Patterico's Pontifications

7/28/2017

Charlie Gard Passes Away

Filed under: General — Dana @ 11:50 am

[guest post by Dana]

Charlie’s mother announces her little boy’s passing :

Our beautiful little boy has gone, we are so proud of you Charlie.

Charlie died at a hospice care center. The courts refused to let Charlie die at home as his parents had requested. Even in death, the powers that be determined how Charlie’s parents would say their final good-bye.

May Connie Yates and Chris Gard find great comfort and grace during this season of immense grief. And may a large portion of that comfort be found in knowing that their sweet Charlie has been welcomed home by the angels, and into the loving arms of God.

(Cross-posted at The Jury Talks Back.)

–Dana

19 Responses to “Charlie Gard Passes Away”

  1. The power of the state. Never underestimate it.

    Dana (023079)

  2. John McCain sure never does

    happyfeet (28a91b)

  3. Beautiful baby, rest in peace. My heart goes out to the parents who have experienced the boot on the neck in the most horrific way possible.

    Patricia (5fc097)

  4. Politicizing tragedies like this are sub..no. Inhuman.

    Ben burn (70d425)

  5. this isn’t a “tragedy” it’s the inevitable result of the kind of rationed health care that cowardly John McCain lied to his constituents about opposing

    happyfeet (28a91b)

  6. That judge has obviously never lost a child of his own. To refuse to let Charlie’s parents take him home to die is the most disgusting and cruel thing ever. He has robbed Charlie’s parents of some beautiful memories. Even if Charlie was unconscious the whole time. The thing about the ventilator not fitting through the door is a lot of rot; there are other options to that ventilator.

    Now that Charlie has died, are the parents allowed to take him home?

    All this comes from someone who has lived through the death of a child. But who was fortunate enough to have doctors and nurses who did their utmost to let her child die at home.

    Bh (69a4eb)

  7. There is certainly a particular callousness on the left in terms of child mortality isn’t there? Remember how downright crappy the left was to the Santorum family when they learned that the Santorums had chosen to bring their stillborn baby home to grieve as a family? Some years back I was arguing with a female friend (who at the time was young and childless) and she expressed the sincere belief that women should abort any child who was diagnosed with an abnormality in the womb. She wouldn’t go quite so far as to say they should be required by law to abort (as is commonplace in socialist nations with low infant mortality rates like Cuba), but she thought that the medical profession should exert strong pressure upon the expectant mother to reach that decision. I’ve lost touch with her since she married and started a family of her own, but I do wonder if she still feels that way after experiencing the miracle of birth herself.

    JVW (42615e)

  8. This whole affair was a conditioning of the populace. There was unexpectedly heavy pushback (Thanks be to God), so there was a sliver of bending which allowed for the show hearing. The government did, though, make darn sure everyone understood with the final chapter of this evil odyssey that power and control derives from the State.

    Ed from SFV (3400a5)

  9. It may be that Britain is beyond a tipping point. Or it may be that eventually a pushback will succeed. If so, Charlie will be its patron saint.

    Richard Aubrey (0d7df4)

  10. And may a large portion of that comfort be found in knowing that their sweet Charlie has been welcomed home by the angels, and into the loving arms of God.

    And may a large portion of that comfort be found in knowing that the evil bastards responsible for this have been welcomed home by the demons, and into the arms of their father Satan.

    Yoda jr (310909)

  11. Rest in peace little one.

    I hope he was permitted baptism before passing.

    NJRob (7f4bec)

  12. All this comes from someone who has lived through the death of a child. But who was fortunate enough to have doctors and nurses who did their utmost to let her child die at home.

    Bh (69a4eb) — 7/28/2017 @ 12:45 pm

    You are not alone. As far as doctors and nurses doing their utmost I didn’t experience that until I pulled my wife out of Naval Hospital Yokosuka and put her in St. Marianna’s in Yokohama.

    http://listings.findthecompany.com/l/60733127/St-Marianna-University-School-Of-Medicine-Hospital.

    On her private doctor’s orders. Her private doctor had assumed the USN had better facilities to deal with the problem then she had in her small clinic. She was wrong.

    That was her first mistake, not that I blame her. I had several run-ins with the haughty, arrogant Navy docs, who had first demanded to know where I had gotten my medical degree. Like I didn’t know my kid was dying unless I had a medical degree.

    Relevant to the discussion is they didn’t look for problems such as ours because Yokosuka wasn’t equipped to deal with them. If they had looked that would have likely required the Navy to evacuate us to Balboa in San Diego, which is expensive.

    Suffice to say I’m no fan of government-run health care. I could go into far, far, more detail but it’s best I don’t. To protect the innocent.

    Steve57 (0b1dac)

  13. Steve, thank you for sharing, even though the pain will always be there. Your story can make people grateful in some cases, more vigilant in others.

    This is the real reason the commenters’ section has value. Not the over the top statements, vulgarity, or certitude. No, what makes it valuable is the community that it can create, and the stories—bad and good—that can be shared.

    I will say another prayer on your account.

    Simon Jester (b9e500)

  14. Nous sommes tout Charlie…

    Pat* (a15218)

  15. What gets me in these stories is the final passivity of the parents. Were I this kid’s dad, the verminous stooges that kept me from taking my son to try to save him would need to be looking over their shoulders the rest of their miserable lives. Similarly, some years back a Canadian kid died because his puffed up schoold administration wouldn’t let him carry his asthma inhaler. His mother is working to get that changed. I would be ‘working’ to get close to the idiots responsible with a chainsaw.

    C. S. P. Schofield (99bd37)

  16. Politicizing tragedies like this are sub..no. Inhuman.

    Ben burn (70d425) — 7/28/2017 @ 12:22 pm

    A statement so moronic even happyfeet could blast it out of the water. Actually what you mean is that when inevitable results of government health “care” are publicized the left’s chances of achieving it are diminished.

    The Charlie Gard case was not an outlier. When you have to depend on the government for treatment, and the government decides you aren’t worth treating and therefore wants to free up the hospital bed for somebody worthy of treatment, it wants you dead. Indeed, the government doesn’t just want you dead; it requires you dead. Which was really the entire point of the Charlie Gard case. It wasn’t really about Charlie Gard.

    The parents had raised enough money to cover the cost of treatment in the US. It wouldn’t have cost the government a single pound. But the government wouldn’t allow it because there are now two classes in Britain; ruling overlords and serfs. And the government needed to put the serfs in their place.

    As I said, Charlie Gard’s case is not an outlier. The NHS has an Orwellian habit of using double speak. For instance, the NHS’s death panel (it conducts cost-benefit studies for drugs and other types of treatment) is abbreviated as NICE. It was originally set up as the National Institute for Clinical Excellence. Later it was renamed the National Institute for Care and Health Excellence but kept the acronym NICE. So the people in England and Wales who decide who is worth treating, who lives and who dies, hide behind a cheery, friendly sounding name. For years they had approved something with the equally Orwellian name, the Liverpool Care Pathway (LCP). Because contrary to the name, as put in effect it required withdrawing all care, including food and water, from patients who the hospital cavalierly and hastily deemed at the end of their life on the flimsiest of reasons. In fact, often the patient was not at the end of their life but since denying anyone food and water will kill the healthiest of people the fact that these patients did die made their diagnoses a self-fulfilling prophesy.

    The LCP produced numerous horror stories that were reported in the press. Most were from relatives who had to witness their loved ones die in excruciating agony, begging for water. The NHS defended the practice, claiming the LCP allowed terminally ill patients to die pain-free and with dignity. The relatives said the exact opposite was the case. The lethal LCP created dead patients and their loved ones died in agony and there is nothing dignified about begging for water for days on end. Although not all of the patients died begging as the only palliative care allowed to them was sedation. Often the hospitals would heavily sedate them to the point where they couldn’t even ask for water, because the staff got tired of hearing it.

    An atypical case involved a 90 year old woman who was treated at a hospital in south east England. It’s atypical because her granddaughters were so persistent in their insistence that she was not dying that the hospital staff took her off the LCP and she fully recovered. Her granddaughters could not believe she was dying because she had only gone in for a dislocated shoulder. Hospitals are wonderful places for catching diseases and developing infections; grandma developed pneumonia. That’s when her doctor made a snap decision that she was at the end of her life and they put her on the LCP. They told her granddaughters she only had 48 hours to live. Again, a self-fulfilling diagnosis because that’s about as long as a 90 y.o. woman can be expected to last without water.

    Her granddaughters demanded to know what she was dying of, and all the doctors could tell her was that she was very old. The old and disabled were primary candidates for the LCP. (Jane Campbell, Baroness Campbell of Surbiton, is severely disabled by a condition known as spinal muscular atrophy. In fact, when the doctors initially diagnosed her condition they told her parents that she wouldn’t live to see her second birthday. Boy, were they wrong. As a side effect of her condition she often suffers complication such as severe chest infection. During one of her hospital stays the doctors told her they “presumed” she wouldn’t want to be resuscitated should the need arise. She was so terrified she stayed awake the entire 48 hours she was in the hospital and later founded a disability advocacy group named Not Dead Yet.) The doctors kept seeing what they wanted to see in the old woman’s case. For instance they’d give her morphine. As a side effect of the morphine she would often become confused. But the doctors insisted that was a sign she was terminally ill.

    The day after she was put on the LCP an “End of Life” nurse visited the granddaughters in their grandmother’s room. The old woman woke up, had a full, lucid conversation with the nurse, even flirted with him, and together they convinced him that she was not dying. At least not dying of anything except the lethal treatment she was receiving.

    You might dismiss this as just anecdotal evidence. But in fact stories like this were quite common although they usually ended in death for the patient. This old woman knew very well that but for her family she’d have joined the rest of those patients. Even some of the NHS’s own consultants raised the alarm. One, Prof Pat Pullicino, professor of clinical neuroscience at the University of Kent, went public and declared that hospitals were using the LCP kill patients that were difficult to handle and to simply free up beds. At the time he estimated the NHS was killing (he used much more polite and less direct language and said they were “prematurely hastening” their deaths) 130,000 patients per year. Naturally this created a significant public outcry (one of the reasons the Charlie Gard case was even more of a cause celebre in England than here). But probably nothing would have done about had not a member of parliament, Rosie Cooper, made an issue of it. She had been appalled by how callously and even cruelly one of relatives had been treated.

    The government established a board of inquiry and in a model of understatement and even whitewashing the board announced via press release that the LCP was indeed being widely abused and was to be phased out. It also hinted at the underlying cause of the problem.

    https://www.gov.uk/government/news/overhaul-of-end-of-life-care-system

    The Government is to replace the Liverpool Care Pathway (LCP) and will ask senior clinicians to sign off all end of life care plans, as part of its response to the findings of an Independent Review, Care and Support Minister Norman Lamb announced today.

    …NHS England should work with CCGs to bring about an immediate end to local financial incentives for hospitals to promote a certain type of care for dying patients, including the LCP;

    Money, of course, the root of all evil. The press release doesn’t quite spell it out, but hospitals were assigned specific targets for deaths due to the LCP. I forget the exact number, but the formula went like this; of all deaths in a particular hospital, two thirds had to result from patients on the LCP. If they did the hospital would receive a bonus. I don’t recall if the bonus was shared out to the entire staff, but in any case the administration put a lot of pressure on the doctors to prescribe the LCP. Which explains all their snap decisions to put people on the fast track to death. These financial incentives were so widespread in England (the LCP was never extended to Wales although NICE sets policy for both England and Wales) and so uniform that they couldn’t have possibly been mere local incentives as the press release implies.

    The NHS has been under a great deal of pressure to cut rapidly escalating costs for years. The NHS has long used the carrot and stick approach to induce hospital administrators to do so. They established a system of fines and penalties on the one hand and financial incentives on the other. In 2015 the NHS told their subordinate Clinical Commissioning Groups (the CCGs mentioned in the press release) that their financial plans were simply unaffordable. Despite the fact that the government is not cutting spending on the NHS and even increasing it (estimated spending for F.Y. 2018 is 147 billion punds and is estimated to rise to over 150 billion by 2020) it won’t be enough. Consequently the NHS told their 216 local CCGs that collectively they must find a way to cut spending by at least 22 billion pounds by 2020 using 2015 as a baseline. That shortfall was the 2015 estimate; more recent estimates put the shortfall by 2020 at 30 billion. One way they’ve been directed to cut spending is not fill staff vacancies unless it’s absolutely necessary. But no one pretends that will make a significant difference.

    Where do you think they’re going to find that kind of savings, Ben?

    How about simply rebranding the LCP. That’s what they did. The UK press is full of reports about “arrogant” doctors still using the LCP even though it was banned in 2013.

    No exactly. It was never actually banned. It was supposed to have been phased out in 2014 but early in 2015 the Royal College of Nursing reported that many hospitals hadn’t changed their policies one bit. A ban without penalties isn’t actually a ban. NICE issued their new “end of life” guidelines a bit later in 2015. Prof. Pullicino, the NHS whistleblower I mentioned earlier, studied the 32 page guidance for a week. Then, writing for the UK Telegraph reported that if anything NICE had kept all the worst features of the LCP and added a few twists of its own that made it even worse. The central feature that made the LCP so bad was that it required medical staff to guess based on no clear evidence who was facing imminent death. The new NICE guidance kept that feature, and then made it worse by providing a laundry list of “sighs” or “changes” in the patient’s condition that would indicate the patient was in his or her last hours of life. The list included such “signs” as fatigue or agitation. There are all sorts of reasons a patient may become fatigued or agitated; it does not mean they are dying. In fact, none of the signs on the list could support such a diagnosis.

    It also included “anticipitary prescribing.” This was another factor that made the LCP so bad. It would allow a nurse to increase a patient’s dose of of pain relief and sedation without consulting a doctor to levels that would hasten the patient’s death.

    The guidance also directed the doctors to discontinue active treatment of the original complaint once they had deemed that a patient was dying. Again, they were doing this based upon a guess based upon NICE guidance that was in turn not based on any actual evidence. Just because a patient takes a turn for the worse doesn’t mean the patient will die. But because the NICE guidance directed doctors to stop treating any underlying conditions once they had made a WAG that the patient was on the way out, and taking a turn for the worse was one of the supposed “signs,” making a hasty decision to withdraw treatment would make sure that the patient would die.

    While the NICE guidance was a step up in that patients who wanted water should get it, then it took a step back when it advised doctors to tell patients who were unable to drink that artificial hydration such as a drip wouldn’t hasten death. That’s insane, Pullicino determined. If you don’t artificially hydrate a patient who can’t drink the dehydration will kill him. Any doctor would know this, so NICE was effectively encouraging doctors to lie to their patients.

    Regarding patients who are physically able to drink, simply saying that they should get water if they wanted it would not necessarily mean that they would get enough on their own to support their physiological needs. Despite the fact that the LCP was supposedly withdrawn Prof. Pullicino still saw severely dehydrated elderly patients in NHS hospitals. It’s the hospitals job to make sure, he said, that the patient is getting enough nutrition and hydration to support their physiological needs. They still weren’t doing so, despite the fact that dehydration was the primary means of killing patients under the older regime.

    All in all Pullicino called the NICE guidance a “disaster of misinformation, distortion and ambiguity” and the new guidelines would be just as lethal as the LCP.

    Oh, here’s another cost-cutting method. Pay doctors not to treat patients.

    http://www.telegraph.co.uk/news/health/news/11904082/How-your-GP-is-paid-to-stop-you-going-to-hospital.html

    How your GP is paid to stop you going to hospital
    Doctors are being offered financial incentives to reduce outpatient referrals, including two-week cancer waits and emergency admissions, study finds

    Family doctors are being offered bonuses of thousands of pounds to reduce the number of cancer patients sent to hospital, an investigation has found.

    GPs are being paid up to £11,000 to stay within targets for outpatient referrals and follow-ups, which can include two-week cancer waits and emergency admissions.

    Critics last night called the payments “highly unethical” and “very concerning”. The General Medical Council (GMC) suggested they could be regarded as an inducement and warned doctors it could constitute a conflict of interest. The schemes are at odds with the recently announced NHS cancer strategy, which promised an 80 per cent increase in tests for cancers.

    The UK has the worst survival rates for cancer in Western Europe, largely due to late diagnosis…

    Late diagnosis is the primary reason that nearly 50% of cervical cancer deaths involve women sixty five and older. Because women in that age range aren’t offered pap smears. only women from twenty five up to sixty five (there’s also a little problem with women in England getting cervical cancer, and for the same reason). According to the NHS’s own web pages on cervical cancer, just because a woman gets an unusual result on a pap smear that doesn’t necessarily mean she has cervical cancer. It simply means all is not well with the cells in the cervix. Again according to the NHS web pages infection and treatable precancerous cells are far more likely to cause an unusual result than cancer.

    The most common symptom of cervical cancer is unusual bleeding. For younger women that would mean bleeding not associated with their menstrual cycle. For women sixty five and older all vaginal bleeding would be unusual as they no longer have menstrual cycles.

    If I had treatable precancerous cells of any type of cancer I’d like to know about it while they’re still treatable. Wouldn’t you, Ben?

    The problem is without a screening test your doctor can’t know the cause. So the women in the two age ranges I mentioned who aren’t offered pap smears and end up with cervical cancer report that they weren’t even screened for it until they develop the symptoms of advanced cervical cancer; constipation, blood in urine, swelling of one of their legs, bone pain, etc.

    Their GPs had simply guessed that their vaginal bleeding was due to some more common cause. Such as, for younger women, a recent birth. Or they just assume it’s due to an infection and prescribe antibiotics. It can be a couple of months before the GP refers the patient to a specialist. Then there’s another wait of up to sixty days to see the specialist once you get he referall (it can be up to eighty days in Wales).

    Once these women actually see the specialist it does not automatically mean they will be screened for cancer. I’m shocked how often these specialists simply assume it’s a fibroid and send them away. A fibroid is a non-cancerous uterine tumor. It’s true that these are far more common than cancer, and although they can turn cancerous they rarely do so. But again, the doctor can’t know any of that without doing any tests.

    It’s common for NHS to force women to wait six months to a year before they screen them for cancer. Not in places like London but in more “underserved” areas. By then of course what might have been merely treatable precancerous cells have become cancer. What might have been early stage cancer has become more advanced, and may even have spread to other parts of the body.

    Admittedly cervical cancer is rare in women under twenty five. So it makes sense that they aren’t routinely screened. Women throughout Europe for the most part aren’t routinely screened, although in some countries they routinely screen women as early as eighteen. But they are “opportunistically” screened. That is, if they display symptoms that could be cervical cancer. This is far more common and more rapidly done in Europe than it is in the UK.

    As the above article states the UK has the worst cancer survival rates (all types) than the rest of Europe. The article fails to mention that cancer survival rates in the US are far higher in the US than for all of Europe. At least it was before Obamacare was enacted.

    Such are the joys of government health care, which we are beginning to experience.

    Steve57 (0b1dac)

  17. * there’s also a little problem with women in England who are under twenty five getting cervical cancer, and for the same reason

    Also, the exact formula for the targets assigned to hospitals was between one third and two thirds of deaths. As long as the number of patients who died fell within that range the hospitals received their bonus.

    Thanks for the prayers, Simon, I need all I can get. I learned in the Navy that when the government is paying the bills you may be the patient but you are not the customer. I still have untreated conditions because it wasn’t worthwhile for the Navy to pay for any treatment.

    For instance, on my first cruise I decided I wanted to become an EOD diver. I used to hang out with those guys in the wardroom. They were cool guys, and they told me they were short of officers. I had the opportunity to take the physical fitness screening test during a port visit to Subic bay in the Philippines back when we still had a substantial USN establishment. When I got back from cruise I called the SPECOPs (EOD/Salvage) detailer and I told him I was ready to go, how soon can you take me? When he found out I was Intel he told me that since EOD officers command minesweepers and such he couldn’t take me unless I submitted a package to a redesignation board and became a qualified Surface Warfare Officer.

    I got a little angry and decided I’d go SPECWAR (SEAL). I hadn’t tried to hard as for SPECOPS it’s just pass/fail but to become a successful candidate for BUD/S your score on the screening PFT have to be competitive. This is particularly true for officers as they’re expected to lead from the front so you had better done your best and your best must be better than most of the other applicants.

    Even without trying to hard I had done really well on the pull-up, push-up, and sit=up portions of the test. I had just barely passed the swim test. So I started working on it; at one point I was swimming a mile a day. Then one day I woke up and my arms sounded like bowls of rice crispies when I tried to move them. “Well, I guess I’m not going to be a SEAL,” I told myself. In fact, I couldn’t even get out of bed as I was in too much pain. Fortunately it was a Saturday.

    On Monday I went to medical and told them what was wrong and they did exactly nothing. I went back repeatedly over the years when the pain or other symptoms would flair up beyond merely bothersome. They never did anything for me, not even prescribing physical therapy which was available. The bottom line was I could do my job and pass the annual physical readiness test. It didn’t matter to them if at times I couldn’t even raise my arms above my shoulders (still can’t sometimes). I was meeting the needs of the Navy and that’s all they cared about.

    That’s government health care for you.

    Steve57 (0b1dac)

  18. At my father-in-law’s funeral the military chaplain wo presided gave a sermon which gave my wife a good degree of comfort, in it he said that one’s passing involves the closing of one’s eyes in this world and in the next moment the opening of them in the full welcome of heaven’s inhabitants. Hope that little Charlie had such a n experience-!

    NEOCON_1 (b69997)

  19. Amen.

    Steve57 (0b1dac)


Powered by WordPress.

Page loaded in: 0.2569 secs.