Pre and post bereavement support: Exploring barriers to 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 Pre and Post Bereavement Support.

The research involved interviews and focus groups conducted with staff members and service users in hospices across Walsall, Wolverhampton and Staffordshire. The participating hospices in this data collection were Compton Hospice, Donna Louise Trust, Acorns Children’s Hospice and St Giles Hospice. The research also included extensive literature review.

The aim of the research was to answer the following questions:

1) What is pre and post bereavement support?

2) How is pre and post bereavement support delivered nationally and locally?

3) What are the different types of bereavement support available currently?

4) How does bereavement support fit in (if at all) with Advance Care Planning (ACP)?

5) What are the barriers to bereavement support being incorporated into a consistent approach to EoLC?

The key findings of the report are as follows:

- Bereavement support has proven to be valuable to those suffering with grief.

- Locally in Staffordshire, Walsall and Wolverhampton, service user and hospice staff who work in bereavement support agree that the services are able to deliver good care though they question whether this is the case nationally.

- It’s difficult for people to access bereavement support outside of hospices e.g. pre-bereavement support is only available through hospices. Therefore people who do not go through hospices for their EoLC are isolated and commissioners should identify ways to ensure bereavement support reaches these people.

- The option of receiving bereavement support should be offered as part of a patient’s EoLC plan regardless of where they choose to receive their care.

- For service users, the barriers to consistently incorporating bereavement support into EoLC include: insufficient tailoring of support, support being received too late, services not coming to the patient/families, lack of awareness of types of support available.

- For staff, the barriers to consistently incorporating bereavement support into EoLC include: reliance on volunteer counsellors (trained professionals but not paid), late referrals, difficulty in providing services outside of hospices, social barriers around discussing death and grief, lack of funding.

The report makes three recommendations:

1) Bereavement support should be included in Advance Care Planning.

2) Members of the public should be included in bereavement support – this could be through drop in sessions, tying in charities and private counsellors to district nurses/hospitals for referrals/self-referrals.

3) The skills of bereavement counsellors and the value of the service they provide should be recognised. Funding should be diverted from NHS provision to the VCS sector that can provide this support more cost-effectively, whilst giving greater recognition and value to the role.