Dr Richard Harding, the Cicely Saunders Institute for Palliative Care, King’s College London, concludes our short series that discusses how we can improve end of life experiences and care needs for people in minority communities.
Hospice and palliative care services have identified their need to better serve the community according to need – which has led to a focus on social exclusion. The history of hospice care for lesbian and gay people is an uncomfortable one – the lack of the hospice movement’s engagement with the HIV epidemic led to parallel hospice services dedicated to gay men, injecting drug users and immigrant African communities who were already experiencing unbearable stigma. A review that modelled the evidence on barriers to palliative care 1 identified the literature on sexuality and hospice and healthcare use. It identified studies that reported: gay/bisexual men expressed concern at the possibility of a hostile response to their identity by Church-affiliated providers of hospice care; patients’ sexuality predicted nurses’ willingness to care for AIDS patients; assistant nurse students were more likely than other nursing staff to wish to refrain from nursing gay men with HIV.
Our systematic review 2 of palliative and end-of-life care for lesbian, gay, bisexual, and trans*people (LGBT) found epidemiological evidence that they may have greater needs but poorer access. The small amount of available evidence originated mainly from the USA.
The guiding principles of palliative and end-of-life care are good communication and person-centredness. It is hard to imagine a more central aspect of a person than their sexual identity and significant relationships. Facing the end of life and feeling unable to share these aspects of personhood, or not having a life partner respected, are experiences something few of us would want to face.
ACCESSCare (Advanced Cancer Care Equality Strategy for gender and Sexual minorities) is a study to improve palliative and end-of-life care for LGBT people funded by Marie Curie. Led from the Cicely Saunders Institute at King’s College London, its strategy aims to both increase the demand for appropriate care from LGBT people and their carers, and improve the supply of care from clinicians. It is an original collaboration between King’s and Health Equality Rights Organisation, who bring unique skills in LGBT community health, community leadership and engagement, and social media strategies.
ACCESScare is currently actively recruiting LGBT people facing the later stages of a progressive condition, their carers and bereaved carers. The data they give us will inform two outputs. Firstly, we will use it to inform small media and online resources to help LGBT access and use the care they need. Second, we will use the data and the new resources to develop training resources to be delivered within existing training courses for clinicians.
The response to ACCESScare has been overwhelmingly positive from LGBT community organisations, media and individuals. Likewise, from hospice and palliative care staff and services. This is testament to society’s maturation with respect to two historical taboos: sex and death.
References and resources
1. Harding R, Easterbrook P, Higginson I, Karus D, Raveis V, Marconi K. Access and equity in HIV/AIDS palliative care: a review of the evidence and responses. Palliative Medicine. 2005;19(3):251-8.
2. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012 May; 15 (5): 602-11. doi: 10. 1089/jpm.2011.0279. Epub 2012 Mar 8.
View more information about the ACCESScare study.