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Wednesday, March 14, 2012

How to Die in Oregon

I finally got to watch the critically acclaimed documentary How to Die in Oregon. Based on reviews I read, I knew the documentary would be heavily skewed in favor of assisted suicide. However, I thought there would be a modicum of dissent--a few people would be given the chance to speak about why they are opposed to assisted suicide. I was wrong. The film is grossly biased in favor of assisted suicide, specifically in Oregon, the first state to pass so called death with dignity legislation. Compassion and Choices, the former Hemlock Society, figures prominently in the film. In fact I would go as far as to maintain the documentary is akin to an info-commercial for Compassion and Choices. The documentary leads the viewer to think assisted suicide was the one and only option available for those nearing the end of their life. Those opposed, Randy Stroup for instance who was denied coverage for chemotherapy, do not come across as reasonable. Statements made by Stroup such as "The guy who wrote this letter should be sent to prison for life" are not helpful.

Reviewers gush about How To Die in Oregon. For example Jeff Shannon in reviewing the documentary wrote that it was "one of the most historically significant documentaries of this still-young decade." All praise for the documentary is based on a simple premise that is not questioned: we humans have something called dignity and we want to control our lives when we are perceived to be losing said dignity. What is not addressed or even mentioned is what exactly is dignity. To me, dignity is a concept that is supposed to be utilized when moral and ethical conundrums arise that call into question basic human rights. Dignity is an extension of what we Americans love to celebrate and fiercely defend--independence. We want to control how we end our life. On the surface this makes sense. However, delve deeply into the debate surrounding assisted suicide or death with dignity and problems abound. Autonomy is tricky business.

By far the best and longest review of How to Die in Oregon was written by Jeff Shannon in the Chicago Sun-Times in May 2011. Shannon is a quadriplegic, 32 years post injury and resides in the Seattle area. In reviewing the documentary Shanon wrote about his experience as a paralyzed man encountering an expensive and inhospitable health care system:

"I've shared these personal details because my life experience -- and my near-death experience -- have convinced me that I want to exercise control over how my life ends. I want to be the one who determines when "my time" has come, even if that means dying naturally or, as some might prefer to phrase it, "letting go and letting God." I may not have a terminal illness now or later -- and I think it's appropriate that non-terminal paralysis legally disqualifies me from the option of "physician-assisted suicide" -- but I'll know when my "quality of life" has reached its lowest ebb. I've almost been there already, so I'll know, with absolute certainty, when I've truly reached that limit. I won't allow anyone else to determine what "that limit" is".

Shannon, who I met last summer and had a long chat with on the Seattle waterfront, and I share much in common but diverge in that I do not believe we are ever as autonomous as he would like to believe. Shannon seems content with the idea he will not be considered terminally ill or lacking a dignified life as a direct result of his paralysis. I do not share this sentiment. In fact I would argue in a profit driven health care system people with a spinal cord injury and others with a profound disabilities are an at risk population. By at risk I mean we may be encouraged to end our lives with "dignity". Shannon and others in favor of assisted suicide would skoff at my concerns. I would maintain John Kelly of Second Thoughts, a Massachusetts based organization against assisted suicide is correct in noting that "These bills sound good in some kind of a perfect-knowledge fantasy universe, but when we get down to real life they become a disaster".

Like it or not, the assisted suicide legislation in Oregon has had a sweeping influence on how Americans die and perceive death. Washington passed comparable legislation, Montana allows assisted suicide as a result of the Baxter Case, and other states are debating the matter (Vermont and Massachusetts). No doubt our health care system handles death and the end of life poorly but assisted suicide legislation is not the answer to improved end of life care. More to the point why do people choose to die? According to the Oregon Health Division 2011 report on Death With Dignity people sited the following:

Losing autonomy
Less able to engage in activities making life enjoyable
Loss of dignity
Losing control of bodily functions
Burden on family, friends/care givers
Inadequate pain control
Financial implications of treatment

I have experienced each and every statement above. Paralysis limits my autonomy. I cannot engage in activities I once enjoyed. I have tenuous control of my bodily functions. I have been a burden to my family and friends. I have experienced gut wrenching pain. I have spent a disproportionate amount of money on my health care. What is mising from this litany of disaster? Dignity. I have never lost my sense of dignity. Not once. But that is only how I think about dignity. There is another side to dignity--how am I perceived by others. Society has what I call selective blindness. It is very hard not to notice a wheelchair but society seems adept at ignoring the human being sitting in the wheelchair. Avoidance, stares, awkward social encounters, demeaning attitudes are all within my realm of daily experience. My self esteem takes a hit at every social transgression but I maintain a firm grasp on my dignity. When I assert myself as a person with dignity, question others when my civil rights are questioned or ignored, I win few friends and make many enemies. But that is my life, a life I accepted long ago. Who else can I rely on? Not my friends. Not my neighbors. Certainly not the government. How very American of me! Autonomous to the end. Well, sort of. Again let me quote Shannon to highlight where we diverge:

"I watched "How to Die in Oregon" twice, both viewings intensely informed and influenced by my own experience, my own life and my own opinions about how I prefer to see it end. As a quadriplegic faced with new and serious challenges, I don't feel threatened by Richardson's film because I'm not afraid of dying. I've never felt that I was "better off dead," and because I haven't "reached my limit," I have no desire, legally or otherwise, to hasten my demise. To these eyes and ears, there's nothing in "How to Die in Oregon" -- or in Oregon's law -- that suggests that I should do so."

I hope Shannon is correct. Really I do. But I do not share his sense of well being nor do I think people that viewed the documentary are well informed. Unlike Shannon, I feel threatened. In fact every time I see a physician I have never met I am fearful. I would never dream of entering an emergency room. Simply put, every time I access the health care system I am aware my presence is not wanted. I fear someone, a highly educated physician or health care worker, will decide I have suffered enough. In this scenario I will be denied life saving therapy a person that walked in the door would be given without thought. I am not exaggerating. I experienced this first hand. I have a paper coming out in the Hastings Center Report detailing my experience. I am unabashed in acknowledging my fear. It is very real and lives are at stake.


Phil Dzialo said...

I once read an article in "The Ragged Edge" that all the reasons given in the Oregon study, ie. autonomy, dependence on others, being a burden, dignity, etc as reasons for choosing assisted suicide boil down to one word: incontinence...this is the outward manifestation and summary of the reasons. I wonder if this "socially induced shame" is at the root of all giving up? Just wondering...
PS We have a great anti assisted suicide movement here in MA which is gaining momentum to oppose the 2012 ballot initiative called Second Thoughts, growing by the day! TG!

Greg Snider said...

This law has been in effect in Oregon for the past 17 years. You must have 2 doctors diagnose you with 6 months or less to live. You cannot simply choose to die because you are experiencing the list of symptoms presented in your blog. The law has not been a disaster in Oregon, but rather a comfort and relief to those suffering from terminal diseases and their families.

We made this film to show what it means to exercise this very unusual legal right - an experiential film of the mental and emotional aspects that go into the decision to end one's life using this law. Everyone in the film was faced with the choice of using meds to end their lives - or were acting to pass a similar law fulfilling a promise made to a loved one who desperately wished for this law.
We attempted to make a film that explores these highly unusual human dilemmas within the context of the unavoidable nature of death.

Perhaps there is a film yet to be made regarding the pro and con sides of this issue, but this argument was settled in Oregon years ago and was never meant to be the central point of this film.

Thanks for your thoughts,

Greg Snider
Co-editor, HTDIO

william Peace said...

Greg, Thank you for your polite reply. The list I referenced came directly from Oregon State. These were the primary reasons people with a terminal illness chose to die. I am well aware of the "safe guards"--only people with 6 months to live can choose to legally end their life. This is at best a vague diagnosis. I am also sure Compassion and Choices physician referals include physicians who support assisted suicide. Yes, the film shows how the law is followed. But I would contend it is long on emotion and short on facts, any facts that would raise serious concerns. Your point about the film not being about the pros and cons of assisted suicide but rather about the law in Oregon alone is well taken. Thus no attempt at balance was made. So, I am in a way critiquing a film that was not made. I am afraid we are going to have to agree to disagree about the merits of the legislation in Oregon. I do appreciate your comment particularly since it was done in a respectful manner.

Phil, I quoted John Kelly of Second Thoughts in Massachusetts in my post. I too read his article published many years ago in the Ragged Edge on incontinence. One can be incontinent and still have dignity. It is after all a plumbing problem many, myself included, deal with. Dignity has nothing do to with how we control our bodily functions. Socially constructed shame does not come from within but from larger social forces.

Catherine said...

Keep it up. We need voices and writings like yours. These documentaries, articles, talk shows, are terrible in that they present only one side of an issue and it is a critically important issue that needs a whole picture approach.

A lot of people I know would not want to live any longer if they lose the ability to care for themselves and are totally at the mercy of others for their care. When those "others" are people who do not want to care for them and do so in a way, giving them a type of life they do not want (them being the dependent), and no hope for any change is out there, life becomes painful to the point of unbearable. That is where people differ, is in the pain, psychic as well as physical they want to bear, and no one can measure another's pain level.

Those who are not in the disabled category can end their own lives and many do so. Some who are disabled are not able to do so without assistance. That such assistance should be permitted to the disabled when it is blatently, flagrently and expressedly illegal and an outrage to provide to those not so categorized as disabled becomes the crux of the issue. To me, it's a no brainer. It's illegal. It's not a right that one has, and I don't know who ever came up with the idea that it is a right. It's not legal to commit suicide, and those who attempt it and do not succeed should be prosecuted for it. It is attempted murder. ANyone assisting in it is an accomplice to murder if successful.

The answer that is hard to say, when someone is truly in paid and is in a situation where most of us definitely do not want to be and fear being, "Tough luck". I could not say it to my father as he died a very painful death, and, yes, it hurts me to this day that he did. BUt that is what it is; "tough luck".