Dr Katherine Bristowe, Dr Steve Marshall and Dr Richard Harding explain the background to their longer article selected as Editor’s Choice in the September edition of Palliative Medicine.
Katherine and Richard are researchers at King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation; Steve is a social worker at King’s College Hospital NHS Foundation Trust, London, UK.
At the Cicely Saunders Institute, one of our four main streams of research is ‘Living and Dying in Society’. Research in this stream focuses on understanding how the needs and experiences of individuals from different communities may vary. This, in turn, can help us to adapt service delivery to meet their needs and reduce social exclusion.
Over recent years, there has been a raft of legislative change to support the rights of lesbian, gay, bisexual and/or trans* (LGBT) people. At the Cicely Saunders Institute, we commenced our research on the palliative and end-of-life care needs of the LGBT communities in 2012 when we completed a systematic review. This identified unmet palliative care needs within the LGBT communities and evidence of negative experiences. Even since then there have been changes in the law, most notably the legalisation of same-sex marriage in England, Scotland and Wales in 2014, and in the Republic of Ireland in 2015.
However, we also recognise that good palliative care identifies the unit of care as the patient and those close to them (including biological and chosen family). This care also extends beyond the care of the patient into bereavement. We therefore chose to undertake a second systematic review to understand the bereavement experiences of LGBT people whose partners have died.
One of the most striking findings from our systematic reviews, and our primary research (the ACCESSCare study (Advanced Cancer Care Equality Strategy for gender and Sexual minorities), forthcoming), is how common negative experiences are for LGBT people accessing health care, including in palliative care. Despite the changes in the law, society still needs to catch up. We know that people who are bereaved of their primary relationship (spouse/partner) experience physical and psychological impacts of their bereavement. However, for bereaved LGBT people, this can be heightened by the added layer of stress relating to how their relationship is acknowledged and responded to by healthcare professionals.
The 23 studies we identified revealed experiences of: lack of recognition of the depth of the relationship during care; overt exclusion of the partner around the time of death; and a lack of acknowledgement of their grief. We did some further analysis of the results from those studies and devised a new model (see below) to explain these experiences.
The acceptance/disclosure model of LGBT bereavement experiences
We found that the degree to which an individual feels able to disclose their relationship, and the extent to which that relationship is recognised and acknowledged by those delivering care to them, will shape the bereavement experience for that individual. For example, those who do not feel able to share the nature of their relationship with their healthcare team, and who are not identified as being the partner, may not receive the vital care and support they need in bereavement.
As a speciality, we need to find ways to reach those who may not feel able to share the depth of their relationship with the healthcare team. Whether through using less biologically focused tools to capture relationships, or finding ways to ask questions that don’t make assumptions about the person in front of you, we need to do this better.
We need to deliver palliative care for all and reduce social exclusion. We need to catch up.
Read more posts about improving end of life experiences and care needs for LGBT and/or trans* people on the EAPC Blog.
Read the full article in Palliative Medicine
This blog post relates to the longer article, ‘The bereavement experiences of lesbian, gay, bisexual and/or trans* (LGBT) people who have lost a partner: a systematic review, thematic synthesis and modelling of the literature’, Palliative Medicine 2016, Vol. 30(8) 730–744. First published on 4 March 2016 doi:10.1177/0269216316634601.
How to download previously published ‘Editor’s choice’ articles
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