Practice in Pediatric Intensive Care: Death and Dying

The death of a child is a significant event. Quality end-of life care improves the quality of death for critically ill pediatric patients, the bereavement process for their families, and is an important skill for all working in the PICU. This is the raison d’etre of the “Death and Dying in the PICU” supplement. This internationally authored supplement provides a series of grounded and practical articles written for frontline providers in pediatric intensive care. Seventeen articles are presented in a sequence reflecting the various phases and aspects of care related to those children most likely to die during, or shortly after, their time in the ICU. PICU was established to save the lives of critically ill children. Fortunately, death affects a small—and falling—proportion of critically ill children. Expectations of care in the PICU reflect this success and are further augmented by the availability and use of technology to support children with life-limiting conditions. Death can represent many things: therapeutic failure, respect of possible and reasonable limitations, acceptance and planning for the end of a wearying journey, and the outcome of a proud struggle—with refusal to acquiesce until the point of death. Thus, death in the contemporary PICU is complicated. The goals of antemortem end-of-life care are to improve death and the dying process and to create a foundation for healthy bereavement after the death of the child. End-of-life care can be provided where goals of care are curative and children are receiving invasive ICU treatments, where there are therapeutic limitations, where the main goals are palliative, and where organ donation is intended. Each circumstance is described in the articles of the supplement. The approach to and extent of end-of-life care provided to individual children and families is affected by the type and intensity of medical therapy provided, the willingness of the family, and ICU teams to accept the risk of death in the context of the primary goals of therapy—either palliative or curative (Fig. 1). Importantly, if stakeholders acknowledge and are willing to accept the high risk of death, meaningful and beneficial end-of-life care can be provided within the constraints of the child’s circumstance.Figure 1.: This conceptual diagram describes the potential to provide antemortem end-of-life care to children at high risk of death. End-of-life care varies between children with palliative (upper line) and curative (lower line) goals of care, by intensity of therapy (x-axis) and willingness to acknowledge death (arrows). The gap between the lines represents the opportunity cost of goals of care. The opportunity cost differs at different intensities of therapy and may be further influenced by the willingness of the family and/or healthcare team to acknowledge the possibility of death. Willingness or limited willingness to acknowledge death (dashed arrows) may preclude or limit provision of antemortem end-of-life care. A zone of potential inconsistency (shading) may exist where the provision of intensive and or prolonged ICU therapy may interfere with the stated primary goal of palliation. Time-limited high-intensity treatment (for example of acutely reversible conditions) may be aligned with palliative goals. Intermittent clarification of goals of care can enable better matching of end-of-life care with current needs; however, antemortem end-of-life care can be provided for all patients acknowledged to be at increased risk of death.Few children in the PICU die, and a small number of children need to be treated as if they will die. In the first article, we describe considerations of the possibility of death and discussions with child, family, and healthcare team about the potential for death (1). In the second article, we review family and individual considerations leading up to decisions about goals of therapy and end of life (2). Death continues to occur in the PICU; however, its relative infrequency presents opportunity for erosion of skills and confidence of individual providers and across PICU teams. In the next four articles, we consider common situations where death is the most likely outcome, specifically with planned withdrawal of life-sustaining therapies (3), continuation of active therapy without planned limitation (4), organ donation (5), and compassionate PICU discharge (6). Each of these end-of-life paths is distinct in context and process, and each path strives to achieve the same principled quality end-of-life care for child and family. Each presents opportunities for conflict and for service excellence and illustrates the intensity in which the experiences embedded within can influence the outcomes for those who are left behind. Changes since the “early days” of pediatric critical care are described in a series of experiential articles that summarize the lived experiences of four ICU physicians from four culturally unique settings (7–10). Their personal journeys highlight the evolution of our speciality and the changing circumstances for childhood death over time and within and between cultures. An additional article describes the creation of a guideline for withdrawal of therapy illustrating the merits of local focus and incorporation of local culture to create meaningful guiding documents and to facilitate acceptance and uptake into practice (11). Autopsy provides opportunity to reevaluate the presumption of accurate medical diagnosis in children for whom treatment has not been curative or lifesaving. The value of formal examination after death—in classical and new formats—and the integration of findings into clinical context in clinicopathologic case conferences are described in two articles (12,13). Bereavement after ICU may be impacted by family experiences in ICU. Caring continues and is described in an article about the consequences and management of bereavement (14). Articles describing the impact of providing end-of-life care on healthcare professionals describe and explore workplace stressors in PICU practice, and the strategies for facilitating high-quality end-of-life care practices are reviewed, and processes and approaches to improve healthcare professional resilience are discussed (15). We believe this is an important overarching role of the supplement and a key element to the success of our speciality as a vehicle for excellent care in all phases of critical illness. The last article is about incorporating palliative care within critical care practice, exploring the interrelationships, the complimentary characteristics, and the benefits of separating operational expertise from academic and consultative expertise (16). We believe that the assembled wisdom, musings, and synthesis of available literature by the 39 authors contributing to the supplement are incomplete. This supplement places emphasis on broad principles and diversity of experiences. We did not address the nuances of navigating key discussions and decisions and chose to avoid articulating absolutes. The intent of the supplement is to promote local discourse, internal reflection, and reconsideration about practices at the time of death and during the dying process. There are many opportunities to explore variations in practice, perform local audits and quality reviews, and conduct the more classical research to compliment the vast experiential knowledge that has been drawn upon for the creation of this resource. We hope that this supplement can aid new and experienced clinicians alike to improve the care provided to children at the end of life and their families. This supplement was funded by an unrestricted grant from the Robin DeVerteuil (RDV) Foundation. The RDV Foundation had no role in the decision to solicit the approval for this supplement, for content of any of the published articles, nor the decisions to submit or support publication. We see the 2018 Death and Dying Supplement as one step in the journey of pediatric critical care practice, as we continue to respect both life and death, the memories of those patients treated in the ICU, and those they left behind.

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