In the current health services, the challenge is to provide appropriate palliative care services to children with a reduction of resources and staff members in the acute, community and disability sector. Therefore healthcare professionals and service providers need to deliver services in innovative ways and use best-practice models to give quality care in the current economic climate. Ireland is among only a few countries in the world to have a paediatric palliative care national policy—which is admirable—however, there is ongoing work to fully implement the recommendations to improve the quality of life of children with palliative care needs and their families.
Children’s palliative care
Palliative care for children is a holistic approach to care within a model of family-centred care (World Health Organisation WHO 1998). The basis of high-quality services requires an interdisciplinary model of care utilising all available resources to meet the needs of the child and family. It can be provided in all healthcare, disability and home settings with sufficient support and resources.
Paediatric palliative care is a new and developing nursing and medical speciality. This speciality is gaining a research base and recognition from all healthcare professionals in acute and community settings. At present, decisions are made through consultation with experts in the field and mutual agreement is obtained on future directions in children’s palliative care (Straatman et al. 2008).
Ireland’s national policy for paediatric palliative care was published in 2010 (Department of Health and Children 2010). The aim is to provide palliative care in the child’s home, where this is the child and family’s preference. The need for a nationally agreed care pathway for children’s palliative care is acknowledged in order to provide some direction for healthcare providers. Currently children with complex medical needs and life limiting conditions are attending community, acute and intellectual disability services and there is little expertise in devising integrated care pathways in conjunction with acute services for these children.
Interestingly, the development of a children’s hospice has not been seen as an urgent recommendation within national policy. Consequently, LauraLynn Hospice does not receive state funding, because it has been seen as the location of parental choice for palliative care. However, clinicians are aware that successful implementation of palliative care depends on local resources, skills of healthcare professionals and collaboration with community palliative care services that are available and accessible to families. Although home is the preferred location for many families, this option requires an appropriate local support system to be available and responsive to the child and family’s needs. Siden et al. (2008) conducted a study that analysed data for over 700 children with a wide range of life-limiting conditions and recorded the child’s place of death. Interestingly, all families had access to palliative care services in hospital, home and hospice settings. The findings stated that parents were equally divided in their preferences for each location.
Current service provision of children’s palliative care
The policy highlights that palliative care services need to be accessible, equitable, flexible and appropriate for the child and family, and to link with existing health and primary-care services. The consideration of both children with malignant and non-malignant disease is also highlighted in the policy. It is well known that children with malignant conditions are facilitated to die at home in a higher number of cases, with greater access to local adult hospice and home-care teams—and often local paediatric oncology and haematology clinical nurse specialist services in shared care settings, as well as specialist palliative-care services. The adult home care teams in the community are more familiar with the disease trajectory in oncological conditions and symptom management for these children and paediatric oncology has the best developed system of care (Lambert 2002). O’Brien and Duffy (2010) highlight that in Ireland families do not always have a choice in the location of palliative care provision for their child because services may not be available in their community or home. Therefore we need to ensure this is addressed with appropriate community-based nurses with these skills and abilities.
Our national policy highlights that palliative care should be provided by staff with children’s nursing and medical qualifications; however, in practice this is often not the case (Hill and Coyne 2012). Irish research has shown the difficulties adult trained nurses encounter in providing palliative home care for children and their families. The difficulties highlighted included that children with complex needs often have increased technological needs and unfamiliar specialist equipment, an uncertain illness trajectory, the need for paediatric medication management skills, working within a family-centred model of care, lack of transferability of adult skills, concern of their level of competency, liaising with other care providers to formulate a plan of care, general practitioner reluctance to be involved in decision making, parental expertise in care-giving activities, and the complexity of symptom management in paediatrics (O’Leary et al. 2006, Quinn and Bailey 2011). Staff within adult palliative care teams and disability, maternity, neonatal units and public health settings need to be able to access and attain palliative care education and training. This need is highlighted in the policy, but the HSE currently funds only a small number of such initiatives.
The need for accessible and responsive respite services for children with palliative care needs is highlighted in the national policy. But again, families find it increasingly difficult to access respite facilities that can accommodate children with life-limiting conditions and palliative care needs (who often have associated complex medical and technological needs) in acute paediatric units and disability services. The need for respite in and outside the home setting is highlighted in the national policy, as well as in Respite services for children with life-limiting conditions and their families in Ireland: A national needs assessment (The Irish Hospice Foundation, LauraLynn Ireland’s Children’s Hospice 2013). In the current economic climate, there has been little evidence of improvements in respite care services and the HSE plan for locally available respite services for these children. Respite services often depend on the availability of appropriate services usually supplied by the voluntary services.
Conclusion and recommendations
This policy document focuses on the need to respond to this demographic change and to cater for this group of children. It provides a future framework for this area of care and a clear direction for health professionals and stakeholders. If implemented, it can positively enhance the care of children. It will need to be continually reviewed to provide the best evidence in this area of palliative care. The improvement of communication and integration of teams working across professions and care-providers (especially between the state and voluntary sectors) is pivotal, with the use of integrated care pathways. The provision of respite services is paramount to the future of services in the home and/or appropriate local services to ensure parents are supported.