Saturday, June 23, 2007

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


Doctor David said...

Dear Bint,
What a fascinating discussion! I've been reading your blog for weeks now, and have thoroughly enjoyed it. This post especially hit home for me. Partly because of my own similar experience lying in the cardiac ICU wondering if I was dying and wondering whether I'd see my daughters graduate from high school (they are 9 now). But also partly because I take care of kids with cancer, and have had several enter what appeared to be a PVS... what ensued were very long, very difficult conversations with parents and siblings. Hearing thoughts from someone with first-hand experience at least of contemplating that possibility in a realistic way is a real eye opener, and I'm sure this post will stick with me for a long time, especially the next time I have to talk with a parent about life support for their child. Thank you for such a thoughtful post.

David Loeb, MD, PhD

bint alshamsa said...

Hello Doctor David,

How nice it is to hear that you have been visiting my blog! I hope you'll continue to come. I see that you have started a blog. I look forward to reading about your experiences too. Your voice is as needed on the blogosphere as it is in the hospitals. I have often wondered about those individuals who are able to take on the responsibility of being a healthcare provider for those of us with cancer.

I am so glad that your visit to the ICU is over with. When I saw my daughter at her elementary school promotional exercises, I don't know which was greater--my pride in her or the gratefulness I felt because I was able to share this moment with her. I'm so glad that you are able to continue being their daddy so that you can enjoy such moments too. Besides, your colleagues and patients wouldn't want to lose you either, I'm sure!

Thank you for adding to the discussion of these issues. Feel free to chime in any time.

Tigera Consciente said...

This post made me think about a month ago when I was diagnosed with high risk HPV after a pap smear. I was scared that it would develop (or had already developed) into cervical cancer. I was told I needed to get a colposcopy. As an ethnic studies major, I had read a lot about American Indian, Puerto Rican, and Black women being targeted for forced sterilization during the late 70's and early 80's. After my mom had my little sister in 1982 the doctors told her she needed to get her tubes tied because of her heart condition. Why would doctors tell her to tie her tubes for a heart condition instead of providing treatment for her heart? Perhaps because she's a Dominican woman with a thick accent who already three children? Perhaps because she had not been given the resources to research her own heart condition because it was hard to find information in spanish or society (both here and in DR) had taught her that she was too dumb to influence some of the decisions that doctors make?

I refused to let them pick the clinic for me, being skeptical (for good reasons as you so validated here). I didn't want to go to clinics that targeted poor people of color because those had historically been the target. So I looked for clinics located in white neighborhoods who would still take my "low income reproductive health insurance card". I found one in Berkeley after three weeks of phone calls and research. I also went on a juice fast and vitamin and food diet to boost up my immune system having read that a good immune system could cause your body to fight HPV alone. After the results of my colposcoy I was both elated yet still more skeptical. Had my body fought,after a two week diet shift, something that was really there?

Anonymous said...

Dear Bint,

Thank you for your understanding through personal experience on partial coma. Unfortunately, I never experienced this - or I would have been able to save his life. go to: - and search movie clip using words: organ donation controversy. This beautiful young man would have certainly lived! The parents were told lies and shown a (false ct scan). He did NOT have any strokes. I just knew he was better than what they said. But they KILLED my him for HIS organs. I now know he knew what was going on. Shortly after surgery he was waking up and moving his hands and feet to the sound of his mothers voice - they wanted her to go away and started doping him - The truth is in the medical records and scans! How can they do this to innocent young people looking forward to graduation and college?

bint alshamsa said...


Thank you so much for bringing this to my attention. This is absolutely despicable. It scares the daylights out of me that this sort of thing is allowed to go on. I'm definitely going to look into this "non-beating heart" protocol. I don't know enough about it yet but I'm probably going to write more about it once I do. Thank you so much! Please feel free to visit again and talk about how this issue has affected you. Are you associated with the family this happened to?