Universal Deathcare.

MunoRN, RN · Apr 29, 2018

So the parents have no say in what is quality of life for their own children? So the government can determine quality of life?

Of course the government can "determine quality of life", the government frequently intervenes when children are being abused even if the parents don't see it as abuse, do you really feel that's overstepping their bounds?

Not 100% of doctors agreed... and the matter is such that parents should have had a say, NOT the government!

There was not a single doctor that proposed an alternative treatment, even the Vatican Hospital's doctors conceded that there were no treatments that could have allowed Alfie to improve.

[ATTACH=CONFIG]26819[/ATTACH] First Charlie Gard, now Alfie. This is what government involvement in healthcare looks like. Death panels do exist, and it should not be up to a judge or a hospital to deny proper care. Those arguing to justify the cold blooded murder of Alfie, I hope your loved one is never kept prisoner in a hospital system due to government involvement where you are forbidden to take your loved one home or to another safe location.

You're correct, it shouldn't be up to a judge or hospital to deny proper care, they should be advocating for and providing proper care, which is what they did in this case. Why do you feel that continuing to provide invasive, potentially tortuous treatment when there is no potential benefit is "proper care"?

DaveICURN · Apr 29, 2018

Parents don't have "full decision making capabilities in the US", it actually works the same exact way here. Hospitals and their ethics committees can determine that futile care is not appropriate and make the decision to withdraw care against the parents wishes, parents can appeal that decision in court just as the parents of Alfie Owens did. This is not particularly rare in the US, it's been about a month since my hospital had to take legal steps to bring futile and tortuous treatment to end in a child.
There were no "experimental treatments" offered, no additional treatments were proposed by the Vatican hospital, doctors from the Vatican hospital who travelled to Liverpool to evaluate Alfie agreed that his condition was not curable and other than palliative care they did not suggest different treatments would be available to him in Italy.
Denial and bargaining are well established steps in the grieving process. Appropriate care does involve helping ensure that the grieving process doesn't result in abuse of the child.

On reflection, and further research, I will concede the points as you have presented them. I feel I fell victim to the same emotional argument. These situations, as I have experienced them, are always the hardest conversations. My second month in we gave a swaddled bundle to the parents after a 45 min code. 8 months old. Coxsackie virus.

While i'll still advocate for second opinions and review of symptoms, I do understand the need for the hard truth to prevail.

It's these conversations I love AN for. Thought provoking and personally challenging.

Thanks Muno as always.

SpankedInPittsburgh, DNP, RN · Apr 29, 2018

Thomas Jefferson, John Adams, George Washington, et al. would agree with this assessment.

I read the "Federalist Papers" years ago & am a certified history nerd and they agreed on very little except that this country should have its independence. One of their disagreements that they never did settle was the issue of slavery. It would bite the country in the butt some years later to the tune of a million or so deaths in a country of 31 million. I'd count on the strong federalist (nationalist) Adams to be for a centrally run healthcare system while Jefferson (states rights) being strongly against it with George in the middle trying to keep these two from strangling each other.

MunoRN, RN · Apr 29, 2018

On reflection, and further research, I will concede the points as you have presented them. I feel I fell victim to the same emotional argument. These situations, as I have experienced them, are always the hardest conversations. My second month in we gave a swaddled bundle to the parents after a 45 min code. 8 months old. Coxsackie virus.
While i'll still advocate for second opinions and review of symptoms, I do understand the need for the hard truth to prevail.
It's these conversations I love AN for. Thought provoking and personally challenging.
Thanks Muno as always.

I think it's far more nuanced than most people make it out to be, including myself. Not even the Catholic Church which is usually pretty good about presenting a consensus view doesn't agree with itself. The England and Wales archdiocese has come out and publicly stated they side with the hospital and the courts, which would appear to conflict with the Vatican, although the Vatican's position isn't even clear since at one point they seemed to support transitioning the child to palliative care.

Guest219794 · Apr 30, 2018

I found a well written piece from a nursing perspective on wrongfully prolonging death and suffering in out modern medical system.

Very relevant to this case.

"These are many of the people that are kept in that state between alive and dead in my ICU. These are the people that death would be a comforting end to their struggles and problems, would bring an end to the pain and suffering they have. But yet, we as a society deny this to these people. "

Guest219794 · Apr 30, 2018

Actually, the OP is a long-time member whom I remember from way back - this post is consistent with his stated political views since 2004 when I joined AN. Wrong-headed, in my view, but sincerely held.

I stand corrected.

TriciaJ, RN · Apr 30, 2018

I'm just guessing, but I'd think he'd have to be transported via an air ambulance, on a ventilator, with respiratory therapist, maybe a nurse, etc. Who's going to pay for that? I don't think he could have gone to Italy being held in his parent's arms?

My understanding was that the Italians were willing to pony up for the whole deal.

TriciaJ, RN · Apr 30, 2018

Because the doctors for Rome flew to London, evaluated the child, conferred with his doctors, recognized they could do nothing for him that wasnt already being done, and went back to Rome. They didnt want him flying to Rome, as they couldnt do anything for him.

Thanks. That clarifies it further. The news story left out that last bit. I'm glad someone did start this thread. There's always more to the story.

Susie2310 · Apr 30, 2018

Actually, I think that private pay system has more options for patients to explore. Most people are just not smart enough to find and use them and not brave enough to accept even the minor inconveniences, honestly.
For example, enrolling into a clinical trial can provide the most advanced, most cutting egde treatment options for free. It is not necessary to have stage IV cancer for it; one just has to search and find, say, a trial of one hip prothesis vs. another. But doing so involves long hours of search, lots of communication, understanding of care plans, being compliant with care (and usually hustory of being compliant as well) and, oh my God, traveling somewhere "where I do not have any family and do not know nobody" (standard argument I hear from many patients I refer to advanced tertiary care). Not many patients are ready to accept all that even to begin with and not yet speaking about unavoidable risks.
On the other hand, my British friend was told that the specific protocol for her aggressive form of breast cancer, only recently released from "experimental" status at that time, was not available in any clinic in Great Britain unless she would "wait for a few months". Since she had already waited half a year to do second mammogram after the first one came back with a spot and then another few months for biopsy while getting her cancer from "localized" to "primarily advanced" stage, and the chemo protocol which promiced the best possible outcome had to be started at the time of surgery, she had to go to Germany for everything. Luckily, she had private insurance as well and also had miltiple connections in academic circles which helped her to get enrolled in clinical trial of even more advanced therapy, which was successful.

Private pay undoubtedly has options for those (a small minority) who can afford to pay privately. In the real world, affording insurance and finding a physician who will treat them is a big enough challenge for most people. I wouldn't call not being able to afford to pay privately or being too sick to have the energy to research all possible treatment options not being smart - that is an ignorant, small-minded comment - you really should take your resentment towards your patients somewhere else, and please be realistic, do you really expect infirm/sick/very sick people to separate themselves from their support systems and establish themselves across the country in a hotel room so they can undergo an experimental procedure, all by themself without their family, even if they could financially afford to do this? You sound as though you are very unsympathetic towards your patients. I'm sure they are thrilled to have you for their provider, with an attitude like yours. I wonder why you don't find another position where you don't have to provide direct care; perhaps research would suit you better.

BedsideNurse · Apr 30, 2018

The NHS costs a fortune. Importantly, it is "free at the point of service," not free. A 21% VAT tax on almost everything you buy means it seriously impacts what you spend every day. That percentage will likely continue to go up as costs continue to rise. The VAT tax was 17% not that many years ago. The UK government also takes money out of your paycheck for National Insurance (National Insurance helps to fund the NHS as well as pay for unemployment+disability benefits and state pensions).

Despite massive taxation and fees, the NHS is broke. Nurse patient ratios, outside of the ICU's, are often *much* worse than the U.S., and they are certainly not better. There is often a waiting time of many, many months for non emergent surgeries (hysterectomy, joint replacement), psychiatric care, and even to get a CT. Doctors are generally poorly paid and nurses with 20+ years experience --top pay-- is about the equivalent of 25 dollars an hour, and that's if you are willing to float all over, and work in London. In rural areas experienced nurses make the equivalent of 14 to 16 dollars or so. (Of note, it matters not what the exchange rate is to the U.S. dollar. If you live in England 20 pounds spends about like 20 dollars does in the U.S., but probably a little less due to higher costs of living due to the housing shortage). We can't afford the nightmare of Obamacare, and we certainly can't afford anything like the NHS. Partly because a large portion of our population would end up not paying for any of it, while the rest of us would pick up the tab, unless we had a substantial VAT tax, which I doubt would happen here. Seeing how we have over 5x as many people than the U.K., the financial burden for the average worker would be incredible. Thanks but no thanks.

MunoRN, RN · Apr 30, 2018

The NHS costs a fortune. Importantly, it is "free at the point of service," not free. A 21% VAT tax on almost everything you buy means it seriously impacts what you spend every day. That percentage will likely continue to go up as costs continue to rise. The VAT tax was 17% not that many years ago. The UK government also takes money out of your paycheck for National Insurance (National Insurance helps to fund the NHS as well as pay for unemployment+disability benefits and state pensions).
Despite massive taxation and fees, the NHS is broke. Nurse patient ratios, outside of the ICU's, are often *much* worse than the U.S., and they are certainly not better. There is often a waiting time of many, many months for non emergent surgeries (hysterectomy, joint replacement), psychiatric care, and even to get a CT. Doctors are generally poorly paid and nurses with 20+ years experience --top pay-- is about the equivalent of 25 dollars an hour, and that's if you are willing to float all over, and work in London. In rural areas experienced nurses make the equivalent of 14 to 16 dollars or so. (Of note, it matters not what the exchange rate is to the U.S. dollar. If you live in England 20 pounds spends about like 20 dollars does in the U.S., but probably a little less due to higher costs of living due to the housing shortage). We can't afford the nightmare of Obamacare, and we certainly can't afford anything like the NHS. Partly because a large portion of our population would end up not paying for any of it, while the rest of us would pick up the tab, unless we had a substantial VAT tax, which I doubt would happen here. Seeing how we have over 5x as many people than the U.K., the financial burden for the average worker would be incredible. Thanks but no thanks.

In general healthcare is very expensive so you could correctly say that "the NHS costs a fortune", however the NHS is actually far cheaper than our system and if anything they could use to spend a bit more.

The per annual capita cost of healthcare in the developed world ranges from about $3000 to $5000 with the UK spending about $4000. The US is way, way out of that range at about $10,000 per person, and for that we have generally worse healthcare outcomes. Wait times for surgeries, tests, etc aren't actually significantly different between the US and the UK.

It's not really a question of whether we can provide healthcare to everyone since we're already doing that, just in the dumbest way possible, we guarantee treatment of every medical condition but only once it's gotten really, really expensive to treat. It's a matter of how do we keep costs down or at least slow it's inflation as medical treatment advances, and making sure everyone is paying their fair share.

BedsideNurse · Apr 30, 2018

In general healthcare is very expensive so you could correctly say that "the NHS costs a fortune", however the NHS is actually far cheaper than our system and if anything they could use to spend a bit more.
The per annual capita cost of healthcare in the developed world ranges from about $3000 to $5000 with the UK spending about $4000. The US is way, way out of that range at about $10,000 per person, and for that we have generally worse healthcare outcomes. Wait times for surgeries, tests, etc aren't actually significantly different between the US and the UK.
It's not really a question of whether we can provide healthcare to everyone since we're already doing that, just in the dumbest way possible, we guarantee treatment of every medical condition but only once it's gotten really, really expensive to treat. It's a matter of how do we keep costs down or at least slow it's inflation as medical treatment advances, and making sure everyone is paying their fair share.

A couple of things, nearly anything coming from The Guardian is false until proven otherwise. Lol.

Well, maybe that's an overstatement, but they have a perspective that makes me question their numbers in a serious way. (So the average person in Boston waited 66 days to get an appointment to see their primary care doctor. Okay, well, probably not). Also, I lived in the UK for a number of years and from what I observed on the ground was that wait times were worse for things like CT scans, elective surgeries, physical therapy, & seeing a consultant. You might have been able to get into your PCP office a little quicker, but otherwise wait times for care and treatment were delayed and this seemed to be the rule vs. an uncommon occurrence. Again, the pay for health care workers was terrible. American nurses would lose their you- know- what if they were had to work for the wages over there.

That aside, I'm curious why you think the government offers a smarter way of doing things, if driving costs down and improving services were the goal. Those aren't the characteristics I would associate with Big Government. I can't think of anything the government has taken over that saw costs diminish and quality improve. You must have a lot of faith. Maybe my husband's near 40 years of working for the federal government has worn the luster off, or maybe watching one too many Congressional hearings on waste fraud and abuse has tainted me, but I have no such faith that our government is equipped to fix our health care problems.

I do agree with you that our medical model is flawed. We could drastically reduce costs if we focused and invested in lifestyle medicine, since lifestyle is the cause of most disease, including chronic disease, which drives healthcare costs through the roof. We don't need a single payer system to do that. We'd have to figure out how to create reimbursement incentives for improved outcomes/keeping people well. Also, as it stands, physicians are forced to practice anti litigatory medicine vs. reasonable work up and care. That needs to be dealt with somehow. Mandated care protocols that don't allow for expert opinion is often deleterious to care and wastes resources. Big Pharma is the largest lobbyist group in Washington, by far. That's an issue...There is no shortage of problems, that is for sure. :/

As far as making sure everyone pays their fair share, as you say, that will NEVER happen. That is an impossibility. We should all know by now that paying our fair share actually means a significant portion of the population will pay little or nothing, and will have no skin in the game, while the rest of us will bear the burden of paying for it all. That's Government 101.

It's not that Government agencies don't start with a good intention somewhere, but soon they have their own axes to grind, their own special interests, and they are painfully inefficient due to their bureaucratic nature. This package comes with a bow on top--a near complete lack of accountability.

We have different perspectives for sure.