"I didn’t die?"
July 19, 2013 8:55 AM   Subscribe

A Life-Or-Death Situation. "As a bioethicist, Margaret "Peggy" Pabst Battin fought for the right of people to end their own lives. After her husband’s cycling accident, her field of study turned unbearably personal." Via.
posted by zarq (26 comments total) 10 users marked this as a favorite
A strong response to that article is here. The writer, himself a paraplegic, points out the biases in the article. He writes often about disability rights as civil rights.
posted by leslies at 9:24 AM on July 19, 2013 [8 favorites]

That was an incredibly interesting article, and I appreciate you posting it. My partner and I recently made health-care directives and living wills, and I found it very painful to try to think through what might happen in this kind of scenario. Reading the article makes me realize how hard it is to imagine what it will actually be like, and so it's very hard to plan for this.

I did find it distracting that the author used such harsh and judgemental phrases about Hopkins' body:

no mind can fly free of a useless body’s incessant neediness
inert sack of a body
progressively more useless bodies

While Hopkins is clearly disabled, it's just physiologically untrue to say that his body is "inert" because he doesn't have control of all his muscles. The bodies of disabled people are not "useless", framing it that way is straight-up bigotry.
posted by medusa at 9:30 AM on July 19, 2013 [3 favorites]

leslies, sorry, but anyone who knows something is actually messy and raw is too honest to be wrong.
posted by michaelh at 9:35 AM on July 19, 2013

On non-preview I see that the article in leslies' link articulates what I was uncomfortable with in a much better way:

I am truly stunned by the descriptions of Hopkins body. He is a plugged in mannequin whose useless body has incessant needs. A dignified man has been reduced to wearing polyester pants and a diaper. When I read passages such as this in the supposedly venerable New York Times I wonder first what was the editor thinking and secondly it is no wonder people have such a skewed concept of disability. . . .

The comments that follow Henig's article in the NYT are largely supportive if not effusive in praise. I expected this. Whenever a person with a disability expresses a desire to die the collective response is supportive. People with a disability that express a desire to die are brave. They are heros. Of course you want to die. This is a logical response to disability. Those that want to live are a problem and quickly deemed bitter.

posted by medusa at 9:36 AM on July 19, 2013 [2 favorites]

Thanks for posting that, leslies. I hadn't seen it.

My dad developed Multiple Sclerosis in his 20's, and eventually become disabled. It contributed to his death at a young age. Having lived with someone who dealt with (and raged against) the gradual onset of his disability, loss of control of his own body and ultimately, complete loss of autonomy / independence as an adult, and then having seen how other people address the same problems, I've learned that everyone deals with disability differently, depending on their situation. I wonder how much of the descriptions of Brooke in the article came from the man himself. They sound very familiar. Things my father would have said about his own body and helplessness.

I guess what I'm trying to say is that "Bad Cripple" is pointing out biases as he perceives them. But I'm a little uncomfortable with the idea that the descriptions in the article prove strong anti-disability bias on the writer's part. It doesn't strike me as impossible that she may be reporting things Brooke and Peggy have said without attributing the ideas to them. I could be wrong, though. And it's worth noting that BadCripple has a lot more personal experience addressing negative stereotypes and perceptions of people with disabilities than I do, as a privileged non-disabled person.

That said, BC raised so many extremely valuable points that were ignored or glossed over in the article, such as assisted suicide, the unspoken advantages of health insurance and Peggy's tenured job and other ways they're privileged that most people don't have. They were all mentioned in comments on the main article, but I doubt anyone will bother to read those
posted by zarq at 9:46 AM on July 19, 2013 [3 favorites]

I generally tend to be in favor of decriminalizing something like physician assisted suicide. But the Bad Cripple article raised some pretty strong points as to why such a thing should be very carefully restricted and is a much more nuanced issue then what is generally portrayed. On a more general note it continues to dismay me just how un-nuanced and unkind public discussion and subsequent political actions tends to be. It led directly to this kinda not great ACA legislation passed, which on the outside looks like it should be a good thing, but is looking pretty questionable in parts as time goes by.
posted by edgeways at 9:56 AM on July 19, 2013

Big assumptions about the right to die in this article...equating that living will/DNR request in the case of quadriplegia with, say, being in a vegetative state or having a terminal illness that will be extremely painful and inevitable.

Kind of a leap, if you ask me.
posted by Chuffy at 9:59 AM on July 19, 2013

Zarq - Bad Cripple is a very angry guy but I've been reading him for years and he makes many cogent, important points about disability issues. I cannot argue with his anger given the kind of struggles he details in his blog. Interestingly to me his anger is directed against access, bias and assumptions not about his actual disability. He was seriously ill last year and was encouraged to consider no treatment and choosing to die. He's an active guy with a college aged kid and an active academic career. Made me think hard about my views re assisted suicide.

Having watched several people go through progressive disability over the years I no longer assume what I might do if presented with that kind of disability. I grew up with someone who committed suicide a few years ago when her MS progressed to the point where she would need a ventilator and could no longer swallow. I think safeguards are key - the choice to end one's life can be strongly influenced by access to support, care or concern about pauperizing one's family - and those seem like barbaric reasons to feel the need to opt out. I don't think it should never be available having watched people I love die in suffering.
posted by leslies at 10:01 AM on July 19, 2013 [2 favorites]

zarq, I avoided the comments because hey, comments on the internet, but now I am reading them and some are amazing. This one started some great discussion here in my office. On the one hand, I think people should be able to make their own decisions on quality of life and end-of-life issues, including assisted suicide. On the other hand, it really does say something about society's valuation of the disabled that assisted suicide for the disabled is something to discuss, but suicide for the (physically) abled is off the table and treated as a crisis.

Also, the idea of choosing to die because the alternative is running your family broke... I need to check my wealth privilege, it seems. The idea had never even entered my head.
posted by Sternmeyer at 10:04 AM on July 19, 2013 [1 favorite]

I think the piece improves as it goes on and focuses more on Brooke as well as Peggy, and how the decisions that seem clear-cut when we're not actually faced with making them become more tenuous and complicated - I think the story almost suffers from the association of these issues with Peggy's advocacy for right-to-die cases, rather than looking just at Brooke's stated decisions before and after his accident.

It reminds me a bit of when I was a pro-life teenager, convinced that I would never have an abortion (which lasted exactly as long as my first turned-out-to-be-unfounded pregnancy scare). I sometimes think that able-bodied people make the same mistake when they think of loss-of-mobility or end-of-life issues. They think, "I could never live that way!"
During Peggy’s cross-examination in the Gloria Taylor trial, the Canadian government’s lawyer tried to argue that Brooke’s choice to keep living weakened Peggy’s argument in favor of assisted suicide.
I know this is the gov't lawyer's job, but golly what a jerk move.
posted by muddgirl at 10:04 AM on July 19, 2013 [3 favorites]

Bad Cripple makes good points on his own terms, but he's guilty of projecting anti-disability subtext onto an account of one couple's personal experience.

Disability comes in many varieties, and everyone is differently equipped to want to deal with what those varieties entail. I'm part of an active community of people with Crohn's and ulcerative colitis, and over the years have known people who've discussed or sought suicide in response to not just physical pain and discomfort, but also what are frequently described as indignities or humiliations: total loss of bowel control, inability to eat, routine and unending rounds of major surgeries with long, distressing recovery experiences, and so on. For lack of a better way of putting it, people in these situations can on occasion get into pissing matches--"I can't believe you're moaning about a resection surgery, I have a colostomy and just had another round of Humira and you don't see me whining" and such.

"Battin and Hopkins are lucky--hard to imagine this I know. The man I described above who experiences a SCI injury is screwed. He is doomed to fail despite the fact he enjoys the same civil rights as Hopkins. Who will advocate for him? No one. Maybe a bored social worker will make an effort but the fact is nationwide resources for people with a disability are grossly inadequate."

Battin and Hopkins are lucky? I'm sorry, BC, but they aren't. They are expressly living lives they did not want to lead, and struggling with it. As you're making your points about anti-disability biases, please avoid being so blindly cruel to people who don't meet your standards of suffering. It's a hard sell to assess a stranger's first-person experience from an article.
posted by late afternoon dreaming hotel at 10:13 AM on July 19, 2013 [7 favorites]

My Great Aunt was a feisty, independent woman. After losing her husband to cancer and her sister to dementia she was adamant thereafter that her life would end on her terms, before she was in he state that those closest to her had slipped into before death.

I agreed with her in principle, of course. Who wouldn't? However, when visiting her I began noticing signs that all wasn't right - a past due bill, toilets unflushed, a burner left on. I thought about saying something, but knowing that my words would lead shortly to a polite note and a handful of pills kept me quiet. Ten years on now she's now exactly where she never wanted to be, in an Alzheimer's home, unable to recognize visiting family and friends. Why didn't I say something? I should have said something.
posted by Blue Meanie at 10:18 AM on July 19, 2013 [8 favorites]

The word I would use is "privileged," and BC is right that the issue of class is hardly addressed in the article. I disagree with him on the idea that assisted suicide isn't an answer for anybody, but I agree that it is a much more comfortable topic for many people than the barriers to quality living that we erect for people who don't fit our conception of a hale, able worker.
posted by muddgirl at 10:23 AM on July 19, 2013

Having just gone through the arduous and agonizing hours after terminating life support on my father a few months ago, it is easy to second guess our decision. Reading this story about what would have been a "best possible (miraculous) case scenario" of "recovery" for my dad makes that decision rest a little easier.
posted by The 10th Regiment of Foot at 10:25 AM on July 19, 2013

I read this article yesterday and was left with a deep and unending sense of betrayal.

I've talked about how I feel about assisted suicide on the site before and as I get older and see more and more family members and myself suffer the indignities of bodies that no longer allow them independence, my ideas only get more solid.

I understand that as humans we are seemingly programmed to cling to life at all costs. When our bodies fail, what so often was seen as unlivable becomes the new norm. However, as strongly as I feel you should never imply or suggest that a life lived in a body that is disable is lesser than a life lived in a body that hasn't failed yet; I cannot wrap my head around how Battin has decieved her husband.

The end of the article, where he believes that he would have died and didn't, and she allows him to believe that it was unexpected for him to continue to live? That part made me want to vomit. If my husband or parents so completely disregarded my own desires towards life in such a way, I couldn't bear it. It seems like such an utter and complete betrayal over and over again because she feels that he wants to live. Despite the letter, despite the living will, despite all that, she has chosen time and again to place her wants above his. Because he's disabled and clearly can't rationally think for himself.

To me, the greatest example of love was my step-grandmother and my grandmother letting my grandfather die under his own terms. If they had gone back to the house and found him still alive, they would have continued to care for him. They would have pursued medical measures to extend his life, but they did what Battin seems incapable of doing. They trusted him and allowed him one final act of autonomy to die as he saw fit. I imagine it was terrifying for him and a horrribly unpleasant way to die. I also imagine he might have regretted his decision after he made it, because that's what we do, we cling to life even once it's no longer worth living. But I also think that to do anything other than respect the wish as it's made is disregard an individual's agency. Battin is demonstrating an equally dispicable aspect of prejudice against the disabled, that he is blinded by his suffering and cannot truly determine if his life is worth living. And to me, that is not love, merely possession.
posted by teleri025 at 10:28 AM on July 19, 2013 [5 favorites]

I don't know how to feel about the end of that article, but as someone who's had incredibly incapacitating pneumonia multiple times and once badly overextended myself on a month-long bicycle trip and then spent weeks hobbling around, barely able to walk up stairs, wondering if my knees were permanently destroyed ... I can't begin to imagine what it would be like to be forever trapped in a barely-functioning body, dependent on machines and professional help forever.

I have nothing but respect for anyone who faces that future and embraces the mental and physical abilities they still have, but I don't know that it would be the course I would take. This article seems like it depicted Brooke the way he sees himself, and to call that "anti-disability" seems patronizing and invalidating of his lived experience.

This could have been an article about Brooke finding new meaning and purpose after his injury, and the questions that raised for Peggy's advocacy. Instead Peggy turned into the one not willing to fully respect her husbands desire to end what he seems still to see as a life not worth living much longer.

That is his life and his perspective, and it's deeply offensive to conflate it with bigotry.
posted by crayz at 11:07 AM on July 19, 2013 [2 favorites]

crayz: " This could have been an article about Brooke finding new meaning and purpose after his injury, and the questions that raised for Peggy's advocacy. Instead Peggy turned into the one not willing to fully respect her husbands desire to end what he seems still to see as a life not worth living much longer.

That was one of the reasons I found this article so interesting. Here you have someone (Peggy) who has been a strident, eloquent voice for euthanasia, self-autonomy and people's right to die for several decades. She's written at least 3 or 4 well-received books on the topic most of which are studied at the university graduate level. And now her husband has become disabled and is living a life he attempted to avoid by establishing a living will and DNR before his accident. And she now seems trapped in an impossible, agonizing dilemma. Sometimes, he says he loves life and wants to live. And yet he's also clearly said verbally and in writing that he wants to die. Is her desire to keep him alive overriding what he really wants? It's hard to say. I think she wants to do the right thing by him. He seems conflicted. And tied up in all of that is his depression and the pain he's experienced, and the hallucinations mentioned.

One of the comments on the article offered that the best thing for her to do would be to place his medical and right-to-die decisions in the hands of an objective third party, like a caregiver or a lawyer. Remove herself from the equation, so she can be sure he gets what he wants and she doesn't impose her wishes on him. But in her place, with him expressing conflicting wishes over time, I'd be really nervous about doing that. What if he says he wants to die on a Tuesday and changes his mind on a Thursday?

I don't mean to make him sound flighty. I can't even imagine what he must be going through. But according to the article he's not expressing his wishes consistently, and that must determining the right thing to do for him quite a bit harder.

That is his life and his perspective

It wasn't clear to me that every expressed perspective was his or Peggy's. I think it might be, but I wish the writer had been clearer about that.
posted by zarq at 11:31 AM on July 19, 2013 [3 favorites]

Yeah, it was a complicated, thought-provoking piece. I see some of the same things you see, teleri025; but I'm not so sure that it's perfectly clear that he wants to die and his wife is ingnoring that. Situations like this, there's inevitably a bit of a Rashomon side to them. Who hasn't said something, in a moment of pain or anger or despair, something that they regret, expressed some sentiment or desire they would normally find anathema? If someone had to decide for you, which version of yourself would you have them believe, the one in present extremity or the solid self they have known for years? Especially if this crisis may pass and leave you no worse off than before?

Battia saved him against his wish, and he got to finish Moby Dick, to teach Don Quioxte once more. Did he hate every second of that? Did that give him no pleasure, no purpose?

At the same time, I dunno about the disability right's guy's piece either. I see what he says about the way the piece diminishes the guy's autonomy, depicts his existence as a punishment, an endless round of suffering. But if the guy has to wear a diaper, if he can't eat anymore, if the medicines he's taking to stay alive cloud his brain --- is the reporter supposed to skip all that? To let it go unmentioned, lest these details seem sordid? I can't bring myself to think that either --- the whole heart of this question is what kind of life is worth living, and if we're really going to answer that details matter. The price matters.
posted by Diablevert at 11:33 AM on July 19, 2013 [1 favorite]

It's not clear to me that the article does accurately depict the way Brooke sees himself, and I would be surprised if it did or could.

My father is in sort of the reverse situation - he has a chronic illness that affects his mental processes (it causes fatigue and "brain fog") but leaves him mostly physically able when he has the energy. Like Brooke, he has his "good days" and his "bad days." His self-conception on his bad days seems nearly 180° from his self-conception on his good days. Which is the way he sees himself? Good Day Dad or Bad Day Dad?

But if the guy has to wear a diaper, if he can't eat anymore, if the medicines he's taking to stay alive cloud his brain --- is the reporter supposed to skip all that?

Surely there is a middle ground, where these facts can be expressed neutrally, without implying that his body is basically dead already.
posted by muddgirl at 11:37 AM on July 19, 2013 [1 favorite]

To be fair to her, and not in the sarcastic way, it is Peggy that will have to go on with the agony after his death.
posted by The 10th Regiment of Foot at 11:38 AM on July 19, 2013

I disagree with him on the idea that assisted suicide isn't an answer for anybody

That was a big part of my difficulty accepting his criticism of the article. He's right that things in real life are messy, that assisted suicide is problematic in society for a variety of reasons, that there's a bias against physical disabilities, and there's some iffy language choices in that article. But it seems to be to be the flip side of the same coin to insist that people are not allowed to have their own reactions to their own physical changes. It smells of lionized suffering, though it includes some sense of how dare you find this alteration of your expectations to be something that makes you actually suffer?

To suggest that someone should consider that they are not their body and that a vastly changed life can still be fulfilling and rewarding is laudable. To tell someone that they are not entitled to still eventually come to their own conclusions about the life they wish to live - or not - doesn't jibe with my beliefs. The difference between my position and what seems to be BC's is that I'm not prepared to tell him that he has to live in accordance with my beliefs.
posted by phearlez at 11:53 AM on July 19, 2013 [4 favorites]

Surely there is a middle ground, where these facts can be expressed neutrally, without implying that his body is basically dead already.

A lot of the language medusa highlighted about his "useless" body is clearly heavily freighted, and it flavours the piece. But the specific passage describing what he was wearing --- which the Bad Cripple blogger cited --- seems about as neutral as you can get to me. Likewise a lot of the descriptions of his bedtime routine or the difficulties he has holding a conversation. There are moment when it felt a bit uncomfortable to me, the details she chose to include:

“Basically I dislike being dependent, that’s all,” he said, looking hard into her eyes. He spit some excess saliva into a cup.

But if you omit the spit, isn't that a lie in its own way, too? A burnishment? Part of what he's alluding to in that very passage is the eternal humiliations of having to rely on others to fulfill his most basic bodily needs. Talking to other people means spitting in a cup in front of them from time to time. That's the price, one of the little tolls he has to pay every day.
posted by Diablevert at 12:07 PM on July 19, 2013 [1 favorite]

"I dislike of being dependent" does not mean the same thing as "I am humiliated by my dependency." The second is implied by the reporter, not the subject. In our culture, self-reliance is one of the most important qualities a person can have. The idea that Brooke would be or should be humiliated stems from the idea that it is shameful to be reliant on someone else, but I don't think that's an innate fact of life.
posted by muddgirl at 1:28 PM on July 19, 2013 [1 favorite]

Helping people to die who have autonomously decided that they've had enough ... given irremediable suffering ... is clearly the wisest and most compassionate course of action. It's a lot lessy messy than a shotgun, and spares the feelings of all those who know and love the person.

I'm convinced that one day this will be as self-evident to all as many other long-resisted remedies have become. When society attempts to strip people of their autonomy without compassionate reason, it invites similar attitudes towards the healthy, furthering the cause of oppression and the deliberation of one and all.
posted by Twang at 6:31 PM on July 19, 2013

A similar "living will" issue happened with my dad. Once the measures start being taken, it's hard to stop.
I can see why BC is pissed, but situations and disabilities vary. Brooke can still talk and think and teach, so he can still enjoy some things in life. My dad lost any ability to do anything at all but lie in a bed. What did he have to live for? And we did have to worry about my father's care bankrupting my mom to keep him barely alive in a bed. FUN TIMES. If it wasn't all horrible, it would have been a worse debate- but it still took 2 years of suffering, hospitalization and finally being cut off by insurance to get to where Mom was willing to let him go.
posted by jenfullmoon at 5:52 PM on July 20, 2013

And Brooke's situation isn't entirely bad and he does sound like he changes his mind frequently on whether or not he wants to die. What do you suspect Peggy do in that circumstance? She can't reliably trust that he's made the final decision on this, and he is handicapped enough that he needs the cooperation of someone else in order to choose death. I suspect it all may just wait until he dies a natural death or seriously starts to lose his mind.
posted by jenfullmoon at 5:55 PM on July 20, 2013

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