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Pediatric Palliative Care in the Context of Humanitarian Crises 

Pediatric Palliative Care in the Context of Humanitarian Crises
Chapter:
Pediatric Palliative Care in the Context of Humanitarian Crises
Author(s):

Elisha Waldman

and Justin N. Baker

DOI:
10.1093/med/9780190066529.003.0012
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date: 09 August 2020

Special Pediatric Needs

Children represent a particularly vulnerable and at-risk population in the context of humanitarian crises, especially when it comes to palliative care needs. While many principles of palliative care and symptom management are fairly similar between adults and children, there are a number of important differences. Some conditions seen in children, in particular genetic and metabolic conditions and congenital anomalies, may not be familiar to and readily identifiable by adult practitioners. Additionally, eliciting reports of symptoms and responses to interventions may be challenging, especially in the case of nonverbal children. Occasionally, due to young age or to disease or injury, a child may be unable to speak for him- or herself. In these situations children are at particular risk for symptoms to be underreported and underappreciated and therefore inadequately addressed. Fortunately, medications used are largely the same for adults and children, albeit with some differences in approaches to dosing (as noted later in the chapter and in Chapter 13).

Managing the needs of children presents a unique psychosocial challenge given their place within a family unit and the possibility that the family unit may be absent or damaged. In communicating with children, such as providing anticipatory guidance or assessing goals of care and discussing plans, we typically rely on communication with parents and the larger family structure, especially when children are too young to speak for themselves. In the context of humanitarian crises, the normal family structure may be disrupted (e.g., parent missing or dead) or altogether absent, requiring that special attention be paid to communicating directly with the child.

Children are also at increased risk for psychological and emotional trauma as a result of a crisis; for children who may live for some time (even years) with chronic illness, this sort of trauma increases the risk of long-term morbidity and mortality. Incorporating multidisciplinary support, whenever possible, from psychosocial clinicians such as social workers, psychologists, and chaplains and from other support services such as teachers, art therapists, or child life specialists is critical.

Communication

As noted, primary communication is often with family and guardians and not with children themselves. Whenever possible, children should be directly addressed in an age-appropriate manner. In delivering difficult news, the rule of thumb is generally to “follow the child” and let them tell you what they want to know. Use of play and art can be very helpful when communicating with children. Trusting relationships are also critical to communicating with children, so utilization of clinicians and providers with any prior knowledge of the patient, if available, can be very helpful.

General Approaches to Communicating with Children

  • Involve parents and family members whenever possible (infants and younger children may prefer to remain in a family member’s arms).

  • Remember that children may have been exposed to serious emotional and/or physical trauma. They may now be separated from parents and family, which may heighten a sense of vulnerability. Do your best to remain calm and speak to them in an age-appropriate manner.

  • In communicating with children of all ages, be aware of your tone, posture, gestures, and facial expressions. Position yourself at the level of the child so you are speaking eye to eye (not looming over them).

  • Communication (and ability to conceptualize death) varies by developmental stage and age. None of these categories are fixed, and, of course, some children may be more advanced than others.

  • In general, ask open-ended questions and allow the child and family member, if present, to lead you where they want to go.

General Guidelines for Preferred Communication Styles and Concepts of Death

Infants

  • Nonverbal communication

  • Tone, volume of speech, gestures, and facial expressions are particularly important at this stage.

  • Physical contact such as hugging and rocking may be effective and soothing.

  • No concept of death, but aware of separation, which may be disturbing

Age 2–4 Years

  • Verbal, prefer concrete questions

  • Conceive of death as something reversible (e.g., may still expect deceased family members to return)

Age 4–8 Years

  • Still prefer concrete questions, more ability to respond to open-ended questions

  • Later in age range idea of death as permanent develops

  • Some magical thinking about causes of death (may include assigning blame, e.g., “if I hadn’t done that, this wouldn’t have happened.”)

Age 8–12 Years

  • May be more demanding of answers, more able to start engaging in developed conversations

  • Concept of personal mortality emerges

  • More interest in what happens after death, recognizing its permanence

Age 12 Years and Older

  • Ability to understand abstract ideas (including abstract and philosophical ideas around death)

  • Able to express full range of emotions

Symptom Management

In general, symptoms encountered and their management resemble that seen in adults.

Some conditions, however, may be less familiar to clinicians more accustomed to adult medicine, including genetic and metabolic conditions and congenital anomalies. These conditions may have been previously undiagnosed, and families may be more or less aware of their extent and meaning. In the context of a crisis, the first priority is determining whether there is any possibility of diagnosing and intervening in a condition. For example, is it at all possible to determine the cause of suspected hydrocephalus or cyanotic heart disease, and is there any ability to intervene? In many, if not most, cases the answer to both may be no, thus the best path is to treat symptomatically, even in the absence of a final diagnosis.

Most distressing symptoms in pediatric palliative care can usually be managed in a stepwise fashion:

  • Step 1: Evaluation

  • Step 2: Treat underlying causes

  • Step 3: Integrative and rehabilitative/supportive therapies

  • Step 4: Pharmacological therapy

  • Step 5: Re-evaluation at regular intervals and following interventions

Eliciting symptoms and response to interventions may be challenging, especially in a nonverbal child. Often it is incorrectly assumed that children are not experiencing distressing symptoms if they are quiet and don’t speak up; silence should not be taken as a sign of absence of pain or disturbing symptoms. Children experiencing extreme pain, especially if it is pain elicited by movement, may appear very quiet and still in an attempt to not provoke painful stimuli; this behavior may be misinterpreted as lack of disturbing symptoms. When children have experienced chronic pain, changes in vital signs like tachycardia may not be accurate indicators of pain. In general, it is safest to take context into account and start with an assumption that a child may be experiencing distress and to treat accordingly. Tools such as the Face, Leg, Activity, Cry, Consolability (FLACC) scale may be useful in evaluating younger or nonverbal children (see Chapter 4).

Especially in situations with a dearth of medications, one should always remember to employ nonpharmacological interventions. Many of these are noted in other symptom-specific chapters in this manual, but in general, these include keeping the child comfortable (warm or cool, depending on conditions) and often just providing human contact; infants in particular often respond simply to being held (though it should be noted that older children who have been exposed to trauma may react adversely to touch, so even this should be approached with caution). Additionally, loss of a sense of security can worsen symptomatology. The concept of “whole pain” should be explored and all aspects of potential suffering attended to, as things such as fear or existential distress may be driving worsening symptomatology.

Medications used for symptom management in pediatrics are similar to those used for adults. The one main difference is that in newborns and infants, because of differences in metabolism, starting doses are generally one-third to half the dose one would use in older children and adults. As noted earlier, symptom burden is often underappreciated, so one should treat liberally, starting low and titrating up to effect, when necessary.

The Actively Dying Child

Symptom management in caring for the actively dying child is largely the same as that of the actively dying adult (taking into account appropriate dose adjustments and communicating in a developmentally appropriate way with the child when possible). The major difference is the critical nature of communicating effectively with parents and family members, if present. Families should receive detailed anticipatory guidance as to what is happening and what they might expect to see. Physical contact with their child should be facilitated when possible. See Chapter 9 for more details.

Chronic Illness

Some pediatric conditions encountered by the clinician providing humanitarian aid may actually be pre-existing chronic conditions, such as cancer, congenital anomalies, and neurodegenerative conditions. Children and their families may or may not be aware of the nature of those conditions, depending on their previous access to healthcare. Because of this, clinicians may be faced with providing new information about a chronic illness, which may be especially difficult in the context of a larger surrounding crisis. Complete diagnostic information may not be available, and prognostication may be difficult, but careful communication to the best of one’s ability, to both child and family, is critical. As mentioned earlier, trusting relationships are critical to communicating with children so utilization of clinicians and providers with any prior knowledge of the patient, if available, can be very helpful. Additionally, when considering chronic illness, the question of what longer-term placement and healthcare options might be available must be considered. For example, depending on the crisis, is evacuation to a more developed country a possibility? Placement long term may be a challenging issue, especially if family structure has been disrupted.

Pediatric Medication Dosing

Medications used in pediatric palliative care are largely the same as those used in adult palliative care, with appropriate dose adjustments. In general, when in doubt, pediatric providers recommend going “low and slow,” starting with lower doses, especially when dealing with opioids and benzodiazepines, and up-titrating to effect. See Chapter 13 for specific dosing guidelines, and Chapter 9 for a pediatric-specific management algorithm for dying children.