Among the many issues which have emerged with fresh power for consumers during the COVID-19 pandemic is health ethics. Suddenly the concept of health ethics seemed not something merely to be considered in extremis.   We were recognising then that we might soon all be in extremis.

Within days of the arrival of the pandemic, people began to consider the potentially horrendous dilemma of decisions about the provision of hospital beds, health services and products at a time of overwhelming demand for scarce resources.

That immediate anxiety has passed – for now. The current hiatus in Australia presents us with an ideal opportunity to think through and plan as a community an ethics-based health response to the potential calamity of a new widespread outbreak.

As with the community-informed response to COVID-19 so far, a community-driven approach in building an ethical foundation for the management of any future health crisis offers the best prospect of success for an equitable and effective outcome.

The Consumers Health Forum of Australia and supporters, together with the state and territory consumer organisations, joined with the National COVID-19 Health and Research Advisory Committee and the NHMRC Australian Health Ethics Committee, in a workshop to consider the issues arising from the pandemic and to develop a framework for ethical decision-making in health care for policy and practice.

As part of this process, CHF has developed a Position Statement which summarises the key ethical and policy issues from a consumer perspective.

We state, first and foremost, that Australians have a fundamental right to heath care. Principles of fairness, justice and transparency must apply even when resources are scarce.

The community’s views are a critical ingredient in the development of an ethical decision-making framework that the community will value and trust.

Decisions about whether care is provided and in what form must be informed by the preferences of patients as well as clinical judgement.  Shared decision-making between a health care team and patient --- so that patients are partners in care --- should be standard and supported. 

Decisions based on factors such as age or disability should not be determining factors in the allocation of resources.

In setting the pathway to recovery, we state that the health and welfare of individuals and the community should be valued over the economy when deciding how to navigate through the pandemic.

We urge that every effort should be made to reduce existing inequalities during the response to the pandemic as public health restrictions are inequitably distributed, placing heaviest burden on those in greatest need.

Consumers, with their lived experience and valuable contribution to discussion, must be partners and co-designers in decision-making about the response and recovery planning on COVID-19.  Meaningful involvement of people in rural and remote regions, First Nations Peoples, people with limited access to digital technology and those from diverse cultural and linguistic backgrounds is vital.

Thinking about these ethical issues from a consumer perspective opens up a significant variety of considerations, challenging in both their number, complexity and sensitivity.

Our position paper raises more than 40 topics for consideration, responding to the six themes canvassed by the NHMRC in its Issues Paper.  There is not space here to explore each of these topics, but a summary of the next steps demonstrates the encompassing influence of ethics in health care.

Resource allocation

Development of a national framework for ethical decision-making for policy and practice consistency and transparency is urgently required for incorporation into revised national pandemic plans.  The framework should be guided by outputs of recent forums such as the Queensland Clinical Senate, the Health Issues Centre consumer online forum series and the UN Emergency Response Framework. Where they don’t exist, development of critical care guidelines for hospitals and clinicians is essential.  Support to increase uptake and updating of advanced care directives is needed but must be done without coercion.  Audits of aged care facilities would identify how often the issue of advanced care directives is raised with people and confirm systems are in place to support preparation of directives in line with the individual’s wishes.

Implementation of public health measures

Robust investment in services is needed to ensure equity of access for those most impacted by the pandemic. This should include mental health and social support services, such as family and domestic violence services and community legal centres. There is scope to innovate by applying social prescribing practices and using coordinated and consistent public health messaging campaigns. Research into telehealth is required to better understand its value and utility and to promote it as an adjunct to face-to-face services including by specialists and allied health providers.

Issues faced by health care providers

More mental health supports for clinicians and health care workers are needed as well as looking at relief models to enable clinicians in regional and remote areas to work sustainably with limited support and resources. Improve the supply of PPE and support local manufacture.   Ensure appropriate health services are available, including by means of telehealth and support training for health professionals to maximise communications with consumers by phone and video, while also providing options for physical examinations and assessments to be undertaken safely when needed.

Impact on Aboriginal and Torres Strait Islander peoples and communities

Decision-making and services should be designed and led by local communities and Aboriginal and Torres Strait Islander organisations. Public health messages must be developed in a culturally sensitive and meaningful way. Initiatives that reduce inequalities and discrimination in health service delivery should be encouraged.  This should include support for priority health services during the pandemic.

Research ethics

Develop clear guidelines for how COVID-19 trials can be conducted, balancing assurances of safety and quality with the need to find a vaccine or treatment as soon as possible.  Guidelines should include information for consumers who may participate in trials about any increased risks involved. Inaccurate and misleading statements about treatments should be widely rebutted and corrected to protect consumers.  Assess impact of restrictions on non-COVID research and include consumers in conversations priorities of research in other areas.

Emerging from the pandemic and future planning

Governments should resume and accelerate reform agendas presently ‘on hold’, particularly the 10 Year Primary Health Care Plan and National Medical Workforce Strategy. Meaningful responses to inquiries such as those into aged care and mental health are essential to a pandemic recovery plan.  Ethical consideration will need to be given in consultation with consumers to Artificial Intelligence and clinical governance and quality assurance.  A review of the National Pandemic Plan should include community and consumers input.  They must also be included in discussions about economic recovery planning.  Young people will feel the negative impacts of the pandemic for many years given they are a large proportion of the casual workforce in hard hit sectors and will be vulnerable to psychological, financial and housing stress in the short and long terms.

The scope of this position paper is ambitious.  But what community-minded person could say that any of these proposed measures are not necessary to support an ethical and equitable health system in the event of another COVID wave?