Thursday, May 22, 2008

Some thoughts on work

I haven't posted about work for a while. The research project I'm currently working on is a sobering topic, to say the least. Its goal is to improve end-of-life care for children who die in the pediatric ICU. Yes: improve end-of-life care for CHILDREN. Who DIE. It's a sad topic, to put it mildly.

But in the day-to-day work of the study, I don't focus so much on the kids who die and the families left behind, and instead I deal with the realities of coordinating a research study, which includes lots of emails and phone calls and dealing with human subjects issues and institutional review boards and research coordinators and forms and schedules... you get the picture.

Yesterday, however, was one of those days that the reality of the work hit me full in the face. As part of a meeting with other researchers working on similar issues, we saw a training video that is used to train medical professionals to be more sensitive and effective when dealing with parents of kids who are trying to make end-of-life decisions. We watched this video, with actors mind you, and it depicted a sad story of a little boy who had a near-drowning experience, and now he was essentially in a vegetative state. His poor parents were talking with the doctors, trying to figure out what to do. The choices were basically: you can keep him alive with machines (a breathing machine and a feeding tube) but he won't have any quality of life (at least in my opinion); or you can withdraw life support and let nature take its course. Even though it was just a video, even though it was actors, even though I work with these issues almost every day... it was still very emotional for me. Just the thought of having to really deal with this issue in my life makes me so sad.

On the other hand, we got some wonderful, positive feedback in this meeting that the work we/I've been working on for over a year is really yielding some fruit. We are working on a survey that will be used to assess the experience of kids and families during the end-of-life experience. What's different about this survey is that it's from the point of view of the parents, instead of from the point of view of the clinicians. So it really gets at what kids and parents and families need in this terrible situation and whether their needs are being met. It was very validating to hear that folks in the field thought we are doing a good job. So that was the good part of the day.


Anonymous said...

It's so important that all stages of life be of good quality, even the end. Good for you.

Radiomom Rhetoric said...

Hi there--followed your link in a Manic Mommies post...

Interesting work! I was with my sister and her husband as they removed life support from my infant niece. I was amazed at how much the parents (even though they may not remember all the details) were EDUCATED by the professionals in the NICU.

It was a really sad time for our family, but you also come to appreciate the gift of really good care. 6 months late, as we watched our father pass in hospice, it actually made the death experience much (dare I say) EASIER to deal with.

Anonymous said...

Hello! I am very interested in the work that you are doing as I am working to develop a very similar survey to ask bereaved parents about the quality of care they and their child received in hospital (not just ICU). I am doing this work as part of a PhD in nursing. I am wondering if there is some way for us to connect appart from this blog (I am new to this blogging thing :-)) Good luck with your work. Obviously I am a little biased, but I think it is so important!!