SAFETY NET: Jabbar with his mother Tamara Atwell at their Orlando home.
Four years ago, after two-and-half months of hospitalisation and more than 20 procedures had proven futile, Tamara Atwell took her son Jabbar home.
Jabbar’s body was freezing cold. He was purple. His pulse was low. He was comatose. Doctors told Atwell that there wasn’t much else they could do for her first-born, her angel, her two-year-old who was born with brain abnormalities.
“They said, ‘We’ll connect you with the palliative care team,’” Atwell recalled on a recent afternoon, while holding Jabbar in her arms. “They mentioned hospice and I said ‘Oh, no,’” she said. “The first thing you think of when you hear hospice is that he’s going to die.”
But then she met Dr Blaine Pitts, one of the few board-certified paediatric palliative care specialists in the area, whom she credits to this day for keeping her son alive and happy.
“Jabbar is a nice example of how by not pursuing invasive intervention we actually promoted the child to live longer and have a better quality of life,” said Pitts, who has created Central Florida’s only palliative care team at Arnold Palmer Hospital for Children.
Pitts and other experts say that palliative care is one of the misunderstood areas of medicine. While the public might view it as only end-of-life or hospice care, it has a much broader application and should start at the time of diagnosis for complex or life-threatening conditions such as genetic disorders, cancer, or heart and lung conditions.
“Palliative, if you look up the meaning, is Greek and it means to relieve,” said Dr Clifford Selsky, a paediatrician at Family First Pediatrics in Winter Springs and a board-certified palliative care specialist. “So it’s relief on a daily basis whether it’s from nausea, dry skin or pain. It’s relief from unpleasant symptoms ... the whole point is to ease physical and psychological suffering.”
It’s the common thread that connects multiple specialists and provides support for families.
“It’s the umbrella and safety net,” said Kelly Eberbach, a clinical nurse educator at Nemours Children’s Hospital, who focused her doctorate research on palliative care. Pitts, meanwhile, soothes Jabbar’s pain and discomfort and doesn’t stop Atwell from giving her child life-sustaining medications.
Today, Jabbar, who is blind, takes six medications that control a range of conditions, including asthma. But if he’s in pain, there’s morphine. And his mother has decided: no more surgeries.
As part of the Arnold Palmer palliative care team, every few weeks, a music therapist drops by the house and lets Jabbar enjoy the music of the world he cannot see. A chaplain comes by and lends Atwell a listening ear. AnnaMaye Clonts, a paediatric hospice nurse with VITAS Healthcare and Amie Deak, a care co-ordinator at Arnold Palmer, have become her friends and support network.
A true palliative care team, like the one at Arnold Palmer, is led by a board-certified palliative care specialist such as Pitts and includes nurses, social workers, music therapists and a chaplain. Established programmes like the one at Akron Children’s Hospital, where Pitts trained, have more than a dozen team members.
Other hospitals here also provide palliative care, but none has a dedicated team led by a palliative care specialist.
There’s a local and national shortage of palliative care specialists and dedicated teams in the US, especially in paediatrics.
“It’s a shortage wrapped in a shortage,” said Dr Ben Guedes, a paediatric intensive care specialist and medical director of Co-ordinated Care for Kids at Florida Hospital for Children, a programme that encompasses paediatric palliative care.
There’s one palliative care physician for every 1,200 patients with serious or life-threatening diseases, according to data compiled by the Center to Advance Palliative Care.
It doesn’t help that palliative care is not a source of income for hospitals and health systems. It’s not a procedure-based service and it doesn’t generate high reimbursements.
“When you look at it black and white, it’s not a money maker, but if you look at it from a programme perspective, it’s the right thing to do,” said Cary D’Ortona, CFO and COO at Arnold Palmer.
Access to palliative care varies by location. In a state-by-state report card, the Center gave Florida a C for access. Late last year, Florida Surgeon General Dr John Armstrong appointed a palliative care committee, which included Pitts, to advise the department about services and initiatives.
Research shows that early intervention with palliative care improves patients’ and families’ quality of life, regardless of the outcome. “That way the family gets to know us, and we become part of the treatment team,” said Selsky. “If they get better, you’ve made a friend; and if not, at least the family doesn’t have to deal with new people” when it comes to hospice care. “No one should approach end of life in a state of turmoil,” he said.
Pitts came into Joseph Nuwayhid’s life toward the end of the eight-year-old’s battle with leukaemia.
“He gave us his personal phone number,” said Joseph’s mom, Mervat. “He came in before Joseph passed away and he looked over his medications and stayed over an hour and made sure we were comfortable.”
Cancer had spread all over Joseph’s body and his pain could be severe. But palliative care, which at this point had become hospice care, comforted him. “Instead of worrying about my son all day and I knew he’d be OK and we’d be able to have some memories together,” said Nuwayhid. “His passing was a bitter pill, but they made it easier to swallow.” — Orlando Sentinel/TNS