End of Life Care

Lord Rees of Ludlow Excerpts

Tuesday 14th March 2017 Lords Chamber

[Lord Rees of Ludlow (CB)]

My Lords, I add my thanks to the noble Baroness, Lady Finlay, for introducing this debate with such authority on an issue of inescapable relevance to us all.

We already have some options. We can ask not to be resuscitated if we have heart failure; we can decline invasive cancer treatment. We can legally formalise such wishes via an advance decision to refuse treatment, or via lasting powers of attorney. It is dismaying that only 4% of people who should take such measures have actually done so, and of course this has to be done before they lose the capacity to make choices for themselves.

A clear signalling of our wishes for end-of-life care will become even more important as medical science advances, creating, in consequence, a widening gulf between what could be achieved by extraordinary measures and the way in which most of us would prefer to end our days. This leads me to a parenthetic comment prompted by the short debate only last week on assisted dying. That debate focused on those who, even with the best palliative care, spend their last days in a predicament where they feel that life is no longer worth living.

I realise that this is viewed as a separate issue and that many people are deeply opposed to legalising assisted dying, but there will be an increasingly fuzzy boundary between assisted dying and the consequences of having signed a directive to refuse treatment. There will be cases when doctors will be prevented from acting even in cases when they feel confident that they could achieve genuine improvements in someone’s quality of life. The blurred distinction between killing and letting die is familiar to anyone who has had courses in philosophy and ethics.

Paragraph 13 of the end-of-life care review urges that,

“by the end of 2019, every local area should establish 24/7 end of life care for people being cared for outside hospital, in line with the NICE quality standard for end of life care, which supports people’s choices and preferences”.

The Government’s response, as far as its sentiments go, ticks all the right boxes. However, what causes anxiety is the gap between the aspirations and what can realistically be provided in a policy regime where austerity and the small state are the mantras, and where the demands are growing because more people are surviving to an advanced age with consequent more complex needs. What is surely uncontroversial is that far more resources should be deployed to care properly for those nearing their end, either in hospices or at home.

If we were in Japan, we would hear futurologists extolling the role that robots will play in caring for the old. Automatons can indeed help with household tasks and with mobility. As the noble Baroness, Lady Lane-Fox, has emphasised, digital technology is of crucial value. However, let us not kid ourselves that they are an acceptable substitute for genuine carers—real human beings, with empathy and time to talk with, and comfort, those who are dying. Robots may surpass humans in precision surgery and medical diagnostics, but they will never replace humans as carers. Even if a vulnerable person—say, with advanced dementia—is comforted by a machine or even a soft toy, their human dignity is being betrayed if that is all they have. We would be short-changing the old if we offered them just a mechanical simulacrum of sympathy.

Not only are there now too few jobs for carers, but these jobs are poorly paid, insecure and carry low status. This is surely a signal that we need a change in public attitudes, in the deployment of funds and in the labour market. We are told that workers in whole segments of the economy will be displaced by automation. Huge numbers of people, mainly themselves in middle age, may become less employable in traditional economic roles. However, many of them will have just the qualities needed to be excellent carers. That is why there needs to be a policy rethink, leading to innovative ways of funding in both the public and charitable sectors an expansion of upgraded, esteemed and secure employment for carers so that we can all feel confident, when our time comes, that we will have access to the support, both physical and spiritual, that is now available only to some.