We conducted a retrospective observational study by means of a questionnaire to assess patient needs and end-of-life care as perceived by parents who lost children to predictable causes of death between June 2014 and June 2017 in the Department of Paediatrics of the HCUVA.

We classified participants into 3 groups based on the team responsible for delivering end-of-life care:

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  PPC group, managed by the PPC team.

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  Non-PPC group, managed by paediatricians not specialised in palliative care: the original care team (paediatric neurology or oncology) or the paediatric intensive care unit team.

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  Neonatal group, managed by the neonatal intensive care unit team. The PPC team was also not involved in the care of the neonatal group, but we wanted to differentiate this subset due to the particular characteristics of death in the first month of life and the high complexity of the required care, which precluded the discharge from hospital of the patient before death.

We invited to participate all parents of a child managed in the Department of Paediatrics of the HCUVA that died between June 2014 and June 2017 as a result of a life-threatening or life-limiting disease (defined based on the classification of the Association for Children with Life-threatening or Terminal Conditions and their Families of 19975) and able to read Spanish. We excluded parents whose child died within 24h of birth.

To assess the perceptions of parents, we used the Parental PELICAN questionnaire (PaPEQu), designed and validated in Switzerland in the framework of the Paediatric End-of-LIfe CAre Needs project (PELICAN, 2012–2015, NCT01983852).6,7 The PaPEQu allows the retrospective evaluation of parental experiences and needs during their child's end-of-life care and to evaluate the quality of paediatric and neonatal care as perceived by parents.6 We translated the Italian version of the questionnaire to Spanish following the international guidelines for the translation of questionnaires of the Global Asthma Network published in 2015.8

The PaPEQu is structured into 6 thematic domains regarding the quality of family-centred cared, identified by the Initiative for Paediatric Palliative Care investigator team9 and adapted by Truog et al.10 The 6 domains conform to the evidence that is currently available and are: (1) support of the family unit, (2) communication, (3) shared decision-making, (4) relief of pain and other symptoms, (5) continuity and coordination of care and (6) bereavement support.7 Each domain includes items that assess the needs of parents and items that assess their experiences. Lastly, parents are asked to rate their overall satisfaction with each domain of care. The questionnaire also has open-ended questions asking parents to describe 3 positive and 3 negative experiences related to their child's end-of-life care.

We used 2 slightly different versions of the PaPEQu: the neonatal version and the general version. Appendix A presents the full list of items in each of the Spanish versions of the PaPEQu.

We set an α level of 5% in the tests used for comparison of the 3 groups of parents. When the dependent variable was quantitative, we used the nonparametric Kruskal–Wallis test. In addition, to compare parents two by two, we used the Mann–Whitney U as a nonparametric post hoc test with the Bonferroni correction to protect from the increased probability of a type 1 error. When the dependent variable was qualitative, we compared the 3 groups of parents with the likelihood ratio. We performed all the statistical analysis with the software SPSS 19.0.

Fig. 1 presents the recruitment process for obtaining the study sample.

Figure 1.

Flow chart of recruitment and participation.

Neonatal, group managed by the Neonatal Intensive Care Unit team; Non-PPC, group not managed by the PPC team; PPC, group managed by the Paediatric Palliative Care team.

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We telephoned parents that met the inclusion criteria and whose child had not died in the first 24h post birth to give them information about the study and request their participation. If families agreed to participated, we mailed an envelope to the home containing a letter that presented the study, the informed consent form and 2 questionnaires. We considered submission of a completed questionnaire a formal agreement to participation in the study. We recruited families between July and August of 2017.

The participation rate was of 43.8%, corresponding to 28 of the 64 eligible families that we were able to get in touch with. Participation was similar in the 3 groups under study (Fig. 1).

We sent 2 copies of the questionnaires to the 55 families that initially agreed to participate in the study (1 for the father and 1 for the mother). Thus, we sent out a total of 108 questionnaires (there were a few single parent households) and we received 46 completed questionnaires from 28 families (response rate of 42.6%).

Table 1 presents the demographic and clinical characteristics of the sample of deceased children by study group. The largest was the neonatal group (n=12), which included premature newborns with respiratory, gastrointestinal, infectious or neurologic complications and 1 newborn with polymalformative syndrome.

Table 2 presents the sociodemographic characteristics of the parents that participated in the study. Mothers participated in a greater proportion compared to fathers. The majority of participants were native Spaniards (89.1%), while 10.9% of parents were immigrants.

The scores in the need-related items were high, with little variation between the 3 groups, with the exception of items pertaining bereavement support (domain 6). In this domain of quality of care, parents in the different groups differed in the importance they assigned to each of the needs that the questionnaire asked about (Fig. 2).

Figure 2.

Parental needs regarding end-of-life care and bereavement support (domain 6) rated on a scale from 0 to 6.

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In the overall sample, the needs that felt most important to parents in end-of-life care were choosing the place of death (mean, 4.52; standard deviation [SD], 2.09), receiving support from the care team in the hours following the death of the child (mean, 4.40; SD, 1.95) and giving families and/or friends the opportunity to say goodbye to the child (mean, 4.37; SD, 2.11).

For parents in the PPC group, choosing the place of death was significantly more important than for parents in the other 2 groups (P<.05). Parents of newborns ascribed significantly less importance to the presence of members of the care team in the child's funeral compared to parents in the other 2 groups (P<.01). Compared to parents in the PPC group, parents of newborns also ascribed less importance to the opportunity for family and/or friends to say goodbye to the child (P<.01) and to keeping in touch with someone from the care team after the child's death (P<.01).

In general, parents rated their experiences with the end-of-life care of their children as positive (Fig. 3). In the overall sample, the highest scores corresponded to the domains of relief of pain and other symptoms (mean, 5.35; SD, 1.0) and the continuity and coordination of care (mean, 5.31; SD, 0.94). The lowest scores corresponded to bereavement support (mean, 4.55; SD, 1.65) and shared decision-making (mean, 4.61; SD, 1.77).

Figure 3.

Parental experiences and satisfaction with child's end-of-life care in the different quality of care domains rated on a scale from 0 to 6.

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Parents of children managed by the PPC team reported the most positive experiences in the 6 domains of quality of care, with significantly higher scores in the support of the family unit, communication, shared decision-making and bereavement support domains (P<.05). Parents in the neonatal group reported the least positive experiences in every domain except the relief of pain and other symptoms, in which the least positive experiences were reported by the non-PPC group.

The scores parents gave to their overall satisfaction with the received end-of-life care were higher compared to the scores given to their experiences (Fig. 3). In the overall sample, the highest scores were given to the domains of communication (mean, 5.46; SD, 1.17) and shared decision-making (mean, 5.42; SD, 0.92). The lowest scores corresponded to bereavement support (mean, 4.98; SD, 1.57) and support of the family unit (mean, 5.02; SD, 1.54).

In agreement with the reported experiences, the satisfaction of parents in the PPC group was higher in the 6 domains of quality of care, with significantly higher scores given in every domain (P<.05) except relief of pain and other symptoms.

In the non-PPC and neonatal groups, we found differences in how parents rated experiences versus satisfaction (Fig. 3). The satisfaction with shared decision-making of parents in the non-PPC and neonatal groups was higher than expected. Although based on the section devoted to experiences decision-making “was not discussed”, parents agreed with the decisions made and accepted them well. Similarly, in the non-PPC group, while parents reported having the experience that relief of pain and other symptoms “was not achieved”, they expressed a high degree of satisfaction with the implemented interventions and the management of pain and other symptoms.

During the illness, children and their parents had access to a wide range of support services. In the overall sample, the services used most frequently were psychological support (47.8%), grief counselling (28.3%) and spiritual counselling (26.1%). The neonatal group had the least access to these support services: 34.8% of parents in this group reported having access to none of these services, and only 17.4% received psychological support.

In general, parents reported very positive experiences in their communication with the health care team in charge of the patient (Fig. 4). Once more, the most positive experiences were reported by parents in the PPC group.

Figure 4.

Parental experience with the communication with the care team at the end of life of the child, with each item rated on a scale from 0 to 6.

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We asked parents in the PPC and non-PPC groups about what the child had been told about his or her impending death; 69.6% of parents stated that their children could not be informed due to their young age or mental status, while 21.7% did not want death to be discussed with their children. Only 2 children were told that they were going to die.

The experiences of parents in shared decision-making corresponded to the lowest scores in the 6 domains of quality of care in the non-PPC (mean, 4.17; SD, 2.12) and neonatal (mean, 3.76; SD, 1.76) groups. However, the overall level of satisfaction of the parents with this domain was high (Fig. 3).

In the total sample, 50% of parents considered that they had made a decision regarding the use of cardiopulmonary resuscitation (CPR) in their children (Table 3). A much greater proportion of parents were involved in this decision in the group managed by the PPC team (73.3%; P=.1). Parents reported that decisions regarding resuscitation were made jointly by the family and care team in 52.2% of cases.

When it came to the withdrawal or withholding of treatment, 89.1% of parents confirmed that they had been informed of the discontinuation of ineffective treatments (Table 3). In the PPC group, 66.7% of parents reported that the decision to withdraw these treatments was made jointly by the family and the care team. In contrast, higher proportions of parents in the non-PPC and neonatal groups reported that this decision was made independently by the care team (37.5% and 50%, respectively).

The symptoms that concerned parents the most at the end of their children's lives, selected out of a list with more than 10 options, were respiratory distress and pain.

We asked parents in the PPC and non-PPC groups about the health care staff that was most involved in supporting them and helping them organise the care of their children. The most frequent answer in the PPC group was the PPC team (93.3%), compared to a hospitalist in the non-PPC group (62.5%). However, we found that 25% of parents in the non-PPC group reported that nobody helped them organise the end-of-life care of their children.

The scores parents gave to their experiences in relation to the end-of-life care of the child were among the lowest in the 6 domains of quality of care in the non-PPC group (mean, 4.27; SD, 1.65) and the neonatal group (mean, 3.85; SD, 1.74) (Fig. 3). This was also reflected in the reported overall satisfaction, with a significantly lower level of satisfaction in parents in the non-PPC group (mean, 4.63; SD, 1.77) and in the neonatal group (mean, 4.43; SD, 1.73) compared to parents in the PPC group (mean, 6.00; SD, 0.00; P<.01).

All children managed by the PPC team died at home, accompanied by their parents and close relatives or friends. In the neonatal group, all newborns died in the neonatal intensive care unit, 30.4% of parents were not present when their children died, and only 34.8% of parents were accompanied by family or close friends.

In our sample, 67.4% of parents reported not using any form of bereavement support. Once again, the neonatal group was by far the group with the least access to support services, with 87% of the parents not receiving any form of support and only 8.7% receiving psychological care.

Parents described 3 positive and 3 negative experiences related to the end-of-life care of their children. We categorised their responses by domain of quality of care, and the results are summarised in Table 4. Positive experiences most frequently involved the support of the family: the humanity, commitment, empathy and warmth of care teams. The most negative experiences corresponded to the neonatal group and mostly involved bereavement support and the support of the family unit. When it came to bereavement, parents complained that they were not given time with their children after death, that they were not allowed to keep the cord clamp or the ID tags or any other memento, that they would have liked to perform some form of religious farewell ritual and that they did not receive any kind of psychological support. In the support of the family domain, negative experiences had to do with particular moments where the staff exhibited a lack of empathy or rapport, feeling alone facing the death of their children, the lack of privacy and only 1 family member being allowed to be with the child in the hospital.

The purpose of asking parents about their satisfaction with the care received is to assess the quality of care.11 However, high levels of satisfaction may merely indicate low expectations on the part of parents, and thus should not be directly interpreted as evidence of high-quality care.11 A high level of satisfaction could simply indicate that there were no unexpected negative events. This was the case in the study conducted by Wolfe et al.,12 in which parents reported considerable suffering at the end of life in children with cancer at the same time as high levels of satisfaction with the care received. The assessment of personal experiences with specific aspects of care offers a more reliable picture of the quality of care that is less biased by parental expectations.7 In our study, the non-PPC group reported less positive experiences with the alleviation of pain and other symptoms, yet the satisfaction of parents in this domain was high (Fig. 3). This was also the case with shared decision-making, the domain in which parents in the non-PPC and neonatal groups reported the least positive experiences out of all 6, with which they nevertheless reported high satisfaction (Fig. 3).

Parents going through the death of a child have a strong need of compassionate professional support.7 The positive experiences described by parents most frequently involved the support received by the family: the humanity, commitment, understanding and warmth of the care staff. Some of the negative experiences described by parents also had to do with specific instances where the care team exhibited a lack of empathy or rapport with the family. Although this may only happen to a few families, we cannot take this experience lightly, as its negative repercussions could endure years after the incident.7

Parents consider straightforward, tactful, honest and clear communication essential,13–15 and the lack of information or communication are deficiencies in care delivery that are often identified in systematic reviews, such as those by Aschenbrenner et al.13 or Stevenson et al.15 In our study, the experiences and satisfaction of parents with the communication with the care team were very positive. Positive experiences predominated in the written comments of parents that involved this domain.

Many parents in our study considered that decisions regarding resuscitation and withdrawal or withholding of ineffective treatments were not made jointly by the care team and the family, but independently by the care team. These results were similar to those found in the PELICAN study,7 but contradicted the findings of previous studies on decision-making at the end of life in neonatology,16,17 which report shared decision-making of the care team and family regarding withdrawal or withholding of ineffective treatment in 84% and 92% of cases. Decision-making must pursue the best interests of the child and the family. However, health professionals and parents each have their own personal perceptions, values and interpretations of what is best for the child, and there is a power imbalance in this context.7 In light of these findings, we need to reflect, listen more attentively to families, address their needs and include parents in making important decisions for their children.

The experience of parents in the alleviation of suffering was the most positive out of the 6 quality domains, and the levels of satisfaction with the care received in this domain were also very high. The experiences related to pain relief received some of the lowest scores given by parents in the non-PPC group although, as we already noted, the satisfaction of these parents with the care received in this domain was high.

Having a specific member of the care team in charge of coordinating end-of-life care for the child and as a stable point-of-contact for the family was one of the most important needs identified by parents in our study. The continuity and coordination of care have been identified as important factors in promoting parental involvement in the care of their children, reducing frustration and improving confidence in the quality of care.18 In our study, experiences relating to the continuity and coordination of care received the second highest ratings out of the 6 domains of care. However, the level of satisfaction in this domain was lowest in the non-PPC group, with 25% of parents expressing that they had no help organising the end-of-life care for their children. In the description of negative experiences, one mother in the non-PPC group specifically stated that they were alone in the end-of-life process. Our findings support previous evidence that home care is a key factor in giving parents confidence and reassurance at the end of life of the child. In their description of positive experiences, parents in the PPC group praised the continuity of care offered by the PPC team: they were thankful that they were never alone and that they always dealt with the same providers regardless of setting, and not only in their home.

The domain corresponding to the least positive experiences and the lowest satisfaction in the non-PPC and neonatal groups was the care at the end of life and bereavement support. The involvement of the PPC team significantly improved both the experiences and the satisfaction of parents (P<.05). The health care staff should have specific training in PPC, end-of-life care and bereavement support to understand and address the needs of parents at the end of life of their children.

After the death of a child, the care must continue with the provision of bereavement support to parents. In the description of their experiences and the support services that they accessed, parents expressed their wish for psychological support in the grieving process and to meet other parents that have experienced the loss of a child.

The main limitation of our study is the small sample size (N=46 parents), on account of which the findings may not be generalisable to the rest of the population of bereaved parents in the Region of Murcia. Of all the families we got in touch with, 85.9% agreed to participate in the study, but only 43.8% of those eligible families we were able to reach ultimately completed the questionnaire (Fig. 1). This may be a source of selection bias, as it is possible only families that felt very thankful and satisfied with the care felt sufficiently motivated to complete the questionnaire. This could also explain the favourable results we found both in the reported experiences and levels of satisfaction.