A recently released TED Women TED Talk by Kathy Hull, founder of the first freestanding paediatric palliative care centre in the United States, eloquently describes her reasons for opening George Mark Children’s House in 2004, speaks about the improved quality of life experienced by the children and families who use the facility and asks why there are only 2 freestanding paediatric pallaitive care centres in her country. The talk received a standing ovation.
Kathy Hull is a paediatric psychologist who had spent many years in a paediatric intensive care unit sitting with families with children at the end of life. Acutely aware of the harsh surroundings in which this often traumatic event took place, she recognised an unmet need for a more supportive medical model, and setting, for children at the end of their lives. Her research of pediatric care modalities convinced her that a well-established prototype of paediatric palliative care existed throughout Europe and could be replicated in the states.
Hull managed the design and building of the George Mark Children’s House (GMCH) and the House opened in 2004 in San Leandro, California, where it’s set on five beautifully landscaped acres. Since opening its doors, more than twelve hundred children and their families have been lovingly cared for by the staff of GMCH. Additionally, George Mark has served as the role model for sixteen other entities currently under development throughout the United States.
Hull describes GMCH as calm and nurturing place where both children and their families are comfortably accommodated.
The elephant in the room
Referencing the ‘elephant in the room’ Hull says that very few people want to talk about death and even fewer about children’s death. “The loss of a child is not only frightening but can be terrifying and debilitating. Impossible.”
She goes on, “What I’ve learned is this. Children don’t stop dying just because we the adults can’t comprehend the injustice of losing them. And what’s more. If we can be brave enough to face the possibility of death we gain an unparalleled kind of wisdom.”
She goes on to describe how the restful atmosphere, good food – often made to a child’s particular needs and tastes – close contact with therapy pets (including occasional visits by a camel) children often outlive their prognosis.
She describes children’s respite and hospice care as a critical component missing from the US’s healthcare landscape despite GMCH being able to provide this care at one third of the cost of ICU.
In comparison, the UK with just one fifth of the population of the States has 54 hospice and respite centres. Trying to find a good reason for this disparity, Hull wonders if the American ‘can do’ attitude makes them think that their medical care system will ‘fix everything’ and will go to extraordinary measures to keep children alive instead of recognising that there are times when the kindest thing to be done is to allow them to experience a peaceful and pain free death. She reminds us of the often quoted words of an affected father, “There are a lot of people to help you bring children into the world but very few to help you usher a baby out.”
Hull ends her powerful talk with the reminder that we do not keep children safe by pretending that death doesn’t exist. She asks us to remember that we may not be able to change the outcome but we can change the journey.
Presently, Dr. Hull is the staff Psychologist and President of the Board of GMCH, as well as being an adjunct staff member at UCSF Benioff Children’s Hospital Oakland.
Among the honors Hull has received for her philanthropy and humanitarianism are Maria Shriver’s Minerva Award; Traditional Home Magazine Classic Woman Award Purpose Prize Fellow and Jefferson Award. She is also a Regent Emeritus of Santa Clara University.
Click here to watch the full TED Talk.