radiocarbon acclimatize: How it all began: Founding the first US free-standing pediatric ...

Saturday, July 14, 2012

How it all began: Founding the first US free-standing pediatric ...

Teri Rose, the Medical Outreach and Community Relations Manager for George Mark, Jenny Blechman, MD (Stanford HPM Fellow), Barbara Beach, MD, Founder of GMCH and Fernando Kawai, MD (Stanford HPM Fellow)

It began with Jim. He was a big-hearted, courageous young man dying of cancer, and I was a young pediatric oncologist at the beginning of my career, not 10 years his senior. Jim simply wanted to die at home, in the company of his mother, away from the hospital where he had spent so many weeks and months battling his disease. Yet as hard as I tried, I wasn?t able to make his final wish possible. I had pleaded with the insurance case manager to agree to provide one shift of home nursing per day so that his single mother could have the support she needed to care for him at home. I argued that providing limited home nursing would cost much less than 24 hour hospital care, but was told flatly that that was not how the system worked.? In my utter frustration, anger and tears, I determined that there had to be a better way to provide more compassionate end of life care.

I was aware of the existence of some Children?s Hospice Houses in England which were providing end of life care and support in a home-like setting and quickly discovered that they provided much more than medical care and family support in the final weeks or months of a child?s life. They also provided respite care to allow families to take a break from the intense around the clock responsibilities of caring for an ill child, and bereavement support for grieving parents, siblings, and anyone else impacted by the child?s death ? a more holistic and compassionate way to support children and families facing this profoundly difficult journey.

By 2004, when George Mark Children?s House opened its doors as the first free-standing pediatric palliative care center in the United States, there were already more than 30 such ?houses? in the United Kingdom, and others in Canada, Australia and Germany. The movement continues to grow and there are now two more facilities in the United States (Ryan House in Phoenix, Arizona and Dr. Bob?s Place in Baltimore, Maryland).

?During the past eight years, we have learned much about the needs of children with complex chronic medical conditions which result in a shortened lifespan and their families. These children benefit from periodic out-of-home respite (as do their families) and a careful focus on pain and symptom management to improve their quality of life. At?George Mark, when prolongation of life is no longer possible or desirable, death can occur in a supportive, home-like setting with access to all the necessary medical interventions in the company of family and loved ones. No family is ever turned away for lack of insurance.

In addition, beyond our medical care, ongoing bereavement services including counseling, home visits, support groups and events held at George Mark are offered to all families without a time limit, allowing each person to grieve and heal in his or her own way and at an individual pace. This is a powerful and effective model of care, and growing in popularity both here and abroad. Co-founding and working at George Mark these past eight years has shown me that while we cannot prevent the inevitable, we can provide a level of care and support to children and their families that enables them to make the most of the time they have together. When death approaches, we can help families manage it on their terms, with the support they deserve.

"At George Mark Children's House, no family is ever turned away for lack of insurance." says Dr. Barbara Beach, Co-Founder and core faculty of the Stanford Hospice and Palliative Medicine Fellowship Program