"How to Die in Oregon" plays on HBO on May 27, 29 and 31 and June 1 and 6.
Click here for HBO showtimes.
I've been encouraged to write autobiographically in this forum, so bear with me, dear reader. We've barely been introduced, and this time it's personal. I'll be sharing some thoughts about HBO's extraordinary new documentary "How to Die in Oregon", but first, allow me this indulgence:
When my father died four months ago at the age of 79, I sat beside him in my wheelchair as his death drew near. I couldn't hold his hand and he couldn't hold mine, so I gently touched the parchment-like skin of dad's withered right arm while my older brother, standing on the other side of the bed, leaned over and quietly suggested to our father that this was "a good time to go."
Dad must have agreed, because a few seconds later, he did.
He went gently and peacefully after many hours of slow, labored breathing. Only three weeks had passed since he'd been definitively diagnosed with bowel cancer. In a case of fortunate timing, we'd brought him home from the hospital about 30 hours earlier; we knew he preferred to die at home. Apart from the morphine drip we'd been trained to operate by compassionate hospice-care advisors, there were no lethal drugs or physicians involved.
(Above: Jerry and Jeff Shannon, 2009)
By circumstance or design (I can't say which), just the three of us were together when my dad died, in the intimate condominium dad had shared with our stepmother for many years. My brother had dimmed the low lights lower just a few minutes earlier; he knew that reducing sensory input is a comfort to the dying. The local classical music station had been playing for hours at low volume. I place no particular significance on the fact that that Haydn's "Surprise" symphony was playing when dad died. It just was.
Dad suffered from severe discomfort before he died, but his pain was well-managed and all of us, including my sister and stepmom, had time to properly say our goodbyes, knowing they'd been heard and acknowledged. I can honestly tell you that my father's death was profoundly beautiful, and occurred at precisely the right moment, no sooner or later than it should have.
When my mother died from lung cancer in Seattle in 1988, at the far-too-young age of 56, she'd been ravaged for months by a brutal combination of chemotherapy, helplessness and extreme frustration. Six months earlier she'd been told she had six months to live, so at least we all had the comfort of an accurate prediction. I had visited her on the day she died, convinced I'd return before that moment arrived, but early that evening she died peacefully and alone in her hospice room, where a nurse had left her just a moment before. I later learned, to my surprise, that this was by my mother's request. A small group of family and friends had gathered in a nearby room, and the nurse informed them when mom's death was confirmed.
For both of my parents, I feel that death came with dignity and respect for the lives they had lived. There's just once crucial difference: My father's death was natural, and his decline was not unduly prolonged by extensive (and expensive) palliative care. My mother died naturally, too, but ever since her death I have held firmly to the conviction that she should have died sooner -- perhaps as much as two months earlier -- and I think she might've found that option appealing. In Washington State, in 1988, she didn't have that option.
As I write this, I am one month shy of my 32nd anniversary as a "PWD" (person with a disability). Clinically speaking, I'm designated "C-5/6 complete quadriplegic," paralyzed from the upper chest down by a spinal cord injury that occurred on the coast of Maui in the summer of 1979. I was three weeks shy of my 18th birthday, and had graduated from high school two weeks earlier. Accompanied by a group of fellow graduates, my trip to Hawaii was a graduation gift from my parents.
When I was first injured, lying face down in the Maui surf, in shock and on the verge of drowning, I had a genuine near-death experience. I won't pretend to know what happens when we die, but I've been to the threshold and I've had a sneak preview. If you want to know what a near-death experience is like, ask a survivor: The details are profoundly similar, suggesting some kind of afterlife that is physically and spiritually universal. If you haven't already, take another look at Clint Eastwood's "Hereafter": Remove the whooshing sound effects, and the near-death experiences depicted in that film are uncannily accurate. Nearly everyone who's had this experience recalls an overwhelming sense of peace and acceptance, and ever since that day in 1979, I've had no fear of dying. My N.D.E. is a gift that keeps on giving.
With the rock-solid support of my devoted parents, I gradually adjusted to life as a "quad," and for 32 years I've made a modest but for the most part comfortable living doing something I love. I've lived "A Life In Movies" (to borrow the title of Michael Powell's autobiography), and by any rational measure it's been an interesting life, fraught with difficulties but consistently enjoyable and entirely worthwhile.
Then things changed. Beginning in 2009, my paralyzed body started to stage a rebellion. Bladder management is a major factor of living with paralysis; now mine was giving me very serious trouble. I later learned that it's normal for quads to experience additional difficulties after hitting their 30-year mark. (I wish I'd been warned!) During 2010 alone, I was ambulanced to emergency rooms on ten separate occasions due to autonomic dysreflexia, a complication unique to spinal cord injuries that causes (among other traumatizing symptoms) extreme hypertension -- what I like to call "neurological mayhem" -- including dangerously high blood pressure that escalated, in my case, to potentially fatal readings of 260/130.
In less than a month, I'd gone from 30 years of near-perfect health to the constant threat of serious setbacks. Medical bills stacked up like junk mail, depleting my savings. After that tenth ER visit, in late September, I told my brother, with absolute sincerity, that I didn't want to live, if this was what life had in store for me. But after a brief stay in the hospital and additional tests on my overworked heart, I was stabilized by antibiotics, got discharged, and got on with the business of living.
Today I'm living a "new normal" that's a lot more troublesome than my "old normal." Like many others in our current economy, I'm in the process of radical downsizing. I've made a difficult transition from a manual wheelchair to a motorized one. I urinate through an in-dwelling catheter that's a constant source of irritation and potentially dangerous bladder infections. I take several medications for pain and muscle spasms, and they all have problematic side effects, with one exception: Marijuana. It's cheaper and more benignly effective, I'm fully authorized to procure it from a local dispensary, and my light, occasional use allows me to postpone or even skip dosages of the other "legitimate" medications. Its only side effects are a mild buzz and the occasionally irresistible desire to gobble M&M's while watching "Avatar" on Blu-ray, if only for the eye-candy. (And while I'm certain there's a portion of that film that syncs up with Pink Floyd's "Dark Side of the Moon," I won't be the guy who goes looking for it. I've got better things to do with my time.)
So, you may justifiably ask, why spill my guts as preamble to a discussion of HBO's "How to Die in Oregon"? It's simply because I have no doubt that many people reading this will mistakenly conclude that "It must really suck to be you." (I might agree on bad days; mostly I won't.) Some may even feel that I'm "better off dead," another mistaken assumption that caused many disability activists to protest against Eastwood's "Million Dollar Baby," which ends (spoiler alert!) with a newly-injured quadriplegic's hoped-for euthanasia. (For the record: While it may be true that suicide rates are statistically higher among people with spinal cord injuries, paralysis is never the single contributing factor in their ultimate decision.)
More importantly, 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, but if I knew I was spiraling downward with no chance of improvement, would a few more days, weeks or months make any kind of difference?
I know these comments will be hotly opposed in some religious, political and even disability-related circles, but it's for that very reason that "How to Die in Oregon" will likely be viewed, in retrospect, as one of the most historically significant documentaries of this still-young decade. "Must-see" is an over-used phrase in movie reviews, but "How to Die in Oregon" truly is a film that everyone (even and perhaps especially younger viewers, with parental supervision) should see, ponder, and openly discuss.
It is a challenging yet beautiful film that many will start watching and not want to finish. It won the Grand Jury Prize for Best Documentary at Sundance this year, and it deserves the same massive audience that flocked to theaters to see "An Inconvenient Truth," because it addresses an equally inconvenient truth: We -- and by that I mean all of humanity -- need to examine death and dying with our minds wide open.
We need to reconcile "death with dignity" with the poorly-worded, arguably inaccurate phrase "physician-assisted suicide," and that puts all of us in the same position we faced during the fight for abortion rights. This is not an issue that will ever be resolved in our collective hearts and minds; it will only be legislated according to majority vote. But there's no doubt in my mind -- and in the minds of those who made and participated in "How to Die in Oregon" -- that Oregon (and now Washington, where I live) will not be the only states to vote upon and pass legislation on this deeply contentious issue.
Here's how it works, as dictated by law in Oregon since 1994 (following precedents set by Switzerland and the Netherlands): Wanna-be Kevorkians need not apply. Lethal injections are strictly forbidden. If you have chosen the time of your death, it's because you've been officially diagnosed with a terminal condition and given six months or less to live. You've stated your preference for self-determined death in writing, on an official form signed by you, your physician, and two witnesses of your choosing. You've been given a prescription (covered by insurance) for Nembutal or Seconal (for what it's worth, the latter costs less), and you have total freedom of choice regarding when -- or whether -- to ingest the lethal cocktail mixed from one (not both) of those ingredients.
You'll have all the time you need to put your affairs in order exactly as you desire. If your condition declines to a point of no return, you can then definitively schedule your "time to go." If you cannot lift and swallow the lethal cocktail independently and of your own volition (it's foul-tasting, so a pleasant chaser is recommended), nobody is allowed to legally assist you, in which case you'll die when "natural causes" take you.
A physician needn't be present to preparing the cocktail or provide moral support; friends and family can be assigned to those tasks, should they choose to participate. The cocktail induces a coma within minutes. Death follows shortly thereafter.
We understand nearly all of this from the pre-credit sequence of "How to Die in Oregon," and as the film progresses we'll understand many of the delicate details surrounding the procedure. I won't spoil that sequence here; you will either find it profoundly beautiful (as my father's death was) or you'll be inclined to stop watching (my advice: don't). This is not a film -- or an issue -- that provides any kind of middle-ground.
It should be noted up front that Peter D. Richardson -- the writer, director and photographer of this film -- never hides where his sympathies lie. "How to Die in Oregon" is fair in presenting its philosophical stance, but it's not exactly balanced. We hear from an opposing physician with a literal-minded defense of the Hippocratic Oath, and we see anti-assisted-suicide protestors on the capitol steps of Olympia, Washington, when the issue (known here as Initiative 1000) came up for a vote in 2008. We also visit an outraged blue-collar Oregonian named Randy Stroup, who is denied coverage for chemotherapy in an official letter that lists doctor-assisted "end-of-life" as one of his remaining options. "The guy who wrote this letter," says Stroup in disgust, "should be sent to prison for life."
Richardson isn't merely paying lip-service to opposing views, but their screen-time is comparably brief. In a film with many talking-head interviews, he provides historical context by including Derek Humphry, founder of the Hemlock Society and author of the suicide guidebook "Final Exit," but he fails to interview leaders from groups like Not Dead Yet, who feel that death-with-dignity legislation could potentially lead to the rise of eugenics and the further devaluing and prematurely-encouraged death of the sick, disabled, or anyone else perceived as a burden to society. (You could argue that the no-Kevorkian policy trumps their concerns, but that's just another debate that this issue provokes.)
Instead, "How to Die in Oregon" does what any film must do to engage the viewer: It tells us compelling stories about what it means to be human. Richardson shows us the kind of intimate dramas that unfold thousands of times every day around the world, experienced by everyone, eventually, but rarely discussed in public, much less on film or TV -- mediums that frequently trivialize death while avoiding its place in our daily existence.
And so it is that we meet interesting, likeable families and individuals in Oregon who (like 500 Oregonians to date) have taken advantage of state law to play out their own end-of-life scenarios. People like Ray Carnay, a velvet-voiced, 84-year old baritone with throat cancer who, after a lifetime in broadcasting, records his own self-written eulogy. He refused to have his voice-box removed as a treatment option, and it brings him great satisfaction to know that his carefully considered words (and their dulcet-toned delivery) will comfort mourners at his funeral.
We also meet Nancy Niedzielski, a widow in Seattle. She's the sensible spearhead of I-1000, prompted into action after her husband Randy suffered through the debilitating humiliation of inoperable brain and spinal cord cancer. Randy's dying wish was for Nancy to promote death-with-dignity in Washington, and as Nancy notes with sad yet forceful determination, her marriage and her mourning won't end until Randy's wish is granted. (It was, by a 59-to-41 percent margin.)
Most of all, "How to Die in Oregon" tells the story of Cody Curtis, a regally dignified, silver-haired 54-year-old wife and mother of two young-adult children, who is riding a roller-coaster of emotions after being diagnosed with liver cancer and given six months to live. She outlives that diagnosis and benefits from palliative treatment (thus crucially demonstrating the parameters of Oregon's law), but it's a temporary reprieve from the inevitable.
Cody is -- was -- a brave and beautiful woman in every sense of the word. We come to know her well, in part because her final months, weeks, and days unfold with familial emotions at peak intensity. Her bravery extends to her acceptance of Richardson's camera, but there's no reality-TV exploitation happening here. It is our privilege to be sharing most (but not all) of Cody's end-of-life experience. When her time comes, as planned by Cody and carried out with the loving participation of her surgeon and family, Richardson takes his camera discreetly outside on that chilly winter evening. Silhouettes move behind the curtained window of Cody's bedroom, and we hear the words being spoken inside.
What you won't see or hear in "How to Die in Oregon" is anyone's actual death. Richardson knows that some privacy must never be violated.
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.
Death is a bridge we all must cross. How we choose to approach that bridge, and at what pace, is what this film is ultimately about. If that frightens you or threatens your delicate sensibility, then watching this film with an open mind becomes even more important.
"How to Die in Oregon" premieres today (May 26) on HBO, with additional playdates on May 29th and June 4th, and on HBO-2 May 31st, June 1st and 14th. On-demand access on HBO-GO is presently TBD.
A Seattle-based freelancer, Jeff Shannon has been writing about film and filmmakers since 1985, for the Seattle Post-Intelligencer (1985-92) and The Seattle Times (1992-present). He was the assistant editor of Microsoft's "Cinemania" CD-ROM and website (1992-98), where he worked with rogerebert.com editor Jim Emerson, and was an original member of the DVD & Video editorial staff at Amazon.com (1998-2001). Disabled by a spinal cord injury since 1979 (C-5/6 quadriplegia), he occasionally contributes disability-related articles to New Mobility magazine, and is presently serving his second term on the Washington State Governor's Committee on Disability Issues and Employment.
Beautifully written review and did its job in getting me to watch this film. Thanks for sharing your personal story and thoughts on this documentary.
Thoughtful, well written review of a touching, powerful documdentary
I just watched this film and really loved it, which may sound strange. But it just made sense to me. I have had the chance to be with several people in their final days. It was not sunshine & roses for them. It was pain, incontience,starvation and more pain! If they had the option I do believe they may have chosen to die with dignity rather than suffer. They were able to plan out most other details of their demise, funeral arrangements and other things. But they could not chose the exact moment of death. I think people should be granted that choice, weather they are able to use it or not. (like ray carnay)
I really enjoyed your article. My only problem is that you have the name of Nancy Niedzielski's husband wrong. His name was Randy, not Mike.
Thank you for writing this article, this is a topic I know is soon going to explode in the main stream.
Shannon: Thanks, Tracy -- There are indeed two Randys in the film, one pro, one con on this issue.
A friend recommended your review here and I'm so glad I found it. Your writing is wonderful and you gave me a lot to think about. I'm going to watch the film with my husband and 15-year-old son. Thanks you so much for writing about this.
I watched this presentation on HBO twice this evening and was very moved by it. I happen to have been the final caretaker for my mother after she suffered a massively debilitating stroke in 1991. After waiting a full year to see if she would have any recovery, she asked me (as best she could, being totally aphasic) to help her to die. At the time I was too afraid to...her disabilities would have required that I actually put the pills into her mouth. I was a young mother with two small sons and a husband, and I was afraid of the potential repercussions. She smiled at me, patted my hand and made me know that she understood. She then stopped eating. I made certain that she knew exactly what would happen. I made certain that she was offered food and hydration multiple times a day. But she was a strong, strong woman -- stronger than I could have been. Death by starvation is an agonizing way to die. Even with some palliative assistance from hospice during the last couple of weeks, she was in horrible pain.
My largest regret in my life is that I did not help her with her request when she asked me to. I can hardly bear to think of what I could have protected her from. I realize that the current law in Oregon would not have helped her position. Maybe now I just care about the results to me would have been after having witnessed what she went through. But ever since then, law or no law, I have always kept a back stock of enough powerful medications that I can make my own final exit peacefully and my way if the need ever should arise. We need to understand that we are kinder to our pets than we are to our people.
What a wonderfully written post. Thank you for your eloquence and for sharing your experience and perspective. I hope many people get to read your words. Keep writing and keep living.
Jeff,
Thanks for your personal comments.
In October, 2010 members of my family & I were in a bad auto accident. We were t-boned by a vehicle who's driver drove through a stop sign slamming into the driver side of our car at at least 45mph.
Now 7 months later my mother (66) bounces from hospital to LTAC to sub acute on the vent and able to move her right side (her arm very well her leg a little) and her left side not so much.
In the early 90s over the course of 1 day Mom became paralyzed. A virus of some sort named Transverse Myelitis. The Docs then said she would never breathe off of the machine or walk again. She told them I KNOW I CAN BREATHE...let me try. They did & she did. Soon after one of her toes moved. Within a few months she went home and was walking, then driving, etc etc. A MIRACLE.
Recently Doctors advised us to seek Hospice which we did. They spoke to us about bringing her in and after 5 days of care turning off the vent. If she continued to breathe she lived...if not...death.
We know NEVER to give up hope. We also know and are lifted by your comments here the decision is hers if at all possible. She is a fighter.
When my cousin & I asked her about the hospice she gave us a look like we were insane. Still...the level of care in these lower level facilities is worrisome. She fights on even though she hates where she is and the pain.
If one does not have HBO is there anywhere else to view the film?
Take care and Stay Strong!
Aaron in Ohio.
Shannon: Thanks for sharing, Aaron -- was it a miracle, or just your mom's strong will and good genes? Either way, good for her. HBO is the only source for viewing the film right now, but it will then go to DVD, Netflix, etc. Look for it!
You've accomplished a lot with just one "review". I have been educated on a subject that I knew little about. Also, I now have a burning desire to see this film. I am now a huge Jeff Shannon fan.
You are a good fit for Rogerebert.com. He writes reviews that sometimes transcend the film and take on a purpose of their own. This "review" is of that mold, and quality. Well done sir. Thanks for sharing.
As someone with personal experience with the Oregon law, I very much appreciate your very moving and personal response to this movie. In my view, you have zeroed in on one very important aspect of the issue: the difference between choice and coercion. Just as no one should ever feel coerced into an act they don't personally agree with, no one should be prevented from making a choice they deeply believe is right for them. The movie shows that the Oregon and Washington laws make choice possible without the least opportunity for coercion. Thanks for having the courage to share your feelings so eloquently.
I watched this film last night and cannot stop thinking about it. Your review was beautifully written and I greatly appreciate your perspective, stemming from your own personal circumstances.
During the course of this film I thought about the suffering I have seen in my loved ones who had been ravaged by cancer. With a strong spirit trapped inside a "barrel" , the pain hardly muted by morphine. I know each and everyone of them would have chosen death by dignity over losing themselves piece by piece to their illnesses. And as a Seattlelite, I am grateful that I have this option, should it ever come to that.
Thank you
Thank you, Jeff Shannon, for sharing your experience, other readers, for your posts too.
"Frontline" on PBS recently aired "The Sucide Tourist", about assisted suicide in Swizterland, and I HIGHLY recommend it. Here's the link to view the entire program: http://www.pbs.org/wgbh/pages/frontline/suicidetourist/view/?autoplay
My dad died two months ago, 2 yrs. after being diagnosed with colon cancer. He spent his last few weeks in a wonderful hospice, and besides his wife, my three siblings and I were able to spend several days with him a week before he died. Several of his good friends and extended family members visited too, which was wonderful for him.
Hospice care is so much kinder/gentler to someone whose death is imminent, and it's also a positive thing for family members and friends, too. Having worked in a hospital as a young adult, I can't imagine why someone would choose to spend their last days in a hospital, if dying at home isn't a good option and if hospice care is available.
As a final comment, I must say that I was mystified as to the all the uproar about "Obama Care" and "Death Panels" during the 2008 Presidential campaign. Of course, what so many uniformed people thought were the ridiculous, fictional "Death Panels" was a clause written into the plan that would provide (financially) for discussion of end of life wishes with a physician and/or other health care professionals. I kept thinking "and that would be a bad thing because...??"
We ALL need to think about end of life wishes, and discuss that topic with family and health care providers. But unfortunately, John Q. Ignoramus wasn't interested in the facts of the health care plan, and thought it was productive to yell/scream/get wigged out at town hall meetings. Seems to me that this was a giant missed opportunity on a national basis.
I watched this last night. I, too, thought it was beautifully done,
Giving people the right to decide when their terminal illness will end should be a basic right. As one person in the film said, we prevent our dying pets from suffering, and so why shouldn't humans that are dying be given the same mercy? It is, and should be respected as such, a person's right to make decisions about their own body.
Thank you to all who participated in the making of this compelling and gentle film about a deep and crucial subject; one that is usually sensationalized to a point that causes most people to have a negative reaction instead of really giving any serious thought to this issue.
I watched this last week and I must say it broke my heart to see Cody and the other patients go through all that pain. May she and the others rest in peace now. I understood where all those patients were coming from because I have my DEAR BEAUTIFUL MOTHER in hospice care with terminal gastric cancer. Every day is a blessing to have her with us but today was one of the hardest days for her and me because for the first time since her diagnose( in April 14,2010)she had SEVERE PAIN. My sister woke me up saying mom was in a lot of pain and when I went to her room my dear sweet mom was in tears. I felt so helpless,wishing I could trade places with her. I am currently 6 months pregnant and it kills me to know that my best friend wont be there for my first time being a mother. We tried chemo with her but all that did was speed up the process of her getting weaker and weaker. I pray that some day in the near future they do have "Death with Dignity" here in California. People have that right to decide when they can't take any more pain and suffering. Thank you to all of those who made this film. I wish everyone would watch it and try to understand why we NEED this law every where,not just in Oregon.
I watched this last week and I must say it broke my heart to see Cody and the other patients go through all that pain. May she and the others rest in peace now. I understood where all those patients were coming from because I have my DEAR BEAUTIFUL MOTHER in hospice care with terminal gastric cancer. Every day is a blessing to have her with us but today was one of the hardest days for her and me because for the first time since her diagnose( in April 14,2010)she had SEVERE PAIN. My sister woke me up saying mom was in a lot of pain and when I went to her room my dear sweet mom was in tears. I felt so helpless,wishing I could trade places with her. I am currently 6 months pregnant and it kills me to know that my best friend wont be there for my first time being a mother. We tried chemo with her but all that did was speed up the process of her getting weaker and weaker. I pray that some day in the near future they do have "Death with Dignity" here in California. People have that right to decide when they can't take any more pain and suffering. Thank you to all of those who made this film. I wish everyone would watch it and try to understand why we NEED this law every where,not just in Oregon.
"We've barely been introduced, and this time it's personal." I hope you're as proud of that sentence as I am envious, Mr. Shannon.
Nearly everyone who's had this experience recalls an overwhelming sense of peace and acceptance, and ever since that day in 1979, I've had no fear of dying. My N.D.E. is a gift that keeps on giving.
I am glad that your near-death experience was peaceful; I don't think we can find any great spiritual truths in it. I was acquainted with at least one person who suffered from a near-death experience of going to Hell. He was in a coma and coded, then revived in terror. (He was baptized soon afterwards, and died peacefully a couple of months later.) Since then, I've noticed that NDEs resembling a Dante's Inferno / traditional Christian Hell are a dirty little secret of spirituality: they make up a small but non-zero size of the set, and almost no one likes to talk about them.
Moreover, other NDEs are all over the board. Christians have vaguely "New Age" experiences. Non-Christians see Christ. Details vary widely among people, even controlling for background and religious beliefs. There is little rational information we can collect from them, IMHO.
I am a Bible-literalist Christian, so I take the concept of the afterlife and the potential for NDEs as granted. However, even Mohammed saw an angel; just because we see an NDE doesn't mean we saw what we'll see at the real death experience.
This is a beautifully written and argued piece, as beautiful in its own way as the film itself. Moreover, there truly is no conflict between Oregon-type death with dignity laws and full rights and personal safety for the disabled. I and every other DWD advocate I know whould just as passionately defend the disabled as we passionately pursue the legal choice of aid in dying for suffering patients who wish it. In fact, my new novel Whate You Wish Forexamines all these issues in a contemporary California context, where, like Illinois, we don't yet have sensible laws either,
Terrific article. Thank you for taking the time to develop the review with background from your life. You are imminently qualified to provide perspective. I have an incurable cancer and a son with a SCI, so it resonates. I also live in Oregon. I am eager to see the documentary.
A positively monstrous blog entry.
Medical science exists to heal, not kill.
I cannot imagine, cannot fathom the cruelty of telling one's own father it's a "good time to go."
There is no pain, no suffering that warrants death.
The cure for the ailment could come up tomorrow.
I personally believe that assisted suicide will lead only to demanded-death. "Well, you're sick - and medical science might help you, but think of the economic cost! Think of future generations who need your resources! Think of my Porsche!"
There will never, ever be a good reason to die. Ever.
Shannon: Sargai, can I safely assume that you haven't seen the film yet? I'd be most interested in hearing your opinion *after* you've seen the film. As someone says in the film, we treat our pets more humanely than we treat ourselves. Human pain and suffering does not wait for a miraculous overnight cure. Prolonging it unnecessarily, when all other options have been exhausted, is arguably cruel and inhumane. You've interpreted my writing according to your own rigid opinion, and not in response to what was actually written and expressed.
My husband and I recently watched the film and we were deeply moved by it. We have sat by and watched numerous family members die from cancer. He can still remember the sounds of his mother's cry from pain and suffering more than thirty-five years ago, he was a little boy at the time. We both agree the film was beautifully done. For those that have seen the pain and suffering first hand I believe there is more support and acceptance, others that have not will have more of a closed mind.
To me it seems the question is choice. Many are taking this topic to an ethical level. It really isn't as much about ethics, religion, medicine as it is about freedom of choice. Most who are against the option seem to be living in a fantasy that heathcare and the government have their best interest in mind. I work in the hospice field and see up close and personal just how painful death can be. There are also instances where life and bravery in illness, can be just as painful. Some in the healthcare profession refuse honesty with their patients, and refuse to admit defeat against disease. I will get off of my soapbox now and give kudos on the documentary. It was profound and moving. I will say that it bothers me greatly that we live under a government that guilts the population into being againt humanity and dignity in death.
Jeff, Thank you so much for writing this piece. I loved the movie for so many reasons. While I too sat at the bedside of my dying parent, I took away a very peaceful and transitional experience. In watching the movie, I felt that the family of Cody were denied that transition. The process by where you know in your heart that it was time...
Cody's family will in my opinion just know that it was their Mother's "choice" of time to go. While I concede that Cody had pain and was in notable discomfort, it was also pointed out that she was not compliant with her medication regimen for comfort. I fear that with the choice to end your life with the stroke of a pen, the "thought" of "discomfort" supersedes the "natural" process that comes in "every" death. While I do understand her choice, I felt it a selfish one. She had TIME to spend with her family...she could still speak, ambulate, participate...She denied herself and her family her presence...for whatever time she had left. Seems like something was lacking there. I so wished that the agency that provided her with the "legal" information also included a "Hospice" type of counselor that could speak with her regarding her "quality of life" questions and "dying process" questions...I really felt a lack of information for her and her family.
Thanks again for the blog...I wish you peace and comfort in your continuing journey. Be well.
I just watched this film yesterday. It was POWERFUL! It was beautifully done and, I am grateful to the families that allowed us to experience both life and death with them.
Thank you, thank you, thank you for such a heartfelt and articulate piece of writing. I apologize now for this lengthy "comment", but I have a lot to share!
I watched the original airing of How to Die in Oregon on HBO and my husband and I were moved beyond belief. As the film came to a close, we sat silent as we both had tears streaming down our faces. Once the credits began to roll we looked at each other and almost simultaneously stated, "That is how I want to go" if either of us were ever faced with a terminal illness.
As caretakers to my Grandmother who passed in 2009, my family and I struggled to deal with her decision to stop eating/drinking in order to end her life as quickly as possible to avoid the continued strokes that plagued her brain and body. It was hard for us to accept that her only option to a speedy send-off from this world was to starve to death or for us to provide her with a cocktail of heart-stopping medication (which we all were too scared to do considering the possible legal ramifications). We constantly asked if she wanted food or drink to which she always said no (aside from the Root Beer Float she mumbled she wanted, her favorite, and I am so happy her last taste on Earth was of something that reminded her of being a child in the soda shop). We provided the most comforting atmosphere we possibly could for her, but it was more for us because it wasn't what she truly desired. I made CD's of her favorite Lawrence Welk and Patsy Cline songs and the "Baby Elephant Walk", which always got her toes tapping. We enjoyed our time with her in the end by singing and dancing, laughing and crying, and talking through our emotions with each other to the best of our ability. I had many conversations with her when she was coherent and when she could no longer respond. I would tell her how much she meant to me, how much I would miss her, but that I knew that it was her time and we would all be ok. Every night I made sure to tell her just how much I appreciated her and loved her. Some family members handled Grandma's requests better than others and, at times, I would walk in to find my aunt attempting to force feed grandma which caused her a very heavy amount of stress and frustration, which we could see in her elevated blood pressure or heavier-than-normal breathing.
The strokes began in mid-2008 and slowly took away her dignity day-by-day as we began to care for her in the most intimate ways from changing her diapers and inserting suppositories, to providing lubrication to her dry and scabbed tongue and mouth every hour, and always feeling a sense of fear that we were in some way hurting her as she grunted and groaned each time we had to turn her to avoid bed sores. Many people are unaware of what happens to the body as it slowly breaks down and prepares for death. The body and skin become so pliable that to simply lay her arm across her abdomen for a few hours resulted in sores on both her arm and hip and "molding", an indentation, left from the dead weight of the extremity. I was the one who left her arm there, forgetting what would happen, and I still have nightmares about whether I hurt her even more. In that time, we watched as a blockage reduced and eventually stopped blood flow to her left foot which became black and dead in a very short matter of time and as her tongue began to turn black and flake apart. All she could do, in the last couple of weeks, was stare blankly and motionless at the ceilling, almost looking as if she were pleading with God to take her away. Of course, I have no way of knowing if that were the case, but knowing her it wasn't such a far-fetched thought. We had to wonder to ourselves, "Is the morphine enough? Is she suffering?" My Grandmother was a strong, open-minded 89 year old woman who lived her life to the fullest and cared for her 12 children and many, many grand, great, and great-great grandchildren in such a way that I believe I will never experience again in this lifetime and feel warrants her the title of Saint Glendora. Her wish was to go peacefully, in her sleep; however, she was not afforded this option here in Indiana and had to wait one agonizing month from the time she entered into home hospice care until she finally passed on April Fools Day (typical Grandma!) 2009. It never settled with her that her sons had to clean her and change her diapers; she felt as if she lost a large part of herself and her pride in losing the ability to care for herself and she constantly wondered what the point was in being forced to go through such an ordeal at nearly 90 years of age. I know if she had her choice she would have chosen to die with dignity as she had many, many times told us over the course of caring for her that she was, indeed, "ready" to go. I was lucky to be there the morning she passes and that day was the first day I felt relief. This relief was in no way for myself, because I still had emotions to deal with that I had held at bay while caring for her. The relief was knowing her pain was over and she was truly peaceful again.
That being said, I respect and appreciate both sides of the coin in this debate, but I ask those who believe this is an "easy way out" or simply a choice based off the financials of family members to take the time to watch this film. I would have gone broke in order to care for my Grandma, or any family member, if the wish was to go out fighting tooth and nail. I am not asking anyone to change their mind, but I do ask those against the idea of death with dignity to step back and further contemplate the reality of the situation. I was blessed to be given the chance to spend so much time with my loved one, to talk things out, and to share in such an intimate experience. Not everyone has that chance given the unknown nature of many of the terminal illnesses we face. To be able to have the right to say I tried everything I could and I want to have a say-so in how my life ends and to plan for it is not only humane, but would also allow me to lift many burdens from my husband and/or son if ever faced with this dilemma. I do not want my son to go through the emotional turmoil of long-term care for me; it will be hard enough to lose his mother as it is. I do not want the money I have worked so hard to save to provide a comfortable living for my son and his children to be thrown away because I have no other choice than to pay for care, pain meds, and supplies to keep me comfortable through a long dying process. I do not want to have to lay there, motionless, as my family is forced to change my diapers, keep a medication schedule, disrupt their personal and family lives, or watch my body fail me over a long period of time. These are my feelings and I do not intend to push them on anyone else. I believe we should have the right to choose what happens to ourselves when, in all reality, we can make a very educated decision on the reality of our long-term abilities and possibilities of recovery. It is my personal feeling that no one, and I mean NO ONE, can truly understand the importance of this option until they are intimately involved in their own, or that of a close friend of family member’s, terminal illness and subsequent death. You cannot pass judgment on a scenario you have never experienced and to do so is both irresponsible and completely based off opinion and not experience. It sure is easy to believe one way while you walk around never having experienced something so tragic.
As one person stated, the medication(s) to cure an illness could come out tomorrow; however, if you are aware of the process of FDA approval, the medications that are created in a pharmaceutical lab today are pushed through rigorous testing, re-resting, clinical trials, and then face government scrutiny and re-design for months, if not years, in advance of their final approval for human consumption. If I am given six months or even a year to live, doctors and scientists will know what is in the works for the illness I have and whether it will ever be made available to me in the time I am still alive, FDA approved or not. No medication is created one day and handed out to waiting patients the next, the system just doesn't work that way, unless you are lucky(?) enough to be a part of a clinical trial. Additionally, we jump so quickly to put criminals to death only to find out, in some instances, that posthumously they were proven innocent by DNA testing, so for those arguing that we would be "playing God" by ending our lives with dignity, how is this any different than playing God in deciding who lives and dies based off the crimes they commit, guilty or not, or, as the film indicates, whether our sick/injured pets are euthanized out of compassion for their suffering. Life is life, no matter which way you cut it. Criminals, animals, and everyday human beings are all living things and I find it odd that we choose to force death on some while we boycott the choice of death for others.
In the end, I think the main point of argument in this debate is that no one, myself included, has a right to tell someone how they should live or die. Passing a law of this type will not FORCE anyone to choose death with dignity; it merely provides the option for those who feel it suits them. Just as human beings vary greatly in what makes them so special and unique, it is my opinion that the options of how to handle the end of life should be just as unique and varying.
This was for you Grandma. I love you and I miss you every single day, but I am so very thankful that your pain and suffering no longer defines your existence.
I have watched this documentary at least 3 times now, and I believe this is the most gracicous way to give a person with an un-gracious death diagnosis a choice. Thank GOD SOMEONE thought of how death ususally doesen't give us a choice. I myself am in the medical feild and have watched many non-related patients I trueley cared about suffer horribly as they whithered away before my eyes without a choice. I can only pray that this law spreads throughout the world so we can all have a choice. In hindsight, they better, or Oregon is gonna be over poppulated even if it is only temporary. I know I'll be the first one on a plane should anyone ever give me such a dx. Guardian Angels come in unexpected forms, and I do believe this is one.
Sargal, to say "The cure for the ailment could come up tomorrow." is incredibly naive.
Having just watched my mother pass away last week, I can tell you that at a certain point the body just shuts down. No miracle cure would have helped. Our bodies aren't meant to last forever.
As for you comment regarding telling one's own father it's a "good time to go," it's far from cruel. My mother knew the end was near. She told me she was not worried about death because there was nothing she could do.
She met and talked with everyone. It was no coincidence that she hung on until the day after my sister's birthday.
She knew it was time to go. And if I or my sisters had said "it was a good time to go", she would have agreed and in her own words "just got on with it."
Excellent article!
Sean Thibodeau at SusPack takes on the those who view death with dignity as somehow less noble.
http://suspiciouspackaging.blogspot.com/2011/06/is-it-honorable-to-use-assisted-suicide.html
Check it out as well.
A beautiful review of a beautiful documentary. I want to make my point very simple. There is nothing that reflects the principle of democracy (self-determination) more than a person's right to choose the time of their death when faced with a chronic medical condition. One can fight over the semantics of what to call this process (death with dignity, assisted suicide, etc), but, I see this debate as a waste of time and energy.
What this is really about is choice and if people truly stand behind the ideals of democracy, then you have to support the right of choice. Isn't it wonderful knowing that when your time comes, you can select the process that is right for you....and that may be waiting for your body to shut down on its own...but I think its a relief to many that you can also choose another way.
I am scared of dying...but I think it scares me even more to know that there are people out there who want to ensure I have no control over how I die...I want to know why people who valorize democracy would fight against my right to choose how I die. I just don't understand.
Shannon: Lori, fear of dying is natural, but my near-death experience took all that fear away. You needn't fear what is natural for all of us. If all of life is an adventure, and we can't say what comes afterwards, then it makes perfect sense to think of a potential aferlife as something to be excited and even curious about. I feel quite intrigued about the afterlife. When my time comes, I'll be filled with interest and anticipation. Don't you think that perspective is healthier than being afriad? It makes *this* life more interesting, because whatever comes next is just another thing to look forward to, like an upcoming vacation!
Jeff- As your trusted old friend of 48 years or so (I'm told we were bathed together as infants in the Edmonds house- I think it was your house), I must say this was maybe my favorite piece of yours. Although painful at moments to read (so many tough memories like when my mom told me of your accident- I'll never forget that day), just so insightful and thought provoking. Wow, what a journey it's been. And I can't tell you how proud of you I am... for keeping your sanity more than anything. But also for all you've accomplished, all your passion, all your opinions many of which were quite different than mine, but also for just hanging in there and being a survivor, when you could've just quit. Oh, and happy 50th on July 15!!!!!! You'll be hearing from me. Warmly, faithfully, SG
I am looking forward to this film. I think people should be able to end their lives and know people who have and respect them for it. BUT I fear the response heralded by the letter that denies care and informs the patient that suicide is an option.
When courts decided people couldn't be institutionalized with mental illness against their will -- our penny pinching politicians decided to simply abolish most institutions without providing community care. People are free to die schizophrenic on the streets -- or as in Texas we can execute them after denying them care they begged for.
When suicide is legal then how easy it will be to deny medical care and leave people to that option.
Superb writing Jeff, I thoroughly enjoyed your article. I was sympathetic at first until I read this:
...who feel that death-with-dignity legislation could potentially lead to the rise of eugenics and the further devaluing and prematurely-encouraged death of the sick, disabled, or anyone else perceived as a burden to society
Eugenics was unfortunately dreamed, studied and almost applied in a not so distant past nor was it bound to Nazi Germany (read the Racial Integrity Act of 1924). Speaking of which they didn't stop at Jews, Gypsies and others, Action T4 which killed nearly 200k people between 1939-45 targeted the mentally and physically challenged.
Since this is all still fresh I believe that humanity as a whole is not yet ready to dabble with this issue let alone legislate it. Indeed, it would open a door too large and the possibilities coming through it are too advanced for today's society to full think it through.
On a personal level I believe that medical science is deeply flawed and needs to be completely rethink. How many people were given "6 month to live" but went on well beyond that period? Most illness are rooted in stress, bad diet and unhealthy habits. Case in point, my father in law's ex girlfriend was a woman with such an advance stage of diabetes that she had to clean her blood 2 times a day (sorry forgot the name of that procedure), she went from that to no cleansing at all in the span of 2 years.
How? Well she completely turned her life about, eliminated all source of stress, started to really eat right, adopted life changing philosophies and, in her case, dove head first into Eastern practices such as yoga to help her find her balance. In other words she was pretty much cured. Needless to say the doctors were baffled and could not offer an explanation even though it was sitting right there in front of them.
Seeing how advanced her diabetes was I am sure that her doctor must've given her a limited life span. What would have happened if she had lived in Oregon and went the assisted suicide way instead of actually curing herself?
There is also Dr. Hamer who theorized, with something as simple as statistics, that most forms of cancer and other major illness are simply rooted in a particular form of psychological conflict, once the conflict is resolved the cancer simply goes into remission. That's what happened to him, my mother, my ex girlfriend etc. My mother had cancer in her left breast, according to the Hamer theory, the left breast has to do with a nesting (children) conflict. At the time of her diagnosis I was a source of stress because I wasn't doing anything with my life but there was also my sister (who is mentally challenged) and there was a custody issue that wasn't resolved.
I put my life together and the custody issue was resolved and all of the sudden she goes into remission....As for my ex she had pre-cancerous cells on her uterus. The Hamer theory states that pre-cancerous cells on a woman's uterus is link to a sexual conflict, namely being sexually dissatisfied. At the time she was still married and they were on a once every six month cycle. She took a lover and her pre-cancerous cells were gone within six months.
This is not magic or wishful thinking. Dr. Hamer simply did thousands of interviews with sick patients and found out that people who suffers from disease X are people who have Y as a psychological conflict. It is statistics at it's best because he never found any exception.
I am not here to sell on Hamer's theory or yoga lessons, it's just that there is a whole lot explanations other than the fatalist version we hear from doctors. Once we really understand how a disease work (and not simply treat it) it's roots and causes, what the human brain is capable of and our inner strengths we will most likely approach the subject at hand from a radically different perspective thus this is why I believe that we are simply not ready for this type of discussion yet.
In the mean time some could greatly benefit from a philosophy stand point on death. Yale university offer a free course that can viewed online here
http://oyc.yale.edu/philosophy
It certainly changed how I see death and I hope it will do the same for others.
Phil
Shannon: Fascinating, Phil. You make interesting points about tenacity and problem-solving as a solution to physical ailments. These measures are all worthy and I think we can solve a lot of physical problems by addresing psychological conflicts. However, it's also true that many, many cases are obviously terminal, and those are the kind of people who are featured in this film. Trust me, when someone is getting closer to death it's very obvious that there are no more viable optioins for survival. That's when the issues addressd in this film become vitally important in tems of how to deal with the inevitable.
Thank you for such a beautiful peice of writing.
Your personal experience lent great weight.