I covered the Alfie Evans story for weeks, and I was very disturbed by his death. However, the same system saved my 45 year old husband's life.
I believe we need to do more to protect the lives of the very young, the very old, and the very disabled. However, the doctors, nurses and other medical staff of the NHS save lives of adults and children every day.
It is too bad I had to fight so long and so hard to get Benedict Ambrose the medical care he obviously needed, again and again. However, it is a miracle that his chief surgeon was a specialist in paediatric surgery: B.A.'s tumour, though rare, was less rare in children. It is very fortunate we live in Edinburgh and had access to this expert.
Unlike Alfie, B.A. received excellent care from both an NHS neuroscience department and an NHS intensive care unit. This is not to say there were no mistakes. There were mistakes. No doctor was infallible, and not all nurses kept all the details straight. However, the combined efforts of many NHS-employed professionals saved B.A.'s life. His full recovery, deemed "miraculous" by his surgeon, I attribute to God's mercy.
Like Alfie, B.A. was on a ventilator (briefly), artificial hydration, and artificial nutrition. But I never had to walk in Tom Evans' shoes.
As someone who grew up in a system of "socialised medicine", I think the NHS could learn from other such systems. For example, my experience of medical care in Toronto is that it is much more family-centered and much more respectful of patients' religious beliefs. I believe that it is also more accommodating and knowledgable about ethical forms of fertility care, for example.
Other systems of "socialised medicine", as in Poland, Germany, Italy, may be much more aware that human life has a value quite apart from the "quality" a middle-aged, well-paid professional in robust health might think it should have.
But that said, both my husband and several of our friends have received satisfactory care from our local NHS.
The only thing left to say is that I know how loveable a family member is even when--or especially--he has serious cognitive impairment. I missed the "old" B.A. while he was gone, but I loved funny, cranky, "sliding-into-a-coma" B.A., too. As permanently brain-damaged as he was, Alfie gave joy to his parents, and as brain-damaged as B.A. temporarily was, he gave joy to me.
Thank you for this. I am currently living in the land of medical bankruptcy -- oops, I mean freedom -- and some of the rhetoric I am seeing around this case has been rage-inducingly ridiculous. Like, "socialized medicine means the government can kill your children!" levels of hysterical nonsense.
ReplyDeleteNever mind that private insurance companies decide to withhold treatments and hospital transfers and deny coverage all the time. Never mind that hospitals here have medical ethics boards as well, and that courts will step into cases when needed here as well. The Alfie Evans case is/was tragic on all sorts of levels, but it is not fundamentally about private vs. socialized health care, and it's ridiculous to try and make it so.
(End rant.)
I don't believe that the Alfie Evans story involved a problem with 'socialized medicine.' That said, I think that those who emphasized that aspect of Alfie's case were angry because the system, and ultimately the state, usurped the right of his parents to determine the circumstances of the child's death. A private health-care provider might decide to withhold care but it would not - usually - be legally permitted to say 'No, you may not take your sick child to Italy/home with you.'
ReplyDeleteClio
Clio -- I think a private health-care provide could still refuse to discharge a child, and then ask for a court order to prevent the parents from taking the child out of the hospital against medical advice (AMA), at least in the US. I know when my grandma was in the hospital two years ago, she remained in intensive care a few days longer than was really necessary. The doctors wouldn't discharge her until she could show that she had found a location to continue her care as an outpatient, and it took some time to find a location that everyone (grandma, private insurance, hospital doctors) agreed on.
ReplyDeleteAh well. Just another reminder that I don't know everything...
DeleteI find it difficult to understand the US system because it is scarcely a 'system' at all. I was going by the anecdote of a lawyer friend of mine. She told me about an elderly man whose care team (here in Canada) kept trying to put up "Do Not Resuscitate" signs on his bed against the wishes of his family, who lived in the US. They (the family) sent up a lawyer who told the hospital in no uncertain terms that they would be sued into the ground if they kept it up. They desisted. But that is, I suppose, a rather different set of circumstances.
Clio
I mean, I think in most cases hospitals defer to families, especially if families are arguing really strongly for a particular type of care. (Again in my grandma's case -- she was unresponsive and on a ventilator for several days, and a couple of her doctors began saying that the ventilator should be turned off. My mom and her siblings asked for a few more days, and the doctors gave in -- and it was a good thing they did, because she woke up a few days later.) Anyway, I think 99.9% of the time these things are either hashed out in meetings between medical staff and families, or the hospitals wash their hands of the matter and let the patient leave, as long as a bazillion forms are signed first absolving the hospital of any legal responsibility for the patient. But in theory, the legal apparatus exists that would allow a hospital to argue that a parents' desired medical treatment for their child is so potentially harmful to the child that their parental rights should be taken away.
DeleteAfter his final operation, B.A. REALLY wanted to leave the hospital. He is a light sleeper and the lights and noise on the ward were driving him crazy. Because my biggest challenge had been getting him INTO hospitals, I wasn't thrilled about his, and when the doctors said if B.A. discharged himself it would be against medical advice, I convinced him to stay a little longer. Ultimately, he could have walked out, but I was scared they wouldn't let him back in!
ReplyDeleteI suspect the long-term effects of the Charlie Gard and Alfie Evans cases are going to be an erosion of public trust in UK hospitals, especially when it comes to children. I'm worried that these cases will stop some people from getting medical advice at all. Personally I hated going to see doctors for years because so many of them are in bed with the ab*rtion industry and now also because of their collusion with the IVF industry. Ugh.