LGBT+ Inclusive Palliative & End-of-Life Care

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. 

In countries where inequality is legally or culturally sanctioned, LGBT+ people face barriers accessing basic healthcare and palliative care. Evidence demonstrates that LGBT people are at increased risk of certain life-limiting illnesses and life-threatening diseases, and at higher risk of mental health linked to discrimination. 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. 

The Task Force is chaired by Richard Harding, Professor of Palliative Care & Rehabilitation, King’s College London, UK and Katherine Bristowe, Lecturer, Kings College London, UK.

A legacy of institutional and historical barriers can also cause invisible stress for LGBT+ people. 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.

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.

Providing LGBT+ Inclusive Palliative & End-of-Life Care

These recommendations have been developed using resources collated by members of the EAPC Task Force.

LGBT+ is an acronym to include lesbian, gay, bisexual, and trans people, and anyone who considers themselves to have a minority sexual orientation, gender identity or gender history (the relationship between gender identity and sex assigned at birth).

The recommendations bring together evidence and examples of good practice suggested by members and utilised within our countries. This guidance was developed in English in collaboration with task force members from 15 countries. Member countries are responsible for translation and ensuring the guidance is culturally appropriate.

The legal context for LGBT+ inclusion will vary in each country, as well as any requirements from bodies governing health care provision. As such, attention should be given to how recommendations fit with local law and guidance. Special attention is needed for any recommendations that may conflict with local law.

You can download the full document here

Download the Swedish translation of the recommendations here.

Steering Committe

Katherine Bristowe

Dr. Katherine Bristowe

Chair - United Kingdom

King’s College London, Cicely Saunders Institute

Dr. Anna Siverskog

Co-chair - Sweden

Jönköping University

Debbie Braybrook

Dr. Debbie Braybrook

Coordinator - United Kingdom

King’s College London, Cicely Saunders Institute

Hannah Scott

Deputy cordinator - United Kingdom
King’s College London, Cicely Saunders Institute

Prof. Richard Harding

United Kingdom

King’s College London, Cicely Saunders Institute

Dr. Jane Bromseth

Norway

University of Oslo, Department of Interdisciplinary Studies of Health. FRI

Michael Connolly

Michael Connolly

Ireland

University College Dublin, School of Nursing Midwifery & Health Systems and Our Lady’s Hospice and Care Services

Axel Doll

Germany
University of Cologne, Medical Faculty, Center for Palliative Medicine

Dr. Guillaume Economos

France

University Hospital of Lyon

Dr. Heiko Gerlach

Germany

Freelancer

Dr. Patrícia Hilário

Portugal

University of Lisbon, Institute of Social Sciences

Natasha Pedersen

Norway
EAPC

Dr. Karin Pool

The Netherlands

Rode Kruis Ziekenhuis

Dr. Heiko Gerlach

Germany

Freelancer

Dr. Patrícia Hilário

Portugal

University of Lisbon, Institute of Social Sciences

Natasha Pedersen

Norway
EAPC

Members

Prof. Kathyrn Almack

United Kingdom

University of Hertfordshire, School of Health and Social Work

Max Appenroth

Germany

Charité Universitätsmedizin Berlin, Institute of Public Health

Anne Baumann

Anne Baumann

Germany

"Department of Palliative Medicine, Uniklinik Köln (University Hospital Cologne)"

Prof. Susan Cadwell

Canada
University of Waterloo, Renison University College
Carey Candrian

Carey Candrian

USA

University of Colorado, School of Medicine

Claude Chidiac

Lebanon

Lebanese Medical Association for Sexual Health

Paul Clift

United Kingdom

Independent Consultant

Clément Cormi

France
Université de technologie de Troyes

Prof. Lee-Ann Fenge

United Kingdom

Bournemouth University

Dr. Sean Hughes

United Kingdom

Lancaster University, Department of Health Research (retired July 2021)

Dr. Laoridi Héritier

France

University Hospital of Nîmes

Dr. Esther Janssen

Belgium
Az Vesalius Hospital

Dr. Roger Thay

France

Université de Paris Diderot, Groupe hospitalier Diaconesses Croix Saint Simon

Dr. Liadh Timmins

United Kingdom

Colombia University, New York, USA

Dr. Denisa Svobodova

Czech Republic

Centrum pro rozvoj paliativní péče, z.ú.

Dr. Donna Wakefield

United Kingdom
North tees & Hartlepool NHS Trust

Dr. Erica Zeni

Brazil

Academia Nacional de Cuidados Paliativos

Dr. Erica Johansson Afrexio

Sweden

Karolinska Institutet (guest - nursing student)

Dr. Beat Müller

Switzerland

Palliative Care, Luzerner Kantonsspital, 6000 Luzern 16

Billy Rosa

Dr. Billy Rosa

USA
Chief Research Fellow, Dept of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center
Coman Hennelly

Dr. Coman Hennelly

Ireland

"Irish Association for Palliative Care (IAPC) Royal College of Surgeons in Ireland (RCSI) Doctoral Student"

Dr. Max Kleijberg

Sweden

Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing

Kay Kistemaker

Kay Kistemaker

Netherlands

Amsterdam UMC, location VUmc

Theodor Pilou Kruse

Denmark
Sygehus Lillebælt

Ignacio Borque

Spain

SECPAL

Enric Martinez Vieites

Spain

Mutuam - deputy director of home palliative care teams

Michel Delbue - Luisoni

Switzerland

Palliative TI

Dimitrios Protogiros

Greece
Hellenic Ministry of Health

Prof. Daniel Sperling

Israel

Haifa University in Israel

photo Joanne Brennan

Joanne Brennan

Ireland
EAPC