Expert survey on coverage and characteristics of pediatric palliative care in Europe - a focus on home care.

BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.

Neonatal donation: are newborns too young to be recognized?

Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of awareness of this option. This study provides insight into potential neonatal organ and tissue donors and reports on how many donors were actually reported to the procurement organization. We performed a retrospective analysis of the mortality database and medical records of two largest neonatal intensive care units (NICUs) in the Netherlands. This study reviewed records of neonates with a gestational age >37 weeks and weight >3000g who died in the period from January 1, 2005 through December 31, 2016. During the study period, 259 term-born neonates died in the two NICUs. In total, 132 neonates with general contra-indications for donation were excluded. The medical records of 127 neonates were examined for donation suitability. We identified five neonates with documented brain death who were not recognized as potential organ and/or tissue donors. Of the remaining neonates, 27 were found suitable for tissue donation. One potential tissue donor had been reported to the procurement organization. In three cases, the possibility of donation was brought up by parents.Conclusion: A low proportion (2%) of neonates who died in the NICUs were found suitable for organ donation, and a higher proportion (12%) were found suitable for tissue donation. We suggest that increased awareness concerning the possibility of neonatal donation would likely increase the identification of potential neonatal donors. What is Known: • There is an urgent need for very small organs and tissues from neonatal donors What is New: • A number of neonates who died in the NICU were suitable organ or/and tissue donors but were not recognized as donors. • Knowledge on neonatal donation possibilities is also important for proper counseling of parents who sometimes inquire for the possibility of organ and tissue donation.

Breaking bad news: what parents would like you to know.

OBJECTIVE: Breaking 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. DESIGN: A qualitative study consisting of a constant comparative analysis of in-depth interviews conducted with parents. SETTING: The Netherlands. PARTICIPANTS: Sixty-four parents-bereaved and non-bereaved-of 44 children (aged 1-12 years, 61% deceased) with a life-threatening condition. INTERVENTIONS: None. RESULTS: Based 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. CONCLUSIONS: This 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.

Pediatric Brain Tumors: Narrating Suffering and End-of-Life Decisionmaking.

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children's lives.We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions.

Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands.

OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions. DESIGN: In 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. SETTING: The Netherlands. PARTICIPANTS: 64 parents of 44 children. RESULTS: Parents 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. CONCLUSIONS: The 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.

The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians' critical reflections.

BACKGROUND: Because of practice variation and new developments in palliative pediatric care, the Dutch Association of Pediatrics decided to develop the clinical practice guideline (CPG) palliative care for children. With this guideline, the association also wanted to precipitate an attitude shift towards shared decision-making (SDM) and therefore integrated SDM in the CPG Palliative care for children. The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians' attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs. METHODS: Semi-structured face-to-face interviews. Pediatricians (15) were recruited through purposive sampling in three university-based pediatric centers in the Netherlands. The interviews were audio-recorded and transcribed verbatim, coded by at least two authors and analyzed with NVivo. RESULTS: Some pediatricians considered SDM a skill or attitude that cannot be addressed by clinical practice guidelines. According to others, however, clinical practice guidelines could enhance SDM. In case of the guideline Palliative care for children, the recommendations needed to focus more on how to practice SDM, and offer more detailed recommendations, preferring a recommendation stating multiple options. Most interviewed pediatricians felt that patient decisions aids were beneficial to patients, and could ensure that all topics relevant to the patient are covered, even topics the pediatrician might not consider him or herself, or deems less important. Regardless of the perceived benefit, some pediatricians preferred providing the information themselves instead of using a patient decision aid. CONCLUSIONS: For clinical practice guidelines to potentially enhance SDM, guideline developers should avoid blanket recommendations in the case of preference sensitive choices, and SDM should not be limited to recommendations on non-treatment decisions. Furthermore, preference sensitive recommendations are preferably linked with patient decision aids.

Thresholds for Resuscitation of Extremely Preterm Infants in the UK, Sweden, and Netherlands.

BACKGROUND: It is widely acceptable to involve parents in decision-making about the resuscitation of extremely preterm infants (EPIs) in the gray zone. However, there are different views about where the boundaries of the gray zone should lie. Our aim in this study was to compare the resuscitation thresholds for EPIs between neonatologists in the United Kingdom, Sweden, and the Netherlands. METHODS: We distributed an online survey to consultant neonatologists and neonatal registrars and fellows that included clinical scenarios in which parents requested resuscitation or nonresuscitation. Respondents were asked about the lowest gestational age and/or the worst prognosis at which they would provide resuscitation and the highest gestational age and/or the best prognosis at which they would withhold resuscitation. In additional scenarios, influence of the condition at birth or consideration of available health care resources was assessed. RESULTS: The survey was completed by 162 neonatologists (30% response rate). There was a significant difference between countries; the gray zone for most UK respondents was 23 + 0/7 to 23 + 6/7 or 24 weeks' gestation, compared with 22 + 0/7 to 22 + 6/7 or 23 weeks' gestation in Sweden and 24 + 0/7 to 25 + 6/7 or 26 weeks' gestation in the Netherlands. Resuscitation thresholds were higher if an infant was born in poor condition. There was wide variation in the prognosis that warranted resuscitation or nonresuscitation. Consideration of resource scarcity did not alter responses. CONCLUSIONS: In this survey, we found significant differences in approach to the resuscitation of EPIs, with a spectrum from most proactive (Sweden) to least proactive (Netherlands). Most survey respondents indicated shifts in decision-making that were associated with particular weeks' gestation. Despite the different approaches to decision-making in the 3 countries, there was relatively little difference between countries in neonatologists' prognostic thresholds for resuscitation.

Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands.

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.

Should Pediatric Euthanasia be Legalized?

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.

Medication regimes in the context of end-of-life decisions in neonatology: legal considerations with regard to Dutch NICU-practice.

Developments in legal and medical research concerning end-of-life decisions regarding severely suffering neonates in the Netherlands provide good cause for reflection on specific items of this issue. This article deals with the outcomes of the first national survey on end-of-life practice in Dutch Neonatal Intensive Care Units (NICUs) and examines the legal aspects of the use of medication as a part of this practice. The authors particularly reflect on the application of analgesics and sedatives on the one hand and neuromuscular blockers (NMBs) on the other hand. Furthermore, they focus on different elements of medicinal use such as indication, the moment of administering, dosage, effects of combinations of drugs, the relationship to the causation of death and (failures in) documentation.

The influence of the cultural climate of the training environment on physicians' self-perception of competence and preparedness for practice.

BACKGROUND: In current supervisory practice, the learning environment in which the training of specialist registrars (SpRs) takes place is important. Examples of such learning environments are the hospital settings and/or geographical locations where training occurs. Our objective was to investigate whether the cultural climate of different learning environments influences physicians' perceived level of competence and preparedness for practice. METHODS: An electronic questionnaire was sent to an equal group of paediatricians who had trained in clinical settings located in Europe and the Caribbean. 30 items (Likert scale 1-4 = totally disagree-totally agree) were used to measure the level of preparedness of the respondents in 7 physician competencies. RESULTS: 42 participants were included for analysis. The distribution of participants in both groups was comparable. The overall perception of preparedness in the Caribbean group was 2.93 (SD = 0.47) and 2.86 (SD = 0.72) in the European group. The European group felt less prepared in the competency as manager 1.81 (SD = 1.06) compared to their Caribbean counterparts 2.72 (SD = 0.66). The difference was significant (p = 0.006). CONCLUSION: The training in the different environments was perceived as adequate and comparable in effect. The learning environment's cultural climate appeared to influence the physician's perception of their competencies and preparedness for clinical practice.

Implementation of a competency-based residency curriculum: experiences from a resource-limited environment in the Caribbean.

BACKGROUND: The introduction of competency-based curricula in institutions situated in resource-limited environments is likely to pose new challenges for the implementation process. The St. Elisabeth Hospital (SEHOS) in Curacao, Dutch Caribbean, is affiliated to university teaching hospitals in the Netherlands. It is a teaching hospital in a resource-limited environment. AIMS: Following the revision of the curriculum of the Dutch paediatric residency training, the country's paediatric society mandated its implementation in all training institutions within Dutch sovereignty. We set out to implement the revised curriculum in SEHOS and highlight the benefits it may have in a setting like Curacao. METHOD: The intended learning outcomes for the 16-week project were (1) the implementation of the core changes in the curriculum and (2) conduct an assessment of the learning environment. The strategies used included informative meetings, workshop and lecture-based trainings, questionnaire surveys, and focus group interviews. RESULTS: Registrars and staff were successfully trained in how to use brief clinical assessments and digital portfolios. 'Departmental portfolio' was introduced as an innovative method of evaluating and monitoring departmental educational activities. CONCLUSIONS: Competency-based curricula can be successfully implemented in resource-limited environments. Educational experts in the local setting are crucial for the success of the process.