Volume 213 Issue 5

The pandemic has highlighted some important challenges in our health care system, but system reform can occur rapidly when needed

Gabriel Elan Blecher · Grant A Blashki · Simon Judkins

Compared with the mitigation and suppression approaches of most Western countries, elimination can minimise direct health effects and offer an early return to social and economic activity

Michael G Baker · Amanda Kvalsvig · Ayesha J Verrall

Understanding the multiple identity groups of Aboriginal and Torres Strait Islander LGBTQ+ young people can assist in meeting their health care needs Where does a young, LGBTQ+ (lesbian, gay, bisexual, transgender, queer, and other non‐heteronormative or non‐binary sexual and gender identities, including asexual) Aboriginal and Torres Strait Islander person go for health care in Australia? Do they attend an Aboriginal community controlled health organisation in search of culturally sensitive care? Or do they visit an LGBTQ+‐friendly health service to access staff trained in sexual and gender diversity? Is there a space for them, and other LGBTQ+ Aboriginal and Torres Strait Islander young people, in the Australian health care landscape? These questions are being posed by Indigenous LGBTQ+ health advocates.1 Recent national policy documents outline the need for comprehensive health care for Aboriginal and Torres Strait Islander LGBTQ+ young people.2,3 Despite this identification in policy, limited information is available to health practitioners on working with Aboriginal and Torres Strait Islander LGBTQ+ young people (Box 1). Practitioners are limited by the absence of an integrated framework as well as a dearth of research into these young peoples’ health needs and service preferences. Intersectionality theory highlights that individuals can face multiple structural inequalities within each of the social groups that they occupy, which also affect their access to health, social and economic resources.4 We suggest intersectionality theory as a guiding principle for research and practice with Aboriginal and Torres Strait Islander LGBTQ+ young people. An intersectional approach means recognising that patients belong to multiple identity groups, such as sexual orientation and cultural groups, which are socially constructed and which affect their social positioning and subsequent treatment, such as discrimination, within health care systems.4 The health and wellbeing of Aboriginal and Torres Strait Islander LGBTQ+ young people Aboriginal and Torres Strait Islander LGBTQ+ young people occupy three intersecting identities, which, when considered separately, are each linked to risks for poor health. The risks for poor physical health and social emotional wellbeing among Aboriginal and Torres Strait Islander peoples are well documented.5 Within Australia, LGBTQ+ individuals experience heightened suicidality, serious assault, homelessness and psychological distress6,7 compared with their heterosexual, cisgender peers. These increased health risks do not indicate inherent vulnerability but rather are outcomes of discrimination, marginalisation, racism, transphobia and homophobia.15 Young people not only experience health risks associated with their development phase — for example, heightened risk of psychopathology, physical injury and emotional dysregulation9,10 — but are also often unaware of health services available to them or have fears around confidentiality.11 LGBTQ+ young people, in particular, report feeling isolated from health services.6 Health practitioners may therefore see Aboriginal and Torres Strait Islander LGBTQ+ young people in a variety of settings, including in suicidal crisis, seeking care after a serious assault or injury, or counselling for prolonged psychological distress. Although health care workers may be aware of the health risks associated with being Aboriginal and Torres Strait Islander, LGBTQ+ or young, the health outcomes for someone with these intersecting identities remain largely unknown. Emerging literature has begun to identify the health concerns of people who are both Aboriginal and Torres Strait Islander and LGBTQ+, although this work is thus far limited to adults.12,13,14 Consistent with research into these groups separately, findings suggest that suicidality, substance misuse and homelessness are primary health concerns for Aboriginal and Torres Strait Islander LGBTQ+ people. However, the evidence in adults also points to a set of health‐related concerns which are unique to being Aboriginal and Torres Islander and LGBTQ+. For example, some individuals move off Country in search of more accepting communities or to access gender‐affirming care.13,14 However, moving off Country can lead to feelings of dislocation due to loss of connection to Country, which can then precipitate illness. Arguably, Aboriginal and Torres Strait Islander LGBTQ+ young people find it harder to move off Country because of reduced financial and personal resources. Support and service in remote areas are also scarce.14 An inability to express gender or sexual identity is another health‐related concern for Aboriginal and Torres Strait Islander LGBTQ+ people. Some people report feeling pressure to suppress their sexual or gender identity when they are in Indigenous communities.12 Exclusion of gender diverse individuals from men's or women's business can negatively affect social and emotional wellbeing.13 Contemporary culture‐based wellbeing programs often continue this practice of providing support along binary gender lines. Some of the authors’ own experiences reiterate this unintentional bias; Indigenous health care providers use terms such as “sis”, “brother” or “sistergirl” when answering the phone, which can mean that people are misgendered. Although we acknowledge that these terms carry meaning to the Indigenous community, they can be problematical for trans and non‐gender‐conforming young people. There is therefore scope to develop a culturally sensitive way to bypass the use of these gendered terms until a young person's pronouns have been established. Intersectionality theory as a guiding framework International models8,15 provide a useful footing on which to consider intersectionality in the Australian health context. These models demonstrate how societal oppressions of racism and heterosexism within health care systems influence internal (eg, an individuals’ self‐concept) and external (eg, lack of LGBTQ+‐specific services, stigma toward multiple minority groups) risk factors. Importantly, the impact of these risk factors resulting from societal oppressions is not simply a multiplicative effect. Rather, individuals living within multiple minority groups face health disadvantage because of their unique social positioning. Common across these models is an emphasis on the social context of health outcomes because membership in multiple minority status groups can be associated with increased stresses and barriers impeding an individual's coping efforts. Further, when practitioners do not consider how a patient's gender, social class, ethnicity and sexual orientation influences their care needs, patients who experience multiple oppressions can become invisible by being left out of health research or ignored in policy and health promotion efforts, leading to delays in seeking care. Such invisibility in health care is a reported concern among Aboriginal and Torres Strait Islander LGBTQ+ people.12 Health care at the intersection: implications for health research and practice Adopting an intersectional approach to health care requires practitioners to consider the relationship between multiple structural inequalities faced by Aboriginal and Torres Strait Islander LGBTQ+ young people, and downstream consequences for this group's wellbeing. Doing so will likely require additional training and professional development. As Box 1 outlines, although not health providers per se, services and supports led by Aboriginal and Torres Strait Islander LGBTQ+ people have emerged in response to the multiple barriers presented by existing health services. These services provide a space for Aboriginal and Torres Strait Islander LGBTQ+ people to discuss intersecting identities. For example, the Gar'ban'djee'lum Network offers a space in which to celebrate sexual and cultural identity, and Black Rainbow partners with an online newspaper to publish content by Aboriginal and Torres Strait Islander LGBTQ+ authors, providing a platform for voices from people living at this intersection. Service providers can increase their awareness of the contemporary issues faced by Aboriginal and Torres Strait Islander LGBTQ+ young people by accessing online information from these organisations. Moreover, concrete steps which practitioners can follow can be guided by an awareness of intersecting categories, diversity of knowledges, power and multilevel analysis, reflexivity, time and space, and equity and social justice.8 Actions that practitioners can take which are consistent with these domains are outlined in Box 2. The increased focus on Aboriginal and Torres Strait Islander LGBTQ+ young people, led by and advocated for by Aboriginal and Torres Strait Islander LGBTQ+ community members and researchers, is a welcome step towards ensuring safe and effective health care for all Australians. However, there has been little guidance for practitioners on how best to work with this patient group. Health services wanting to support Aboriginal and Torres Strait Islander LGBTQ+ young people can: include an LGBTQ+ status question on intake forms; services can also use an open‐ended question format for young people to describe their gender, rather than tick‐boxes of “male”, “female” or “other”; provide visual displays of support in waiting rooms, such as displaying a rainbow pride flag and other pride flags alongside Aboriginal and Torres Strait Islander flags; and establish mechanisms for Aboriginal and Torres Strait Islander LGBTQ+ young people to provide service feedback (eg, asking patients from this group how the service can best meet their needs). Further, although there are increasing calls to apply an intersectional approach in health care — none more powerful than those of Aboriginal and Torres Strait Islander LGBTQ+ young people themselves — research has yet to systematically evaluate treatment outcomes for patients when such an approach is applied. Future research should measure treatment outcomes in services where staff apply an intersectional lens. The omission of young people from previous research into the health and wellbeing of Aboriginal Torres Strait Islander and LGBTIQ+ people also remains a pressing concern. Further research with young people is needed if practitioners and services working with young people are to effectively and appropriately work within an intersectional framework. Box 1 – Current services available for Aboriginal and Torres Strait Islander LGBTQ+ people* Organisation name Description Website Black Rainbow Advocacy for Aboriginal and Torres Strait Islander LGBTQ+ suicide prevention Support for homelessness, domestic violence, and people involved in the justice system http://www.blackrainbow.org.au/ Tekwabi Giz Provides support to the National LGBTI Health Alliance for Aboriginal and Torres Strait Islander LGBTQ+ people, specialised knowledge, advocacy https://lgbtihealth.org.au/tekwabigiz/ IndigiLez Women's Leadership and Support Group Special focus on Indigenous lesbians and same sex‐attracted women Advocacy for Aboriginal and Torres Strait Islander LGBTQ+ people, cultural retreats, safe sex workshops, family days, workshops, social activities, self‐defence workshops https://www.facebook.com/IndigiLez/ Sisters and Brothers NT Social change, advocacy, support, consultation, resource creation, and research, and awareness for sistergirls, brotherboys, and Aboriginal and Torres Strait Islander LGBTQ+ people https://www.facebook.com/SistersBrothersNTCelebratingDiversity/ First Nations Rainbow Acceptance, celebration, raising community awareness, improving wellbeing, and reducing stigma and discrimination https://www.firstnationsrainbow.org.au/ Yarns Heal Suicide prevention among Indigenous peoples, including sistergirls, brotherboys and LGBTQ+ individuals https://www.yarnsheal.com.au/ Gar'ban'djee'lum Network Support, advocacy, information on healthy lifestyles, social events, fundraising, and celebration of sexual and cultural identity https://www.afao.org.au/article/us-mob-garbandjeelum-network/ Blaq Aboriginal Corporation Celebration, representation and increased visibility of Aboriginal and Torres Strait Islander LGBTQ+ community members https://www.blaq.org.au/about-about * This list of organisations in not exhaustive but provides a starting point for practitioners wanting to learn more about Aboriginal and Torres Strait Islander LGBTQ+ health. Information in the table is taken from the organisations’ websites. None of the organisations listed are young people‐specific, although some make note of the importance of young people. Box 2 – Next steps in health care provision for Aboriginal and Torres Strait Islander LGBTQ+ young people Domain8 Next steps for research and practice Intersecting categories: health professionals should consider that patients likely occupy multiple social positions, not just the identity which appears most dominant Develop LGBTQ+ health information guides that are culturally sensitive to Aboriginal and Torres Strait Islander patients and easily accessible to young people Display the Aboriginal and Torres Strait Islander flags alongside the pride flags at health services Including LGBTQ+ status options on patient intake forms Because experiences of discrimination based on sexual and gender diversity among Aboriginal and Torres Strait Islander people can occur within the context of pre‐existing trauma,12 consider applying trauma‐informed care models when working with this patient group Specific health promotion efforts and programs targeted at Aboriginal and Torres Strait Islander LGBTQ+ young people Primary research into the social emotional wellbeing of Aboriginal and Torres Strait Islander LGBTQ+ young people Primary research into experiences and preferences of Aboriginal and Torres Strait Islander LGBTQ+ young people in the health system Diversity of knowledges: consider Indigenous and queer ways of knowing and being Seek Aboriginal and Torres Strait Islander LGBTQ+ young peoples’ perspectives on their health issues Assess whether Aboriginal and Torres Strait Islander LGBTQ+ young people have a culturally specific understanding of their health and wellbeing, which may differ from dominant, medicalised explanations Primary research into how Aboriginal and Torres Strait Islander LGBTQ+ young people conceptualise health and wellbeing Power and multilevel analysis: health professionals hold greater power than Aboriginal and Torres Strait Islander LGBTQ+ young people due to their positions in society; health issues for this patient group occur across multiple levels of society Reducing power differentials in the healing relationship by using less medicalised language with patients and asking them how to best cater to their specific needs Ensuring young people understand limits of confidentiality so that they can trust practitioners with disclosing their LGBTQ+ status Practitioners attend professional development opportunities that promote appropriate ways of working with Aboriginal and Torres Strait Islander LGBTQ+ young people (such training is currently provided by some organisations listed in Box 1). Primary research into the impact of various societal oppressions on Aboriginal and Torres Strait Islander LGBTQ+ young peoples’ wellbeing Primary research into enablers of effective service delivery in this patient group Reflexivity: consistent reflection on practice decisions and how they relate to patients’ social positioning Practitioners regularly reflect on assumptions they may hold about Aboriginal and Torres Strait Islander LGBTQ+ young people and the root cause of their health problems Discussions with LGBTQ+, Indigenous and mainstream health care providers around attitudes toward Aboriginal and Torres Strait Islander LGBTQ+ young people Time and space: patient needs and preferences are not static, and vary with social positioning Practitioners remain up to date on social trends which may affect this patient group (eg, recent legalisation of same sex marriage, release of the Uluru Statement from the Heart) Practitioners ask individual patients about their experience of living at this intersection, and not assume a universal experience Primary research into health care needs and preferences across the life course in this patient group Equity and social justice: advocating for increased inclusion of Aboriginal and Torres Strait Islander LGBTQ+ young people Health professionals can use their positions of social power to advocate for the needs of Aboriginal and Torres Strait Islander LGBTQ+ young people within their collegiate relations, workplaces and the broader health sector

Bep Uink · Shakara Liddelow‐Hunt · Kate Daglas · Dharma Ducasse

Voluntary assisted dying is not part of palliative care The Voluntary Assisted Dying Act 2017 (Vic)1 came into effect in Victoria on 19 June 2019. We present the case of an inpatient death under the voluntary assisted dying Act in our health service and describe a short case history followed by a discussion examining two relevant topics related to voluntary assisted dying and palliative care: conscientious objection and the complexity of palliative care involvement. Case report The patient was diagnosed with metastatic (axillary nodes) breast cancer in 2016 at the age of 53 years and declined completion staging and all conventional treatment options. She was referred to community palliative care services in 2019 with clinically progressive locoregional disease, manifesting as fungating malignant disease of the chest wall and axilla. She experienced symptoms of pain, nausea, anorexia, and weight loss. Pharmacological treatment options for her symptoms were refused due to her sensitivities to many medications. The patient lived alone but had support from friends and siblings. She had a history of chronic fatigue syndrome and mood disorder. She did not subscribe to a religion, but believed in the soul and an afterlife. She had been caring for her mother, who died from advanced breast cancer. Her mother's suffering at the end of her life was a significant reason for the patient's decision to pursue voluntary assisted dying. She commenced the voluntary assisted dying process in July 2019. Her initial intention was to self‐administer the voluntary assisted dying substances at her home on her birthday (early December). However, she was admitted to the palliative care unit (PCU) in late November for symptom management. During her admission, it became clear to the patient and her carer (who was also her voluntary assisted dying support person) that her deterioration would preclude her from returning home. She made a request to self‐administer the voluntary assisted dying substances in the PCU. The organisational voluntary assisted dying clinical practice guidelines stated that voluntary assisted dying could not occur in the PCU, in line with the Royal Australasian College of Physicians (RACP) statement on voluntary assisted dying, which recommended that “voluntary assisted dying must not be seen as part of palliative care”.2 The patient was informed of the organisational approach and the need to minimise misperceptions about the PCU. Both the patient and her support person understood and accepted our stance, and we commenced the search for another site within the service that could accommodate her wishes. Staff in the first venue of care option conscientiously objected to the admission. Despite her condition continuing to deteriorate and the imminence of her preferred date of administration, she remained understanding. Another venue of care within the service was found and she was transferred there 2 days before her birthday. She self‐administered the voluntary assisted dying substance on her birthday as originally intended. Conscientious objection Although not defined in the Act, conscientious objection has been outlined by the Victorian Department of Health and Human Services (DHHS) as an outcome of a conflict in beliefs or values.3 A similar conflict was recently discussed in relation to a growing concern about moral injury in health care, where moral injury was defined as “perpetrating, failing to prevent, bearing witness to, or learning about acts that transgress deeply held moral beliefs and expectations”.4 Health care professionals are subject to moral injury as a result of “being unable to provide high‐quality care and healing in the context of health care”.5 In this context, conscientious objection becomes integral to the psychological safety of the health care workforce as voluntary assisted dying is introduced into mainstream medicine. The DHHS in Victoria permitted each health service within its jurisdiction to decide on their extent of involvement in voluntary assisted dying.4 This was determined by “whether participation aligns with the values of the health service”.6 The Catholic Health and Aged Care Services, which are responsible for several health services across Victoria, were clear that they would not provide or facilitate voluntary assisted dying.7 Such health services are under no obligation to refer a patient who has requested voluntary assisted dying. However, there is a requirement to inform the patient as soon as practicable that they will not assist them and the services cannot actively inhibit the patient's access to treatment.3 All health services were obliged to nominate their level of participation, irrespective of the actual number of health care professionals in the organisation willing to be involved with voluntary assisted dying.3 These choices were: pathway A — single service (it has the necessary suite of services and staff with sufficient expertise to provide voluntary assisted dying within their existing health service); pathway B — partnership service (these services would require the assistance of other services to provide the full requirement of voluntary assisted dying); and pathway C — information and support service (it includes services electing not to provide voluntary assisted dying). The dilemma of this approach for health care services is the contentious nature of voluntary assisted dying. Organisations consist of people some of whose individual values and beliefs are unlikely to align neatly under the organisational approach when it comes to voluntary assisted dying. The Voluntary Assisted Dying Act (Part 1, Section 7) outlines scenarios where registered health care practitioners may conscientiously object to participation in the voluntary assisted dying process.1 It provides for health care staff to refuse to participate in, or be present for, the administration of the voluntary assisted dying substance. The DHHS has provided clear guidelines for individual health care practitioners with regards to conscientious objection.3 A health practitioner “has the right to refuse to assist or support the patient when the assistance is associated with voluntary assisted dying”. Health practitioners are expected to “provide routine and other care unrelated to a request for voluntary assisted dying”.3 Health practitioners also need to balance their own moral and ethical beliefs while respecting differences and ensuring the rights of the patient are upheld. Therefore, health services face the challenge of navigating between the principle of justice and equity in access to health care and the responsibilities to their employees. Health practitioners cannot conscientiously object to the routine care of a patient who has elected to undertake voluntary assisted dying. Palliative care The specialty of palliative care is in its infancy, having only received recognition in Australasia as a specialty in 1998. It aims to improve the quality of life of patients and caregivers, faced with life‐limiting illness, by addressing physical, psychosocial and spiritual challenges. There is mounting evidence that it is indeed effective in doing so.8 Nevertheless, population‐based studies demonstrate a public misperception associating palliative care with euthanasia.9 The International Association for Hospice and Palliative Care has stated that assisted dying in all its forms corrodes the work done by the specialty and risks patients refusing palliative care for fear that health practitioners may hasten their death.10 There is a continuing need to increase public awareness of palliative care and clarify misperceptions. Therefore, palliative care services need to maintain their differentiation from voluntary assisted dying. The RACP emphasises that voluntary assisted dying “must not be seen as part of palliative care” and that they need to be seen as “distinct practices”.2 Peak palliative care organisations, such as Palliative Care Australia and the Australia and New Zealand Society of Palliative Medicine, similarly emphasise that voluntary assisted dying is not part of palliative care practice.11,12 The International Association for Hospice and Palliative Care has recommended that assisted dying practices not take place in PCUs.10 The risk otherwise is further blurring of the public perception and an erosion of trust. The RACP has recommended that all patients seeking voluntary assisted dying should be made aware of palliative care and that a referral to palliative care is strongly recommended.2 The Victorian DHHS, in its voluntary assisted dying documentation, has also outlined a key role for palliative care. This includes “managing complex communication interactions with patients and families, and responding to complicated, multifaceted psychosocial and/or spiritual distress”.3 Furthermore, they describe the most “valuable [role] palliative care specialists play is supporting other healthcare teams and professionals through consultation, advice and support to provide end‐of‐life care for their patients”.3 The challenges for palliative care services are therefore clearly visible: how to maintain its distinction and separation from voluntary assisted dying and yet provide a necessary and expected service for patients at the end of life who have elected voluntary assisted dying. The RACP and the DHHS guidelines will necessitate palliative care involvement, not only for our patients and their families but also in support of medical practitioners. Palliative care services risk becoming the gatekeepers for voluntary assisted dying because of our expertise in managing complex communication and discussions around death and dying. In addition, there is the risk of further burdening already stretched palliative care services, with education, counselling and support of fellow health service staff, in matters relating to voluntary assisted dying. It is important to note that the voluntary assisted dying legislation does not provide extra resources to services to support their health care staff. Nevertheless, specialist palliative care services can help patients who elect voluntary assisted dying, as they are well placed to provide specialist support within clear boundaries of engagement. This can include optimal symptom management as well as psychosocial and spiritual support. The RACP, the Australia and New Zealand Society of Palliative Medicine and Palliative Care Australia have all emphasised the need for greater access and resourcing for specialist palliative care. Our concern echoes that of the Catholic Health and Aged Care Services that we cannot, at this time, be distracted by the diversion of limited palliative care resources to voluntary assisted dying and lose focus on the need to ensure adequate and timely access to palliative care across Victoria and Australia.7 The perception of specialist palliative care services in cases where voluntary assisted dying has been requested will remain problematic. Collaboration with families and treating teams is essential and should involve the recognition of specialist palliative care involvement separate from voluntary assisted dying. The challenge remains to educate the public and health care professionals about palliative care and how it differs from voluntary assisted dying, amidst a new background of mixed messages. Regardless of the end‐of‐life choice made, holistic care and good communication skills are not solely related to our specialty, these are skills that can be, and need to be, routine for all areas of medicine.

Eswaran Waran · Leeroy William