26 March 2020
By Catia Malaquias
As the COVID-19 global pandemic accelerates, countries are urgently planning for how scarce medical resources, like intensive care beds and ventilators, will be allocated – rationed – or, by corollary, denied to desperately ill patients. Once allocated – scarcity means decisions will also inevitably extend to withdrawing and reallocating resources for other patients.
The clinicians making and orchestrating these decisions of ‘life and death’ will enter territory uncharted by their experience to date, and their professional associations are scrambling to provide them with ‘guidance’.
It is presently accepted that COVID-19 primarily places the older members of our communities and those with underlying health conditions at higher risk of serious illness and death. People with disability are more likely than the general population to have health issues and compromised immunity and, accordingly, to be at ‘high risk’.
The question of whether to intubate or ventilate a patient with a disability in intensive care, particularly in competition with a non-disabled patient needing the same care and resources, collides the following perspectives of disability:
- the ‘medical model’ perspective of disability, that characterises disability as a devaluing deficit inherent in the individual; and
- the ‘social model’ perspective of disability articulated by people with disabilities (as a challenge to the ‘medical model’), that explains that disability and its marginalising barriers arise not from the person’s physical or mental impairment but from how society stigmatises and discriminates against them.
Inevitably, perspectives on ‘quality of life’ and ‘quality of outcomes’ are also heavily influenced by the relevant viewpoint – of the clinician – or – the disabled person.
‘Utilitarianism’, the dominant bioethics philosophy centred on actions that maximise ‘socially positive and productive’ outcomes, is a ‘cousin’ of the philosophy of eugenics that was used to segregate, institutionalise and involuntarily euthanase people with disability. Arguably, the dehumanising and devaluing legacy of eugenics strongly persists in the medical community, still trained on the ‘medical model’ in its application to disability, including its prejudicial assumptions.
While from an ableist or unconscious bias perspective, the questions of ‘quality of life and outcomes’ proceed from a low expectations base, the reality is that for many people with disability, in particular intellectual disability, their subjective enjoyment and quality of life is frequently higher than that reported – assumed – by non-disabled people. In any event, quality of life is often an outcome affected by prejudice and discrimination rather than inherent or individual characteristics.
The UK National Institute for Health and Care Excellence (NICE) recently released ‘COVID-19 Rapid Guideline’ [NG 159] dealing with COVID-19 and critical care, which recommended prioritising critical care resources based on the ‘Clinical Frailty Scale’:
“Rapid NICE guidance … produced in response to the COVID outbreak clearly outlines the importance of identifying and grading frailty using the Clinical Frailty Scale. The purpose is to identify patients who are at increased risk of poor outcomes and who may not benefit from critical care interventions.”
On a scale from 1 (very fit) to 10 (terminally ill), at 7 were the “severely frail” described with a person in a wheel chair for a graphic, with the descriptor:
“[people] ‘dependent for personal care, for whatever cause (physical or cognitive).’”
This descriptor and categorisation, that effectively deprioritised a large portion of the disabled community from receiving critical or intensive care for having a disability (e.g. an intellectual disability) that bore no relevance to their general health or ‘quality of life’, was rightfully criticised as ableist and discriminatory.
NICE acknowledged the correctness of the criticism and amended the ‘rapid guidelines’ on 25 March 2020 to clarify that the Clinical Frailty Scale should not be used in prioritisation in relation to ‘stable long term disabilities’.
On 16 March 2020, the Australian and New Zealand Intensive Care Society (ANZICS) released ‘Version 1 of its COVID-19 Guidelines. ANZICS’ guidelines take a less prescriptive approach than the NICE ‘rapid guidelines’, but are nevertheless open to ableist bias in ‘quality of life’ and ‘quality of outcomes’ considerations for people with disability in providing:
“In the event of an overwhelming demand for critical care services we recommend the following principles should be considered for admission:
- The decision-making process [in which the clinical judgement of the treating Intensivist is paramount] should be open, transparent, reasonable and inclusive of patients, their families, ICU and non-ICU staff.
- Senior Intensive Care medical staff, recognising available resources, should consider the probable outcome of the patient’s condition, the burden of ICU treatment for the patient and their family, patient’s comorbidities and wishes, and likelihood of response to treatment.”
Neither the UK NICE ‘rapid guidelines’ or ANZICS’ guidelines for COVID-19 admissions to intensive care recognise the human right of people with disability to health care on an equal and non-discriminatory basis. Article 25 (Health) of the United Nations Convention on the Rights of Persons with Disabilities, to which both the UK and Australia are signatories, provides:
“States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. …. In particular, States Parties shall:
a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, …;
d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.”
The United States is not a signatory to the UN Convention. However, US federal law also qualifies the capacity to rationalise medical care on the basis of disability and age. In a publicly released legal opinion dated 23 March 2020, Limandri & Jonna LLP advise:
“Short Answer:Federal law requires that decisions regarding the critical care of patients during the current crisis not discriminate on the basis of disability or age. In this respect, anticipated longevity or quality of life are inappropriate issues for consideration. Decisions must be made solely on clinical factors as to which patients have the greatest need and the best prospect of a good medical outcome. Therefore disability and age should not be used as categorical exclusions in making these critical decisions.
The present pandemic may be used to try to justify the ‘hard decision’ to issue policies rationing care on the basis of disability or age. Doing so, however, would violate federal law regarding invidious discrimination. It will open up the purveyors of those policies to legal liability which will likely be exploited.”
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has today released an important and much needed ‘Statement of Concern’ in relation to the COVID-19 pandemic for people with disability. The Statement rightly begins with Australia’s human rights obligations:
“The United Nations Convention on the Rights of Persons with Disabilities states that people with disability have the right to health without discrimination on the basis of disability, including access to population-based public health programmes (Article 25) and that governments also have a duty to take all necessary measures to ensure the protection and safety of persons with disabilities.”
In relation to access to intensive care resources, the Statement acknowledges:
“We have heard from members of the community that people with disability:
- Are worried that discrimination or unconscious bias could impact their access to critical and lifesaving health care during this crisis.”
The ‘Statement of Concern ‘concludes:
“It is within the terms of reference of the Royal Commission to investigate the extent to which people with disability have experienced … neglect … as a consequence of any lack of coordinated action to address their particular needs in this time of crisis.”
The COVID-19 pandemic does not discriminate in its victims on the basis of disability. People with disability have the same right to critical and life-saving health care as any other person, and that right should not be compromised by clinical decisions founded on, or discriminating due to, disability and consequent ableist assumptions as to ‘quality of life’.
We welcome the Royal Commission’s statement and interest in the impact of the COVID-19 pandemic on people with disability and the actions of disability organisations and advocates in Australia and around the world in bringing these issues to light at this critical time.