From Kristin Lynn
Dr. David Dickens vividly remembers diagnosing his first child with cancer. The year was 1999 and the newly minted oncologist had just begun his fellowship in pediatric hematology and oncology at the Cincinnati Children’s Hospital Medical Center. His patient died – “and it was not a comfortable death,” Dickens recalls.
About that same time, a paper published by a group in Boston showed this experience was, unfortunately, not unique. The paper concluded the majority of children who died of cancer died with pain and other untreated symptoms.
Those twin realizations galvanized Dickens’ resolve. “Of all the things we do in medicine, particularly in oncology, it became abundantly clear early on that if there’s something that we should do correctly, it’s end-of- life care with children,” said Dickens, who now practices at Helen DeVos Children’s Hospital. “I was in Grand Rapids doing pediatric hematology and oncology in 2003 when Hospice of Michigan came to our group looking for a medical director for its pediatric hospice program.
“It was a marriage between my interest and experience and a need that Hospice had at that time.”
That need, at first, focused exclusively on pediatric hospice – to provide care for those children for whom a cure was not possible. Dr. James B. Fahner saw that need so clearly when he moved to Grand Rapids in 1989 to establish the community’s first pediatric cancer program.
“Pediatric hospice has always been a rare and precious service that not many communities had the benefit of having,” said Fahner, who partnered with Hospice of Michigan to establish the pediatric hospice care program that has since been named in his honor. “Children are not little adults. The trajectory of a child’s illness can be very, very difficult to predict – there are sudden declines, changes in acuity and the uncertainty of when they will progress that make it very difficult to determine when hospice is appropriate.
“When a child is involved, you do not have one patient – you have an entire family constellation that includes parents, grandparents, siblings. They are all, in a sense, part of the focus of our care and support.”
Beyond Hospice: An Expansion of Pediatric Programs – As need and awareness grew, so did the demand for pediatric services. Hospice of Michigan developed two additional programs for those who fell outside the parameters of traditional hospice care: A perinatal program that provides emotional, social and clinical support to expectant parents as they prepare for a child who might not live through the pregnancy or survive long after birth.
A comprehensive support program that allows families facing the life-limiting illness of a child the opportunity to receive caregiver support, art and other therapies, help with errands, decision-making support and other services to help untangle the complexities of the world created by that illness.
In his years as medical director, Dickens has watched the numbers for traditional hospice double while perinatal has remained relatively stable. The real growth, he says, has been in the comprehensive support program that treats medically complex children, which has “exploded” and increased 10-fold since he started with Hospice of Michigan in 2003.
Dickens said that rapidly improving technology and medical advances have created the demand. Dickens and Fahner agree that philanthropy has fueled the growth of the services that Hospice of Michigan can provide.
“One of the game changers has been philanthropy,” Fahner explains. “These are labor-intensive and expensive programs to run, much of them not reimbursed by insurance. The fact that we have had very generous support has allowed us to expand the breadth and scope of services we provide.”
In the fall of 2015, psychotherapist and children’s advocate Jo Elyn Nyman gave a transformative gift that now serves as the anchor of a $25 million expansion of Hospice of Michigan’s pediatric services. The Nyman gift allows the organization to offer care services to children and families across the Lower Peninsula regardless of their ability to pay under a new umbrella program called The Jo Elyn Nyman & The Samuel & Jean Frankel Foundation Anchors Programs for Children.
As part of this expansion, Hospice of Michigan welcomed Dr. Kenneth Pituch, medical director of the Pediatric Palliative Care Program at the University of Michigan’s C.S. Mott Children’s Hospital, as the program chief. He joins Dickens, Fahner and more than a dozen nurses and social workers rounding out Hospice of Michigan’s “dream team” of pediatric palliative support and hospice care.
Pituch, too, has spent a significant portion of his career focused on the need for pediatric hospice and palliative care services, first at U of M, then as pediatric medical director for Arbor Hospice in Ann Arbor, where he has led the Arbor Hospice Pediatric team to care for more than 200 terminally ill children and their families over the past decade.
When Arbor and HOM joined forces in January of this year, the affiliation allowed him to expand his role and to serve even more children and families in Michigan as the Anchors programs expanded.
“There are hundreds of other children who would benefit from out-of- hospital services to make their lives better,” said Pituch, who spent four months last year touring the United Kingdom to learn more about their approach to pediatric hospice and palliative care. “Our reimbursement and supportive care services are not up to what we think they could be.
“That’s the dream – putting together a coalition of children’s hospitals, children’s hospice organizations, insurance companies, state government services for healthcare and philanthropy from generous donors for a comprehensive commitment to step up and do a better job of taking care of kids.”