The concept of a human rights approach to the aged care is not a new one – but it has been brought into sharp focus during the COVID-19 pandemic. We discuss what this means for aged care providers against the backdrop of the Royal Commission into Aged Care Quality and Safety in Australia, taking lessons from similar experiences in the United Kingdom.
The concept of a human rights approach to the aged care is not a new one. Submissions of Counsel Assisting the Royal Commission into Aged Care Quality and Safety (Royal Commission) call for the implementation of a rights-based governance system, led by a redrafting of the Aged Care Act to centre the sector on the rights of older Australians.
In all human rights legislation currently in force in Australia, it is established that human rights are essential, but not unlimited, and can be subjected to reasonable and demonstrably justifiable limits.
Amnesty International's (UK) report titled 'As if Expendable: The UK Government's failure to protect older people in care homes during the COVID-19 Pandemic' (Amnesty Report) examined the UK government's response to COVID-19 in aged care, noting that the refusal to provide access to healthcare, the banning of visitors and even the decision to make a 'do not resuscitate' order, were often made in the absence of input from the care recipient or the aged care facility.
The key to human rights decision-making is placing the person at the centre of the decision and considering how the alternatives available to the residential aged care facility might impact that individual. Such an approach is consistent with the philosophy of consumer-centred care and will support the delivery of quality and safe care to residents. Further, and most importantly, it will support and protect factors that have been central to the enquiries of the Royal Commission, namely the need for a consumer-centred approach to aged care, and affording aged care consumers dignity of risk.
These human rights issues have been brought into sharp focus during the COVID-19 pandemic. No more so, than in relation to the transfer of COVID-19 positive residents to hospital and the restrictions that have been placed on visiting residents. These decisions require an aged care provider to balance the individual resident's rights, their preferences, and their personal right to dignity of risk, against the rights of the other residents and workers in the service to be kept safe and free from exposure to the risk of contracting COVID-19. As much was alluded to in the Royal Commission's report on COVID-19:
“Maintaining the quality of life of those people living in residential aged care… is just as important as preparing for and responding to outbreaks. Residents’ entitlement to quality of life does not change in an emergency, although how this can be achieved does. If anything, quality of life becomes more important...the restrictions on visits have had…serious consequences”
Royal Commission into Aged Care Quality and Safety, Aged care and COVID-19: a special report
The Amnesty Report highlights a number of factors from the COVID-19 response in aged care in the UK that are similar to those that have impacted the aged care sector in Australia, including:
The Amnesty Report identifies two factors that can, and should, be analysed from a human rights perspective, access to healthcare, and suspending visits to aged care facilities.
The circumstances relating to hospital transfers in the UK are markedly differ to those in Australia. It is reported that from early in the pandemic:
The Amnesty Report states that the decision of the NHS to discharge patients into care homes was 'among the most crucial decisions that adversely affected care homes across the country', with a number of care homes reporting that they did not have COVID-19 positive cases until these transfers had occurred. The policy that residents from care homes should not be admitted to hospital during the pandemic resulted in approximately 11,800 less admissions.
The Amnesty Report identifies that the right to life, and consequently the right to access health services, is protected by the European Convention on Human Rights (ECHR) as well as enshrined in domestic law in the UK Human Rights Act. It also notes that preventing someone from accessing health services, on the basis of a factor such as a person's age, is arguably discriminatory. Further, both the United Kingdom and Australia are signatories to the International Covenant on Economic, Social and Cultural Rights (ICESCR) which protects the right to health.
In Australia, the question of access to healthcare has not been centred on a government policy of preventing transfer to hospital, but rather, on when it is appropriate to transfer a resident suspected or confirmed to have COVID-19 from a residential care facility to hospital. When considered from a human rights perspective, the question of when to transfer a resident to hospital draws a number of competing human rights into the decision-making process:
1. The right of the COVID-19 positive resident to remain in the facility
The right to Freedom of Movement is a common human right, included in each of the state-based human rights acts in Australia. Generally speaking, Freedom of Movement includes the right of people to choose where they reside, and accordingly, residents have the right to remain in the facility, if they so choose. Arguably, the protection of such a right is the reason that the security of tenure provisions in the Aged Care Act 1997 (Cth) and User Rights Principles 2014 (Cth) exist.
2. The right of the COVID-19 positive resident to access health services
In many jurisdictions, including the UK, the right to access health services arises as a 'positive' obligation alongside the right to life. The right to life is the right of a person to not be arbitrarily deprived of life and accompanying this is the obligation on the State to not interfere with the health of an individual by, for example, denying them access to health services, unless there is a justification for doing so. Accordingly, should a resident's health justify it, and particularly where the resident desires transfer, that resident has a right to access health services, such as the public hospital system.
3. The rights of other residents and workers not be infected with COVID-19
Just as resident's suspected or confirmed to have COVID-19 have human rights, so do all of the other residents and staff within a facility – the right not be exposed to COVID-19.
The identification of these rights facilitates a thorough analysis of the risks involved in allowing a COVID-19 positive resident to remain in a facility, while also keeping the residents of a RACF at the centre of the decision-making process.
The early transfer of COVID-19 positive residents to hospital has been demonstrated during the pandemic in Australia, to improve the ability of the aged care facility to manage and respond to an outbreak by reducing the viral load. This step, accompanied by comprehensive testing and strict infection control is arguably essential to an effective COVID-19 outbreak response. It is important however that embedded in this response is a risk assessment, with the resident at the centre of the decision-making. The initial question in any human rights consideration must be the wishes of the person whose rights are being impacted. Does the infected resident wish to go to hospital? If so, the service should facilitate that transfer. If not, is it possible to effectively isolate the resident within the service while still keeping other residents safe? Will the facility have sufficient staff to cater for the resident while they are isolated? If the COVID-19 positive resident cannot be safely isolated at the facility, then it will be necessary to balance their desire to stay in the RACF against the right of the remaining residents to remain COVID-19 free.
Equally contentious is the 'lockdown' of facilities to visitors. Early in the pandemic in the UK, visitors were prevented from visiting care homes in an effort to prevent the transmission of COVID-19. The Amnesty Report notes the 'devastating impact of prolonged isolation' and describes the deterioration that some care home residents experience from long periods away from family members and loved ones. The Amnesty Report continues that 'restrictions placed on visits to care homes … and which are not based on individual risk assessment are disproportionate and may be discriminatory. As such, these restrictions violate care home residents right to private and family life'.
The decision to lock down a facility, or limit visitors should be subject to a risk assessment. Central to this should be the resident, and their right to ongoing, meaningful contact with their families and loved ones. Of course, this right to meaningful engagement with families and loved ones must be weighed against the right that each resident has to be protected from COVID-19, and will need to be considered on a case by case basis, in light of a range of factors and must align with the Directions in force in each State and Territory at the time the decision is being made.
As the Royal Commission comes to a close and prepares its final report, the aged care sector needs to prepare for significant change. A central component of the recommendations of Counsel Assisting, is a new Aged Care Act, grounded in human rights principles. Embracing a culture of human rights and including this culture in decision-making across the organisation will help aged care providers to draw care recipients to the centre of decision-making, increasing the quality of care and outcomes for care recipients, and prepare approved providers for the possibility of widespread change in a post-Royal Commission aged care sector.