Recently a new study spearheaded by the Hospital for Sick Children and the University of Toronto was launched. They are looking into how to make the experience at the hospital while a child is dying better. As I understand it the idea is to improve service and care for both dying children and their families. In order to accomplish this and come to realistic recommendations, mothers who have lost children in the hospital are being surveyed. Indira was asked to participate in this study. Difficult as she knew it would be she agreed. It seems a way to help children and their families who find themselves in a similar situation that we were in nearly two years ago.
We knew it would be difficult so I sat down with Indira to answer the first of two multi page surveys that she would be asked to fill out. The questions brought back all our experiences of the last two or three weeks of Melodina's life. We had to live them all over again. We discussed our feelings and what we thought could be improved and Indira answered the questions. We cried together. The questionnaire even asked what level of emotional pain the participant went through filling it out. It was even more traumatic than Indira had thought it would be. Quite an experience! Indira went through it gladly hoping to help dying children and their parents in the future.
It is hard to imagine if you haven't had the experience of watching children dying through excruciatingly painful disease and even more painful treatment. You might think that one looses the feelings of pain and horror over time but that is not true. I think, maybe that if you don't feel the trauma as a part of life you are running away. I have seen doctors who try to hide their emotions and their empathy behind an impenetrable wall have also hidden their humanity. While they appear to function normally, these doctors also fail their patients by apparently being unable to know them as human beings. People are treated as mechanics treat cars. The doctors suffer from lack of emotion and the patients suffer from lack of humane care. This may or may not be an accurate assessment but it fits with my observations and it is sad. If you pray perhaps you would want to pray for the doctors as well as the patients. Both are in need of ongoing help and care. At least that is my understanding of my observations.
Having written the above it should be noted that most of the doctors and staff at Sick Kids exhibit an extraordinary amount of compassion to go with their world class education and exceptional intelligence. We are fans of Sick Kids and continue to follow Melodina's example by fundraising for the Sick Kids Foundation. See http://www.melodinatribute.org/ . While we have to relive the experience in order to help others we also remember the many positive people and the amazing strength of spirit exhibited by "cancer kids". They continue to be an inspiration and I will be be forever grateful for the lessons learned and many of the experiences though I wouldn't wish that anyone go through them.
Back to the survey. We remember the Chronic Care Unit at Sick Kids as being a compassionate and caring part of the hospital with much opportunity for us to participate in Family Centered Medicine. Never the less many things could have been done differently and much agony could have been dampened or avoided so Indira went through the difficult experience of detailing her memories through the survey. Soon the next stage will come and we will do it again.
Sick Kids has already made changes to the training in the some parts of the hospital where families and patients are under extreme emotions stress as a result of our experience, my written report and follow up investigations. The Paediatric Intensive Care Unit and the Neonatal Intensive Care Unit nurses have now participated in "crucial confrontation training in hopes of reducing misunderstanding, poor communication and indeed, interpersonal conflict." This is just one more example of Sick Kids Hospital trying to do a better job. We look forward to the continuing practice of always trying to do it better.
