Palliative and end of life care services for teenagers and young adults with cancer

The experiences of support and care for this age group and their families are often poor and vary widely throughout the UK. It is, however, vital that teenagers and young adults receive a service that is tailored to meet their specific needs.

Teenage Cancer Trust commissioned an evaluation to establish the level of current palliative and end of life care provision for teenagers and young adults with cancer in our Units and understand how this relates to the wider care setting. The evaluation also aimed to develop a guide for good practice based on the experience of those delivering or arranging palliative and end of life care in Teenage Cancer Trust Units.

Key findings

Practice across the Units

  • The policies currently in operation vary widely from Unit to Unit
  • A TYA End of Life Care Pathway could act as the basis for more consistent policy and practice
  • Such a document would need to be adaptable to local conditions but would still provide a framework for good practice
  • Links with the palliative care team are important and should be established at an early stage
  • A young person should be able to choose the unit as the place to die

The challenges of supporting teenagers and young adults at the end of their lives

  • Transition problems from hospital to community-based care
  • Lack of specialist paediatric palliative care services
  • Lack of agreement between staff about allowing teenagers and young adults to die on the Unit
  • The need to establish better communications between Principle Treatment Centres and community-based services
  • Insufficient teenage and young adult specific hospice care Gap in services for 16-18 year olds
  • The range of services may result in lack of clarity about the ‘best’ option

Training and resource needs

  • An age-specific end of life care pathway
  • Training in pain management and control for teenagers and young adults
  • A specialist in teenage and young adult palliative and end of life care accessible at all times
  • Advanced age-appropriate communication skills
  • Pre-bereavement and bereavement support training
  • Counselling training for staff where appropriate
  • Emotional support for staff
  • Training on how to maintain appropriate boundaries
  • Reciprocal training opportunities for hospital palliative care clinicians and hospice staff

Examples of best practice

  • Listening to what TYAs and their families want and need at the end of their lives
  • Being flexible and adaptive within a set of guiding principles
  • Commitment to providing care for teenagers and young adults in the place where they want to die
  • Building strong links with other services both inside and outside the hospital
  • Bringing SPC services in at an early stage
  • Recognising families’ possible continuing need for contact and support after bereavement

Recommendations

  • A dedicated end of life care pathway for teenagers and young adults with cancer is needed as a framework for use across all Teenage Cancer Trust Units though it must be flexible enough to accommodate local conditions.
  • There is a need for consistency both within and between Units in terms of their policy on end of life care – again allowing for local conditions A specialist in teenage and young adult palliative and end of life care needs to be accessible at all times
  • Strong communication needs to be established between Teenage Cancer Trust Units and other care settings
  • The problem of community based care for 16 -18 year olds needs to be addressed
  • Additional training and resources are needed to support staff who are more used to the treatment of teenagers and young adults than to their end of life care
  • The ongoing needs of bereaved families need to be considered and addressed Staff training for pre-bereavement and bereavement support, communications etc
  • Records of preferred place of death and actual place of death for each patient who dies should be collected from Units annually

Find out more

A Teenage Cancer Trust research project conducted by Dr Anne Grinyer and Zephyrine Barbarachild, School of Health and Medicine, Lancaster University.

Funded by the Department of Health April 2011.

For a full copy of the report please contact:

The Service Development Team

Tel: 020 7612 0370
[email protected]