as small as a world and as large as alone, ravenmaw: youneedacat: slpontv: “You know as...

4:57am October 14, 2013

ravenmaw:

youneedacat:

slpontv:

“You know as well as I do that a feeding tube is psychologically devastating; it takes away a man’s dignity.” Miranda Bailey, Grey’s Anantomy
Why would a feeding tube be psychologically devastating? Well because it keeps people from enjoying one of life’s great pleasures: eating. It may cause social withdrawal and depression.
One of my SLP friends found this and thought it was perfect for this blog (she was right)

I’m sorry to possibly intrude into your blog. But it’s too important. I have to say this.
I actually love Grey’s Anatomy because it gives me a fairly realistic window into the views of medical professionals. And I know that this view on feeding tubes is by far the most common I’ve seen among medical professionals in my personal research on the topic. Which has been considerable.
But I have to tell you this because you are a future medical professional. And what I’m telling you may one day change someone’s life. Or save it.
People with feeding tubes (or “tubies” as we sometimes call ourselves) vary in how much we want our feeding tube and how we feel about it. Some love our tubes. Some hate our tubes. Those of us who get nasal tubes in urgent medical circumstances may find it uncomfortable or even traumatic. Some go through an extended grieving period over the loss of food, some never look back, and some have never eaten in our lives and actually resent the introduction of food once we no longer need our tubes. But most of us, especially those with long term tubes, very much prefer our tubes to the alternative. And most of us don’t see it as a horrible undignified nightmare that we will never wake up from, the way the combination of words and image make it sound.
My mother and I have both had feeding tubes. Mine is a permanent GJ tube, my mother’s was a temporary NG tube. Both of us turned out to be the kind of tubies who absolutely love our tubes, because they were so much more efficient and painless than eating was for us, and in my case because it has truly saved my life. Also the feeding tube doesn’t keep me from eating — gastroparesis does!
All feeding tubes can be reversed if the patient does not want them anymore. Yet I almost never got the chance to get my tube. And it was because my doctors in the hospital had absolutely the same sentiments expressed in the original quote and photograph.
I have gastroparesis and bronchiectasis. That means that my stomach is paralyzed and my lungs are prone to infections that they can’t clear. The gastroparesis caused stomach acid to build up in my stomach instead of draining into my intestines. I would wake up choking on bile, spend an hour coughing it out of my lungs, and then get aspiration pneumonia. I got pneumonia so often it was life threatening. I was on a liquid diet but I was losing a lot of weight because I couldn’t drink more than an Ensure or two in a day without throwing up.
The medical indication in that situation is a GJ tube. One part would carry food, water, and medication directly into my intestines. The other part would allow me to drain stomach fluids out of my stomach into a bag or cup so they wouldn’t go up into my lungs. (I also have dysphagia, the condition tagged in the OP, but not bad enough to need a tube, I just can’t swallow things like pills.)
I kept getting pneumonia and my lungs kept getting worse. And I was losing weight. I ended up in the hospital and they said I absolutely needed a tube or I would probably die soon from getting too many lung infections too close together.
But.
They wouldn’t give me the tube.
They didn’t deny it outright. They couldn’t. They knew it would never stand up to any level of investigation, because I needed it. In fact they’d been talking about getting me a feeding tube ever since I first got diagnosed several months before. Everyone agreed it was medically necessary. They just didn’t want me to have it.
So every day, several times a day, a different doctor or resident would come into my room and try to talk me out of getting the tube. They knew that getting me to refuse it was the only legal way they could stop me getting it, so they did everything in their power to convince me.
They told me horror stories. They told me I would, as a cognitively disabled person, have trouble taking care of it. They told me how unpleasant it is not to be able to eat… as if I could eat in the first place, I was already on Ensure! (And a GJ tube does not interfere with eating.) They told me how unhappy I would be. They talked about “quality of life”, which is always a warning sign to me that someone is about to drown me in “better dead than disabled” pity. They told me over and over to consider other options. I steadfastly said I wanted the tube. It began to feel like harassment.
We asked them if I would likely for without the tube. They said yes. We asked if there were actual other options besides death. They said no. They said “…but still, consider other options.”
Whether it’s wheelchairs, feeding tubes, or respirators, the medical profession tends to see technology that improves and prolongs the lives of disabled people as some kind of tragedy. They see us often as victims of a fate worse than death. I’m a long time member of the disability rights movement so I knew what was up: medical professionals consistently estimate disabled people’s quality of life and happiness as much lower than disabled people describe it ourselves regardless of how severely disabled we are. I knew that the doctors firmly believed I would literally be better off dying than facing the “tragedy” and “indignity” of living with a feeding tube.
It was incredibly stressful to be sick with pneumonia, bone tired, and have someone come into my room every day and try yet another tactic to persuade me to die. My power of attorney for health-care said that she sometimes came home from visiting me and threw up from the stress. It took her months to recover and she was not even the sick one.
Eventually she started blogging on tumblr what was happening to me and I joined in. We got the disability community to call the hospital in large numbers to say they were watching what was happening to me. Suddenly, within a day, they stopped fighting me and said “you’ll get the tube in two days”. But one doctor still couldn’t resist visiting my room with a gaggle of med students in tow to ask me, “Are you at peace with your decision?” He said it so solemnly it sounded as if I’d chosen death, not life! When I said yes of course I am, he repeated the question a few times and left.
I got my feeding tube. I had some complications but I instantly loved it. I had been aspirating several times a week without it. I have only aspirated once in the six months since I got it. I love it so much. It is efficient in a way that eating is not, especially when you have to spend all day holding your meal down. I rarely think of food, but if I really want the experience of eating, I either go somewhere with wonderful cooking smells, or I chew or suck food and then spit it out. I thought I would miss food far more than I do. I have also developed the ability to accurately imagine the taste of nearly any food I can think up, and that’s almost as good as eating it.
Moreover, I’m alive! I don’t know how long I will live, because I could still aspirate if my drainage bag failed. But I could live a full lifespan this way if I’m lucky. And I’ve already lived longer than I would have without it.
The tube has not psychologically devastated me in the least bit. The hospital stay, on the other hand… I still have PTSD-like symptoms from lying there weak and exhausted and wondering if I’d be allowed to live. As for dignity, I feel more dignified this way than I do puking all the time.
Many people live with a feeding tube their entire life and never feel too bad about it. Other people may fear the idea and pity us but we don’t pity ourselves and hate our lives nearly as much as medical people seem to expect.
We don’t all like our tubes, and some of us have bad complications like pain and infections and skin breakdown. But very few of us who have tubes long term treat them with extreme regret or loathing. If we hated them that much we would ask our doctors to remove them. Even tubes like mine don’t have to be permanent, if I didn’t want it I could have it removed, the stoma would heal over, and I would let nature take its course (that’s a euphemism for a fairly unpleasant death from pneumonia, starvation, or dehydration).
But you don’t see tubies removing our tubes and dying in huge numbers. If they were the nightmarish loss of dignity the OP suggests, you would see it happen constantly.
What you do see, however, is situations like mine. Where the patient or our family is persuaded by the medical profession to view life with a tube as no real life at all. To not get a tube, to die before we could ever get a tube. In the eyes of many disabled people, me included, that’s little more than murder based on disability related prejudices. And it is a prejudice to assume that something that keeps us alive is an indignity, something to be avoided at all costs.
Not everyone who says that a feeding tube is undignified and horrible is thinking it through all the way. I doubt you have much idea what actually happens to real people based on that idea. But that idea is one short step away from viewing it as a fate worse than death. And when people with power over patients have such a strong prejudice against a life saving medical treatment… lives are lost rather than saved. People die. Needlessly.
If my doctors had won I wouldn’t be here right now. If my doctors hadn’t believed that feeding tubes made life not worth living, that they were undignified, that they were so unpleasant death would be better, I’d never have had the fight to begin with.

this actually hit on and perfectly formulated something i’ve been thinking about since a few weeks into becoming physically disabled, when i started accepting that the pain wasn’t going to go away, overnight or ever
namely: when people go “but how can you live with that?” don’t really comprehend that sometimes, after the initial horror and fear and shock, comes not resignation and not acceptance but somewhere between the two. i mean, i still have a boyfriend and a bestie and hobbies i care very much about. the pain doesn’t change that. i can’t leave the house much, but i can hobble down to the local café sometimes or go to the zoo, if we plan ahead and take precautions.
disability aids, in and of themselves, aren’t the indignity. dying slowly and painfully is an indignity. especially if people are trying to deny you a way to live. not being helped to live fully and well is an indignity.
full disclosure, in case this goes further than just my friends: i have fibromyalgia. it gives me fatigue as well as constant pain. i also have other issues, but developmental and psychiatric issues aren’t the ones being discussed here.

Yeah.And you hear so often that you ought to feel horrible about it all, that you wonder, “Am I totally weird?” But it’s not weird. It’s the norm to arrive at some level of acceptance, whether grudgingly, or all the way to outright celebration and enjoyment, or somewhere in between, it changes every day for some people. Some people don’t end up adjusting things but they’re actually not in the majority. And I’ve noticed sometimes it’s actually the people with the most serious problems who are the best adjusted. But if you don’t adjust, if you curse your life as a disabled person day in and day out, you have a whole society expecting us all to be in that state of mind. It’s really weird, but I have rarely had trouble adjusting to physical disability and chronic illness stuff even when I realize I might die. Especially, actually. There’s something about the finality of death that always makes me adjust better and quicker to a situation. Sometimes I have a grieving period but it’s usually pretty self contained. Like last fall in the hospital I remember crying when I saw food commercials because I realized I would never be eating solid food again. But by spring when I got my feeding tube I was long since over that. Even though I also had to give up the delicious soups my neighbor had been cooking me (she could make any food into a soup version, it was great). Harder to adjust to has been the trauma aspect of my hospitalization last fall, where a lot of awful things happened. But maybe that’s for another post.

youneedacat:

slpontv:

“You know as well as I do that a feeding tube is psychologically devastating; it takes away a man’s dignity.” Miranda Bailey, Grey’s Anantomy

Why would a feeding tube be psychologically devastating? Well because it keeps people from enjoying one of life’s great pleasures: eating. It may cause social withdrawal and depression.

One of my SLP friends found this and thought it was perfect for this blog (she was right)

I’m sorry to possibly intrude into your blog. But it’s too important. I have to say this.

I actually love Grey’s Anatomy because it gives me a fairly realistic window into the views of medical professionals. And I know that this view on feeding tubes is by far the most common I’ve seen among medical professionals in my personal research on the topic. Which has been considerable.

But I have to tell you this because you are a future medical professional. And what I’m telling you may one day change someone’s life. Or save it.

People with feeding tubes (or “tubies” as we sometimes call ourselves) vary in how much we want our feeding tube and how we feel about it. Some love our tubes. Some hate our tubes. Those of us who get nasal tubes in urgent medical circumstances may find it uncomfortable or even traumatic. Some go through an extended grieving period over the loss of food, some never look back, and some have never eaten in our lives and actually resent the introduction of food once we no longer need our tubes. But most of us, especially those with long term tubes, very much prefer our tubes to the alternative. And most of us don’t see it as a horrible undignified nightmare that we will never wake up from, the way the combination of words and image make it sound.

My mother and I have both had feeding tubes. Mine is a permanent GJ tube, my mother’s was a temporary NG tube. Both of us turned out to be the kind of tubies who absolutely love our tubes, because they were so much more efficient and painless than eating was for us, and in my case because it has truly saved my life. Also the feeding tube doesn’t keep me from eating — gastroparesis does!

All feeding tubes can be reversed if the patient does not want them anymore. Yet I almost never got the chance to get my tube. And it was because my doctors in the hospital had absolutely the same sentiments expressed in the original quote and photograph.

I have gastroparesis and bronchiectasis. That means that my stomach is paralyzed and my lungs are prone to infections that they can’t clear. The gastroparesis caused stomach acid to build up in my stomach instead of draining into my intestines. I would wake up choking on bile, spend an hour coughing it out of my lungs, and then get aspiration pneumonia. I got pneumonia so often it was life threatening. I was on a liquid diet but I was losing a lot of weight because I couldn’t drink more than an Ensure or two in a day without throwing up.

The medical indication in that situation is a GJ tube. One part would carry food, water, and medication directly into my intestines. The other part would allow me to drain stomach fluids out of my stomach into a bag or cup so they wouldn’t go up into my lungs. (I also have dysphagia, the condition tagged in the OP, but not bad enough to need a tube, I just can’t swallow things like pills.)

I kept getting pneumonia and my lungs kept getting worse. And I was losing weight. I ended up in the hospital and they said I absolutely needed a tube or I would probably die soon from getting too many lung infections too close together.

But.

They wouldn’t give me the tube.

They didn’t deny it outright. They couldn’t. They knew it would never stand up to any level of investigation, because I needed it. In fact they’d been talking about getting me a feeding tube ever since I first got diagnosed several months before. Everyone agreed it was medically necessary. They just didn’t want me to have it.

So every day, several times a day, a different doctor or resident would come into my room and try to talk me out of getting the tube. They knew that getting me to refuse it was the only legal way they could stop me getting it, so they did everything in their power to convince me.

They told me horror stories. They told me I would, as a cognitively disabled person, have trouble taking care of it. They told me how unpleasant it is not to be able to eat… as if I could eat in the first place, I was already on Ensure! (And a GJ tube does not interfere with eating.) They told me how unhappy I would be. They talked about “quality of life”, which is always a warning sign to me that someone is about to drown me in “better dead than disabled” pity. They told me over and over to consider other options. I steadfastly said I wanted the tube. It began to feel like harassment.

We asked them if I would likely for without the tube. They said yes. We asked if there were actual other options besides death. They said no. They said “…but still, consider other options.”

Whether it’s wheelchairs, feeding tubes, or respirators, the medical profession tends to see technology that improves and prolongs the lives of disabled people as some kind of tragedy. They see us often as victims of a fate worse than death. I’m a long time member of the disability rights movement so I knew what was up: medical professionals consistently estimate disabled people’s quality of life and happiness as much lower than disabled people describe it ourselves regardless of how severely disabled we are. I knew that the doctors firmly believed I would literally be better off dying than facing the “tragedy” and “indignity” of living with a feeding tube.

It was incredibly stressful to be sick with pneumonia, bone tired, and have someone come into my room every day and try yet another tactic to persuade me to die. My power of attorney for health-care said that she sometimes came home from visiting me and threw up from the stress. It took her months to recover and she was not even the sick one.

Eventually she started blogging on tumblr what was happening to me and I joined in. We got the disability community to call the hospital in large numbers to say they were watching what was happening to me. Suddenly, within a day, they stopped fighting me and said “you’ll get the tube in two days”. But one doctor still couldn’t resist visiting my room with a gaggle of med students in tow to ask me, “Are you at peace with your decision?” He said it so solemnly it sounded as if I’d chosen death, not life! When I said yes of course I am, he repeated the question a few times and left.

I got my feeding tube. I had some complications but I instantly loved it. I had been aspirating several times a week without it. I have only aspirated once in the six months since I got it. I love it so much. It is efficient in a way that eating is not, especially when you have to spend all day holding your meal down. I rarely think of food, but if I really want the experience of eating, I either go somewhere with wonderful cooking smells, or I chew or suck food and then spit it out. I thought I would miss food far more than I do. I have also developed the ability to accurately imagine the taste of nearly any food I can think up, and that’s almost as good as eating it.

Moreover, I’m alive! I don’t know how long I will live, because I could still aspirate if my drainage bag failed. But I could live a full lifespan this way if I’m lucky. And I’ve already lived longer than I would have without it.

The tube has not psychologically devastated me in the least bit. The hospital stay, on the other hand… I still have PTSD-like symptoms from lying there weak and exhausted and wondering if I’d be allowed to live. As for dignity, I feel more dignified this way than I do puking all the time.

Many people live with a feeding tube their entire life and never feel too bad about it. Other people may fear the idea and pity us but we don’t pity ourselves and hate our lives nearly as much as medical people seem to expect.

We don’t all like our tubes, and some of us have bad complications like pain and infections and skin breakdown. But very few of us who have tubes long term treat them with extreme regret or loathing. If we hated them that much we would ask our doctors to remove them. Even tubes like mine don’t have to be permanent, if I didn’t want it I could have it removed, the stoma would heal over, and I would let nature take its course (that’s a euphemism for a fairly unpleasant death from pneumonia, starvation, or dehydration).

But you don’t see tubies removing our tubes and dying in huge numbers. If they were the nightmarish loss of dignity the OP suggests, you would see it happen constantly.

What you do see, however, is situations like mine. Where the patient or our family is persuaded by the medical profession to view life with a tube as no real life at all. To not get a tube, to die before we could ever get a tube. In the eyes of many disabled people, me included, that’s little more than murder based on disability related prejudices. And it is a prejudice to assume that something that keeps us alive is an indignity, something to be avoided at all costs.

Not everyone who says that a feeding tube is undignified and horrible is thinking it through all the way. I doubt you have much idea what actually happens to real people based on that idea. But that idea is one short step away from viewing it as a fate worse than death. And when people with power over patients have such a strong prejudice against a life saving medical treatment… lives are lost rather than saved. People die. Needlessly.

If my doctors had won I wouldn’t be here right now. If my doctors hadn’t believed that feeding tubes made life not worth living, that they were undignified, that they were so unpleasant death would be better, I’d never have had the fight to begin with.

this actually hit on and perfectly formulated something i’ve been thinking about since a few weeks into becoming physically disabled, when i started accepting that the pain wasn’t going to go away, overnight or ever

namely: when people go “but how can you live with that?” don’t really comprehend that sometimes, after the initial horror and fear and shock, comes not resignation and not acceptance but somewhere between the two. i mean, i still have a boyfriend and a bestie and hobbies i care very much about. the pain doesn’t change that. i can’t leave the house much, but i can hobble down to the local café sometimes or go to the zoo, if we plan ahead and take precautions.

disability aids, in and of themselves, aren’t the indignity. dying slowly and painfully is an indignity. especially if people are trying to deny you a way to live. not being helped to live fully and well is an indignity.

full disclosure, in case this goes further than just my friends: i have fibromyalgia. it gives me fatigue as well as constant pain. i also have other issues, but developmental and psychiatric issues aren’t the ones being discussed here.

Yeah.

And you hear so often that you ought to feel horrible about it all, that you wonder, “Am I totally weird?”

But it’s not weird. It’s the norm to arrive at some level of acceptance, whether grudgingly, or all the way to outright celebration and enjoyment, or somewhere in between, it changes every day for some people.

Some people don’t end up adjusting things but they’re actually not in the majority. And I’ve noticed sometimes it’s actually the people with the most serious problems who are the best adjusted. But if you don’t adjust, if you curse your life as a disabled person day in and day out, you have a whole society expecting us all to be in that state of mind.

It’s really weird, but I have rarely had trouble adjusting to physical disability and chronic illness stuff even when I realize I might die. Especially, actually. There’s something about the finality of death that always makes me adjust better and quicker to a situation. Sometimes I have a grieving period but it’s usually pretty self contained.

Like last fall in the hospital I remember crying when I saw food commercials because I realized I would never be eating solid food again. But by spring when I got my feeding tube I was long since over that. Even though I also had to give up the delicious soups my neighbor had been cooking me (she could make any food into a soup version, it was great).

Harder to adjust to has been the trauma aspect of my hospitalization last fall, where a lot of awful things happened. But maybe that’s for another post.

Notes: