“Food, toys and love are what we need to live.” (1)
Pediatric palliative care is a new frontier in the care of seriously ill children. There are many fearful misconceptions about palliative care; thus understanding what it means is an important starting point.
Here is what pediatric palliative care is NOT:
- It is not the same as or equal to end-of-life care, imminent death or hospice. Although end-of-life care may be a part of palliative care, its overall reach is far broader.
- It is not only for children with cancer; it is care for children with many different types of illnesses.
A comprehensive definition of pediatric palliative care includes the following: (2)
- Care for infants, children and adolescents who are living with serious chronic or life-threatening conditions. Palliative care may extend over many years.
- An active and total approach, embracing physical, emotional, social, and spiritual elements.
- Provision of optimal quality of life for the child and support for the family, especially the healthy siblings
- Focus on decision-making and establishing goals of care for the child in the present and into the future.
- Management of symptoms to ensure the child’s optimal comfort at all times
- Provision for respite
- Assistance with transitions between hospice and home
- Anticipatory guidance for the family if the child is dying
- Continued care of the family during bereavement
- Support for the professional staff who are caring for the child
“Food, toys and love” gives us the child’s version of the definition of palliative care in fewer and more vivid words: food — for nourishment and medicines; toys — for learning and play; and most importantly, love — the relationships with family, friends and the caregiving staff.
Living with the “uncertainty of prognosis” is common to the experience of children with serious and life-threatening conditions and their families. This uncertainty is depicted in the following drawing and commentary: (1)
A seven-year-old child had been successfully treated for her disease as a toddler. She was now being investigated for the possibility of a recurrence. Throughout the days of testing, she drew a series of vivid rainbows. Each one was placed centrally on the page, as a fulcrum between the sun on one side and slashes of rain on the other. She explained her drawing matter-of-factly: “I don’t know which side of the rainbow I am on.”
A palliative care team, in collaboration with the child’s primary team, provides consultation for children and their families under many circumstances, in many styles and for many reasons. An important and effective model for pediatric palliative care is one of “concurrent care,” whereby disease-oriented therapy (with curative or life-prolonging intent) is offered along with palliative treatment (including management of symptoms; help with decision-making; focus on the child’s quality of life.) Concurrent care offers the child and family the benefits of both avenues (“and”) instead of the traditional forced choice of “either / or.” As such, palliative care can be seen as an added layer of support for children and families.
Here are some examples:
- Parents of an infant just diagnosed with a serious neurological condition asked to meet with the palliative care team. “We are not at the point of having to make decisions now for our child – but we will be in the next few years. We want to meet with you now to understand what the options may look like further down the road.”
- A child with a serious chronic illness was determined to attend school as much as possible, despite significant discomfort. Consultation with the palliative care team was around symptom management: how best to combine medications and psychological techniques (e.g. self-hypnosis) to optimize the child’s daily functioning.
- An eleven-year-old child explained to one of her nurses: “One side of my head says: “Think optimistic.” The other side of my head says: “But what if this treatment doesn’t work?” The parents requested that a psychologist on the palliative care team meet with their daughter and then provide them with guidance on how to talk with her about her disclosure.
- Parents may face daunting decisions about how to proceed with a child’s treatment when there are no “easy” options. The palliative care team was consulted to meet with the parents to discern their understanding of their child’s condition and clarify their goals of care. After meeting with the parents, the palliative care team was able to serve as a “communication bridge” between them and their team as they worked together toward a treatment plan for the child.
- A conflict arose between the medical team and the parents when their child was in the late stage of an illness that would lead to his death. The team, realizing that further treatment would not alter the course of the disease and would likely result in the child’s suffering more, did not want to introduce any further disease-related therapy. Although the parents understood the poor prognosis, they wanted all possible treatments to be pursued. The palliative care team listened closely to the family, to their wish to leave no stone unturned. It was evident to the palliative care team that with a little more time and guidance, they would be able to arrive at the decision to forego disease-related therapy. The palliative care team was able to “negotiate” a short-term compromise: the medical team would continue treating the child’s disease while the parents agreed to aggressive symptom management to minimize the child’s suffering. Within a week, the parents elected to do only comfort care and to bring the child home on hospice.
- A child was about to undergo a treatment that would entail prolonged hospitalization. Although there was a hope that the treatment would lead to cure, there was also the possibility that it would be unsuccessful or even result in the child’s death. The parents asked the palliative care team to meet with the healthy siblings proactively to identify their concerns so that they would be better able to support them.
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“Thank you for giving me aliveness.” (1)
These words, spoken by a five-year-old child, capture the essence of pediatric palliative care: to enhance a sense of hope and vitality in children and their families even under extraordinarily difficult circumstances.
(1) Sourkes, B. (1995) Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. University of Pittsburgh Press.
(2) ACT. (2003) Adapted from: A guide to the development of children’s Palliative Care Services.
Barbara Sourkes PhD, a pediatric psychologist, is the Kriewall-Haehl Director of the Pediatric Palliative Care Program at Lucile Packard Children’s Hospital Stanford, and Professor of Pediatrics at Stanford University. In addition to many articles and chapters, Dr Sourkes has written three books and co-edited a textbook – all related to the psychological impact of illness on the child and family. She is the recipient of the 2011 Outstanding Clinical Care Award from the American Psychosocial Oncology Society; and the 2014 Humanities Award from the American Academy of Hospice and Palliative Medicine.