What is children’s palliative care?
Palliative care for children is a holistic and family centred approach to care. The key principles are the support of the child and family and the focus on quality of life through the management of symptoms, the provision of respite care and care through death and bereavement.
In Ireland, approximately 450 children die each year, 350 from life-limiting conditions. The World Health Organisation (2008) highlights that effective palliative care encompasses a multidisciplinary approach that includes the family and utilises community resources and can be provided in tertiary care facilities and in children’s homes.
In Ireland, the Department of Health and Children published ‘Palliative Care for Children With Life-Limiting Conditions in Ireland- A National Policy (2009)’ . This policy provides the foundation for the development of paediatric palliative care services in Ireland and outlined the four key principles which should encompass future developments in Irish children’s palliative care: inclusiveness, partnership, comprehensiveness and flexibility.
- The inclusiveness aspect incorporates that regardless of the child’s geographical location, age or culture the child should be able to access specialist palliative care.
- The partnership approach is advocated in all professionals caring for the child and family. Parents should be able to participate and be equal partners in their child’s treatments and care planning.
- The comprehensiveness aspect suggests that care should be holistic and include the child and family.
- The flexibility in care provision must allow for the individual and continual changes in the child and family’s needs and high quality care should be available and accessible regardless of location or diagnosis.
What are the various levels of palliative care specialisation?
- Level 1 – Palliative Care Approach
This is where healthcare professionals are engaged in the principles of palliative care practices when required and these patients may not require referral to specialist palliative care.
- Level 2 – General Palliative Care
This level requires the healthcare professionals providing palliative care to have additional education and expertise.
- Level 3 – Specialist Palliative Care
This level of specialist practice requires the health care professionals to focus solely on the provision of palliative care. Therefore the care will include patients with complex and challenging palliative care needs which requires a greater level of skills and knowledge of professionals and greater education, training and resource allocation.
What are the key aspects in palliative care for adolescents?
Adolescence is a time where there is often a conflict in the areas of decision making, desire for greater freedom and independence, and in the development of new experiences. The Department of Health and Children Palliative Care For Children With Life-Limiting Conditions in Ireland- A National Policy (2009) highlighted the challenges and improvements required in providing palliative care for this group. The key aspects were improved transitioning from paediatric to adult services. The continual need for improvements in hospital facilities and opportunities for privacy and communication and interaction with adults was highlighted. A pivotal recommendation was further education for professionals caring for adolescents and recognition of adolescent’s participation in decision making around their treatments and care plans.
What is the difference between children’s and adult palliative care?
Children’s palliative care differs from adult palliative care in a number of ways. The number of childhood deaths is small. Children who have life-limiting conditions often have rare conditions that are specific to childhood. Therefore predicting a prognosis is challenging and the palliative phase may be longer and unpredictable. It must be remembered that parents and siblings will need continual support and resources. Children’s palliative care needs will need to addressed within an understanding of their level of comprehension and be mindful of their age and stage of development. The importance of children continuing to engage in play education and recreational activities is essential. A number of children requiring palliative care have life-limiting conditions and these children may live for many years with these conditions. Therefore, children’s and adult’s palliative care needs are differing and distinct.
What are the key skills that staff working in children’s palliative care need?
Health care professionals require the ability to assess and manage the child’s symptoms during illness and at end of life, provide the necessary psychosocial supports for children and their families and meet their spiritual needs. This care also encompasses the professionals working within a multi-disciplinary team utilising the necessary facilities and resources available in a community or acute care service.
What is the difference between a life-limiting and a life-threatening disease?
Life-limiting conditions are those for which there is no reasonable hope of cure and from which children will die. These conditions cause slow deterioration over time and the child will become increasingly dependent on parents and carers. Life-threatening conditions are those for which curative treatment may be feasible but can fail, for example in oncology.
LauraLynn and The Irish Hospice Foundation (2013) completed a National Needs Assessment of Respite Services for Children with Life-Limiting Conditions and their families in Ireland. This report highlighted that presently, accessibility to respite services are based on geographical location and the child’s diagnosis. It also highlighted there is a growing need for respite services and these should be available within and outside the child’s home.
What is end-of-life care?
The end-of-life phase begins when a judgement is made that treatment is no longer an option and the child will die. However, the goal is that the child will live as well as possible and their quality of life is paramount. It focuses on preparing for death and managing the end stage of a terminal medical condition. This includes care, during and around the time of death, and afterwards. It enables the supportive and palliative care needs, of both the child and the family to be met, through support and psychological care. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support and support for the family into bereavement.
What should be included in an end-of-life care pathway?
In this care plan, the child’s comfort should be paramount and the family’s wishes documented and clear communication between the family and professionals. The care should include details of emergency treatments to be taken.
What do children’s hospices provide for children and their families?
Children’s hospice services provide palliative care for children and young people with life-limiting conditions and their families. Delivered by a multi-disciplinary team and in partnership with other agencies, children’s hospice services take a holistic approach to care, aiming to meet the needs of both child and family – physical, emotional, social and spiritual – through a range of services.
The services provided at the LauraLynn, Ireland’s Childrens’ Hospice include:
- Transitional Care from hospital to home
- Respite Care – including day/overnight
- 24 hour crisis care and telephone contact
- Paediatric palliative care
- Assistance in identifying and accessing support within local communities
- A member of our team will be assigned to each family
- Practical support from birth to families
- Support in the home
- Parent training
- A range of therapeutic interventions
- Support and advice in relation to hospital appointments/admissions
- On-going review of each child’s needs and services required
- Day and overnight accommodation for families
- Liaising with other agencies
What other websites are useful sources of information for Health Care Professionals involved in Palliative Care?
You will find a list of other relevant organisation websites here