This Facebook discussion explores complex ethical questions about life support and end of life decisions, the relationship between health care and ‘big pharma’, and differences between attitudes to these issues in the US, Canada and the UK. Participants include health care professionals and women speaking from their own experiences of caring for sick or dying children, friends and relatives.
Deborah One shocking thing to emerge from the very sad case of Charlie Gard is the enormous difference between culture in the UK And US. In the UK it would be completely ethically unacceptable for a doctor to suggest a Rx on a person he had not seen and knew nothing about clinically – especially if he gained financially from the treatment (e.g. The Dr Wakefield immunisation saga). But in the US I am not sure that this is seen as a really unethical thing. I feel it is really difficult to understand another culture – I’m not saying that either is correct or incorrect – just observing the differences. Of course in this case the US doctor not knowing the facts did lead to a great deal of hope – which could never have come to anything.
Fiona Yes: this case exposed the differences in our cultures very clearly. There are questions about trust and discernment, as well as about medical ethics, that we seem to answer very differently.
Chloe I have been an RN for 33 yrs in US and currently work intensive care and this is highly unusual. Insurance companies pay for service and generally dictate level of care, where and what is going to be paid out etc. Very involved process with social workers, discharge planners, etc. For this MD to take credit for service of patient he hasn’t seen, etc. is very strange. Is he part of a philanthropic organization, Christian based service, medical research or is he just tooting his own horn?
Deborah Ah – pleased to hear perhaps that things might not be so different. Of course I don’t know all the details, but from court documents it seems parents contacted him. He said he could help but had not come to see the child (though invited to do so by hospital) or read his notes or even previous court documents. He had a financial interest in treatment offered. That’s how things look from a distance. Very unusual.
Julia He would benefit from the use and publicity. Remember this treatment had never been tried, not even on mice the first level of treatment.
Ellie Deborah, I think the GOSH statement said they were already in touch with him and trying to get permission from their ethics committee when little Charlie had seizures and deteriorated. This was late December. I am so saddened by the way reputations are being blackened by this. I can understand the parents grasping at any straw but it worries me that other parents will be scared about their own children.
Constance To me in Oz it had the appearance of making a fast buck (or several, given the numbers in the news) at the expense of the family’s tragedy. It’s also odd that, as far as I saw, no other US docs were saying to give the treatment a go. That one man alone could get to even try something that ‘might’ work … research isn’t a solo occupation these days. But then, I’m often told I’m cynical.
Julia He is more a scientist than practicing doctor. I think he wanted publicity and a chance to try a treatment that hadn’t even been tried on any laboratory animals. Looking for funding I think. Sad … I wish media hadn’t been so involved but of course that was because of the parents.
Violet Apparently he didn’t even read the notes or see the scans. Great Ormond Street is a hospital to be proud of in child care, but even they do meet very unusual conditions rarely. I can remember a consultant from there coming to talk to a Turner’s Syndrome group. (Females with a missing chromosome X, or one which twists back and self attaches in various places.) She was ‘the expert’ but after a few minutes she said ‘Turner’s girls can’t whistle.’ My daughter let out a piercing wolf whistle ( I think she was about 11). Others joined in from all round the room. The doctor had the grace to say, ‘I should have said ‘In my limited experience, from the few patients with this rare condition that I have seen, there are some Turner’s girls who cannot whistle.’ Yet I’d trust my daughters to Great Ormond Street any day.
Deborah) Yes – not many with Turner make it to birth. Very high incidence of fetal loss. Then high risk of anomalies – particularly aortic arch.
Violet My daughter Sue was first diagnosed they were going on an old description from the 20s and assumed very low intelligence – I was told to go home and forget her. In fact I’ve never met a Turner’s lady, except in one instance, who was not highly intelligent. Apparently it just depends upon whether the chromosome is completely missing or has attached itself elsewhere or turned back on itself – many related conditions rather than one. When Sue was in her teens there was mention of the condition by the BMJ – still quoting that old article word for word. She was furious and got all her Turner’s friends to write in. They withdrew the wording, but no apology. It was in a Family Medical book – so teachers read it too and made assumptions. We had to fight so many times, including getting any treatment when she stopped growing totally by about two and a half. Excuses were ridiculous. Finally I was told that she was not psychologically prepared for treatment. I told them she wasn’t psychologically prepared to use the gutter in the boy’s loo as the teachers were afraid she’d slip if she climbed up on a toilet seat – I wasn’t allowed to take in a toddler step. She began treatment that day – aged four and a half, but never fully caught up. Her ambition aged eight was to be able to reach the top shelf in the supermarket – but we live on to fight another day.
Ruth I do think there are deep cultural differences between Americans and Europeans – and of course among and between Europeans – and I don’t think there are any problems with acknowledging that. It’s not a value judgement. However, for years and years, well-funded American evangelicals have been spreading their vile theology around the world, often with the collusion of Catholic priests, and particularly with regard to the promotion of homophobia and the prohibition of abortion and contraception. I’m not pro-abortion, but these campaigns seem to me to have nothing to do with respecting women and protecting children, or there would be far more concern for wider aspects of social and economic justice. They are simply ideological bullying. What really outrages me about the Charlie Gard case, as well as the points made here already, is that this tragic and complex case has been hijacked by the so-called Pro-Life movement in ways that ride roughshod over hugely delicate and ethically nuanced decisions being made through close collaboration between the medical profession and the courts. Under British law, the welfare of the child takes priority over all other considerations (at least, once the child has taken its first breath outside the maternal body, which is where our respect for life begins to fall apart). In this case, I think we’ve witnessed an amazingly positive example of how a mature democracy seeks justice when law and science become involved in rare and difficult ethical dilemmas which are heartbreaking for the individuals involved. To say that the rights of the parents are inviolable in such cases is to treat children as commodities and not as full human beings. We don’t say that parents have absolute rights with regard to euthanasia, corporal punishment, etc. etc. In this case, I think British people should give thanks for our medical and legal professions, and I think that rabble that calls itself Pro-Life should get back to the States and do something about millions of people of all ages who will face suffering and early death because of that dangerous buffoon in the White House. There’s a very good article on Charlie Gard and the US Christian Right by Lara Whyte in Open Democracy.
Joanne I see all of your points and respect them deeply. Speaking from the 3rd wheel of Trinity (my experience), health care officials have their perspective and patient advocates (whether parents, wives or others) have theirs. After my husband had a stroke and spent a month in inpatient rehab, the health care professionals bullied me to place him in a nursing home. It was terrorizing. I refused and he recovered. His physical therapist did his doctoral case study on Ron (the best patient I ever had who didn’t listen to me.) Point being – in some cases there are no wrongs or rights, just different perspectives. I have no reason to believe these parents’ perspectives weren’t as valid as mine in Ron’s case. In fact the emergency room physician told me to talk to him now as he was just going to fade away. I had to demand he receive TPA and be transferred to another hospital. He said, ‘Lady, that’s probably not going to happen.’ If my physician friend hadn’t appeared it probably would not have. The perspective of advocates needs voice and space in the decision making process.
Deborah Yes I do so agree with all of this Ruth.
Julia I posted a great article making just that kind of point re the two countries: Is British or American View of Charlie Gard Tragedy More Catholic?
Sylvia This is so complicated – there are multiple perspectives. I see that contrasting one geographical perspective with another, or defining cultural differences as in this article, is one place to begin the discussion but I really hesitate to do this. I now live in Canada – I arrived here at the age of 46 so even though I have lived here for 20 plus years I still consider myself part of both cultures – British and Canadian. I have just spent a few days in California, attended mass there. Maybe it was the church we attended but the newsletter, homily and notices were very evangelistic in tone and there was mention of the church militant. There was mention of mortal sin, the evils of transgender and gender dysphoria acceptance, abortion (of course) and the evils of succumbing to modern day society’s views without witnessing to our Faith and finally the danger of dying in a state of mortal sin. There was an intensity of a kind of faith that was clear and uncomplicated – no grey areas – and I felt very much on the periphery. In spare moments over the last few days I have also read my on line version of this week’s Tablet magazine – including an article on Charlie’s case – and dipped into all the regular on line versions of Catholic newspapers on both sides of the Atlantic. I am beginning to see striking differences in the Catholic cultures everywhere and wondering where I fit. Canada, culturally, tends to fall in between Britain and America and the cultural differences are seen in our churches also.
Olive Talking about perspectives – I have just been compared to a child murderer on the UK March for Life page , because I challenged their hostility to Great Ormond Street Hospital and their insistence that the hospital were somehow angling for the death of this poor child. This is hysteria and it is out of hand.
Deborah I don’t think they can really understand the medicine. This has never really been an ethical decision (such as deciding on ‘quality of life’ – which I’ve seen some philosophers equate this to). I think from quite early on it was likely to be clear to that this little boy was going to die and the question was about the acceptance and management of the process of death. It was never been a pro-life issue.
Olive Deborah, I agree it wasn’t a pro-life issue, but it was hijacked by people who don’t know what honesty or integrity are.
Deborah Olive, yes, I have looked at the page. There are some very ill informed folk there clearly. They obviously don’t have any clue about the nature of intensive care or management of the process of death. Which is fine – until you start to give your opinion on it. But that happens a lot on social media I guess.
Olive Deborah, I wasn’t clear – I really meant that the whole situation was hijacked by the pro- life movement. I’d never seen that page before, it holds no interest for me usually but I was so angry at what was being said about this issue. I don’t care about personal abuse but it saddens and worries me that people can be so stupid and ill informed.
Deborah Olive, indeed. I also have seen this little boy’s case discussed by many who either don’t understand or deliberately misrepresent the questions involved.
Sylvia Gosh that is awful! And you are right of course – there is hysteria. But you know I think physicians in the UK suffer an enormous loss of trust and confidence from the general public whenever rare individuals within the profession do heinous things. I am thinking of Dr Harold Shipman. (For our non UK members, he was a family doctor who was merciless in killing numerous patients, we will never know the exact number, before taking his own life in his prison cell). There have also been recent injustices exposed within the healthcare system itself – in hospitals and also in the legal system. Systems and people are imperfect and again from my own perspective it is the health care communication process which really needs attention. Patients and families are suffering – and health care workers. This was my life’s work and to my regret I have yet to publish the book on ‘how to break bad news’. At present there is little in the way of evidence based medicine on the appropriate way to break bad news to patients and family, but one thing we know is that it is certainly not a one time activity – it is a process. At the moment physicians and others are taught how to break bad news by employing ‘received wisdom’ on the best way to do it and this evidently isn’t good enough. I feel for all involved (how many times have we heard that over the last few days/ weeks?) As a member of a medical faculty I might be expected to be supportive of the medical team – and I am of course. BUT, I have experienced first hand the inadequacies of health care on both continents. I do not think these ethical decisions should be made primarily by the health care professionals when patients and care givers disagree. The health care professionals can give a medical expert opinion but of course there is more to the person than the body – and in this respect physicians and other health care workers are sometimes no more expert than the compassionate layperson. To address this deficiency in clinical medicine education there has been a movement (over the last couple of decades) to improve physician formation and clinical practice. We now use terms like ‘whole person medicine and patient centred medicine and family centred medicine’ – but we are still in the process of trying to define what in practice that means and how best to teach it. There is also the problem that when the learner is in the clinical environment the technical demands of the profession leave little time for any humanistic approach. Medical ethics education is also in its infancy and as medical advances proliferate it is proving almost impossible to keep up. Most of this person centred medical education is best done at post graduate and in continuing education environments when the physicians can share practical lived experiences and not just talk about medical ethical dilemmas at the theoretical level. One thing is certain – there were several medical ethicists (and eventually lawyers) involved at each stage in the decision making in this sad situation with Charlie – the numbers of these experts increasing as the situation became more complex. I so applaud the much needed open debate whilst agonizing as we all do for those who are on the front line. Yes, some of the loudest objections within the public domain are from mean spirited hysterical individuals looking for someone to blame – and anyone who tries to offer a balanced perspective can be attacked – but I believe there are others amongst the public who are thankful for the bravery of all involved, especially the parents and family, because there are other families out there who wish they had spoken up when they lived through their own personal tragedy. This case has opened a lot of wounds. Please God the reflection and debate will continue long after Charlie is in Heaven.
Julia Most of those I’ve seen who wanted to keep Charlie’s body functioning really didn’t know beans about the medical issues involved. They chose to frame it in terms of a handicapped life being not worth living to those who said let go of Charlie versus those who think all life is sacred. This in the US.
Deborah Julia, yes I agree that is how some – even eminent bioethicists – have seen this. But it really is not that sort of question. I think quite early on it must have been clear that this was a terminal disease needing appropriate active management, not inappropriate care. In paediatrics there is NO question that a disabled life is worth less than any other life or that the quality of a life with even very severe disabilities is less. Much of the work of community paediatricians is with children with very severe intellectual and physical disabilities and their families. Of course acceptance when the process of dying has begun is the most difficult – for everyone. Families devastatingly and most severely of course, but often for medical professionals also.
Julia Deborah, it’s got to be extremely painful for doctors and nurses to know there is nothing really they can do but palliative care – which certainly is not nothing, it’s very important – but with children and babies one wishes for more. A life cut so short. It’s easy for me to think I know what I’d do but in point of fact I don’t. I’ve never had to make such a decision. Doctors have saved my life (asthma as a child) so often, or at least kept me alive and healthy, that I tend to trust what they say. I cannot blame the parents but I do think their decision was wrong. Thanks again for all you’ve taught me here re this and other medical issues.
Olive I don’t see any kind of open debate. I see ‘pro life’ types who aren’t so much angry with the medical profession as intolerant of the slightest disagreement and responding to it with the vilest abuse imaginable. This sad case has demonstrated what lies just beneath the surface of the pro life movement and it is not pretty
Deborah Yes – I see very odd versions of pro-life put forward. Well, odd to me anyway.
Cora I was at a mitochondrial conference in Holland last year and became extremely concerned by the pharma–scientist–medical ‘conflicts of interest’. I have mitochondrial disease – suspected. One eminent doctor–scientist–researcher was explaining in highly technical detail, much of which I did not understand, that he was working on some aspect of mitochondrial disease. However, when asked a question from the floor about his work – from another doctor – he replied he could not answer the question as he was ‘under contract’ to a pharma company. In years past the medical scientists SHARED knowledge in the interest of patients. It worked to advance medicine for the BENEFIT OF THE PATIENT, now doctor-scientists are NOT sharing as much for the BENEFIT OF BIG PHARMAs. I find this very scary indeed. if this doctor-scientist had new knowledge surely he was DUTY BOUND ETHICALLY to share with his fellow world-wide compatriots. Big Pharma has totally disrupted science. In Charlie Gard’s case the treatment the ‘professor’ said that he could offer was not based on Charlie’s medical evidence, which he had not seen, nor had he visited Charlie, but rather, I suspect, just because Charlie was a useful experimental dying child! I think GOSH did everything right. I think the ‘professor’ manipulated the parents into a ‘false belief of cure’ for HIS OWN experimental purposes. A belief based on nothing. The drug had never been trialled on Charlie’s form of Mito. GOSH were right to prevent this.
Deborah Yes, I think that’s the situation. I must say the GOSH statement on this speaks volumes. It is written with such attempted diplomacy – but it totally fails to conceal the incompetence (or worse) of the US Dr. Yes mitochondrial disease is a vast spectrum – with some single organ adult diseases at one end and rapidly fatal in infancy encephalomyelitis at the other.
Violet In about 1969 there was a problem with some intravenous fluids in the UK and stocks were recalled. We therefore had to use some meant for export to America. I was only a teenager, but was very shocked upon opening the first box. On top of the bottles were instructions to be followed by emergency room staff. The first thing was ‘Check the insurance’ – are they entitled to care?’ Informing a doctor was number 5 on the list. About three years ago my daughter was admitted to our local hospital after a haemorrhage . She walked in, but within about three minutes we were told that she had no discernible pulse or blood pressure. No one questioned her need or her entitlement. Young people often collapse suddenly like this after a bleed, whereas older folk fade more slowly. They were so kind, but also so efficient. No time to get bloods cross matched, but she was pumped through with a substitute until blood could be safely given. 15 minutes later she was sitting up and talking. Only then did anyone ask anything beyond ‘What is her name’. She would not have survived if anyone had followed the American rules.
Hazel Death is not defeat. I am terribly sad for these parents. I understand (to the extent that I am able to understand) that they will do anything possible to keep their beloved child with them. But the American approach – defeat death at all costs – is only likely to add expense for the parents and suffering for their child. We can ponder forever why such things happen to good people and innocent children, but their child will die. It’s out of their hands. I hope they can find peace, rather than defeat, in that fact.
Deborah Hazel, this is such a true important but difficult message. And of course one CANNOT ever defeat death. Once can keep a dead person breathing for a while (as in some forms of organ donation) so it looks like they are alive – but they are not.
Hazel I have never lost a child, Deborah. I can’t imagine their pain. But their child will die. Nothing will change that fact. I hope they can find strength in the decisions they must make, and in the time that remains to them.
Julia Deborah, since we can keep bodies functioning – a good in the case of organ donation – but I wonder about some bodies in irreversible coma – has God called them home and we are hanging on to the husk?
Ruth Hard to say this too, because there are so many ways of being a fully alive person, but a baby with the kind of extensive and permanent brain damage that little Charlie Gard had suffered would need total, unremitting care for his whole life. I look at those young parents with so much of their own lives still to live, and so much courage and determination and love and hope, and I think what they would have been like after twenty, thirty, forty years of caring for such a profoundly disabled and utterly dependent child at a time when there is less and less social care and public support for such parents. It’s hard to over-estimate the strain that puts on even the most loving marriage and the most dedicated of parents. Of course, had he survived they would have done it, but those amazing human qualities they have shown during this struggle will be wonderful gifts when they become parents of the future children I pray they have.
Julia Ruth, my daughter worked with people with IQ s in the 10-30 range – very severely disabled. Mostly they were cared for by only one parent, usually the mother, though she had one great dad – in that case the mother had left. Most of these could move around, most did not talk or only a little, hard to understand. If this causes enough pain and difficulty that marriages end, think of how much more difficult an even more severe disability might cause. That is not an excuse for non treatment, just a fact.
Deborah Well Julia – there are lots of different medical states included in that group. For organ donors – they are dead of course – no brain stem. Now there is a condition of persistent vegetative state – PVS – like Tony Bland. He was – probably – not aware because he had damage to his cerebrum, but he had a functioning brain stem – so by our usual criteria was not dead. This had been his state for years – he was in the Hillsborough disaster where he sustained his injury. In fact he was breathing on his own, not on a ventilator. So the case was taken to court – the court decided he COULD die by the withholding of food and hydration. Now I’m not sure that was the best decision. However it does mean that in England people in that sort of coma can be allowed to die. With children like Charlie the problem is not just his cerebrum but his whole body – many organs affected. So really life cannot continue to be sustained – he is in the midst of a long ‘process of dying’. If someone is in a coma, but has no other organ damage and a functioning brain stem, then certainly there is some chance they may recover at least partially. So initially at least one would have hope.
Deborah Yes Julia – this is true. I think one of the central points of our religion is that life is tough for many people. One thing I would say is that of course families naturally love their child unreservedly – and this is no less the case for children with severe disability.
Deborah Ruth, I actually don’t think it was ever a possibility that this little boy could have had a life with profound disability. I think for him in all probability life was always going to demand increasing levels of intensive car – as his organ damage became more severe and at some point become impossible. Intensive care itself is by no means benign and causes organ damage as it can never duplicate the situation in health. This is not like the situation in severe cerebral palsy. This is my supposition based on my knowledge of other children with other similar problems.
Ellie I agree Deborah. It’s amazing what some children/adults with severe CP can do – with appropriate support and teaching. Children who have other conditions such as severe brain injury sometimes retain awareness but can’t express it or have small areas of residual vision. I never gave up on a child but even those with the most severe difficulties didn’t have the multiple and progressive damage of Charlie. It’s not fair to such a child who is likely to be in pain, possibly terrified and is deteriorating.
Cora The real tragedy is Charlie was always going to die. The disease is catastrophic , no cure and hugely complex. To raise the ‘false hopes’ by the American professor was WRONG, WRONG, WRONG. I am seriously raging with that professor. There was NEVER a shred of evidence that the drug he proposed would cure Charlie. He fed a big lie to huge numbers of supporters, who for a bizarre reason believed HIM and not GOSH. How did the frenzy over Charlie get to this level? Who funded this? The pharma companies? How did an ordinary couple with a dying child garner this publicity and media attention? It was billed as ‘GOSH won’t save our baby’ sort of thing. It was virulent against GOSH, staff receiving death threats, being accosted in the street amd in the hospital. The only good thing to come out of it is people have now heard of mitochondrial disease. But they still don’t know a) there are huge variations in mito disease; b) it’s so far incurable; c) it affects children AND adults. Someone exploited this child, and the parents and I don’t like it one bit.
Julia Oh my! Yes. You have said what I’ve been too chicken to say.
Cora Someone ‘nurtured’ this family. whether it was solicitors, media, pharma companies or genetic researchers it STINKS of exploitation. They were USED.
Ruth Isn’t it called “grooming” in other contexts?
Cora I have a very rare neuro-muscular degenerative disease. I was urged to be part of the UK 100,000 genome project. it was SOLD as a wonderful exercise and what do you know – its a blooming chaotic MESS. The trouble I’ve had is unbelievable. I was told the genetic defect for my rare disease might be found. It wasn’t but now I know they did NOT do the full genome panels anyway! so I was sold up a ‘hope’ river by researchers. We were fodder for research and the DOCS lost sight of us as PATIENTS. The emotional and psychological damage of the dashed hope is enormous, and the arguments with the specialists has destroyed the therapeutic endeavour. THIS is what is happening in the RARE diseases cohort of patients. We are rare, interesting subjects, we become specimens in the petri dish!
Constance Speaking more broadly than the Charlie Gard case, they don’t seem to realise it but the Pro-Lifers are responsible for all the (seemingly ever increasing numbers of) people who are pro-euthanasia. There is a point at which it is ‘wrong’ to continue active treatment. Thankfully the number of doctors who see death as failure and keep treating is slowly starting to decrease, but there is a way to go. Personally, I think it gets to a point where artificial feeding and hydration become ‘excessive’ treatment. I watched my mother refuse both food and water until she had a naso-gastric feeding tube and an IV drip. I didn’t have it in me to fight that fight with the hospital staff and to educate my siblings as well. I wish I had – but again, that is an example of those nearest not being able (for whatever reason) to act in their loved one’s best interests. To me, saying it is horrific to remove artificial food and hydration is like saying (for those who had babies way back then) that you couldn’t let a baby sleep, they had to be woken 4-hourly and fed. If you were brave enough to defy the baby rule, you saw that it wasn’t true. Few people see the other rule. I can only offer the example of a dear relative who died at a great age 12 months ago. She was in a Catholic care home and the nuns looked after her beautifully. When she ‘had a turn’ they basically let her ‘sleep’ until she died 10 days later, disturbing her only to wash her, change her nightie, change her sheets. No food or fluids. And no distress. The rush to treat and the reluctance to stop treating mean people don’t see the body shutting down naturally. I don’t agree with euthanasia but I can see why so many people are demanding it. (And few people who say ‘palliative care doesn’t work’ have any idea what real palliative care is and only think of ever-increasing doses of morphine.)
Victoria Thank you Cora for sharing your experience which I know I will be coming back to strengthen my resolve in coming time. So happy to hear of the experience for your dear relative. We still have too little knowledge or shared experience of what is possible.
Judith Thank you for writing this. Artificial feeding and fluids ARE extraordinary measures if the body can not survive without them. If a person is otherwise so impaired that these means are the only thing keeping them alive, then yes they CAN be (NOT MUST BE) discontinued. Someone made a point the other day about Christopher Reeves, who was in a wheel chair, on a vent and probably used artificial feeding. But his mind was still alive, he could still communicate. When ALL of that is gone, then I believe we are only keeping a body going not the person.
Cora But then we have the ‘austerity’ camp – who are not treating to save money – and I fear THAT is another issue. Hospitals are struggling with the costs of often expensive treatments that DO work and I think some doctors are saying ‘NOT WORTH IT’ based on economy or disease process or age. I fear my non-treatment is due to my age (64).
Deborah Well, I don’t think doctors can decide not to use certain treatments – but the NHS certainly can and does. This usually applies to treatments that do not seem to give benefit when tested. I do not think that age is ever a factor in the NHS though.
Cora Don’t be so sure – I used to think ethics were sound, i no longer do.
Corina I was just thinking about this. The US has a weird view of the UK and Europe: a touristy envy, but also a kind of suspicion, perhaps an inferiority complex? The bizarre assertions l heard – from educated people! – about the UK trying to ‘normalize infanticide’ suggest to me that we have here both a very toxic ‘pro-life’ ethos, and a fear and suspicion of countries where socialism is working.
Julia Oh yes! But that is only the alt right, religious right types.
Corina Add to this the irony that many of the same people uttering these bizarre statements are a) voting to cut funding for medical care for poor families, and b) opposed to accepting refugees whose lives truly could be saved, if we accepted them. The deep-down values at work here are not, in reality, in defence of life.
Fiona There is a question, I think, about the ‘right to life’ when, as in this case, the life depends on technology – a ventilator – to maintain it. If Charlie had not had access to the high-tech medical care offered at Great Ormond Street, if he’d been born in rural Africa, for instance, he would have died long ago. The question is for how long should life be artificially maintained, and when should nature be allowed to take its course, and the patient be allowed to die? It seems to me that this is also a question those of us getting older and approaching death should be asking ourselves. Not in terms of what I am entitled to in the way of health care, but more seriously, should I expect or require costly drugs or technology to maintain my life when it has come to its natural end? A new kind of conscience matter ….
Deborah Fiona, well – there is clearly no absolute right to life, no absolute right to healthcare or to any particular form of healthcare. Obviously none of this can be guaranteed. Of course one matter is that you may decide that – if the time came that you were very ill that actively wish NOT to receive it – and this is a problem if you are not competent at that time. This is the purpose of advance directives. But I think in England long term ventilation for a worsening situation for someone who can never recover is seen as very unethical and very much not in that person’s best interests
Fiona Deborah, That is what I thought – thanks for clarifying.
Lillian Even though have used physician for years, I have to be seen by him for any new Rx. And never diagnose over phone. It seems to me if patient is older, less chance of extreme measures in ICU.
Constance There are some occasions when even being sent to ICU is over-treatment.
Lillian Saw them give up on one elderly friend and he died. Another elderly was given up on after stroke and he made complete recovery.
Chloe Fiona and others who have touched on this ‘right to life’ issue – here in the US it is the parents who will make decisions for their child. If they are fanatics and do not seek medical care for their child (i.e. belief in laying on the hands and refusing to take ill child to hospital) the social services will remove child from home and treat child. Child Protective Services (CPS) work very close with schools too. This brings to mind another issue and that is immunizations. Yuppy parents now are not immunizing their children and it’s caused a resurgence of diseases (and deaths) that were almost eradicated – whooping cough, chicken pox etc. and child deaths. I’ve heard that US over immunizes compared to Europe. Also UK has difference with birthing practices and midwives. These differences in my view are more related to insurance companies, doctor’s salaries and money. America was moving towards socialized medicine with previous president and now current president wants to abolish all the progress he made. Ultimately though I do think US and UK are alike when it comes to these very sensitive and ethical health care decisions, it is considered a private matter and the parents’ right. I see people withdraw care all the time; remove a loved one from ventilator, refuse surgery or chemo for cancer, etc. I personally have a daughter who incurred brain damage when I delivered her. It has been a rough journey, and regardless of whatever religious ideation one has, I have put my two feet and hands forward and worked to support myself because no church or government group has ever supported me. In the Dark Ages it was considered these misfortunes occurred because of sin/family sin, but we know better now. I believe we live in a very imperfect world and no matter man’s control ill events will still occur and we should love these children and one another and encourage each and help each other. There are no answers for many things that occur in life.