Many children who have palliative care needs are cared for at home. In this section Dr Maria Brenner, Tyrone Horne and Grace Stewart offer practical advice on moving from care in a professional environment to caring for a child at home.
This is one of two types of “transition care” that a child who has a palliative care need may undergo. The other is when they move from a child care setting to an adult care setting. For advice on moving from child to adult services please click here: Transition Care – Child Services to Adult Services
At the bottom of this page you will find further links and downloads that will help you care for your child at home.
Ideally, planning to care for a child at home begins once it is established that the child, with the appropriate support, could be cared for in their own home. This initially requires the main care team, the family and a wide range of health care professionals working together to identify the extent of support services required for a child to be cared for at home. This consultation phase is key to beginning the process of planning for home care and begins the process of establishing a trusting relationship between the parents and the various care services, as the parents begin to transition to being the primary care givers. This initial stage can take a significant amount of time as a plan for caring at home is established.
Families have a number of support needs, educational, social, financial and emotional, during and after the transition to caring for a child with complex care needs at home. There are some very practical issues on which you as a parent or guardian can focus on, guided by your clinical care provider. This is not an exhaustive list but addressing each issue can enhance readiness for discharge and can form the basis of a safe and supportive transition.
Written by Prof Maria Brenner, University College Dublin
Children can be cared for in a variety of areas at end of life, on a children’s ward in hospital, a children’s hospice or often in the child’s own family home. Below is some information on how this transition to home may work in the Republic of Ireland.
The Clinical Nurse Co-ordinator (CNC) for Children with Life Limiting Conditions, along with other health professionals in a child’s care, become particularly important when their condition becomes unstable and/or when they are dying. At this time their physical, psychological and social needs may change or increase. They and their family may prefer the child’s care and treatment to be at home. Children who are receiving care at home may be under the governance and care of a specialist consultant, or paediatrician in a hospital, in partnership with the child’s GP. Due to the relatively small numbers of patients involved, there aren’t specialist paediatric palliative care teams available regionally, therefore community specialist palliative care teams (adult services) usually provide the end of life care at a local level, in partnership with the child’s existing paediatric and primary care teams. The level of input varies across the country. The Clinical Nurse Co-ordinator (CNC) has a pivotal role in accessing and coordinating these services alongside the other longer term supports the child has been accessing. Voluntary services play an important role in providing the care available. (Bee Wee). A common goal exists to enable an environment where hospital, community and primary healthcare providers are supported to provide a palliative care approach as part of their normal service provision. As noted in Ireland’s Palliative Care Model of Care, palliative care services enable patients to avoid inappropriate acute hospitalisation and remain safely and adequately cared for at home.
It is important to note that Home is not always the right place for the child or family to be as end of life approaches, many families chose to be in hospital (or Hospice) at this time, for many different reasons. This is OK if this is what you chose, your local Hospital (with Paediatric facilities) will always be open to you.
Each child with end of life need should have an identified core team of healthcare providers that includes a named paediatrician in the acute hospital closest to their home, palliative care provider, GP and aligned Clinical Nurse Coordinator. This core team is supported by a network of regional paediatricians with a special interest in palliative care for children or palliative care specialists.
When a child with a life limiting condition is at home and is relatively stable, their GP and primary care team continue to provide family centred medical care, strongly supported by their named paediatrician and the paediatric team. The child may be known to the Clinical Nurse Coordinator (CNC) in that area. Voluntary sector and contracted providers may be involved in assisting with hands-on care. This reflects the current arrangements and should remain the foundation. Where the child is at home and gradually deteriorating but not yet in the last weeks to days of life, they may benefit from a referral to specialist palliative care services for an assessment and to develop a planned holistic approach to their care. It is recognised that the earlier a child with life limiting condition whose health is beginning to deteriorate is referred to palliative care, the better their outcomes and the outcomes for their family members. This can occur alongside potentially curative treatments. Increased availability of consultants in paediatric palliative medicine at a national level and consultant paediatricians with an interest in palliative care at a regional level, is currently being implemented and they will provide additional support, advice and knowledge to GPs, paediatricians and consultants in adult palliative medicine who are making this assessment of the child. Allowing the CNCs to play a strong coordination role in every case.
An assessment should inform the holistic approach to be taken by all professionals involved in the care of the child and should be documented as clearly as possible and kept up to date. The Clinical Nurse Coordinator (CNC) plays a key role in liaising with the family and supporting the coordination of the various roles and responsibilities involved. They will often facilitate joint home visits to reduce the ‘stranger effect’ when new team members are being introduced to the child and family. In delivering holistic and family centred care to the child, the GP is supported by the child’s named paediatrician (for advice related to paediatric issues, e.g. feeding, management of underlying condition, care and treatment approaches) and the child’s named consultant in adult palliative medicine (for advice related to palliative care issues, e.g. symptom management and other palliative approaches, holistic care, support for child and family, expert communication). They may seek further advice from the paediatrician with an interest in palliative medicine or consultant in paediatric palliative medicine. Furthermore, the community palliative care team and other members of the primary care team may be involved. Voluntary sector and contracted providers often assist with hands-on care.
The care of a child with a life limiting condition, who is at home, may focus more on palliation as they begin to deteriorate, and it is recognised that the child now has an expected prognosis of days to short number of weeks. A multidisciplinary team meeting should be triggered by the GP, Clinical Nurse Coordinator (CNC), paediatrician, palliative care team or whoever recognises that the child’s condition is deteriorating. This may involve the child being brought to the paediatric unit for reassessment or a home visit may take place including the GP and/or paediatrician, Clinical Nurse Coordinator (CNC) and a member of the community specialist palliative care team. It is recognised that all professionals may not be available to be physically or virtually present for these meetings, however it is advised that their services should be represented as much as possible and pre and post meeting communication should include all parties. The outcome of the multi-disciplinary meeting is a detailed care plan for the day-to-day clinical management, out-of-hours, escalation and advance care needs of the child, with details of who needs to be involved when, including any other relevant information. This is written by the child’s paediatrician and agreed by all parties. The consultants in paediatric palliative medicine and regional consultant paediatricians with an interest in palliative medicine can provide additional advice and support. Voluntary sector and contracted providers may be involved in assisting with hands on care.
Written by Tyrone Horne, Clinical Nurse Co-ordinator (CNC) for Children with Life Limiting Conditions
You can view other available services by visiting our “Services” page here for ROI: https://palliativecarehubchildren.com/services/roi-services/
This service is based in Belfast in the Royal Belfast Hospital for Sick Children. They will help liaise with your community team (GP, Children’s Community Nurses and Community Paediatrician) to make sure there is a suitable plan for you child to go home. The plan will include how to manage any symptoms your child may have and outline who you need to call for support out of hours.
This service also has enough staff attached to it to support a “virtual” bed, meaning Northern Ireland Children’s Hospice can get some nursing support out to your home to assist with care. Depending on where you live the level of support may vary.
This service ensures that you can access responsive support and advice when you need it. They have 2 HUB Nurses who can:
You can contact NI Children’s Hospice HUB Service any weekday between 9am to 5pm (click here for more information). Your call will be triaged, and they will make sure that it is picked up by the correct professional to best meet the need.
The Hub team also run a 24/7 out of hour support line.
The Children’s Hospice operates throughout Northern Ireland providing supported short breaks and end of life care in the child’s own home. The service is provided by fully trained staff nurses and care assistants. Nursing support is provided by the Hospice at Home service. The Children’s Hospice at Home Service aims to provide:
Written by Grace Stewart, Northern Ireland Hospice
You can view other services available in NI by viewing our services page here: https://palliativecarehubchildren.com/services/ni-services/
