Promoting the health of people with disability during the pandemic

1. OPA endorses the use of human rights-based frameworks for decision-making, highlighting the importance of supported decision-making principles and practices.

OPA recommends the six ethical principles for decision-making developed by leading Australian experts and published in their statement of concern, COVID-19: Human Rights, Disability and Ethical Decision-Making.

OPA notes that it may not always be possible to attain the “free and informed consent of the person with disability” for medical treatment where they have a cognitive impairment. Hence, OPA adds to this framework the importance of following established supported decision-making principles and practices in circumstances where obtaining a person’s free and informed consent without support is not possible.

2. OPA notes that a medical resources crisis would result in the need for additional guiding principles, including one that is not usually present in medical treatment decision-making.

A health system crisis sees a completely new ethical principle enter the frame, one which does not, and should not, normally apply to medical decision-making. Extreme resource scarcity creates resource allocation decisions that are universally acknowledged as difficult and challenging and without a clear moral answer. Ethical responses to this scenario seek to achieve the ‘greatest good’ with the resources that are available, acknowledging that ‘business as usual’ will result in a greater number of deaths overall and so should be avoided.

Hence, during such a crisis OPA supports an alternative but complementary set of ethical principles: fairness, duty to care, duty to steward resources, transparency, consistency, proportionality and accountability. Noting that the fairness principle incorporates the disability-specific principles outlined above.

3. OPA acknowledges the additional and disproportionate risks of health system crisis for people with disability and older people.

While COVID-19 already is known for the greater toll it takes on the elderly and people with comorbidities1, OPA notes that determining ‘a good quality of life’ has a subjective component, and this bias can reduce access to medical treatment for people with disability (especially for people with cognitive impairment) even in non-crisis periods. This bias will be much more dangerous in a time and resource-pressured situation.

4. The state has an ethical obligation to avoid having to make ‘crisis’ decisions by implementing preparation and mitigation strategies.

In working together to flatten the curve of the pandemic trajectory and prepare for potential spikes in COVID-19 cases, Australia’s Federal, State and Territory governments have successfully met this ethical obligation to the population. OPA hopes the governments of Australia can continue to be successful in this.

5. The state has an ethical obligation to avoid front-line medical personnel having to make resource-crisis decisions without support.

If the nation’s health system is overwhelmed and treating clinicians are left to do their best with the resources they have to hand, not only will they experience moral injury (from making decisions about who should have a chance at life), they may also bring unconscious biases to their decision-making which may disadvantage people with disability.

The state must ensure that, in the event of a resource crisis, an ethical decision-making system is instituted that removes critical resource allocation decisions from the treating team. 

6. The state has an ethical obligation to mitigate the impacts of overarching public health strategies on the wellbeing of vulnerable groups.

When strategies are devised to protect the population as a whole, those laws and policies will likely have unintended consequences for people with disability. The state must consider the implications of COVID-related strategies for people with disability and older people (as well as other known disadvantaged groups) and act to mitigate negative impacts.

7. The state has an ethical obligation to proactively target resources to prevent COVID-19 outbreaks among vulnerable groups.

More can be done in Australia to proactively target resources to prevent COVID-19 outbreaks among vulnerable groups, particularly those experiencing the dual threat of comorbidity or advanced age and congregate living. To date, Australia’s prevention strategies have focused on the health system; there is good reason now to expand those strategies to encompass aged care facilities and congregate care for people with disability (who often have comorbidities).

8. The state has an ethical obligation to respond to outbreaks in congregate care settings.

Given the risks COVID-19 poses in congregate care settings, the state should be ready to respond to suspected and actual outbreaks with appropriate supports and resources. 

1 National Voices, Joint Statement on COVID-19 (UK)