All law students come across the Sue Rodriguez case at some point, and the policy reason for forbidding assisted suicide — that it will be abused by caregivers. My Constitutional Law professor said it was obvious why we don’t allow it and despite much pondering, I still  do not understand. It is all the more poignant because a good friend of mine is in Ms. Rodriguez’s shoes — she has ALS; and it is no surprise to me that she would like to have her life ended at the time of her choosing so as to avoid the intense suffering that will come if the disease progresses to its final stages.

So I ask this question: How is there room for abuse if the person whose life is being ended requests that her life be ended and chooses the time that her life is ended? I take it as obvious that assisted suicide should only be permitted for certain types of degenerative ailments like terminal bone cancer and ALS where there is no chance of recovery and the later stages of the disease bring about the kind of suffering that no living creature should be asked to endure. Someone who recently acquired a spinal chord injury and does not like the idea of life in a wheelchair, for example, should NOT be granted an assisted suicide. As well, for fear of abuse, we should not permit caregivers to request an assisted suicide on behalf of someone who cannot communicate. This much I understand.

But why do we force those who are incapacitated beyond the point of having any meaningful quality of life to suffer the final stages of a disease like ALS against their own wishes? To me this is inhumane. I would like to share with you the words of my friend Amy (fyi Carolyn is Amy’s daughter):

‘It’s not that I’m afraid to die; I just don’t want to be there when it happens.’(Woody Allen)

During a recent telephone conversation, I was reminded of an item I saw for sale once in the New Yorker magazine: solid rosewood pole capped with silver, 11 feet in length for those people who wouldn’t touch anything with a 10 foot pole.

And so I touch on the thorny debate on death – virtual pole in hand.  It is a slightly different perspective than a healthy person’s approach, I grant you, but I imagine many of the questions would be the same.  Perhaps, too, after being immersed in the Tudor series over the Christmas holidays, one realizes that rationalization can hide a multitude of sins and beliefs and the thirst for wealth and power has changed little in the intervening centuries.  Should one, like a queen endure until dethroned (which sounds simple enough), or take the pre-emptive route of choosing the time and place of death before an even more hideous one can be devised?  I routinely debate whether it takes more courage to live with something as debilitating as ALS or more courage to choose death on my own terms.

At this point, in 2009, my debate involves an innocuous phrase “quality of life” rather than being persecuted for religious beliefs or witchcraft or, as a woman, creating controversy simply through holding an opinion.  It also involves the concept of suffering.  How do we quantify such a thing to say enough is enough and does physical suffering that we can see outweigh mental suffering that we tend to ignore?  And what about mercy?  Anne Boleyn purportedly had her scheduled being burnt alive commuted to beheading with a really sharp sword.  One could argue whether that was merciful.  Conversations at deathbeds routinely include comments that a quick and timely death for a person who has no chance of recovery from catastrophic circumstances is merciful but Lord help you if you wish for it yourself and you are too disabled to do it.

We do not have the liberty of getting a verbal answer from a beloved cat or dog when asked if they would like to live in pain or be euthanized and, emotion aside, the decision is often a financial one.  I know it can be considered crass, even unethical to many but if my care, presuming I could get it without bankrupting my family, costs thousands upon thousands of tax payer dollars and I want to die, why can’t I and have that money be used for people who have lives to live and can be saved?  Another aspect not addressed much is the fact that a planned death would allow my annoyingly healthy body parts (heart, lungs, liver, kidneys) to be given to someone who would die otherwise without them.  My life’s tragic turn of fate would be of real value to several people and I would know that my death also meant life.  In the end, since I truly am in Sue Rodriguez’ unenviable shoes, I echo her famous question, whose body is this?  I would also like to point out, I have not committed a crime (treason anyone?) so should not be forced to endure the consequences as if I had.

If there is one redeeming quality in suffering ALS, it is that, in most cases, a person dies in their sleep overcome by carbon dioxide; an effective analgesic.  At which point the suffering and quality of life issues become too much to bear in between “the now”, where I can still communicate and do some things and “the then” of lying there 24/7 and receiving whatever my senses are capable of taking in and relying on the care and whims of those who will look after me, is the one hundred thousand dollar question.

I am not advocating death; I am an advocate for choice.  The concept of choice when it is about birth or death is a highly emotionally charged, ethically challenging, controversial and divisive topic.  Despite all of it, people are born and people die every second of every minute of every hour of every day.   Last year of all the people who visited hospitals in Canada, 225,000 of them got something else that they didn’t go in for and of those, 8,000 of them died from the new invader…and they didn’t want to.  And the rule-makers are worried about literally a few people who want to hasten their death?  Something is wrong with this picture.

So why have I chosen now to share my views on this heavy topic?  In mid-February, Carolyn and I spent several hours with a production company filming footage for a PSA TV commercial and a documentary on this subject.  Because it is a difficult and mostly ignored topic, it is due for a public forum and they wanted to interview people and organizations who have to deal with death on the front lines.   Spearheaded by an organization called Dying with Dignity, I was approached to participate.   I was pleased that I was able to be succinct and articulate enough despite my slurry speech but I have had a lot of time to think about this and it certainly opened the dialogue for Carolyn and I to discuss it; agonizing though it may be.   So, coming soon on a screen near you…….

Oh, and for those of you who don’t have wills; get one, now, for you forfeit so much to bureaucracy without one.  Write your wishes down already (cremation, Beethoven’s 9^th Symphony performed live, non-resuscitation, open bar, Aunt Mabel in sequins tap dancing on a white grand piano).  Those left behind would rather not guess your intentions and you may hate lilies – still.

I am not a Hollow Man and T.S. Eliot may end with

This is the way the world ends

This is the way the world ends

This is the way the world ends

Not with a bang but a whimper.

But not in my world.

Namaste and Amen,

Amy Doo

> : )