End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?

All patients who received care from the PPCTs during the study period were included and were followed up until death under the responsibility of the team’s care, at which time data collection was performed. We had a clinical contact point (pediatrician or nurse) in each PPCT for data collection which was carried out using a standardized form and the analysis of medical records. Deceased patients for whom no data were obtained were identified as missing.

Most of the PPCT in our country work in a homogeneous way. They provide patient care regardless of where the patient is, hospital or home.

Patient and family variables were collected such as sex, age, date of birth, baseline disease, date of diagnosis, date of inclusion under the PPCT, symptoms 7 days prior to death, drugs and devices in the last week and 24 h prior to death, date of death, presence of sedation and reason, cause of death, place of death, and family preferences for place of death. Variables related to the provision of services by the teams were also collected, such as year of creation, type of care (full: 24 h/7 days a week or partial: all others), and the option of making home visits.

The “Pediatric Complex Chronic Disease Classification System,” version 2, developed by Feudtner [13], was used to describe the underlying disease.

We performed the analysis by using Statistical Package for Social Sciences 26 and Jamovi 2.3. An exploratory analysis was performed to determine the nature of the distributions and to obtain statistics on central tendency, dispersion, and frequencies. The normality of the distributions was tested using the Kolmogorov–Smirnov test and asymmetry and kurtosis analysis.

Finally, multivariate logistic regression models were constructed to predict the place of death as well as compliance with advance directives. A process of intentional selection of predictors was carried out for those variables that had shown a link in the bivariate analysis, as well as those that clinically had plausibility and in the Wald test had a p value < 0.25 [14]. Covariates were eliminated from the model if they did not contribute significance or act as confounders. At the end of the iteration process, discarded variables were re-evaluated in the final model to ascertain if they made a significant contribution to the presence of other variables.

Recent prevalence studies demonstrate how the majority of children and adolescents living with a life-limiting condition (LLC) have congenital anomalies and neurological disorders [19], with cancer being the underlying disease in only 20% of children seen [20] by PPCTs. However, in our study, the majority of patients who died during follow-up by a PPCT were suffering an oncological disease as their baseline disease. This may be chiefly due to two reasons: on the one hand, cancer patients have the shortest survival time after being transferred to a PPCT [21], so it is possible that these teams care for many patients with these characteristics in end-of-life PPC, as has been seen in other publications [22], even though their follow-up time is short. On the other hand, there is probably an institutional bias towards the provision of services to oncology patients as opposed to other types of processes, which is supported by previous research reporting that existing palliative care provision is mainly directed to children with cancer [23]. Thus, parents of children with non-oncological diseases report greater unmet needs than parents of children with oncological diseases [24], which continues to highlight the differences in support that these two groups receive which are better established for cancer. Therefore, one of the key objectives in end-of-life strategies is to extend palliative care to patients with non-cancer diagnoses.

One important aspect of the palliative care approach is the planning of care, which has been shown to be beneficial to the child and family [25]. Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families’ preferences [26], including the location in which patients and their families wish to receive care towards the end of life. It is important to discuss the possible expected evolution throughout the course of the disease. End-of-life care should begin to be addressed early enough for the family to have time to prepare [27, 28] and become aware of death as one of the options, especially if the disease has a long trajectory. The end of life and its environment should be prepared and defined according to the child’s wishes and available resources.

Our follow-up time of the patient and family by the PPCT was slightly more than 2 months, less than previously described in other studies [29], without finding differences in terms of underlying disease. One of the most common barriers described in the literature [30] is that the responsible physicians think that the family is not ready to receive PPC and therefore delay or prevent this referral. There are studies [31] that describe how parents, with follow-up time by the PPCT, become increasingly skilled and adept at supporting care, managing symptoms, and administering medications to their child. Our study identifies how longer care by the PPCT is significantly associated with death at home and with the family expressing its preferences and those preferences being complied with. For this reason, early referral of patients to PPCTs is important in order to get to know the child and family and thus explore future prospects, anticipate more gradually, and incorporate family preferences regarding their child’s care. Key aspects for this early referral to PPCTs suggested by some authors focus on the formation of a formal PPC program, the launch of an educational campaign, and a PPCT expansion plan [32].

However, after creating PPCTs, they must also be maintained over time. The professionals who make up the PPCTs feel that “no formal ratification of the intervention by management” and “unsettled organisation” are limitations [33]. Our data highlight something not previously described in the literature, specifically that the more well-established PPCTs have a bearing on both the place of care and on talking to the family about their preferences.

Place of care and place of death are important factors influencing the quality of end-of-life care of dying people and often the latter as quality indicators in the evaluation of pediatric palliative care. Although international organizations state that family-centered home care is the goal of pediatric palliative care [23], the majority of terminally ill children die in hospitals [34]. As described in the literature, the proportion of deaths at home varies widely among populations with frequencies ranging from 7% in South Korea [34] to 45% in England [35] or 86% in Germany [36]. Our sample is situated in the middle. However, we should be cautious as epidemiological data on the place of death are not necessarily representative of the preferred location of death.

The publication of a recent meta-analysis reveals how the older age of the child and cancer diagnoses appear to be independent predictors of home death among children [37]. This relationship with the underlying disease had also been found in other studies [38]. However, in our sample, we found no significant relationship between age or baseline disease and place of death. The latter can be explained by the fact that in Spain most of the PPCT services have been based on initiatives outside oncology, and although we cannot ignore the fact that for patients with diseases other than cancer, there are barriers to inclusion in PPCT, such as the less predictable nature of most non-malignant diseases and the associated difficulty in identifying a terminal stage [39], once overcome, clinicians feel able to assume the end of life at home in these patients as well.

In addition, it has been shown that increased PPCT increases the number of deaths at home [40] and that without PPC provision, there was a long-term trend of dying away from home [41]. Families should have a choice of where end-of-life (EOL) care is provided with home as one option. Having a PPCT offering 24 h/7 days care [21, 42] increases the probability of dying at home, a relationship also found in our study and with an even greater association if professionals who provided out-of-hours care are included, although previously published studies describe working outside working hours as “exhausting” and not sustainable in the long term [43].

Regarding family decision-making about the place of care at the end of life and death, these are affected by personal, interpersonal, temporal, and disease-related factors [44]. In agreement with previous studies, those families who had made a decision showed a preference for death to occur at home [45, 46]: 56% in our study. But not only do we have to pay attention to what the parents want, but also to how the parents make a decision when given a choice about their child’s death and place of death. Parents should be provided with timely, detailed, and immediate information about their child’s diagnosis, clinical status, and prognosis in an appropriate and safe environment and should be invited into the decision-making process as each party will need the other to achieve their common goal: to give the sick child the best possible option [47].

The cohort included patients managed in the period under study from 14 different geographical areas, which guarantees good external validity.

The heterogeneity in mortality rates between centers. Also, data collection was based on the review of health records, with the limitations that this method entails [48].