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Saturday, April 6, 2013

Fear Exists for a Good Reason

Over the past week I have followed the story of Amanda Baggs via various neurodiversity blogs. Baggs who I mentioned in my 500th post is an Autistic and a fascinating writer. She is most well known for her You Tube video "In My Own Language". Based on what I read, Baggs had gastroparesis that caused several instances of of aspiration pneumonia. As I understand it Baggs needed a feeding tube inserted to increase her nutrition and lower the risk of aspiration. This is not complex medical care--I suspect it is standard operating procedure. But her experience has been anything but standard. Multiple neurodiversity blogs and people directly in contact with Baggs have reported she was repeatedly questioned about her decision to get a feeding tube. Thankfully the neurodiversity community in particular and the disability community in general leaped to help and protect Baggs. Her experience in a Burlington Vermont hospital was a nightmare. Fortunately she not only survived but is in fighting spirit. She is writing about what she experienced and its implications. See:

I was deeply moved by Baggs most recent post. What she wrote today is shocking and a testament to how deeply ingrained disability based bigotry is within the American health care system. Below is her entire post.

“Are you at peace with your decision?”

Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.
He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.
“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.
I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.
And yet she likened it to the recommended harassment that people who choose abortion get — or for that matter, people who choose not to abort a fetus with disabilities. She said it was bullying, harassment, pressure to end my own life, no matter how genteel it looked on the outside. Who the hell gets asked repeatedly if they’re at peace with wanting to be alive? For me, choosing a feeding tube is choosing life. There were risks, there remain risks, but the risk of not getting the tube was imminent death, so, yeah. A no brainer, for me. When you choose between two risky things, you choose the one with the most possibility of survival. And feeding tubes are safer than aspiration pneumonia by far.
Are you at peace with your decision? Really? Seriously? Who asks that? Someone profoundly uncomfortable with the kind of life that requires certain kinds of technology. Someone who overtly or covertly hates disabled people.
I intend to use the life this feeding tube gives me, to ensure that no other patient in this hospital has to go through what I’ve been through. That nobody gets asked this question for choosing to live. Not even once. That doctors don’t get to try to persuade patients, especially disabled and other hated patients, that its better to reject life saving treatments. Regardless of what the doctor thinks. When I’m through with them, when the Vermont disability community is through with them, they will no longer be allowed to go there. They can stay bigots if they feel like but they won’t be allowed to express it on the job.
Because we don’t just naturally want to die the moment our body requires some kind of nonstandard way of sustaining itself. Right now I am hooked up to a machine pumping food into my intestines and I LOVE IT BECAUSE IT MEANS LIFE.

Genteel pressure to die. I too experienced that genteel pressure. Such pressure is put in ever so polite terms. For Baggs it was "Would you like to consider alternative treatments"? The non genteel interpretation is "Would you like to die"? For me a hospitalist stated "We can make you comfortable if you decide to forego antibiotics". The non genteel interpretation: "We can let you die."  This genteel pressure to die is not out of the norm. In fact I cringe when I hear the term "patient centered care". My translation of "patient centered care" is "you are on your own". Being on your own in a hospital is dangerous for any person but for a person with a disability the risks are exponentially greater. We people with a disability represent the limits of medical science and its failure. We are perceived to be in pain; suffering horrific indignities because we have lost our autonomy. Our bodies are compromised, abnormal. We are confined to a wheelchair. We are bed bound. Our life is a disaster. But wait! There is hope. We miserable cripples have the power to say no more. Hence the physician "caring" for Baggs asks "Are you at peace with your decision". The internists and residents that accompanied the physician have learned a lesson in empathy--or at least that is likely what the physician in question believed. I would offer the lesson learned was much more basic. Death is preferable to living a life with a disability. Who would want to live like that? Imagine if you had Autism. How horrible. I suggest we need to ask a very different set of questions. In Baggs case, the question is not if you want to live but rather how we can we as physicians charged with your care empower you to live a full life. 


Anonymous said...

Great post, Bill. Here's my offering regarding the situation:

"Amanda Baggs, the Pressure to Die, and the Case Against Assisted Suicide":

Matthew Smith said...

I know a few people in the UK who have needed the kind of feeding tube Amanda has had fitted. I am not sure how common it is over there, but it is quite specialised, and local hospitals cannot do it (unlike fitting a standard PEG tube). A lot of those I know have Ehlers-Danlos syndrome, a connective tissue disorder that makes fitting anything to soft tissue difficult, and they in particular often have to go a long way (like London) to get the tube fitted. Not sure if that is the case with Amanda.

However, it's pretty staggering that hospitals should encourage someone to accept palliative care when all they need is a feeding tube. A possible reason could be that rather than thinking her life is already not worth living, they might think that about not being able to eat food, given how fundamental it is to our culture, how much of a pleasure and comfort it is, etc. Amanda is very lucky to be well-known to the autism and wider disability community, and such things shouldn't make a difference.

Middle Child said...

Considering that one in 88 Australian Babies develop Autism -
it is becoming frighteningly common these days - used to be hardly any when I was young. Another way of getting rid of those who are judged by the bastard doctors to have no life quality = is to get the relatives in a "conference" and tell them that there is nothing more they can do for (to) their loved one - and have that box of tissues ready - all sympathy - relatives are all on side and convinced that the docs have only the best interests of the victim at heart...then its a united front often... I actually feel sick in the guts when I read this stuff but I hope I an granted a good long life so I can do whatever it takes to fight this eugenics movement - All praise to Amanda

Eric Fischer said...

What is despicable is that by chance another person was present. These kind of conversations, where a physician implies that you should really consider ending a person's life, take place when a person is at their most vulnerable. It should be forbidden for any physician to have this kind of conversation without a proper assessment of the person's state of mind ( I know this can be a dangerous double edged sword as well) plus the presence of at least one other adult of the patient's choosing.
When the head of PICU said, as much for my benefit as for the interns, "It is decidedly better that he die at home", I was strong enough to not be influenced by it. I wanted to use the line from a film, "I hope I can do the same for you some day".
The insidious behavior by physicians who happily embrace the growing acceptance of choosing death is horrific. Their influence on parents, especially in European countries where it is acceptable to euthanize disabled children after they are born, should be addressed.

william Peace said...

Rachel, I am delighted by your post. It is important to have a person such as yourself that has Autism to write about Amanda Bags.
Matthew, Burlington Vermont is a university town with top notch medical facilities. Even if the sort of G tube was highly specialized procedure there was most likely a trained person present. I am sadly not at all surprised Baggs was pushed to consider palliative care. The assault on the rights of people with a disability is not over the top and obvious as it is in the UK. We have laws and those laws must be obeyed. This calls for a different sort of discrimination and falls under the rubric of "patient centered care". Sure we make our own decisions but rely on physicians to guide us. And too often that guidance is to consider "alternatives", a nice way of saying you should die. This plays into the fear of disability and a bad death.

MiddleChild and Eric, Others to use the anthropological term are not valued. And others in the case of the health care industry covers a wide swath of people. Draconian measures are undertaken to insure unwanted others do not drain limited resources in a hospital setting.

sanda said...

Bravo on your number of "hits" (as in baseball) getting to 5000! Stephen Drake gave the word and link. Irony in that some of us can "suicide by medical care" (as in very allergic and have had some scarey experiences at the hands of the medical workers). Amanda Baggs is really getting out her story and I'm proud to be among such great bloggers. (Too ill with CFS/ME to do a blog myself.)

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