14. So this is real life

Wind the clock back to 5 July 1948. You are on the threshold of a brave new NHS. You are full of hope for the future of the your health and your fellow citizens in the UK, to put the privations of the war behind you, to have a peaceful, healthy and prosperous life for yourself and your children.

And, had you been the minister responsible for this great leap, Aneurin Bevan, you would have believed that it was only a matter of time before the health service had solved most of our health problems and spending on the services would gradually fall. What happened? Many causes of death, disease and injury have been defeated, in whole or part, but the costs and the demands on the health service keep going up. Some of our problems are self-inflicted. We continue to consume a lot of alcohol and the range of drug-related problems (prescription and recreational) has increased dramatically. Rates of smoking have declined but we still, collectively, smoke far too much. We eat more richly but not more healthily. There are also a lot more of us, over a third more people in the last 75 years. And we are a lot older. In 1948, there were fewer than 2 million people aged over 75; now it is closer to 12 million. Some of the demands on the health service relate to new solutions. In the past, more people simply died from their problems or died more quickly. Now we can preserve life for much longer. There are also many more elective treatments such as cosmetic plastic surgery.

Back in 1948, if you asked how to decide whether someone was alive or not, they would almost certainly have referred to the beating of the heart. Today, it is not quite so clear and a medical professional would probably refer either to the persistence of any form of brain function or the persistence of autonomous integration of vital functions, but determining the boundary between life and death remains difficult. In cases of accident and emergency, great emphasis is placed on maintaining brain function. In many cases, this change in definition represents a real advance - the doctors put the emphasis in the places it is most likely to do good, to save lives. But it also shifts what we think it is to be alive. It shifts it from “Is the heart beating?” (or can it be restarted in short order?) to “Can the brain (and/or integrated vital functions) be maintained?” In earlier ages and in some cultures, such questions mattered less. What was important was the soul, which persists. Our definitions (of life and anything else) are abstract but they matter in the real world. As our definitions of life change, what we do (or encourage our doctors to do) changes.

A few years ago I had cause to discuss the demand for children’s hospice care. The most interesting conversation was with a senior health service practitioner. She told me that the demand had, perhaps counterintuitively, declined over the last quarter of a century. Why? The most important is that the medical profession can preserve the life of newborns and children much more effectively. Children’s hospices were developed for children who would never see adulthood. The advances in medicine mean that there are far fewer of them. The second is less pleasant to consider. She told me that as late as the 80s, and probably later, many more children were allowed to die because their prospects of life were so challenging both for them and their carers. And this leads me to the core of the subject of this post: what is the value of a life?

We could go back a step and discuss abortion. Induced abortion has happened for centuries but it is still highly contested morally, and in some countries, legally/politically. How has science helped us to decide in this debate? It has told us that there is a point of viability for a foetus, somewhere over 20 weeks after conception. It can tell us that there are occasions when the life of the mother is at risk during the pregnancy. And in addition to the contributions of scientists, we may want to take into account social factors such as foetuses conceived by rape and the rights of women to decide. But science cannot make the decisions for us.

Covid-19 set governments different questions about life and death. Many of these questions had unknowable answers at the beginning of the pandemic. Several involved answers that meant, effectively, that someone was playing God and deciding by proxy who should live and who should die. The rhetoric during the crisis was “Follow the science” but even the more correct response, “Scientists recommend, politicians decide” was simplistic. The scientists’ recommendations contain within them value judgements. Politicians may confirm, overturn or even ignore and present alternative judgements of value.

And in the week that I write this, assisted dying again becomes front page news. In this case, people wish to play God themselves and write their own ultimate chapter. Of course, the advances in medical science and technology have enabled life to be extended for many people and for most of them in ways that they and their families consider valuable. However, that is not always the case. In Being mortal, doctor Atul Gawunde explored value in life and death. In one case, he looked at the experience of a woman in her 30’s who had been given a terminal cancer diagnosis. The choice? A few months of life with only palliative care or maybe a year and a half with invasive treatment. The woman, who had a young child, chose the latter, but she regretted the choice. Better to have a short good time than a long tortuous one. And to some past generations, and in some cultures today, the whole discussion would appear somewhat strange. Death is merely transformation, a preparation for another form in which the soul endures.

In all of these examples there is a common question: how do we value life? We could say that all living things are valuable and at face value it is true. But when we begin to ask if our actions reflect our values we will find that we and our representatives, through ignorance, accident or design, select some groups as being more valuable than others. The medical workers rightly gained a place in the nation’s hearts for their willingness to put themselves in the face of the virus. We don’t feel the same way about the actions of government ministers who decided that it would be appropriate to discharge older people from hospitals, en masse, to be cared for in community settings. According to news reports during the Covid Inquiry, “Boris Johnson agreed with some Tory MPs who thought Covid was "nature's way of dealing with old people”.” Taking these two things together, it appears that their lives were seen as less valuable than other people in the community.

Is a women in danger of losing her life in pregnancy more or less worthy of living than her unborn child? Science and technology cannot answer these questions. In fact, they pose more questions. The answer is a matter of politics and religion, of the ethical choices of a community. We cannot outsource ethical decisions to technicians. Technicians change the questions rather than deliver the answers. We need to take responsibility for the difficult conversations that we must have.

British democracy is not constructed in a way to encourage ethical conversations. And the “culture wars” approach to politics makes it more difficult still. Discussions about the health service get bogged down in discussions of efficiency, rather than consider what might be done to answer more difficult questions about life and death. It is simply too unpopular to be explicit about any priorities the health service may have. Better to muddle through. The scientists and technologists have enabled us to live longer lives and to terminate the potential lives of foetuses much more effectively. They have invented new measures of life such as Quality Adjusted Life Year, a perfectly healthy year of life. Life, if it ever was, is no longer just “natural” but it is also determined by abstract human measures.

And in most of the things I have discussed here, the focus has been individual. However, value in life cannot be atomised in that way. Yes, value in life is determined in important ways by the length of our lives and increasingly by the quality of the external environment. But much more important to most people is the quality of their mental lives and in particular the quality of their relationships. When my daughter married, I talked about the different loves in a life: parents for their children; children for their parents; friends for one another; and, the mutual choice of a partner, perhaps for life. There is also enormous value in community in its various forms and in the institutions, formal and informal, that we create. In focusing on the body, on corporeality, medicine helps to extend the base for these other things of value, the things that, for me, make life worth living. But medicine has also set us new ethical challenges that politicians are frightened to discuss openly, let alone tackle.

It is self-evident that to be able to live a good life we need to survive but if all of our attention is on survival, if the measures we use to judge the quality of lives are functional, we lose much of the value and dignity of living.