End of life care

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 provide end of life care* to babies, children and young people aged 0-18 years.

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.

All of the Acorns team work together with the child and family to deliver holistic end of life care

“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.”

-Acorns staff nurse

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 extended family to be involved during end of life care
  • Compassionate extubation (removal of life support) at the hospice
  • 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
  • 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.

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.

“When Ella passed we found out how special Acorns really was. The facilities, support and help we received during that time was unbelievable. They thought of everything and made making arrangements so much easier whilst supporting us as well as our family and friends. Even now we are still very much included in the Acorns family and they will always be a part of our lives which is important to me as part of remembering Ella.”

-Kirsty, Ella’s mum

What are the benefits of end of life care?

  • 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
  • Support services help families deal with the loss of their child on both a practical and emotional basis

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