ObjectiveBreaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience communication of bad news. The objective of this study is to analyse parents’ experiences (barriers and facilitators) of communication of bad news.DesignA qualitative study consisting of a constant comparative analysis of in-depth interviews conducted with parents.SettingThe Netherlands.ParticipantsSixty-four parents—bereaved and non-bereaved—of 44 children (aged 1–12 years, 61% deceased) with a life-threatening condition.InterventionsNone.ResultsBased on parents’ experiences, the following 10 barriers to the communication of bad news were identified: (1) a lack of (timely) communication, (2) physicians’ failure to ask parents for input, (3) parents feel unprepared during and after the conversation, (4) a lack of clarity about future treatment, (5) physicians’ failure to voice uncertainties, (6) physicians’ failure to schedule follow-up conversations, (7) presence of too many or unknown healthcare professionals, (8) parental concerns in breaking bad news to children, (9) managing indications of bad news in non-conversational contexts, and (10) parents’ misunderstanding of medical terminology.ConclusionsThis study shows healthcare professionals how parents experience barriers in bad news conversations. This mainly concerns practical aspects of communication. The results provide practical pointers on how the communication of bad news can be improved to better suit the needs of parents. From the parents’ perspective, the timing of conversations in which they were informed that their child might not survive was far too late. Sometimes, no such conversations ever took place.

Polychlorinated biphenyls (PCBs) and dioxins (polychlorinated dibenzo-p-dioxins and dibenzofurans) are potentially hazardous compounds. Since food is the major source (>90%) for the accumulation of PCBs and dioxins in the human body, food habits in women determine the degree of fetal exposure and levels in human milk. In order to investigate an association between dietary intake and PCB and dioxin levels in human milk and PCB levels in maternal and cord plasma, the food intake of 418 Dutch women during pregnancy was recorded using semi-quantitative food frequency questionnaires.After adjusting for covariates, a weak association was found between the estimated dietary intake of 2, 3,7,3,7,, dioxins, and planar PCBs and their corresponding levels in breast milk. The estimated dietary intake of 2,3,7,8-TCDD, dioxins, and planar PCBs was also related to the PCB levels in maternal 4273 4274 and cord plasma. Dairy products accounted for about half and industrial oils for about a quarter of the estimated 2,3,7,8-TCDD, dioxin, and the planar PCB intake.It is concluded that the contribution of a pregnancy related diet to PCB and dioxin levels in human milk and to PCB levels in maternal and cord plasma is relatively low.Decrease of exposure to PCBs and dioxins of the fetus and the neonate probably requires long-term reduction of the intake of these pollutants. Substitution of normal cheese by low-fat cheese and the use of vegetable oils instead of fish oils in the preparation of foodstuffs by the food industry could contribute to a reduced intake of PCBs and dioxins.

ObjectiveTo identify barriers, as perceived by parents, to good care for children with life-threatening conditions.DesignIn a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed.SettingThe Netherlands.Participants64 parents of 44 children.ResultsParents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person.ConclusionsThe barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.

Voluntary active euthanasia for adults at their explicit request has been legal in Belgium and the Netherlands since 2002. In those countries, acceptance of the practice for adults has been followed by acceptance of the practice for children. Opponents of euthanasia see this as a dangerous slippery slope. Proponents argue that euthanasia is sometimes ethically appropriate for minors and that, with proper safeguards, it should be legally available in appropriate circumstances for patients at any age. In this Ethics Rounds, we asked philosophers from the United States and the Netherlands, and a Dutch pediatrician, to discuss the ethics of legalizing euthanasia for children.

The COVID-19 pandemic has disrupted grief experiences of bereaved relatives and altered accustomed ways of coping with loss. To understand how bereaved relatives experienced grief during COVID-19, a review, using the overview method, was conducted. An overview of empirical data about this subject has been lacking and therefore, PubMed and CINAHL databases were searched for empirical studies published from January 1, 2020 until December 31, 2021. 28 articles were included in the review. Thematic analysis showed different emotional responses, changes in grief, the effect of absence during final moments, a lack of involvement in the caring process, the impact on communities and social support systems and the alteration of funerals among bereaved relatives. During COVID-19, death is characterized by poor bereavement outcomes and health implications, but bereaved also show signs of resilience and coping. Directions for future research about cultural and societal differences in grief and support methods are suggested.

Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. Aim: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. Design: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). Data sources: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents’ perspectives. Results: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. Conclusions: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.

In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations-children between 1 and 12 years old-is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.

Results For 72 children (31 girls, 41 boys), 91 decision-making meetings were organised. We identified 27.7% (20/72) disagreements or conflicts: 4 simple disagreements, 12 continuing disagreements and 4 conflicts. Five children had acute disease and 15 children had chronic disease. Source of disagreements was continuing LST in 19 cases (families wanted to continue aggressive treatment). In 1 case, the family wanted to stop treatments despite medical opinion (refusal of tracheotomy). Consequences of theses disagreements were continuation of treatments despite LST decisions in 12 cases. For 3 cases a compromise solution was found. Conclusion Disagreements are frequent in decisions to forgo LST (27,7%) and most of the child undergo treatments that are medically futile. Background and aims In a previous study on suffering of children during admission to a paediatric intensive care unit (PICU), we found that parents described suffering of their child mainly in relation to physical symptoms. In this study we evaluated if these children still have signs of suffering four years after the PICU admission and if the symptoms of suffering, as perceived by the parents, are different compared to the PICU period. Methods A structured audio taped interview with 15 parents of children four years after admission to a 20 bed level III PICU of a university teaching hospital to assess whether their child perceived to suffer and to identify perceived aspects of suffering. Results About 50% of the parents experienced 4 years after PICU admission suffering in their child. Parents of 8 children did not perceive suffering in their child. Parents indicated that the suffering during the PICU admission was due to physical and psychosocial factors. Psychosocial factors were related to the disease causing the admission to the PICU, the treatment and the hospital stay. Four years later the signs of suffering are related to communication, physical and mental retardation and being different from mates. Conclusions A child's admission to a PICU and its suffering not only cause suffering in the child during admission, but often suffering is still present four years after admission. Caregivers in paediatrics need to be aware of these perceived symptoms. In long-term follow up of critically ill children this phenomena needs attention. PO-0319 IS THERE SUFFERING IN CHILDREN FOUR YEARS AFTER