A life-and-death decision

Try to imagine this, everyone (including the women). You are 34 years old and you have just been diagnosed with testicular cancer. Your whole family is shocked. You are in the prime of your life, the decades should be stretching ahead of you. Perhaps it could have been picked up a year ago, when you went to the doctor with swollen testicles, which were not really investigated properly. Neither were your complaints of pain. But now here you are, with a cancer that has spread. What to do?

Chances are that your doctors will recommend chemotherapy. It’s not to be taken lightly, going through chemotherapy is usually very tough indeed, and good outcomes are never guaranteed. You are feeling weak and rotten, so perhaps you decide that you really don’t want any treatment. But my guess is that you would. You would try.

Wouldn’t you?

I cannot think of many men in the prime of their lives who would not be offered this option by their doctors, even if the chances of success were slim. And the thing is, testicular cancer (even cancer that has spread) is one of the most treatable cancers, so the chances of success are not that slim.

So why was Ian Shaw told, soon after his cancer diagnosis in 2016, that palliative care was the best option? Why was he sent home to die? Why did the doctors not even discuss the (admittedly very challenging) option of chemotherapy, but instead told the family that it would be too much, the cancer had gone too far?

Ian has severe learning disabilities, autism and epilepsy. It is difficult to escape the suspicion that this has somehow influenced the doctors’ decision, although the hospital denies it, stating that “Mr Shaw‘s learning difficulties were not a factor in the decision to move to a palliative care pathway.”

I remember watching this story on the BBC news in July. There he was, this very weak young man, bedbound, with his tearful parents by his side. He was expected to die within months. I remember thinking, “Oh no, not again. Another person with learning disabilities falling through the net. This doesn’t seem right.”

I didn’t do anything. Perhaps I didn’t know the full story, I thought. Perhaps the doctors knew something I didn’t.

Fortunately, Dr Justin Wilson, who also watched the BBC news report, did take action. He is a leading psychiatrist in learning disabilities and knows a thing or two about cancer. He got in touch with the family and advised them to have a second opinion, so they took him to the Royal Marsden Hospital. Last night, the BBC news showed an update on the situation. There he was, this strong young man, five months after that initial report, responding well to chemotherapy. Ian hadn’t been expected to make Christmas, but now he is sitting in his wheelchair looking rather feisty.

Dr Wilson said, “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 added, “I’m also clearly aware that providing cancer treatment for someone with the problems that Ian has is a real challenge. It is really difficult to give the best possible treatment to somebody in that situation, but my view is those challenges can be overcome.”

I couldn’t have put it any better myself.

I’m sure doctors and nurses all want the best for their patients. Nobody will have looked at Ian and thought, consciously, “What’s the point of this man’s life? Letting him slip away is the kindest thing, surely.”

But there are undoubtedly unconscious biases, putting people with learning disabilities at risk. Our study of patient safety issues, which involved investigations in six NHS hospitals, concluded:

“The most common safety issues were delays and omissions of care, in particular delays and omissions of basic nursing care (for example, unmet nutrition needs) and delays and omissions of medical treatment (for example, treatment not given because of perceived inability to cope with or consent to treatment or because of staff assumptions about the patient’s quality of life).” (p. xvi, Scientific Summary)

Similarly, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) concluded that people with learning disabilities are at risk of under-treatment, and recommended that people should not be put on a palliative care pathway without sufficient investigations or because of assumptions about their quality of life.

I am a great fan of palliative care. Recognising that someone is terminally ill is important, so that proper end of life support can be given. Sometimes, a person’s difficulties in coping with something as horrible as cancer treatments really are “too much”. But weighing up the pros and cons is not something doctors should do on their own. It is an effort that needs a multidisciplinary team and must involve the family and carers – especially if the patient cannot speak for himself. The difficulties and extra effort involved in giving treatment must be considered in the light of possible outcomes.

Nobody says it will be easy. But surely the possibility of living many more years rather than dying before Christmas is an outcome worth pulling out the stops for?

For Ian Shaw, this has meant putting him under an anaesthetic for a short time whilst he is given his chemotherapy. Now that is what I call an excellent example of making Reasonable Adjustments. Ian’s access to cancer treatment should not depend on the BBC news picking up his story, but thank goodness.

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