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End of life care

End of life care

Dying is the one certain thing in life – we will all die. Some people unexpectedly as a result of illness or accident, and some gradually from a chronic illness or frailty. The RCN believes that no matter what the reason, everyone has the right to be cared for with dignity and respect as they approach the end of their lives.

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.

Bounce Back Boy

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.

Film objectives

The primary objectives of the film are to provoke discussion, and:

  • raise awareness of the multiple challenges that can arise when a young person with complex needs is dying
  • promote understanding of the human impact of inadequate support for individuals and those that love them at the end of life
  • highlight the importance of tailoring care to individual and family needs at the end of life
  • improve the quality and experience of palliative and end of life care for young adults and people with learning difficulties.

The RCN is working in partnership with Hospice UK and Skills for Care to develop associated learning and educational materials to support the film.

Getting it right every time

Explore two online resources from the RCN looking at the fundamentals of nursing care at the end of life and learning around the delivery of nutrition and hydration at the end of life.