The central experience for families of dying children in the United States today is the experience of isolation. Childhood death has become so unusual that our communities have forgotten their rituals. The younger the child, the more true this is. Everybody knows how to respond to the death of an adult or even a teenager. But childhood death is different. When a child has a life-threatening illness, they are moved out of their own community and into the strange world of the tertiary care medical center. A child’s own pediatrician or family doctor is usually not involved in the care. Instead, critically ill children are usually cared for by doctors and nurses who never knew the child or family when they were well. Thus, children and their families rely almost entirely on the kindness of strangers.
Pediatric palliative care (PPC) programs are being created, supported, and explanded throughout the world. For some people, this may seem either paradoxical or a poor decision about the allocation of scarce resources. After all, childhood mortality rates remain unacceptably high in many countries in the world. In 2021, over 5 million children died before their fifth birthday. Certainly, one might argue, we should allocate scarce health care dollars towards programs designed to save lives, rather than toward palliative programs for dying children. But, like many arguments that seem to require an either-or choice, this one sets up a false dichotomy. It is because of the success of modern medicine with its’ astoundingly successful life-sustaining treatments that decisions about when to stop and how to care for the dying become an essential part of a holistic health system.
In this months issue of the journal Current Problems in Pediatric and Adolescent Health Care, we present reports from an inspiring group of leaders in the nascent field of pediatric palliative care. They come from rich countries and poor countries. They found their way into palliative care from a variety of different specialties and for many different reasons.
In each country, the circumstances and situations are different. Still, there are common themes. Most PPC programs faced skepticism and resistance at the outset. Palliative care began for adult patients. Pediatrics was often an afterthought. Yet, as the programs developed, they came to be more widely accepted. Physicians, parents, and policy makers all recognize that the medical and ethical choices that arise in the care of children with life-limiting conditions are complex and require nuance, technical expertise, skills at multidisciplinary collaboration, ethical sensitivity, knowledge of culture and religion, and emotional courage.
For the right person, palliative care can be the most rewarding medical specialty of them all. It calls upon the most primal instincts and relationships in medicine. It harkens back to the days in which medicine had known limits, in which the forces of nature reigned supreme, the powers of medicine to cure were limited, and the physician’s goal was first and foremost to provide comfort. In those days, as in palliative care today, the essence of the practice is to develop the deep personal relationships that grow as doctors and nurses and parents and aunts and cousins work together to bring healing to a family that is deeply wounded and, in many cases, a family whose faith has been tested.[1]
When a child has an incurable illness, family members might question their faith in God. Personal writing about such events is full of such questioning. These situations can also renew faith, as people feel the ultimate vulnerability that often motivates them to pray.[2] Such situations can also lead to a loss of faith in medicine and in professionals who, often, are not prepared to shift roles from the being curers to being healers. Martin Winkler summed up the attitudes of such patients in his masterful novel The Casebook of Dr. Sacks.[3] He wrote from the perspective of a doctor, studying his patients in order to try to imagine how his patients saw him: “It is clear from their faces,” he writes, “that they’re waiting to see whether you’re some new agent for the enemy (a mercenary practitioner, an erudite killer-for-hire); or whether – by what miracle – you just might be the type who’ll put up some resistance.” Palliative care puts up resistance to the dominant narrative of modern medicine. That narrative promises miracles but often delivers only a series of half-way technologies. [4] That leaves many children in what palliative care pioneer Barbara Sourkes called “the living-dying interval.”[5] She notes, “In the past, the illness trajectory moved directly from diagnosis to death, with little intervening time or space. This “new” middle phase can unfold in many guises: a cycle of remissions and relapses, a gradual downhill course, or prolonged remission implying a cure…The challenge which faces the patient and family is to maintain a semblance of normal life in the “abnormal” presence of life-threatening illness.”
This issue of the journal CPPAH shows how PPC has come of age around the world with articles from Mexico and Argentina, Pakistan and Japan, Holland, Australia, the US and Canada. These thinkers suggest directions for the future in both the development of the field and in the research necessary to improve the ways that we care for children with life-limiting illness.
[1] Lantos J. Do We Still Need Doctors. Routledge. New York. 1996.
[2] Lantos J. Dying Children and the Kindness of Strangers. Chapter 4, in Youngner and Arnold (Eds). The Oxford Handbood of Ethics at the End of Life. Oxford U Press, Oxford, NY. 2016.
[3] Winkler M. The Case of Dr. Sacks. Seven Stories Press, 2000. P 433.
[4] Lantos JD. Not Practicing What We Preach. JAMA Pediatr. 2013;167(10):899–900. doi:10.1001/jamapediatrics.2013.2495
[5] Sourkes B. Armfuls of Time. University of Pittsburgh Press, Pittsburgh, PA. 1982.