Draft Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020

Lord Blencathra Excerpts

Monday 18th May 2020 Lords Chamber

[Lord Blencathra (Con)]

My Lords, I strongly support these regulations but worry that, with them, we could see history repeating itself. The Act from which these regulations flow was regarded by all of us as the right thing to do, but I recall the iniquitous Liverpool care pathway operated by the last Labour Government. It became not a care pathway, but a death highway. It started with the best of intentions and high morality. It was originally for cancer patients, but soon the NHS expanded it to every patient who could be approaching end of life. It was one of the most disgraceful episodes in the history of the NHS.

Doctors, some very junior, concluded that a patient was terminal and then sent them on the death pathway, pumping them full of painkillers, keeping them sedated so that they could not ask for, or get, fluids. With a lack of fluids, they died off pretty quickly. That then justified their decision that the patient was terminal. Patients were denied sustenance for several days before their deaths, while others were written off even though they could have recovered. But many patients, supplied with fluid by caring relatives, survived the death pathway. The trusts were even given a financial incentive for every person they put down this pathway.

The coalition Government ordered an inquiry in 2012 and banned it in 2014, but some in the NHS carried on doing it. NICE had to intervene. Professor Sam Ahmedzai, chairman of the committee at NICE, 18 months after the pathway was effectively banned, said that it was still being used by some “teams” of doctors who

“thought they knew how to give end of life care.”

However:

“It turns out they’re the ones that don’t know.”


NICE finally outlawed the pathway once and for all and said that junior doctors must not to be left alone to make snap decisions about patients’ care; that there had to be an end to the tick-box culture, with patients treated with respect and as individuals; that staff had to be aware that patients who appear to be dying could stabilise or even recover; and that doctors had to ensure that patients had enough to drink.

That is the background perspective with which I read these regulations and code. Like all, I have huge admiration for the individual doctors, nurses and specialist medical people in the NHS but I do not, for one second, trust its slow, unwieldy, bureaucratic machine. When a patient gives consent under these regulations, there are very few worries, but deemed consent is a different matter. The decision on whether to go ahead with organ removal rests with the specialist nurse, not even a doctor, nor yet a registrar. That nurse has a hierarchy of relatives to consult, and the first one to give consent permits the removal to go ahead. How much effort does the nurse have to make to find the first relative who may be resistant to removal? Would there not be a medical bias to find the next relative who medical staff know to be in favour of it? It is much easier to go to a child who is in favour of removal than an equally ranked child who is not.

Codes A and F are 89 pages long, with incredible details for thousands of medical staff to master, including legal concepts. As the noble Baroness, Lady Deech, has just said, there is even the concept of what “a reasonable person” might conclude. We have all seen the nightmare of lawyers playing at being doctors with their second-guessing of medical competence. I do not want our nurses having to guess at what “the man on the Clapham omnibus” might conclude. These regulations and codes are very important, but they have the potential to turn into a Liverpool care pathway where medical staff know best and just tick the boxes. This has to be rigorously monitored so that another scandal does not occur and that this system goes from strength to strength.