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Tom Clonan Ireland's ICU guidelines for Covid-19 must safeguard people with disabilities

Rationing of critical care during any coronavirus surge must not happen at the expense of the most vulnerable, writes Clonan.

IRELAND IS ENTERING the third week of restrictions related to the Covid-19 pandemic.  From today, An Garda Síochána have been given new powers of arrest and detention to enforce the movement and physical distancing restrictions which will likely be extended by an Taoiseach over the Easter Bank Holiday weekend.

Based on the partial information available to the national Public Health Emergency Team, the numbers of those infected with Covid-19 and those admitted to Intensive Care Units around the state are increasing to a point where there is a risk that our ICU and ventilation resources may be overwhelmed during the ‘surge’ phase of the pandemic here.

We need clear guidance

This rising curve of infection and admission to ICU is consistent with other European jurisdictions such as France, Germany, Spain and Italy.  So far, Ireland has managed to flatten the curve of transmission as a consequence of public compliance with the restrictions around movement, physical distancing and cocooning.  In this regard, our citizens and our frontline medical professionals have been doing the heavy lifting with regard to this crisis so far.  

Unfortunately, we remain vulnerable to the inevitable surge in critical cases.  According to the European Centre for Disease Control – at the outset of this crisis, we had the lowest ratio of ICU beds and ventilators per head of population in the European Union. We also have amongst the lowest ratio of intensive care specialists, respiratory specialists, anaesthetists and other medical specialities in Europe. 

As more information emerges about the patterns of serious illness in Ireland – with clusters of infection in almost 100 nursing homes across the state – we know that certain vulnerable citizens are particularly at risk from this disease here.

These include the elderly and people with pre-existing medical conditions.  My son fits the latter category.  He is an 18-year-old who suffers from a neuromuscular disease that has seriously compromised his lung function.  He is a wheelchair user and is categorised or labelled as ‘disabled’ by the Irish state.  As a family, we are particularly worried about his vulnerability to the disease.  We also have a family member who is a doctor in a front line Dublin hospital.  As a family, on a daily basis, we confront the risk of infection and transmission of the virus to a vulnerable family member.

The stress and worry around this issue are exacerbated by a number of key issues.  Principally, there has been an ongoing issue – three weeks into this crisis – with access to PPE in sufficient quantities to be issued to frontline medical staff.  There has also been an ongoing failure or critical time delay in implementing the best practice testing regime as advocated by the World Health Organization. 

For citizens with a disability however, in Ireland, there are additional, specific concerns when it comes to the rationing of ICU care during the anticipated surge in serious illness. The Irish government recently published a crucial document, namely the ‘Ethical Framework for Decision Making in a Pandemic’. This document deals with the upcoming surge and the steps to be taken when demand for ICU and ventilation resources overwhelms our resources – which were deemed to be the lowest in Europe.

Hierarchy of care

Under the headings, ‘Allocation of Scarce Resources’, ‘Surge Capacity’ and ‘Prioritisation of Medical Care’, the document states that the decision to triage, or ration critical care to some patients whilst denying life-saving interventions to others should be based on the following. ‘Thus the starting point for any rationing decision is to consider which patients are most likely to benefit from the intervention.  Consideration of the patient’s premorbid health status, their will and preferences (if known), the presence of co-morbidities and their frailty status (independent of age) are all relevant in this context’.

This guidance is extremely problematic. The clause, ‘independent of age’ suggests that younger persons with disabilities may be treated less favourably when it comes to the rationing of life-saving resources compared to non-disabled persons in the same health demographic. 

In the UK, the National Institute for Health and Care Excellence (NICE) guidelines – for determining ‘frailty’ in a patient during the Covid-19 crisis – were amended last week in light of concerns for persons with a disability. As I write, in the UK there is an explicit written commitment in their guidance documents that measurements of ‘frailty’ in the decision to allocate ICU or ventilation support in the context of Covid-19 are not applicable to people with stable, long-term disabilities – such as Autism, Downs Syndrome or Cerebral Palsy for example. 

As of the 5 April, the National Medical Director and the Chief Nursing Officer of the NHS have directed that the absolute rights of persons with disabilities be upheld with regard to access to ICU treatment and ventilation in the context of Covid-19 in the context of the rationing of care due to resource scarcity – ‘pursuant to the rights of disabled people, of all ages, as set out in the Human Rights Act (1998), the Mental Capacity Act (2005) the Equality Act (2010) and the United Nations Convention on the Rights of Persons with Disabilities (2006) and the Convention on the Rights of the Child (1989)’. 

At present, the Irish Ethical Framework makes no mention of the rights of persons with a disability for the provision of life-saving treatment.  The Irish document makes a bizarre and anachronistic reference to gender and social class – ‘It is not appropriate to prioritise based on social status, or other social value considerations e.g. Income, ethnicity or gender’ – but excludes an entire category of vulnerable citizens such as my son. 

Ireland, which was one of the last member states within the European Union to ratify the UN Convention of the Rights of Persons with Disabilities in 2018, must immediately amend its Ethical Framework for Decision Making in a Pandemic to explicitly endorse and guarantee the right to life-saving treatment to persons with a disability. 

We must learn from others

Even in Donald Trump’s United States, in the current Covid-19 pandemic, there is an explicit direction from the US Department of Health and Human Services that federally funded health providers cannot ration healthcare based on the disabilities of patients. 

Last week in Washington, they stated, ‘In this time of emergency, care must be guided by the fundamental principles of fairness, equality and compassion that animate our civil rights laws.  As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgements of a person’s ‘worth’ based on the presence or absence of disabilities’.

I am asking the Minister for Health, Simon Harris and Taoiseach Leo Varadkar to immediately amend our Ethical Framework for Decision Making in a Pandemic to explicitly endorse the inalienable rights to treatment of persons with disabilities.  This is consistent with the recent statement of the UN’s Special Rapporteur on the rights of persons with disabilities, Catalina Devandas, stated that ‘Persons with disabilities deserve to be reassured that their survival is a priority and I urge states to establish clear protocols for health emergencies to ensure that when medical resources are scarce, access to healthcare, including life-saving measures, does not discriminate against people with disabilities’. 

I would appeal to the Minister for Health and the Taoiseach to make this clarification or amendment at the next available opportunity or during one of the many scheduled Covid-19 press conferences.

Dr Tom Clonan is a former Captain in the Irish armed forces. He is a security analyst and academic, lecturing in the School of Media in DIT.

You can follow him on Twitter here

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