Philosophy of palliative medicine

A child’s illness profoundly impacts on child and family, particularly when the illness might lead to death. The science of medicine is increasingly able to intervene to cure even serious illness. However, a significant number of children cannot be cured. They have a ‘life-limiting condition’ (LLC), an illness which leads to premature death and/or a prolonged period of chronic illness. If cure is the only solution medicine can offer, doctors will never meet the needs of children living with LLC. Cure is a powerful way to improve the lives of ill children; fortunately, it is not the only way.

Unlike most medical specialties, palliative care is not defined by organ system, aetiology or age group, but by a philosophy of care. That complicates definitions. There have been many attempts to define which medical conditions are included in LLC. The most widely used is the ACT/RCPCH system, which defines four categories of LLC based on the trajectory of the condition. Conditions in the different categories are:

The exact proportions are not clear (see below), but some reports suggest that categories I and IV each account for roughly a third of all LLCs, with II and III together making up the remaining third.

The multidimensional nature of palliative care means that it is informed by research in a wide range of disciplines, from anthropology – for example, Bluebond-Langner’s seminal work on how children see dying – to bioethics, moral philosophy and theology. Over the last fifteen years, it is perhaps in the fields of opioid pharmacology and epidemiology that the impact of scientific research is most obvious to paediatricians.

One of the barriers to good symptom management has traditionally been the belief that morphine should be withheld from children wherever possible, and that codeine was safer because it was weaker. A series of studies of morphine in children has shown that there is no pharmacological basis for a reluctance to prescribe morphine in children. In contrast, recent clinical studies have shown that the metabolism of codeine is dangerously unpredictable. Studies have made it clear that conventional practice in respect of opioids in children perversely recommended an alternative to morphine that was both less effective and more dangerous.

Epidemiology is beginning to shape palliative care. The ACT/RCPCH categories are descriptions of types of condition, rather than a list of diagnoses. They are not precise enough for epidemiological purposes. That has meant that, until recently, it was impossible to develop services for children with LLCs based on evidence. That has recently changed as a result of studies. One assigned an ICD10 code to around 400 of the commonest LLCs presenting to hospice and palliative care teams in the UK. Another used an analysis of prospective ‘hospital episode’ data. The result was that for the first time we now know that 32 in every 10,000 children in England are living with a LLC and that its prevalence has increased by almost a third in the last decade.

Palliative care in children provides a good illustration of the need for clinical practice to be informed by science, even when cure is no longer possible. Pharmacology and epidemiology are fields of research whose findings have begun to transform the way we can care for children with LLCs.

Pain management:

According to the International Association for the Study of Pain, pain is ‘an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.’ It is:

All children, including the extremely preterm, are able to feel pain. Pain in palliative care is usually neither wholly acute nor entirely chronic. It has elements of both, and may be complicated by the existential context of deterioration towards death.