Who Has The Final Say- End of Life Care

Final Say: Who has it?

Today, we live in a society that is rooted in left vs. right arguments. One of the arguments that constantly gets brought up is Death with Dignity. The left supports it and the right sees it as outrageous. People ask the question of ‘how do we know life is really over’ or what the qualifications are to be “technically” dead. While a notable subject, it gets to be even more sensitive when we bring in the thought of children and their well-being. The moral dilemma being, who has the last say in a minor’s well-being? Should it be the parents who helped raised them or the doctors who treated them and have science to back them up? I’ll support the latter.

There is a story circulating in the main stream media of an 11-month old baby born in London, England. Charlie Grad was born a healthy little boy, but shortly thereafter, at only 8 weeks of age, he was sent back to the hospital. Charlie had a rare genetic syndrome called Mitochondrial Depletion Syndrome (MDS), with approximately 45 known cases worldwide. According to the National Library of Medicine people with (this disease) lose motor skills such as standing, walking, eating, and talking…the muscles that control breathing become weakened and have to rely on mechanical ventilation”

Once admitted to the hospital, Charlie’s condition slowly started to deteriorate. Many of the symptoms began to take effect and he was put on a feeding tube and a ventilator (life support). Charlie’s parents, Chris Gard and Connie Yates, immediately began looking for treatments. They had luck finding a trial in America with a therapy called nucleoside. They even found a boy who had used the drug and had little to no side effects as well as improved quality of life. Unfortunately, the doctors at Great Ormond Street Hospital (GOSH) believed that Charlie’s condition was not looking well and by the tests they ran, his chances for a normal life were slim to none.

GOSH said that it would be best for Charlie if he were taken off life support to “die with dignity.” His parents did not agree. Thus began the lengthy court battles extending over eight months. After the High Court ruled in favor of the doctors, the family then decided to appeal the verdict. After another set of three different judges evaluated the case, they too came to the same conclusion. The parents still sought to fight the verdict. The Human Rights court also looked into the case, but said they could not intervene. This ultimately led into several months of trial and the deterioration of Charlie.  His parents finally withdrew their last appeal claiming “time had been wasted.

Looking at several opinion blogs and posts, it’s clear to see that everyone was in support of #Charliesfight. My position may be different, but I’m not as cold hearted as you may think. It’s sad for any parent to have to go through what Charlie’s parents are going through, but there comes a time when we have to face the facts. A team of medical professionals came in and examined him and concluded that he was suffering. Since he was only being kept alive by life support, they thought he should be able to die with dignity. These medical professionals also looked at every possible treatment for the disease and ran through statistical data noting that there was no type of drug that could help Charlie. After the doctors came to the decision and the parents declined, it then went to the High court who agreed with the doctors. After three more judges and human rights lawyers all looked and examined Charlie’s case, they all came to the same conclusion.

Once the doctors said that he was suffering, I decided that putting him through that much pain was not worth it in the end. While I understand the parents’ desire to keep him alive for as long as possible, I don’t think that’s anyway for someone to “live.” After all the legal proceedings and the thought of him being in pain, I think it’s clear that things won’t get much better. It’s hard to see clearly when so directly involved with the patient and their case. I’m sure even the doctors at GOSH had a hard time making this decision, and by asking a third noninvolved party, they obtained an unbiased opinion and made a sound call.

Many will argue against me and say that the doctors had ‘no right’ to deny him life support when actually, yes, they do have that right. According to the Cleveland ClinicIt is legally and ethically appropriate to discontinue medical treatments that no longer are beneficial. It is the underlying disease–not the act of withdrawing treatment–that causes death.” In reality, his disease is killing him and these machines are only enabling breaths and nutrients. Once that is taken away his MDS will be the cause of his death.

Opinion pieces claim that parents will do anything to save a life. While this is true and I expect nothing less than that from parents, there comes a time when you have to see if your actions are harming or helping. In this case, the dragging on of the court cases only harmed Charlie. Some people think that other people who agree with these doctors have ‘no heart’ when really, they’re just doing their jobs. People are taken off of life support every day, in the event that this is the best solution for them. No one is making these decisions without thought, reason or compassion.

The biggest argument against the doctors and the courts is about the boy in America who is benefiting from a trial drug. There are many things in that case much different than Charlie’s, the first of them being age. The younger you are when the syndrome onsets the higher mortality, Charlie was three-months this boy was three-years. They reported that his quality of life has improved, but that only means that he is now able to stand in an assisted machine for an hour, and his means of communicating is through grunts and pointing. The probability of the child making it to his teenage years is still very low. In fact, rarely do people with MDS make it to adolescence.

Charlie and his story is heart wrenching.   It’s sad to see any child in pain, but we have to face the facts. He was dying from a syndrome with no cure and treatments were only temporary relief. After a few months on life support, Charlie experienced little to no brain stimulation, so the development had stopped. With a unanimous decision from doctors, lawyers and judges that treatment should be stopped, it’s hard to deny the facts. While I wish it didn’t have to end this way, this is the best way for him to die with dignity.

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