I’m a Doctor, Jim, Not an Executioner
Recently on Medium I encountered a piece which used a particularly difficult case to highlight a supposed failing in universal health care, and specifically the universal health care of the United Kingdom, more commonly know as the National Health Service (NHS).
Before I go into my piece roundly refuting the conclusions of this piece, I have to address two points;
- I will not link to the original piece, I’m sure you can find it if you want. It was published by ARC. The piece appears to be Republican propaganda designed to ensure millions of Americans remain without healthcare.
- I am British. I was born in an NHS hospital, my children were born in an NHS hospital, my grandparents died in NHS hospitals, and the life of my step father, as well as my own, was saved in an NHS hospital (the one in the photo above, actually). You may therefore accuse me of bias in favour of the NHS, but I would say that I am certainly more experienced in the triumphs and failings of the British health service than an American who is unlikely to have ever seen the inside of a British hospital, or spoken to health care professional in the UK.
The Story
Recently a tragic case hit the British news of a young baby that had an incurable condition, and the legal fight between his parents and the hospital where he was being cared for. The child in question is Charlie Gard, and he suffers from mitochondrial DNA depletion syndrome (MDDS).
Charlie is currently receiving care at Great Ormond Street Hospital (GOSH), the foremost paediatric hospital in the United Kingdom. When the extent of his condition became known, the physicians attending the case informed Charlie’s parents that they intended to move him from life support to palliative care.
Make no mistake, the condition Charlie suffers from is going to kill him, and would have already if he weren’t on life support in one of the best children’s hospitals in the world, under the care of “a world-leading expert on mitochondrial disorders”*. There is no effective treatment for this disease, a proposed treatment offered in the US (at the cost of £1.2 million, ~US$1.6 million) would not cure Charlie, and there is no evidence it would improve his quality of life, especially when considering the risk of transporting him across the Atlantic.
Charlie’s parents sought to prevent the hospital taking this action, as is their right to do under British law. The case was heard by the High Court, which found in favour of the hospital. This decision was reviewed again by the Court of Appeal, and again by the Supreme Court, and again further by European Court of Human Rights. At every stage, impartial medical experts agreed with the hospital that Charlie’s best interests were served by following the plan proposed by the doctors at Great Ormond Street Hospital.
I do feel for Charlie, and for his parents. They have been put in the unimaginable position of losing their baby boy, despite the help of some of the best doctors and nurses in the world. I feel for those doctors and nurses as well, who fight day in and day out to save the lives of children (28,000 of them a year), and often have to make these hard decisions.
Why this piece was written
A Medium member wrote a piece using this case to attack the NHS. They claimed, without a shred of evidence or any experience of healthcare in the UK, that the decision made by the doctors at GOSH was taken on financial grounds.
The cost of keeping Charlie on life support throughout the months of legal wrangling (he was still on life support up until the 30th of June, and the case was heard by the High Court on the 11th of April this year) would have been apparent to the hospital from the outset, and that cost would certainly have been less than the expense of the NHS funding the medical transport of a terminally ill baby boy to the US for this experimental and unproven treatment (the GoFundMe campaign set up by the parents surpassed the £1.2 million needed for the treatment). It is the fact that this treatment would, in all medical opinion, do nothing but maybe prolong Charlie’s life by a matter of weeks — and in the opinion of some of the world’s foremost experts in the condition, his suffering. The medical consensus is that it is not in the child’s own best interested to be subjected to it. This is the reason for the decision, and is nothing to do with money. Certainly no government minister had any say in the matter, nor did any beancounter, tax official, or insurance company employee.
The accusation that just because it’s a government run health provider, they would make such a decision based on financial reasoning is an insult to the medical professionals within the NHS. These people, who foresake better pay in the private sector, strive to stand (as the Hippocratic oath they swore dictates) between every patient and the icy grasp of death. If you ever dispute that fact, all you need to do is talk with them. While they may claim to take death pragmatically, I know from intimate experience that doctors on the NHS will fight for every life, and lament every one they can not save.
It’s also an insult to the British judiciary, an independent body (unlike the US, British judges are selected by their peers within the legal profession for their grasp of the law, rather than being political appointees). I have seen attacks on British judges in the recent past (I won’t link to the original Mail article, because it’s dire), and it is an attack on the fundamentals of British freedoms. This decision regarding a terminally ill baby was subjected to the full rigour of British law, and was not taken lightly by Mr. Justice Francis of the High Court’s Family Division, Lord Justice McFarlane, Lady Justice King and Lord Justice Sales of the The Court of Appeals, or Lady Hale, the Deputy President of the Supreme Court. And the European Court of Human Rights.
It’s an insult to the British people. We love the NHS. Yes, we know it’s not perfect, it’s made up of humans and humans are fallible. It’s always complaining that it’s underfunded (at the moment, that’s a claim with merit, although it doesn’t affect this case, GOSH has alternative means of funding than just the tax payer, which is how they got to be one of the best paediatric hospitals in the world). But the NHS is always there for us. If Breaking Bad was set in the UK, it would have been “You’ve been diagnosed with cancer, your treatment starts tomorrow.” No question of money. No question of insurance.
But wait… there’s more
The comments on said article raised two other points I want to address.
- Private Health Care
It was asked why Charlie’s parents hadn’t gone with private health care until he was able to receive this experimental treatment. Yes, this was an option open to Charlie’s parents. However, during the legal proceedings, as is the norm, an independent and impartial barrister was assigned to act in loco parentis as an unbiased voice for Charlie’s own best interests. Given the wealth of medical advice, Victoria Butler-Cole who acted in this capacity during the case, concluded that the hospital had provided the best possible care for Charlie and his best interests were served by the hospital’s decision.
2. The Liverpool Care Pathway
This was a controversial plan for the treatment of terminally ill patients, used (by someone who referenced the Daily Mail as a source — there’s a reason we Brits refer to it as the Daily Fail) as grounds to attack the NHS.
The Liverpool Care Pathway for the Dying Patient (LCP), was a policy enacted to ensure that people who were on the cusp of shuffling off this moral coil** were afforded dignity and respect. Unfortunately, in how the original plan was worded, it was incorrectly carried out. That problem has since been rectified (the NHS being an organisation of a scientific bent, does learn from its mistakes). Here’s an independent assessment.
There were terrible incidents where people were not kept informed, or properly able to give consent. These cases have been investigated fully, using proper and thorough procedures, and the guidelines for the care of terminally ill patients has been revised to ensure that informed consent is the most important first step.
I’m going to deviate from my attempts to objectively destroy anti universal healthcare twaddle, and delve into the intimately personal. My maternal grandmother was very important to me. Since I was the eldest of four rambunctious boys, my mother was often distracted from the eldest who was bright, and charming, and constantly told what a handsome young man he was (he still questions all of that), so it was my grandmother who took up the slack and was there for me when I needed a loving voice to tell me to pull my head out of my arse.
She was Irish, very Irish. And as partial to the occasional pint (of gin). And her lessons brought me from childhood to manhood with a very “them as can, has to speak for them can’t” attitude. We were poor, but by hook or by crook, we were never hungry. Our clothes were old, but they were clean. We didn’t have the newest stuff, or the latest fashions, but by all the gods we spoke the Queen’s English like we meant it, we stood up for what was right, and we could stand both proud and humble walking with kings or dunnikindivers.
One Christmas when I’d been a little concerned about my kids and hadn’t been to see her for a couple of weeks, she seems a little off. I was really busy over Xmas*** so I didn’t get to follow up on my concern until after the new year. Then I got a call from my mum. “Grandma’s in hospital. Can you get here quickly.”
There are two times in my life when my heart chilled. On was when my second son was born. There was a moment when one midwife looked at the other, and the junior of the two left the room. She came back with a doctor (a doctor in the maternity ward?) who started warming up the resuscitation machine at the back of the room. It wasn’t need (thankfully) but believe me when I say that I was chilled to the bone.
The second time was hearing that my grandma was on her way out. It was pneumonia. Healthy as she was, she hadn’t given up smoking. I think after my granddad died (and that’s another emotional story) she didn’t think extending her life by sacrificing her vices was worth it.
When her brother had died a few years earlier, grandma had told me, “I can’t wait to tell him he’s wrong.” So when I saw her, frail and pained in that hospital bed, I had to follow her teachings and make a joke of things. “This is a lot of effort just to prove Uncle Kevin wrong,” I said.
At her funeral, I was front and centre. I still don’t know why. And I was fine until the Archer’s theme played, as the coffin rolled backwards. Then I lost it. I’m actually in tears writing this now.
What I remember is family doctor, coming up to my grandma in the hospital. He asked her, “Are you sure you don’t want to go into Wonford?” and my grandmother, with the bearing of a duchess, sick and in pain though she was, saying, “No, if this is the end, then so be it.”
The doctor nodded, and made a note on her chart. Five minutes later a nurse arrived to adjust the IV. My grandmother passed peacefully.
I have lost many loved ones in the hands of medical professionals. Because death is inevitable. And the staff of the NHS have never stopped caring. Any British trained nurse could work anywhere in the world, often for more money, especially in the private sector. But they stay. And they strive. And they deal with death like that with compassion, and humanity, and grace. I thank them for that, because I don’t think I could handle death on a regular basis and not go mad.
footnotes
* A statement made by Mr Justice Francis of the High Court. In defence of the patient’s privacy, details are withheld about his attending staff.
** Can’t refrain from a respectful Shakespeare reference.
*** The X in Xmas is actually a Greek character, Chi. (Which looks like an X) Chi is the first letter of Christ in Greek (the lingua franca of the Roman Empire).
— Thanks to Aura Wilming for reading this before I presented it to the public.
