2011 Pediatric Bioethics Conference: A Parent's Perspective

The Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital hosted its seventh annual international pediatric bioethics conference,"Who's Responsible for the Children: Exploring the Boundaries of Clinical Ethics and Public Policy," on July 22 and 23, 2011, in Seattle. The conference featured nationally recognized speakers in bioethics and drew over 200 participants from across the nation and worldwide. Most participants were medical professionals.

There were many questions that the panel sought to address:

Should individual providers or healthcare institutions provide medical care to children whose families cannot pay?

Do providers have an obligation to tell families about healthcare options that will not be offered because of financial constraints?

How do we balance obligations to provide better healthcare with obligations to improve other factors that influence health, such as diet, exercise, housing and education?

Should care to children be prioritized based on social, physical or mental health status?  who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?

What about children who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?

What about children with intellectual disabilities who require special resources, yet will remain dependent on society? Children who have mental healthcare needs? Children who are undocumented?

How will healthcare reform affect the goal of providing for the basic healthcare needs of all children?

You can view a webcast of the entire conference or each individual presentation by clicking here.

I was very excited when Seattle Children's Hospital asked me to speak at this conference. They wanted a parent's perspective, and I have the experience they needed for the presentation. The organizers of the conference wanted to put personal stories and faces to issues families deal with everyday. I said that I would love to speak for all the parents out there that don't have the opportunity. I feel I have a lot of experience in navigating the healthcare system when caring for disabled children because of Kai's progression. I have gone through many different situations dealing with the healthcare system, hospitals and homecare. Having a child that is not able to attend daycare, but does not qualify for home nursing is a challenge many families face. What do you do? How do you provide for your family? I went from confronting this issue to having such a medically intense child that he needed 24 hours of nursing care at home, and we could not qualify for that. Kai, and consequently, my partner and I, began living at the hospital in order to have the best possible care for Kai.

The other parents that spoke had great examples of the difficulties families experience as well. I would love to hear everyone's thoughts and experiences on these matters.