Work of a paediatric bioethics centre during the COVID-19 pandemic first phase

Abstract

ObjectivesDecisions with an ethical component have been controversial during the COVID-19 pandemic, whether leaked intensive care unit (ICU)-rationing documents, transfer of people to care-homes to ‘protect the National Health Service’ or the duty to treat patients despite inadequate personal protective equipment. To counter criticism of ethics per se, and to help those planning ethics support we describe the practical work of a children’s hospital bioethics team in supporting children, families and clinicians during this unprecedented period.Design/settingThree phases of activity: (i) preparation: we composed several documents to support/guide hospital teams and, together with colleagues, provided them to regional inpatient, community and hospice settings. We adapted existing mechanisms to combat workforce moral injury; (ii) activity (March–June 2020): was highest in our rapid response service where children/families consider difficult treatment decisions with medical teams. Education provided ‘pandemic webcasts’ on decision-making and broader child-health concerns. Staff support was essential, especially for those deployed to overwhelmed local adult ICUs. Research ascertained young people’s views on the pandemic; (iii) reflection: focussed on (a) research about future re-deployment to adult services and minimisation of moral distress/injury, (b) remote video-conferencing—parents’/participants’ experience/ability to consider complex ethical issues and (c) role of faith/non-faith in society’s recovery and children’s views.Main outcome/conclusionsOur bioethics team’s role during the pandemic included: case reviews via video-conferencing, many involving innovative therapy for severely unwell children with COVID-19/Paediatric-Inflammatory-Multisystem Syndrome-Temporally associated with SARS-CoV-2 together with their parents; processes to protect healthcare staff from moral harm and research/educational activity focused on paediatric-specific ethical arising during the pandemic.

Clinical ethics support services during the COVID-19 pandemic in the UK: a cross-sectional survey

“… 37 Assessing the implications of patient and families’ involvement requires normative and empirical analysis, 39 which is currently limited. 40 Reports of benefits from both clinicians 41 and patients/parents 3 focus on the better understanding of patients’ perspective and promotion of their autonomy in decision making 37 as a component of patient-centred care. 42 However, there are also concerns that patient involvement could lead to misuse of CESSs as a complaints forum as well as fears that patient involvement could limit the openness of discussions and complicate decision making and consensus achievement.…”

“…2 Healthcare institutions and clinicians have also faced an increased and much broader array of ethical challenges, such as personal safety, reallocation of clinicians, resource allocation and triage, and the closing down or limitation of non-COVID-19 related services. [3][4][5] These changes and the great uncertainties posed by the pandemic increased the risk of healthcare providers experiencing moral distress, 6 7 defined by the British Medical Association as 'the psychological unease generated where professionals identify an ethically correct action to take but are constrained in their ability to take that action' (p. 3). 8 A recent systematic review suggests overall positive user satisfaction with the impact of CESSs prior to the pandemic, notwithstanding a paucity of research on their effectiveness.…”

“…In response to the increased and unprecedent demand for clinical ethics support during the pandemic, established CESSs have adapted their services, 3 4 and new ethics provision has been set up. 23 Considering a lack of official regulation and requirements, evidence is needed as to how ethics support is being provided across the UK, how established CESSs changed and the different roles these services are having in relevant institutions.…”

COVID‐19, children, clinical trials and compassion: The ethical case for using innovative or compassionate treatments

“…In support of this approach, we reported the use of our ethical framework to provide urgent access to compassionate treatment for children with life‐threatening COVID‐19 infection during the first wave 15 …”

“…In support of this approach, we reported the use of our ethical framework to provide urgent access to compassionate treatment for children with life‐threatening COVID‐19 infection during the first wave. 15 Ethical discussions involving the relevant medical teams and parents took place within hours of referral and considered whether the prerequisites for innovative therapy had been fulfilled, taking account of mandatory external second opinions whilst acknowledging uncertainly. Examples included the antiviral drug remdesivir for a child with new leukaemia, 16 and another with COVID‐induced acute respiratory distress syndrome and multiple organ failure.…”