Differences in perspectives of pediatricians on advance care planning: a cross-sectional survey

Abstract

Background The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients’ self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties. Methods This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018. Results Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%). Conclusions The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.

Advance care plan discussion among parents of children with cerebral palsy

“…Even parents who had not been told that their child’s condition was life‐limiting or who had not had previous ACP discussion found the ACP discussion acceptable. This is reflected in past studies that showed parents look to health‐care providers to initiate ACP discussions, 24,25 hence allaying anxiety and fear among clinicians who are hesitant to initiate ACP discussion so as not to ‘upset’ the family 2,18,19,26 . A high acceptance rate of ACP discussion indirectly implies the parents’ readiness to participate in decision‐making exercises related to their child’s health, which is a key factor for successful ACP implementation 4,8,9,14,22 …”

“…This is reflected in past studies that showed parents look to health-care providers to initiate ACP discussions, 24,25 hence allaying anxiety and fear among clinicians who are hesitant to initiate ACP discussion so as not to 'upset' the family. 2,18,19,26 A high acceptance rate of ACP discussion indirectly implies the parents' readiness to participate in decision-making exercises related to their child's health, which is a key factor for successful ACP implementation. 4,8,9,14,22 Most (89.5%) of the parents in this study felt the timing for ACP discussion was suitable, which is substantiated by recommendations from other studies that support having discussions during clinically stable periods.…”

“…There are only a few publications on ACP in Asian children with life‐limiting conditions. These studies were all conducted in high‐income Asian countries (Hong Kong, Republic of Korea, and Japan) and focused solely on health‐care providers’ attitude towards the ACP process 17–19 . Thus it is not certain if the ethno‐cultural and sociodemographic differences between Western, high‐income Asian, and low‐ and middle‐income Asian countries influence parental perception of ACP discussions.…”

“…These studies were all conducted in high-income Asian countries (Hong Kong, Republic of Korea, and Japan) and focused solely on healthcare providers' attitude towards the ACP process. [17][18][19] Thus it is not certain if the ethno-cultural and sociodemographic differences between Western, high-income Asian, and lowand middle-income Asian countries influence parental perception of ACP discussions. Malaysia is a middle-income country in Southeast Asia with a diverse ethnic and religious community.…”

Paediatric palliative screening scale as a useful tool for clinicians’ assessment of palliative care needs of pediatric patients: a retrospective cohort study

“…We conducted a retrospective cohort study of patients referred to the PPC team. In Korea, palliative care was a very unfamiliar concept, and only a few doctors were confident with it [17,18]. Therefore, we assumed that primary care physicians had a lack of knowledge in PPC.…”