End of life care for children
Respectful and compassionate care for a child or young person and their family members at the end of life, ensures their physical, psychological, social and spiritual needs are met. At Acorns we provides end of life care* to babies, children and young people aged 0–18 years.
*End of life (EOL) care for children is offered when a judgement is made that the end of life is likely to be soon. It may be the judgement of the health/social care professional or team responsible for the care of the patient, but it is often the child/young person or family who first recognises its beginning.
Every referral for end of life care is accepted with a specialist team ready to respond according to the needs and wishes of the family and child.
“At the end of life we try to facilitate whatever families want whether it’s a walk around the gardens, a swim, or peaceful quiet time together. It’s important for the family to build up happy memories, so the experience isn’t wholly negative and there are positive things they can take away” - Rob, Acorns staff nurse
End of life care team
The end of life care team includes:
- A medical director who is an experienced consultant pediatrician
- A team of GPs who make daily visits to the hospice and are on call 24/7
- Registered children’s nurses (including qualified nurse prescribers)
- Health care assistants (HCAs)
- Family team workers
- Sibling team workers
What does end of life care encompass?
End of life care encompasses all of the following:
- Understanding a family’s and, where appropriate, a child or young person’s wishes in advance
- Access to an experienced and qualified multi-disciplinary team of professionals
- Development and delivery of individual care plans to include pain management and symptom control
- Space and facilities to allow for wider support networks to be involved during end-of-life care
- Compassionate extubation (removal of life support) at the hospice
- Nurse-led care to manage personal needs and physical symptoms such as pain, sickness, tiredness or loss of appetite
- Psychological care and emotional support for the child and family to cope with the complex feelings experienced around death and bereavement
- Special facilities where a child can stay after their death until the funeral
- On-site accommodation to allow a family to stay with their child, before and after death
- Spiritual care addressing spiritual or religious needs of children and their families
- Practical advice and support with funeral arrangements, registering a child’s death, liaising with other agencies and ensuring other family members are informed
- Pre and post-bereavement support
- Therapeutic support groups for siblings, parents and grandparents
- Support and encouragement of ‘memory making’ – experiences, photographs, etc
- Inclusion in memorial events
Support is flexible according to each individual child and family’s circumstances, wishes and needs and will be provided alongside other professionals, whether a child dies at home, in hospital or the hospice.
Each hospice has a temperature controlled special bedroom where a child or young person can stay after their death so they can be cared for and visited by their family before their funeral.
A permanent memorial garden at each hospice, with the option to place a stone engraved with their child’s name; provides a place of reflection and refuge for families to visit whenever they wish.
“Louis was born in October 2008. When he was three months old he stopped breathing and was transferred to Birmingham Children’s Hospital where he stayed for the next nine months. He would stop breathing up to 12 times a day. We took Louis home and continued to manage his problems breathing. Acorns were brilliant and were even with us when we had to make the decision to switch off Louis’ life support machine. He died when he as just 15 months old and was taken to the special bedroom at the hospice. Our Acorns community team worker explained what would happen and how we would feel. It was a horrible time, but it was a wonderful comfort to have the support. We asked Acorns to organise the reading at the crematorium and they turned a terrible situation into a nice occasion. Our world was turned upside down when we lost Louis, but it was good to know we could rely on Acorns.” Katy – parent.
What are the benefits of end of life care?
The benefits of end of life care are:
- Advance care planning helps parents and the wider family prepare for how to cope with a forthcoming death, making decisions that can then be planned and giving an element of control
- Parents are offered the option to spend time with their child in a homely non-clinical environment – they are given the time to be parents and a family
- Non-hospice services help families deal with the loss of their child on both a practical and emotional basis
- Staff work closely with families to create positive opportunities