How do you value a life? In 1961, at Seattle’s Swedish Hospital, a group of seven sat down and asked themselves that very question. Now remembered by history as the “God Committee”, this group was tasked with picking the first patients to receive life-saving kidney dialysis. They were asked to weigh up the social and moral worth of potential patients, and in doing so they effectively chose who lived and died.
Reports say they made these decisions anonymously, in secret and based on their conscience, without outside influence or even the names of the patients. As an ethicist, I find the concept of the God Committee, and the way they made their decisions, horrific and unethical. Not because of who they were or the criteria they chose to apply; nor because they were so woefully unaware of the social and cultural influences that biased their decisions to begin with.
No, I am horrified because there is little evidence that the committee spoke to a single patient at all. In fact, accounts say patients were referred to by file numbers only, no contact was made by the committee. The committee tasked with valuing life failed to ask the patients how they themselves valued a life – their life.
So how do you value a life? Recently Jonathan Sumption, a former Supreme Court judge, suggested that quality of life and age were significant factors in this equation. In an appearance on the BBC, he argued, and then later retracted, that not “all lives are of equal value”, stating that he felt his grandchildren had more life ahead of them, and thus had more valuable lives. When challenged by BBC presenter Deborah James, who has stage 4 metastatic bowel cancer, Sumption clarified that people with fewer “quality life years” ahead of them had less valuable lives than those who stood to live longer.
Sumption rests his argument on a health economics concept used by the National Institute for Health and Care Excellence (NICE) to make wide scale decisions about what treatments, technologies and services it can afford to offer through the NHS. It is a concept called “Quality-Adjusted Life Years” – QALYs for short.
As it happens, I teach QALYs to my first-year medical students every year in a lecture I give on resource allocation in the NHS. I found Sumption’s understanding of them confusing at best. QALYs are not used to assess the value of a life – they are used to assess the value of a medical intervention.
The basics behind QALYs are that one QALY equals one year of life in perfect health. They are measured 0-1, with 0 being basically dead and 1 being you living your best life. QALYS are a composite of survival and quality of life, and are used to determine the cost per QALY gained of a particular intervention. Ideally, when choosing interventions to offer on the NHS, NICE looks for the intervention that offers the most QALYs for the best price. Not quite bargain-basement medicine – more a value for money approach.
And, apologies to Sumption, but the fact that a treatment offers fewer years of life is irrelevant with QALYs if the intervention provides a higher quality of life then the alternatives.
But let me be clear: QALYs are not nuanced decisions about treatment for individual patients. They are mathematical calculations used to determine service-provision and priority setting for funding within the NHS. QALYs are not fit to calculate the value of a patient’s life.
And they largely don’t. Doctors do not get out their calculators when trying to decide if a patient will benefit from a treatment. Instead they talk to the patient to understand how the patient themselves value their life, to understand the quality of life the patient is willing to accept. That that same life may be brief – the critique put forward by Sumption – is immaterial to the value that life has. That is for the patient to decide.
In fact, every year I tell my students that patients will surprise them by making decisions about what kind of life they will accept. Some may turn down an intervention that on paper provides excellent cost per QALY, and a higher quality of life, in favour of a prolonged, poorer quality life. This may be because living longer in poorer health is in line with religious beliefs, values about the sanctity of life, or practical concerns – wishing to reach a milestone such as a birthday or wedding.
Which brings me to my final, but important point. As we move forward in this current wave of the pandemic, difficult decisions about what resources are available will need to be made about what treatment is on offer, but these decisions cannot and should not be made by a God Committee – anonymous individuals meeting in secret with only their conscience to guide them. Nor should they be made by what are essentially arbitrary health economic equations devoid of real-world context. If and when those decisions need to be made, they should be made out in the open, by a multi-disciplinary group that includes patients and stakeholders, so that they are accountable, transparent and inclusive.
Now is the time for the government and the NHS to step up and embrace both ethics guidance and resource allocation guidance at a national level, to be implemented across the entire healthcare services sector. Every patient has the right, and should be accorded the respect, to articulate how they value their own life within our new pandemic normal.
As it turns out, there is more than one way to value a life, and if we are to truly value all lives as we say we do in the NHS, all those voices must be heard.
Dr Alexis Paton is a lecturer in social epidemiology and the sociology of health at Aston University, chair of the Committee on Ethical Issues in Medicine at the Royal College of Physicians, and a trustee of the Institute of Medical Ethics