Doctors want to own death and dying. It's exciting, whimsical, exotic and in Canada at least, something that the profession can make a lot of money in taking out of sight.

The first thing is to call it flowery names like, living wills, organ donation, DNR etc. Calling it suicide is such a slap to those who feel exclusively able to behold and stomach the process of death. The rest of us are supposed to pretend it doesn't happen and accept medical humoring. This is the tax subsidized make-work- for-doctors service, and why wouldn't we as the public not want to comply? Why do we want to call it suicide and go primitive? There's no money in that, power, social hierarchy or professional status.

The worst thing ever is to tell a doctor during an examinaton that you read something on the internet about your illness. Can you imagine what he/she does when you say it is my right to die because if I were able to get out of the hospital to a bridge I would jump off it?

Reality here is simple and as such very disturbing. If we, as patients call the shots as to whether we live or die, there goes the doctor's mystique. Who will want to go into medical school then? A doctor hates partnership with patients. Should we even have medicine as it is now? We could have a completely different system and it would also work.

Think of other self-interest con jobs. The priesthood with their satin robes and apparent godliness, or judges and their blindfolds. Paf, these are such arbitrary impositions on our trust. If we started to fight for autonomy, the only thing we are going to get is punished. That punishment will be euthansia but it won't be a good death. It will be a real down home snuffing out.

I know someone who asked to leave a hospital as as expression of his autonomy. He was thereupon falsely imprisioned, put in a corner and totally disregarded. His brain was left to swell through all the herniations and strokes without any painkillers. Can you imagine that? And this was just so that the medical right to make decisions --for the sake of making the decisions -- remained intact. An honest assessment of a patient's condition is seldom the goal. It's the agenda that comes first.

If patients get to be autonomous, we would have to completely change the notion of medicine today. Patients would be encouraged to play a part in their healthcare, and encouraged to read up on the internet about it. Wow, can you imagine the average doctor thinking their patients were smart and capable? Ye gods, we can't have that. A doctor's visit would last 15 minutes instead of five, and worse, fewer people would be coming to see the doctor. So Eric, there goes the autonomy idea. Heck, there are husbands and parents who don't want their wives or kids to do things for themselves. It's about mystique and justification for control.

[deana]

Here's an interesting link on the topic of patient autonomy. It's long but worth the read.

http://www.reason.com/news/show/32591.html

It supports my position that many organs go to those who specifically do not themselves donate. There are people like that in the world, lots of them. They have a pathological sense of entitlement and lots of money to make up for their double standard. I do not subscribe to organ donation and I also do not wish to take someone else's organs.

This whole deal is shady. Organs never go to "the sickest." Sick people cannot survive the transplantation process. And they don't. But you never hear about it. Stuff that appears in the media is heavily biased and is published with an agenda attached. Just as the organ industry is owned, so is the media.

The only difference between the awful stories coming out of China, Pakistan and Russia to do with organ procurement is the words we use in the West. We honestly think that our refinement comes from the fact that we use better words to describe what we're doing, and do it in hospitals with better coloured tiles, and cafetarias with better coffee.

So if ambiance is our only claim to being more civilized, are we really? I would say we are morons of the highest degree.

[Eric MacDonald]

Thank you Deana. I'm sorry, I hadn't checked back for a few days. I agree with you that in many situations autonomy is certainly endangered, and often denied. The whole business of negotiating the end of life is strewn with obstacles and landmines, and I agree that doctors, by and large, want to retain control, though there are a number of doctors who are much more prepared to cede control than you may think.

I think you are also right about the church, and about priests in their satin robes. Right now, so far as assistance in dying goes, I think the churches may be the main reason why we have not been able to advance beyond the point we have now reached, where a solid majority of people seem to be in favour of increased autonomy in dying, and the churches are almost 100% opposed to it (despite the fact that they do not represent their constituencies).

But then you tend to spoil it all by saying: "If we started to fight for autonomy, the only thing we are going to get is punished. That punishment will be euthansia but it won't be a good death. It will be a real down home snuffing out." Why would you even say such a thing? There is absolutely no evidence for such an exaggerated claim. At the end of your second note you say: "I would say we are morons of the highest degree." I know this comes at the end of a note on organ donation, which is not really the issue here, but it is an unreasonably harsh judgement, and tends to diminish the value of the perceptive things that you do say.

I acknowledge that there are ethical problems and obstacles to autonomy practically everywhere you look, but there is no need to go overboard. Many doctors now encourage intelligent involvement in health care. Some, obviously, busy as they are, may be impatient with the fact that some patients, because access to very uneven information is now so easy through the internet, think they know more than the doctor does. Sometimes, they may. But there must be a balance here. If I go to the doctor with a problem, then I am depending on her/his expertise, otherwise, why would I go? If I question the doctor's judgement, I may be right, but since the doctor is an expert, I'm less likely to be right than he/she. In my experience, doctors are quite prepared to listen to my suggestions, and to consider them seriously when there is reason to do so, or say why my suggestions are not relevant to my problems.

One of the things that Tim Falconer's book is good about, by the way, is the complexity of the decisions that are made in hospitals around end-of-life issues, and how very thoughtful many doctors are about these things. These are not simple matters, and many factors come into play. So, autonomy may sometimes be difficult to honour in particular situations, and very often the question may be whose autonomy is at issue, the patient's, the patient's loved ones, or the doctor's and health team members'. I do not want to oversimplify these very difficult questions, but I do not think we should despair of trying to achieve some reasonable understanding of how these questions can be best resolved for the good of all.

As for the question of the ethics and fairness of organ donation, I have nothing to say. I know too little, and would not wish to hazard a definite opinion. The ReasonOnline article is interesting, but I don't know enough to be able to comment intelligently about it.

[Dinesh]

In our society, post-eugenics and post Nazi-ism, the word euthanasia has much darker connotations than a literal translation would suggest. Today, it conjures up images of cruelty, designer babies and a world in which some people are ranked ahead of others (and other ranked as lesser beings).
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