The term ‘end of life’ usually refers to the last year of life, although for some people this will be significantly shorter. The term palliative care is often used interchangeably with end of life care. However, palliative care largely relates to symptom management, rather than actual end of life care.
The RCN believes that end of life care is not just the responsibility of specialist nurses and teams, rather that everyone should be able to care for a loved one as they reach the end of their lives, including all nurses and health care support workers in all settings, the patient’s family as well as members of the community.
End of life care is not just the practical and technical delivery of care provided to the individual who is dying, but also refers to the support and information available both to them and the people who are important to them, e.g. bereavement support.
Due to an unacceptable variance in the availability of services and professional expertise available to patients, many people are experiencing poor care at a time when they and their families need it to be at its best. The RCN is committed to ensuring that nurses working with people who are dying are given the support they need to understand their role.
Josh Cawley died a distressing death supported by his family who fought for all of his short life to get the care he needed. Bounce Back Boy is a film that explores the life and the death of 23 year old Josh following catastrophic injuries inflicted by his birth parents. It explores how his, and his adoptive family's complex needs were inadequately identified, assessed and supported by health and social care professionals.
The original play was written by playwright Brian Daniels, in conjunction with Josh’s adoptive mother Lynn Cawley, who had to co-ordinate his care whilst fighting for the system to recognise his needs. Josh's needs were considered too 'complex' for the local hospice.
A question and answer session with Josh’s adoptive mother, Lynn follows directly on from the main film. She describes some of the things she would like to be done differently and the impact living with Josh had on her life and those of her immediate family.
The primary objectives of the film are to provoke discussion, and:
The RCN is working in partnership with Hospice UK and Skills for Care to develop associated learning and educational materials to support the film.
The making of the Bounce Back Boy film was supported by the RCN Foundation.
Essential guidance for staff involved in care after death, especially nurses working in the community and care homes. This guidance has been co-created and endorsed by the RCN.