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Implementing rights-based practice

30th October 2018

It is time aged care caught up with the disability and mental health sectors and adopted a rights-based approach, writes Dr Catherine Joyce.

Current developments in aged care policy place an increased focus on consumer choice and control. In this context it has never been more important for aged care providers to understand how to maximise the freedom of choice available to residents of aged care facilities, while also meeting their duty of care.

The disability and mental health sectors have a long tradition of rights-based practice, but the aged care sector is yet to adopt these principles.

Many providers still use old-style models of care which can be disempowering and condescending to care recipients. Residents’ rights may be at risk of infringement in relation to elder abuse, as well as other issues such as locked facilities, use of restraints and breaches of privacy.

Rights-based approaches provide a framework for aged care providers to protect and promote the rights of residents in aged care facilities, strengthening their freedom of choice and ultimately enhancing their quality of life.

At its heart, a rights-based approach to aged care is person-centred. It places the recipient of aged care services at the centre of practice. More specifically, it emphasises their rights – first and foremost their right to be an active participant in decisions which affect them.

It involves service providers working in collaboration with residents to determine care and services based on their rights, values and preferences as well as their needs. We know that autonomy is central to quality of life. Having control over decision-making contributes to a good quality of life – regardless of what you decide.

A needs-based approach may also be person-centred in the sense that the person’s needs are the prime consideration. But in contrast to a rights-based approach, the provider retains the decision making power about how identified needs will be met, as the expert. Individual preferences and choices, and the right to participate in decisions may not be respected.

Another approach, traditionally common among faith-based providers, has been characterised as a “charity approach”, where the care recipient is seen as a “deserving victim”. While the person’s problems are the centre of focus and the care may be relationship-focused, the response is a paternalistic one in which all the decisions are made by the provider.

So the matter of how decisions are made is central to protecting and promoting the rights of care recipients. Active engagement of residents is a fundamental requirement. The new single Aged Care Quality Standards, which come into effect in 2019, place more emphasis on this than previously. They clearly indicate that aged care providers are expected to recognise the need to balance risk with autonomy and choice, and actively guide residents through decision-making in relation to these.

Challenges to adoption

Few people would disagree with the principles of a rights-based approach. So what makes it difficult to enact these principles in practice? Two key issues are meeting regulatory requirements and managing family expectations.

Providers have legal obligations under regulatory regimes to meet their duty of care to their residents. This encourages a risk-averse approach, which gives precedence to safety and protection rather than other considerations such as choice and quality of life.

Adopting rights-based approaches that prioritise autonomy, dignity and quality of life rather than protection and risk minimisation, can be challenging in the context of perceived risks of non-compliance with regulations.

Families are routinely involved in decisions about aged care residents and can be quite vocal in expressing their preferences and expectations to staff. They also have a tendency towards protection, safety and avoidance of risk, which arises from a number of contributing factors, including the emotional burden of caring, adopting a best-interests model and acting as a substitute decision-maker.

Feelings of loss, guilt, love and duty can make it difficult for family members to distinguish between their own preferences and those of their relative who is receiving care, leading to family members being unable to recognise that their desire for safety for their relative may not be given the same priority by the relative themselves.

A best-interest approach to decision-making, which is about doing good and avoiding harm, is also likely to lead to a more risk-averse approach.

Finally, adopting a substitute decision-maker role, such as making decisions on behalf of residents, rather than engaging with them in the decision, in combination with the above factors, is also likely to lead to more risk-averse decisions.

The alternative approach to family member decision-making under a rights-based approach involves the principles of substituted judgement and supported decision-making.

As set out in the Australian Law Reform Commission’s National Decision-Making Principles, this involves focusing the decision on what the person wants, or is likely to want (rather than on “best interests”), and consciously seeking to understand their will, values and preferences.

This means engaging the person in the decision-making process directly wherever possible, even where they may have a cognitive impairment. It is based in part on understanding that capacity is decision-specific rather than global.

Even if they do not have capacity to participate in major decisions, residents with cognitive impairment can and should be engaged wherever possible in the everyday decisions of their lives. In the event that what a person would likely want is not known, decisions should be based on promotion and safeguarding human rights and the option which is least restrictive of those rights.

Overcoming challenges

Providers can take actions to address these challenges and adopt rights-based approaches.

They can educate their staff about dignity of risk and rights-based practice. They can cultivate a culture of which prioritises the person, their rights and their quality of life, as opposed to a box-ticking, task-focused approach. They can also develop and implement specific policies and procedures for elder abuse, decision-making and so forth.

Providers can empower front-line staff to support residents to make decisions and take informed risks. Staff need to be confident that management will ‘have their back’ when they support residents to take an informed risk.

Staff can be recruited and trained to ensure they have the right skills and mindsets, which include:

  • keeping the resident’s rights and quality of life as the primary consideration
  • being able to manage family expectations
  • empathy and problem-solving to the process of making complex decisions with residents.

There are a growing number of resources to support providers in this endeavour, including in relation to elder abuse (seniorsrights.org.au), supported decision-making (sydney.edu.au) and the new quality standards (aacqa.gov.au).

A person-centred, rights-based approach provides the best chance of ensuring that residents’ rights, choices and freedoms, and ultimately their quality of life, remain the paramount concern.

As seen in Australian Ageing Agenda.