Carl Sandberg notes: “Children are born with rainbows in their hearts and you’ll never reach them unless you reckon with rainbows.” Parents of children facing life-threatening diseases or potentially life-limiting medical conditions know only too well how challenging it is to reckon with those rainbows and strive for quality medical care and life experiences.
It is impossible to imagine a parent’s response to the words “your child has cancer” or “your child will be faced with multiple surgeries to repair a congenital heart disease” or “your child’s organs are not working properly and organ transplant surgery is advised.” These medical diagnoses do not merely involve the parent and child, but also the entire family unit, extending to siblings, aunts, uncles and grandparents.
The patient may face weeks, months or even years of living in the hospital. Parents of medically fragile children can also attest to the complexities of dealing with home ventilators, tracheostomies, tube-feedings, monitors and other equipment that transform a home into a small hospital. Parents must struggle with financial challenges, navigating an incredibly complex world of insurance and health care providers, medical decision making and the incredibly stressful feeling that they have ultimately lost control of keeping their child safe and protected.
Pediatric palliative care is a comprehensive, family-centered approach to care that is focused upon caring for the physical, emotional, social and spiritual needs of these children and their families. The aim is to allow children with serious, life-threatening illnesses to maximize quality of life and to facilitate medical decision making based on the goals and values of the patient and family. It is a component of care that is provided by all members of a medical team and one in which the American Academy of Pediatrics says “should be offered at diagnosis and continued through the course of illness, whether the outcome ends in cure or death.”
A stark reality facing children with life-threatening illness, their families and those caring for them is that despite incredible advances in science and technology, medical care has limitations. Yet we have the ability to provide pain and symptom management to facilitate certain goals of care. This is accomplished through a network of providers who are involved with the palliative care of the patient.
First and foremost, the patient, parents and siblings are the leaders of the team. Other key providers include the primary care physician, registered nurse or home health nurse, social worker, child psychologist, child life specialist, pastoral care, case manager, school tutor, physical/speech and occupational therapists, and sub-specialty physicians.
To ensure that an ill child’s quality of life experiences are maximized, parents should:
▪ Persistently ensure that communication is maintained between the many medical caregivers.
▪ Advise the medical team if they are confused about any medical information.
▪ Make certain that records of hospitalization and clinic visits are shared with the primary care provider.
▪ Carefully review medication lists and remind providers of any new adverse medication reactions or allergies.
▪ Document names and contact numbers of subspecialty physicians, and keep records of planned follow-up appointments.
▪ Ensure that there is communication between home health providers and the primary care and/or subspecialty physicians.
▪ Share thoughts and personal assessments with the health care team.
▪ Relentlessly seek community resources. There are many organizations, camps and volunteer groups that exist with the prime mission of ensuring that medically-fragile children live to their full extent.
▪ Seek parent support groups, and ask subspecialty physicians to recommend support groups.
▪ Do not be shy about expressing your concerns and fears. Sometimes the medical providers may not ask the right questions to facilitate such discussions.
▪ Ask about the availability of palliative care specialists and other disciplines, including child life, child psychology, social work and pastoral care.
▪ Seek online resources, such as http://getpalliativecare.org/, www.floridahospices.org/hospice-palliative-care/about-palliative-care and www2.aap.org/sections/palliative/parentresources.html.
Palliative care is the key to reckoning with your sick child’s rainbows. It has enabled many children who are experiencing prolonged illnesses to actually get outside for a walk to experience sunshine and the breeze, attend a prom, go on a day trip to the beach, attend local sports events and interact with revered musicians. This attention to emotional support, along with intense medical care, can foster hope and bring smiles and laughter, most often exceeding even the best prescribed medicines.
G. Patricia Cantwell, M.D., is professor of clinical pediatrics and Director of the Division of Pediatric Critical Care Medicine at UHealth – University of Miami Health System, and Kim Juanico, RN, BSN, CHPPN, is Nurse Coordinator of PediPals Program at Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center. For more information, visit UHealthSystem.com/patients/pediatrics.