The Suffering Child: Claims of Suffering in Seminal Cases and What To Do About Them

In August of 2016, Charlie Gard was born at term in the United Kingdom. Shortly after birth, his parents began to notice muscle weakness and breathing difficulties. He was admitted to intensive care and was eventually diagnosed with a severe mitochondrial disorder. Charlie’s specific disorder had been previously reported in ∼15 infants, with typical clinical features including early onset, rapid progression, and death in infancy.¹  Charlie’s parents identified an experimental treatment that they hoped might benefit Charlie, but, given his deteriorating condition, Charlie’s physicians and care team thought this treatment would not be beneficial. They applied to the Family Division of the High Court for permission to withdraw life support and to provide palliative care. A lengthy court battle ensued between the hospital and Charlie’s parents, and several major media outlets around the world covered the story. Perhaps not surprisingly, both Charlie’s parents and his care team appealed to the claim that Charlie was suffering to support their conflicting positions.

Charlie’s parents acknowledged his current suffering by saying in a statement to the court, “We would not fight for the quality of life he has now.”²  They believed that a life spent hooked up to a ventilator, unable to interact with his environment, was causing Charlie to suffer. However, unlike the care team, they thought the experimental therapy, not the removal of ventilator support, would improve Charlie’s quality of life and would thus be the best way to alleviate his suffering.

The hospital where Charlie was receiving treatment provided a more opaque conceptualization of suffering. A statement issued by the hospital read, in part, the following:

What does the hospital mean by “suffering” in this context? Like the parents, do they believe that Charlie’s current quality of life (continued existence supported by life-sustaining interventions) is causing him suffering? Are they referring to the physical pain that prolonged treatment could be causing Charlie? Are they referring to the emotional distress of Charlie’s parents, who are distraught over their son’s illness? Or perhaps they are referring to the existential suffering of everyone involved caused by the protracted court battle and media attention.

Ultimately, by drawing on yet another conceptualization of suffering, the court ruled in favor of the hospital in deciding to terminate Charlie’s ventilator support. The presiding judge concluded the following:

In this case, Charlie’s suffering was ultimately used as the reason to terminate life support. By reflecting on Charlie’s lived experience, the judge concluded that continued life-sustaining interventions were not in Charlie’s best interests. However, here we can see the dangers of using quality of life as an indication of suffering: who gets to decide what “quality” looks like, and at what threshold do we decide that a certain quality of life leads to suffering and it is not in the child’s best interests to continue life-sustaining interventions?

A similar case emerged in the United Kingdom just a few months after Charlie’s death in July of 2017. In 2016, at 6 months of age, Alfie Evans was diagnosed with a rare neurodegenerative disorder. In December of 2017, after a prolonged hospital stay with no marked improvement, the hospital in Liverpool, England, where Alfie was receiving treatment applied to the High Court to have Alfie’s ventilator support removed. Once again, claims of suffering were invoked both to support the decision to withdraw ventilator support and continue providing treatment.

On one side, Alfie’s physicians and care team believed that Alfie was suffering, continued treatment would only prolong his suffering, and treatment should thus be stopped. In a statement to the court, one physician said:

On the other side, Pope Francis offered a different perspective on the suffering present in the case. Because there was a possibility that Alfie could receive treatment in Italy, Pope Francis commented the following, in a tweet: “Moved by the prayers and immense solidarity shown little Alfie Evans, I renew my appeal that the suffering of his parents may be heard and that their desire to seek new forms of treatment may be granted.”⁵ 

Here, we have two different uses of the word “suffering.” The court refers to the potential suffering caused by continued treatment and appeals to the need to relieve this suffering by withdrawing intensive care support. Pope Francis, however, uses the concept of suffering in a different way, referring to the suffering of Alfie’s parents. In contrast to the court ruling, which cites suffering as a reason to stop treatment, Pope Francis claims that suffering (of Alfie’s parents) should actually be a reason to seek treatment. What do we do with these competing claims of suffering? Which use of suffering is right, and how should claims of suffering impact treatment decisions for children who cannot communicate their own wishes or experience of suffering?

These types of cases do not just plague the United Kingdom. In January of 2010, Joseph Maraachli was born in Ontario, Canada. Baby Joseph (as he was known in the media) initially developed normally, but, at 3 months of age, his parents started to notice some behavioral abnormalities. He was hospitalized several times for breathing difficulties and was ultimately diagnosed with Leigh syndrome, a rare neurometabolic disorder that causes degeneration of the central nervous system.⁶  At the hospital in London, Ontario, where Baby Joseph was receiving treatment, doctors diagnosed him to be in a persistent vegetative state and refused to perform a tracheostomy, which the family was requesting so that Baby Joseph could live the remainder of his life at home.

Pediatrician Dr Melanie Brown from the University of Chicago Medicine Comer Children’s Hospital described the case of Baby Joseph in this way: “It pulls at all our heartstrings when we see a baby who might be suffering. There may be times where there are things we do so a child can live out the type of life that a family wants for them.”⁶  Again, the meaning of the term “suffering” is ambiguous here. Is Baby Joseph suffering from continued life? Is he in pain? Or is he perhaps suffering because he is unable to be with his family at home?

Yet the medical team, in refusing to perform a tracheostomy, also aims to avoid suffering, especially suffering they see as purposeless. Although most surgical procedures cause some pain and discomfort and perhaps even suffering, we do them to serve a greater purpose, such as treating a disease or improving quality of life. But because Baby Joseph’s condition was terminal, the medical team did not want to cause what they saw as needless suffering with another surgical intervention. How should we interpret these appeals to suffering and their conflicting treatment recommendations, and, ultimately, which appeal should rule the day?

Although I, through these cases, highlight just 3 examples of the conflicting ways in which the term “suffering” is used, these cases are indicative of a larger issue. In a qualitative content analysis of pediatric bioethics and clinical literature, Friedrich et al⁷  found that although the term “suffering” is often used ambiguously and rarely defined, it still plays a major role in pediatric decision-making. Of the 651 occurrences of the term “suffering” in pediatric bioethics and clinical articles over the past 10 years, over 70% were ambiguous or not clearly defined. Despite this ambiguity, 52% of the occurrences were used as a part of a specific medical decision, and claims of patient suffering were 3 times more likely to be invoked to support a life-ending decision than to support a life-extending decision.⁷  In colloquial use, “suffering” may appear to have a clear or objective meaning, but, as evidenced by the competing claims of suffering in the cases of Charlie Gard, Alfie Evans, and Baby Joseph, these claims can be used to sneak in value judgments about quality of life, which can often lead to conflicting treatment decisions or life-ending treatment decisions.⁸  Veiled under the nebulous claim of alleviating suffering, clinicians are making judgments about what type of life is not worth living. These judgments can lead to extreme conclusions, demonstrated most powerfully by use of the Groningen Protocol.

Although claims of patient suffering are often only informally drawn on to impact treatment decisions for children, suffering in the decision-making process is given a special place in the Groningen Protocol, a set of Dutch guidelines allowing physicians to actively terminate the life of a newborn that is not terminally ill; among the protocol’s requirements is the presence of “hopeless and unbearable suffering” in the child, along with confirmation of that suffering by ≥2 physicians.⁹  This protocol has been widely criticized as giving too much weight to secondhand assessments of current and future patient suffering, assessments that are inherently speculation about the first-hand experience of the newborn.¹⁰  And although these guidelines have not been implemented in other countries, this protocol is used as an explicit example of what is perhaps already happening in some pediatric practices: quality of life judgments and treatment withdrawal decisions under the guise of avoiding or alleviating suffering, although we are not always clear on what we mean when invoking that concept.

Given the ambiguity of the term and the resulting conflicting treatment recommendations, how ought we respond to claims of suffering in pediatric medicine? Perhaps, instead of trying to further clarify or concretize the concept of suffering, we ought to embrace the inherent ambiguity of the term. As Wilfond¹¹  reminds us, suffering is a “social construction”: we all use this term to mean different things. Suffering, quality of life, and family burden are all terms that clinicians may use to express their belief that a child’s life is not worth living, whereas parents or popes may see suffering as an opportunity to intervene, offer further treatment, or simply draw near to the child. The cases of Charlie Gard, Alfie Evans, and Baby Joseph have become seminal cases precisely because there is no clear resolution, and the “suffering child” will continue to challenge our moral ideals of what it means to live a good life.

There are certainly practical steps that can be taken to alleviate concerns about a child’s suffering, such as clarifying what parents or providers mean when they use the term “suffering” and addressing those specific concerns.⁸  Yet perhaps the best way to respond to these claims is simply to acknowledge the inherent ambiguity, bear witness to and be with those who are suffering, and proceed forward one step at a time, together with parents, providers, and all those who care for the child, toward a decision.