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I Wouldn’t Want To Live Like That! Meh, On Second Thought…

“Misery can only be removed from the world by painless extermination of the miserable.”
-Gerhard Hoffman, Nazi propagandist in defense of direct medical killing of all those possessing serious medical disorders

Those first few years of having Systemic Lupus Erythematosus were pretty challenging. Before that I was just “sickly”, but knowing that it was a lot more serious than that shifted my weltanschauung entirely. I still didn’t understand how fortunate I was. Though it was the worst form of lupus, I didn’t experience any of the organ failures that are so common among people with SLE. It was bad enough for me to have significant health difficulties but none of them reached the life-threatening level. So, issues like end-of-life care and custody of my daughter weren’t much more than abstractions that most people my age are happy to put off until we’re much older.

Then along came the cancer and all of that changed. From the moment I was diagnosed, I had all of these decisions that needed to be made because the situation was life-threatening even before I knew it was there. Because my cancer is rather rare, the doctors had to consult with other physicians around the United States in order to see what could be done to give me the best achievable outcome. I would need radiation therapy right away, followed by surgery as soon as the team of doctors could be organized to do it. Even then, the likelihood of me surviving the surgery was not very good.

How do you deal with news like that? At the local cancer support center, we have a special support group for people who are terminally-ill. In those meetings we’ve talked about how each of us reacted and from those conversations it seems that people basically, deal with it like everything else. If you’re a person who is prone to go out and toss back a few stiff drinks or go to the gym and smack a punching bag around, then I suppose that’s what you’ll probably do. I don’t know if I’d say that there’s any one way that a person should react even though I think that some options are definitely better than others. You just do what you need to do to cope while your brain has time to process the next few actions that will need to take place.

I tried to deal with everything at once. I started trying to figure out who was going to have custody of my daughter once I died and whether or not I wanted a casket burial or a nice cremation. I tried to sit down and write my final letters to my family members so that they would know how much I loved them and how I wanted them to remember me. But guess what? I couldn’t do it. Every time I tried to accomplish these really huge tasks, I just couldn’t bring myself to do it. I wasn’t ready to deal with my own mortality.

It’s a subject that I think is difficult for a lot of people in this society. We have a real aversion to dealing with death. I don’t know how it got this way; It certainly isn’t like this in every culture. I was reading a post by BrownFemiPower (the bestest chican@ blogger in the world) a while back ago and she mentioned how she and her son were planting seeds in the garden. They talked about how what’s dead doesn’t stay dead and how all things that were once alive play a part in the development of all life that exists now. Why couldn’t I have been taught that as a child? Instead, I got stuck going to creepy funeral homes where they find the ugliest clothes in the world to put on the corpse and then couple it with a face full of make-up that looks like it was done by Barnum & Bailey. Does it have to be like that? It’s no wonder so many people have a “thing” against going to funerals.

Anyway, even though I tried to get it together, when the day for my surgery rolled around, I still hadn’t worked out all of those issues that I knew needed to be taken care of but I was out of time. Fortunately, I did survive the surgery and my child wasn’t left without a mom before I’d even had the chance to finish teaching her how to comb her own hair. I’m happy about that. I can’t even begin to express how happy and grateful I am about that. There are plenty of people who have experienced very poor outcomes even though the surgeries that they had are considered fairly routine.

So, now that the surgery was over and I had at least a little while longer to make a will, figure out how to make sure that my daughter would remain in the custody of my partner after I died and start making all my wishes known to my extended family. That last task has turned out to be a lot more difficult than I thought it would be. In fact, it’s proven to be even harder than it was for me to get through those initial moments after my diagnosis.

During the Terri Schiavo controversy, my partner and I watched as this woman was made into the poster child for several different political groups. It angered me to no end. What I felt was a personal decision was turned into a public fiasco complete with religious wackos and crocodile-teared politicians claiming to care about someone they couldn’t even be bothered to go and see for themselves. I made sure to tell my partner that I wouldn’t want to be kept alive in that state.

As a biology major in college, I had taken a medical ethics course where we discussed cases similar to Schiavo’s. Persistent Vegetative State was one of those issues that almost everyone agreed about. Though there were some who generally objected to the concept of euthanasia, when it came to people in PVS, not many were willing to say that it shouldn’t be allowed. After all, who would want to live like that, right? Not many can say that they would prefer a life where they are completely reliant on others to care for their most basic needs.

When the professor described cases where the person was constantly plagued with bedsores and their limbs and digits had curled up so tight as to make it impossible for them to lie out straight on a bed, we were all mortified. We were taught that with PVS it wasn’t a case where the person had any cognitive abilities. It was simply a situation where the brain had died but modern medicine had found a way to keep the other organs activated. Now, while I am rather fond of my lungs and my heart, I was not inclined to think that having a few functioning organs was enough to make someone alive. I mean, you need intact brains to be alive, right? At least, that’s what I thought. Well, it happens that the situation with PVS is a lot more complicated than what was taught in my professor’s class. If you find that hard to wrap your brains around (no pun intended), then tell me what you think after reading about Ahad Israfil.

None of our textbooks mentioned the idea of disability prejudice. Looking back on it, I have to wonder why that is. It’s not as if people with disabilities don’t talk about it. Maybe the problem is just like all other types of prejudice–there’s a certain class of people who can afford to ignore its impact on others. What does it mean that the only philosophers we read about were men (e.g. Kant, Singer, Hippocrates) and the majority of the women we mentioned were the patients who were having these medical decisions made for them by others (e.g. Nancy Cruzan, Karen Quinlan)? What does it mean that none of the philosophers were people of color or people with disabilities?

This course was required for all students in the biological sciences. We were the people who would go on to be doctors and nurses and physical therapists one day. Yet, it was being taught by social sciences professor. Perhaps if the class had been led by, say, a person with a background in neuroscience, we’d have come away from it with quite different opinions.

Since I took that class, and now that the hysteria behind the Schiavo case has died down, I’ve been re-thinking some of my old views. I’ve even gone back and taken a second look at those classic case studies. The case of Nancy Ann Quinlan is especially troubling. Even after being disconnected from a ventilator, Quinlan did not die. Instead she surprised everyone by breathing on her own. In fact, she lived for another nine years after being disconnected from a ventilator with a feeding tube being the only assistive device she needed.

For the past three months, I’ve been having major health problems. I can’t eat. Well, I can put food down my mouth but my gastro-intestinal tract is so messed up that I simply can’t keep much down or keep it in long enough to benefit from it as much as I should. I’ve lost over thirty pounds from this latest episode with my health. Things have gotten so bad that, a few weeks ago, I had to go and get hooked up to an IV (intravenous tube) to receive fluids via my arm in order to revive me a bit.

But what if I wasn’t given fluids? Well, I’d probably be dead already. Does that count as life support? Is keeping someone like me alive by using IVs constitute the use of extraordinary measures? Most people would probably say no. But what if I also needed a catheter? It wouldn’t be the first time I had one. Thanks to multiple surgeries on my spine (in order to cut away at my tumor), my ability to vacuate my bladder is not always reliable. But most of the time it works reasonably well. Does the need for a catheter and an IV mean that my life is not worth living?

A couple of hours after my second surgery, several of my family members came into the intensive care unit to visit me. They said I didn’t really respond to them though. After a few of my siblings and in-laws came through and made sure I wasn’t too awful-looking, they let my grand-mere come in and see me. It was her voice that woke me up from the fog. Even though I was doped up on morphine, I could hear her talking to me and I could feel her touching my arm. I couldn’t do anything other than look at her though.

It wasn’t until a while later that I was conscious enough to make any deliberate movements with my limbs. I couldn’t talk. My brain was too befuddled to do that, but I was able to give air kisses in response to seeing them. It was all I could do to express how happy I was to see them. It was a bit frustrating because I am usually very vocal but I couldn’t even figure out how to say a single word.

Thankfully, that was only temporary. What if I had stayed in that state for a while longer, like say 19 years? Lest you begin to think that Grzebski is the only one this ever happened with, here’s another case of a person in a coma for 19 years only to regain their ability to communicate with the world. This sort of thing doesn’t happen all of the time but occurs often enough for me to think that maybe we shouldn’t be so quick to pull the plug on people just because the individual isn’t able to prove to us that they are conscious of their surroundings.

When people like Jan Grzebski suddenly start talking after being silent for nearly 2o years and they are able to prove that they were aware of their surroundings the entire time, shouldn’t we reconsider the idea that we are putting people out of their misery by withdrawing basic care like food and water? If living with a feeding tube and a catheter was all it took in order for me to live long enough for my daughter to graduate from high school, go off to college, or welcome her first child into the world, I’d consider myself fortunate.

Sure, if someone who knows all of the facts decides that they would still prefer for doctors not to ever attach them to any sort of “life support”, then I think that should be respected. We all have a right to bodily autonomy. At the same time, there are plenty of cases where the person has not stated that they would prefer to die. In fact, there are even cases where the person has expressly stated, time and time again, that they do not want their treatment to be withdrawn. The case of Andrea Clark should scare every single individual who has ever even stubbed their toe in the state of Texas. Should we really be in the business of deciding who’s too miserable to enjoy or even appreciate the life they have?

For interesting additional information you might want to check out these sources:

Complaints and Disorders: The Sexual Politics of Sickness
by Barbara Ehrenreich and Deirdre English

Classic Cases In Medical Ethics: Accounts of Cases That Have Shaped Medical Ethics, with Philosophical, Legal, and Historical Backgrounds
Gregory Pence

Video footage of Ahad Israfil before and after reconstructive surgery

The Boy With Half a Brain

Advocacy Groups
Not Dead Yet

Compassion & Choices
formerly known as The Hemlock Society

Disability Rights Education & Defense Fund

Cross-posted at My Private Casbah

15 thoughts on I Wouldn’t Want To Live Like That! Meh, On Second Thought…

  1. Bint, it’s wonderful to see you posting here at Feministe and a big thank you to Jill for extending invitations to a variety of bloggers to guest post this summer.

    I have so many contradictory thoughts on this, it’s so complicated. No matter how much we want to ignore the fact, there are limited resources and we as a country have to make decisions on how those resources will be distributed. At the same time it’s unfair that the decisions on who is worthy and who is not are determined by who is wealthy, has great insurance, or has family members willing to devastate their finances in order to live; and the rest are SOL.

    I’m especially horrified by the stories of people who are conscious and want treatment continued but the hospital overrides their decision and decides for them that their life isn’t worth living. That is mind boggling and could be any one of us, after reading about Tirhas Habtegiris, who had terminal cancer. All she wanted was for them to keep her alive to see her mother before she died, but she was uninsured and the hospital decided it was too expensive to keep her alive for a few more days and pullled the plug. She is already dying, who are they to take away the days she has left to say goodbye to loved ones and get her affairs in order?

    Some of this would be easier for me to personally understand if it was a matter of—we can keep this one guy alive in a coma for 20 years with no guarantee at the end he will wake or quietly pass away, or we could end his life and give thousands of women yearly mammograms during that time and early treatment for those who have cancer saving a hundred lives, or pay for treatment of some those with diabetes, or pay for dialysis/kidney transplants for X amount of patients with kidney failure, or give so many children yearly physicals and dental check-ups, etc. That would be the conversation we would be having if we had socialized medicine in this country. Somehow it’s harder to be understanding when the real issue is—we could end his life and the insurance company and hospital could pocket loads more profits!

  2. Thanks for an extremely thoughtful post on an extremely complicated topic. I appreciate hearing your thoughts as someone who is contemplating these very issues on a deeply personal level.

    We usually think of these things in the abstract, and when it comes time to really have to make the decisions, things don’t seem quite so black and white, do they.

    I am particularly struck by your point about the male dogma being used to make decisions about the lives of women. The white male dogma, of course. This is something I rail about every chance I get: Where are the voices of the majority? (Non white, non male)

  3. These are such huge and terrifying questions, precisely because they involve trying to anticipate what you’ll want if and when you’re in a state you can’t currently imagine, in which you can no longer make those preferences known. It’s so scary to think, on the one hand, of deciding you wouldn’t want life support and then changing your mind but being unable to stop people from ending it; or on the other, of insisting that you would want all extraordinary measures, and then having your life drag on against your will, fully imprisoned in a body over which you have no control and no way of communicating. I don’t pretend to have any answers, and all I can do is hope that I never have to confront those choices.

  4. I’ve always thought that I’d prefer death by euthanasia to having my feeding tube withdrawn. Why is one ok and not the other? Why is it more ethical to die of thirst and hunger than to go peaceably to sleep?

    On the other hand, putting the power to keep you alive or not into the hands of others is simply terrifying. And there doesn’t seem to be a foolproof way to make the decision free of prejudice and financial considerations, which in an ideal world, it would be.

  5. I’ve always thought that I’d prefer death by euthanasia to having my feeding tube withdrawn. Why is one ok and not the other? Why is it more ethical to die of thirst and hunger than to go peaceably to sleep?

    On the other hand, putting the power to keep you alive or not into the hands of others is simply terrifying. And there doesn’t seem to be a foolproof way to make the decision free of prejudice and financial considerations, which in an ideal world, it would be.

  6. Bint, very thorough and thoughtful post! One of the best I have ever read on the subject.

    Does anyone remember the case of Elizabeth Bouvia? She was the Schiavo of her day, except she was wide awake and advocating for her own death. And it was during this time I personally re-thought all of these issues.

    At first, I was all rah-rah, let her have the right to die, yada yada, until I read the circumstances of her life, her miscarriages, her depression, etc… then I got furious no one had mentioned any of this stuff in the omnipresent news reports. I only knew because I had made it my business to find out.

    When the media finally DID mention these other extenuating circumstances (that would make anyone suicidal), they offered them as further proof that life as a disabled person sucks, rather than (as I saw it) further proof that we all tend to get depressed over the same things. They used the biographical details as a way to highlight difference rather than similarity.

    It pissed me off, but back then, I didn’t have the disability-based language or concepts to convey just what was pissing me off!

    Again, thanks for a great post.

    More on Bouvia here:

  7. I’m a disabled person, too, and I’ve spent a lot of time thinking about where my personal “bright line” is — not that I’d advocate enshrining it in law or even common practice, but for me, I decided it was cognitive impairment. My body’s so unreliable that if something catastrophic were to happen to my brain, and leave me without my intellect (which is about the only thing in my “selfhood” that I really can depend on and cherish), I’d really want to die. It took me a long time to reach that conclusion, and I’m still in the midst of trying to implement it legally. Of course, the fact that I don’t believe in any afterlife makes it possibly harder for me to deal with end-of-life and quality-of-life issues than it might for someone else.

  8. Hey Donna,

    No matter how much we want to ignore the fact, there are limited resources and we as a country have to make decisions on how those resources will be distributed.

    I agree. Healthcare funds are finite and we definitely need to be wise about how we make use of them. Unfortunately, this fact is being misused by some in order to manipulate people in the USA into believing that socialized medicine–I prefer the term “freedom healthcare”–would result in more money coming out of their pockets. I can understand why that is an idea that just freaks out a lot of people who are already struggling to just to keep a roof over their head. In fact, if we did adopt any of the single-payer systems that are already in use around the world, we’d end up paying a lot less and receive more services than many of us do at this time. That’s what makes it so maddening for me too. We’re paying all this crapload of money and we’re getting pisspoor care–if we get care at all.

    The case with Habtegiris breaks my heart and enrages me all at the same time. Even more than dying, I fear dying alone. What kind of inhumane scum would deny someone the ability to see their mother before they die? Arrgh!! I have to just take a break from thinking about this sometimes or else I’ll explode!

  9. Tinfoil hattie

    Where are the voices of the majority? (Non white, non male)

    Well, don’t you see? We’re not a part that matters. How dare you uppity colored, women-folk start worrying your pretty little heads about this sort of thing!!

  10. emjaybee,

    Why is one ok and not the other? Why is it more ethical to die of thirst and hunger than to go peaceably to sleep?

    To be honest, I don’t know why. Although some people suspect that it may have something to do with the fact that the hospitals would get a bigger payment for the former than the latter. Check out this link by Michael Owens on the Ragged Edge site:

    An Enhanced Death Benefit

  11. My birthmom was PVS while I was a child. I was adopted by her sister, and we visited her regularly. The doctors tried to explain that she wasn’t really there, that she’d never come back, but I never understood that. Then, when I was 14, she “woke up”. In other words, the doctors finally realized she was here. I don’t think she ever wasn’t.

    My family’s experience with this made the Schiavo controversy really difficult. Before that, I never thought someone would be killed for being PVS. It’s not braindeath. But what is really hard is talking to average people, average liberals, about her. It seems like everyone I used to agree with on most politics, on the internet or real-life acquaintances, suddenly decided that the only option for her was death, and announcing that everywhere and anywhere was fine, because how could anyone disagree with removing a “braindead” person from life support?

    It made me glad that my birthmom had her aneurysm when she did, instead of 10 or 20 years later. You’d think medical advancements would have allowed her to recover faster and be in better shape now, but instead I think she would’ve been dead by now.

    Thank you so much Bint, for showing this side of the issue. It’s an issue of live and death for many people, and if the rest of us don’t realize the problems with it who knows where it’ll stop.

  12. I wonder why the limited resources argument always comes up when discussing health care but not education or war? We don’t say we should ration education and only let the really intelligent or the really learning disabled go all the way to the 12th grade and kick everyone else out in the 9th grade or some such equivalent. Why do we argue this way about healthcare?

    I have kidney failure. I would not be willing to have anyone put to death who is in a long term coma to pay for me to have a transplant.

    I have been unconscious in an ICU and in and out of consciousness. I wouldn’t want to go through it again, but I certainly wouldn’t want anyone to take away the 11 years I have had since then.

  13. Marle,

    Your experience brought tears to my eyes. Sometimes it takes medicine a long time to catch up to where some people’s “untrained opinions” have already taken them. If your mother wasn’t in there, then she couldn’t have woken up at all.

    I used to consider myself a conservative. I don’t any more but I still don’t use the term liberal to describe myself; I just can’t. Too many liberals have abandoned people with disabilities. I simply can’t understand the inhumanity and audacity of some people who I’d otherwise have such respect for. What’s so hard about this? Nothing about us, without us.

    I am so very glad that your mother had family that didn’t just abandon her in some warehousing facility with nothing to look forward to. Those with PVS who have “woken up” all seem to have at least one thing in common; They were people who had loved ones that remained in their lives despite what the doctors said.

    You were very blessed to be raised by an aunt who was so diligent about making sure you understood that your mother was not dead or worse–I say “worse” because it’s obvious that society thinks the default position is that we should be willing to do whatever we can to die once we become so unacceptably “abnormal” and those of us who would prefer to continue living are simply being selfish @$$holes. Unfortunately, there are people who wouldn’t put a stray dog in a facility unless it’s a no-kill shelter but can not see why people with disabilities are worthy of the same consideration.

    Your contribution to this discussion is invaluable. Thank you for sharing with us about how your own family coped.

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