Concerns over disability & ethical decision-making during COVID-19

Four leading UNSW academics have joined other top experts across the country to call for human rights principles to “underpin ethical decision-making relating to COVID-19”.

An absence of these principles, they say, could put the human rights for people with disability at risk.

These concerns relate to the directives, protocols and guidelines that will determine decision-making in the context of life-saving medical treatment and COVID-19.

“We are concerned that any increasing demand on critical health treatment and intensive medical care will require decisions to be made about life-saving treatment that could seriously undermine the rights of people with disability,” Rosemary Kayess says.

Whilst Ms Kayess –  a Senior Research Fellow at UNSW and Vice-Chair of the United Nations Committee on the Rights of Persons with Disability – welcomes the inclusion of disability in the Australian Health Sector Emergency Response Plan, she says that more still needs to be done “to protect human rights”.

This issue is noticeable internationally, the signatories say, where health care systems are currently under greater strain than in Australia.

The international experience shows that “medical decision-making protocols demonstrate an underlying, pervasive and often unquestioned devaluing of people with disability”, or ‘ableism’, UNSW Professor of Bioethics Jackie Leach Scully says.

“We are concerned, along with all people with disability, about similar ableist practices and protocols being replicated in Australia.”

These issues are further exacerbated by the higher risks people with a disability face from COVID-19, particularly for the elderly with disability, First Nations people with disability, or those with chronic health conditions and co-morbidities.

“Indigenous peoples have a higher risk of contracting the disease, particularly vulnerable are those living in remote areas,” UNSW Professor of Law and Pro Vice-Chancellor Indigenous, Megan Davis says.

“This is particularly acute for Aboriginal and Torres Strait Islander peoples with disabilities.”

Due to this, the experts say nationally consistent human rights principles and standards need to underpin any decision-making frameworks to ensure the protection of rights of people with disability.

The signatories propose six human rights principles for ethical decision-making: 

1. Health care should not be denied or limited to people with disability on the basis of impairment.
2. People with disability should have access to health care, including emergency and critical health care, on the basis of equality with others and based on objective and non-discriminatory clinical criteria.
3. Health care should not be denied or limited because a person with disability requires reasonable accommodation or adjustment.
4. Health care should be provided on the basis of free and informed consent of the person with disability.
5. Health care should not be denied or limited based on quality of life judgements about the person with disability.
6. Ethical decision-making frameworks should be designed with close consultation and active involvement of people with disability and their representative organisations.

The Statement of Concern was commission by People With Disability Australia (PWDA) and other key disability organisations in Australia.

UNSW Signatories:

1. Ms Rosemary Kayess, Senior Research Fellow, Social Policy Research Centre UNSW, Vice-Chair, United Nations Committee on the Rights of Persons with Disabilities, 2019 Australian Human Rights Medallist