Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies

Abstract

As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, or withdrawing therapies in a PICU. Clarifying beliefs and values is a necessary prerequisite to approaching these conversations. Striving for medical consensus is important. Discussion, reflection, and ethical analysis may determine a range of views that may reasonably be respected if professional disagreements persist. Parental decisional support is recommended and should incorporate their information needs, perceptions of medical uncertainty, child's condition, and their role as a parent. Child's involvement in decision making should be considered, but may not be possible. Culturally attuned care requires early examination of cultural perspectives before misunderstandings or disagreements occur. Societal influences may affect expectations and exploration of such may help frame discussions. Hospital readiness for support of social media campaigns is recommended. Consensus with family on goals of care is ideal as it addresses all parties' moral stance and diminishes the risk for superseding one group's value judgments over another. Engaging additional supportive services early can aid with understanding or resolving disagreement. There is wide variation globally in ethical permissibility, cultural, and societal influences that impact the clinician, child, and parents. Thoughtful consideration to these issues when approaching decisions about limitation or withdrawal of life-sustaining therapies will help to reduce emotional, spiritual, and ethical burdens, minimize misunderstanding for all involved, and maximize high-quality care delivery.

Psychological impact of working in paediatric intensive care. A UK-wide prevalence study

“…Recently, some cases have attracted high profile scrutiny in the Courts and on social media. As a result of these factors, the emotional costs of working in PICU are recognised as making it one of the most challenging in healthcare [4].…”

Principlism and Personalism. Comparing Two Ethical Models Applied Clinically in Neonates Undergoing Extracorporeal Membrane Oxygenation Support

“…In many countries, such as Canada, United States, United Kingdom, and others, it is both ethically and legally permissible to forgo or request discontinuation of life-sustaining therapy, even if the intervention is life prolonging or beneficial (4, 5). Otherwise said, they can choose not to act for their own benefit.…”

“…This practice is supported by ethical concepts (e.g., Kan's moral theory, etc.) beyond and in addition to the framework of Principlism, although our discussion will focus only on Principlism within the scope of this article (5).…”

“…Principlism and Personalism utilize different principles to manage complex clinical scenarios and parental input (Figure 4). According to Principlism, the autonomy of the patients is respected in part by involving them or their surrogate (parents) in a shared decision (4, 5, 10, 28, 29, 33) to determine how to intervene for the best interest of the patient. A collaborative process that allows both the family and clinicians to reach a common health care decision has been proposed and endorsed by many international medical and nursing societies (41).…”

“…ECMO can be established: as a bridge to recovery (in case of reversible disease); as a bridge to a bridge (transition to a ventricular assist device), as a bridge to organ transplantation (rare in neonates); or as a bridge to decision (providing time to recovery, time for diagnosis or time to evaluate candidacy for transplantation, or for a longer term mechanical circulatory support) (4). This rapid expansion of clinical indications (5, 6) has outpaced empirical outcome data; challenging bedside clinical decisions as previously contraindicated disease states (immunocompromised patients, recent surgery, or trauma) are now able to be supported with ECMO (7–10). This emphasizes the need to address important questions such as how decisions to offer ECMO are made as well as how and when to discontinue ECMO when unsuccessful (11–14).…”