The new futility? The rhetoric and role of “suffering” in pediatric decision-making

Abstract

This article argues that while the presence and influence of “futility” as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like “futility,” claims of patient “suffering” have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like “futility,” it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.

Keywords

Clinical ethics decision-making end-of-life issues futility pediatric practice suffering

Introduction

There are few concepts in bioethics that have incited the level of vigorous and vehement debate that “futility” provoked in the 1990s and 2000s. Indeed, authors¹ have even identified the almost myopic focus of bioethics on “futility” in the decade between 1987 and 1996 as the “futility movement,” a movement marked by debate over whether it was possible to confidently identify medical interventions as futile and whether such an identification justified unilateral decision-making by clinicians. While there remains some disagreement about these questions, most bioethicists agree the futility conversation is marked by at least three critical failures. First, because futility has invited a variety of definitions (or “conceptions”), the usage of the concept often confuses rather than clarifies conversations. Instead, many ethicists and policy statements have actually called us to expunge the word from our clinical vocabularies, instead preferring terms such as “treatments of questionable benefit” or “potentially inappropriate treatments.”² Second, claims of futility allow speakers to impose their own values and goals on clinical decision-making. Finally, futility claims, cloaked in the veneer of objectivity, can be wielded inappropriately by clinicians and institutions to sanction unilateral treatment decisions, over and against patient and family wishes. As these problems were uncovered and discussed, the futility debate waned and since the late 1990s has seen relatively little attention in bioethics.

But, is medicine witnessing the rise of a new futility? In this article, I argue that the concept of “suffering” has, in many ways, become the new futility. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like “futility,” claims of patient “suffering” have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like “futility,” it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.

Consider the following case narrative, originating from a pediatric ethics textbook:

Annie is born at full term with good Apgar scores, but weighs only 2350 grams. On physical exam, she is alert but has somewhat low tone. She has abnormal facial features, short sternum and overriding digits. After failure to pass a nasogastric tube, a tracheal-esophageal fistula is diagnosed. Chromosome studies confirm trisomy 18, and an echocardiogram shows a moderate ventricular septal defect and moderate pulmonary valvular dysplasia. The neonatologist and surgeon meet Annie’s parents to discuss treatment options. They explain that trisomy 18 is a lethal condition and that most children die within the first few weeks to months. The team does not recommend surgery, explaining that surgery is not in the child’s best interest and will result in unnecessary suffering for Annie. They offer the services of the neonatal palliative care team and reassure Annie’s parents that…they can provide comfort for Annie by keeping an IV in place for hydration and pain relief.³

In this case, a claim of patient suffering (actually, it may be a claim of future patient suffering) is being used to influence parental decision-making toward withholding or withdrawing life-sustaining treatment. This sort of appeal is not uncommon in medicine. In fact, a preliminary content analysisⁱ revealed that of the 651 occurrences of the term “suffering” in pediatric ethics articles over the past 10 years, 52% were used as a part of a specific medical decision. Claims of patient suffering were three times as likely to support a life-ending decision as a life-extending decision (32% vs 10%). These data suggest that it is not uncommon for clinicians or caregivers to make claims of patient suffering and that these claims are often made. In the context of a specific medical decision. This should prompt a few questions. First, what is meant by “suffering,” and who can accurately claim suffering on behalf of another person? Second, what role should secondhand claims of suffering play in medical decisions? Is there something about suffering that makes it a morally special factor in medical decisions? And finally, how should we respond to secondhand claims of patient suffering, specifically in the pediatric context?

Suffering: what and who?

While suffering is a very familiar word and we might each have a palpable and vibrant sense of what we would mean by invoking the term, the term is rarely explicitly defined. The same content analysis referenced above also found that of the 651 occurrences of the term “suffering,” only 25% (166) provided any specific characterization of what was intended by the term. Within those 166 occurrences, 20% used suffering to refer to mere physical symptoms; 68% referred to negative psychological, emotional, or existential experiences (over and above physical pain); and 12% referred to both physical pain and a negative psychological experience.

While the term “suffering” hasn’t enjoyed robust philosophical attention within medicine, there are some foundational conceptions that deserve mention. Eric Cassell⁴ has offered one of the most prominent conceptions of suffering in medicine, asserting that the term has two necessary and sufficient conditions: first, is that suffering is a subjective, phenomenological experience (there is no suffering unless a specific person experiences it); and second, that the nature of the experience is one of “severe distress associated with events that threaten the intactness of the person” (p. 24). Importantly, under Cassell’s definition, pain (defined here as a negative physical sensation usually localized to a particular part of the body) and suffering are distinct concepts. They are often co-occurring and interrelated (pain can often cause suffering and existential suffering might even sometimes cause physical pain) but at their essence, they cannot be the same thing. Just because you experience physical pain does not necessarily mean you will experience suffering (e.g. a stubbed toe is painful and annoying, perhaps, but usually does not cause an individual to suffer) and the inverse is also true (e.g. the death of a loved one often causes deep grief and existential suffering, but may not also manifest in physical pain).

Critics of Cassell’s definition have claimed that various implications of his definition are problematic, encouraging us to consider other definitions. For example, embedded in his definition are troubling implications of who can suffer (e.g. infants or individuals with profound developmental disabilities might not be able to understand an event as “threatening their intactness” but nonetheless seem to be able to suffer) and what counts as suffering (e.g. suffering that is somehow “redeemed” and ultimately well-integrated into a sense of self, for Cassell, isn’t suffering).^5,6 These are important critiques which I do not have the space to further explore here. However, it is necessary to sketch at least a beginning characterization of the term to proceed with this discussion.

In this article, I will use the term “suffering” to refer to a negative, subjective experience that goes beyond the experience of pain. This definition prioritizes the lived experience of the individual, while not limiting the phenomenon to only those individuals who can create an intact sense of self. Importantly, this definition does not depend on the ability to communicate about one’s suffering (either verbally or non-verbally) for an individual to be able to suffer. However, as we will further explore, this limited epistemic access to another’s suffering makes it a particularly difficult phenomenon to assess or assuage, especially in children. Second, in connecting the concept to negative experiences that go beyond physical pain, it reflects the most popular usage of the bioethics and pediatrics community (of the authors who specifically characterize suffering, 68% included some dimension of negative psychological, emotional, existential, or spiritual effects, compared to 20% who limited the definition to physical symptoms).

If suffering is a subjective experience, is it possible to accurately assess another person’s suffering?ⁱⁱ One of the most challenging tasks in medicine is to make decisions on behalf of someone who is unable to make those decisions for himself or herself, a challenge that essentially characterizes most of pediatric medicine. In adult medicine, when we are concerned about the quality of a patient’s experience, often we can simply ask him or her: Are you suffering? If so, are the benefits of treatment worth your current (and potentially future) suffering? When adult patients are unconscious, we are able to rely on substituted judgment, or previously articulated wishes to determine what might count as suffering, but in the world of pediatrics, many of our patients are simply too young, or too sick, to directly answer that question.

If we take suffering to be a subjective phenomenon, then it simply cannot be fully or validly assessed by another person. However, as we have seen via the literature, this does not stop clinicians, caregivers, parents, and family members from making claims about another’s suffering. When a patient is unable to explicitly verbalize their experience, as are all infants and many ill children, it is conventional for parents and clinicians to objectively assess that patient’s interests, including an assessment of the suffering of that individual. Most often the way suffering is “objectively” assessed is through observing behaviors that are typically associated with pain and distress, for example, air hunger, agitation, crying, certain facial expressions, and sleeplessness. However, as we have seen, these may be signs of suffering (and, in fact, they might even be fairly reliable signs of suffering), but they aren’t necessarily signs of suffering. And the frequency and intensity of these behaviors is not necessarily indicative of the intensity or duration of actual suffering. Furthermore, the absence of these physical symptoms does not necessarily mean an absence of suffering. So, while secondhand observation of these symptoms and behaviors might often indicate that a patient is suffering, we cannot be certain that they always do so.

Indeed, judging the presence or degree of suffering in children is further complicated by the fact that the minds and experiences of children, generally, are under-studied, and even when they are, they are necessarily interpreted through the minds and methods of adult investigators. And despite our attempts at communicating and interpreting signs and signals, we simply cannot know with certainty the quality or content of a child’s experience. Whether we should celebrate or mourn this mystery (or both, for different reasons), it should certainly remind us of our limitations and prompt humility.

The rhetoric of suffering: is suffering a “morally special” concept?

Possible answers to the question “is suffering somehow ‘morally special’?” have been operationalized in various policies and laws. Consider, for example, the Groningen protocol, a set of Dutch guidelines that allows for the termination of life (i.e. active euthanasia) of a newborn that is not terminally ill.⁷ To do so, the protocol outlines several requirements that must be met, including the requirements that “hopeless and unbearable suffering must be present” and “the diagnosis, prognosis and unbearable suffering must be confirmed by at least one independent doctor.” The article outlining this protocol admits that “suffering is a subjective feeling that cannot be measured objectively” (p. 959).⁷ However, despite this statement, the authors go on to assert that,

infants cannot express their feelings through speech, but they do so through different types of crying, movements and reactions to feedings…[thus] experienced caregivers and parents are able to evaluate the degree of suffering in a newborn, as well as the degree of relief afforded by medication or other measures. (p. 959)⁷

The Groningen protocol has incited widespread controversy in the bioethics and pediatrics world, and among the criticisms of the protocol is the concern that potentially inaccurate secondhand assessments of current and future suffering of an ill child are being used to justify intentionally ending that child’s life. In fact, in a 2009 study reporting end-of-life decisions in Dutch neonatal intensive care units (NICUs), in 92% of patients with “poor prognoses,” decisions were made to end the child’s life (either via withholding or withdrawing life-sustaining treatment or by invoking the Groningen protocol) based not on the child’s present suffering but instead on predictions of the child’s future suffering.⁸ Many have argued that this justification is dubious. Among the critics is Alexander Kon who argues against the Groningen protocol based on research demonstrating that the experience of living with disability is vastly misunderstood.⁹ Healthcare providers, parents, and the general public, he establishes, regularly overestimate the burden of living with disabilities and even very close family members are bad at predicting a patient’s future quality of life. Coupled with the observation that we tend to undervalue the lives of people with disabilities, this leads Kon to believe that the Groningen protocol would likely be used to justify the killing of infants whose present and/or future suffering might be real, but bearable.

Where the Dutch guidelines have perhaps given too much weight to speculation about quality of life, the Baby Doe laws, a set of US regulations passed in the 1980s,¹⁰ explicitly reject quality-of-life justifications in decisions to withhold medical care for infants who are disabled. According to the regulations, which came about as a response to two widely publicized cases involving the deaths of newborns with disabilities, all newborns must receive maximal life-prolonging treatment except under narrow specified conditions. The acceptable conditions under which parents and providers might limit life-prolonging treatments include the following: if the infant is chronically and irreversibly comatose; the treatment would merely prolong dying; or the treatment would be virtually futile in terms of the infant’s survival and treatment would be inhumane. Explicitly not included is any consideration of the child’s quality of life or degree of suffering. Clinicians critiqued this law on the grounds that it did not take seriously enough the degree to which suffering and quality of life impact a patient’s best interests.¹¹

These two pieces of contrasting legislation both make special mention of whether and how secondhand judgments of suffering ought to be considered in treatment decisions. Indeed, the literature also suggests that clinicians and bioethicists use suffering as a concept to denote something morally special or exceptionally weighty. However, I will argue here that there is nothing morally special about suffering, per se, such that it should be distinguished from other harms or benefits when making medical decisions.

Typically, when making treatment decisions, a patient, parent, or surrogate decision-maker will weigh and balance the harms and benefits of various options to help decide which treatment option best maximizes the patient’s interests. Decisions about treatment are essentially cost-benefit analyses: What is the likely benefit gained by a treatment and at what cost? The types of considerations that would be included in such a calculation might include things such as chances that the treatment would be successful in curing the underlying disease, chances that the treatment would return a patient to normal functioning, the harms and side-effects of the treatment (pain, nausea, fatigue, sleeplessness, or agitation), the risks of the treatment (chance of death or disability), among many others. Suffering certainly seems like an obvious harm to include on the “cost” side of the analysis. And in some situations, healthcare providers and parents will independently judge the level of suffering of an individual patient as “too costly” to justify the benefits. This sort of reasoning is displayed in the opening quotes for this article. These judgments are either an assessment that no benefit would be worth the level of suffering perceived to be present in the patient or that the benefit is not substantial enough to make the level of suffering “worth it.” The same has been said about futility: the concept is invoked primarily to express a personal belief that a certain medical intervention is “not worth” the benefit. And while sometimes the term suffering is invoked to indicate a constellation of negative physical symptoms, more often the term is invoked with a larger rhetorical purpose but without an explicit definition (or a readily inferred implicit definition). The term “suffering” carries with it a forceful gestalt quality; the experience is greater than the sum of mere physical (or even psychological) symptoms and thus demands our attention and, perhaps, even demands dramatic action. Often that action is the withholding or withdrawing of life-sustaining treatment; in the Netherlands, that action might be the killing of a child with severe disability.

The problem with making claims of patient suffering without any further elucidation of what is meant by the concept is that the term wields great rhetorical power. It is far too easy to be swept up into the mystical gestalt of “suffering” without realizing that what is actually being referred to isn’t nearly as opaque as we thought. Or, perhaps more to the point, the specific concerns involved might actually be able to be mitigated. This rhetorical use might be intentional on behalf of the speaker: the speaker uses the term deliberately to persuade decision-makers to accept a certain treatment option (usually, the option of “comfort care” only). But I suspect more often the rhetorical power is wielded unknowingly by the speaker or writer: suffering is just a convenient term to use when trying to describe what seems like a bad quality of life. But the term obscures the specific experiences that might be contributing to a bad quality of life, experiences that we very well may be able to do something about. The term also obscures the fact that individuals will tolerate and integrate suffering experiences differently; some may despair and others may find resolve to reframe the experience in a positive light. Furthermore, the term obscures the fact that claims of patient suffering might actually be telling us more about the speaker than the patient, in that they might be revealing real suffering in the speaker (in our case, the nurse, the physician, or the parent). By claiming that “this patient is suffering,” a speaker might actually be saying “I wouldn’t want to live this way” or “This quality of life would be suffering for me,” or perhaps even “I’m in distress! I’m suffering!” I want to be clear: these claims are important. It is not that claims of patient suffering have no moral significance; certainly they do! But claims of patient suffering have no special moral significance, over and above that of other harms and benefits. Furthermore, claims of patient suffering may actually be morally important in more than one way; they are certainly important to help guide medical decisions about patients, but they are also important because they manifest the experience of caregivers—in some cases, the suffering of caregivers—and this deserves our attention and warrants a response (see the next section for specific recommendations for ways to respond).

In 1989, John Lantos and colleagues¹² argued in “The Illusion of Futility in Clinical Practice” that the illusion of futility is the mistaken assumption that it is an objective entity. Instead, they argue, “futility must be determined in the light of the subjective views and goals of patients.” The same could be said about suffering. The illusion of suffering is the mistaken belief that it is an easily identifiable, objective entity. Thus, suffering, per se, should not be considered morally special in medical decision-making. If the concept of suffering is to be useful in medical decisions, it must be accompanied by a more explicit and specific definition, and the harms that emerge from that definition (perhaps pain, agitation, fear, loneliness, anxiety, among others) should be weighed alongside all other harms and benefits. Importantly, with an elucidation of specific concerns that are wrapped up in the claim of suffering, we are better able to actually address those concerns. Pain can be addressed with better pain management; agitation can be addressed by better sedatives; and loneliness, fear, and anxiety can be addressed with more parental involvement or caregiver interaction. And being more explicit about what, specifically, is meant by the term will make it harder for decision-makers to, either intentionally or unintentionally, smuggle their own values or quality-of-life judgments into the decision-making calculus.

I want to be clear that I do not necessarily find it problematic for clinicians to report to parents what they observe to be patient suffering. When clinicians are morally troubled by what appears to be a child that is suffering, they should be empowered to communicate these observations to parents; and parents do and should depend on the observational expertise of clinicians to help make decisions about their children. Instead, what can be problematic about these communications is that they are often (a) offered without any further clarity about what, specifically, concerns the clinicians; (b) exaggerated descriptions aimed at prompting a particular decision; and (c) this particular decision is usually a life-ending decision.

Responding to claims of suffering in pediatrics

What ought to be our response to claims of patient suffering in pediatrics? The futility debate prompted a surge of institutional policies and state legislation providing possible procedural solutions to concerns about initiating futile treatment. This, however, is not my solution to the “suffering” problem. In the previous section, I argued that suffering, per se, should carry no more moral weight than any other harms or benefits and that to be the most useful, and avoid possible rhetorical manipulation, the term should, when time permits, always be unpacked and made more specific when invoked to make medical decisions. In this section, I will describe some possible specific meanings of the term “suffering” and offer recommendations for responding to these possible meanings.

My first recommendation is to always follow-up claims of patient suffering with questions that help illuminate the speaker’s meaning: “What do you mean by suffering?” “What, specifically, indicates to you that the child is suffering?” and “What concerns you the most about what the child might be experiencing currently?” By drawing out the speaker’s concrete concerns for the patient, you are better able to address those concerns. If the speaker’s concerns are primarily rooted in negative physical symptoms (e.g. air hunger, pain, and agitation), these symptoms should be taken seriously and addressed by experts, often palliative care or pain specialists. Almost all claims of patient suffering in children include some degree of physical symptoms, and fortunately, we typically have the tools to improve those symptoms. The data suggest that the most common symptom reported to be associated with suffering by parents is breathing difficulty.¹³ In children under the age of 2, breathing difficulty was followed most commonly by feeding difficulties and pain while parents of children older than age 2 more commonly reported fatigue and sleep disturbances as contributors to suffering.¹³

While I would guess that for patients without the ability to directly verbalize their experiences, most often secondhand claims of suffering would usually include, if not be dominated by, physical symptoms, it is possible that this does not fully capture the concern. The speaker might actually be primarily concerned not about specific physical symptoms, but instead the psychological, emotional, or spiritual experiences of the patient; perhaps, there are concerns that the patient is feeling afraid, or lonely, or hopeless.

Despite Cassell’s appeals, ameliorating existential or emotional suffering remains a weakness of medicine. Still, there are ways for medical practitioners to respond to this type of claim of patient suffering. For example, Cassell himself recommends engaging with the sufferer toward the goal of knowledge of him or her as an individual, which involves the uncovering of the individual’s natural facts, values, and esthetics.⁴ Others have suggested the tools of narrative ethics to help sufferers locate, articulate, and then reconstruct an intact personal narrative that incorporates the realities of illness.¹⁴ More clinically-oriented approaches in palliative care identify the resources of psychotherapeutic interventions such as meaning-centered psychotherapy,^15,16 cognitive-behavioral interventions,¹⁷ or hypnotically facilitated therapy.¹⁸ But our response to this type of claim of patient suffering in pediatrics—one that is primarily psychological or spiritual in nature—is complicated by the fact that these are often children who cannot directly communicate about their experiences. For an older child, and certainly for most conscious adults, these tools can be powerful. However, for an infant or a child with severe intellectual disabilities, these tools are not nearly as potent. Again, I want to emphasize here a posture of humility about what our youngest or most disabled patients might be experiencing. While we may not personally believe a 25-week-old neonate can feel fear or hopelessness, we must act as if they can (see note ii. for more discussion of this claim).

How ought we to respond to secondhand claims that a child is experiencing existential suffering? Perhaps, the most powerful response is also the simplest: we respond to suffering by being present with the sufferer. Drawing on Christian theological resources, Stanley Hauerwas¹⁹ calls this “suffering presence,” a concept he develops in Suffering Presence: Theological Reflections on Medicine, the Mentally Handicapped, and the Church. Here, Hauerwas urges us not to fall prey to the desire to prevent all suffering; to do so would be mistaken. As deeply and necessarily interdependent creatures, existential suffering calls us not only to rage against the suffering itself but instead to draw close to the sufferer. He uses society’s response to the developmentally disabled population as a test case: “Quite simply, the challenge of learning to know, to be with, and care for the retarded is nothing less than learning to know, be with and love God” (p. 178).¹⁹ His reflections on how we understand the experience of someone that is developmentally disabled could equally apply to the experience of an ill child, who often cannot communicate as we do. He says by attributing our own suffering to them, we lack imagination and in trying to avoid the boundaries of our compassion (and perhaps our own suffering), we avoid their presence.

So, we respond to claims of existential suffering of children first, by ourselves drawing near to those children. We spend more time with them, not less. When they tolerate and respond to our touch or embrace, we touch and embrace. When our touch only seems to agitate them (which sometimes it does), we sit nearby and speak to them or sing for them. Second, we encourage parents to do the same. Parents are often deeply troubled by their powerlessness to prevent or remove their children’s suffering so providing them with opportunities for active caregiving reaffirms their role as parent and alleviates their own distress.

Once a claim of patient suffering has been unpacked and the patient’s experience addressed, we must turn our attention to the possible suffering of caregivers: parents, nurses, physicians, and others. While an aspect of my argument is that broad secondhand claims of patient suffering can be rhetorically manipulative, I want to be clear that I rarely believe this to be the explicit intent of the speaker. Instead, I think speakers (parents, providers, and caregivers) are observing something that disturbs them, something that they expect would be a cause of great suffering for themselves, and the mere fact of bearing witness to that can actually cause their own (distinct) suffering. Study after study has demonstrated that the experience of caring for very ill children causes significant distress and often suffering in parents and caregivers, especially bedside nurses who are often the primary witnesses of patient’s day-to-day experiences.^20

–24 Furthermore, the caregiver subjects of qualitative studies on perceptions of child suffering often spontaneously described their own suffering. Take the following quote as an example of parent suffering:

And we, we suffer now. We’ve become a different family and we are with our backs against the wall. There is no medicine, no surgery to cure her. You live day by day. But mainly its mental suffering. Your family is now disrupted, they sleep at different places and times and sometimes you’re not always there mentally. ²²

The research is clear: observing a child suffering often causes suffering in the observer. The root of parental dis-ease or suffering might be the parent’s inability to protect their child or the disruption of their parental role or the unrelenting empathic work of watching your child in pain. The root of provider dis-ease or suffering might be their inability to cure or fix the child’s underlying illness. Thus, while we may not know for sure whether a particular child is suffering (because they cannot tell us), we do know that often someone is suffering in these situations; caregivers are regularly suffering and we must take that suffering seriously.

Fortunately, by first addressing the experience of the patient, we will actually alleviate some (if not most) of the suffering experienced by parents, providers, or caregivers. If a source of parental suffering is watching their child writhe in pain, easing the child’s pain with better palliative pharmacology will most likely also ease some of the parental suffering. However, because the suffering of parents, providers, and other caregivers is (and must always be) distinct from the suffering of the patient, it must also be taken seriously and addressed directly. Here, ethicists and clinicians can draw on the theological, narrative, and psychological resources mentioned above. However, among the more powerful and perhaps simplest mechanisms for responding to this type of suffering is just to acknowledge it and give it space to be expressed. For parents, this might include things such as referrals to pastoral care, counseling or psychology programs, or parent support groups. For clinicians, conversation-based approaches such as multidisciplinary rounds, ethics rounds, or Schwartz Center rounds (fora in which complex and/or morally distressing cases are discussed and concerns are aired by various involved parties, sometimes at the bedside)^25

–28 or peer support groups such as Caring for the Caregiver²⁹ might be the most powerful response.

Finally, once secondhand claims of patient suffering have been unpacked and made more specific, and the discrete concerns have been addressed in targeted ways (see Figure 1 for a summary of recommended responses), only then should the remaining experiences be translated into harms and benefits for the purposes of making a medical decision. The typical process of shared decision-making between parent, provider (and patient, when possible) would, at this point, be better informed. I also want to be clear that even after the specific concerns are explicated and addressed, there may still remain an informed—albeit fallible—secondhand concern that the patient’s “suffering” is too significant to be outweighed by the benefits offered by treatment. How should this claim be interpreted in the context of decision-making? Ultimately, judgments of what constitute “unbearable suffering” or “suffering that isn’t worth the benefit” are value judgments. While clinicians and parents alike will have their own perspective on these judgments, the medical decisions that emanate from these judgments belong to parents and families, not clinicians and hospitals.

Figure 1.

Recommendations for responding to claims of patient suffering.

At this point, I will take the opportunity to further clarify my position on two points that may be nagging the reader. First, I’ll address what might appear to be an inconsistency in my reasoning. I assert in previous sections that while we ought to assume all (or most) children can suffer, our objective access to the nature or intensity of that suffering is extremely limited; thus, why should we take seriously any secondhand claims of patient suffering? If we are prone to inaccurately assess each other’s experiences of suffering, and even sometimes use our perceptions of others’ experiences as opportunities to assert our own quality-of-life judgments, what justifies a response to secondhand claims of patient suffering?

First, these are patients who are unable to speak directly for themselves. If we care about their experience at all, we must rely on secondhand interpretations of that experience. We should always first look for ways to hear directly from the patient; we should get creative with our communication methods (e.g. using play therapy or art with young children). But there will always be cases, in pediatrics especially, where the patient cannot communicate their experience directly with us. Parents and providers are well-positioned to be the next best (albeit, a distant next best) interpreter of the child’s experience. Second, while I am asserting that these claims always deserve a serious response, they don’t always deserve the dramatic and often unjustified response of withholding or withdrawing life-sustaining treatment (or in certain countries, active euthanasia). Indeed, this is the essence of my whole thesis: that by unpacking claims of patient suffering, we will discover far fewer cases where life-ending decisions are justified. Finally, as I hope I’ve clearly conveyed, whether or not these claims say anything about the experience of the child, they absolutely convey something important about the experience of the speaker, something that often requires a response.

The second concern of readers may be that by encouraging specificity and clarity about the concept of suffering, I am engaging in an inappropriate reduction of what is, necessarily, a complex, mysterious phenomenon. This is not my intent. Certainly, elements of suffering will always, and perhaps ought always, remain incomprehensible. The phenomenon is deeply connected to rich spiritual and religious understandings of God, divine power, divine will, and the concept of theodicy.³⁰ My intent, instead, is to acknowledge that general claims of the presence of a complex and mysterious phenomenon, such as suffering, in a particular patient do not encourage good decision-making.

Conclusion

In this article, I have exposed the possibility that, like “futility” before it, the concept of “suffering” is being deployed in rhetorically manipulative ways in medical decision-making, often leading to life-ending decisions for ill children. While I believe this manipulative use is rarely intended, I do believe it is common and it is dangerous for the same reasons why appeals to “futility” have been criticized as dangerous. First, using the blanket term “suffering” conceals the fact that speakers may be referring to very different types of specific concerns about the patient’s lived experience. Second, the term “suffering” too easily smuggles in the speaker’s own experiences and values, eclipsing the patient’s actual experiences and values.

However, secondhand claims of patient suffering in pediatrics should be taken seriously and addressed in a targeted way. First, clinicians and bioethicists ought to follow-up all secondhand claims of patient suffering with questions aimed at uncovering the speaker’s specific concerns. These concerns, whether physical, existential/emotional, or both, should be addressed with specific solutions aimed at improving the child’s experience. Second, clinicians and bioethicists ought to recognize that claims of patient suffering might be distress signals indicating that the parent, provider, or caregiver, themselves, is suffering. This residual caregiver suffering ought to be addressed in a targeted way, as well, through avenues that allow individuals to express and discuss their experience. Only once we’ve made a serious effort at addressing the specific concerns underlying a claim of patient suffering can we allow the resulting harms and benefits affect a decision to withhold or withdraw life-sustaining treatment. From what we can tell, children can and do suffer and claims of patient suffering should be taken seriously. However, we cannot take claims of patient suffering at face-value, lest they obscure the actual experiences of the patient and the actual concerns of the patient’s caregivers.

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Erica K Salter

Notes

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