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Concurrent Session - Diverse Needs Groups
12:05 pm
10 September 2021
Room 3
Presentation Streams
Diverse Needs Groups
Session Description
Chair: Linda Hansen
Session Program
12:05 pm
12:07 pm
Background
Australia is one of the most successful multicultural countries in the world, resulting from continuous immigration for the last 70 years or so. People from almost 200 countries have settled in Australia, with more than one in five speaking a language other than English at home. Those who arrive in Australia seeking protection from conflict in their own country may seek protection as a refugee.
Australia is one of the most successful multicultural countries in the world, resulting from continuous immigration for the last 70 years or so. People from almost 200 countries have settled in Australia, with more than one in five speaking a language other than English at home. Those who arrive in Australia seeking protection from conflict in their own country may seek protection as a refugee.
Aim
To highlight issues of care for an asylum seeker at the end of their life, and to make recommendations for addressing their needs.
Methods
Drawing on a case study of Aykan, an asylum seeker, thematic analysis was utilised to draw out aspects of care which were distinctive and arose from the individual’s refugee status.
Findings
Having had treatment in his own country, Aykan’s medical history was difficult to find. His visa status prohibited work or study, which meant no income. Limited English inhibited Aykan’s ability to interact with health services needed, including mental health services. And meeting culturally-sensitive end-of-life care wishes were difficult. While this case study highlights these and other issues, there is a dearth of research describing palliative care for asylum seekers and much work is required to develop an evidence base for this population.
12:27 pm
Background
Despite the devastating impact of HIV/AIDS, end-of-life care planning among sexuality and gender diverse communities is relatively under-researched, especially in Australia. There are limited data on the experiences and needs of LGBTQ+ people who take on caring roles. In addition, there is limited to no information about palliative care and end-of-life that speaks to the needs of our communities.
Aim
ACON formed a partnership Carers NSW, Palliative Care NSW, Positive Life NSW, and Seniors Rights Service and developed a community advisory group. A community needs analysis was co-designed with partners and the advisory group. The findings will inform the development of a toolkit for LGBTQ+ people and suggest areas of future work.
Methods
A mixed methods online survey about perspectives was conducted for a period of six weeks, with promotion by partner organisations networks. The survey invited LGBTQ+ people and their carers aged 18+ and living in NSW. Question themes included: needs and challenges, who to involve in palliative care planning, rates of end-of-life planning documents completed, and knowledge about legal rights at the end-of-life.
Results/Findings
A total of n=171 eligible participants completed the survey, across genders and sexualities, across inner Sydney and regional NSW. Results described a range of challenges for our communities accessing palliative care – including issues around families of choice being recognised, that services are affirming and respectful of our genders and sexualities, and that there is limited information that meets our communities’ needs.
Although participation by Aboriginal and/or Torres Strait Islander peoples was consistent with the NSW population (3.5%), the small sample size limited generalisability. Our sample was missing responses from LGBTQ+ people from multicultural and multifaith background, particularly from Greater Western Sydney. Community-connected researchers will be engaged to further our understanding of the palliative care needs of our communities in Greater Western Sydney.
12:47 pm
Background:
Lesbian, gay, bisexual, transgender and gender diverse people and people with intersex variations (LGBTI people) are at increased risk of some chronic diseases and cancers, among other conditions. Although equitable access is a priority within the NSW End of Life and Palliative Care Framework, little is known about community members’ perspectives on barriers and enablers to palliative care. This study aims to understand LGBT+ community views and preferences in palliative care in NSW.
Methods:
A community survey and follow up interviews were conducted in mid 2020. We received 419 survey responses, and conducted six in depth follow-up phone interviews. The sample included LGBT+ people with experience of palliative care, and those without such experience. Respondents also disclosed preferences on the setting to receive palliative care. Thematic analysis was conducted.
Results:
Some perceived barriers from community members related to: being ‘out’ (e.g. ones’ sexual orientation and gender identity known to services), biological family, knowledge and attitudes of staff, responsiveness of services (particularly for transgender health), decision making, rural and regional concerns and loneliness and isolation. Perceived strategies and enablers related to: developing and distributing inclusive palliative care information, and engaging with community(ies), inclusive and non-discriminatory service delivery, ensuring respectful approaches to person-centred care, and staff training and awareness building of LGBT+ needs and issues.
Discussion:
The majority of experiences of palliative care recounted by participants were positive, however we have identified that LGBT+ people require better access to knowledgeable and supportive services. Palliative care information should be inclusive and services respectful and welcoming. There are varied opinions on whether palliative care is ‘different’ for LGBT+ people, however particular consideration should be made to how services respond to and engage with people from diverse population groups. These insights can support ongoing policy and service development activities to further enhance palliative care.
Lesbian, gay, bisexual, transgender and gender diverse people and people with intersex variations (LGBTI people) are at increased risk of some chronic diseases and cancers, among other conditions. Although equitable access is a priority within the NSW End of Life and Palliative Care Framework, little is known about community members’ perspectives on barriers and enablers to palliative care. This study aims to understand LGBT+ community views and preferences in palliative care in NSW.
Methods:
A community survey and follow up interviews were conducted in mid 2020. We received 419 survey responses, and conducted six in depth follow-up phone interviews. The sample included LGBT+ people with experience of palliative care, and those without such experience. Respondents also disclosed preferences on the setting to receive palliative care. Thematic analysis was conducted.
Results:
Some perceived barriers from community members related to: being ‘out’ (e.g. ones’ sexual orientation and gender identity known to services), biological family, knowledge and attitudes of staff, responsiveness of services (particularly for transgender health), decision making, rural and regional concerns and loneliness and isolation. Perceived strategies and enablers related to: developing and distributing inclusive palliative care information, and engaging with community(ies), inclusive and non-discriminatory service delivery, ensuring respectful approaches to person-centred care, and staff training and awareness building of LGBT+ needs and issues.
Discussion:
The majority of experiences of palliative care recounted by participants were positive, however we have identified that LGBT+ people require better access to knowledgeable and supportive services. Palliative care information should be inclusive and services respectful and welcoming. There are varied opinions on whether palliative care is ‘different’ for LGBT+ people, however particular consideration should be made to how services respond to and engage with people from diverse population groups. These insights can support ongoing policy and service development activities to further enhance palliative care.
1:07 pm
Background:
Access to high quality medical care in prison is a human right, but is restricted by resource, staffing and environmental limitations. People in prison with life limiting illness and palliative care needs are particularly disadvantaged, as they may require intensive, daily care that may not be available in the prison setting.
Aim:
To explore the systems, provider and patient level barriers and facilitators to providing palliative care in prisons.
Methods:
A systematic review of peer-reviewed, English-language empirical literature was undertaken, searching the Medline, PubMed, PsycINFO, Web of Science, Proquest Central, CINAHL and CINCH databases in July 2020. Data was extracted and synthesised using a narrative approach.
A systematic review of peer-reviewed, English-language empirical literature was undertaken, searching the Medline, PubMed, PsycINFO, Web of Science, Proquest Central, CINAHL and CINCH databases in July 2020. Data was extracted and synthesised using a narrative approach.
Results:
Of the 52 included articles, most originated in the United States (n=36), with the remainder from other high income countries. Identified system-level barriers and facilitators included: a lack of clinical guidelines for the correctional setting, and the development and application of palliative care policy across correctional facilities. At an organisational-level, flexibility of custodial rules and degree of access to people in prison impacted care access. Provider-level considerations were centred on the quality of communication and collaboration between correctional clinicians and correctional services officers which shaped the effective delivery of care. Patient-level barriers and facilitators were related to the degree of choice, psychosocial support, and patient involvement in medical decision-making. This systematic review demonstrates systemic factors affecting delivery of palliative care at each level of influence, resulting in care of variable accessibility and quality. Findings from this review highlight the critical need for further research to explore the dynamics of the correctional setting and inform the development of innovative solutions for the provision of palliative and end of life care within the unique environment of prison.
Of the 52 included articles, most originated in the United States (n=36), with the remainder from other high income countries. Identified system-level barriers and facilitators included: a lack of clinical guidelines for the correctional setting, and the development and application of palliative care policy across correctional facilities. At an organisational-level, flexibility of custodial rules and degree of access to people in prison impacted care access. Provider-level considerations were centred on the quality of communication and collaboration between correctional clinicians and correctional services officers which shaped the effective delivery of care. Patient-level barriers and facilitators were related to the degree of choice, psychosocial support, and patient involvement in medical decision-making. This systematic review demonstrates systemic factors affecting delivery of palliative care at each level of influence, resulting in care of variable accessibility and quality. Findings from this review highlight the critical need for further research to explore the dynamics of the correctional setting and inform the development of innovative solutions for the provision of palliative and end of life care within the unique environment of prison.
Background
Australia is experiencing a significant increase in illicit drug use among adults aged 50 years and over. There is currently a lack of empirical evidence to inform care at the end of life (EOL) for people who use illicit drugs (PWUD).
Australia is experiencing a significant increase in illicit drug use among adults aged 50 years and over. There is currently a lack of empirical evidence to inform care at the end of life (EOL) for people who use illicit drugs (PWUD).
Aim
To examine medication and hospital use at the EOL for patients who use illicit drugs and explore the experiences of treating health professionals responsible for their care.
To examine medication and hospital use at the EOL for patients who use illicit drugs and explore the experiences of treating health professionals responsible for their care.
Methods
A retrospective medical record review of consecutive IDU deaths in a tertiary hospital 2012-2017 was undertaken. Demographic, clinical, medication and health service use data were extracted for the final 3-months of life. Focus groups with health professionals were conducted until saturation.
A retrospective medical record review of consecutive IDU deaths in a tertiary hospital 2012-2017 was undertaken. Demographic, clinical, medication and health service use data were extracted for the final 3-months of life. Focus groups with health professionals were conducted until saturation.
Results
55 IDUs aged 25-78yrs (median 53yrs) were identified. 60% had non-malignant diagnosis. 82% of PWUDs were illicit opioid users, predominantly heroin use, and 33% were poly-substance users. PWUDs were compared with a matched comparator group and found to have a shorter length of stay in their final admission ending in death. PWUD received greater doses of opioids and midazolam in their final 3-days of life, particularly on the day of death (PWUD 474mg; comparator patients 239mg (p=0.04)). Opioid dose increases at EOL for PWUD were of similar magnitude to comparator patients, with no exponential dose escalation. Focus groups with 54 health professionals revealed themes, including: seeing the person, knowing their story; diagnostic overshadowing; the paradox of pain; and ongoing collaborative dialogue.
55 IDUs aged 25-78yrs (median 53yrs) were identified. 60% had non-malignant diagnosis. 82% of PWUDs were illicit opioid users, predominantly heroin use, and 33% were poly-substance users. PWUDs were compared with a matched comparator group and found to have a shorter length of stay in their final admission ending in death. PWUD received greater doses of opioids and midazolam in their final 3-days of life, particularly on the day of death (PWUD 474mg; comparator patients 239mg (p=0.04)). Opioid dose increases at EOL for PWUD were of similar magnitude to comparator patients, with no exponential dose escalation. Focus groups with 54 health professionals revealed themes, including: seeing the person, knowing their story; diagnostic overshadowing; the paradox of pain; and ongoing collaborative dialogue.
Conclusion
Patients with previous or current experience of illicit drug use have different medication requirements at EOL. This finding has important implications for clinical practice, especially given the lack of empirical evidence in this area and the projected growth of this population group over time. Further prospective research is required to more fully understand the palliative and EOL care needs of this largely under-examined patient group.
Patients with previous or current experience of illicit drug use have different medication requirements at EOL. This finding has important implications for clinical practice, especially given the lack of empirical evidence in this area and the projected growth of this population group over time. Further prospective research is required to more fully understand the palliative and EOL care needs of this largely under-examined patient group.
Source of funding: Inclusive Health Innovation Fund, St Vincent’s Health Australia
Authors: S Panozzo, P Ulrick, D Marco, A Collins and J Philip
Authors: S Panozzo, P Ulrick, D Marco, A Collins and J Philip
