“What moves the evil man is the love of injustice” John Rawls
I want to let Rawls’ Veil of Ignorance drape my eyes when I think about systems. This post is about what happens when that poorly tied Veil slips – when biases, weaknesses and humanity shape my decisions. It is also an exploration of one of the most challenging decisions we have to make – a question that thankfully I don’t have to answer. This whole post is written as an ignorant layman, so do feel free to rip it apart.
The Question: How do we decide who deserves healthcare?
Let’s start with some of the practice. I think the current system blends a few different approaches of how we allocate resources to people (note this list is highly unlikely to be comprehensive, so please do let me know if you observe any other mechanisms for distribution).
The NHS thinks in terms of Quality Adjusted Life Years when picking in what and whom to invest. Let us call this a broadly egalitarian approach – in this case individual decisions are based on the ability to prolong a “quality” life for any given individual, regardless of who that individual is. In a broader sense, there is equal value to every individual under this model, with differentiated allocations based on something we can all broadly agree on as either need or intrinsic to the value of healthcare.
Some among us have private health insurance, so our access is then determined by which policy we can afford or is given to us by our employers. This is topped up by paying for services. This could be labelled a market-based approach. Here, the decision is based on our own resource availability to pay for treatments.
The President of the United States and Saudi Princes are rushed to treatment without regard for us plebs. If we want to be generous we could argue this is a utilitarian approach – we allocate resources to serve the best need of society at large, treating those with a greater capacity to do good. If we wanted to be cynical we would say that this is an elitist approach, where some in society are allocated services by virtue of a quality not linked to need. The elitist approach can and has certainly been used as a justification for some having access over others but, for now, I will assume that most people who read this will agree that this an unfair method of allocation, and we will ignore it for now.
I’ve spoken to people who work with hospitals in rural India with treatments where demand far exceeds supply, who do operations first come, first served (with some caveats). I cannot see any reason why we can’t just call this a first-come, first served method of allocating services, where people queue up and we do what we can in that order.
I myself have pushed and cajoled doctors and nurses to offer loved ones treatments that were not initially on the table. Let’s call this the “shout the loudest” approach, where resources are allocated based on who can manipulate the system to their own ends the best.
There are underlying assumptions that underpin why we might choose one or other of these systems to make decisions about treatment.
Let us start with the market-based approach. Here, we believe that healthcare is a commodity like any other. The more money you have, the more you can afford. If you don’t have money or insurance, you don’t get treated. Michael Sandel is quivering in his boots at the thought of this (and so am I). The drive for allocating healthcare in this way is fervently advocated for in the USA, where libertarian ideas are central for a large share of the population, certainly more so than on our side of the pond – the underlying principle is human freedom, which trumps that of needs-based access.
The egalitarian approach is the one that feels most comfortable to the people in my Veiled Yoga Pants Bubble. The underlying assumptions here are that healthcare is a commodity that is not like others, and access to it should not be determined by wealth. There is something intrinsic to healthcare that access should be determined by some measure of need for the care. The NHS uses, in part, Quality Adjusted Life Years (known as QALYs – a fascinating topic on their own, perhaps one for later) – the allocation of resources is determined by the number of quality years of life that it could add. I’m no expert, but there must be other factors otherwise most treatments would be for babies – and thus exposed is one of the challenges of this type of approach: principles considered fair by me may not be considered fair by you. This also covers the first come, first served model which, on reflection, is just one type of egalitarian approach.
A true utilitarian would look at the value that someone will add to society to allocate healthcare resources. Seems good on some level: you should save Jesus or MLK or Jeff Bezos, as they will change the world. This has two big challenges. Number 1: What is the value set? Milton Friedman would probably pick Bezos over Jesus in terms of value to the world, John the Baptist would probably reverse that decision. Number 2: How do you measure potential value? At the point of decision, the future has not happened. Someone or some group needs to make both these decisions. And for anyone who is not valued, this is tantamount to tyranny.
Some underlying principles. That’s layer one of this question. My head is hurting, and it is already a question I want no part of.
Then there is layer two: The psychology.
My mum is ill. My daughter has a fever. My grandfather needs a new liver. In each of these cases, the system goes out of the window. I want the best treatment for my loved one, and I want it now. What do you mean the MRI scanner is booked for a week?! I’m going private. I can’t get that experimental immunotherapy on the NHS?! I’m going abroad. Everyone wants a fair system, but nobody is willing to wait when it is not happening to someone else.
On the other side of the fence, the doctors’ side, there are also psychological forces at play. I can make 3x what I make by going private rather than serving the NHS? Of course, that’s what I’m worth.
I believe in a system that values each of us and distributes treatment on a basis that is fair no matter where I am in society. In my head, I’m an egalitarian. But when it was my mother in the hospital bed, I was not willing to wait. I wanted the best doctor, and I wanted him now. I pushed, I challenged. I even looked at experimental treatments in the US (though none were suitable). In my heart, I could not live with my principles. So, are they really my principles?
The larger problem is then this: We can put in place a system, but it becomes very hard to implement when decisions do not fit with the reality of what we want when some of us can push for more, when some of us have an outsized influence to bend the system to our will. It is small, rebellious acts every day that slowly corrupts the system and leave its principles festering on the side, forgotten. The psychology, the here and now, the pragmatic will trump the lofty, noble ambition.
Finally, let’s think a little about that perennial argument I hear: if you are rich enough and you believe in and value the NHS, then you should go private. The theory, on the surface at least, is straightforward. If you can afford to not be treated by the NHS, you take your problem elsewhere by paying; the NHS can use the resources it would have used on you on someone else, and you have added to the total sum of the health system. There is nothing wrong with any of this. What you have done, however, is chipped away at your belief in an egalitarian healthcare system. It has become one system for you, and another for them. To maintain that egalitarian principle, you know what you have to do right? Yes, that’s right. You’ve got to give the money you were willing to spend on your own treatment to the NHS, and then get right back in the queue. Can’t do it? No? Nor can I (probably).
All of this rambling is in response to a question I do not have to answer. I admire and do not envy those that do. What I need to do is figure out how to get all my cognitive bias ducks in a row to rationalise myself out of knowing that I’m Rawls’s evil man.