A physician, a philosophy, and the future of healthcare for seriously-ill children.
By: Paola Bruni
“This is Moriah: she’s been here for 360 days,” Dr. Lorry Frankel explains as we stop outside the entry to Moriah’s room. “At 24 months, she’s never been out of the hospital for more than a few days here and there.” Moriah’s home-away-from-home has been the cardiac unit at Lucile Packard Children’s Hospital, a world-renowned center for pediatric care nestled in the grassy knolls of suburbia in Northern California. Born with a congenital heart condition, Moriah has been precariously balanced between life and death since day one.
I find myself staring. Moriah is cherubic. Her golden skin, round features, and mop of black curls stand out against the antiseptic white of her hospital bed. She appears immobilized by a veritable squid of feeding tubes and breathing apparatus. Monitors beat out a constant rhythm, reminding me that the plastic menagerie is keeping Moriah alive. Her almond-shaped eyes reflect her world like dark pools. I wonder if she knows what she is missing, if somewhere in that tiny body there is a latent impulse to go racing into the sunlight. Will she ever be normal? Is this a reasonable quality of life for a child? What is pediatric palliative care?
Dr. Frankel is chatting with Moriah’s mom who is camped out with a book at her daughter’s bedside. His easy banter is telling. As a pediatric intensivist, much of his twenty-seven year career has been spent here, treading the halls of suffering and healing. Dr. Frankel is an elegant man with a graying beard and gentle eyes. His large frame and broad shoulders aren’t intimidating. He greets everyone we encounter on our tour with a broad smile and a few words—parents, nursing staff, and physicians. Iconic in his presence at the hospital, and well known for his controversial stance on palliative care for children, Dr. Frankel is no slouch when it comes to sensitive issues and promoting healthcare reform. “Moriah will never be able to live without some sort of technology to help her breathe and eat,” he offers as we move on. “Her parents aren’t willing to consider a palliative option: comfort care without any medical intervention. That would mean removing all of the equipment that is keeping her alive. They are still hoping for a miracle.”
As pediatric care has evolved in the last 30 years, more children than ever are surviving from previous life-limiting and life-threatening diseases. Mortality in children of all ages is down 30-50% in the last 25 years. Innovations sustaining life include improvements in surgical techniques, pharmaceuticals for better anesthesia, improved medical therapies including critical care, newer vaccines and antibiotics and child safety laws.
The result is an estimated 500,000 children in the U.S. living with a chronic medical condition, some of whom are dependent upon technology for nutritional, ventilatory, or cardiovascular support. Despite changes in mortality, approximately 51,000 children die each year. The majority of these children are under one year of age and most, but not all, die in the hospital setting (often in the Intensive Care Unit) and a great distance from their homes and extended family and friends.
Pediatric palliative care has emerged during the last 10-20 years to assist in the care of children with complex medical problems. “The integration of palliative care for children is important when a cure is not probable, or when cure is an unrealistic goal for the child and family,” says Dr. Frankel. “I’ve always tried, and I still do, to look at organ failure and how to best support the child and family. What is the likely outcome for this patient? Will a child return to a normal lifestyle? For ninety percent, the answer is “yes.” Five to ten percent will never recover.”
As an offshoot of the hospice movement of the 1970’s, palliative care has become a necessary adjunct to traditional medicine. It is a tool that can be used to facilitate decision-making, provide counseling services to parents and family members, and support the health care team during the most difficult times.
“Getting people on the same page is one of the greatest challenges pediatric physicians face,” comments Dr. Frankel. “There are major hurdles. When a child is in intensive care, our goals are for the next hour, for the next day, for the next week. We are constantly revisiting the question of curative intervention and working to sustain the comfort of the child. As professionals, we have to examine the overall case, and we are morally and professionally obligated to provide all of the options. At the end of the day, families have to solve the problem, but we must do what we can to lessen the burden.”
For Dr. Frankel, embodying the philosophy and practice of pediatric palliative care has become an avocation. “Palliative care is about decision making that compassionately considers the desires of the child, the wishes of the parents, and helps to identify community resources that can help meet their needs,” he says. “It asks the question, ‘Is this just about survival, or is it about quality of life?’ As pediatric physicians, we must focus on making sure the child can grow and thrive. Families need support to undergo the psychological adjustments necessary to care for a sick child. And, we need to advocate for a healthcare system that supports the development of care plans that can define treatment.”
Complexities surround the often criticized and morally confusing issue of pediatric palliative care. Accepting pediatric palliative care into the healthcare continuum at diagnosis or early in the course of treatment is still a conundrum for many clinical professionals. “Palliative care is extremely important, but it has an unfortunate connotation for so many people,” observes Dr. Frankel. “We’ve considered changing it to comprehensive care, but my colleagues say, ‘Does that mean I’m not already providing comprehensive care?’”
“Palliative care, whether for an adult or a child represents a fundamental shift in a medical culture that considers “cure” the only reasonable outcome. “Palliative care is still on the fringe,” Frankel comments. “As professionals, we are still largely focused on healing. Physicians are still reluctant to discuss palliative care options because it means we have failed. As doctors, we treat disease. We don’t allow our patients to die. We hope to find a cure. At the same time, palliative care isn’t just for the terminally ill. It can be a support structure for both the family and the clinical team throughout the care trajectory.”
As Americans, how we value life and accept death, especially the death of a child, can inhibit access to the type of comfort-based support that palliative care offers. Religious and spiritual systems of faith and belief also come into play as potential obstacles. Plus, as Dr. Frankel states, “We need to put our money where our mouth is. Reimbursement for palliative care is essential. Public and private payers need to agree that concurrent curative and palliative therapies are important, especially when the patient is a child. And we need civic leaders to address this issue responsibly and not summon irrational behavior by referring to palliative meetings as death panels.”
The future of pediatric palliative care is uncertain, but inroads are being made to ensure the long–term efficacy of this compassionate approach. “Medical schools need to train our next generation of clinicians in palliative care,” offers Dr. Frankel. "We need the clergy to address this issue. And we need demonstration programs to show how helpful palliative care can be. People need to understand that palliative care is not ‘giving up’, it is giving ‘appropriate care’. A non-curative approach to a patient, especially when the patient is a child struggling against extreme circumstances, should be initiated as part of a comprehensive plan of care. In this way, a family will receive support with decision-making regarding their child’s care from the point of diagnosis. Most of pediatric palliative care is finding out what families really want. Our job is to bring the focus back to the patient.”
We pass doorway after doorway in our trek through the cardiac unit. Each is different. Some rooms are elaborately appointed, with brightly colored pictures adorning the walls and a zoo’s worth of furry toys tucked into corners. Others are barren. Yet no matter the décor, little heads peak from beneath blankets, hospital rails glisten and a chorus of sound tells me that hearts are still beating. I can’t help asking, “Dr. Frankel, don’t you ever get tired?”
Dr. Frankel stops in front of the elevator. His brow furrows. “I’ve learned to compartmentalize,” he says. “I play golf, spend time with my family and friends. It didn’t used to be that way though.”
“So what is your vision for the future,” I ask. Dr. Frankel replies. “I see palliative care becoming a mainstream integral component of medicine that embraces healing even when there is no cure.”
Dr. Lorry Frankel, Emeritus Chief of Critical Care Services, Lucile Packard Children’s Hospital based in Palo Alto California. He is also a Board Member of the Children’s Hospice and Palliative Care Coalition.
Children’s Hospice and Palliative Care Coalition and Coalition for Compassionate Care of California are partnering to develop a program to train pediatric care teams in having meaningful end-of-life discussions with families of seriously-ill children, and utilizing POLST to document wishes for treatment. CHPCC/CCCC will adapt the existing POLST curriculum to reflect the specific needs of pediatric care providers. The project is being funded by the California HealthCare Foundation.
The primary goal of this project is to provide pediatric patients and their families with access to quality, compassionate end-of-life care. By training pediatric care professionals to facilitate meaningful conversations about treatment options and goals of care, families with seriously-ill children can make informed choices and healthcare professionals can provide treatment that is line with those preferences. An outcome of the program will be the development of POLST leaders in the pediatric care community who can then train and mentor their peers. A final version of the pediatric program will be available in the Fall of 2011 with a minimum of three trainings scheduled for Winter 2011 and Spring 2012.