Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia

Abstract

ObjectivesAdvance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise a difference between the process of ACP and its outcomes, such as resuscitation plans. This study aims to understand how paediatricians conceptualise ACP when caring for children with life-limiting conditions (LLC) who are unable to participate in decision-making for his/herself.DesignIndividual, semistructured, vignette-based qualitative interviews.SettingAcute inpatient and long-term outpatient paediatric care in three secondary and two tertiary centres in Victoria, Australia.Participants25 purposively sampled paediatricians who treat children with LLC, outside the neonatal period. Paediatricians were excluded if they worked within specialist palliative care teams or assisted in this study’s design.ResultsFour key themes were identified when approaching end-of-life decision-making discussions: (1) there is a process over time, (2) there are three elements, (3) the role of exploring parental values and (4) the emotional impact. The three elements of this process are: (1) communicating the child’s risk of death, (2) moving from theoretical concepts to practice and (3) documenting decisions about resuscitation or intensive technologies. However, not all paediatricians recognised all elements as ACP, nor are all elements consistently or intentionally used. Some paediatricians considered ACP to be only documentation of decisions in advance.ConclusionThere is a preparatory process of discussions for end-of-life decision-making, with elements in this preparation practised within therapeutic relationships. Complexity in what constitutes ACP needs to be captured in guidance and training to include intentional exploration of parental values, and recognition and management of the emotional impact of ACP could increase its consistency and value.

Implementing advance care planning in palliative and end of life care: a scoping review of community nursing perspectives

“…Community nurses in this review were reported to avoid initiating ACP conversations in situations of family conflict (i.e., denial) [ 52 , 60 ] or where family dynamics (i.e., differing priorities) complicated the process [ 52 , 54 , 64 ]. Similarly, in paediatrics, parents and/or carers in denial of a child’s palliative condition presented challenges initiating ACP [ 77 ], despite the benefit of ACP preparing families for end-of-life care [ 78 ]. However, from this review, Glaudemans et al [ 53 ] mentioned educating families about ACP benefits and building decision-making confidence (e.g., explaining an Advance Care Plan can be amended to reflect changes in care), as well as the confidence of community nurses can help to ameliorate these issues.…”

Qualitative Study of Paediatric Advance Care Planning Through Simulation: How we did it and the Lessons Learned

“…This is not the same in paediatric ACP since the parents as the decision-makers are not ill and are not going to lose their decision-making capacity. The motivation of paediatric ACP is to prepare parents (Vemuri et al, 2022). However, not all parents find this preparation acceptable (Liberman et al, 2014; Mitchell et al, 2019), and the challenge for paediatricians is to identify how much to engage parents in these discussions.…”

Adapting the Voicing My CHOiCES Advance Care Planning Communication Guide for Australian Adolescents and Young Adults with Cancer: Appropriateness, Acceptability, and Considerations for Clinical Practice

“…Advanced care planning is a process which aims to improve the quality of patients’ end-of-life period by supporting them to make choices consistent with their values and goals of care [ 11 , 12 ]. It empowers families to better understand and honour the individual’s preferences [ 13 ].…”