Ableism in Britain’s NHS – Ian Shaw Put in Palliative Care with a Treatable Cancer

Ian Shaw, a 35-year-old disabled British male, is recovering nicely from testicular cancer. He’s fortunate; if Dr. Justin Wilson hadn’t stepped into his case, ableism within Britain’s National Health System might have prevented Shaw from getting chemotherapy.

"Ableism" written in white block letters on a brick wall. Keyword: Ian Shaw

Image Description: “Ableism” written in white block letters on a brick wall.

Content Note: Ableism, cancer, child death, euthanasia, medical model of disability, organ donation, parent killing child with disability

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Ian Shaw is autistic, intellectually disabled, and doesn’t communicate using words. He has epilepsy. He’s spent most of the last decade in secure units because he has behaviours that are difficult to manage, but his parents fought to get him moved into a community residential setting, and eventually got him a placement.

A few months after moving, he was diagnosed with advanced testicular cancer. Shaw’s family blame the staff at his previous placement that the cancer was not detected sooner – he’d apparently had a testicular swelling treated the year before, but no follow-up had been done.

Ian Shaw received his cancer diagnosis in December 2016. By February 2017, the tumor had grown so large that it was affecting Shaw’s spine, making him unable to walk. Doctors at Luton and Dunstable hospital said that, given the rapid downturn in his condition, they wouldn’t be able to start the planned chemotherapy treatments, and declared his condition terminal. Shaw went to live with his family and receive palliative care in their home.

Enter Dr. Wilson, a psychiatrist who has studied cancer treatment in intellectually disabled people.

Ableism in Ian Shaw’s Treatment

Knowing that testicular cancer is very treatable with a high rate of success, the story puzzled  Wilson.  Statistics support his position:

“For men with cancer that has spread to the lymph nodes in the back of the abdomen, called the retroperitoneal lymph nodes, the survival rate is about 96%. But, this depends on the size of the lymph nodes with cancer. For men with cancer that has spread outside the testicles to areas beyond the retroperitoneal lymph nodes, the survival rate is 73%. About 11% of testicular cancer is diagnosed at this stage.”

Given that Ian Shaw’s tumor was affecting his spine, even if we assume that the survival rate was even 60%, why the assumption that there was no point in trying a course of chemotherapy for a cancer that statistics show does respond readily to it?

Dr. Wilson’s theory was that there was some ableism involved, as he told the BBC:

“My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread,”

He was also concerned that the challenges of administering chemotherapy to someone with Ian Shaw’s behavioural challenges were making the hospital reluctant to offer treatment. He requested to be put in touch in with the family, who got a second opinion about treatment for Shaw after talking with him.

The University Hospital Trust for Luton and Dunstable Hospital said that Ian Shaw’s disabilities weren’t a factor in the decision to put him on palliative care, but the proof seems to be in the pudding on this one:

  • Shaw is receiving chemotherapy at the Royal Marsden Hospital – he is put under anesthetic while it happens. Not a perfect solution, but it allows it to happen
  • The tumor is shrinking  – Shaw now uses a wheelchair
  • A young man who had been told he was going to die within months has hope

If Ian Shaw was indeed refused treatment initially because of his disabilities, it was because of this medical model of disabilities that tries to tell us that “quality of life”,”quality of contribution to family/community/country”, and “quality of relationships” need to fall within narrowly-defined, highly subjective parameters in order to be “valid”. It’s a way of looking at people, community, relationships, and the world that it seems like we should have grown out of by now, quite frankly.

The Importance of Confronting Ableism

It’s not just Britain. We know that disability affects whether or not someone gets an organ donated to them in America, and whether people are granted permanent residency in Canada. We know that it was also in Britain where the courts gave a hospital permission to kill Nancy Fitzmaurice, who didn’t have a terminal illness and who was breathing on her own with no life support; she was twelve years old.

Any person could become disabled at any time. It’s important for all disabled people to know that these ableist attitudes exist within our systems, so that they can be prepared to fight them if they have to, especially  when they’re dealing with agents of systems (medical system, legal system, judicial system, etc.)

Ableism kills. We must never become complacent.

Read More about Ian Shaw’s Story

Lily Parra Needs a New Heart

Here’s a familiar story. Four-month-old Lily Parra won’t be put on the transplant list for the heart she needs because of disability. Long-time readers may remember that I’ve written about two similar stories: Children’s Hospital of Philedelphia’s refusal (eventually reversed, after a long fight) to perform Amelia Rivera’s kidney transplant because of her intellectual disability, and the Hospital of the University of Pennsylvania’s refusal to put Paul Corby on the transplant list for a heart because of concerns stemming from him being autistic.

Content Note: Ableism, Child Illness, Organ Transplant, Medical Model of Disability

Dr's prescription pad with "Heart Transplant" written on it. Keyword: Lily Parra

Image Description: Dr’s prescription pad with “Heart Transplant” written on it

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Stephanie Parra was 32 weeks pregnant when doctors informed her about Lily Parra’s heart defect and how it meant that she probably wouldn’t live long past birth. They suggested that Stephanie have an abortion, but she refused.  Lily Parra was born on December 8th, 2015 and went home a month later, after surgery to have 2 stents put in her heart. Her parents took her back to the hospital a week later because of concerns that she was having a seizure. Doctors quickly saw that she was in respiratory distress, and  determined that she’d picked up a bacterial infection from being in the NICU that had settled in her lungs. After an echocardiogram also showed that Lily had mitral valve regurgitation in addition to her other heart problems, doctors determined that she needed to be put on the transplant list.

Read more about Lily Parra’s health problems

However, an MRI showed that Lily Parra had water on the brain, causing a condition called diffuse cerebral dysfunction that might result in developmental disability. Stephanie Parra says that she was told by doctors generally that “because of this diagnosis, her daughter would have a poor quality of life and therefore, they would not list her for a heart transplant” and by Dr. Shamel Abd-Allah specifically that “I don’t have a bag full of hearts that I can give to everybody and I’m not going to waste a heart on a kid who might have disabilities.

A letter from Loma Linda University Children’s Hospital posted on the online petition that Stephanie Parra has started states Lilly Parra isn’t being considered for a transplant because chromosomal abnormalities that will affect longevity. Stephanie says that she only heard about this when she heard doctors and nurses in the PICU discussing how Lily Parra was missing genetic material on chromosome 2p21. Individuals with this deletion are usually developmentally disabled.

I Get It

Donated organs are in short supply and tough decisions need to be made about how they’re allocated. Doctors should be reasonably assured that recipients are committed to caring for themselves and the organ that they’ve received – taking the anti-rejection medications, following up with doctors, and staying in good health to the greatest extent possible.

I get bringing up some disabilities as a consideration when evaluating people for transplant. If I needed a transplant, I would get it if doctors asked me questions like:

When you’re depressed –

  • Do you realize that you’re depressed?
  • How well do you take care of yourself?
  • Do you ever stop taking your medications?
  • Do you have a plan that you put in place to help you get back to baseline again?
  • How likely are you to put that plan in place by yourself? What kind of help do you need to get it going?
  • How long does it take you to get it going?

If I indicate that every couple of years I get so depressed that it’s hard for me to get out of bed and to work and my appointments, and that I stop taking all my medications, I imagine that this would be concern for a transplant team.

I think is fair it’s that disabilities with the potential to affect how well a transplant recipient  adheres to the regimen that will endure the success of the transplant be a concern in the evaluation for the recipient’s suitability for a transplant.

However…

Disability on its own shouldn’t dictate whether a person is excluded from transplant (especially very young children). Lily Parra may very well end up developmentally disabled. The reality is that we can’t know the extent of her disability at this point, and that, just as it would be fairly easy for me to put a plan in place with support from others that ensured I was taking my anti-rejection meds and seeing my doctors even when depressed, Lily Parra can have supports put in place around her as well, if needed, to ensure that she cares for herself as an organ recipient.

I worked with an intellectually disabled woman who never forgot to take her meds. She’d tell me, “I need to take my meds now.”

It’s not fair to decide when a baby is four months old that he or she will not be able to live with the demands of being an organ recipient, even if developmental disability is involved.

Lily Parra – Deeper Issues

Doctors want people who have the best chance of high “quality of life” to receive donated organs, but their conception of “quality of life” is often narrow and ableist. If doctors can’t imagine a recipient getting a typical education and ultimately contributing to society through paid work, family, community roles, etc., then they assume that donated organs would be better off with individuals who can do these things in the stereotypical ways that they envision.

This bias toward the stereotypical “normal life” (and emphasis on how potentially “functional” in society a person is as a criteria for being being an organ recipient), is highly ableist. It’s perfectly possible to have high quality of life while having significant disabilities, and almost certain that quality of life would be even higher without the physical and attitudinal barriers blocking disabled peoples’ full access to society. The view that disability is something that’s in the individual and needs to be cured is so prominent within the medical community that it’s actually called the medical model of disability, and its refusal to acknowledge that disability is a social creation (the social model of disability) doesn’t leave any room for the idea biology doesn’t predict destiny.

Again, especially when a potential organ recipient is very young, it’s terribly unfair to totally base a decision about whether or not someone gets organ on, “Disability always comes with low quality of life.” We should not be making decisions transplants based on whether we think a recipient could or couldn’t reach the quality of life that we’d consider acceptable because:

  1. What doctors consider a good quality of life may not be what the recipient considers a good quality of life.
  2. An individual generally should not be able to dictate what a good quality of life is for someone else.
  3. As much as I respect doctors and clinicians and their abilities, they are frequently wrong about what disabled people end up being able to do. My doctor at my first stroke rehab centre didn’t think that I’d ever really be able to move my left arm again. I have considerable movement in my left arm and am still getting return in my left hand after 15 years.

I Also Realize…

…that we don’t have the full story from Loma Linda University Children’s Hospital. Garrett Caldwell, Executive Director for Public Affairs at Loma Linda, wrote a letter in response to Special Olympics Chairman Timothy Shriver’s op-ed about Lily Parra in the Washington Post, but it was very general (as responses usually are). There are aspects of the story that don’t make sense – like why the Parras were not told about the 2p21 deletion, and why one doctor told them that Lily Parra was in kidney failure and another then said that she wasn’t. It’s totally understandable that parents under extreme stress might misunderstand information or might not remember something that was said to them. There may be other factors behind the decision to remove Lily Parra from the transplant list.

However, there’s enough consistency in Stephanie Parra’s story across media accounts to make me believe that it was said that Lily Parry would not receive the transplant because of a developmental disability or the potential for one, and this is not fair. It’s ableism that needs to be called out and that Loma Linda University Children’s Hospital needs to respond to.

I didn’t like most of Shriver’s op-ed, to be honest – I thought that he relied too much on emotion and not enough on fact to make his argument. But I do think he nailed it with this:

“This is an infuriatingly familiar story, and people with intellectual disabilities know it well. Too many medical professionals see them only in terms of “function” or “dysfunction.” The vast diversity of gifts and challenges that make up each of us are reduced to a binary conclusion. You’re either able or disabled, valuable or not. And when you’re not, you’re hopeless.”

Please sign Stephanie Parra’s petition to have the Transplant Board at Loma Linda University Children’s Hospital reconsider putting Lily Parra back on the transplant list.

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