Characteristics of children in need of palliative care

Among the Nordic countries, Sweden has the largest population with 10.5 million inhabitants, and the largest child population, with almost 2.5 million children (Table 1). The child population (0–19 years) in the Nordic countries ranges from 21 to 28% of the total population. The Faroe Islands and Greenland stand out with the highest proportion of children with 28% and 27%, respectively.

Table 1 Data and estimates of the child population in the Nordic countries a

Even though the Nordic countries have well-developed health statistics for specific diagnosis or conditions, none of the Nordic countries have specific statistics comprising one register for PPC that cover all LL/LT conditions that affect children. As a result, no fundamental statistics exist for children with LL/LT in the Nordic countries. The number of children in need of palliative care is estimated to be equivalent to around 41,200 children living with LL/LT conditions in Nordic countries. The total number of children dying each year is small in all the Nordic countries and includes children dying from other conditions than LL/LT, such as accidents and suicides. Altogether, the Nordic child population consists of more than six million children (0–19 years), of which only 0.03% die each year. The estimates of children (0–19 years) in need of palliative care in each country are shown in Fig. 2.

Fig. 2

Estimates of children (0–19 years) with palliative care needs in each Nordic country in January 2023, based on Fraser et al. 2021 [6]

Care models and settings of care

Variations in the recognition and understanding of PPC have implications for healthcare provision in the Nordic countries, leading to variations both between countries or geographical areas and between different care organizations. Over time, the focus on defining the levels of PPC and on end-of-life care has changed towards recognizing the need for early and continuous integration of PPC as part of all care of children with LL/LT. In Denmark and Norway, the national authorities have provided guidelines for PPC, while in Sweden, children are about to be included in the revised National Health Association guideline for palliative care, which previously only includes end-of-life care for adults. Furthermore, PPC is one of several focus areas of care that have been identified as nationally prioritized by the authorities in Sweden. In Finland, the Ministry of Social Affairs and Health have given recommendations on palliative care and PPC services, and regional advance care plans are currently under revision to support the development of national guidelines preliminary being launched in 2025. In Denmark, Norway, and Sweden, national clinical guidelines are produced, and the implementation is ongoing. Åland follows Finland’s jurisdiction and PPC guidelines, while the Faroe Islands and Greenland follow Denmark’s jurisdiction and PPC guidelines. In Iceland, informal collaborations between healthcare facilities regarding palliative care compensate for the lack of national guidelines regarding PPC. In Denmark and Norway, the national government has dedicated funding for the development of specialized PPC on equal terms. In Sweden, local and regional self-governing means that national investments are prioritized independently so that PPC in some geographic regions have a more or differently developed PPC than other regions.

Most of the care for children with LL/LT conditions is provided as part of the publicly financed healthcare. Thus, the care models and settings of care for these children are carried out as multiprofessional care for the whole family at wards and facilities specializing in pediatrics, being supplemented by services for providing homecare, PPC consultations, or hospice care. PPC is sometimes organized with different levels of formal and informal collaboration with adult palliative care facilities.

Homecare services have been and are being developed continuously within several Nordic countries. Because of structural, traditional, and variance in geography and population density, with both large areas of sparsely populated areas and densely populated cities, countries have focused on different versions of homecare services. In some areas, homecare services are provided as hospital-based home services organized from a pediatric service, reaching from single hours per week to 24/7 access. In other areas, homecare is provided by community services, which is often specialized mainly in adult care. Often, for a child to receive PPC at home, a collaboration between community healthcare providing ongoing care and hospital-based services for procedural services is required. However, although homecare is offered throughout the child’s illness trajectory in some areas, it is offered exclusively for children receiving end-of-life care in other areas. Single pediatric hospices or pediatric palliative in-patient care wards are offered in Denmark, Norway, and Sweden, and in Iceland a care facility offering respite care for children with LL/LT is available, however, such services often reach a limited number of Nordic children in need of PPC.

Furthermore, in each of the health regions in Norway (n = 4) and Denmark (n = 5), health services are obliged to provide local and/or regional PPC teams, and in Finland, all five university hospitals provide the same. Regional PPC teams in Norway and Denmark are located at university hospitals, and team members include clinicians from different disciplines and professions, with years of experience with children with LL/LT conditions and their families. Their mandate is to build and provide knowledge, guidance, and support for healthcare personnel in their patient care. In addition, some regional teams also have a local role in which they provide first-hand PPC. In Iceland, informal collaboration is arranged together with adult palliative care teams according to each child’s needs. In Sweden, the provision of PPC consultations varies in a range from locally or regionally organized PPC teams from pediatric or palliative care services to no formal services focusing on PPC.

In all Nordic countries, multiprofessional habilitation and rehabilitation services for children with LL/LT are available for children in need of such services. Although they are often organized in different ways, they are commonly provided as part of hospital based pediatric neurology and within primary care or as residential institutions for children. The estimated most common place of childhood deaths is in a hospital, with variations in relative percentage depending on country, illness and age of the child, as well as over time. In general, there is no exact information about place of death for children in need of PC in the Nordic countries. A Danish study found that in 2011–2014, 89% of all children dying, died in a hospital, 5% died at home and 6% died other places than hospital or home. Further the study demonstrated a decrease of home deaths for these years compared with the period of 1994–1998 [25].

To collect data regarding those in need of palliative care, some registry initiatives exist. In Denmark, there is a recommendation to register all children affiliated with specialized PPC teams in the Danish Palliative Care Database, with quality indicators reported yearly. Sweden has a national quality register covering the symptom burden and care over the last week of life, with a total coverage of about 50% of all deaths, but currently, less than 10% of these deaths come from the child population.

Education and training in palliative care for children

With only a few exceptions, formal education in PPC is scarce and fragmented and generally lacking in all levels of education systems in all Nordic countries (Table 2). As part of the implementation of the national guidelines for PPC in Norway [26], an educational program for nurses (master’s degree level) was established in 2017 and starting in 2018 the program became interdisciplinary. Sweden developed an interdisciplinary PhD course and a course on an advanced level in PPC in 2022. A Nordic specialist course in palliative medicine (NSCPM) for physicians was established in 2003 with participants from all Nordic countries, and PPC is included in their curricula on a regular basis, however the NSCPM ends in 2025 and each Nordic country has to educate physicians in palliative care locally.

Some single courses and informal lectures on PPC lasting for a few hours exist in some bachelor education programs and higher education throughout the countries but typically as part of courses on general palliative care without specification in the curriculum. Also, as part of specializations like, for example, medical doctors (MD), special courses are provided although with a rather brief focus on PPC as part of adult palliative care education programs. There are examples of stand-alone courses in PPC and the possibility of achieving an MD specialization in PPC (Table 2). However, the field of education in PPC is developing; for example, the Danish Pediatrics Society is currently working on a curriculum for expert approval in pediatric specialized palliative care. In the future due to shortage of health care professionals, we anticipate increased involvement of nurse assistants and health care workers providing vital parts of the care for the PPC population. While education in PC exists for this group, to the best of our knowledge there are currently no formal organized PPC training programs with standardized curriculum tailored for this personnel group in any of the Nordic countries.

Table 2 Formal education and course in Pediatric Palliative Care (PPC)

National associations focusing on PPC are available in some countries, such as a pediatric section in the Association of Finnish Palliative Medicine, Danish Pediatric Society for Physicians Working with Palliative Care for Children, a special interest group for PPC in the Norwegian Pediatric Association since 2019, a multidisciplinary competence network for palliative care for children in Norway, and a multidisciplinary Swedish association for PPC. In addition, several other PPC focused networks between and within professions, organizations, regions, and illness-specific groups exist.

Research on palliative care for children in the nordic context

Overall, the current Nordic research has mainly an illness-focused approach rather than a palliative care approach. Various research environments focus on children with an LL/LT condition such as oncology, neurology, cardiology, or rare diseases, without establishing that the research is conducted with the primary aim of being within an overarching understanding of PPC. However, this research concerning children with LL/LT conditions benefits those children who are eligible for PPC. Examples include research on symptom management for various conditions, homecare for children with various conditions, also including eHealth care models, and bereavement care.

Most studies from the Nordic countries are conducted as qualitative, epidemiological, or observational studies and aim to describe the population and the needs of the child throughout the illness trajectory [25], their families [3, 27,28,29], and healthcare professionals working within PPC [16, 17, 30]. Common designs include cross-sectional studies, registry-based studies, and qualitative interview- or focus-group studies. In addition, systematic or scoping reviews aiming to summarize evidence and identify knowledge gaps have been conducted [3, 21, 31,32,33,34]. Some studies exist regarding implementation and models of care interventions [35], aiming to support symptom management and family communication, and psychosocial support [36], and all countries have a research focus on homecare for children with palliative care needs [27, 30]. To provide data and enable longitudinal registry-based studies, some registries exist, such as those in Denmark [37] and Sweden [38]. Altogether, the range of interventions and implementations included in current or previous research remains limited among all Nordic countries even if good example exists [39,40,41].

In PPC, research is more often conducted with parents, siblings, or healthcare professionals rather than with children themselves; similarly, healthcare professionals are often included to share their experiences. Thus, a common limitation of previous Nordic research is the lack of ill children’s voices with their needs and experiences explained in their own words, which remains present in all research designs, with some exceptions [42, 43]. Ongoing research has a stronger emphasis on the inclusion of the ill children’s voices because they have a right to be heard.

To establish a clear direction for research in the Nordic countries, several initiatives have been made by researchers in a Nordic PPC context to systematically scope or summarize previous international research. This includes family [3, 44] and healthcare professionals’ experiences in home-based PPC [33], experiences with the organization of palliative care for children with LL/LT conditions and their families [3, 34], the use of eHealth in home-based PPC [31], current possibilities for children’s reporting of their own symptoms [32], and predictors for place of death among children [45]. In addition, a systematic review has focused on knowledge translation in PPC, finding that formalized education in a specialized setting is most often used to support knowledge translation [21].