Emily M. DeArdo

writer

Charlie's Dignity

current events, healthEmily DeArdoComment

I love my parents. They've done yeomen's work the past 35 years, helping to keep me alive. I know parents who do not do a good job with their children's illnesses--my parents have been rockstars on every level. 

I love my doctors. They are also rockstars. They are the people who continually keep me alive, even when other doctors have told them that it was a waste of time and/or effort. I have a doctor who got an international pager (back in the day) so we could always contact her. I have nurses who will answer my emails at any time. I've worked with incredible medical professionals of all stripes. (And some that suck. But we're not talking about them today. We're talking about the awesome people.) 

Most of the time, the two groups of awesome are in agreement about what should be done. But not always. When I was in the ICU in 2001, and no one knew what was wrong with me, several of the ICU doctors were ready just to write me off. My parents weren't, and neither was my doctor, or the head of the ICU, who worked insanely hard to figure out what was wrong with me--eventually, they did. And I'm writing to you today. 

Doctors are awesome. But doctors can be wrong. And parents are awesome. But parents can be blinded by love. 

Which is why we need moral and ethical guidelines in place, in cases where the two groups of Awesome cannot agree on what is the proper course of action.  Except...what do we do when doctors want to embrace a course of action that will kill their patient, and the parents are vehemently opposed? 

If you aren't familiar with the case of little Charlie Gard, here's the nutshell: Charlie has a very, very, very, VERY rare disease--so rare that maybe 17 other people in the world have it. Since birth, Charlie has been treated at London's Great Ormond Street Hospital (GOSH). Because of Charlie's disease, he cannot breathe on his own, and he cannot see or hear. 

GOSH wants to take Charlie off life support so he can die, because they feel he's not going to get any better, so it's time to embrace the inevitable. His parents, obviously, are against this, because Charlie is alive with the help of ventilators--like many other people, in ICUs the world over, or people who have tracheostomies. They are alive because of machines, but they are alive. A ventilator or breathing support really isn't an extraordinary measure, these days, on its own. 

The parents would like to take Charlie to the United States to try another treatment--GOSH won't let them. This case went all the way to the European Court of Human Rights, which sided with the hospital.  (Isn't that just dripping with irony?) 

What's the hospital's argument? That the treatment the parents want to try will cause Charlie pain and suffering and it won't work, so they refuse to let Charlie's parents try it

I find the hospital's "reasoning", on multiple levels, insane. One because doctors are supposed to help patients--not kill them, which is what would happen if Charlie was taken off the ventilator. It's no different than removing a breathing tube for a quadriplegic. Now, Charlie's condition, as it stands now (and as I understand it), won't get better. He's going to die. But that doesn't mean the parents don't have every right to try another treatment, in another country, that the parents are going to pay for. The money's already been raised. Hospitals in the US, as well as Gesu Bambino hospital in Rome (which is run by the Vatican), have offered to take Charlie as a patient. But GOSH will not release Charlie to his parents' care. 

Just because Charlie cannot breathe on his own, cannot hear, and cannot see doesn't mean his life has no value. OK? I can't hear without my CI, really. So does my life have no value? I've been on ventilators before. Did my life have no value then? Does Stephen Hawking's life have no value, because he has a tracheostomy? Or people in wheelchairs, or quadriplegics, who also need help to breathe and do just about anything on their own? Since when is the value of a person determined by what they can do? 

When a person is dead, then yes, it's time to let the child go. But Charlie isn't dead. This isn't the case of parents fighting a hospital over a brain death certification. Charlie is alive, and the hospital wants to stop that--because he might be suffering. And he's not going to get any better (they think. They might be right. But we don't know that.). 

I talk about this sort of thing a lot here, because people need to realize that life isn't about what you can do. Life has value because a person has value, no matter what. Pain and suffering are inevitable parts of life. 

But apparently no one told the folks at GOSH, or the European Court of Human Rights, this. Because Charlie's life, to them, isn't really all that important. They've kept him alive long enough. Now it's time to just shut of the machines and kill a little boy. And if we're going to talk about pain and suffering, they will basically suffocate Charlie by removing his ventilator. Is that going to cause pain and suffering? I think so.  

I'm not going to say the hospital doesn't care. I'm sure the nurses and doctors who care for Charlie care very much. But the state has clearly overstepped its bounds. 

Charlie can't make a decision on his own about his care. His parents have to do it for him. They would like to, at the very least, take him home to say good-bye to him, and let him die with them, in real dignity, not the fake dignity the state is suggesting.   If Charlie's parents decided that they wanted to pursue hospice care for their son, that should be their decision, and the hospital should give them the resources they need to make sure that Charlie can have a peaceful passing. 

Is it inevitable that Charlie will die? Yes, because we all will. But there is absolutely no need to hasten it, the way GOSH wants to, because The Almighty Doctors have decided that it's time for Charlie to die.