Browsed by
Tag: hospital

Charlie Gard’s Parents Are Forced to Stop Fighting for Their Dying Baby – Article by Marianne March

Charlie Gard’s Parents Are Forced to Stop Fighting for Their Dying Baby – Article by Marianne March

The New Renaissance Hat
Marianne March
July 27, 2017
******************************

I cannot imagine the pain Charlie Gard’s parents are feeling now, as they savor their last moments with their precious child. Charlie is 11 months old and he’s dying.

Chris and Connie have been fighting for months to get treatment for Charlie, ever since he was diagnosed with a rare genetic condition, mitochondrial DNA depletion syndrome. But they have been forced to give up that fight.

I can’t imagine their pain, but I can imagine their fury because I share it.

From the Hospital to the Courts

Charlie is not mine. I’ve never met him or anyone who knows him. Yet I am furious with the British government for refusing to allow his parents to take their dying son to the United States for treatment: a therapy trial, his last and only hope.

No further recourse was available in the UK, but an American doctor was ready to try to help him at Columbia University Medical Center. Charlie’s parents raised £1.4 million through crowdfunding; they had the money to take him to the US by air ambulance.

But doctors at Great Ormond Street Hospital in London didn’t like that idea. They said it wouldn’t help, that the American therapy was experimental. They said the baby’s life support should just stop.

On April 11th, a British High Court judge ruled with the doctors, empowering them to turn off Charlie’s life-support machines. His mother screamed “no” when she heard the verdict.

There was a petition with more than 110,000 names on it. People wrote letters to the Prime Minister, calling on her to release Charlie from Great Ormond Street’s care. The pope said he was praying for Charlie’s parents, “hoping that their desire to accompany and care for their own child to the end is not ignored.”

And now Charlie is out of time.

Even US President Trump tweeted that “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”

Charlie’s parents challenged the decision in the Court of Appeals, the Supreme Court, and the European Court of Human Rights.

All to no avail. The Courts would not allow them to try to save their baby’s life.

Who Can Call This Justice?

And now Charlie is out of time. According to the BBC, “US neurologist Dr. Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.”

It’s possible that Charlie’s doctors were right, that experimental treatment wouldn’t have helped (although his parents don’t think so, nor do American and Italian doctors). But what harm could it have done when he’s dying anyway? And if his parents had the means to give him one last chance, why shouldn’t they exercise their right to do so? They belong to Charlie just as he belongs to them, and no one but Chris and Connie should get the final say on his medical care.

I never really knew what people meant by the phrase “death panels” before. It was just a term bandied about by talking heads and political personalities. It’s chilling how well it applies in this instance: a group of bureaucrats that sits around deciding who is worthy of medical care.

I don’t know how the power slipped away from the individual, whether taken by force or given away with applause, but this is outrageous. And it’s wrong.

Read with a Box of Tissues

I will leave you with the words of Connie Yates, Charlie’s mom:

Due to the deterioration in his muscles, there is now no way back for Charlie. Time that has been wasted. It is time that has sadly gone against him.

We want people to realise that we have been speaking to parents whose children were just like Charlie before starting treatment and now some of them are walking around like normal children. We wanted Charlie to have that chance too.

All we wanted to do was take Charlie from one world renowned hospital to another world renowned hospital in the attempt to save his life and to be treated by the world leader in mitochondrial disease. We feel that we should have been trusted as parents to do so but we will always know in our hearts that we did the very best for Charlie and I hope that he is proud of us for fighting his corner.

Charlie had a real chance of getting better. It’s now unfortunately too late for him but it’s not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain.

Despite the way that our beautiful son has been spoken about sometimes, as if he not worthy of a chance at life, our son is an absolute WARRIOR and we could not be prouder of him and we will miss him terribly. One little boy has brought the world together and whatever people’s opinions are, no one can deny the impact our beautiful son has had on the world and his legacy will never ever die.

We are now going to spend our last precious moments with our son Charlie, who unfortunately won’t make his 1st birthday in just under 2 weeks’ time, and we would ask that our privacy is respected at this very difficult time.

Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you.”

Marianne March is a recent graduate of Georgia State University, where she majored in Public Policy, with a minor in Economics. Follow her on twitter @mari_tweets.

This article was published by The Foundation for Economic Education and may be freely distributed, subject to a Creative Commons Attribution 4.0 International License, which requires that credit be given to the author. Read the original article.

Politicians Exploit School Shooting While Ignoring Bombing Victims – Article by Ron Paul

Politicians Exploit School Shooting While Ignoring Bombing Victims – Article by Ron Paul

The New Renaissance HatRon Paul
October 14, 2015
******************************
Following the recent Oregon school shooting, many politicians rushed to the microphones to call for new gun-control laws. President Obama even called on gun-control supporters to “politicize” the shooting, while some members of Congress worked to establish a special commission on gun violence.

The reaction to the shooting stands in stark contrast to the reaction to the US military’s bombing of an Afghanistan hospital run by the international humanitarian (and Nobel Peace Prize winning) group Doctors Without Borders.

Our Nobel Peace Prize winning president did apologize to his fellow Nobel laureate for the bombing. However, President Obama has not “politicized” this tragedy by using it to justify ending military involvement in Afghanistan. No one in Congress is pushing for a special commission to examine the human costs of US militarism, and the mainstream media has largely ignored Doctors Without Borders’ accusation that the bombing constitutes a war crime.

The reason for the different reactions to these two events is that politicians prefer to focus on events they can “politicize” to increase the federal government’s power. In contrast, politicians ignore incidents that raise uncomfortable questions about US foreign policy.

If the political and media elites were really interested in preventing future mass shootings, they would repeal the federal “gun-free” schools law, for example. By letting shooters know that their intended victims are defenseless, the gun-free schools law turns schoolchildren into easy targets.

Even some who oppose gun control are using the shooting to justify expanding federal power instead of trying to repeal unconstitutional laws. Some opponents of new gun control laws say Congress should expand the federal role in identifying, tracking, and treating those with “mental health problems.” This ignores the fact that many shooters were using psychotropic drugs prescribed by a mental health professional when they committed the horrible acts. Furthermore, creating a system to identify and track anyone with a “mental health problem” could deny respect for individuals’ Second Amendment and other rights because they perhaps once sought counseling for depression while going through a divorce or coping with a loved one’s passing.

While our political and media elites are eager to debate how much liberty people must sacrifice for safety, they are desperate to avoid debating the morality of our foreign policy. To admit that the US military sometimes commits immoral acts is to admit that the US government is not an unalloyed force for good. Even many proponents of our recent wars support using the US military for “humanitarian” purposes. Thus they are as reluctant as the neoconservatives to question the fundamental goodness of US foreign policy.

Anyone who raises constitutional or moral objections to the US use of drones, bombs, indefinite detention, and torture risks being attacked as anti-American and soft on terrorism. The smear of “terrorist apologist” is also hurled at those who dare suggest that it is our interventionist foreign policy, not a hatred of freedom, that causes people in other countries to dislike the United States. Which is a more logical explanation for why someone would resent America — a family member killed in a drone attack launched by the US military or rage over our abundance of liberty?

The disparate reactions to the Oregon school shooting and the Afghanistan hospital bombing shows the political class is unwilling and unable to acknowledge that the US government cannot run the world, run our lives, or run the economy. Clearly, politicians will never stop expanding the federal government and give us back our lost liberties unless and until the people demand it.

Ron Paul, MD, is a former three-time Republican candidate for U. S. President and Congressman from Texas.

This article is reprinted with permission from the Ron Paul Institute for Peace and Prosperity.

Why Do We Advocate for Rejuvenation Research? – Article by Reason

Why Do We Advocate for Rejuvenation Research? – Article by Reason

The New Renaissance Hat
Reason
November 24, 2014
******************************

Yesterday, I had occasion to spend six hours or so in the emergency room of a medical center largely focused on treating serious conditions that are most prevalent in old people. A part of that experience by necessity involved listening to the comings, goings, and conversations of those present. These are not private places: they are typically divided visually by screens but with no way to avoid overhearing the staff and patients. The people there are generally not too concerned about privacy in the immediate sense in any case, having far more pressing matters to focus upon.

So, by proxy, one gets to experience small and somewhat wrenching slices of other people’s lives. It is very easy for even those who follow aging research and speak up for rejuvenation treatments to forget just how hard it is to be very old. It’s one thing to know about the catalog of pain, suffering, and loss of capabilities, the conditions we’d like to find ways to turn back, and another to watch it in action. It is, really, a terrible thing to be frail.

A fellow was brought in a little while after I arrived, a 90-something man who looked a lot better on the exterior than perhaps your mental picture of a 90-something individual might be. Tall, and surprisingly lacking in wrinkles stretched out on the rolling gurney under blankets, a mess of cables, and an oxygen mask. That he had fallen was what I heard from the conversation of the medics, and was in pain. He cried out several times as he was moved from the gurney. It took some time and care to do it without hurting him more, given his weakness.

He seemed confused at first, but that was just my misperception: you try being 90 and in pain some time and see how well you do while you’re being moved around and told to hold this and let go of that. The fellow answered the bevy of questions the receiving staff had for him, but the thing that caught at me was the time he took with the answers, and the questions he just missed. He was coherent, even quite sharp at times, not on any more painkillers than a handful of Tylenol, as I later heard, but he clearly struggled with something that we younger folk all take for granted: parse the question, find the information, form up a reply and speak it. Cognitive ability in all these areas becomes ever less efficient with old age, and there’s something hollowing about hearing what is clearly a capable guy set back for a dozen seconds by a short question about one of the details of his fall. The medic repeated the question a few times and in different ways, which was clearly just making the information overload worse.

It sticks with you to be the observer in this situation and clearly and suddenly realize that one day that faltering older person will be you, trying and often failing to force your mind into the necessary connections rapidly enough for the younger people around you. I know this, but knowing it and having it reinforced by being there are two very different things. An aged person is no less intelligent, far more experienced, wiser and all the rest, but the damage to the structure of the brain that occurs even in those without dementia means that making use of all of that in the way it deserves is near insurmountable.

The fellow’s 60-something daughter arrived a little later to provide support and fill in more of the details. A story was conveyed in bits and pieces: that he was near blind now, and just about too frail to walk safely, even with a frame. The blindness explained a great deal of what had sounded to my ignorant ears as confusion in the earlier part of the fellow’s arrival: we assume all too many things about those around us, such as the use of sight in an unfamiliar environment, or the ability to walk, or think quickly – and all of this is taken from us by aging. The fellow lived with his wife still, and she was of a similar age to him. His wife was not there because she herself was too frail to be undertaking even a short trip at such short notice. That seemed to me a harsh blow on top of the rest of what old age does to you. At some point you simply cannot do everything you’d want to as a partner. You are on the sidelines and at the point at which your other half is most likely to die, you are most likely unable to be there.

In this case the fellow was in no immediate danger by the sound of it. By good luck this was in no way likely to be a fatal accident, but rather another painful indignity to be endured as a part of the downward spiral of health and ability at the end of life. Once you get to the point at which simply moving from room to room bears a high risk of accident, and this is by no means unusual for a mentally capable person in their 90s, then it really is just a matter of time before you cannot live for yourself with only minimal assistance.

When talking with his daughter while he waited on a doctor and medical assistants to come and go with tests and updates, the fellow was much faster in his responses, though this was interrupted by a series of well-meaning but futile attempts to ease his pain by changing his position, each as much an ordeal as the move from the gurney had been. The conversation between father and daughter had the sense of signposts on well-worn paths, short exchanges that recapitulated the high points of many discussions that had come before. She wanted her father to move into an assisted living facility, and this fall was the latest in a line of examples as to why it was past the time for this – she simply could not provide all of the support needed on her own. She wasn’t even strong enough herself to be able to safely get him back up on his feet after a fall. He was concerned about cost and the difficulties of moving, uncertainties and change. They went back and forth on this for a while. “We have to accept that it’s just going to be more expensive as we get older,” she said at one point, and he replied “I think you’re getting the picture now,” and laughed. There wasn’t much to laugh about, but we can all do it here and there under these circumstances. I believe it helps.

I walked out of there after my six hours of hurry up and wait was done. They were still there, and whenever it is he leaves to go home it is unlikely it will be on his own two feet. But this is a scene I’ll no doubt be revisiting at some point in the future, some decades from now, playing the other role in this small slice of life. What comes around goes around, but I’d like it to be different for me, and more importantly to be different for millions of others a lot sooner than my old age arrives.

Which leads to this: why does Fight Aging! exist? Why do we do this? Why advocate, why raise funds for research programs into ways to treat aging that may take decades to pay off? We do this because we can help to create a future in which there will be no more emergency rooms like the one I visited, no conversations about increasing disability, no pain, and no struggles to answer questions as quickly as one used to. No profound frailty. All these things will be removed by the advent of therapies that can effectively repair the causes of aging, curing and preventing frailty and age-related disease, and the sooner this happens the more people will be spared.

Reason is the founder of The Longevity Meme (now Fight Aging!). He saw the need for The Longevity Meme in late 2000, after spending a number of years searching for the most useful contribution he could make to the future of healthy life extension. When not advancing the Longevity Meme or Fight Aging!, Reason works as a technologist in a variety of industries. 
***

This work is reproduced here in accord with a Creative Commons Attribution license. It was originally published on FightAging.org.