Supporting LGBTIQ+ people access inclusive end of life care in hospital settings

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A guest blog post written by Hannah Morgan, National Palliative Care Coordinator, LGBTIQ+ Palliative Care Project, LGBTIQ+ Health Australia

LGBTIQ+ people accessing palliative or end of life care in Australia have a high level of anticipated fear around their care needs being respected and understood by health care professionals. Many LGBTIQ+ people worry that they will need to spend considerable time educating health care professionals on inclusive and appropriate care while simultaneously navigating a life-limiting illness.[1] These fears have often been informed by pervious adverse interactions with health care settings where individuals have been subject to discrimination, stigma and harm.

Research shows that people who are LGBTIQ+ approaching end of life have a clear idea of what good care is. Primarily good care includes care that recognises people as individuals with individual needs, and care that involves the inclusion of chosen support people or chosen family.[2] Chosen family is a term that refers to the person or group of people that someone sees as significant in their life. It may include none, all or some members of their family of origin.[3]

There are a range of steps that can be taken to increase the level of inclusive care in hospital settings.

An inclusive hospital environment

An inclusive hospital environment increases the quality of LGBTIQ+ patient care.[4]

An inclusive environment can be fostered through:

• policies and procedures that recognise LGBTIQ+ people’s human rights
• LGBTIQ+ content in diversity and anti-discrimination training
• LGBTIQ+ visibility in materials (written and images)
• explicit markers of inclusion such as rainbow lanyards and pronoun badges
• partnering and engaging with local LGBTIQ+ community groups for input and guidance on inclusive care.

LGBTIQ+ inclusivity training

LGBTIQ+ training on inclusive end of life care should include a focus on providers attitudes and should address:

• understanding of the history of LGBTIQ+ communities in relation to systemic and societal discrimination, including the harm that has been perpetuated against LGBTIQ+ people in healthcare contexts.
• healthcare provider discomfort and lack of experience with LGBTIQ+ patients and then the provision of structured support.[5]
• recognition of the diversity of LGBTIQ+ life journeys, history, experience, life-course perspectives and end of life experiences of LGBTIQ+ individuals.

Safe, appropriate patient communication

Communication that is inclusive of LGBTIQ+ experiences is an essential component that contributes to safe and inclusive care.

Best practice examples of this include:

• health care assessments that include appropriate questions about sexuality, gender and bodily diversity
• respect of a patients’ right to disclose or not disclose information about their gender, sexuality or body
• appropriate facilitation of opportunities for patients to self-disclose information about their gender, sexuality or body
• sensitivity about how healthcare providers request patients’ information, including using inclusive and gender-neutral language
• information, leaflets and intake/admission and consent forms that use LGBTIQ+-inclusive language
• privacy, confidentiality and safety should be paramount across all communications.

Palliative and end of life care services in hospital settings are positioned to provide people who are LGBTIQ+ with affirming, safe, inclusive care at a challenging and vulnerable time in their lives. For this to be realised, attention to both systemic and individual factors need to be addressed in a considered way which is informed by best practice, research evidence and engagement with LGBTIQ+ community-controlled organisations.

For more information on LGBTIQ+ inclusive care at end of life you can visit LGBTIQ+ Health Australia here www.lgbtiqhealth.org.au and explore the work we are doing as part of our National Palliative Care Project, funded by the Department of Health.

 

References

1. Kortes-Miller K, Boulé J, Wilson K, Stinchcombe A. Dying in Long-Term Care: Perspectives from Sexual and Gender Minority Older Adults about Their Fears and Hopes for End of Life. J Soc Work End Life Palliat Care. 2018 Apr-Sep;14(2-3):209-224. doi: 10.1080/15524256.2018.1487364. 
2. Marie Curie Cancer Care. (2017, 7 September). Hiding who I am: The reality of end-of-life care for LGBT people. Madam Curie Blog. https://www.mariecurie.org.uk/blog/ end-of-life-care-for-lgbt-people/163652
3. Acquaviva, K. D. (2017). LGBTQ-inclusive hospice and palliative care: A practical guide to transforming professional practice. Harrington Park Press.
4. Bristowe K, Hodson M, Wee B, Almack K, Johnson K, Daveson BA, Koffman J, McEnhill L, Harding R. Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med. 2018 Jan;32(1):23-35. doi: 10.1177/0269216317705102. 
5. Cloyes KG, Hull W, Davis A. Palliative and End-of-Life Care for Lesbian, Gay, Bisexual, and Transgender (LGBT) Cancer Patients and Their Caregivers. Semin Oncol Nurs. 2018 Feb;34(1):60-71. doi: 10.1016/j.soncn.2017.12.003.

 

 

Hannah Morgan, National Palliative Care Coordinator

LGBTIQ+ Palliative Care Project, LGBTIQ+ Health Australia