Saturday, January 10, 2009

"Death by Indifference:" Medically Neglectiing People with Developmental Disabilities to Death in the UK

Regular SHSers will recall the horrific case of Martin Ryan, an adult with Down syndrome who, after a stroke left him unable to talk, was allowed to starve to death over 26 days in a UK hospital. I have done some Googling, and found some more on the story. Martin's and other deaths came to light because of a campaign by MENCAP, an NGO, to bring to light abuses in the medical context against people with developmental disabilities.

There is apparently something of a pattern in this and other appalling deaths of people with developmental disabilities. From the Telegraph coverage:

The six cases were raised by Mencap in a report entitled Death By Indifference. A spokesman for the charity said last night: "These people were completely and unacceptably failed by the treatment they received. " It was a catalogue of disasters and poor treatment of very vulnerable people who deserved so much more.
Still, the coverage, based on what I can see from the USA, seems very muted, particularly given the horrendous nature of Martin's death and the other problems reported. When I Goggled it, there were only nine stories listed. Perhaps it is because these deaths didn't just happen--Martin died in 2005. But think of that! It has been nearly 4 years and nothing has been done about his plight. That is why I suspect there is more at work here.

Let's play a mind game about the same death, but a different patient. Imagine, if you will, that Martin was gay, or a Muslim, or a person of color, and that his starvation seemed part of a pattern of indifference and neglect that had been inflicted on other similarly situated patients: Wouldn't the media have been in a full-fledged feeding frenzy from the moment the news came out demanding that heads roll and cases be prosecuted criminally? Why have we not seen that same kind of intensity with regard to these deaths? Yes, there is going to be a government report, but I am talking about the intensity of the thing.

I suspect it is that people like Martin aren't valued equally by many in society and among journalists. And indeed, given the indifference to the high eugenic abortion rate, the respect in the media for people like Peter Singer who asserts it is okay for parents to kill babies born with Down (can you imagine the reaction if he said the same thing about murdering a baby based on race?), there is a (perhaps unconscious) mindset afoot that people like Martin should never be born.

Here's another horror story from the MENCAP report:
Emma was admitted to hospital for tests – she was upset and in pain. The hospital found her behaviour difficult to manage and sent her home without any help to control her pain. When Emma and her mum went back to the hospital for the results they were told Emma had cancer.

There was a 50:50 chance that she would survive if she was treated, but the doctors decided not to treat her. They said she couldn't consent to treatment. Again Emma was sent home with no way to help with her pain.

A week later Emma wasn't eating or drinking, so her mum took her back to the hospital and tried to make the doctors treat her daughter. Still having to watch her daughter suffer from the cancer, Emma's mum went to the High court to force the doctors to treat her daughter, but by the time the order came through, the cancer had progressed too far. Emma was admitted to a palliative care hospice where she died a month later.
Awful. Just awful. There's another way to spell indifference: B.I.G.O.T.R.Y.

Not being in the UK, perhaps I am missing the outrage that is being expressed there. But based on what I can tell from this side of the Pond, I am not seeing it. I would be interested to hear from UK SHSers about their perceptions of the matter.

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13 Comments:

At January 10, 2009 , Blogger Unknown said...

Sounds no different from and no worse than what I've seen go on on this side of the pond, and it's all really, really bad.

 
At January 10, 2009 , Blogger Lydia McGrew said...

I'm usually the first one to jump on media double standards, but I'm not sure there _would_ have been a feeding frenzy if Martin was a member of a more "PC" group. And the reason I say that is that I sense a really odd attitude towards feeding tubes throughout Western culture. I would be willing to bet that if you told a lot of people that Martin wasn't given a feeding tube and thus starved to death over weeks, they'd start blah-blahing at you about "extraordinary means," and "but where do you draw the line" and "how much different is that really from a ventilator," and "two hundred years ago he would have starved, so it's really technological," and on and on. We've become pretty callous as a culture to starving people to death if they require a feeding tube. They _say_ that it matters if the person left evidence that he would have wanted it, or if the family wanted it, but of course in this case there was neither of those. But I don't really think that's what makes the difference to people's attitude. It's really the need for tube feeding in and of itself that makes people switch off the moral indignation.

Now, I'd been under the impression that the UK might be slightly better about this than we are in the U.S., that even legally they still defined nutrition and hydration as basic care rather than treatment. But after this case, I'm going to have to re-evaluate. Or maybe Martin's case is a sign of a shift going on over there.

 
At January 10, 2009 , Blogger Lydia McGrew said...

Sorry, that was unclear--I mean that people say that what makes a difference is if the person left evidence that he wouldn't want a feeding tube, that he would want to starve to death.

 
At January 10, 2009 , Blogger Nancy Reyes said...

Years ago, when we were working on emptying our state institutions, one of our moderately retarded (autistic) girls was brought in wrapped in a fishing net restraint.

It seems she started screaming and head banging, and was taken to the ER and then after two days of shots trying to sedate her, they sent her back to us (she had gone to a group home six months before).

Turns out she had an ear infection...but no one recognized her behavior was from pain...

Took us six months to get her behavior better to send her back into the group home.

But two things: One, pain medicine may have paradoxical reactions in the retarded (we used a lot of Toradol, but that too has problems of GI Bleed).

Two: Often retarded people are poor health...one of our girls almost died from chemo for Hodgkin's disease so her family asked us to stop it...from years of bad health, like the elderly, her body got side effects from normal doses, and the smaller doses wouldn't have worked...

there is a difference between refusing treatment that has a bad risk/benefit ratio and not giving treatment because you think they are useless eaters...which is alas becoming too common...

 
At January 11, 2009 , Blogger dparmann said...

For Lydia - A feeding tube is now considered part of "extraodinary means." There has been situations, in my own family, situations in which my input was overidden by those with more "legal" power, in which the feeding tube was removed, and members of my family were allowed to starve to death. This has taken place in hospitals, by the doctor's recommendation. I have family members who consider starvation, to be dying from natual causes!
You are correct Lydia when you sense an odd attitude towards feeding tubes.

 
At January 11, 2009 , Blogger Unknown said...

dparmann: I posted on that subject last night but the post didn't register. My heart goes out to you and I know what you've been through. Yes, Lydia, you are correct. It seems to be in the boilerplate on "standard" (canned) "living wills" and the attitude is indeed odd. What can go in on in a hospital is beyond odd.

 
At January 11, 2009 , Blogger Lydia McGrew said...

Right, we all saw that when Terri Schiavo was dehydrated to death. So one question is, is it different (at all? somewhat?) in the UK? Better? Worse? How do attitudes towards feeding tubes in the UK relate to what happened to Martin Ryan?

 
At January 11, 2009 , Blogger Foxfier said...

As a layman-- abet one who has family members who were lost to us, though technically alive-- I still can't understand how giving someone food and water is "extraordinary".

Any random person who shows up hungry, I will try to feed-- my faith is part of it, sure, but basic decency is most of it.

Someone's hungry, I'll try to feed them. Someone's thirsty, I'll get them water. Someone's car is stuck, I'll try to get them aid-- be it taking kitty litter to put under the tires, or loaning a shovel.

 
At January 12, 2009 , Blogger SAFEpres said...

This comment has been removed by the author.

 
At January 12, 2009 , Blogger SAFEpres said...

My God. May God have mercy on those poor people and give their souls rest. Sometimes I feel like that's all that's left to say, because it seems like no matter how loudly the disabled community screams, no one powerful enough to stop this can, or is willing, to hear us.

 
At January 12, 2009 , Blogger SAFEpres said...

You know, I am reminded of the fact that Thoureau's beloved brother died from lockjaw, which prevented him from opening his mouth to eat. Thoreau described the horror of watching his brother die slowly from dehydration and starvation, which played a significant role in his decision to isolate himself at Walden Pond. Think about how much Thoreau's brother would have appreciated a feeding tube back then-yet now, when we have them, we are condemmning people to the same kinds of deaths because they are considered "extraordinary."

 
At January 12, 2009 , Blogger SAFEpres said...

Foxfier-I agree with you. When I see a hungry person on the street, i try to feed them. If I found a lost animal, I would take it to the vet. I would only expect that if a hospital admitted a disabled person, doctors would at least feed him or her.

It is sobering to consider what could and does happen if disabled people are regarded as being on the same playing field as animals. On Animal Planet, one is able to see how quickly animal rescuers euthanize troubled or sick animals because of the time and resources needed to care for them-think if that mentality where extended to orphanages and state institutions on an even larger scale. Chilling.

 
At January 12, 2009 , Blogger Unknown said...

SAFEpres: I'm not sure it has to do with whether or not humans or non-human animals are on the same playing field, and I'd like to see both treated better than they are with what we've got going on now. I think the criteria are, wrongly, resources (and we should be able to do that) and, even worse, the helplessness and vulnerability of those who need he help (which is why a mindset that is not callous to them, no matter what their species, is crucial). Considering what goes on in hospitals already, where resources such as feeding tubes are readily available and abundant, I share your concern re orphanages and state institutions.

 

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