From The Chair
Pediatric Palliative Care Research – Similar, but Different
Palliative care pediatricians and others who care for children with life-limiting conditions know altogether too well that children are not just little adults. Children who receive palliative care services are affected by illnesses that are different in nature and number from those that typically affect adult recipients of palliative and hospice services. Adults involved in the lives of children – be they family, school teachers, civic club leaders, sports coaches or from a family’s faith community – also occupy a different place in these childrens’ lives (and are generally affected quite differently) when compared to adult family and contacts in the world of adult palliative care. While interdisciplinary teams are the norm in both pediatric and adult palliative care – special knowledge of pediatric developmental, psychological, social and spiritual dimensions round out the comprehensive palliative care of pediatric patients. Even symptom management requires unique assessment tools, knowledge of developmental pharmacology and innovative manners of using medications that may never have been studied in the context of children across the age spectrum – let alone those who may be living with chronic and debilitating states, or at the end of their lives.
So it is that research into pediatric palliative care – be it qualitative or quantitative – must attend to unique differences, challenges, and even barriers in its design, conduct and reporting. To date, few randomized control trials exist in the field of pediatric palliative care. The literature is replete with survey data (often limited by low response rates, investigator bias, poor survey tool design or lack of validation), that may be more preliminary than generalizable. Conclusions from some survey data may be limited because, while it demonstrates what caregivers “think” it may not be capable of measuring what caregivers actually “do”. Case reports and series also abound, peppering the palate of care choices with wonderful ideas, yet not capably addressing safety or efficacy.
The fact that children die of often rare and diverse conditions hampers large studies – indeed multi-site collaboration is necessary as evidenced by networks in the UK, Canada and now the US. Such multi-site studies come with their own challenges of cooperation individual site IRB approval, funding, support systems and staff. That social or cultural impediments exist in and among administrative, IRB, research and policy-making personnel (taboos in addressing dying in America – let alone children dying), also likely contributes to logistical and fiscal constraints on pediatric palliative care research. Further, to best study pediatric palliative care effectiveness and impact, family participation is necessary. Amid the end-of-life care phase, or into bereavement, family members may be thought to find such participation overly burdensome. But recent evidence has emerged from the pediatric care world itself that this not the case – something not altogether clear in other research realms in US health care. Evidence from research into parental thinking, factors and values considered in decision-making, and even bereavement demonstrate that altruism often prevails for some families, and that honoring their child can lead them to participate and create lasting legacies for their child in so doing. In some settings, participation in research allows the patient’s or parents’ lived – and often negative – experience of a clinical decline, another hospitalization, an ICU admission, or home-care under a hospice paradigm, to give way to positive aspects of receiving a potentially beneficial drug or procedure, contributing to improved knowledge of what to do for others, or give purpose/meaning/value to their end-of-life experience.
In recently attending the Pediatric Academic Societies in Washington, DC, I saw and heard firsthand how these challenges are being addressed, and overcome, to advance the research agenda for pediatric palliative care. Centers of excellence are developing across North America that can advance the field and generate a growing body of evidence to ground our nascent specialty. Palliative care will always be a practice – an artful application of human wisdom and medical science. But the scientific rigor it incorporates in advancing its evidence base and equipping its clinicians with new and improved tools will benefit patients, and give credibility to the field, many times over.