“Simply put: systems failed”: lessons from the Coroner's inquest into the rheumatic heart disease Doomadgee cluster

Positionality statement

Avelina Tarrago is a Wangkamahdla woman from Central West Queensland and is one of three Aboriginal and Torres Strait Islander Barristers in private practice in Queensland. Avelina was Counsel for Gidgee Healing in the coronial inquest of focus in this perspective article. Ella Veit‐Prince is a non‐Indigenous woman who has professional experience in the policy team of an Aboriginal and Torres Strait Islander Community‐Controlled Health Organisation (ATSICCHO). Claire Brolan is a non‐Indigenous woman who is a health and human rights specialist with professional experience at an ATSICCHO. Claire attended the findings delivered by Coroner Wilson in Cairns on 30 June 2023. This article on the coronial inquest findings presents the authors’ views alone and should not be attributed to any other person or organisation.

Introduction

On 30 June 2023, Coroner Wilson delivered findings into the deaths of three Aboriginal women in the remote Queensland town of Doomadgee.1 Doomadgee sits on the lands of the Waanyi and Ganggalidda peoples and was established as a Christian mission in 1933 (Supporting Information, figure 1). Despite the isolation, tough remote socio‐economic conditions, and experience of the settler colonial project, it has a strong community determined to maintain lore and culture.

The inquest investigated the deaths of Doomadgee residents Betty (aged 18 years), Ms Sandy (aged 37 years), and Kaya (aged 17 years), who died from rheumatic heart disease (RHD) between 2019 and 2020. Following the strong advocacy of family members, a Four Corners investigation was broadcast prior to the inquest.2 RHD and its precursor acute rheumatic fever (ARF) are caused by an autoimmune response to bacterial infection and are “one hundred percent preventable”.1 For over three decades, these diseases of poverty3 have been mainly eliminated among the non‐Indigenous Australian population.4 Yet RHD and ARF diagnoses are increasing in First Nations communities.5 Aboriginal and Torres Strait Islander peoples have among the highest rates of ARF in the world and experience an inequitable burden of RHD,5 with Queensland having Australia's highest number of diagnoses.5,6 By 2031, the RHD disease burden is predicted to cost Australia's health system more than $343.7 million — an avoidable figure.4,7 As the Coroner emphasises, the lives lost and grief forever suffered by Betty, Ms Sandy and Kaya's families was entirely preventable. In addition, in May 2023 the Office of the Health Ombudsman (OHO) released two investigative reports containing 21 recommendations for improving health service provision in Doomadgee following the three women's passing (Supporting Information, table 1).8,9 Both the Coroner and OHO recommend the need for actioning measures to improve:

• health service cultural safety;
• community engagement for safe health care provision;
• patient data collection and record keeping;
• primary and tertiary health care information sharing, partnership and collaboration; and
• remote staffing and recruitment challenges.

Unlike the OHO, the Coroner emphasises the role of prevention in combatting deaths from ARF (and in turn RHD) and other chronic medical conditions. The Coroner recommends improvement of the social determinants of health, especially for a community living in overcrowded conditions with limited access to “health hardware” (washing machines and beds) and lower health literacy.1,10 Queensland Health is tasked to investigate local solutions: to consult with Doomadgee Shire Council to employ an environmental health officer to conduct and action environmental health and housing assessments, and, in collaboration with other government agencies, build a laundromat and showering facilities for the community.1

The Coroner and OHO recommendations also differ in the processes to be adopted to address the many health care access issues identified. While the Coroner's recommendations highlight the critical need to build community trust in and between health services and call upon the community and health services to codesign solutions, the OHO is prescriptive. The Coroner recommends Queensland Health, the North West Hospital and Health Service (NWHHS) (Queensland Health entity), and Gidgee Healing (ATSICCHO) engage an expert to work with the community to assess the local health care services and propose a model of care to improve collaboration among providers. Conversely, the OHO recommends Doomadgee Hospital (NWHHS) and Gidgee Healing “develop a set of working principles for a local service partnership agreement”.8,9

The Coroner's recommendation draws on the Human Rights Act 2019 (Qld) (Human Rights Act) and its preamble, which is a relatively new (but imperfect) legal tool that advocates can use to combat racial discrimination in health care systems and services in Queensland.11 The Human Rights Act recognises Aboriginal and Torres Strait Islander peoples have the right to self‐determination; opposed to health systems decisions being made for their community and without the community's full prior and informed consent and active leadership, participation and ownership. In this context, codesign with Queensland Health should involve Queensland Health taking full responsibility for its institutional racism and taking full responsibility in addressing such racism by applying antiracism and critical race theory and human rights law. Recommendations provided by local community are in fact directives and these directives should be fully up taken by Queensland Health, not distilled through Queensland Health negotiation and consultation as part of codesign processes.

The OHO's recommendation otherwise lends to the paternalistic approach governments often employ, using service partnership language that, when applied in practice, curtails First Nations peoples’ right to self‐determination and subordinates the community's participation in (and ownership of) health care systems decision‐making processes and their outcomes. The latter approach lacks grounding in section 28 of the Human Rights Act on Indigenous self‐determination and the principles of full prior and informed consent, which promote the distinct cultural rights of First Nations people, including their right not to be subjected to forced assimilation.11 While Doomadgee community consultation is suggested by the OHO, the Queensland Government's commitment to “reframing the relationship” and the Path to Treaty means the days of consultation are over: codesign is the minimum standard for First Nations health policy and implementation.12

The Coroner refers to four other investigations, reviews, evaluations or similar conducted over six years between 2016 and 2022 that raise concern about the provision of health care in the region.1 The deaths of Betty, Ms Sandy and Kaya reinforce that these efforts have not translated into demonstrable health service access improvements, nor built trustful health service and community relations for safe access. Since the Coroner and OHO's combined 40 recommendations were released, the authors are unaware of Queensland Health establishing a dedicated coronial inquest response team or governance process, or having begun to closely liaise with Gidgee Healing to support a collaborative, codesigned action plan with the community.

Queensland Health holds the structural power and resources to progress transformative action.13 The Department's lack of a timely, cogent response to the Coroner's recommendations and those of prior investigations and reviews is concerning.1,8,9 This discriminatory omission breaches the Doomadgee community's individual and collective “right to access health services without discrimination” under section 37 (1) of the Human Rights Act.11 Public entities are legally obligated to demonstrate zero tolerance to discriminatory acts (and omissions) within their institutions, systems and services.14,15,16,17 Thus, Queensland Health is legally required to take immediate and effective steps to tackle any discriminatory treatment in Doomadgee Hospital, to affirmatively advance the community's health and wellbeing. While a First Nations‐led codesigned process to effectively address discriminatory practices will be incremental, the immediacy of the zero‐tolerance principle makes clear there is urgency in its start.

Racial discrimination is a well known determinant of health for Indigenous people worldwide.17,18,19 Institutional racism, detailed in the expert opinions doctors provided to the Coroner, infuses the Doomadgee Hospital and impedes the provision of quality care.1 Despite Queensland Health's numerous commitments to cultural capability and publication of many guidelines and strategies to tackle racism, the Coroner notes staff lacked awareness of these resources and had inadequate cultural training and education.1 Further, the Coroner noted the Doomadgee Hospital's waiting area had a Crim Safe mesh window with an open slot. The deceased women's family described this as a prison‐like “metal cage” designed to “block us out”.1 The Coroner agreed, “The people of Doomadgee understandably found the structure confronting and I accept it would have sent a clear message to the community of being ‘other’”.1 Media reporting on these cases especially highlight the unconscionable othering and lack of human dignity the deceased's family and community consistently felt about health service provision delivered by Queensland Health to the local community.20,21 The Coroner identified the NWHHS provider's racist practices were nuanced, covert and included bias and prejudicial language in clinical notes and failure to treat Aboriginal patients with the respect and seriousness their conditions demand.1 Several times, when Betty and Kaya presented to Doomadgee Hospital, they were turned away, sent home with paracetamol. A six‐year‐old First Nations child who tragically died in 2017 had a similar clinical care experience on presenting to a Torres and Cape Hospital and Health Service.22

Government failure to adequately address discrimination and subsequent health inequities in Queensland's health care system is long‐standing.23 In 2017, Queensland's Anti‐Discrimination Commissioner commissioned Adrian and Henrietta Marrie to develop an assessment Matrix to identify, measure and report on racism in Queensland hospitals. Further conceptual clarity on institutional racism, and its existence particularly in the Queensland health care context, is presented in the report and in an earlier work the Marries co‐authored.23,24 Through application of that Matrix tool, very high to extremely high levels of institutional racism were identified within all of Queensland's 16 hospital and health services.24

While the OHO's recommendations do not specifically address racism (beyond recommending that community feedback be gathered on NWHHS cultural safety),8 the Coroner explicitly recommends Queensland Health, NWHHS and Gidgee Healing adopt the Matrix assessment tool to identify and monitor all forms of racism moving forward, and address the recording of clinical notes to avoid implicit negative cultural and racial connotations. The Coroner recognises that calling out racism where it exists is the first step: “Language matters and is at the forefront of societal change”.1

The Coroner acknowledged the force of Adrian and Henrietta's report in expediting actions to achieve First Nations health equity. In 2021, the Queensland Parliament passed legislation requiring each hospital and health service to develop and embed health equity strategies.25,26 These strategies have been developed and offer hope of a plan for hospital and health services to work with ATSICCHOs and the local community to break down barriers to achieving health equity. However, as the Coroner reminds, “for each to be successful, the various interventions must reach the grassroots level”.1 Since Queensland hospital and health services are legally compelled to introduce health equity strategies that include a key service performance measure to actively eliminate racial discrimination and institutional racism, Queensland Health has a responsibility to ensure each hospital and health service, ATSICHHO and community is sufficiently resourced to ensure compliance. This includes adequate funding allocations, particularly to services in remote communities. ATSICCHOs must be appropriately resourced and respected. Otherwise, as the Coroner found in the case of Gidgee Healing, the institutionalised devaluing of First Nation agency and self‐determination will continue.1

The Coroner's recommendations find anchor within Queensland's new human rights law27,28 and the overarching political determinants that include Aboriginal and Torres Strait Islander peoples “collective freedoms from oppression and domination by an external political power; and the collective freedom of a people to be self‐governing”.29 Here, we further note Queensland's Health Practitioner Regulation National Law (2023) that draws on the amended Commonwealth Health Practitioner Regulation Law, which obliges every registered clinician in public or private practice in Queensland to “[contribute] to the elimination of racism in the provision of health services”.30 With the pursuit to eliminate racism a legal obligation for clinician registration, a breach can amount to practitioner suspension or cancellation.

Need for Queensland Health implementation of the Coroner's findings — not commitment to action — is and has been urgent and compelling. In the face of tragedy, the Queensland and Commonwealth governments should see this as a direct call to action to codesign, implement, monitor and evaluate a transformative community‐led Healing Model of Change that addresses the local social determinants of health and adequately resources and respects the local community‐controlled health service and sovereignty and self‐determination of local community.