A Right?

(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: http://www2.parl.gc.ca/HousePublications/Publication.aspx?Docid=3895681&file=4

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.

http://www.physiciansforlife.ca/html/life/suicide/articles/euthanasiarefuting.html