Advance care planning: Exploring the barriers to a universal approach to end of life care

Healthwatch Staffordshire undertook a project to look into End of Life Care (EoLC) during 2016-17. This was identified as a priority area of focus following a public consultation and was also informed by local intelligence which indicated there were discrepancies in the way EoLC was provided across the County and West Midlands region.

The purpose of the project was to explore the barriers to a consistent, holistic approach to EoLC across Staffordshire, Walsall and Wolverhampton. Three primary areas to research were identified: Advance Care Planning (ACP), Workforce Development and Pre and Post Bereavement Support. This report focuses on Advance Care Planning.

The aim of the report is to:

1) Explore what ACP is

2) Identify the trigger points for having an advance care plan in place

3) Identify local and national best practice

4) Identify the barriers to achieving best practice in Staffordshire, Walsall and Wolverhampton

5) Make recommendations to mitigate these barriers.

The report was compiled using research and discussion from a clinical reference group composed of professionals with relevant experience of Advance Care Planning. Several organisations provided input into the research: Healthwatch Wolverhampton, Healthwatch Walsall, St Giles Hospice, Douglas Macmillan Hospice and University Hospitals of North Midlands (UHNM), Donna Louise Hospice and the Alzheimer’s Society.

The key findings of the report include the following:

- ACP is a process that allows an individual to record their wishes and preferences about their health and care for the future (e.g. if they want to refuse certain treatments, where they would prefer to die, etc.) in case there comes a time when they cannot make decisions for themselves. It can help individuals feel more secure and confident about decisions made about their future health, especially when issues with mental capacity at end of life are concerned.

- The benefits of ACP include: improved patient experience, less anxiety and stress for family after death, reduced hospital admissions if patient prefers to die at home and arrangements are made in advance. The benefits of having an ACP in place have been documented widely, but the point at which ACP is currently triggered is reported as being too late by EoL professionals. The ACP’s position in the EoL pathway is not ideal, and pulling it out of EoL and into the ‘every day’ public domain can only benefit more people.

- In order to move ACP into the every day discussion, there needs to be significant social and cultural shifts that will be difficult to overcome due to the lack of awareness amongst members of the public. This ties in with the fear of talking about death and the lack of interest in ACP, which creates further barriers for quality ACP practice.

- ACP also has no nationally agreed model for adults, making it difficult to have consistency across the

various sectors. Locally, the principles of ACP are broadly the same throughout the region but how it is implemented varies significantly, with many different documents in use.

- Commissioning barriers such as the lack of joined up systems that allow for effective information flow through the chain and the bureaucracy of how ACP is expected to be conducted, makes it difficult for services to provide quality care. Equally, documentation issues, lack of follow-up of ACP as well as staff’s lack of confidence and experience about engaging with ACP discussions cause problems within services.

The report makes 7 recommendations separated between commissioners, service providers and the public:

1) Shared online systems should be utilised

2) A locally agreed ACP framework should be developed

3) Providers should include ACP as part of their EoLC strategy

4) Advance Care Plans should be made available to patients online and in hard copy form

5) Providers should support staff training in ACP

6) Volunteers and/or paid non-medical facilitators should be trained to carry out ACP discussions with patients and families

7) Awareness of ACP should be raised amongst the general public and outside of EoLC