No Parent Should Ever Have to Say "Good-Bye"!!!!
by Laurie Leveille
(St. Catharines, Ontario, Canada)
When we were finally allowed to see Clayton, we knew that he had lost his fight. This was the hardest thing to witness as a parent. When we left ICU, one of his doctors came to talk to us. She was extremely compassionate and felt our pain along with us. It was evident that she was struggling to inform us that Clayton would not make this battle. His kidneys, spleen and liver were failing. Although we knew this in our hearts, her words made it so much more real. It’s hard to accept that we would have to say good-bye to our child. We gave him life; we loved him and cared for him. No matter how hard we tried to protect him, this was out of our control.
His brother and best friend was away at school so they kept Clayton on life support until he arrived. It was hard enough for us to watch Clayton die but to watch our other children deal with this was heart wrenching. They removed him from life support and within minutes, he passed away. My husband and I were with him when he took his first breath and now we watched him take his last. This was unbearable as a part of us died with him. No parent should ever have to say “good-bye” to a child.
Over Clayton’s last three days, we knew it was quite possible that he wouldn’t make it. Since he was never conclusively diagnosed with a disease, both my husband and I were in favour of an autopsy. If they could find out anything post-mortem that might shed some light on what he had, we wanted the medical staff to know that we would grant them access. Unfortunately, the hospital did not care to know. They were releasing his body. As far as they were concerned, this case was one of a kind and it was over. I guess they just wanted it to be swept under the carpet.
Numb after the whole ordeal, we went home without our son. It bothered Fernand that they dnt to perform an autopsy so he called the Juravinski Hospital in attempts to find out why. Did they not want to take as much information from Clayton’s body to learn what he died from? Who knows, maybe some day it might help someone else. Once again, they made it clear that they were not going to perform an autopsy. They did, however, want us to know that for $8 – $10,000, they would be willing to do one for us. An autopsy wouldn’t help Clayton now, so we agreed to pick up his body as soon as possible.
Shortly after, one of Clayton’s doctors called to share his condolences with us. He also asked if we had agreed to an autopsy. My husband explained that we had tried multiple times over the last few days to give them our permission but in the end, they did not want one. His doctor was shocked and asked my husband to call once again. Fernand did so but to no avail. They thought that being grieving parents, we wanted to find out if anything had gone wrong. Once again, Clayton’s doctor could not believe what he was hearing. He did not want to see a 21 year old lose his life to an unknown illness and have nothing to come of it.
At 12:30 a.m., we received a call from the Juravinski Hospital. They informed us that the paper work had been overlooked and they did in fact want an autopsy performed. Hospital personnel requested that we come in to sign a written consent. We were appalled. For three days we tried desperately to get through to hospital staff that we agreed to an autopsy. Not once during this period did anyone ask us to sign a consent form. It was now obvious that they never intended to do an autopsy. We refused to come in at this late hour since the trip would take approximately one hour each way. We were dealing with our other grieving children and didn’t want to leave them. Finally, they agreed to take our verbal consent. The autopsy was performed the next morning. We now have to wait at least six months to see if it can shed any light on Clayton’s illness.
What is wrong with our health care system? Canadian citizens outside of the country have the lowest priority to a hospital bed in their own country. Once in Canada, a patient cannot be moved to another facility unless all avenues of care have been exhausted at the current hospital. Even when doctors fight for a patient’s transfer, they too could be ignored. The medical system is a business. It does not look at what is in the best interest of the patient, rather, it is most concerned with what is in the best interest of the books bottom line. Obviously, human suffering does not come into play. Accepting a patient’s plea for treatment as a final hope has no merit if the administrators don’t see a financial gain.
They knew that Clayton would most likely die so why would they bring on any more financial burden than necessary. If he did die and they had elected to treat him for HLH when in fact it was something different, they might have a malpractice suit on their hands. Like anything else, a hospital is a business and making a profit is what matters most. In our eyes, however, letting our son suffer for over seven months is the utmost malpractice of justice.