Unravelling supported decision-making

Introduction

Supported decision-making is gaining a lot of attention across the aged care and disability sectors. The draft of the new aged care legislation and the Disability Royal Commission have both proposed reforms introducing supported decision-making. The principle is already embedded in several states, as part of laws about guardianship and administration.

Despite its popularity and the flurry of reform proposals, it’s not always clear what supported decision-making is and what it means for the everyday lives of people with decision-making difficulties. These difficulties may be a result of dementia, intellectual or other type of cognitive disabilities.

In our research at La Trobe University, we found unanimous endorsement of supported decision-making from advocates, family members, service providers and people themselves who have difficulty making decisions. They considered supported decision-making important because it:

• puts rights into practice

• safeguards people by making decision support intentional

• is guided by principles and good practice

• increases self-esteem and confidence

• extends change in social attitudes about people with decision making difficulties.

This article introduces supported decision-making and considers:

• the paradigm shift it entails and its underlying values

• the ways it is understood

• the way it has been embedded into legal frameworks in Australia

• what good practice looks like

• the needed safeguards.

Supported decision-making means a shift in values

Supported decision-making reflects new ways of thinking about autonomy and self-determination. It recognises that people are interdependent: we all rely on the advice and support of others when we make decisions. This is known as ‘relational autonomy’, which means we exercise our autonomy with others rather than on our own.

Supported decision-making represents a shift in values that occurred when Australia signed the United Nations Convention on the Rights of Persons with Disabilities in 2007. The convention recognises that all people with disability or decision making difficulties have the same rights as everyone else:

• to make or participate in making decisions about their own lives

• to participate in society

• to get the support they need to do these things.

Importantly, the rights paradigm shifts the focus away from a person’s capacity to fully understand everything about a decision and onto the support a person needs to understand a decision, express their preferences about options and participate in decision-making.

Nevertheless, there is still a long way to go in changing the way people think about decision-making, particularly in the health and aged care systems, where issues of capacity still dominate.

Two approaches to supported decision-making

The binary approach

Most people understand supported decision-making as a simple binary between ‘supported’ and ‘substitute’ decision-making. We call this the ‘binary approach’.

It’s very straightforward and suggests that some people can make decisions for themselves if they get the right support. The supporter provides information and helps the person to understand the options and consequences, think through their preferences and make the decision – so the person makes the decision themselves, not the supporter.

In this approach, having support enables a person with decision-making difficulties to reach the capacity threshold needed to make a decision. If the person does not fully understand or cannot make the decision, even with support, then a supporter will make it for them, based on the supporter’s view of what is best. This is what guardians have done in the past: made a decision in the best interests of the person. This is known as ‘best interests substitute decision making’.

As you can imagine, the binary approach to supported decision-making leaves out people who have severe difficulties making decisions, such as people with profound intellectual disabilities or advanced dementia, who even with support are never likely to fully understand or make a decision.

Below summarises the binary approach to supported decision-making.

The principled approach

In contrast, the principled approach to supported decision-making includes all people regardless of the severity of their decision-making difficulties. This approach sees supported decision-making as a continuum: sometimes a person can make a decision with support and other times they may not be able to – it will depend on the combination of the decision, the person and the particular time.

For example, if the person is in a quiet room and they are having a good day, they may be able to make a decision such as choosing what they’d like to eat from the available options. However, if the room is noisy, or if they are tired, they may not be able to manage that same decision. Small decisions like this are often the ones that are overlooked, as they may not seem important to other people – yet they are very important for the person’s quality of life.

In a principled approach, the person’s preferences are always at the centre of the decision, whether it is made by themselves or by a supporter. The role of the supporter may be to provide information and help the person understand the options. Alternatively, it may be to help the person experience the various options and interpret the person’s preferences from their reactions to those options and the knowledge they and others have about the person. The only time a person’s preferences are overridden by a supporter is if their rights to autonomy and safety clash and respecting their preferences would put them in danger of severe, long-term harm.

Below summarises the principled approach to supported decision-making.

Current legal frameworks for supported decision-making

People with decision-making difficulties need to make many decisions every day, such as what to wear, what to eat, how to spend their time and who to spend it with. Family members or paid staff in care services often provide support with these types of decisions. Increasingly, they are expected to use a principled supported decision-making approach rather than make a ‘best interest’ substitute decision.

Decision-making also happens in more formal contexts, such as the health care or banking systems, or about what are often seen as ‘bigger’ matters such as where to live, or what treatment to have, or what to buy. For these types of decisions, a supporter may need to have legal authority to provide support.

In the past, individuals’ rights to make decisions have often been removed and ‘best interest’ substitute decision-makers appointed in the form of guardians or administrators. This tendency is changing. In some states, even if a guardian or administrator is appointed, the law requires that they apply the principles of supported decision-making and ensure that decisions they make reflect the person’s preferences – unless, in exceptional circumstances, there a clash between the person’s rights to autonomy and safety. This is the case in Tasmania, Queensland and Victoria at present.

Importantly, too, the Disability Royal Commission recommended that the term ‘decision-making ability’ should be used instead of ‘capacity’. The Commission also recommended that the support provided to a person must be considered before an assumption is made that they do not have decision-making ability.

Frameworks for supported decision-making often refer to ‘will and preferences’, and these terms have slightly different meanings. ‘Will’ refers to a person’s values or long-term goals for their life, whereas ‘preferences’ is more about the choices they want to make at a particular moment in time.

There is no agreed set of principles for supported decision-making, but figure 2 shows the principles recommended by the Australian Law Reform and the Disability Royal Commission.

Proposed principles for supported decision-making

Australian Law Reform Commission Report (2014) – recommended National Decision-making Principles

1. The equal right to make decisions. All adults have an equal right to make decisions that affect their lives and to have those decisions respected.

2. Support. Persons who require support in decision-making must be provided with access to the support necessary for them to make, communicate and participate in decisions that affect their lives.

3. Will, preferences and rights. The will, preferences and rights of persons who may require decision-making support must direct decisions that affect their lives.

4. Safeguards. Laws and legal frameworks must contain appropriate and effective safeguards in relation to interventions for persons who may require decision-making support, including to prevent abuse and undue influence.

Disability Royal Commission (2023) – recommended Supported Decision-making General Principles

1. Recognition of the equal right to make decisions

2. Presumption of decision-making ability

3. Respect for dignity and the right to dignity of risk

4. Recognition of the role of informal supporters and advocates

5. Access to support necessary to communicate and participate in decisions

6. Decisions should be directed by a person’s own will and preferences and rights

7. Inclusion of appropriate and effective safeguards against violence, abuse, neglect and exploitation

8. Co-design, co-production and peer-led design processes

9. Recognition of diverse experiences, identities and needs

10. Entitlement to culturally safe, sensitive and responsive decision-making support.

Supported decision-making practice

Supporting a person to make decisions can be an onerous and emotionally demanding task that requires skills and takes time. Supporters must put aside their own values and preferences and remain neutral. They may have to manage conflicting interests of others affected by the decision and find strategies to enable the person to take risks. The type of support a person needs to make a decision or express their preferences is not fixed. It is different for each decision and depends on the person, the decision and the context.

The La Trobe Support for Decision-making Practice Framework is the most well-researched and commonly used guide for supporters of people who have difficulty making decisions. Figure 3 illustrates the steps and principles of this Framework.

La Trobe Support for Decision-making Practice Framework

The Framework suggests all decision support has 7 steps, but supporters often go backwards and forwards between these steps. Decision support practice is informed by 3 principles (shown in the centre of the diagram), and supporters use a wide range of individually tailored strategies.

Steps in the decision-making process

• Knowing the person from many different perspectives

• Identifying the decision and its parameters such as when it must be made, who else is likely to be involved, and what decisions have preceded it

• Exploring all the options, thinking as widely as possible and understanding the person’s will and preferences about these

• Refining the decision to take accounts of constraints, such as time, resources, or policies

• Considering if a formal process is necessary, if for example, there are conflicting views about the person’s preferences or whether they should be respected

• Reaching the decision and identifying any associated decisions that need to be made

• Implementing the decision and making sure that other supporters provide the necessary assistance for the decision to be actioned or finding an advocate who can follow through with the person

Individualised strategies

• Exploring options

• Listening

• Finding the right communication strategies for the person

• Checking back the person’s understanding and your understanding of them

• Breaking decisions down into smaller parts

• Experimenting with different experiences

Principles

• Objectivity and reflexivity, remaining neutral and reflecting on one own values and influence

• Commitment to the person’s right to participate in decision-making

• Orchestration, involving others who know the person or who have expert knowledge about the type of decision in the support process

Training resources for supporters about enabling risk and supporting decision-making are freely available online. One example is our Support for decision-making resource, where you can work through 6 modules to help you understand the La Trobe framework. You can also see the Compass Supported decision-making webpage for other resources.

Safeguards

There are many ways of safeguarding people in the context of supported decision-making and ensuring their rights are not abused by others. One of the strongest ways is ensuring other people are watching out for the person – that they have network of people who care about them and are part of their life.

Safeguarding will be helped if support workers and other professionals in service systems develop skills in supported decision-making as part of their training or continued professional development, and if supported decision-making is included in professional and service standards.

As a last resort, applying to have a guardian or administrator appointed can safeguard a person against misdeeds or abuse of power by informal decision supporters. All Australian states and territories have Public Guardians, Public Trustees and/or Public Advocates who can provide advice to supporters and help safeguard people with disabilities against abuse. For more information about this, visit the Guardianships in Australia section of Compass.

Professor Christine Bigby, Director, Living with Disability Research Centre

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