During my time at medical school I had to write an essay on medical ethics. This was my first foray into the world of ethics, a complex field that endeavours to decide on the value system underpinning our profession and apply these principals to daily practice. It was perhaps one of the most intellectually stimulating and rewarding projects I did at university.
The reason I mention this is that during my research for that essay, I came across the interesting ethical principal of ‘the rule of rescue.’ This is a slant on discussions about justice, that branch of medical ethics where we decide on what is fair in medicine, such as in the area of resource allocation. In a public health system like the National Health Service (NHS), resources are inevitably limited, and decisions constantly need to be made about the right and ‘fair’ distribution of these resources. How we decide what is ‘fair’ is inevitably contentious, but one approach which is very frequently espoused by the media, and unwittingly absorbed by us news-reading members of the public, is this principal of ‘the rule of rescue.’
Let me explain. Imagine a new cancer drug, let’s call it Miraclecureavir, is developed by a large drug company. Inevitably the investment into the drug has been huge, millions if not billons of pounds, and the company is determined to recoup that cost for their shareholders. Therefore the cost per treatment is set at £80,000 per patient. However, the trials show that the average benefit of Miraclecureavir is just a 2 month increase in life expectancy.
In this situation, the powers that be who decide health expenditure sit down and decide whether it is value for money ie is it fair to spend all this money given the benefit it produces? In England, an organisation called NICE is generally involved in this. Understandably, after a cold and dispassionate assessment, sometimes it is decided that the drug is not value for money, that it would not be ‘fair’ to divert such huge sums of money to such a small benefit. An objective process of number crunching shows the money would achieve more if spent elsewhere.
You do not need to read many news Apps to realise this is not always how funding decisions are portrayed. Rather than focussing on the above approach (sometimes described as ‘utilitarian’), reporters frequently adopt a ‘rule of rescue,’ which goes something like this: Mrs Y, 45 year old hardworking and much loved mother of 3 children (all pictured), has been diagnosed with cancer. Despite all the conventional treatments, her disease has progressed. However, a lifesaving new treatment, Miraclecureavir, has just been developed. All of a sudden there is hope for her and her family. However, a government hell- bent on making cuts to the health budget and generally destroying the NHS is depriving her of the chance of a cure. It is simply not fair, justice must be done.
The individual story is all- important, with an emotional appeal to the situation replacing cold numbers. Of course, we must never lose sight of the fact that at the bottom line, decisions about the numbers will always affect individual people. A person is not just a statistic.
However, it takes but a nanosecond of reflection to see the glaring problems that this can create. In this piece I would like to just focus on one, which is simply this: who do you think are the individuals on the front pages at the centre of these stories? Children? Yes. Women with children? Yes. Articulate middle class professionals? Yes. And which diseases will these individuals have? I challenge you to think of the last time you read about a controversy of an individual’s treatment that was not for cancer.
Following on from that, I can tell you with a high degree of certainty that you will never have read a mainstream news article about the patients currently being deprived a curative treatment for their hepatitis C, possibly condemning them to a future of cirrhosis, liver cancer and early death. This is in a context where mortality from liver disease has risen 500% in the last 30 years, compared to a fall in mortality from heart and lung disease.
I want to suggest that one reason we don’t have these stories in our papers is because of a reverse ‘rule of rescue.’ The average person with viral hepatitis C has either used or continues to use intravenous drugs, is homosexual, or both. Frequently they have co-existing alcohol problems. They often make bad choices, they are certainly not articulate about their health needs, and all-in-all do not provide the portrait of someone we would like to dive in and rescue. They live on the margins of society, and quite often their health needs reside in the margins of budget decision making as those who speak louder, clearer and more persistently take centre stage.
This isn’t right. As a profession we have a duty to address the burden of liver disease which, be it from alcohol, obesity or viral hepatitis, is rising year-on-year. But we also have a duty of care to the people on the margins. I was challenged this week on a course when the lecturer spoke of a need for advocates in the area of hepatology (liver disease). These people will not sell newspapers with their stories, unless it is with articles heaping blame on their hopeless situations; they do not have friends to organise fundraising fun-runs. But week after week I see them come into hospitals and dying in their 40s in a year where the average life expectancy is approaching 80.
There are no easy answers for justice in healthcare. But I do believe that on the final day when we have to stand before our Judge, God will say: ‘Whatever you did for the least of these, you did for me.’