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A Right?

March 9, 2010

(warning: this is a long one)

A discussion on Violet’s blog has prompted me to blog about an issue about which I feel very conflicted. Euthanasia. The right to die. And a host of other names people come up with for the an incredibly complex situation that many like to pretend is very cut and dry. It’s not.

The discussion was prompted by a proposed change to legislation in Canada, Bill C-384.

This enactment amends the Criminal Code to allow a medical practitioner, subject to certain conditions, to aid a person who is experiencing severe physical or mental pain without any prospect of relief or is suffering from a terminal illness to die with dignity once the person has expressed his or her free and informed consent to die.

You can read the whole thing here:

So what’s my problem?

I’ll start first with the wording “the right to die with dignity”  What is being said there? That somehow being terminally ill is undignified?  That there is no dignity in having others care for you until you die? That being ill is something to be ashamed of?  It is only so because we as a society have made it that way. People are embarrassed to require assistance. It isn’t dignified to have others feed you or help with very private care. So ashamed are we  that we tell our loved ones we would rather die if that were to happen to us.  And so laws like this happen.

But the wording of the law is only the beginning. That really isn’t what I have an issue with, except that the wording is at the root of the greater fear.

The word “dignity” is one of those terms that gets tossed around when people talk about right to die. Another phrase you will often hear is “quality of life”. That one sends shivers up and down my spine. These words scare me not because they are so vague, but because most people who use them don’t think they are. They are sure they know what it means.

And perhaps they do. A society has to come to a consensus on things. How else would we ever come up rating systems for movies or legal definitions of words like “indecent” or “pornographic”.  Judges attempt to define a society’s “commonly accepted standards”, and we end up with legal precedent and eventually laws.

There appears to be growing support for euthanasia in Canada. As such, the government is examining creating this law.  And that’s exactly how it should be right? Laws are created to reflect the greater will of a society.  But what if doing so slowly erodes the value of life itself? What if doing so eventually erodes all support systems so that one really has no choice at all? And what if  the accepted meaning of  “quality of life” gradually shifts more and more towards perfectly healthy humans under 65 only?

Fast forward. It’s 2065.

John has just left his doctor’s office. He’s received the horrible news. He has a terminal disease. It will be slow and painful, and there is no cure. The doctors think he has only 4 “quality” months left.  John wonders how he will break it to his wife. He gets home and calls the termination center. They schedule his end for three months from that day. Later that night, he has second thoughts. What if I could hold on. My daughter will have her first day at school in the fall. My son’s team might make it to the finals and I could watch it from my bed at least? But he knows it’s not possible. There is no support network anymore. There is no social structure to support illness. No in-home nursing, no nursing homes, no long-term care facilities, no hospice. These are all things of the twenties his grandpa talked about. All of that is gone. Nowadays, the defective ones remove themselves. You don’t make a fuss. It’s considered selfish. To be a burden on society is not accepted, he would bring shame to his family.  And his poor wife. What would the others say, knowing he had chosen to let her suffer this way, having to care for him. Three months later, in the quiet room at the Termination Center, he smiles at his wife.  The disease has progressed and he is now weak and sometimes in pain. He wishes there was cure, but he understands scientists have better things to work on. He wishes there were better pain meds, but there is no market for such inventions anymore. Still, even in pain and weak, he would like to live another day. But he has to be strong. He has to do the right thing. As the drugs hit his bloodstream and his wife’s face begins to fade, he wishes he had had a choice.

What? You don’t believe it could ever get to that? I respectfully suggest that you are naive.

The danger is not in the law itself, but in the slow and steady societal shift it will bring about.

How long will it be before the decision to end your own life becomes more common than allowing nature to take it’s course?

How long after that before those who chose not to end their lives are viewed as bizarre, cowardly and even selfish?

How quick will governments be to shift funding away from long-term care facilities, letting them fall into disrepair and reducing the patient/staff ratio, making the choice to keep living even less appealing if not impossible?

As fewer and fewer people chose to live with debilitating diseases, how long will it take before all research and development into new devices ceases? Devices that could make living with the disease so much better. New types of wheelchairs or ventilators or communication devices, or feeding systems.

It’s a snowball effect. Once you start going in one direction, the momentum builds and there is no longer an appetite for the alternative, particularly if that alternative is so much more expensive.

But let’s get back to “quality of life”  and “dignity”

I cringe at these terms because I have lived the other side, or rather what some would see as the other side.  My disability is in my eyes minor. But to some, the life I live is one they cannot fathom for themselves. Some of the things I have gone through, the times  when I have needed help for things like showers or even bathroom use, these are things some people might consider as not having dignity, yet for me, I couldn’t care less, I just feel blessed that I’ve had the help I needed when I needed it. I have to use a wheelchair. Ok sure. But modern technology has made it so I can zip around in a power chair at speeds of up to 10km/hr, and even venture into the woods on trails. I drive my own van, and until recently had a great job.  Still, some would consider the life I have as one with less “quality”. Maybe not you, but lets say a guy who lives to climb mountains and jump out of planes, tell him he has to live in a wheelchair, ask him if that is a diminished “quality of life”

I once had to stay for nine weeks in a rehab facility. I was there for respiratory rehab. The facility is second to none and some fantastic work is done there. It’s a modern building and the wards are set up like spokes off of a central hub that serves as a lounge, with a large TV and a fake fireplace. I was on the rehab ward, and the two others were long-term care. Most of the patients in the other wards had severe respiratory problems. In fact most were on ventilators 24 hours a day. Despite this, many were out of bed at least part of the day. They had power wheelchairs which they controlled with they’re mouth, a communication device, and a ventilator mounted on the back. And off they went. Often out in the beautiful hospital grounds, watching the squirrels and birds. Feeling the sun and the wind on their face. A quality life? A life with dignity? Who are you to judge?

But. These things cost money. Lots of it. My wheelchair alone cost over $10 000.  Can you imagine what one costs when it has all the tilt and adjust functions, a communication device, a ventilator and a special mouth controller? Serious cash.

So I was sitting late one night with a nurse I had befriended. We were just chatting as we often did. Suddenly we got on the topic of what things cost. I had been a little miffed that my doctor had cut me off from liquid oxygen and back to cylinders. (with the liquid you fill your own small canisters and it’s much more portable) He had cut me off saying it  costs too much, and you don’t need it. He was right, I was able to make do without it as I don’t leave the house with oxygen. But it’s the discussion that followed that was disturbing. “Lots of things are a waste of money” she said. ” And then pointing to the other two wards  “Do you think those people should be kept alive? Do they really have any quality of life?  What do you think it costs the government to keep them alive?”

I was stunned. How could  a nurse, a health care provider, have these thoughts? And how could she possibly think that voicing them to me was ok? Where did she draw the line? I was worth the money but they weren’t? In her mind, these people, these wonderful human beings who had chosen to cling to life they wanted to live, were just a big waste of money.

Being a Canadian, I had not yet associated ones life as having a monetary value. I had never thought of medical care in terms of  a cost/benefit formula. Interestingly, I have been asked by many many doctors what I do for living. It always comes out as a simple question, and I try make myself believe that it’s just curiosity. But since that day with the nurse, I can’t help but think they are gauging my value to society. And I may have imagined it, but on a few occasions I thought I detected a shift in attitude after the “really? you work full time? that’s great!”

Keeping people alive costs money. Building facilities to care for  complex medical patients costs money. Staffing these facilities so that every patient can be cared for and treated in a manner every human being deserves costs lots of money.  Research and innovation in new medical equipment for the disabled, new drugs for the terminally ill, new practices and techniques to keep people as comfortable as possible and to add quality to their limited time, all of that costs lots of money. So why would anyone invest the time and money in these areas if society slowly shifts toward euthanasia?

If you still don’t believe this slippery slope is possible, you might be thinking the Netherlands have permitted euthanasia for a long time, that’s not happening there.

Consider this news story. A group in the Netherlands wants people over 70 to be allowed have their lives terminated for no reason other than they are tired of being alive. Reading the story it seems to me that the proponents have a fear of growing old, and what that experience brings with it. It would seem the shift is progressing well in the Netherlands. Not only does the suffering of a terminal illness make a life not worth living, but simply the suffering of being old.

This is the dangerous gradual slow shift I am talking about. This group wants old people to start offing themselves too.  Then what? Kids with Downs Syndrome? The severely disabled?  Amputees? Short people? Fat people? People with brown eyes?

What’s that? I’m being silly? Ok, tell me this, at what point in that last paragraph did you feel I had crossed a line? Amputees? Short people?

In my opinion, there is no line. Human life is human life. It’s meant to be experienced and lived to its fullest possible no matter what it brings. A compassionate society provides what is necessary for this to occur.

The problem we are faced with is a lack of support systems in place to allow people and their families to experience life, and end of life, in a comfortable respectful way,  a way every human deserves.

But that is very expensive.  There is a much cheaper alternative. Enable people to choose death. And then slowly make it  the only plausible choice.

At the beginning of this very long post, I said I was conflicted. From what I’ve written so far, you might think I am not conflicted at all, that I am firmly against it. That’s the funny thing about writing a blog, sometimes you learn about yourself as you’re writing. I guess I am against legalizing euthanasia. I have struggled with it because I know there may be situations I can’t even fathom. There may be someone reading this and who will reply with a heart wrenching story that will point out what I perhaps have not thought of and why it should be legalized.   But I can’t ignore my fear of where this path leads. It’s not a movement I can support.

If you’d like to read some more this site, Canadian Physicians for Life, refutes some of the myths that pro-euthanasia activist use in their arguments. It contains some valuable perspective.

19 Comments leave one →
  1. Andrew permalink
    March 10, 2010 7:09 am

    I think you critically underestimate the general predisposition for humans to want to live. Yes, there are those that don’t want to suffer through pain or be “undignified” (which should be left up to them to define). What you’re forgetting about are the overwhelming majority of people that want to live.

    Not only that, to suggest that medicine will simply cease to progress and even regress is purely fiction. Kids will always get sick, and parents will always want cures. Parents will get sick, and their kids will always want cures. Grandparents will get sick, and their children and grandchildren will want cures, as well as ways to make them more comfortable, mobile, independent, etc.

    You can’t look at this issue as a single bell curve trending across an axis where “cure me” and “kill me” are opposite ends. No, if anything there will be multiple statistical groups. Yes, one small one will (and already is) trending towards (if not at) the “kill me now” stage. But to suggest that everyone will go that way – and that society will WANT them to go that way – is fighting against the ingrained biological drive to survive. Heck, your fear on this issue proves it – you’re already fighting against the notion of letting others kill themselves. If that’s not a strong signal of how ingrained humanity’s will to live is, I don’t know what is.

    • March 10, 2010 11:45 am

      First off you are putting words in my mouth. I never said it was a” single bell curve”. And I never said medicine as a whole will regress. Certain AREAS of medicine, over time, may be underfunded as a result of reduced demand. Do you honestly think large drug companies will spend time and money on a declining market? Will research into medical devices to prolong and improve the life of those with debilitating diseases continue if there is no profit to be made because the market is so small?
      I’m not talking about overnight here. This is over decades. The shift can happen. Of course everyone wants to live. I’m not underestimating that at all.
      You seem to be missing the point that the shift is in what society considers a life worth living. It’s already happening in a country like the Netherlands with a social service structure that puts even Canada to shame, what do you think happen here or in the US where the all-mighty dollar rules?
      So 5 generations from now, if it’s generally accepted that being in a wheelchair or being 85 or having Autism is not a life worth living, do you think the public would support higher taxes to provide the support systems needed to assist these groups? I would suggest no. And so it’s not a question of will many of these people want to continue living, but will the choice be made all but impossible for them, leading to depression, leading to the offered solution, which only increases the trend.

      • Andrew permalink
        March 11, 2010 2:51 pm

        I had a long reply composed, but you know what I just realized? You’re afraid of something, and I’m not going to be able to talk you down from that. I don’t share your concerns, but they’re yours to have.

        • March 11, 2010 4:27 pm

          I don’t need “talking down” Andrew. Please don’t imply I am irrational because my views differ from yours.

          • Andrew permalink
            March 12, 2010 11:56 am

            OK, perhaps “talking down” was the wrong phrase. I am not implying – or at the very least, do not mean to imply – that you are irrational.

            C’mon, I’m trying to agree to disagree here. Let’s not make it personal or get into a pissing war. That’s wasted energy that could be used plotting Vio… er, used towards a constructive and engaging hobby. Yes.

  2. March 10, 2010 11:17 pm

    Wonderful post, Syl.

    One thing that I have more questions about is the individual’s perspective on the type of death/type of life that they want.

    Take my mother, for example. She is a very very modest woman. So modest, in fact, that she commented that my son was the first man to have ever seen her without her shirt on except for my dad, and that it was weird. I too thought it was weird. My son was 2 at the time. And was thrilled that “Nana had nunus” (what he called breasts and breastfeeding).

    She won’t pee in front of anyone. She can handle public bathrooms, but not if someone she knows is in the next stall. She will not change in the same room as me. She is very personal and hushed about her “business”.

    She had to nurse her mother through the dying process 2 years ago. It was hard. And she said to me “I never want to go through that. I don’t want anyone seeing me like that. I’m horrified that you will have to wash me”.

    Whereas me – I don’t really care who sees me naked. I assure you, I do not look good naked. But I have had more people seeing my nether regions during my deliveries. And I see the body’s “yuckiness” as just part of being alive.

    I am not concerned with someone having to wash me, or change me. I have different issues, but certainly not the same ones as my mother. I don’t want to hurt. I don’t want to have no brain function, but be kept alive. But if I have brain function…I want in!!!

    So where does the patient’s wishes fit in?

    And can those wishes be protected?

    • March 11, 2010 11:52 am

      Very thoughtful response and part of what I struggle with. How do you fulfill the desires of the individual without endangering the most vulnerable of a society. Some will say you just put rules and regulations in place, but it’s not that simple, the rules don’t work. I think I feel a follow-up post coming.

  3. Kylie permalink
    March 11, 2010 10:10 am

    Sylvain, let me say that when I clicked the link from Violet’s blog and started reading this I WAS one of those people who thought it was O.K. What you wrote here has lead me to change my opinion on this issue.

    Thanks! 🙂

    • March 11, 2010 11:48 am

      Wow! Thank you Kylie! (and just so you know I have no control over the picture that is chosen for you, I have no idea why that one came up 🙂 )

  4. semiorganizedchaos permalink
    March 11, 2010 3:00 pm

    i highly value life, but i do support someone’s wishes to die. what gets it for me is the pain.. if someone is suffering in horrible pain and meds aren’t working to keep them comfortable, then i think that a self-chosen death should be an option. of course, i think that all options should be explored, and counselling a part of the decision making process. but who am i to say that someone in horrible pain should *have* to keep living?

    as for ‘quality of life’ and ‘dignity’, i think those two terms are up to the individual to decide.

    very interesting topic, i quite enjoyed reading this post and everyone’s comments.

    • March 11, 2010 4:42 pm

      Thanks for the input. I agree with you on the pain aspect. One of the reasons I struggle with this.

  5. March 11, 2010 4:47 pm

    Hi Sylvain,

    On The Right To Die With Dignity:

    I interpret the right to die with dignity a bit differently.

    Which is more dignified:

    1) A peaceful successfully lethal injection where my last sights and sounds are of my nearby loved ones?

    2) Being alone in a hotel room slobbering down the barrel of a shotgun; knowing I’m going to make a hell of a mess for the staff to clean up what with the bloodstains, voided bowels and the like; knowing that my next of kin are going to have to go identify the corpse; hating that I couldn’t say goodbye to my loved ones face to face because they could be prosecuted for not turning me in.

    3) I am bedridden and my attempt to kill myself fails due to physical lack. My suffering increases even more as a result of injuries from the attempt and any unwanted attention that the failed attempt attracted.

    I’ll take option one over options two and three any time.

    On Snowballs Rolling Down Slippery Slopes:

    The problem with the snowball argument is that it assumes a constant acceleration resulting in a sudden cataclysmic deceleration. I propose that conditions in Canada are not conducive to such a scenario.

    The same people bitching about all the money the old and infirm cost them and their government are *surprise* going to get old and possibly become infirm. At that point they’ll be bitching about how things have gone downhill and how they’re not getting the same quality of care.

    Last time I checked old people can still vote. They also have lots of time on their hands to write letters, form coalitions and be a major pain in the ass to the body politic. If you think bureaucracy is slow try a peaceful protest by elderly men and women shuffling along wheeling tanks of O2 behind them. Also among the ranks of the infirm are those who have amassed substantial funds and influence in circles of power.

    In short, you don’t live in a dictatorship (yet.) Gradual social changes are inevitable but it seems unlikely that self-interested groups of people are going to allow the dystopia you describe to fulminate as long as the socialist parliamentary democracy you live in continues.

    On Research:

    Research is nice. I’m all for it. However, once you look a little closer you find that research is primarily driven by profit and is not goal based in the broad sense. If you’re a researcher by trade are you going to do something nebulous like “find the cure for cancer” or are you going to study bits of arcane tangential esoterica so that you can keep the government grants trickling in and as a result maintain your tenure at a University?

    On America:

    The reason why we don’t euthanize our old people is because they’re so goddamn profitable. Old people in general have retirement funds, pensions and assets. What’s better, when they die the bill collectors get to snatch up anything before the inheritors AND the government still gets taxes from the inheritance. The beneficiaries might not even see a dime of their inheritance and may end up paying taxes out of their own pockets to boot. In America, legalizing euthanasia isn’t immoral, it’s bad for business and government.

    The rest of the infirm who were unfortunate enough to be born into an unwealthy family or a state with few social aid programs end up in Section 8 housing with the criminals, social rejects, drug users and welfare moms, die on the streets or commit suicide.

    On a Lighter Note:

    Spring is almost here. From what I can tell, the suicide rate appears to be highest in the month of May so for some people there are a still a few more months before their departure – Yippy Skippy!

  6. March 11, 2010 6:21 pm

    R, thanks. Wow, great input and thought provoking points.

    I will confess I checked your point about May having the highest suicides. It’s true of course, but I checked because it just doesn’t seem to make sense. Weird. If you asked anyone I’m sure they would guess the dead of winter. (no pun intended).

    • March 11, 2010 10:45 pm

      For some people it takes a lot of will to overcome the survival instinct. My guess is that in the dead of winter these people lack the energy to fight the inertia formed by their lives. When early summer rolls around a significant number of people are “up” enough to successfully kill themselves and alter the statistics for May.

      I wonder if there has been a study conducted to determine if this is the case?

  7. stroppycow permalink
    March 12, 2010 1:02 pm

    FWIW I have a friend who is a palliative care nurse, I think I prefer her definition of what dying with dignity means to taht of the legislator. She has been asked numerous times by patients for help to end their lives, she did not do so, instead with the help of the other medical staff in the hospice she has implemented plans to help manage the pain and the discomfort the patients were in so that their final days were bearable. She spent time talking to the patients and discussing what worried them about death and where possible provided communication with the patient’s family, social workers and at times lawyers to deal with financial matters. In every case so far, within a few days of making the wish to die, the patients then told her they were glad she hadn’t followed their wishes because they were glad to have had the extra time.
    I’d rather the legislator didn’t spend too much time discussing when it is ok to kill somebody (the “dying with dignity” label is a lovely euphemism isn’t it?). I’m very uncomfortable with politicians who have a vested interest in not prolonging the lives of unproductive people making these sort of decisions on behalf of individuals.
    How many times would a person have had to express their wish to die? What about chronic depressives? How about people older people who are feeling the pressure from relatives over the cost/burden of their care?
    I’d rather more time was spent working out how every medical staff can be given extra training and how money can be found to provide quality palliative care and improved occupational therapy services.

    • March 12, 2010 4:10 pm

      Fantastic comment!! You stated it better than I could have. Thank you!

  8. March 17, 2010 11:28 am

    Syl, this one is a topic full of emotional pitfalls which can turn a rational discussion into yelling and screaming.

    Here’s my take on it.

    In my opinion, the ‘dignity’ referred to in this context is an autonomy, a self-determination, to which we are all entitled. I agree that we are all entitled to an end which we–each of us as individuals, not some collective which has decided for us–see as dignified. This is an individual right, not something which is even assignable to anyone else. After all, how can I be self-determined if I tell you to determine for me? Then I would become Syl-determined.

    It is only prudent that any governmental involvement have a series of conditions which attach. In my mind, someone saying in the midst of incredible pain, “Please kill me!” is not a cause for euthanasia, nor should it ever be okay to comply with someone’s plea in such a circumstance.

    As one of your earlier commenters mentioned, palliative care and counseling are wonderful methods to allow the terminally ill the chance to be at peace and make a decision which is well-considered.

    At some point, though, it does return to the primary concern, one of departing on one’s own terms.

    I believe it is time for this kind of decision to be legal. The obvious advantage to spelling out the conditions under which someone may have their life ended via the assistance of another is that it stops the “make it up as we go along” kind of thing which goes on a great deal today.

    By carefully laying out the steps–and I believe doing whatever is possible to ease pain has to be a first step–it would be possible to allow someone to make this choice on their own, in a controlled environment, and with end-of-life means which are sure and swift.

    The argument that by the state acknowledging a right which every individual already has–how many people do you know who are in jail for committing suicide??–somehow grants the state any sort of right to, itself, start killing off citizens is a fear-based argument, not one which has carefully reasoned basis I have seen.

    Let’s keep two issues separate, since they are two completely different and unrelated ones: right to self-determination, and what to do about lengthening lifespans and diminishing availability of long-term care.

    Example: would I tolerate a hospital administrator, he concerned about the fact that my parent was on some sort of government-sponsored care which made the hospital less money than would some other dying person who was rich, access to my parent to offer end-of-life counseling?

    Of course not! Clearly, there exists a conflict of interest, as the administrator wants the bed to give to the rich person.

    So, we have to start with agreeing to separate the two issues.

    Once the two are separate, and they certainly are today, then there is no reason to fall for the “death panel” arguments we hear in the US.

    It is my right to choose when I shuffle off this mortal coil. I should not lose that right simply because I am no longer physically able to end my life. If I meet the conditions necessary to prove my decision is one made while not under duress or undue influence of any kind, I should be able to ask for help without endangering the person who helps.

    As to your concern about the future, Syl, I share it to a degree. And, at the same time, I see what wonderful people my kids are turning out to be, and I have good reason to hope the world will actually be a far better place in 2065 than it is today. It will, almost certainly, be a world neither of us would recognize, but a better place.

    I don’t know if it will be so by 2065, but I don’t doubt that there will come a day when people will live as long as they want to, and when they finally decide to exit and see what is on the other side, they will leave. Why? Because we will have reached a point where medical technology can solve any problem a body can have, be it with a treatment or a replacement part.

    If one can live 300 years or 500 years or 900 years, would there be people who decided enough was enough? I’ll bet some would.

    Don’t let one word of this long comment let you think I don’t appreciate your concerns, Syl. They are valid and worth repeating. If no one remembers your concerns, then we do approach a day when we start down that slope.

    At the same time, your concerns will not keep me from ending my life on the day I decide to do so. Today, I cannot fathom reaching such a decision, as I am having far too much fun right here on Earth.

  9. April 14, 2010 4:20 pm

    Happy Birthday!

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