Advance care planning and the parental geographical background in pediatric palliative home care: a retrospective chart review

Abstract

The relevance to acknowledge the parental migration history in pediatric palliative care is widely recognized. However, its influence on integral parts of advance care planning (ACP) is unknown. In this non-interventional cohort study, we aimed at identifying systematic differences between pediatric palliative patients with varying parental countries of origin regarding medical orders for life-sustaining treatment and the location of patients' death. Two hundred eighty-eight pediatric cases in an ambulant pediatric palliative care setting in Germany were retrospectively analyzed using multinomial logistic regression models. Agreements on medical orders for life-sustaining treatment (MOLST) differed significantly between patients with varying parental countries of origin. Full code orders for life-sustaining treatment were made more often in Turkish families than in German families. There were no significant associations between the patients' location of death and the parental countries of origin. However, confounder-analysis revealed a strong association between the patients' underlying disease and the orders for life-sustaining treatment as well as the location of death.Conclusions: Even this study indicates that the parental geographical background as an important sociocultural aspect might have an impact on ACP decisions for children and adolescents with life-limiting conditions, other factors as the patients' underlying disease can be more crucial for decision making in pediatric palliative care. The reason for the differences found might lay in cultural preferences or barriers to appropriate care. The inclusion of sociocultural aspects in decision-making is crucial to guarantee culture-sensitive, patient-centered pediatric palliative care.

Keywords: Advance care planning; Cultural background; Culturally competent care; Medical orders for life sustaining treatment; Palliative care; Pediatrics.

Fig. 1

Distribution of pediatric palliative care endpoints in relation to the parental geographical background. 1A Distribution of agreements on medical orders for life-sustaining treatment in relation to the parental geographical background. Medical orders for life-sustaining treatment were made in mutual agreement with a pediatrician of the pediatric palliative care team and the patients’ parents. These agreements were retrospectively categorized in Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) orders if the agreements included comfort care only (including nasopharyngeal suctioning), Treatment Limitations if the agreements included some but not all measures of life sustaining treatments, and Full Code if the agreements at least included all three of the following measures: cardio-pulmonary resuscitation, cardiac massage, and intubation (or tracheostoma). 1B Overview on the location of death of patients which received pediatric palliative care between January 2013 and December 2018. Deaths which occurred until December 2019 were included in the statistical analysis. The category “At Home” refers to the patients’ primary location of care, e.g., at their parents’ place or at a nursing home