A time for caution

Yesterday afternoon, Sir Brian Langstaff published his report on the findings of the Infected Blood Inquiry. I understand that it is 2,700 pages long. I haven’t read it, but have read parts of the summary, and have read and listened to some of the news stories about the scandal.

In brief: in the 1970s and 1980s in the UK tens of thousands of patients were given blood products or blood transfusions that were infected with the HIV and/or Hepatitis C viruses. “The most accurate estimate is that more than 3,000 deaths are attributable to infected blood, blood products and tissue” (Report summary, p2).

But this wasn’t just a tragic accident.

It is clear that even once medical professionals knew they were using risky blood products, they continued to administer them, often in increasing volumes, thus heightening the risks to patients. They chose these risky treatments over available safer ones, and failed to properly outline the risks and alternatives to patients “thus treating them without their informed consent” (p4). (Echoes of the findings of the Cass Review into the widespread use of puberty blockers and hormone treatments in children questioning their gender identity.)

And then, once the effects of these treatments became apparent, both the NHS and successive Governments covered the evidence up and denied that there was a problem.

Victims and their families have been campaigning for decades for the truth to come out and for some compensation to be made – though of course nothing can compensate for a life destroyed.

Today, those affected will learn how much the Government plans to pay out in compensation.

Death on request

Also today, in Jersey, politicians will begin to debate the details of a proposed ‘assisted dying service’. The Manx parliament is also voting on the introduction of such a provision, and Liam McArthur’s Bill in Scotland was introduced in March and will likely be debated this autumn.

What does this have to do with infected blood?

Simply that some of the key concerns of opponents of assisted suicide and euthanasia laws are:

– that there can never be sufficient safeguards to ensure that the patient requesting help to die is not being coerced;

– that investment into new treatments and top-quality palliation provision will dry up when this cheaper, quicker option is available;

– and that the eligibility criteria (usually initially limited to adults with a terminal diagnosis, experiencing great suffering, with only 6 months or a year to live) will quickly be broadened to include many more categories of people (children, those suffering solely from mental illness, those without a terminal diagnosis but who find their life not worth living…).

Assurances that doctors and the government will ensure that none of these dangers will be realised, and that assisted suicide will only ever be available for the very tiny number of people whose suffering can’t be relieved, ring rather hollow in a week when we learn of the cruelty and negligence of so many of the medical profession, and the complicity of those who ought to hold them to account.

If we couldn’t trust them to choose the best available treatment options then, and if they could knowingly put tens of thousands of their patients at risk of contracting deadly diseases, how can we trust them to have the best interests of the terminally ill at heart?

In addition, Liz Carr’s recent documentary, ‘Better Off Dead?‘, highlighted that many disabled people already experience being given ‘DNR’ (Do Not Resuscitate) orders when they are admitted to hospital for perfectly treatable infections and illnesses. The assumption that it would be better for them to die than to continue to live in their ‘suffering’ seems widespread throughout the medical profession and society as a whole. Is it any wonder that they don’t trust a law that many see as providing a ‘merciful’ death?

Learning the lessons

When a scandal such as that into infected blood comes to light, Governments always say that lessons must be learned.

I suggest that one of the lessons to be learned is that this is a time for caution – not for widespread distrust, not for anarchy –  but for a modicum of caution when introducing laws designed to bring about deaths. There is no room for error here. Let’s not proceed until we are sure we have fully addressed the problems the Infected Blood Inquiry, the Cass Report and similar scandals have brought to light.