13 Jun, 08 | by Deborah Kirklin
The title of this posting refers to a funding controversy causing outrage amongst patients, doctors, and other health care professionals in the United Kingdom: namely the decision by the government to deny free National Health Service (NHS) treatment to any patient, in England or Wales, who decides to pay for life-prolonging cancer treatment that the NHS does not provide on the grounds of cost.At first glance my starting point might seem like a parochial concern but, in reality, the experiences of the human beings at the heart of this life-and-death drama- whereby the rights and interests of those affected by illness are, for all practical purposes, at the mercy of self-interested politicians- are shared by people around the world, and in many different health care settings. So forgive me as I summarise- for non-UK readers- the background to this sad perversion of the NHS’s founding principles.
Sixty years old this year, the NHS was founded on the principle that if you needed an operation or a medicine it would be available to you, free of charge. Of course, not every service or treatment offered by health care professionals is, or ever was, available on the NHS. Decisions have to made about what can be afforded. But, until recently, the idea that patients could choose to supplement the free care they received was uncontroversial. For example, patients who want travel vaccinations not available on the NHS can receive these alongside the free ones and pay for this service; those who can afford to often pay for private physiotherapy treatment after NHS surgery or after, say, a stroke, thus reducing the burden on the already busy NHS team; an NHS dental patient can choose to pay a little extra to get a white tooth filling rather than the amalgam one offered by their NHS dentist; and women sometimes choose to go to a private gynaecologist for a smear or to be cared for during childbirth.
The purchasing of this sort of ’add on’ care didn’t seem to bother UK governments for the first sixty years. Nothing much to upset their moral compasses in the choice of a woman to have a private, as opposed to an NHS, smear. But with the advent of newer and ever more expensive drugs for cancer, and the decision that the NHS couldn’t afford all of these life-prolonging treatments, politicians find themselves face-to-face with a very uncomfortable fact: patients are not willing to just lay down and die.
Armed with the knowledge that further treatments are available that could prolong their lives, patients are asking for these additional, non-NHS, drugs. Their doctors- having, quite rightly, informed these unfortunate individuals of the optimal treatment for their conditions- wish to facilitate access to these ‘extra’ treatments. A bit like the private physiotherapy or the white tooth filling, just more important. Initially, the doctors and the institutions they worked for agreed to this plan. After all, letting patients die isn’t why any of them do their job.
But then someone in the government worked out that these treatments were- indeed had to be, for efficacies sake- given at the same time as the standard NHS treatments, that is in hospital and in full public view. And then suddenly it wasn’t fair, and we found out that what is fair is stopping anyone who isn’t rich enough to be able to pay for everything from choosing to pay for treatments that just might help them live a little longer.
As an ethicist, as a doctor, as a patient, I want to know when it became fair to stop people paying to access commercially available, potentially (slightly) life-prolonging treatments, with the threat that their otherwise free access to life-saving treatments will be cut off. This repellant decision is defended with reference to the founding principles of the NHS, essentially an argument about fairness. Allowing patients to pay for extra treatments would, claims the government, lead to the creation of a two-tier NHS. Imagine, they say, how unfair it would be if a patient in one bed was receiving extra, paid for, treatment that the patient in the next bed wasn’t able to receive. Better, fairer, more morally acceptable, they therefore argue, to force any but the richest of people to forgo this treatment than to tolerate this awkward, dare I say it, politically embarrassing situation to continue.
Because that’s what it is you know, politically embarassing. If these additional paid for treatments were available quietly, in the home, perhaps bought via that trustworthy health care provider, the internet, then all would be well. Out of sight, out of mind. Which brings me back to my claim that this sort of experience is not unique to the UK, and an anecdote that takes me back 20 years and to my time working in a large hospital in the USA.
Telling my story requires me to make a confession, to confess- on behalf of all of the nurses and junior doctors working in the pediatric emergency room 20 years ago- to stealing drugs. Not exciting or illegal ones. Just ones for sick children, like antibiotics and painkillers. The skill of course lay in working out which parents could and couldn’t afford to pay for the cost of the prescription medicines we recommended for their sick children. This was a hard call: after all, people are proud, and even worried parents never actually came out and said they couldn’t afford the medicines their children needed. So our guesses were, most likely, often wide of the mark. We probably didn’t steal drugs for people when we should have, and we probably stole drugs for those who didn’t need them. The point is that a regular, routine, yet admittedly unofficial part of our work, was to try and work out who couldn’t afford the drugs and then to take some from the drug cupboard and give it to them.
An alternative would have been not to prescribe the medicines in the first place: little point after all in writing out the prescription if the parents couldn’t afford to pay the pharmacist. But that wouldn’t have been fair would it? And doing so would, I assume, have been embarrassing for the hospital: what kind of hospital, after all, refuses to write scripts for a child just because the parents are poor? Which isn’t to say the hospital authorities didn’t know what was going on. They must have worked it out, after all they kept filling up the drug cupboard. It might not have been official policy but it was humane, and in a less than perfect health system it worked, after a fashion. Just as the system in the NHS worked until recently. Not perfect, but it worked, after a fashion.
Recently I’ve been wondering if that’s what we’re going to be reduced to in the NHS: doing our own version of guessing who can afford to pay for the treatments that they need but that the NHS can’t afford. A cancer specialist admitted a while back that he wasn’t sure any more whether it was cruel, rather than morally required, for a doctor to tell a patient that life-prolonging treatment is available, if he or she knows that the patient won’t be able to access it. Perhaps the UK government thinks that if they can stop the person in the bed next door from flaunting their paid for treatment then the ordinary, can’t pay punter will remain blissfully ignorant of what they’re missing out on.
Except it doesn’t work like that any more. Even if a doctor decided to withhold the truth, because the truth would hurt, patients now have access to information in a way the founding fathers of the NHS could never have dreamt of. Ignorance isn’t an option and the truth can hurt. So my question to you, whatever health care system in the world you find yourself in, as patient or doctor, is this: is it right for a doctor, metaphorically or otherwise, to steal drugs if that’s the only way to help patients bypass a system being perverted by the inability of politicians to tolerate embarrassing truths?
If I knew a patient had managed to get the extra treatment they needed, would I, and the hospital team caring for them, be right to keep this information to ourselves or should we cry foul to some higher power?
Should I, as a family doctor, think twice about entering details of any private treatments undertaken by patients, or should patients fear to share this important information with me because, at some point, on the whim of a politician, this information might be used against them? Dare I risk it? Dare they risk telling me? Or might it be safer for them to go on the internet and trust to chance rather than risking either their life or their access to NHS treatment? Are these the sort of ethical conundrums the founders of the NHS and other similar systems were trying to invoke when they talked of fairness? That any of us should have to even think this way is an indictment of the political perversion of a noble vision.
We live in an unfair world. I wish everyone everywhere in the world had free access to all of the best of medical care. I wish every child had access to good food, clean water and high quality education. I’m proud of the NHS and the fact that anyone can come to see me as a family doctor, free from any costs. I wish I could offer open access to all sorts of things to my patients, but I realise that the NHS can’t afford everything all the time. But what the NHS, or rather the government, cannot afford to do is to insult the intelligence of its citizens but pretending that this decision is anything more than an ineffective fig leaf to hide its own embarrassment. Every country should do everything in its power to make available to its citizens the best health care it can. No government has the right to abuse that power to effectively block access of all but its richest citizens to those treatments it decides it cannot make available to all.