Peanut butter and jelly, needle and thread, salt and pepper, pen and paper, night and day, cream and sugar. Everyone knows that each of these things go together like peas and carrots. But what about trying to find a match for the word “children”?
Children and… Energy? Excitement? Curiosity? Out of all the ways we might match children with an attribute, ability, or milestone, we would hardly match “children” with the condition of “death.” To put a child and death in the same sentence is dissonant, like nails on a chalkboard or steak topped with sickly-sweet chocolate sauce. Childhood-and-death just doesn’t make sense in our modern western categories of life. We live in an unusually bright time in history when childhood mortality is rarely seen or heard.
Pain in Children
Yet our distance from the experience of infant and child mortality has put medical science at a unique and notable disadvantage. Since childhood death is perceived as unusual, managing pain and other end-of-life symptoms and treatment in young people has gone comparatively understudied next to other medical disciplines. Yet, infants and children still suffer sickness unto death and it is incumbent upon loved ones, caretakers, medical teams, and science to help young people manage pain and suffering at the end of life with compassion and both pre-emptive and responsive treatment options. It was once believed that children did not experience pain at all.
The 20th century was a landmark time in history when the experience of infants and children was finally recognized. In 1987 the New York Times ran an expose titled Infants’ Sense of Pain is Recognized, Finally pointing out that even up until the mid-1980’s medical scientists and physicians had operated out of the norm that infants and children did not experience pain – at least not on the order of magnitude as an adult. As recent as 2015, Oxford University scanned infants and children’s brains in MRI studies and discovered without doubt that pain is experienced similarly among all humans of any age.
Assessing End of Life Pain in Infants and Pre- or Non-Communicative Children
Infants and children experience physical pain just as any other human being, yet they often express their experience of pain differently than adolescents and adults. For example, infants and toddlers have not developed the ability to verbally communicate with precision, so it is difficult to ask, “where does it hurt?” and expect to receive a clear answer. Therefore, to understand pain in little ones for the sake of response, it is important to look for other physical and visual clues such as visible wounds, grabbing at a particular physical location, crying and other expressions of irritability, self-restriction of movement, and/or withdrawal from engaging in the environment.
Those cues can help a medical care team diagnose and treat pain both with appropriate medication and other therapeutic options. After providing treatment in response to pain, loved ones and care teams may observe that the young child becomes more interactive, alert, playful, and engage in freer movement due to increased comfort.
Assessing End-of-life Pain in Verbally Communicative Children
Older children certainly have the ability to speak to where they experience pain (for example, “it hurts [here]” or “I’m still feeling sick and the medicine hasn’t helped like you said it would.”). However, pain in children, while experienced on the same physical magnitude as adults, is often complicated by a different set of interests and priorities. Even at the end of life, children want to feel safe, know that the adults managing their care are responsive and trustworthy, and still engage the world around them with some measure of energy and enjoyment. Because of this, “pain management” should also include negotiating symptoms of fatigue, reduced appetite, nausea, vomiting, difficulties sleeping, difficulties breathing, and anxiety.
All of these symptoms require equal attention as the physical pain, because they can negatively influence one another. An anxious child will experience more pain, and vice-versa. Most children, even though they might have communication skills, will not necessarily be able to identify that, for example, their hunger is influencing the presence of increased nausea, which is amplifying other sources of physical pain. Caretakers will need to be extra-attentive to the conditions and non-verbal expressions of a suffering child in order to best get at medically managing even clearly indicated, localized pain. Infants and children are both able to receive opioids and other sources of dose-appropriate pain relief medication toward the end of life
Among the best resources in offering dying children attentive end-of-life pain management is hospice care. Hospice care providers fearlessly enter into the space of the dying process and have no qualms about assessing and managing the needs of even children as they approach their last days of life. Care teams frequently include physicians, therapists, nurses, and social workers, and seek to fully include parents and other friends and loved ones in the overall care plan for dying children. Hospice care systems tend to “flatten out” hierarchies of care, meaning that family members and children themselves are respectfully offered a welcomed voice in developing an end of life plan of care.
Both inpatient and at-home hospice care employees are trained to clearly and compassionately identify needs and potential concerns as children approach the end of their lives. Hospice professionals go well beyond questions of “where does it hurt” and often intuitively manage the needs of their patients, even in the current absence of pediatric pain measurement tools and resources.
Supporting Children During End-of-life
The truth of the matter is that infants and children approaching the end of life will suffer pain. No one wants to consider this as even possible in the world, as “children” should be fitted into the same sentence as goodness and life, not pain and death. Yet, it is a reality that some face. In order to offer dying young people the best opportunities for reduced pain and access to fulfilling experiences and relationships in their last days, attentive team care is their best option.