Advanced Care Planning for Teenagers and Young Adult Cancer Patients

Advanced Care Planning is a voluntary process whereby healthcare professionals work in collaboration with the young person and their family/carers to set out the actions required in palliation and end of life care. It is person centred and should identify the young person’s preferences and priorities for future care.

In March 2022, NHS England set out the following universal principles for Advanced Care Planning:

Universal Principles for Advance Care Planning

1. The person is central to developing and agreeing their advance care plan including deciding who else should be involved in the process.
2. The person has personalised conversations about their future care focused on what matters to them and their needs.
3. The person agrees the outcomes of their advance care planning conversation through a shared decision-making process in partnership with relevant professionals.
4. The person has a shareable advance care plan which records what matters to them, and their preferences and decisions about future care and treatment.
5. The person has the opportunity, and is encouraged, to review and revise their advance care plan.
6. Anyone involved in advance care planning is able to speak up if they feel that these universal principles are not being followed.

Although these principles apply to all young people, they require adaption to meet the specific needs of the person. These needs will vary significantly within the teenage and young adult group depending on a patients age, maturity and circumstance. There are also unique needs within this patient population to consider, for example the rarity of end-of-life care in young people The young person and their family/carers may have limited or no peer experience to support them leading to feelings of isolation. Adaptions need to be made for each person, their condition, and circumstances.

The discussions around ACPs may include the following outputs:

1. Advanced Statement – patients’ wishes, goals and priorities this may include nomination of a spokesperson
2. Lasting Power of Attorney
3. Advanced decision to refuse treatment
4. Context Specific recommendations, such as Resus status, Treatment escalation plans, emergency care and Ceilings of Care.

Resources

• NHS e-LfH (E-learning for Health) End of Life Care Advanced Care Planning – E-learning to add implementing ACP including support for professionals to guide conversations (please note, a NHS log in is needed to access this resource)
• Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) - Resuscitation Council UK
• Department of Social Care -Universal Principles for Advanced Care Planning (ACPs) - March 2022
• Together for Short Lives - Advance care planning for children and young people who need palliative care: our position on the new universal principles in England
• CYPACP Children and Young Peoples Advance Care Planning