Report: How to deliver personalised end of life care for LGBTQ+ patients (February 2022)

Report - 22 February 2022

Today, Healthwatch has published a report which looks at how to deliver personalised end of life care for LGBTQ+ patients. The results are from a Healthwatch review of published literature. We have worked with our NHS Trust to examine our findings.

This project builds on the foundations of two earlier reports from Healthwatch Brighton and Hove on end of life care, which were published in 2020 and 2021. 

As with our other reports, it is intended to support our local Trust – the University Hospitals Sussex NHS Foundation Trust - in developing a fully inclusive end of life strategy, including best practice.

This report has already stimulated a conversation with our hospital Trust about the needs of LGBTQ+ people who are at the end of their life, and they have agreed to conduct further work in this area, including a consideration of our recommendations.

“There’s growing awareness of the needs and difference experiences of LGB+ and Trans & Non-Binary people in End of Life care, particularly around Cancer. So, it’s really positive that Healthwatch will look to include reference to LGBTQ+ care.”

Nick Groves, LGBTQ+ Network Co-Convenor, June 2021

Key findings

This report is a compilation of more than 20 national and international literature which has examined some of the specific end of life support needs for LGBTQ+ people. Themes we identified are:

  1. There is no specific LGBTQ+ end of life guidance produced by University Hospitals Sussex
  2. Nationally, there is a lack of data about palliative LGBTQ+ experiences
  3. LGBTQ+ people face discrimination in healthcare settings
  4. Enhanced privacy rights exist to protect Trans people
  5. It is unclear if the spiritual needs of LGBTQ+ people are always met 
  6. LGBTQ+ people need support to express their needs and wishes

Healthwatch recommendations

1. We recommend that the Trust should develop and embed palliative guidelines specifically for LGBTQ+ patients within their service model and practices.

2. We recommend that the Trust should review its current policies and identify a core narrative around end of life care delivery for LGBTQ+ groups and use this as a building block for wider systematic change around inclusion and equity for all patients.

3. We recommend that the Trust design modules which educate staff about the specific concerns and needs of LGBTQ+ patients:

  • tackling the well-intentioned ‘we treat everyone the same’ approach to patient care which may not fully recognise diversity
  • supporting staff to develop inclusive and open communication skills
  • tackling any unconscious and conscious bias amongst staff
  • raising awareness around ‘next of kin’ and enabling effective conversations around these relationships.

4. We recommend that the Trust should review all patient forms to ensure these capture data on sexuality/orientation, personal preferences, and next of kin. The focus could initially be on admission and discharge forms to improve and support these important processes.

5.  We recommend that the Trust should continue to promote the principle of inclusivity by ensuring that patient materials include diverse images of LGBTQ+ people and/or symbols such as LGBTQ+ flags and promote the use of pronoun badges amongst staff.

6. We recommend that the Trust should work with local LGBTQ+ groups to understand more about the end of life care needs of LGBTQ+ individuals and create a LGBTQ+ working end of life palliative group.

7. We recommend that the Trust should promote the importance to LGBTQ+ patients of having an Advance Decision in place to help them to express their needs and preferences, including around end of life. This will also help staff.

The research findings extend beyond end of life care and are reflective of health equity issues more broadly. The results from this Healthwatch report can be used by the Trust to identify a core narrative around end of life care delivery for LGBTQ+ groups but also used as a building block for wider systematic change around inclusion and equity that UHS is exploring.

University Hospital Sussex NHS Foundation Trust

Downloads

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Impact from our report (March 2023)

In 2020/21, Healthwatch looked at End of Life care at our hospitals  (click here to read our last report). This led to a wider review of end of life care provided to LGBTQ+ patients and our follow-up report which is available here. We discussed our report (which are not based on local people’s views, but a review of national literature) with colleagues at University Hospitals Sussex Trust. They welcomed the content and in response, explored what patients were telling them and it was pleasing that in the last three years they had not received any complaints relating to care for LGBTQ+ patients. To not lose sight of the findings we presented, the Trust has proposed:

  • To re-share the report again at the End of Life Care Board
  • That some of the content is used as a training tool for colleagues such as medical examiners and others dealing with patients and their loved ones at end of life
  • To use this training to act as a trigger should anything emerge from their engagement so that this can be reported into the End of Life Care Board in the future.
  • Prospectively observe if any issues arise through the Medical Examiners Office which will then be raised at the Mortality Panel

It is great to see how research carried out by Healthwatch is welcomed by our Trust and used to monitor services and identify any potential concerns

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