more_vert
Beyond media reports and coronial inquests, improvements in health care for Aboriginal people requires community control.
The Heart Failure, ABC Four Corners March 2022 episode told the poignant story of three young Aboriginal women who died of complications of rheumatic heart disease (RHD) after attending Doomadgee Hospital. Their families and community members were dismayed by the health care they received, but the health service executive dismissed their concerns, and Queensland Health announced funding for a new RHD strategy. Four Corners drew public attention to the deaths, but the coronial investigation was already underway.
RHD is a disease of poverty, and a high prevalence among Australian Aboriginal people has been recognised since the 1970s. RHD programs have increased awareness of rheumatic fever, and reported incidence is increasing. There is no clear trend in RHD prevalence, with death rates decreasing. Risk factors for rheumatic fever include overcrowding and inadequate health hardware such as taps and sinks. These circumstances facilitate spread of Group A Streptococcus (GAS), and throat and skin infections. The immune response to GAS may progress to rheumatic fever, and recurrent rheumatic fever to RHD and heart valve damage. The critical treatment for rheumatic fever is monthly penicillin injections to prevent recurrences. Severe RHD requires valve surgery, but case analysis in the Northern Territory showed that following surgery, almost one-third of patients died within 10 years, and death rates following RHD valve surgery have not declined over 30 years.
Four Corners episode: Heart Failure
Four Corners is ABC TV’s principal investigative journalism program. Episodes have exposed egregious corruption and abuse of power, and led to improvements in governance and democracy including policies to prevent torture of Aboriginal children in custody.
The Heart Failure episode gave people close to the women who died the opportunity to speak out publicly. It scrutinised their health care through stories from families and professional testimony. However, it focused on specialist care of severe RHD and overlooked the importance of primary health care in RHD control.
Journalists and mass media can be “prone to sensationalism, sins of omission and sheer inaccuracy,” and their goals differ from those of health professionals. Media reports of health care incidents can contribute to loss of trust, and undermine health professionals’ morale and reputations. This can affect health professional’s wellbeing. The coronial report noted that many health care professionals who cared for the women had left Doomadgee, distressed that they couldn’t provide quality, compassionate health care. Their departures contributed to workforce turnover, which affects quality, continuity and cost of health care. The inquest was already underway when Heart Failure was produced, and we’ll never know whether positive effects of the program outweighed its potential detrimental effects on health care in Doomadgee.
Coronial investigation of the Doomadgee RHD cluster
Australia’s coronial system investigates unexpected, unexplained, and potentially suspicious deaths. Each Australian state and territory has its own legislation, but all require coroners to determine the circumstances of deaths they investigate and make recommendations to prevent future similar deaths.
Most deaths from RHD are natural deaths and do not require coronial investigation. However, the cluster of three deaths in 12 months within the Doomadgee community of 1400 people prompted a coronial investigation and inquest.
Coronial inquests allow people close to the deceased to tell their stories and may contribute to relieving grief, and healing. The inquest reached out to the women’s community in Doomadgee, so community members could hear one another’s stories.
The coroner noted several inconsistencies between the reports of the women’s families and hospital records. For example, families gave detailed accounts of hospital attendances for which there were no hospital records. The coroner determined these were instances where oral accounts are more credible than written records. Lack of documentation is a serious risk to safe health care.
In her report of the women’s deaths, the coroner noted barriers to health care access, lack of adherence to guidelines, misjudgements and errors in management, and inadequacies of communication between patients and health professionals, and among health care services. Her key recommendations were for early prevention of RHD through action on social determinants of health, and improving cultural safety in Doomadgee Hospital. Implementation of these recommendations may reduce the likelihood of further deaths.
Inquests into deaths of Aboriginal people are often limited to direct causes and circumstances of the death, so recognising the importance of social factors, racism and systemic failures is a welcome development in coronial recommendations that could prevent further deaths of Aboriginal people. However, there is no requirement under most Coroners Acts for governments or other agencies to respond to coronial recommendations. Only the Victorian Coroners Act mandates that the government respond to coronial recommendations, but an analysis found that only one-third of recommendations were implemented. Lack of implementation of coronial recommendations contributes to lack of government accountability to Aboriginal people. Repetition in 2023 of coronial recommendations to address institutional racism first made in the 1991 Royal Commission into Aboriginal Deaths in Custody shows the strength of the forces opposing implementation of coronial recommendations.
Safety and quality interventions
There were numerous risk factors for adverse events for the women, including organisational risks of sharing health care between the Aboriginal health service and hospital; workplace risks of high workloads; and clinical risks associated with severe RHD.
Key interventions to reduce harm of adverse events include optimising reporting of incidents, avoiding blame and punishment, and addressing contributing factors. Patients and families want to know and be involved in responding to adverse events, and use their experiences to help prevent similar incidents. Open communication with affected patients and families improves patient and health service outcomes. Commitments to quality improvement reduce organisational and professional harm from adverse events.
Aboriginal community control
Aboriginal Community Controlled Health Organisations have prioritised quality management to improve health care and outcomes for Aboriginal people, including managing incidents as learning opportunities. For Aboriginal Community Controlled Health Organisations, community participation is key to quality improvement.
Reducing deaths from RHD will require leadership and health care that responds to patients, their cultures, and their social, economic and environmental circumstances. Approaches based on disease risk and top-down interventions can be counterproductive if they disempower and entrench negative perceptions of Aboriginal people. Moving power and control from non-Aboriginal to Aboriginal communities will be fundamental to preventing deaths from RHD.
Rosalie Schultz is a GP and public health physician in the Aboriginal Community Controlled Health sector. She contributed to the second edition of the Australian Rheumatic Fever/Rheumatic Heart Disease Guidelines, and was an expert witness to the Queensland Coroner in the investigation of the deaths of three First Nations women who died from RHD.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
Subscribe to the free InSight+ weekly newsletter here. It is available to all readers, not just registered medical practitioners.
If you would like to submit an article for consideration, send a Word version to mjainsight-editor@ampco.com.au.
Again, here is another article about what people and organizations have to do, or should be doing, to address RHD. Indeed, a plethora of articles in the learned journals constantly remind us of same. However, what does it take for the parents of Aboriginal children with a repetitive or long lasting sore throat, to bring or send their children to a clinic for assessment and treatment? I don’t know the answer. For that matter, we might ask ourselves if Aboriginal parents know what the ramifications of a ‘Strep throat’ might entail. What do these parents know or understand of valvular heart disease? Do they know or are they concerned that RHD may lessen the lifespan of their children? Do they not send their children to a clinic because the staff there are ‘white’ people? What are the psychological, if not behavioural barriers to care that Aboriginal people have in regard to not obtaining treatment for their children? Here then is the age old issue of access with issues such as distance and past negative experiences creating a barrier to care. A plethora of journal articles has also entered the debate on access. What does it take to get the Indigenous elders in the remote and very remote areas of the ‘homelands’ to become involved in the problem of RHD? Do they have the capability? All these questions which inevitability lead to primary care and onwards to Aboriginal caregivers and Aboriginal service providers. These are the persons who can answer the questions I raise. These are the people who can reduce the disgraceful prevalence rates of RHD among Australia’s First Nations peoples. They can do it and they will do it. It will take time. How much time? I don’t know. That said, NACCHO must acknowledge that they must do more to address the issue of RHD even if this means that they need to acknowledge right now, that they do not have enough resource. Finally, we must think upon past national efforts in the fight against RHD. Why have they been unsuccessful? I don’t know. Does anyone know or, for that matter, care? If there are answers, where are they? And then, what of evaluation? Surely, if we want they current RHD End-game Strategy to gain any success, there is a need for an evaluative arm to be incorporated into the program. All these questions, yet one thing is certain. That certainty is the fact that RHD has to be solved by Aboriginal persons not an ABC Four Corners program nor a Coronial investigation.
Thank you for highlighting this and for your informed analysis, Rosalie.
You’ve encouraged me to think about one aspect of the tragedies. The Coroner said that the Aboriginal people visiting the hospital had more accurate (oral) records of patient visits than the hospital records did.
I believe it. Anyone who’s worked in a remote setting can see how that happened.
Time to properly document clinical encounters is often not factored into a clinician’s workload, putting the patient (physically and emotionally) and clinician (medico-legally and emotionally) at risk.
Particularly when interaction is cross-cultural, practitioners need to the time and cultural safety to be able to reflect and communicate what has happened with a client. I’m talking about a safe medical culture.
Despite the excellent educative work being done in RHD prevention and treatment in the Top End (thank you!), many visiting health providers are not aware of the illness. Good written and verbal communication across the team helps fill the gaps.
We all have our strengths and weaknesses. A safe team is one where people don’t dismiss what they don’t know e.g., by ignorantly dismissing concerns of a patient and/or their support people and then not even documenting the interaction.