Publication
The Alluring, Enduring, and Troubling Concept of a "Good Death" in Pediatric Palliative Care
Broden E, McCarthy S, Snaman J · Journal of Pain and Symptom Management · 2024
Outcomes: 1. Using a critical historical approach, participants will evaluate why, how, and for/with who the "good death" concept emerged and how it has persisted over time. 2. The interprofessional authorship team will illustrate and deconstruct the "good death" concept into actionable components that can be used to improve clinical care and research inquiry. Key Message: The concept of a "good death" is compelling in its simplicity. Yet, defining a "good death" for a child offers little utility amidst end-of-life and early bereavement. Moreover, pursuing a "good death" may introduce judgements that perpetuate, rather than mitigate distress among families and clinicians navigating a child's death. Background(s): Given challenges in measuring complicated, individualized end-of-life experiences, a "good death" emerged as a simple and compelling ideal to improve end-of-life care in highly medicalized care settings. However, it offers little utility in the complicated world we step into alongside dying children and their families. Critical examination: Attempting to erase complexity when asking about death only further removes us from the reality of dying. Further, terminology that implies a child's death is potentially "good" when specified criteria are met imbues a value judgement into already delicate end-of-life experiences that can exact lasting harms on the surviving family. Predominant narratives surrounding a "good death", often filtered through clinician and/or researcher lenses, include avoidance of intensive interventions and optimization of comfort, connection, and alignment/agreement between all care partners. These references that imply a "good death" is free of intensive interventions may alienate parents for whom not "doing everything" would violate deeply held personal or religious beliefs. Enduring "good death" narratives can also lead clinicians to struggle with moral distress or injury when a child's end-of-life experience doesn't meet their prescribed notion of a "good death". Implications: Continuing to utilize a "good death" as a metric in clinical care and research may perpetuate harmful assumptions and biases that leave families' needs underserved and clinicians morally distressed, rather than improving end-of-life experiences. Using this vague and reductive approach to characterize a child's death generates little clinical utility: what exactly made the death "good"? Recommendations: Considering the risk-to-benefit ratio, the concept of a "good death" potentiates substantial harm while offering minimal, if any, benefit. We propose breaking down this concept into its actionable elements, e.g., compassionate communication, timely and thorough symptom management, situational awareness, meaning and memory making opportunities; offers a more clinically useful approach. Keywords: Loss, Grief, Bereavement; Existential / Humanities / Spirituality / ReligionCopyright © 2024
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