Physician decision-making process about withholding/withdrawing life-sustaining treatments in paediatric patients: a systematic review of qualitative evidence

Abstract

Background With paediatric patients, deciding whether to withhold/withdraw life-sustaining treatments (LST) at the end of life is difficult and ethically sensitive. Little is understood about how and why physicians decide on withholding/withdrawing LST at the end of life in paediatric patients. In this study, we aimed to synthesise results from the literature on physicians’ perceptions about decision-making when dealing with withholding/withdrawing life-sustaining treatments in paediatric patients. Methods We conducted a systematic review of empirical qualitative studies. Five electronic databases (Pubmed, Cinahl®, Embase®, Scopus®, Web of Science™) were exhaustively searched in order to identify articles published in English from inception through March 17, 2021. Analysis and synthesis were guided by the Qualitative Analysis Guide of Leuven. Results Thirty publications met our criteria and were included for analysis. Overall, we found that physicians agreed to involve parents, and to a lesser extent, children in the decision-making process about withholding/withdrawing LST. Our analysis to identify conceptual schemes revealed that physicians divided their decision-making into three stages: (1) early preparation via advance care planning, (2) information giving and receiving, and (3) arriving at the final decision. Physicians considered advocating for the best interests of the child and of the parents as their major focus. We also identified moderating factors of decision-making, such as facilitators and barriers, specifically those related to physicians and parents that influenced physicians’ decision-making. Conclusions By focusing on stakeholders, structure of the decision-making process, ethical values, and influencing factors, our analysis showed that physicians generally agreed to share the decision-making with parents and the child, especially for adolescents. Further research is required to better understand how to minimise the negative impact of barriers on the decision-making process (e.g., difficult involvement of children, lack of paediatric palliative care expertise, conflict with parents).

Listening to the Residents: The Perception of Pediatric Palliative Care Education in a Residency Program in Brazil

“…7 Three factors make decision-making difficult and delay: hesitation in defining the condition early threatening to life, lack of knowledge of ethical and legal support, and difficulty in dealing with the family's resistance. 8 Within the PC's performance, sensitive topics such as sedation or palliative extubation, for example, generate conflict and suffering for the team. 9,10 Recognizing that PC is based on ethics, science and individual values strengthens the professional.…”

Withdrawal of Life-Sustaining Treatment for Pediatric Patients With Severe Traumatic Brain Injury

“…In the intensive care unit, most pediatric deaths result from decisions related to withdrawal of life-sustaining treatment . The decision to withdraw life-sustaining treatment is complex with several contributing factors, such as the severity of neurological injury, clinical course, and family wishes . Withdrawal of continued treatment must balance the potential benefits of delayed neurological recovery with the harms of excess suffering in the face of medical futility.…”

“…[6][7][8][9] The decision to withdraw lifesustaining treatment is complex with several contributing factors, such as the severity of neurological injury, clinical course, and family wishes. 10,11 Withdrawal of continued treatment must balance the potential benefits of delayed neurological recovery with the harms of excess suffering in the face of medical futility. Factors associated with withdrawal of lifesustaining treatment practices in pediatric patients with severe TBI remain poorly characterized; understanding the clinical, demographic, and center-level variables associated with withdrawal of life-sustaining treatment practices is a priority for promoting equitable pediatric trauma and critical care provision while providing benchmarking data to avoid propagation of clinical nihilism.…”

Navigating tensions when life‐sustaining treatment is withdrawn: A thematic synthesis of nurses' and physicians' experiences

“…Although the implementations of treatment futility and patient's wishes were diverse in practice by context, the withdrawal of life-sustaining treatment fundamentally shared the principles of treatment futility and patient's wishes. Therefore, studies have been conducted to synthesise qualitative experiences related to the withdrawal of life-sustaining treatment process in intensive care units (Heradstveit et al, 2023;Meeker & Jezewski, 2009;Vanderspank-Wright et al, 2018;Zhong et al, 2022). However, those studies focused on different populations, such as paediatric patients and family member or the topic of nurses' roles in withdrawing life-sustaining treatment (Heradstveit et al, 2023;Meeker & Jezewski, 2009;Zhong et al, 2022).…”

“…Therefore, studies have been conducted to synthesise qualitative experiences related to the withdrawal of life-sustaining treatment process in intensive care units (Heradstveit et al, 2023;Meeker & Jezewski, 2009;Vanderspank-Wright et al, 2018;Zhong et al, 2022). However, those studies focused on different populations, such as paediatric patients and family member or the topic of nurses' roles in withdrawing life-sustaining treatment (Heradstveit et al, 2023;Meeker & Jezewski, 2009;Zhong et al, 2022). Additionally, the studies that synthesised evidence about nurses' roles in the withdrawing life-sustaining treatment included nurses' experiences only, which lacked physicians' perspectives on nurses' roles (Heradstveit et al, 2023;Vanderspank-Wright et al, 2018).…”