Human Suffering: The Need for Relationship-Based Research in Pediatric End-of-Life Care

Abstract

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being.

Of the Soul and Suffering: Mindfulness-Based Interventions and Bereavement

“…Further studies should include rigorous designs and methodologies in addition to effective measurement tools (Kane et al 2004). For instance, a measure of grief intensity was lacking in this case study and could be added to future studies to obtain a clearer picture of how this model affects grief.…”

Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss

“…During treatment parents are socialized in hope and curative goals [17]. Within the context of palliation the transition to EoL care requires a transition in thought from 'cure' to 'quality of life' [15,27]. In pediatric oncology this change in perspective is usually seen from a decision perspective [6,8].…”

Pediatric Palliative Care Moving Forward: Empathy, Competence, Quality, and the Need for Systematic Change

“…6 One can hardly think of a better way to address these needs and endorse quality through emphasis on processes and outcomes than interventions directed to improve the level of competence in palliative care among health care providers and promote empathy towards the individuals they serve. 7 The investment of resources on our caregivers naturally leads to emphasis on education and research. Caregivers from a wide variety of disciplines must be educated to deliver patient-centered care as members of an interdisciplinary team, emphasizing evidence-based practice and quality improvement approaches.…”