~ Student Comfort and Family Guidance Mark New Pilot Program Created by hospice on 2/7/2013 2:42:24 PM
Teachers, Students, Families ─ and Samaritan ─ Partner to Coordinate Care
Maureen Tucker was in the audience when Samaritan Healthcare & Hospice held its 2010 educational conference on end-of-life issues from a Catholic perspective at the St. John of God Community Services’s Westville, NJ campus. Her son Mark, then 19 years old, had been a student at St. John’s School for Special Children since he was in elementary school.
She listened intently to the day’s speakers and paid particular attention to the knowledgeable physician on the closing panel who took the time to speak with her after the session. Mental note to self, she thought: This gentle but straight-talking doctor might be one to keep in mind when Mark’s chronic condition progressed.
In January 2012, Mark’s cerebral palsy and seizure disorder took inevitable turns for the worse. With the encouragement of Brother Thomas Osorio, OH, Prior of the Hospitaller Order of St. John of God, Maureen reached out to Samaritan. She learned of Samaritan’s new program called Palliative Medical Partners headed by the very same Dr. Stephen Goldfine -- Samaritan’s Chief Medical Officer -- that she had spoken with two years earlier. The program offers palliative (pall-ee-a-tiv) consultations aimed at relieving pain, controlling distressing symptoms and providing supportive guidance for family members struggling with difficult care decisions.
Mark, sadly, passed away in June. But Maureen remains grateful for the support Dr. Goldfine and Samaritan provided her family. "From the moment Dr. Goldfine entered our home, I knew all would be well,” she said. "The gentleness of Dr. Goldfine and the concern he had for all of us gave us the courage and time to enter into this new chapter in our family."
That comfort and support extended to St. John of God’s staff as well. Kristin Krumm, Mark’s Occupational Therapist said, “Dr. Goldfine… met with all of us involved in Mark’s care. I was so impressed at how gentle and sincere he was to all of us. He spent as much time as we needed answering questions and encouraging us.”
The Impact of Palliative Medical Care
In an ideal world, children would be born healthy and live long, vibrant lives. Yet, we know too well that many children are born with, or develop, life-limiting health challenges that can create overwhelming physical, emotional and financial strain for the families who love them.
Now, thanks to Samaritan’s new pilot progam, St. John of God will partner with experts from Samaritan to help coordinate care and services more fully, announced Bro. Tom.
Based upon the Tucker family’s positive experience at a most difficult time in their lives, Bro. Tom and Samaritan now offer this care to more of St. John of God’s students and families and will provide ongoing training and support for its educational and therapeutic staff. “We are offering our children, our families and our staff an extra layer of support from an organization we trust,” he said.
Dr. Goldfine, who is Board Certified in both Family Medicine and Hospice and Palliative Medicine, welcomes this opportunity. “When a child lives with a serious chronic condition, the life of his/her family changes forever. Caring parents need reliable information -- and someone who will take the time to explain it. They want support through difficult decision making. Children and teens need expert relief from the pain and symptoms that can accompany their conditions or the treatments aimed at curing them. Palliative medicine can help. By relieving pain and managing symptoms before a child needs hospice care, we are opening new opportunities of communication with families,” he explained.
Addressing a National Need
While ongoing strides have been made nationally to improve end-of-life care among adult patients, there is still much work to do to improve comfort care on behalf of children and their families. The Initiative for Pediatric Palliative Care (www.ippcweb.org) writes, “Too many children undergo painful procedures and suffer from the symptoms of advancing disease without adequate relief, despite the fact that modern medicine has the means to relieve their pain and improve most symptoms.”
Samaritan’s palliative and hospice care programs, said Dr. Goldfine, are helping to meet the biggest challenge in American medicine today: “To provide the right level of care at the right time. Our care should not be driven first by what technology exists, but rather by what are the patient’s and family’s goals.”
Sr. Kathy McShane, SSJ, Coordinator of Pastoral Care at St. John of God, said, “ This team approach to serving children and adults with special needs has been a resource lacking in the care at end of life for our population. At the same time, one would think that Samaritan and St. John of God have been providing this team approach for years as the mission of both organizations upholds the dignity and blessedness of our special children.”
Since Mark Tucker received care, the Samaritan-St. John of God pilot program has reached out to help other children with very positive results in the midst of every parent’s worst nightmare.
Arleen Nanni, mother of a former St. John of God student, said, “When we made the decision to place Michael on Palliative Care, Bro. Tom told us about Samaritan. I was so scared but so happy to meet people who cared as much as my family did. Chaplain Chuck [a Samaritan hospice chaplain] was wonderful in every way. He calmed our fears and allowed us to come together as a family to honor the moment It was beautiful that Bro. Tom and Chaplain Chuck came together to serve at Michael’s funeral service.”
Brother Tom hopes this innovative pilot program will serve as a model for other schools for children with Developmental Disabilities. He said, “At the bedside of one of our adult clients served also by Samaritan, his father came to me and said, ‘This is how I imagine heaven to be -- enfolding us all into the embrace of the One who created us.’ To me, that said exactly what we are about -- allowing others to fear no more and celebrate the life given in love, through those who truly love every day.”