British infant puts eye on end-of-life options
Scott Maurer goes to work every day knowing that he’ll be doing the important but hard work of caring for children at the end of their lives.
“The hardest part of the job is also the most privileged: to bear witness to the suffering,” he said.
He is the chief of the Division of Palliative and Supportive Care at Children’s Hospital of Pittsburgh of UPMC — the only institution providing this specialized care for children in Western Pennsylvania. The program started in 2003, and Dr. Maurer joined in 2010 as its first medical doctor. A second doctor will join the staff next month.
“The people who do this work are called to it,” he said. “The work chooses us.”
Hospice care neither hastens nor prevents death, Dr. Maurer said. It involves stopping all curative treatments and prioritizing patients’ comfort when they have six months or less to live. Palliative care also prioritizes a patient’s comfort, but curative treatments continue.
Sarah Friebert, the director of the division of pediatric palliative care at Akron Children’s Hospital in Ohio, emphasized that hospice care is not about death or giving up. “This is the kind of care that anyone would want for a loved one with a serious illness.”
Pediatric hospice and palliative care is in the spotlight because of the highly publicized case of Charlie Gard, an 11-month-old from the United Kingdom who suffered from mitochondrial depletion syndrome, which had caused severe brain damage and muscle weakness that left him unable to breathe on his own. Charlie died Friday.
His parents waged a legal battle to get him experimental treatment, which doctors believed would cause pain and would not be successful because of the infant’s deteriorated condition. This week, his parents sought permission to take Charlie home while on life support, which the hospital denied due to costs and inconvenience. A final decision on Thursday ruled that Charlie would be moved to a hospice without continuing life support against the parents’ wishes.
Although the British government has the authority to make decisions about end-of-life care, such choices are left to families in the U.S. This would make a case like Charlie’s “highly unusual” here, Dr. Maurer said.
That doesn’t mean that making decisions about end-of-life care for children is easy.
Dr. Maurer gets involved with cases early to build trust with families. His team works with the family to understand their values and the child’s prognosis. They then create goals of care that align with both considerations. If or when a child needs hospice, the families have choices — staying at the hospital, moving to The Children’s Home of Pittsburgh & Lemieux Family Center in Bloomfield or returning to their own home, which is the most common choice.
For families who choose to return home, Dr. Maurer’s team connects them with an outside agency for a hospice nurse. Many hospice providers don’t have much experience working with children, because very few children need this type of care. Dr. Maurer’s team remains a constant support, with at least one staff member on call at all times. They field calls from the nurse about proper dosage and listen to the family’s concerns, often using a hospital-provided iPad for conversations under a secure connection on its video camera.
“The hospice nurses are our eyes and ears on the ground,” Dr. Maurer said. “That gives families a ton of peace of mind, knowing that they won’t be abandoned.”
Sometimes a family wants something that isn’t medically advisable or that doesn’t align with a patient’s prognosis. Dr. Maurer’s response is to get closer with the family — closer than adult hospice providers typically get with patients and families. He believes that families will turn to him and ultimately choose what is best for the child.
“I can understand their suffering and help them through it,” he said.
Dr. Maurer decided to enter the field early in his career. He saw a need for pediatric palliative care while working with children who had cancer as an oncologist — the children wanted to go home, and he wanted to help them.
Pediatric palliative care is still rare, but it has grown in the past 15 years, said Jon Radulovic, who works at the National Hospice and Palliative Care Organization.
A 2013 survey showed that 69 percent of Children’s Hospitals across the U.S. have palliative care options specialized for children, but sometimes this means just one part-time worker. More recent data on the programs is scarce. Mr. Radulovic said the growth of pediatric palliative care programs is in part due to a provision in the Affordable Care Act that allowed individuals to pursue curative and palliative care at the same time.
One of the biggest factors differentiating end-of-life care for children and adults is just how devastating the death of a child is, often affecting an entire community, Dr. Maurer said. This means that palliative care for children must also strive to support families. The bereavement program at Children’s Hospital includes a support group for parents and a summer camp for siblings.
And family members aren’t the only ones affected: Doctors also struggle.
“We support each other,” Dr. Maurer said. “We create a community.”
Knowing how emotionally draining this work can be, he said that he feels sad not only for Charlie Gard’s family but also for his doctors, who he believed also wanted the best for the infant: “I know they are suffering as well.”