What is the will and preference of a person under care?

At the Autonomy First multidisciplinary Capacity and Capability Clinic, we often work with family members after a dementia diagnosis. Unfortunately, we see a number of cases where the affected person has been treated as having no ability to contribute to their care.

This approach is fundamentally wrong. It undermines the application of Supported Decision Making as a framework for supporting and safeguarding the will and preference of a decision maker, in the light of the National Decision-Making Principles.

Start by ensuring values are aligned

Experience tells us that the best results when caring for a person occur when the values of the affected person and their supporters are aligned.
In short, you need to have a conversation about what the person wants.

Helping ageing family members define what matters to them

We have been recently introduced to the work of ExSitu whose purpose is to help ageing family members define what matters to them and have those conversations. They provide a useful tool that enables the initial wishes of a client about their care to be taking into a consultation.

The information drawn from a client and their supporters with this tool can inform not only the creation of an Advance care directive, but also estate administration plans and estate planning processes generally. This information enables the development of Letters of Wishes to support the operation of personal representatives such as Supporting Attorneys, Enduring Guardians and Enduring Attorneys.

What you need to remember about capacity:

Being able to describe your values and how they should be reflected in your representatives helping you manage your affairs is telling evidence of your decision-making ability. The Ex Situ tools provide useful support for this process. It is nonetheless important to remember:

1. Capacity is a relative not a binary concept. Capacity is not something you have or have not.
2. Capacity is not diagnosis-bound.
3. You can only assume capacity when you are not on notice of a capacity assessment trigger.
4. Supported Decision Making can be used as a methodology to scaffold the conversations and activities between a person under care, their representatives, supporters and alternate decision makers.
5. Once you are on notice of a decision-making trigger, it needs to be resolved if your professional representation is to proceed.
6. It may be necessary for NCAT or the Supreme Court to determine the consequences of doubts about capacity or the actions of personal representatives. The discussion of the role of the Court in Justice Geoff Lindsay’s paper repays careful reading : see FIDUCIARY OBLIGATIONS THE LIABILITY TO ACCOUNT AND VULNERABLE PEOPLE.12.5.17 (nsw.gov.au).

Trigger Referral Questions

Exploring someone’s decision making ability starts with a conversation. The values based approach is useful, as is a person’s ability to engage with conversations started with one or more of the trigger questions set out in the following list.

These questions can help understand what needs to be done to honour, implement or resolve what the person under care wants to achieve.

Trigger Referral Questions

1. Is my client/patient capable of making decisions independently?
2. Is there any reason to doubt my client’s or patient’s ability to decide for themselves?
3. Is there a need to make an application to NCAT?
4. What d o I need to apply to NCAT for and what information should I include?
5. What options are available in place of NCAT to resolve the issue?
6. Is my client or patient able to look after their own financial affairs?
7. Is my client or patient at risk of financial exploitation?
8. How can I assure a client’s protection from financial exploitation?
9. How do I go about reconciling differing family views around the care and decision-making capabilities of a family member?
10. Is my patient able to make decisions about their medical treatment, support needs and appropriate accommodation independently?
11. Does my client or patient understand the terms and implications of a contract or transaction?
12. Does my client have the capacity to provide instruction?
13. Can anything be done to facilitate the decision-making ability of my client or patients?
14. How can we establish a team of health, legal and finance professionals to serve the needs of people with diminished decision-making capability?
15. Can decision making capabilities be evidenced and assured?
16. Should I seek a second opinion around my client or patient or family members decision making capacity?
17. When should an enduring power of attorney or enduring guardianship be activated?
18. How do I activate an enduring power of attorney or guardianship?
19. Do I need to seek out independent legal and/or medical advice to resolve the issue?
20. How does the medical diagnosis of my client/patient or family member impact upon their decision-making capacity?