The following guide is an excellent resource to guide communication around such sensitive topics and also provide a set of standards and goals for good quality care:

Caring for a child at end of life - a guide for professionals on the care of children and young people (togetherforshortlives.org.uk)

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 of 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 may mean 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:

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

These conversations can be challenging; there are a variety of resources that can help support Healthcare professionals:

• 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 requiring end of life care: our position on Universal Principles for Advanced Care Planning
• CYPACP Children and Young Peoples Advance Care Planning
• Advance Care Plan (with ReSPECT) – CYPACP

Young Lives vs Cancer

End of life and bereavement | Young Lives vs Cancer Publications

• When your child won’t get better
• Practical tasks after your child has died
• In our own words (Parents experiences)
• A young person's guide to dealing with the loss of a brother or sister

Child bereavement UK

Books and resources | Child Bereavement UK

When a child dies (aimed at parents)

• GriefWorks app
• When Words are not Enough: Creative Responses to Grief
• Don't Let Them Tell You How to Grieve: Lines to let you know you are not alone

When a sibling dies (for Children up to the age of 11)

• Always my twin
• Andrew’s Rainbow
• Benny’s Hat
• I miss my sister
• My brother has died
• My sister has died
• Remembering
• When someone special dies - for under 7s          
• When someone special dies - for ages 7 to 11

Grief and loss for 11-18yr

• Sometimes Life Sucks: When someone you love dies      
• A teenage guide to coping when someone dies (fold out A3 guide)
• When someone special dies - for young people
• You will be OK

CCLG

When your child dies (cclg.org.uk)

For parents:

• Facing the death of your child
• The last few days of your child’s life
• What to do after your child has cancer
• How we grieve
• Bereavement sources of help and support

Winstons Wish

Resources, Publications & Support Information | Winston's Wish (winstonswish.org)

• Out of the Blue (supporting teenagers)
• You just don’t understand (teenagers)
• As big as it gets (younger siblings)
• Muddles, Puddles and Sunshine (younger children)
• A Child’s grief

Communication around the death of a peer and supporting TYAs with this can be very difficult and it is important that an individual approach is taken that acknowledges the existing support mechanisms around a young person and their ability to tolerate/cope with such news. It is also important to ensure that local Trust governance processes are checked prior to any disclosure around the death of a young person to other TYAs.

Best practice is advised that any disclosure should only be in response to being directly asked by a young person and not to initiate such conversations, as the act of a young person asking is often an indicator that they feel ready to assimilate such news. Having a space within a unit or outside that can act as a place of remembrance can be useful to enable young people to have a space that they can reflect and express their grief. 

The TYAC best practice guide on bereavement provides some guidance on this and additional resources can be accessed at the following:

• When another friend with cancer dies - Young Lives vs Cancer
• End of life care and bereavement: how our nurses support young people and their families | Teenage Cancer Trust
• Childhood Bereavement Network
• Home - Cruse Bereavement Support

Yes: service specifications have now been released around palliative and end of life care for both children and young people (Nov 2021) and adults (May 2022) which provide a useful reference point to benchmark against.

• Specialist Level Palliative and End of Life Care Services (PEoLC) (Adults)
• Children’s and Young People’s Palliative and End of Life Care

Online Resources For adolescents coping with grief

UK

• NHS: Bereavement and Young People
• At a loss
• The Good Grief Trust
• Hope again
• Cruse Bereavement support
• Young minds
• Winston’s Wish

Ireland

• CCLG: Facing the death of your child and bereavement
• The Irish Childhood Bereavement: Adolescents and Grief
• St Francis Hospice: Finding Your Way Through Grief: For teenagers and young adults
• Tusla and Barnardos:
• Barnardos: Helping teenagers understand death:
• Irish Hospice Foundation
• Irish Association for Counselling and Psychotherapy
• Childhood Bereavement Network
• Sue Ryder
• Marie Curie

For parents, friends and family

• Anam Cara
• A Little Lifetime
• TYAC Good Practice Guide: Bereavement support for young people experiencing the death of peers