Improving palliative and end of life care for LGBT+ people

Background

Protection against discrimination based on sexual orientation, gender identity and/or gender history is widely variable across the world and attention is required to get this right for the significant populations who identify as LGBT+. Research in some countries has shown that even where such protections are written in law, lesbian, gay, bisexual and/or trans (LGBT) people may not receive the palliative and end of life care they need from health and social care professionals 1, 2. In countries where inequality is legally or culturally sanctioned, LGBT+ people face barriers accessing basic healthcare and palliative care 3, 4. Evidence demonstrates that LGBT people are at increased risk of certain life-limiting illnesses and life-threatening diseases 5-7, and at higher risk of mental health linked to discrimination 8. It is therefore important to ensure that health and social care is inclusive. However, empirical studies led by academics at the Cicely Saunders Institute, King’s College London and University of Hertfordshire, found that in the context of advanced illness LGBT+ people reported multiple barriers to accessing care, at service level and during interactions with health and social care professionals. A legacy of institutional and historical barriers can also cause invisible stress for LGBT+ people 9,10. A systematic review involving the same research team found that LGBT people may face additional stressors during bereavement, such as failure of others in acknowledging their significant relationships, homophobia, and additional legal and financial barriers 11.

Inclusive, non-discriminatory care is vital for all, and attention is required to get this right for the significant populations who identify as LGBT+. This Task Force will begin seeking to respond to these shortcomings, in order to improve palliative and end of life care for LGBT+ people experiencing life-limiting and advanced illness, and the support provided for their partners and those close to them.

Aims

  • Develop an international network for professionals interested in improving palliative and end of life care for LGBT+ people
  • Identify examples of best practice internationally
  • Develop evidence-based guidance on LGBT+ palliative care, incorporating knowledge from all research projects to date
  • Sharing of the evidence based resource for local translation into culturally appropriate resources, and dissemination

Richard Harding

Chair

Herbert Dunhill Professor of Palliative Care & Rehabilitation, KCL, UK

Katherine Bristowe

Co-Chair

The Herbert Dunhill Lecturer, KCL, UK

Debbie Braybrook

Task Force Coordinator

Research Associate, KCL, UK

Email the task force

Steering Committee

  • Debbie Braybrook, UK
  • Janne Bromseth, Norway
  • Michael Connolly, Republic of Ireland
  • Axel Doll, Germany
  • Guillaume Economos, France
  • Heiko Gerlach, Germany
  • Ana Patrícia Hilário, Portugal
  • Natasha Pedersen, Norway – EAPC Board link
  • Karin Pool, Netherlands
  • Anna Siverskog, Sweden

Members

  • Kathyrn Almack, UK
  • Max Appenroth, Germany
  • Anne Baumann, Germany
  • Susan Cadell, Canada
  • Carey Candrian, USA
  • Claude Chidiac, Lebanon
  • Paul Clift, UK
  • Clément Cormi, France
  • Lee-Ann Fenge, UK
  • Sean Hughes, UK
  • Laoridi Héritier, France
  • Esther Janssen, Belgium
  • Roger Thay, France
  • Liadh Timmins, USA
  • Steven Vanderstichelen, Belgium
  • Donna Wakefield, UK
  • Erica Zeni, Brazil

Timelines

May 2019 (EAPC, Berlin): Pre-launch EAPC Open Session on ‘Improving care for LGBT+ people facing serious illness or bereavement’, to gauge interest

Dec 2019: Launch of Task Force on ‘Improving palliative and end of life care for LGBT people’

Feb 2020: Identification of country leads, to progress Task Force aims

May 2020: Task Force meeting at EAPC World Research Congress, Palermo

Jul 2020: Identification of best practice across represented countries. We will explore the use of a survey for this purpose.

Jan 2021: Collection of best practice information from represented countries, to inform evidence based guidance focussed on improving palliative and end of life care for LGBT+ people

Sep 2021: Development of abovementioned evidence based guidance, incorporating knowledge from best practice examples and research projects to date, for distribution in relevant countries

Nov 2021: Distribution of the evidence based guidance to countries in Task Force, for translation

May 2022: Local translation of guidance completed.

Aug 2022: Preparation of White Paper to explain why implementing the guidance would be beneficial. Country-specific details to be added by local partners.

Nov 2022: Dissemination of local translations of the evidence based guidance by local partners, along with accompanying White Paper.

Relevant publications

  1. Harding, R., Epiphaniou, E., & Chidgey-Clark, J. (2012). Needs, Experiences, and Preferences of Sexual Minorities for End-of-Life Care and Palliative Care: A Systematic Review. Journal of Palliative Medicine, 15(5), 602-611. doi:10.1089/jpm.2011.0279
  2. Care Quality Commission (2016). A different ending: Addressing inequalities in end of life care. Retrieved from https://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_OVERVIEW_FINAL_3.pdf
  3. Hunt, J., Bristowe, K., Chidyamatare, S., & Harding, R. (2017). ‘They will be afraid to touch you’: LGBTI people and sex workers’ experiences of accessing healthcare in Zimbabwe—an in-depth qualitative study. BMJ Global Health, 2(2), e000168. doi:10.1136/bmjgh-2016-000168
  4. Hunt, J., Bristowe, K., Chidyamatare, S., & Harding, R. (2019). ‘So isolation comes in, discrimination and you find many people dying quietly without any family support’: Accessing palliative care for key populations – an in-depth qualitative study. Palliative Medicine, (online first), 0269216319835398. doi:10.1177/026921631983539
  5. Cochran S, Bjorkenstam C and Mays V. (2016) Sexual orientation and all-cause mortality among US adults aged 18 to 59 years, 2001-2011. Am J Public Health; 106: 918– 920.
  6. Mayer K, Bradford J, Makadon H, et al. (2008) Sexual and gender minority health: what we know and what needs to be done. Am J Public Health; 98: 989–995.
  7. McCabe S, Hughes T, Bostwick W, et al. (2009) Sexual orientation, substance use behaviors and substance dependence in the United States. Addiction; 104: 1333–1345.
  8. Chakraborty A, McManus S, Brugha T, et al. (2011) Mental health of the non-heterosexual population of England. Br J Psychiatry; 198: 143–148.
  9. Bristowe, K., Hodson, M., Wee, B., Almack, K., Johnson, K., Daveson, B. A., . . . Harding, R. (2018). Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med, 32(1), 23-35. doi:10.1177/0269216317705102
  10. Almack, K (2018) ‘I Didn’t Come Out to Go Back in the Closet’: Ageing and end of life care for older LGBT people. In King, A., Almack, K., Suen T-Y and Westwood, S (2018) Older Lesbian, Gay, Bisexual and Trans People: Minding the Knowledge Gaps. London: Routledge, 158-171
  11. Bristowe, K., Marshall, S., & Harding, R. (2016). The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature. Palliat Med, 30(8), 730-744. doi:10.1177/0269216316634601