Advance care planning

Advance care planning is a way to think about and discuss personal wishes for future care and the end of life. Planning ahead ensures that if a person is unable to make their own decisions, health care professionals understand what is important to them and reassurance that the right decisions will be made. An advance care plan (ACP) is not a legally binding document and can be amended at any time. It includes how people would like to be cared for at the end of life and what health care professionals should know about them.

Advance care planning: further learning and resources

There are several documents, policies and resources that can support your learning and increase knowledge in advance care planning.

e-ELCA

Health and social care professionals can access the End-of-life-care for all e-ELCA programme that contains free e-learning modules around palliative and end of life care.

e-Elca https://www.e-lfh.org.uk/programmes/end-of-life-care/

Real talk https://www.realtalktraining.co.uk/about

Sage & Thyme http://www.sageandthymetraining.org.uk/

NICE guidelines

https://www.nice.org.uk/about/nice-communities/social-care/quick-guides/advance-care-planning

Gold Standards Framework (GSF)

The Gold Standards Framework is a model for a planned system of care that involves three overarching steps; identify, assess, and plan. Using the Gold Standards Framework enables good practice and better coordination of services between healthcare professionals. It is available to all people in the last years of life and aims to provide a gold standard level of care, prevent unplanned hospital admissions, and enable people to live well until they die.

ReSPECT https://www.resus.org.uk/respect

Mental Capacity Act https://www.legislation.gov.uk/ukpga/2005/9/contents

Communication skills

Excellent communication skills are a key component to advance care planning. Staff should be both confident and competent in talking about end-of-life matters and having these valuable meaningful conversations at the right time. Staff can speak with palliative care teams or contact your local hospice to enquire if they provide specific workshops or training. There are also national programmes that can provide training to support for health and social care professionals to enhance and develop communication skills including Real Talk and Sage and Thyme.

Accessible information

Advance care plan templates may vary dependant on locality. Many organisations have adapted documents into easy read to use with people with learning disabilities, in care homes, hospitals, hospices and other community settings. We have included examples of these to use when a person requires accessible information. Remember, easy read is not suitable for everyone, advance care planning takes places over a series of conversations so the emphasis should be focused on effective communication rather than merely the document itself.

http://www.pcpld.org/wp-content/uploads/when_i_die_2_0.pdf

Films, books, and webinars

No Barriers Here is an approach that focuses on advance care planning for people who experience inequalities accessing palliative and end of life care. The initial programme was co-produced with people with learning disabilities, using art-based methods for advance care planning conversations and is now being used with other communities.

Dying Matters

Dying Matters is a campaign and movement that aims to help people talk about death, dying and bereavement. The film ‘We are living well but dying matters,’ written and directed by CHANGE and produced by Dying Matters, highlights how best to include people with learning disabilities in conversations about death and dying and includes people with learning disabilities sharing their wishes. https://youtu.be/gJCzKLEx6Mw (show video thumbnail)

PCPLD Network webinar- Involving people with intellectual disabilities in end of life decision making