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Pediatric palliative care centers growing in the United States
July 6th, 2012
07:30 AM ET

Pediatric palliative care centers growing in the United States

Editor's note: Dr. Barbara Beach is the co-founder and director of the George Mark Children’s House. Tune into Sanjay Gupta MD at 4:30 p.m. E.T. Saturday and 7:30 a.m. E.T. Sunday to learn more about pediatric palliative care in "The Gift of Charles."

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.

It was the early days of the modern “hospice” movement, which had begun in England in 1967 with the opening of St. Christopher’s Hospice by Dame Cecily Saunders, and which eventually blossomed into the larger field of palliative care.

More than a decade later, in the early 1990s, I encountered Meilani, a teen who was dying of cancer and who did not want to spend her final days in a hospital. Dr. Kathy Hull, a clinical psychologist and colleague of mine, also was a member of the medical team. It was then I learned she shared my dream of finding a different, more holistic setting for terminally ill children and their families to spend their remaining time together.

As we discussed our vision for an out of hospital setting in which to offer comprehensive end of life care for children and their families, the concept of what was to become George Mark Children’s House began to take shape. Kathy, a surviving sibling of George, who had died of cancer in a hospital at age 30 with poorly controlled symptoms, and Mark, who had been killed at age 16 in an accident, was passionate about expanding the range and scope of support services available to critically ill children and their families.

At the time, 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. Kathy and I traveled to several of them 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. We realized we had found the model we were looking for – a more holistic and compassionate way to support children and families facing this profoundly difficult journey.

By 2004, when George Mark 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.

One major obstacle we face in the provision of this model of care within the U.S. health care system is the lack of sustainable financing. At George Mark, we have expanded our services to include transitional care between hospital and home, which results in shortened inpatient hospital stays and greater on the job training and practice for the children’s parents and caregivers.

Transitional care empowers families to more effectively manage their child's health from home and maintain their child’s quality of life for as long as possible. It also is one of the admission categories which is often reimbursed by health insurance plans. In spite of data showing that care at George Mark results in significant cost savings, top quality care, and higher levels of patient and parent satisfaction, insurance reimbursement still covers only about one-third of the annual budget at George Mark, leaving us dependant on philanthropy for the remaining two-thirds of our operating expenses.

At George Mark 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.


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soundoff (14 Responses)
  1. Grandee

    Powerful. Taking care of our own. Powerful.

    July 8, 2012 at 07:48 | Report abuse | Reply
  2. ljhays

    An excellent example of how our "medical care" system uses patients as factors of production and why it needs to stop. We need more doctors like Dr. Beach and more facilities like George Mark where the focus is on holistic patient care and not on the bottom line.

    July 8, 2012 at 08:01 | Report abuse | Reply
  3. Willow

    Thank you Dr. Breach.

    July 8, 2012 at 08:58 | Report abuse | Reply
  4. Arlington

    Wonderful Dr. Beach and your staff. Thank you for the dedication. And ljhays, excellent comment on insurance controlling our medical needs, it is all for profit, not customer benefit.

    July 8, 2012 at 09:18 | Report abuse | Reply
  5. Simi

    So sad that we need this care.. but such a wonderful service for the families and the children...

    July 8, 2012 at 19:33 | Report abuse | Reply
  6. caliguy58

    Dr. Beach is an angel in my book. I can't think of any more worthy endeavor than providing proper end-of-life care for children.

    July 10, 2012 at 15:46 | Report abuse | Reply
  7. Becky

    I want to thank Dr. Beach for giving a voice to pediatric palliative care in the mainstream media and to these beautiful children and this amazing facility. I started volunteering at George Mark in December 2011 and have seen first hand the impact they have on families dealing with a very difficult time in their lives. When the parent of a deceased child comes back to visit the house weeks after their child has passed and shares a huge smile and hug with you, you know your time spent volunteering and being a part of the George Mark Children's House Family is all worth it!

    July 11, 2012 at 17:40 | Report abuse | Reply
  8. Rosie's Mom

    Dr. Beach was part of my child's medical team when she was being treated for cancer. I am thankful that the services of George Mark were not needed in our case, and my daughter continues to enjoy 12 years remission thanks to her excellent care back in the days when we could afford medical insurance. When our premiums hit $2800 per month two years ago, we could no longer afford it. I wish our whole nation could care for one another enough to provide medical insurance for everyone. So inspired by Dr. Beach's example of compassion and care.

    July 13, 2012 at 19:48 | Report abuse | Reply
  9. Name*Jim

    I visited George Mark Children's House with a corporate group evaluating volunteer opportunities for our employees. Without discussion, our group was unanimously in agreement. Geo Mark is without peer in mission and execution.

    July 16, 2012 at 21:49 | Report abuse | Reply
  10. FuneralProposal.com

    Thank you so much for sharing your powerful experience with us all Dr. Beach

    August 14, 2012 at 12:24 | Report abuse | Reply
  11. icon archive

    Quite right! I think, what is it good thought. And it has a right to a life.

    P.S. Please review Remove Icon from jpeger

    September 19, 2012 at 19:30 | Report abuse | Reply
  12. Sandy

    I love to read about Pediatric care. Thank you so much for sharing your experience with us. Keep it up..!!!
    http://www.pccsf.com/

    March 17, 2013 at 07:32 | Report abuse | Reply
  13. Sheila Blake (Halbmaier)

    Thank you Dr. Barbara Beach. You were my rock during Scotty's illness. You were Medical Student at the time. I think Scott may have been your first patient. You sat at his bedside all night the night before he died. I will never forget your loving care for our family and Scotty. I would not have made it through without you and all your help. They did not have a place for our family like this. What a wonderful thing you have done for the sick children and their families. We were all alone to face Scott's illness with no one to help us through but you. It has been forty years and I still cry for my Scotty. He was one of the happiest children ever. I can still hear his laugh. He always felt safe when you were near. Thank You. I will never forget you.

    August 3, 2013 at 22:35 | Report abuse | Reply
  14. long term care calgary

    Palliative care has a very effective result so it is very popular.
    http://aspencarecalgary.com

    December 23, 2013 at 01:28 | Report abuse | Reply

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