Systemic medical discrimation and abuse, pt. 2: Happening right now

In the first part, I talked some about the current public scandals in the UK, in which ridiculously high death rates finally prompted some review of horrible situations which had been allowed to continue for many years. From the end:

Just being overworked is not an adequate explanation, much less excuse, for placing such a low priority on providing very basic, often lifesaving care, to certain groups of people. Also placing low priority on staffing for, say, geriatric wards where they know they are going to need to provide more care than they would with younger, more able-bodied people (like, erm, making sure people can eat and drink) is part and parcel of the same problem. Deciding that certain kinds of people don’t deserve what limited resources are available is a very different matter. I am afraid that this is considered normal and inevitable enough not to even warrant much comment, which is disturbing in its own way.

Understaffing does not, in itself, create depraved indifference, and ”callous disregard for human life” is exactly the underlying problem here. Deciding that certain people do not deserve basic respect and dignity is the problem.

While the focus here has been on older people, I am sure that disabled people have also been getting the short end of the stick here, thanks to other people’s ideas about their worth, “usefulness” and “quality of life”. More on that, in the second part. This post has grown, and I don’t want to banish my other major focus here to the bottom of a long single post; it’s too important.

First, a little more general info on the last part, involving people with disabilities, which has also gotten some attention here (if not nearly enough!). In British parlance, “learning disabilities” here means not something like dyslexia, but what get called developmental disabilities in the US and Canada.*

NHS failing people with learning disabilities, says report  (bolding added)

People with learning disabilities are dying on average 16 years earlier than they should, because the NHS does not properly investigate and treat their physical complaints, an inquiry has found.

A confidential inquiry into deaths in the south-west, carried out by Bristol University academics and funded by the Department of Health, has revealed stark inequalities and recommends the creation of a review body to investigate and monitor learning disability deaths across the UK.

The charity Mencap estimates from the review findings that more than 1,200 children and adults die every year because they are not getting proper NHS care. More than a third (37%) are not getting the healthcare they should.

“A scandal of avoidable deaths on the scale of Mid Staffs takes place every year for people with a learning disability in the NHS. These deaths, caused by poor care and delays in diagnosis and treatment, highlight the scale of discrimination faced by disabled patients in the NHS,” said Jan Tregelles, the acting chief executive of Mencap…

“The cause of their premature deaths appears to be because the NHS is not being provided equitably to everyone based on need. People with learning disabilities are struggling to have their illnesses investigated, diagnosed and treated to the same extent as other people. These are shocking findings and must serve as a wakeup call to all of us that action is urgently required.

Mencap | Death by indifference (The report)

Learning disabled people die 16 years earlier than others, finds study (bolding added)

The inquiry also compared a subset of 58 of the 247 people against a comparator group of 58 people without learning disabilities who otherwise shared comparable characteristics. It found significantly more people with learning disabilities experienced difficulties in the diagnosis and treatment of their illness than the comparator group, and all aspects of their care provision, planning, co-ordination and documentation was less good.

It concluded people with learning disabilities were more likely to die of causes that could have been potentially addressed through good-quality healthcare, while the comparator group were more likely to die of lifestyle-related illnesses.

(The case study mentioned at the end there, of Mark Cannon, also involved our local hospital trust which came up in the first part: “A joint report by the local government and health services ombudsmen concluded his original injury was preventable, and his death could possibly have been avoided had Barking, Havering and Redbridge Hospitals NHS Trust provided appropriate care and treatment.”)

DH announces probe into premature deaths of learning disabled people

And last, but not least (and I couldn’t make up this headline): Valuing People Now ‘unrealistic’ due to lack of new funding  *hollow laughter*

About basic physical accessibility problems, but extending further and sometimes becoming outright dangerous: NHS: barriers to equal treatment | Disability Now

With the Care Quality Commission reporting inadequate levels of care with dignity in hospitals, research by Ruth Bailey indicates that disabled people in need of healthcare encounter a system largely ignorant of access needs and how they should be met

It has often struck me that disabled people are sometimes made to feel awkward or out of place in healthcare settings. This seems to have something to do with the fact that what goes on in these settings is necessarily focused on what is wrong with people. Yet when it comes to access in its broadest sense, the NHS assumes nothing is wrong. Its procedures and practices are designed for patients who are ill but non-disabled.

I couldn’t find the actual NHS-affiliated publication I was trying to find related to other barriers to accessing appropriate medical care, across a wide range of disabilities, but yeah. That also plays into the problem of neglect and abuse. If healthcare professionals are not taking actual needs and/or difficulties with communication into account, patients are going to suffer and maybe even die. Even looking at such simple things as having trouble making appointments in the first place, or letting people know you need a drink or pain relief in the hospital. BTDT personally–with good staffing levels in the hospital, harking back to the first part. You can’t say you need the help–repeatedly, if they’re busy–you’re unlikely to get it. Which is no doubt relevant in a number of the reported cases of neglecting elderly people’s basic care needs.

Also, I picked info from the UK mainly because there has been more recent research and attention. In some respects, I expect that theoretically universal access to decent medical care actually makes for better overall results than under the US system. (Yes, there are plenty of people dealing with disabilities not covered by Medicare or Medicaid. People don’t just fall through the cracks, they actively get shoved down into them.)  Having dealt with both systems, I haven’t noticed that much difference in systemic attitudes in this context.

That general lead-in is very relevant background here, plus a good way of postponing going into the more immediately harrowing stuff. *sigh*

One of my friends is currently having serious problems with a hospital in the US. She has multiple disabilities–including autism–and has been treated very badly in ways that indicate a very low regard for her safety and wellbeing. It tears me up every time I read more about it.

The thing is, she does have backup, both in person (with a friend using DPA to try to make sure she receives adequate and appropriate treatment), and from a good number of people online exerting some pressure and making the hospital aware that someone is watching how they’re behaving. This is someone who is able to write about what she is experiencing, and post this to social media. This is a disability rights activist who is aware of what her rights are.

The results still haven’t been good, and most people do not have the knowledgeable support to help keep them safer. Yes, I am very concerned about an individual I care about, but my head just keeps wanting to explode from the scope of the problem. Not to mention the number of people who are just suffering in obscurity, with nobody else really knowing or even caring in some cases.

As girljanitor put it yesterday, in response to one of the latest posts from the hospital:

Bolded: that’s the thing people don’t realize a lot of the time is that this isn’t an “isolated incident.” This is the manifestation of systematic discrimination.

I also am a survivor of medical abuse and discrimination. I’m a survivor of being treated as nonperson, crazy person, less-than-human, doesn’t count, too much trouble, liar, faker, hysterical, exaggerator, drug-seeking, it’s-all-in-my-head, and the recipient of fucked up assumptions and long-suffering sighs. I’ve had my consent or lack thereof ignored. I’ve been lied to by “medical professionals” more times than I can count.

It’s fucking unbearable. You can feel it chipping away at the most basic foundations of your humanity.

THESE ARE NOT ISOLATED INCIDENTS.

Yes, that is what finally prompted me to write about this stuff. Because it just does not get discussed enough. Partly because most people do not want to believe that this is a serious problem for some other people who are not just like them. (Or because they just don’t care; it’s hard to tell how much of what factor, at times. :-|)

The post that was in reply to: What my roommates have taught me this hospital stay.

I once attended a talk by a nurse specializing in pain. About the under-treatment of pain in people with developmental disabilities. She gave us handouts that stressed that for people with communication problems, the important thing is to have people around who know how our specific bodies respond to pain. That way they can alert the nurses when pain is out of control…

And I keep thinking I must be really tough. Because I’ve made it through all this with far less medical help than all these people passing through. I leaned hard on my friends, and on the knowledge that so many people all over the place were pushing for me. And I couldn’t be more grateful. But damn. Nobody should have to go through this. Nobody.

And disabled people are more vulnerable. Aside from the conditions they were getting surgery for, my roommates were nondisabled. Not cognitively disabled. Not developmentally disabled. Not communication impaired. Not wheelchair users. Not on feeding tubes. All of them white, of course, since nondisabled people of color can be treated as bad as white disabled people like me, let alone disabled people of color. Not lesser beings who the medical world would just as soon get rid of…

And this isn’t about jealousy. This is about my roommates getting what everyone should get and me getting what nobody should get. It’s frustrating.

I shouldn’t have to be this tough. I should have had what everyone gets. When I ask for what everyone else gets, I get told I’m holding up care that other patients need. When other patients get what everyone else gets and they worry about whether other patients are getting enough care, it’s “of course, stop worrying”.

Men dominating conversations is seen as normal. When women get exactly equal time with men, everyone perceives the women as taking up 90% of the time.

Nondisabled patients getting all the care is normal. When I ask for even a fraction of what other patients get, I’m accused of being a selfish waste of resources who is wanting so much more than other patients get.

See the similarities there? It’s not that I want any more than anyone gets. It’s that when I get even a little more than the nothing they want to give me, they treat me like I take up all their time. I’m a nuisance. I’m selfish and greedy for wanting the bare minimum. But it’s all an illusion. I’m really getting next to nothing and having to rely on my own resources to battle pain so strong it tries to destroy my mind. And it’s always like this. If I told you half of my hospital stories… they all run like this and my regular doctors know it but they can’t protect me.

Something is terribly wrong here and me, it ain’t.

The inadequate concern about, and treatment of, pain is just the most recent and pressing problem here.

First, years of ignored and misdiagnosed (multiple) medical problems lead to a dangerous situation where someone keeps getting aspiration pneumonia. That sounds pretty serious, right? Then this happened:

The weirdness of being told that the death alternative is the one I should consider. I’m including a long quote here, because WTF?!

What became really disturbing was the gastroenterologist’s attitude towards my treatment. He kept trying to find ways to persuade me that I didn’t want a feeding tube. He said I had to consider alternative options. My DPA pointed out that the current alternative option was death from pneumonia. The gastroenterologist confirmed that he knew that was the only current alternative. Then he went back to what a big scary decision a feeding tube was, and other things intended to dissuade me from what’s known both with gastroparesis and other neurological problems causing these problems, to be commonly the next course of action.I simply can’t continue aspirating like this, getting pneumonia this often is a very bad thing. I’ve had a number of close enough calls I’m not interested in getting any closer.

But apparently this guy, even after “the alternative is death” was spelled out, not only agreed to this, but still kept pushing “the alternative”. And he was not the only person who appeared to know my life was in danger yet kept asking me to reconsider getting the tube, they’ve tried all kinds of ways.

I wanted to make especial note of this because its not a case of someone making a mistake. The alternative was spelled out, he knew what it was, yet he continued to push it and try to keep me from deciding on a feeding tube. He only gave in when it was clear I had decided I wanted to live awhile longer. There’s been a lot of grudgingness.

Not everyone here has been that awful. Some of them don’t seem to see their biases. Some of them seem to be really flagrant. Some of them tell me it’s good I stick up for myself every step of the way because only I know my own body. But there’s been a disturbing parade of people trying to convince me not to do this.

They tell me it’s hard to live on a feeding tube. It’s hard to live with eating so bad you feel like throwing up when you drink three Ensures a day, too, and it’s impossible to live indefinitely with getting pneumonia over and over.

They give me crap about what’s required for the procedure and whether I’ll be able to take it.

They try to tell me that it may not work. Every procedure may not work. This is the least invasive option in this situation. Cutting my stomach out could be done too but that’s far more invasive. Getting a G-J tube is totally reversible if it doesn’t work and it doesn’t prevent me from eating food if I want.

They play up the risks. There are risks. I’ve considered them. I’ve decided they’re less risky than aspirating every week or two. But overall in this day and age the risks are minimal compared to the potential benefits.

Luckily I have a DPA who is well versed in all of the medical terminology and can argue for me when I’m lost, or for that matter just too weak and confused and vulnerable to handle these conversations. Where every single time I have to push forward against this invisible force that seems to want me killed, and say “Yes I want to live, give me the feeding tube” no matter what I’ve been told just beforehand.

And luckily some doctors have been on the side of the feeding tube since the day I walked into the ER with pneumonia and a really ugly CT scan of my lungs from a few days prior.

But there are those who aren’t. And there are those who actually seem to, given explicitly the option of me dying, want me to choose that option. And that is scary. And I think how many other people in the hospital are getting treated like this.

Other evidence of disability discrimination is simply what happened when I was admitted. They at first refused to admit me without a 24/7 escort from the local developmental disability services agency. That basically meant they were willing to admit on the basis of disability rather than on the basis of who is sick and needs treatment. There are very strange things going on here.

They must be getting calls though because they’ve become a lot more conciliatory in the past few hours. They’ve said I’m definitely getting the tube now, the same guy who tried to talk me out of it before. I don’t understand this but I think they may understand people are watching their every move. What I worry about are the ppl here without those connections to call on.

And, related to that: “Are you at peace with your decision?” (bolding added)

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.

So, she did finally manage to get the tube. With inadequate anesthesia for the surgery, lying about what type of anesthetic was in fact going to be used, inadequate concern for the fact that it was still obviously hurting like hell during the procedure, and inadequate pain control afterward. Taking out resentments on the patient? Hmm…

After that, they honest-to-g00dness tried to throw her out of the hospital, and into a nursing home:

Her pain is not under control (and controlling it involves a complex process of titrating nausea and pain meds, something that requires a doctor on call (i.e., a hospital). They want to dump her in a nursing home (because she can’t transfer yet because of the out of control pain). Of course, nursing homes are notoriously unable to manage pain, and even if they somehow morphed into good places, they still lack the doctors needed to control her pain.

Of course the pain exists because they ignored her directions regarding anesthesia and relied on light sedation + lidocaine. Had they bothered to tell her what they were really going to do (or followed the directions she gave them), she would have informed them that she doesn’t respond very well to lidocaine. The hospital, in essence, performed an ostomy without anesthesia, and now wants to dump the aftermath of their malpractice onto a nursing home.

My response: Hell, no

Update here (since I’m stuck till 3:30 waiting for the wheelchair cab to get to FAHC): We will be filing a discharge appeal with Medicare, and I’ve gotten Protection and Advocacy involved again on this (they’re talking with their lawyers). I’ve also demanded a new attending physician.

BTW, the P&A person had witnessed the anesthesia discussion (that they then ignored altogether), which means legally FAHC is screwed. And I will be happy to help turn the damned screwdriver.

Luckily, that got stopped. (See also a recent post from another blogger: Why Are Young Adults Dying In Nursing Homes?)

But, then there was the hard pushing to do stuff with little or no regard for actual abilities or pain levels, even before the horrible PT person showed up. I’ve had two knee surgeries (both ACL reconstructions) and a seriously ripped-up ankle, and yeah. This is way too common. I’m not going to use a quote here, because I would have to quote the whole thing: Why are so many physical therapists so scary? 

OK, I do have to quote this:

And I’ve seen PTs do this to other patients. Especially disabled patients in vulnerable psychological states. They don’t understand the difference between pushing to achieve, and pushing that breaks people in body and spirit. They have no comprehension or compassion for what they do to people. They see no individual differences.

I’ve seen really good PTs. But when they are bad, they are bad like this. They are bad in ways that make me struggle so hard not to cry in front of them. I have watched hospital roommates break down crying from the utter degradation and be forced to continue anyway and showered with false praise after they have done what the PT wanted…

And they believe this. They believe disabled people are lazy and manipulative and won’t achieve anything without being pushed to the limit regardless of the costs. This is not acceptable on so many levels. She could have easily gotten me so tired I couldn’t breathe on my own — it happens — but she didn’t think of that or any other bad consequence. She thought only of the image of me in her head.

She could have helped me. She clearly knew skills I need to learn. But she didn’t. She hurt me. This isn’t ok.

Even if you’re not seen as disabled beyond a joint injury, this is too frequently a problem. I’ve run into this approach too many times, and actually done myself further injuries with the joint hypermobility in particular–just to try to get them to leave me alone when I was in no shape to deal with that kind of behavior. Part of it is no doubt bad training, but I do have to wonder.

But, yeah, in the meantime this friend has been dealing with lousy approaches to pain control, while watching the roommates who have come and gone get totally different treatment and have their problems taken more seriously.

After their surgeries, people doted on them. Even when their pain was less than mine had been, the nurses were coming in practically every five minutes to check up on them and doing every possible thing from medications to positioning, to help with their pain. Even the way they talk to them is gentle and friendly. And when they had visitors they were never thrown out, regardless of loudness. Once they even explained to a visitor that soon they were doing away with visiting hours so they wouldn’t bother throwing him out.

I still remember what my pain was like after my surgery. Worse than many more invasive surgeries I’ve had. And not controlled as well. Interacting with my existing neuropathies and other chronic pain to become even worse…

Today I tried hard not to cry because when my roommate complained of unbearable pain they treated it as an emergency and sent in doctors specializing in pain and anesthesia to make her better. Her pain, like mine, like my last roommate, is made worse by one or more tubes rubbing her incisions. I’m almost crying because of how they treated me…

It is hard to realize again and again the hate. The annoyance that you exist and need and want the same help everyone else seems to take for granted. They never wanted me here even after they saw my life was in danger, they didn’t want to save my life, and they sure as hell didn’t want to make me comfortable. A few individuals were great but the system was horrible.

It’s hard to just sit there and know that to them you don’t matter…

And this isn’t about jealousy. This is about my roommates getting what everyone should get and me getting what nobody should get. It’s frustrating.

(Bolding added.) That did get me crying, because nobody should be put through that. Everybody should matter. And she totally nails it.

A response from chavisory, which also hit a little too close to home:

Elements of this are so true about so many things in my life, including but not limited to medical care and pain control.

And I wasn’t diagnosed with an ASD until well into adulthood, or ever identified explicitly as such by medical personnel or teachers or employers, but so much of this is true in smaller, pervasive and subtle ways that I have to wonder what is it about me, that isn’t having a label or being overtly presented as disabled or unworthy, that just telegraphs to these people “acceptable to treat this way.”  Like they can just see it, even if they aren’t told to see it.

This is such a widespread problem that it can get totally overwhelming. I probably missed some parts of this particular case, trying to pull the info together, but this is more than enough awfulness to illustrate the point.

I’ve written a bit before about some of the disability-related problems I’ve had in medical settings (including very rarely getting anything like adequate pain relief for blatantly painful things). And I have reason to be concerned that if I disclose that I’m on the autistic spectrum, to try to get some accessibility needs taken into account, that might lead to worse treatment out of some dehumanizing assumptions about what that means. But, I don’t want to go into that right now, nor some of the horrible crap family members have run into which make me even more averse to trying to get medical care when I need it.

The worst medical experiences I’ve personally experienced or witnessed almost look good, compared to this extended medical clusterfuck. And this is being done to someone who has backup, with a lower chance of the bad treatment just quietly killing her and getting brushed under the rug. Like in the “how could this have ever happened?!” public scandals, yeah. This shit is all too common, and sometimes I have to wonder if the neglect and abuse are further intended to put people off seeking more treatment in the first place.

I’ve been “lucky” enough that nobody has decided that their assessment of my abilities, “quality of life”, or basic human worth were low enough that I should just go ahead and die. (People have been more prone to lying, coercion, and occasionally outright force toward procedures and treatments I said I didn’t want. Some of the same rotten attitudes around differential respect driving it, however.) Many people are not so “lucky”. And getting treated with basic respect and dignity–not to mention the assumption that you deserve help to stay alive “even if” you’re elderly and/or disabled–should never be a matter of luck. Never.

My roommate is talking about what a great hospital this is.

But every disabled person I know who’s been here has horror stories. Especially if we have had repeated or long stays. Weird. Reminds me of mental institutions where the people on three day holds for depression thought they were great and the rest of us had terrible experiences. Not that there aren’t good things about this place but its far from safe if you don’t have just the right people taking care of you and aren’t someone they value.

Shame we don’t value more people, as a society.

_____________

* Though, apparently, people on the autistic spectrum are not covered under the newer recommendations for better medical care; this poses a wider problem with getting needed help and benefits in the UK, since it’s officially neither fish nor fowl. Not a mental health problem, nor a learning disability.