Palliative care in Australia needs to respect and meet the needs of many diverse communities, including LGBTIQ+ people who still face discrimination and ignorance at the end of their lives, the recent Oceanic Palliative Care Conference 2021 heard.
Croakey journalist Linda Doherty writes below about the findings of three research projects on what LGBTIQ+ people fear and want from palliative care, which were presented to a conference session on diversity in care.
See also below for Twitter coverage of additional sessions on diverse communities, including the findings to date of a two-year research project working with Aboriginal and Arabic, Hindi and Mandarin speaking groups in western Sydney and a case study on end of life care and issues for a Melbourne asylum seeker.
Linda Doherty writes:
Forty years after the HIV/AIDS epidemic brought death to the doorstep of LGBTIQ+ communities, palliative care services today still discriminate against patients’ family of choice and continue to preference their biological families.
“Our family structures are inherently different,” said Joel Murray, Manager of Community Health Program Delivery for ACON, New South Wales’ leading LGBTIQ+ health organisation.
“What’s really important to highlight is that for our communities people are more likely to involve their family of choice rather than their family of origin [in palliative care].”
Murray presented findings from a recent analysis of LGBTIQ+ palliative care needs, barriers and enablers to the recent Oceanic Palliative Care Conference 2021 that will inform an information toolkit to be released this month.
The research was funded by NSW Health and involved a partnership of ACON, Carers NSW, Palliative Care NSW, Positive Life NSW, and Seniors Rights Service.
The ACON research findings were consistent with two other research projects outlined at the conference last month, which revealed high rates of discrimination or “anticipatory fear” of discrimination that limited access to palliative care for people in the LGBTIQ+ community due to the experiences of partners, friends and families, dating back to the HIV/AIDS epidemic.
Murray said the research showed there was a strong desire for workforce education and training, inclusive policies and procedures and services that were “respectful, compassionate and person-centred”.
Hannah Morgan, National Palliative Care Project coordinator for the peak body LGBTIQ+ Health Australia, told the conference there were high rates of healthcare discrimination for LGBTIQ+ people in Australia and internationally.
At most risk were LGBTIQ+ people “who sit at the intersection of multiple identities”, such as people with disability, Aboriginal and Torres Strait Islander people and culturally and linguistically diverse (CALD) people, who “may have even more specific palliative care needs”.
The conference heard that barriers to palliative care for sexuality and gender diverse people included: a lack of recognition of chosen family, partners, carers and next of kin (including for financial decision-making and bereavement support); discrimination and stigma; social isolation and loneliness; fear of sub-standard care from faith-based palliative care providers; disrespect for bodily autonomy, fears of being mis-gendered and failure by staff to use preferred pronouns.
This often meant LGBTIQ+ people delayed or avoided palliative care, did not disclose their sexuality for fear of discrimination, and reported “fatigue” when having to constantly educate healthcare professionals about their needs.
When asked in the National Palliative Care Project survey what do you need to feel safe, respected and supported in palliative care, one respondent said:
Queer literate clinicians for when I can’t be f****d explaining my life anymore because I’m dying.”
Palliative care services needed to consider cultural competency and safety because “there is this distrust in healthcare services, which is incredibly valid”, Morgan said.
She said one of the strongest findings of the national survey was the high levels of concern about religious and faith-based palliative care providers, with one healthcare professional commenting: “I work in the field of education for healthcare professionals and I am not confident that their training covers their personal/moral/religious biases in order to provide what an LGBTIQ+ patient wants or needs.”
This concern about sub-standard care, a lack of cultural competency and bias due to religious beliefs about sexuality or gender diverse people was also raised in the two other research projects.
The national survey – of LGBTIQ+ people and healthcare staff – is part of a three-year project that will develop e-modules to build the capacity of the palliative care workforce to respond to the needs of LGBTIQ+ people in a culturally inclusive way.
In another research project, Nick Roberts, NSW Health senior policy officer in Community Care and Priority Populations, told the conference his collaboration with the University of New South Wales aimed to inform policy to better meet the palliative care needs of diverse LGBTIQ+ communities.
He said the palliative care needs of LGBTIQ+ communities were expected to increase since older lesbians and homosexual men were at higher risk of some cancers than the general population, transgender and gender-diverse people were at increased risk of cardiovascular disease and diabetes, and people with HIV were living longer from the peak of the epidemic but were ageing.
Consistent findings from his research of “what worked well” in palliative care included dignity and respect for the chosen family and partner, correct gendering, using a person’s correct name and pronoun, and “quite moving accounts of the difference it made when a partner could stay in the room” with a patient at the end of life.
Roberts said the findings of the research, which is yet to be published, confirm the 2015 position statement of the National LGBTI Health Alliance and Palliative Care Australia that: “Palliative care for LGBTI people with life-limiting conditions should be accessible, inclusive and affirm their right to dignity and respect”.
Caring at end of life in western Sydney
Croakey’s Allison Barrett also livetweeted an additional ‘Diverse Needs Groups’ session at #21OPCC:
First presenter is Rosemary Leonard, talking about ‘In the end, what matters? Understanding the end of life needs of Aboriginal and some CALD communities living in Western Sydney‘.
Collection and reporting of data in these communities are inconsistent. ‘Western Sydney caring at end-of-life team’ started a project to listen to Aboriginal people and Arabic, Hindi and Mandarin speaking communities about their needs.
Wanted to explore how these communities experience death, dying and caring, and what supports and services they use and find helpful.
Research conducted by community consultation, online survey, focus groups, photovoice interviews and face to face interviews.
Community advisors included chaplains, death doulas, funeral directors, pastoral care volunteers, Aboriginal community development workers.
Key findings – “we need more Nicoles!” She provided key communication, advocacy about cultural needs, provides education and guidance about more appropriate practices. She works across silos, helping people identify the services they need.
Culturally specific supportive and palliative care workers connect community. It’s a very large role – a collaborative team approach may be appropriate to share the workload.
Additional resources identified for CALD communities include training and education in bilingual community educators.
Volunteers are greatly valued.
“One of the things that just came out all the time was the importance of trust, respect and relationships” – Rosemary.
Multicultural health services and volunteer programs need to be extended to support Aboriginal and CALD communities through their end-of-life journey.
Palliative care for asylum seekers
The conference also heard about the palliative care issues for a Turkish asylum seeker with terminal cancer in a presentation from Emeritus Professor Margaret O’Connor, Clinical Research Consultant – Monash University Nursing and Midwifery and Melbourne City Mission Palliative Care.
The conference saw great interaction via Twitter, highlighted by the data collected via the #21OPCC hashtag by Symplur.