Terrie and Bill – My Own Troubled Thoughts

"end of life", medical decisionmaking, Our News & Commentary Blog, Terrie Lincoln, william peace

Before I get into sharing my thoughts on the two previous blog entries, I wanted to share a little of the backstory that went into the inclusion of Terrie Lincoln’s story on the “How We Die” website.

Last month, I was contacted by Hannah Rosenzweig, who is working on soliciting stories for the “How We Die” series. You can read a lot about the content and goals of the team by reading this section of the site.

Hannah’s purpose in contacting us was to look for “end of life” or experiences about people with disabilities facing the “end of life.” I gave her a shorthand version of the complicated nature of the term “end of life,” which I’ve written about before. Like most people who use the term, she hadn’t thought about just how many diverse situations that innocuous term actually covered.

This provided an opening to pitch Terrie Lincoln’s story to Hannah. I gave her a brief outline of Terrie’s story as I knew it. She definitely found it compelling, but wasn’t sure what to do with it. I think she became hooked when I pointed out that if Terrie’s family had caved into the pressure to take her off the ventilator, we would now say that the family had made an “end of life decision.”

The rest was a matter of getting Terrie and Hannah to connect and communicate – which is how the story of how Terrie lived got to be on a site titled “How We Die.”

Every time I think I’m incapable of being shocked, something comes along to prove me wrong. When I read the first draft of Terrie’s account, I was stunned. It wasn’t so much by the specifics – we get stories like this from time to time and they are eerily similar – the grimmest scenario, with the assurance that the injured person wouldn’t want to live like that. If the family resists, the quality of their caring is called into question. It happens – I’ve heard similar stuff too many times to doubt it.

What really threw me about Terrie’s story is that this happened in two different hospitals in two different states. Could it be that I haven’t been cynical enough about how dangerous it is for people with disabilities in the medical system? And of course, William Peace’s account adds to that strange feeling that things are maybe worse than they seem – and have been for a long time.

Personally, I’m still trying to sort all of this out. But I think that I think it’s best and probably accurate to start out with some basic assumptions:

  • These medical people aren’t “evil” or “bad” people, but operating from what they see as kindly, compassionate motives;
  • They honestly believe that a young woman wouldn’t want to live the life of a quadriplegic;
  • They honestly believe that most families would be better off without the “burden” of a family member with a significant disability.

I am going to go out on a limb and even guess that the fact that Terrie’s family operated from strong Christian beliefs may have been discounted by the professionals they dealt with as “irrational” as opposed to their own “objective” evaluations.

The mostly unchallenged and unquestioned belief in the objectivity of medical professionals (especially in terms of how they regard themselves) can be especially dangerous in situations where someone’s life hangs in the balance.

It’s dangerous because there’s nothing especially objective or rational in the belief held by the medical team that pressured Terrie Lincoln’s family that she’d be better off dead. There’s plenty of research that indicates that people with significant disabilities are much happier with their lives than medical professionals seem willing to believe is possible.

The trouble, I think, is that medical professionals are no more moved by research and factual information than the general public. What sticks with them are the worst memories – the memories of people dying after months of rehab/recovery; the worst points of adjustment to the realization of newly-acquired disability; the stressed-out and maybe cash-strapped families.

For hospital folks, there are no experiences with the power to provide balance to those kind of experiences and the emotional impact that comes with them. Discharges of patients are an unfinished story, with no closure, let alone a happy ending.

It becomes understandable (but not condonable) that some would jump to the assumption that it’s just better to get a peaceful, dignified death than to go through medical hell to live a life with a significant disability.

So what do we do about it?

First, we need more people like Terrie and Bill to tell their stories. And name names where we can.

Because if my thoughts are anywhere near accurate, no amount of teaching or education will be effective in changing the attitudes of medical professionals who engage in the types of behavior covered in the two stories.

So what will work? Exposure. Hospitals and medical professionals seem to hate the experience of having outsiders get a glimpse of some of what they do – especially if outsiders don’t like what they’re seeing.

Exposure and the threat of accountability won’t change attitudes, but it could have a powerful and lasting effect on behavior. I’ll settle for a change in behavior – it’s easier to measure. –Stephen Drake

Bad Cripple Shares Scary Thoughts About How Many People with SCI Needlessly Die

"end of life", devaluation, medical decisionmaking, Our News & Commentary Blog, reality check, william peace

First, housekeeping: I’m saving my thoughts, etc. on Terrie’s story until tomorrow. I’ve removed the “part 1” from the title of the blog post with her story since it really doesn’t belong there.

In the meantime, William Peace at BadCripple read Terrie’s story and it caused some scary thoughts and memories to surface:

Excerpt:

I vividly recall late one night asking a rehab nurse why there were no people with a high level SCIs on the ward. She looked at me with an odd expression and replied “think about it”. Naive, I thought and thought and could not think of an answer that made sense. The nurse shook her head and told me to raise my level of injury from T-3 to C-3 and asked me if I really wanted to live that sort of life. After a pause I said not but that was not up to me, people had the right to choose. Such a decision I thought was made by doctor, patient, and family. Again she shook her head. That decision, she told me, was made in the ER and operating rooms by doctors. Patients who would be dependent upon a respirator and unable to independently move died. “They were allowed to die with dignity” she told me.

The instance described in the excerpt is from some 30 years ago. Peace fears – as do I – that stories like Terrie’s (minus the survival) are becoming more common over time. Can we prove that? No. But the fact that it’s happening at all is an outrage.

And, btw, if some medical professional writes me to tell me this hardly ever happens… The fact that is that they won’t have any more hard data to base that belief on than I do in regard to my own suspicions. –Stephen Drake

Terrie Lincoln: “How I DIDN’T Die”

"end of life", blog recommendations, media coverage, medical decisionmaking, Our News & Commentary Blog, stories

Terrie Lincoln works in the same building that hosts Not Dead Yet. She has an important story to share – and one that may bear similarity to other folks who have had “near-misses” with “end of life decisions.”

Today, Terrie shares her story on the blog at the Center for Disability Rights. I share the story in its entirety and will save my comments for tomorrow. For today, please read what Terrie has to say, without further editorial comment from me.

How I DIDN’T Die

Posted on June 16, 2009

By Terrie Lincoln, Systems Advocate

For several months, I’ve been polishing the story of my recovery from the accident that brought me into the world of disability. Until recently, I hadn’t talked much about this period of my life. The memories can still make me angry. The anger isn’t about my disability, though. The anger is about the doctors that didn’t think I would have a life worth living – and how hard my family had to fight to make sure I received the treatment I needed to survive.

Folks at CDR and Not Dead Yet (NDY) have been discussing how and when to best launch this story when an opportunity unexpectedly came up. Stephen Drake of NDY was contacted by someone from “How We Die,” a website and TV series devoted to “end of life” situations. After a discussion with Stephen, the representative from the show became convinced that stories like mine should be included – the stories of people who escaped death due to families that resisted unrelenting pressure from medical staff to disconnect life support technology.

Information on the website is included below. They want more stories like mine and I know they’re out there. Please submit your stories of “near death” experiences due to negative medical attitudes – to the website below, to me and to Stephen Drake at Not Dead Yet.

How I DIDN’T Die

by Terrie Lincoln

If my family had listened to the doctors 12 years ago, I wouldn’t be able to tell you my story.

My name is Terrie Lincoln and I am a 31 year old quadriplegic. I live in Rochester, New York and work as a Systems Advocate at the Regional Center for Independent Living. I have a degree in social services and a bachelor’s degree in public administration. I am currently working on my master’s in social work.

At the age of 19, I had an automobile accident. They had to use the Jaws of Life to free me from the wreck and rush me to the hospital. After I got there, my family and friends learned I severed my spine and broke my neck. At that moment I had no idea what was wrong with me, since I was in shock and slipping in and out of a coma.

I was air-lifted to a nearby hospital in West Virginia a few hours later. The doctors then told my parents they were going to do emergency surgery on my neck — a neck fusion. They had to put a plate in my neck. The doctors also told my parents while I was being prepped that there was no way I could survive a broken neck. They said nobody lives with a broken neck. My Mom said: “We’ll see about that.”

The surgery turned out well and I started recuperating. While I was lying in the hospital bed that did not rotate because they did not want to injure me more, the doctors would come in and ask my mom if she was ready to pull the plug on me. “Why would I want to do that?” she would ask? The doctors answered, “What kind of life will she have— she won’t. She won’t be able to dance, walk, work, have a social life, or be independent.”

My mom, being the strong woman she is, asked the doctor if he would pull the plug on his own son/daughter. He walked out without answering. The next day when the doctor came in my dad was there with my mom. The doctor informed us that I was going to be in a veggie state for the rest of my life. First of all, who uses the word “veggie”? Anyway, my dad asked what veggie I was going to be because I hated green beans and would be mad if I was one.

The doctor said he didn’t find that funny and felt it was inappropriate. My mom said she felt he was being inappropriate by coming in every day and telling her to pull the plug on her daughter. The doctor responded that any good mother would pull the plug instead of seeing their baby suffer. At that moment, my mom leaped over my bed and started choking and attacking the doctor.

The doctors must have known they were fighting a battle they were not going to win. They knew they were killing me slowly with the lack of care I was receiving. Within fifteen days of being there, I had no bowel movement (they were scared to roll me), aspirated, had pneumonia, and collapsed lungs which they did not want to focus on at the moment. I was life flighted out on the fifteenth day.

Once I arrived in Columbus, OH we felt I was on my way to recovery. I had a new team of doctors who specialized in spinal cord injuries. The relationships with the doctors started off more positive than the last set until the first time I died, which was about 3 weeks after I arrived. I was a code blue and they resuscitated me but didn’t offer any suggestions on how to inflate my lungs or help me breathe.

Over the weeks I got worse and worse. Pneumonia was causing my lungs to fill and I was constantly flat lining (electrical time sequence measurement that shows no heart activity). The team of doctors asked: do you want to pull the plug? They said you could take her off her feeding tube and we could induce her into a coma and she won’t suffer.

It took my mom following one of the doctors around all day and to his car at the end of his shift to get him to open up and talk. She went into his office and grabbed a picture of his family and held it up to him and asked, “What would you do? Would you let them pull the plug on the one you loved without doing everything you could?”

My mom came back to my room and I remember seeing her cry for the first time. She held my hand, said a prayer, and promised me everything would be OK. She said she would fight to the end even if she had to tear the hospital apart.

The doctors came in the next morning earlier than usual and told us they were prepping me for surgery. My mom asked what kind. He said he couldn’t sleep the night before because of her and he was going to put me on a ventilator, which would breathe for me. When I got out of surgery they had a rotating bed waiting for me. The bed helped with weight shifts and shook — to help break up the stuff in my lungs.

After a matter of weeks, my health started improving. I had color back, no bed sores, regular bowel movements, and my pneumonia was improving. I got released after 3 months from the main hospital to a nursing home within the hospital. This section was for people who were in poor condition (not expected to make it) and those who had to live with a ventilator.

During the time I was there I shocked everyone. I refused to have my feeding tube, G-tube, and J-tube anymore. I was tired of being poked and going in and out of surgery for no reason. I felt safer and healthier having the tubes out instead of in.

We started working on goals and weaning off the ventilator. We knew my health was improving and we were thanking Jesus every day. I was spending hours a day off the ventilator and the doctors were still asking if I wanted to live the rest of my life with this condition. If I chose no, they would keep me off the ventilator and I would die. I could get injected with Morphine so I couldn’t feel it.

They’d work at my parents, saying things like: “Your daughter was so active before this accident and now she’s nothing. She’s just like Christopher Reeve, she will need help with everything, she won’t be able to push her own chair. She will have to use a sip and puff device.”

Then they’d work on me. Saying stuff like: “Are you sure this is something you can live with? Do you want to spend the rest of your life on a ventilator?”

These are all the things we heard every day even though my health was improving. What gives them the right to convince someone to end their life?

My respiratory therapist said when I get off the ventilator completely I could go to physical therapy. One Friday we did our daily disconnecting of the ventilator – but this time we never connected it back. I ended up staying off of the ventilator for good.

Weeks later I started therapy and eventually got discharged after 5 months of being in the hospital. When I returned for my follow-up appointment a year later I made it a priority to see that team of doctors. When I rolled into the offices pushing my own power chair, without a ventilator, and healthy as can be, their jaws dropped to the floor and their eyes began to fill with tears.

Through my journey, I could not have done it without my two biggest advocates—Jesus and my mommy. She never stopped fighting from day one and never took no for an answer.

TV Series and Website Seeking Stories on How We Die

A new Website and TV series is looking for first-person stories from patients, their families, loved ones, and doctors about how personal experiences have shaped what we believe about death and dying, and about the decisions we make for ourselves, for loved ones, or for patients at the end of life. The website is: http://how-we-die.org/HowWeDie

The series, tentatively titled “Stories,” is being developed by Marc N. Weiss, creator of the long-running PBS series P.O.V. and Tom Yellin, a veteran network news and public affairs producer. The series will explore experiences that tested or challenged their values and beliefs about who decides when and how we die, and what role, if any, government and healthcare institutions should play in those decisions. Visit the site and submit your story!http://how-we-die.org/HowWeDie

That’s all for now. Part 2 (meaning my 2 cents) coming tomorrow. –Stephen Drake


Autube Podcast: A conversation with Stephen Drake

advocacy, autism, media coverage, neurodiversity, Our News & Commentary Blog, podcast

Well, if anyone is curious as to what the voice behind the typing sounds like, I am up live on a podcast on Autube.

Autube, funded by the Dan Marino Foundation, is “an issues-driven web channel enabling exchange of ideas for people with autism.” The site is designed and operated by Kent Creative. The podcast is an edited version of an interview of me that was conducted by Jon Kent, president of Kent Creative.

A few words about the interview:

  • My intonation is uneven and my speech hesitations worse than usual – a result of doing the interview while imitrex and a migraine battling it out in my skull.
  • There are a couple of places where I laugh (kind of) and it might seem weird. In at least one of those places – talking about “aversives” – it was more of a nervous “tic” talking about something I hate looking back at, but feel I have a duty to do just that.
  • A lot of specific information about media coverage and advocacy groups was edited out of the interview. This is understandable but regrettable. Hence, the quote from a leader of a Canadian “right to die” group equating the length of a girl with cerebral palsy’s life with a prison sentence isn’t mentioned (Marilyn Seguin on Tracy Latimer). Also missing is a lengthy discussion of the coverage of Katie McCarron’s murder – and the role that specific advocacy groups (e.g. Autism Speaks, Autism Society of Illinois, ANSWERS) played in promoting a “blame the victim” theme in coverage of her death.
  • Finally, this is in audio only. The site is a new one and they are working at providing print transcripts of podcasts.

So, for anyone who is interested, here is a discussion of some of my journey through life and the advocacy work I do now:

A conversation with Stephen Drake (mp3 format)

The upside of the omission of some of my more pointed and specific references, of course, is that I may be spared an increase in hate mail/comments. –Stephen Drake

Phil. Inquirer: Art Caplan Delivers Some Truth About Kevorkian, But Misses (or Evades) His Real Impact on Assisted Suicide Movement

Art Caplan, assisted suicide, barbara coombs lee, blog recommendations, Kevorkian, Our News & Commentary Blog, reality check, Timothy Quill

On Monday, June 8, the Philadelphia Inquirer published an op-ed by bioethicist Art Caplan. Expressing his concern over the news that Al Pacino plans to play Jack Kevorkian in a movie for HBO, Caplan thought it was time to do some preemptive truth-telling about Jack Kevorkian. His commentary is titled “The truth: Kevorkian was less than noble.”

Caplan does an excellent job in describing the callous, self-aggrandizing reality behind the mythology that was built around the man:

Kevorkian was always about Jack as much as he was about the strangers he briefly met and dispatched. When I asked him once if he were aware that one of his victims had a long history of severe depression and had spent many years in a psychiatric hospital, he snorted and replied, “How am I supposed to know all the details of her life?”

Where I depart from Caplan is in his description of Kevorkian’s relationship to the efforts of the movement – of the organizations and activists who pushed legalization of assisted suicide:

Despite his skill in administering potassium chloride to the fearful, disabled, lonely, and inadequately treated, Kevorkian was a poor choice to lead the movement to legalize assisted suicide.

This is where I start to scratch my head. No one ever seriously suggested that Kevorkian lead the movement to legalize assisted suicide. Nevertheless, I would argue – seriously – that Kevorkian was the best thing that ever happened to the movement, due to the shrewd way in which the “mainstream” organizations dealt with him.

Here’s where I have to give a little history. Before the start of Kevorkian’s career encouraging and facilitating sick and disabled people to kill themselves, there were two “extremes” to the assisted suicide debate. At one end were people who opposed the practice and at the other end were organizations – Hemlock and Compassion in Dying – that advocated for legalization of the practice under superficially strict conditions.

Then Kevorkian came along – his demeanor, his open defiance of the law, and his wide-open acceptance policy in terms of “helping” defined a new extreme edge – which moved organizations such as Hemlock and Compassion in Dying closer to the middle in terms of public perception, even though their goals remained unchanged. (Note: Compassion in Dying and Hemlock combined to form the current organization Compassion & Choices).

While I have been aware of this dynamic for years, I really didn’t have a good framework with which to talk about it.

I do now.

There are a number of names for this type of argument or political strategy. “Gonzo Galore” at the Gonzolog has listed and described a number of these variations of a logical fallacy (fallacious but often effective) in her blog post “Argument to moderation“:

Hey, it’s like Tuesday, idk, time for picking on quitical thinking, LoL, ‘cos like wtf is wrong with some pplz logic? But first, check out this fallacy:

Argument to moderation:
argumentum ad temperantiam, also known as middle ground, false compromise, gray fallacy and the golden mean fallacy) is a logical fallacy which asserts that a compromise between two positions is correct. The middle ground is often invoked when there are sharply contrasting views that are deeply entrenched. While an outcome that accommodates both parties to some extent is more desirable than an outcome that pleases nobody, it is not necessarily correct.
Wikipedia

False compromise:
X and Y are opposite alternatives. So Z, a middle path, is the best choice.
Avoid extremes. Seek compromise, a moderate, middle way. Take averages. Assume that any polarized view is automatically wrong.
ChangingMinds.org

Middle ground:
This fallacy is committed when it is assumed that the middle position between two extremes must be correct simply because it is the middle position. this sort of “reasoning” has the following form:

1. Position A and B are two extreme positions.
2. C is a position that rests in the middle between A and B.
3. Therefore C is the correct position.
The Nizkor Project

Oh good, now that we’ve learned something, we need examples!

Gonzo is just one of the many prolific and outstanding writers in the neurodiversity community. Her series on logical fallacies are an effort to help other autistic people and others somewhere “on the spectrum” to counter the bs masquerading as logical argument that get lobbed their way – mostly by people who are offended that someone who has a label like aspergers/autism/nonverbal learning disabilities doesn’t want to be “cured.”

She’s right to jump on it. Going beyond argument to strategy, this approach – fallacious or not – is highly effective.

That’s where Kevorkian and the “mainstream” organizations come in. As I said before, Kevorkian’s activities and rhetoric defined a new extreme edge. But it didn’t stop there. Obviously realizing the value of no longer being the ones defining the extreme edge, leaders took efforts to paint Kevorkian as “extreme” and themselves as “moderate.”

Here is just one example of prominent assisted suicide advocates using Kevorkian to reposition themselves and their organizations away from the “extreme” to more comfortable middle ground.

From a Seattle Times article published on March 27, 1999, after the conviction of Jack Kevorkian on second-degree murder charges for his role in the death of Thomas Youk:

“It demonstrates just how far outside the mainstream his actions are,” said Barbara Coombs Lee, executive director of the Compassion in Dying Federation, a national right-to-die organization based in Oregon.

“This was not about assisted dying as we know it here in Oregon, or as Compassion has advocated for it. Or as we have counseled patients since 1993,” she said.

“This has more to do with Dr. Kevorkian’s unique and flamboyant way of flouting the law than it has to do with physician-assisted suicide, as an issue or a policy.”

Farther down, though, is what I like to refer to as “the money quote”:

(Faye) Girsh and Coombs Lee agreed that Kevorkian’s actions help define a mainstream position on assisted suicide. “If you see the extremes, clearly, you can recognize the moderate, compassionate middle,” Coombs Lee said.

I want to stress that I got to this article through a very quick search using google. If I wanted to spend the time sorting through my files, I could come up with many more examples of Coombs Lee, Tim Quill and others doing their best to use Kevorkian to shift themselves to the middle – and presumably higher moral – ground.

There are other points and critiques I could make of Caplan’s commentary, but they would take a lot of space. As Caplan’s own attempt at clarifying the Kevorkian mythology shows, it takes a lot of information and space to counter well-established misinformation. –Stephen Drake

ADDENDUM: I received a comment to this post that I think should be added here. It’s from Gonzo, whose work was central in helping me write this piece:

Hey thanks Stephen!!
I want to point out, that my “idk, wtf, lol” writing style in this post was satirizing the mindless comments in a facebook group.

When it comes to disability rights, there are issues, that are highly complex: eugenics, assisted suicide and ethical science, etc, and the problem is that most people form opinions based on barely any information on the subject.

Words like “cure” sound really harmless, so the casual onlooker will not realize all the ehical implications that need to be considered.

Same with assisted suicide, to most it sounds like mercy to let someone with say incurable cancer die, without thinking what this actually means for the disabled.

It’s telling that Kevorkian didn’t care about the woman’s depression, any depressed person without a disability would have been encouraged to get psychiatric help.
In her case it was a good excuse to be rid of her.

Again, I really hope people check Gonzo’s blog out. She’s one of the many autistic bloggers I have listed as “favorites” on my networked blogs feature on facebook.