The Importance of Palliative Care

When I look back on all of Alli's specialists, starting with the maternal fetal medicine specialist, Dr. Mann, I often wonder why the notion of palliative care wasn't raised sooner.  I know the answer to that question.  Palliative care assumes an adult or child has a terminal illness or disease.  No parent wants to fully consider the possibility of their child's death when they are faced with addressing the medical decisions to "save" their child's life.  However, palliative care is not about death.  It is about life.  The life of your child and the life of your family.

I don't think palliative care is appropriate for every cold, flu, asthma, and ear tube diagnosis, but I do think that we should have talked with palliative care at the time we learned that Alli had complicated heart defects associated with her, at the time potential, down syndrome diagnosis.  We spent 2 years, from the time of my first suspicious ultrasound, trying to find ways to cure Alli so that she could go on to have a 'normal' life.  We pumped her full of toxic medication to control seizures.  We shoved tubes down her throat multiple times to help her breathe.  We subjected her to traumatic surgeries and procedures.  Maybe we still would have done all of those things, but the addition of the palliative care team helped us to stop assuming that we would continue to pursue every possible medical treatment and start considering what was really in the best interest of Alli and her already fragile life.  That should have been our goal from the beginning.    

The palliative care team did not make decisions for us.  What they did do was ensure that Jason and I were having more meaningful conversations about how to move forward with Alli's medical decisions taking her current life in to account.  Doctors and nurses will let you do terrible things to your child in the name of "saving" his or her life.  Medicine has advanced to a point where doctors can take fairly extreme measures to keep a child alive and if you aren't paying attention, or having a broader conversation about the bigger picture of what this means for your child, you can find yourself in a precarious position.

I think the addition of the palliative care team helped to ensure that Jason and I were on the same page about medical decisions.  It took a long time for us to get to that point.  While we were often on the same page about Alli's overall condition, we were not always on the same page about what that meant from a treatment perspective.  Discussions around palliative care helped us to bridge that gap.  It brought Alli's quality of life, both current and potential, to the forefront when we were making decisions.  Their care was as much about Alli as it was our whole family.  Certainly managing her quality of life was the focal point, but I believe the way their process works helps to ensure the quality of life of the family continues during and beyond the child's illness.  Because their team applies a multidisciplinary approach there is a counseling aspect to it that encourages healthy communication between parents, siblings, and the extended family.  I believe in some ways, regardless of whether this is overtly stated in their mission, they help to ensure that the family doesn't die with the child.

The palliative care team helped us to remove the blinders.  They took away the automatic medical decisions and helped us consider the broader context of our decisions.  That is why I believe they are the most important part of a medically fragile child's team of specialists.  Ultimately they want your child to live and they want your family to thrive beyond your child's illness or possible death.  We are so grateful for everything they did for Alli and our family.

One way that we are showing our gratitude to the palliative care team is by setting up a page on the Children's Healthcare of Atlanta website in Alli's memory.  100% of donations made through this page will support the efforts of the palliative care team.  No portion of the donation is allocated to administrative costs, as we have specifically identified the PACT team to be the beneficiary.  The link to the page is:

http://click4kids.kintera.org/allisonclairehakerem 

We have also included the link on the menu bar in the blog.