I had the pleasure and honor of attending the California Coalition for Compassionate Care conference on Palliative Care on March 13 through the 15, 2017. It was an amazing conference.
What is Palliative Care? Well it's called living life. Living life the way you want with what is important to you. It's mostly used in situations that involve terminal illness, or chronic illness, but honestly......
WE SHOULD ALL BE LIVING A PALLIATIVE CARE EXISTENCE.
Palliative Care = Quality of Life Care
Palliative Care asks questions like -
"What brings you the joys in life?"
"What is important to you to feel fulfilled in life?"
Palliative Care is about life. Palliative Care knows that regardless of illness, life continues to be a multi-dimensional experience. Palliative Care is transdisciplinary. It encompasses, well, it encompasses life.
We don't like to talk about palliative care in pediatrics cause well, for some reason we all think palliative care means someone is dying - well guess what - WE ARE ALL DYING. Every single day, every single minute - some of us are just doing it faster than others.
Thanks to this conference my focus in advocacy for this year is going to be an expansion of Palliative Care practices happening in pediatric medically complex patients AND their families.
I can't help but think if I had the opportunity to get the level of care provided by a palliative care model many things in the care of Alexandra would have been much more streamlined and so much more enjoyable. Heterotaxy wouldn't have defined her, it would just be a condition she has.
Will you join me on this journey? This journey will be about life. Not about sickness or death. It will be about living life the best way we all can, and finding joy in each and every day despite the failings of health.
Palliative care is hollistic and spiritual.
For a long time I wondered where my place was in patient advocacy - and now I have found it.
I belong in the arena advocating for hollistic, complete care for medically complex children. Because palliative care will give these children the best quality of life available. If we aren't going to have the QUANTITY OF LIFE in a patient, let's have the QUALITY OF LIFE in a patient.
Will you join me?