Sick Kids Culture

As readers of this blog are aware I sent a report to the Hospital for Sick Children regarding our experiences - good and bad - while at the hospital. The report focused on Family Centered Medicine. This is a relatively new approach to medicine and has been proven in clinical trials to enhance the effectiveness of treatment.

The report was the most difficult document that I have ever written. I wrote fifty-seven pages trying to focus on the great care that Melodina received while she was at the hospital. The purpose of the report, however, was an effort to help the hospital to make positive changes that would effect the care and treatment of other children well into the future. As such I tired to express the pain and suffering that was experienced by Melodina, other children we witnessed and other parents struggling to understand what was happening with and to their children.

Everything in the report was discussed and approved by Melodina. She ask me on a regular basis while she was confined to her hospital bed to include this or that incident or experience in the report. Indira, Harmony, Melodina and I discussed what to include for months. We were trying to make the report not only helpful in its content but carry the incredibly powerful impact of a family caught in a war they didn't want to be a part of and fighting for the life of their youngest child. I wanted the reader to somehow feel the extreme suffering as well and the consistent good will and extraordinary will power throughout inconceivable suffering that Melodina exhibited.

Melodina was a unique child by any measure. What she experienced was hyper real and so beyond the commonplace that I felt it was necessary to somehow bring the reader into Melodina's world, her life and her experience. That is why I had a difficult time writing. It was like experiencing the most painful time of my life and watching what is the inexplicably horrendous suffering of children all over again. It is, without a doubt an inspiring and life changing experience. I would not give up a minute of it but still, one wonders, why?

The details of the report were investigated by a team from the hospital. The inquiry was done under Ontario's Quality of Care Information Protection Act. QCIPA protects all who contribute to such an inquiry from repercussions by making anything received by the hospital confidential. Even the final report by the committee is confidential. The only information we are able to get are the recommendations which are actually implemented. Obviously this is a trade off. It likely means that those the investigating committee talk to can feel free to be honest without fear. The downside is that it is anything but an open process.

I accept the process as valid for three reasons. First of all I think that staff at the hospital need to be able to express themselves without fear. Secondly the staff involved in the investigation told me that 80% of their recommendations have been implemented historically. The third reason is that it is The Hospital for Sick Children. My experience with the hospital tells me the culture of the hospital is such that the administration and most of the staff are constantly looking for ways to make things better for their patients and their families. They are constantly looking for better ways to treat those in their care.

We did meet with both the CEO of the hospital and the investigation team recently. Both apologized. (An apology is now legal without admitting guilt or liability in Ontario health care.) Then the committee went over areas where change is being made as a result of Melodina's experience. There should be better communication between doctors and patients and their families on the oncology/hematology wards in the future. More staff doctors should be hired in the Bone Marrow Transplant Unit. There are several other changes. I will report further in future postings.

We look forward to next steps which the hospital will inform us of soon.