Universal Deathcare.

[Kyrshamarks]

So those that support Universal Healthcare and how great it is care to explain to us how it was great for Alfie Evans? Hopefully not coming soon to the America near you.

[Coffee Nurse, BSN, RN]

Thanks, Kyrshamarks for opening a realistic conversation about the topic of government controlled healthcare.

Alfie's case (nor the other little boy earlier this year, whose name I can't recall) was NOT about preventing a slow painful death, or even about allocating money to patients most likely to benefit from treatment (at the expense of those not likely to benefit). If it had been about either of these things, there would have been no objection to the parents taking Alfie out of the country at their own expense for evaluation and possible treatment elsewhere. But that was not allowed. They weren't even allowed to take him home.

This. was. all. about. control. And if we allow our government to fully fund and dictate healthcare, it will happen here.

This is a false conflation. As MunoRN said, it was the judiciary that decided Alfie's fate, and that of Charlie Gard before him. Fortunately I was never involved in as desperate a situation as this during my time in the UK, but if our team of attendings had reached a point of absolute impasse with parents, they would have appealed to the courts, not to the government. And the government, for that matter, is only involved in the healthcare system in the broadest, financial sense; it is not involved in any way in patient care decisions.

In Alfie's case, the question was about prolonging futile medical interventions in the face of irreversible, catastrophic brain damage. For Charlie, his parents wanted to take him abroad and subject him to treatment that amounted to human experimentation, also in the context of severe brain damage. In neither situation did the parents' wishes align with what was in the best interests of their children, as loving and well-intentioned as those wishes were.

This next statement is not meant as a slam to the British. It is meant as a warning to us: I find it utterly inexplicable the extent to which people will willingly relinquish control of decisions pertaining to their own health, safety and well-being in exchange for the mistaken notion that they are not responsible for payment for the goods and services they receive. I am also dumbstruck by the number and seeming intelligence of people who think that because a bill does not arrive in their mailbox, they are receiving something for free.

Every tax-paying UK resident is well aware of the portion of their paycheck that goes to fund the NHS. What they are spared is the financial devastation that an unexpected diagnosis can inflict (Alfie spent 16 months in an ICU, can you imagine what that would have cost his parents in the US?). If anything, the single-payer system empowers people to explore every available avenue of care, if indicated, since they do not have to worry about how they are going to pay for it.

[TriciaJ, RN]

Thanks, Kyrshamarks for opening a realistic conversation about the topic of government controlled healthcare.

Alfie's case (nor the other little boy earlier this year, whose name I can't recall) was NOT about preventing a slow painful death, or even about allocating money to patients most likely to benefit from treatment (at the expense of those not likely to benefit). If it had been about either of these things, there would have been no objection to the parents taking Alfie out of the country at their own expense for evaluation and possible treatment elsewhere. But that was not allowed. They weren't even allowed to take him home.

This. was. all. about. control. And if we allow our government to fully fund and dictate healthcare, it will happen here.

This next statement is not meant as a slam to the British. It is meant as a warning to us: I find it utterly inexplicable the extent to which people will willingly relinquish control of decisions pertaining to their own health, safety and well-being in exchange for the mistaken notion that they are not responsible for payment for the goods and services they receive. I am also dumbstruck by the number and seeming intelligence of people who think that because a bill does not arrive in their mailbox, they are receiving something for free.

God rest that precious soul. And the next. And the next after him.........

Thank you. Because I can understand why the British government was not willing to throw more money on a hopeless situation. What I can't understand is why the parents were not allowed to take their own child to Italy at the invitation of the Italian government. That part makes no sense.

[brownbook]

Thank you. Because I can understand why the British government was not willing to throw more money on a hopeless situation. What I can't understand is why the parents were not allowed to take their own child to Italy at the invitation of the Italian government. That part makes no sense.

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?

[brownbook]

I worked ICU 5 years, and supervised 5 years after that. Thank goodness it was mostly old people. I called it the "torture old people till they die" unit. Any nurse who has worked bedside ICU I would think, hope, imagine, knows they would never put their child through what Alfie was put through.

[KatieMI, BSN, MSN, RN]

What I can't understand is why the parents were not allowed to take their own child to Italy at the invitation of the Italian government. That part makes no sense.

Because doing so on a child in "semi-vegetative condition" (and with therefore potential for feeling at least pain) would mean torturing the child with absolutely no other prospective except to continue the torture for the sole sake of of his parents' pathologic grief.

To not let someone with incorrectable, incurable, painful condition with no quality of life now and in the future to die in comfort and peace because you just don't want it to happen is just that - pathologic grief. It is a known alteration of mental health, and persons suffering from it should get appropriate professional help. But their wishings and wantings should be catered to only for strict limits, and, of course, nobody should suffer in silence of vent hookup only because they wanna that.

[cayenne06, MSN, CNM]

My heart goes out to this family. I have been infuriated by most of the media coverage here. This case has NOTHING to do with universal health care coverage. Zero. It's about the rights of the parents, the rights of the child, and the rights of the doctors and nurses involved in his care. That's the debate.

Because doing so on a child in "semi-vegetative condition" (and with therefore potential for feeling at least pain) would mean torturing the child with absolutely no other prospective except to continue the torture for the sole sake of of his parents' pathologic grief.

To not let someone with incorrectable, incurable, painful condition with no quality of life now and in the future to die in comfort and peace because you just don't want it to happen is just that - pathologic grief. It is a known alteration of mental health, and persons suffering from it should get appropriate professional help. But their wishings and wantings should be catered to only for strict limits, and, of course, nobody should suffer in silence of vent hookup only because they wanna that.

Agreed. NONE of us know all the facts in this case so I hesitate to voice an opinion. But it appears there is a strong medical consensus in this case.Parents *do not* always know what is right for their children when it comes to medical care. The well being of the child should always come first- and sometimes that means withdrawing care.

[KatieMI, BSN, MSN, RN]

If anything, the single-payer system empowers people to explore every available avenue of care, if indicated, since they do not have to worry about how they are going to pay for it.

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.

[cleback]

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.

Those are pretty significant barriers. I'm surprised that you seem annoyed by patients voicing some legitimate concerns. Is what you describe truly accessible care then, one that is hard time find except by hours of searching, with many administrative hoops to jump through, having a high health literacy a prerequisite not to mention good mental health/social/economic advantage to be compliant with healthcare recommendations, and geographically distant? My god...

And in one my jobs we enroll patients in studies to complete therapies that cost 60k-80k for three months. We have patients that ask to be on these studies for years. Frankly, I think it's pathetic. I do not listen to the advantages of universal healthcare, with countries so clearly surpassing us in every health indicator, and think to myself, "Well, at least we have experimental drug/therapy trials!" I mean, really...

[Wiggly Litchi]

Actually, I think it was "great" for him. He had no quality of life and no hope of becoming well. Death is not always the worst outcome.

I completely agree with you!!

One of my professors gave me an amazing book to read: Atul Gawande - Being Mortal. It was an amazing read, and I wish more people would check it out.

On the topic of universal healthcare; I'm British and I moved to the USA when I was 21. It has its perks for sure, like I love the fact that if I got hit by a bus or a drunk driver, I'd have no bill at the end of the day. My wages were garnished each paycheck to cover 'national insurance' - so technically the care isn't free, but you do pay a small amount from each paycheck toward that care.

The wait lists can be kinda crappy though as my dad had to wait 2 weeks to have a transverse fracture of his left humerus plated :/

UH still has its limitations and isn't a perfect system, but I do miss it. I don't enjoy dropping $80+ on an inhaler. . .

[Not_A_Hat_Person, RN]

Plenty of American for-profit hospitals would have disconnected Alfie Evans sooner. At least in the UK the decision did not depend on his insurance.

[Tenebrae, BSN, RN]

Oh, don't even START. This had nothing to do with universal healthcare and everything to do with an utterly tragic situation with grief-stricken parents who could not accept their baby boy's reality, combined with uninformed masses seizing on one side of the story and reacting in an appalling manner. I worked in a NICU in the NHS for the past six years and we encountered several of these situations, where the humane thing to do was to let the baby go peacefully and the parents were simply unable to accept that. Money was NEVER a consideration when deciding the appropriate course of treatment, only the best interests of the baby - which, sadly, sometimes conflicted with what the parents wanted.

Yup.

I hear so many people say 'its the parents right to decide, not the courts". What about the childs right to not be kept alive under any circumstances with no quality of life.

I also work in the public funded health service, and I can honestly say money has never been an issue with providing patient care. The opposite infact, as long as I can provide a sound clinical reason as to why something is needed for a patient, my manager will order it.

Example, 2 weeks ago, I found that a patient needed a particular bit of equipment. We had several however they were already in use.

Spoke to my clinical manager who spoke to the facility manager, explained why it was needed and the patient had the piece of equipment by the end of the week

Is our system perfect? Not by a long shot, however titles like the OP smack of dramaqueenism which really dont help contribute to an open honest discussion

[Tenebrae, BSN, RN]

....

This. was. all. about. control. And if we allow our government to fully fund and dictate healthcare, it will happen here.

.

Nope

I've worked in a similar system for the last 6 years as an RN and over 20 years in other various health roles.

Never once had the government interfering in any patients healthcare