“Palliative care? Isn’t that for people who are dying?”
“Palliative care means giving up and that is not what you want, right?”
These statements can oftentimes be heard coming from both families and healthcare professionals and represent the most common misconceptions regarding palliative care. So, what is palliative care and how does it help in the care of pediatric patients?
Pediatric palliative care is a specialty that aims primarily to relieve the burden of suffering for children and families living with any chronic, complex or critical illness. Although we tend to equate suffering only with physical pain, suffering can take many different forms. Emotional, spiritual and social stressors are all forms of suffering that a family may have to face with their ill child. Pediatric palliative care arose out of the need for improved emphasis upon a holistic and comprehensive medical approach encompassing body, mind and spirit.
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If we rightfully presume that there is a burden of suffering for children and families dealing with chronic or critical illness, it then follows that many children can benefit from having palliative care experts as part of their medical team. According to the National Hospice and Palliative Care Organization guidelines, palliative care should be considered for:
▪ Irreversible but non-progressive conditions/complex healthcare needs such as: children with cerebral palsy or neurologic impairment; children who require long-term intravenous nutrition; or children who are dependent on home ventilators and other technologic equipment.
▪ Progressive conditions without curative treatment options such as certain genetic conditions/chromosomal abnormalities; or advanced cancer.
▪ Life-threatening conditions in which attempts at curative treatment may fail such as acute severe trauma; extreme prematurity; or any sudden onset life-threatening illness.
▪ Conditions where early death is likely such as muscular dystrophies or any organ failure not amenable to transplant.
How can palliative care help in these trying situations? Any parent whose child has experienced serious illness and hospitalization can tell you it is a terrifying experience — the constant noise of medical monitors, the intense fear of not knowing what may come next, care providers rushing in and out of the room, and overwhelming medical discussions that, even when positive, do not necessarily bring comfort.
Pediatric palliative specialists seek to provide an extra layer of support for these families struggling to cope with their child’s illness by addressing the many different forms that coping can take, assisting them through the difficult decision making and, at the same time, focusing on symptom management to improve quality of life. In this way, physical symptoms such as pain, nausea, fatigue, insomnia and loss of appetite are all attended to on a personalized level. When illness is severe and chronic, pediatric palliative care seeks to guide the family in choosing therapies that confer benefit without undue burden. Risks and benefits of possible interventions and/or medications are evaluated carefully with the medical team to match the child’s and family beliefs and values.
Another common myth is that palliative care means “discontinuing all therapies and doing nothing,” which could not be further from the truth. In fact, palliative care can and should begin early in the course of illness and occur in conjunction with life-saving and life-sustaining therapies. When employed in this manner, palliative care helps patients and families navigate a complex medical system, pursuing needed therapies while maintaining what is most important to the child’s and family’s life. Early palliative care can even potentially extend survival in complex and chronic diseases.
To achieve these patient-centered goals, the palliative medicine team is comprised of many different disciplines working together to make tough times just a little more bearable. Child-life specialists come up with creative ways to engage hospitalized children in playing and learning. Pediatric psychologists provide support and coping skills to deal with the trauma of illness. Spiritual leaders of different religions support weary, uncertain families with prayer, meditation, and care of their inner life. Social workers are also important members of the team and relentlessly seek access to outpatient services to support children with complex healthcare needs.
In summary, pediatric palliative care aims to bring light to a dark time and a sense of peace. Although the journey can seem overwhelming and the disease process unrelenting, pediatric palliative care encourages families to pursue hope, joy, love and laughter each day despite the challenges brought by chronic illness.