Communicating values is essential to rights-based care

Oct 5, 2022 | Advance Care Planning, Australian Aged Care

It’s great to see the world of healthcare discussing rights-based care so readily. Even as we discuss the systems impact on concepts like rights-based care. As we move into a more individual and person-centred care model in aged care, end-of-life, mental health and disability, ensuring the person receiving the care is respected is paramount.

But how do we move from a theoretical idea to enacting this care in real terms?

The key is understanding the values of the person in front of us. And how it applies to their version of rights-based care. Here’s how

What are the fundamentals of rights-based care?

The bedrock of rights-based care is PANEL:

Participation –

Allowing each individual person an active role in ensuring the choices made about their care reflects who they are and the rights they hold dear. And that means participating in the decision-making process, in articulating what those rights look like, and outlining what it takes to ensure those rights are upheld.

In a care plan, rights-based care participation is preserved via the process of asking the person what good quality care looks like to them. It’s also about making the decisions about goals and what to look forward to as the benchmark of delivering that care.

Accountability –

Talking about rights and values is one thing. Ensuring there are consequences when these rights and values are not respected or upheld is entirely another. To fail to fulfill the obligations as a carer needs both a deterrent and remedy- and that means accountability featuring as part of the process. And this is regardless of whether this failure is systemic or on an individual carer basis.

A care plan is accountability in action. It’s the person wanting and receiving the care making an agreement with themselves to uphold a standard of physical, mental, emotional, intellectual and social wellbeing by using the options available to them. And it also becomes the proof of what the person has asked for from the care provider. When someone articulates what rights-based care looks like to them in a care plan, it is with the agreed understanding that both care provider and individual will work together to make that happen.

Non-discrimination –

To implement anything related to true human rights means to ensure the system, processes, people and situations enacted by the people at any given time are free from discrimination and bias. This is beyond equality of choice or access where all people receive the same or equal access. It’s about ensuring equity, where all forms of discrimination are identified, challenged, prevented and eliminated.

Care plans are essential to ensuring that discrimination doesn’t occur precisely due to the granular nature of the data it collects. If you have someone’s mores, norms, beliefs, rituals and ideals in front of you in a document, you can understand the importance of these elements to the person in front of you. We can move away from neglect or unintentional abuse by learning from people’s self-defining moments.

Empowerment –

If you are going to grant basic human rights, it means all individuals should be empowered to ask for what they want and to refuse what they don’t want. It’s about claiming and exercising the individual rights while also ensuring that the rights of others around them are similarly respected and granted. The ability to participate, discuss and challenge what is available is all part of this process.

A care plan helps the individual to define their treatment line. It creates space to articulate the hierarchy of the things they value the most and creates the conditions to open the door to discussion and disclosure of those values. Even the act of having the conversation about what it is to access rights-based care opens the door to people who may have not realised they have a say in how, when and the ways in which they are cared for.

Legality –

Receiving access to the law and equal protections under that law is a huge part of rights-based care. Access to legal support, protections that deter and prohibit poor behaviours and exploitation, the ability to be heard by the courts, have their rights upheld and protected, and the ability to seek redress or justice if they are not are all part of having an equal standing under the law.

As a rights-based care tool, a care plan is an agreement between the person seeking care and those providing it. As such, it outlines what the two parties have agreed on and what success and failure may look like in the provision of that care. It takes an individual and personal moment and transforms it into something actionable, enforceable and measurable. And that ability to action, enforce and measure is the basis of the legally binding nature of that agreement between two parties.

Great ideas – but how about the practical application?

To understand the person is to understand the individual on a granular level to be able to fulfill those rights. Rights-based care models are no different. To understand what rights you grant a person, you have to see what they see as humane and reasonable treatment from their individual perspective.

This is beyond the right to bodily autonomy or shelter. Or to receive a safe, supportive environment to live, work and play.

That means including their voice in the articulation process because those rights and what is deemed fair and reasonable is influenced by lived experience, beliefs, morals, culture, and education.

This is where the difficulties begin. Unless we have experience systemic issues such as racism or other forms of exclusion as part of our experience of the world, we believe that systems are inherently good. We believe the law protects, that health is there to help us when we are unwell, and that the mental health system is about supportive recovery. People are genuinely shocked when they discover that the law doesn’t always agree with what we as moral, upstanding, relatively ‘good’ people assume it might entail.

The problem that we face isn’t that the law or care fields wish us harm. It’s that they often don’t receive enough information about us as individuals to determine what is personally harmful. Or have the nuance available to cope with the complexity of human need in its entirety. In the absence of detail, an assumed default approach could have the potential to exclude, stress or neglect the individual.

Conversely, if we have been on the receiving end of discrimination, bias, unjust treatment and/or exclusion, our ability to trust the system may be impaired. And this can lead to a belief that what is available exists outside the realm of our own possibility. For example, if you have grown up poor and Indigenous in Australia in the outback, your ability to access and rely on medical services to help you manage disability or mental health conditions is going to be far less than a white Australian living in an urban area. And any services you do receive may not necessarily reflect your culture, language, health goals or spiritual beliefs.

While the system may not wish to harm an Indigenous person, it may do so by not specifically addressing the cultural norms, mores and language required to articulate those values well enough to promote inclusion, safety and respect. It may also default to beliefs and bias that are painful, harmful or exclusionary. And that’s without considering that due to the nature of systemic exclusion, many Indigenous Australians require far more lead time to grow the trust required to fully disclose health problems, mental health issues and/or care requirements.

What could be deemed as a failure based on initial consultations loses the potential to mature into a healthy, practical and supportive care relationship because the relationship doesn’t consider the additional time required to address issues related to discrimination and empowerment on the individual’s own timeline. Assumptions and prejudices may similarly limit diagnostic abilities or colour reading of test results. Treatments may be inaccessible through cost, culture or even physical access to resources.

Yet, rights-based care could be achieved if the values of the individual were taken into account. For example, their desire to meet with someone who reflects and understands their cultural needs. Or if this is not available, to take additional time to foster the relationship and build trust that the system normally wouldn’t allow for.

And the same is true for people outside particular cultural influences.

We’re talking about examining the inner workings of another human being and allowing their lived experience to define their goals for the future. As well as outline what it normally unspoken so that choices can be made with that person – or if they lose capacity – for that person with a reasonable degree of certainty.

By providing care plans, we have the ability to define what is and isn’t acceptable treatment, social interaction, and essential to physical, intellectual, social, mental and emotional wellbeing.

And that protects against direct abuse, neglect and unintentional abuse by providing a reference point for all involved.

Want to find out more about care plans in relation to rights-based care? Get in touch today.


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