Will and preference: a context for further debate

As a social scientist, I’ve had a long interest in finding better ways to support older adults in making decisions about their lives. I believe the will and preference concept has advantages over existing approaches, however further discussion and debate is needed, so it can be understood and confidently applied in different settings.

First, a short history of the emergence of the will and preference concept. Across the past century, our society’s response to people with cognitive disabilities has evolved. For most of this time, the dominant approach has been “substitute decision-making”, in which a person – sometimes known as a guardian, attorney or administrator – is authorised by a court, tribunal or enduring appointment, to make personal, lifestyle, healthcare and/or financial decisions about someone else’s life.

While there are protections – for example a formal determination that the person lacks “decision-making capacity” before activating the power – this remains a delicate area of medico-legal practice with significant human rights implications. Many older adults fear cognitive changes due to conditions like dementia or acquired brain injury may result in them losing the right to make their own decisions.

Different jurisdictions have adopted different standards for how substitute decision-making should be done. For example, across America the “substituted judgment” standard requires substitute decision-makers to “stand in the person’s shoes”, and make the decision the person would have made, based on the available information.

The United Kingdom has tended towards the “best interests” standard, requiring substitute decision-makers to promote the individual’s interests, usually framed in terms of safety, financial security and broader wellbeing. In Australia, some states and territories use substituted judgment, and others use best interests standards.

In practice both approaches have problems. While substituted judgment is more consistent with human rights, it can be hard for substitute decision-makers to demonstrate how they are applying the person’s values, especially in the absence of documented preferences.

The best interests approach is more readily held to an objective standard, for example in a decision about maximising a person’s financial estate during sale of assets, however it is hard to apply when the decision is more personal or values-based.

The will and preference approach must recognise that not all preferences are created equally

The emergence of the will and preference concept has come largely from the disability sector, where advocates have noted challenges in applying these principles for people with disabilities. For example, some people with lifelong disabilities and significant support needs may never reach a level of independent function that enables autonomous decisions; this is problematic for the substituted judgment standard. Advocates have also shown how the vagueness of the best interests standard has enabled human rights breaches, particularly in institutional settings.

The will and preference language has been adopted in human rights treaties, which were developed mainly with reference to people with lifelong, developmental disabilities. With this language now also adopted in the incoming Aged Care Act it is timely to consider implications for people with a life history of independent decision-making, along with emerging decision-support needs.

It is simple enough to think of will and preference as reflecting “what a person wants”; particularly when their preferences are consistent over time. But in the real world things can be more complex.

In her recent article, Theresa Flavin’s depiction of will and preference as two separable components is useful.

A person’s will draws on rational, deliberative mental processes and ties to their longer-term goals and values. Preference on the other hand would be the impulses, desires or behaviours in response to emotional, sensory or physiological aspects of a person’s experience.

This separation aligns with decision-making science, and it’s not just relevant for people living with dementia. A long history of research in cognitive psychology shows that while humans are capable of rational, deliberative thought, real-world decision-making is prone to biases and can be swayed by emotions, sensations or physiological processes, as well as unconscious processes.

We can probably all relate to having a longer-term goal of achieving better health through a diet and exercise program thwarted by momentary temptations to over-indulge at the restaurant, a few drinks at the bar and finally missing the morning gym session by sleeping in. For those with the ability to reflect on their actions, and refocus on a longer-term goal, this can be just a temporary lapse. For those with cognitive disabilities who face challenges in recalling past behaviour or integrating these with longer-term goals, these mismatches can lead to  challenges in providing appropriate, responsive care.

As Flavin’s article points out, both will and preference are “part of us.” Our full personhood includes both our goals and values, arrived at through rational and deliberative processes, and also our more momentary responses to emotional, sensory or physical experiences. Conditions like dementia can impact on these mental processes. In the advanced stages of dementia, a person may not be able to recall or reflect on their past behaviour, or may have difficulties in thinking ahead.

The will and preference approach considers both aspects of a person’s decision-making in formulating an approach to care. Hence it could be thought of as more disability-neutral than the substituted judgment approach, which can over-emphasise a person’s previous behaviours or documented preferences prior to the cognitive disability. As conditions like dementia often result in a gradual, fluctuating process of cognitive decline, it is important that supported decision-making is used through this phase.

A disability-neutral approach gives regard to both will and preference

So where does this leave family members, carers, health professionals or service providers in responding to the needs of people with dementia? Does a human rights approach mean simply enacting their momentary expressed preferences, with no consideration of current decision-making capacity, consistency with their life history or risks to their financial, physical or emotional wellbeing?

No, I don’t think so. Many people express preferences, for example through signing a legal document, or pushing a plate away or behavioural expressions of unmet needs. The will and preference approach demonstrates that not all preferences are created equally. Some express our will, some are a response to emotional, sensory or physiological factors, and some are a combination. A disability-neutral approach considers both will and preference.

However, as Flavin eloquently points out, for some people it is of utmost importance to ensure, while their will holds sway, to make directives that can ensure certain aspects of their care are always consistent with their lifelong values.

In other cases, high quality care may be about responding to a person’s emerging patterns of behaviour or expressed preferences, even when these are not formulated through rational, deliberative processes. This could be because in these cases satisfying the person’s preference can contribute to their wellbeing, without risking their deepest values, financial legacy or safety.

A working model for implementing a will and preference approach in aged care settings might look something like this:

• If a person can understand the nature and consequences of a decision – independently or with support – and it is lawful, feasible and reflects their will, it should be respected, even if it entails risk
• If the person is expressing a preference that is not consistent with their will, this should still be considered, unless one or more of the following applies:
  • it conflicts with a prior explicit directive expressing their will
• • it constitutes a significant risk to their personal, cultural or social wellbeing
• • it is inconsistent with the rights of others
  • it is unlawful or otherwise not feasible to implement

In this sense I propose that when a person’s will and preference conflict, we should still give regard to their preferences, but enable a person to choose to prioritise their will, for example through the “advance social directive” that Flavin advocates.

All of this needs to be tempered with recognition that at present supported decision-making and will and preference is only legislated within the Aged Care Act. Other decisions under the scope of state and territory laws would be subject to the relevant frameworks. Future law reform may lead to developments in these laws as well.

I don’t argue that the will and preference approach is a silver bullet to resolve the intricacies of caring for people with cognitive disabilities. Instead, it is a development that more accurately acknowledges these nuances.

Only close and careful attention to a person’s decision-making process, current situation – for example, hunger, fatigue, delirium – longer-term behavioural patterns and life history can provide a path to deeper understanding of their expressed preferences, and how to respond.

I propose that the will and preference approach provides a context for further debate, which might ultimately enable the aged care sector to provide higher quality supported decision-making. Debating diverse views and perspectives on this topic can only stimulate deeper understanding.   

Dr Craig Sinclair is a senior research fellow in the School of Psychology at the University of New South Wales

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