Submission No 42

SUPPORTED DECISION-MAKING FOR ADULTS WITH DISABILITY AND OLDER PEOPLE IN NSW

Organisation: NSW Health

Date Received: 15 May 2026

Ref: INQ26/12

The Hon Cameron Murphy AM MLC Chair Committee on Ageing and Disability ageingdisability@parliament.nsw.gov.au

NSW Health submission to the inquiry into supported decision-making for adults with disability and older people in NSW

Dear Chair

NSW Health welcomes the opportunity to make a submission to the Committee on Ageing and Disability in relation to its inquiry into supported decision-making for adults with disability and older people in NSW.

The NSW Health system provides world-class healthcare to about 8 million people in NSW, including people with disability, older people, people requiring palliative and end-of-life care, and people with mental health and cognitive impairment needs. In some cases, its services perform high-risk and time-critical decision-making, in partnership with patients who may have fluctuating capacity.

This submission outlines the key areas of decision-making from a health perspective that NSW Health intends to bring to the Committee’s attention.

NSW Health works collaboratively with many NSW Government agencies

NSW Health works closely with other agencies, particularly the NSW Department of Communities and Justice, to align approaches to decision-making capacity, guardianship and restrictive practices as far as practicable. In addition, NSW Health has information-sharing arrangements in place with the NSW Ageing and Disability Commission to support coordinated responses for people at risk. This is through a Memorandum of Understanding.

Patient decision-making in NSW Health settings and practices

NSW Health supports patients’ decision-making across the health system through policy, practice and clinical guidance, emphasising patient autonomy, informed consent, person-centred care and least-restrictive approaches. The focus is on integrating shared decision-making into models of care and clinical guidance as an intentional strategy to support implementation at scale.

This approach ensures a person may be assisted by formal or informal supporters to help understand information, weigh options and communicate their preferences, while the decision itself remains that of the person. This approach aligns with the principles of the NSW Trustee and Guardian and is reflected in NSW Health’s expectations of clinical practice.

While decision-making is typically supported through a one-on-one relationship between a patient and their clinician, it can also involve care teams, families, and carers providing care at home. This is known as shared decision-making. The level of responsibility in the decision-making process depends on the situation and on whether it should be led by the clinician or the consumer. Shared decision-making serves as a practical mechanism for implementing supported decision-making in 1

healthcare. It upholds individuals’ rights to make autonomous choices, reduces reliance on substitute decision-making, and enhances the informed consent process.

NSW Health’s Agency for Clinical Innovation (ACI) has demonstrated that shared decision-making can be implemented at scale across diverse populations, including older people and people with chronic and complex conditions. ACI has advanced beyond awareness-raising by establishing shared decision-making as a strategic and operational priority, supported by co-designed tools, culturally adapted resources, and implementation studies. Key initiatives include:

Developing guides and resources to support shared decision-making for older people living with frailty considering surgery
Conducting an implementation study to scale shared decision-making in multidisciplinary osteoarthritis clinics in NSW
Developing the Dunghutti Way in partnership with the Cancer Institute NSW and Durri Aboriginal Corporation Medical Service to increase awareness and access to bowel cancer screening for Aboriginal people
Developing Finding Your Way, which is the first culturally adapted shared decision-making resource for Aboriginal people in Australia
Developing a culturally adapted measure for shared decision-making that has been implemented as a module for the Adult Admitted Patient Survey administered through the Bureau of Health Information
Consumer Enablement Guide
The implementation of Patient Reported Measures at the point of care, which includes patient reported outcome measures and patient reported experience measures. These enable shared decision-making by systematically bringing patients’ symptoms, outcomes, experiences and priorities directly into clinical conversations, ensuring decisions reflect what matters most to them. This helps patients and clinicians jointly discuss options, agree on goals, and adapt care based on outcomes that are meaningful to the patient.

Example of policies and practices of decision-making in NSW Health settings

Collectively, the following documents and approaches provide guidance tailored to individual needs, allow adequate time for decision-making, recognise that decision-making capacity may fluctuate, and consider how patients can be supported to understand, participate in and communicate their preferences wherever possible.

This approach is underpinned by the NSW Health Consent to Medical and Healthcare Treatment Manual and the ACI’s Capacity, Substitute Decision-Makers and Consent clinical tool. These tools establish a presumption of capacity and require that individuals be supported to make their own decisions wherever possible, with substitute decision-makers engaged only where a person lacks capacity to make a particular decision even with appropriate support.

These principles are reflected across a range of NSW Health Policy Directives and Guidelines, including:

Responding to the health care needs of people with disability (PD2024_030)
Guardianship Application Process for Adult Inpatients in NSW Health Facilities (GL2025_008)
Voluntary Assisted Dying (PD2023_037).

NSW Health policies emphasise that people must be involved in discussions about their care to the fullest extent possible, regardless of whether they are able to provide formal consent. Beyond formal and necessary policy approaches, however, principles of trust, respect and inclusiveness are at the forefront of the culture that our dedicated and skilled workforce brings to their roles every day. PD2024_030 explicitly requires NSW Health staff to avoid making assumptions about a person’s capacity and to avoid unnecessarily limiting a person’s participation in decisions about their 2

care, as this can diminish a person’s experience of care and lead to poorer outcomes. This guidance recognises that individuals, regardless of diagnosis, needs or age, may need support to understand information, consider options and communicate decisions, rather than having decisions made for them.

Where a person is unable to provide informed consent to medical treatment, NSW Health policy requires that they remain fully involved in discussions about their care as far as possible, with consent provided by a legally authorised substitute decision-maker in line with the Consent to Medical and Healthcare Treatment Manual.

NSW Health also supports culturally safe and inclusive decision-making through targeted tools and practices for people from culturally and linguistically diverse backgrounds through Interpreters – Standard Procedures for Working with Health Care Interpreters (PD2017_044), which mandates the use of professional interpreters to support informed consent, patient understanding and safe decision-making.

NSW Health provides grant funding (2023-24 to 2026-27) to the Council for Intellectual Disability. The program Just Include Me – Accessible End of Life Care for People with Intellectual Disability aims to increase palliative care, advance care planning, death and grief literacy for people with an intellectual disability and people supporting those with intellectual disability, through resources and training for health professionals. In addition, the Intellectual Disability Health Network is involved in activities to support people with cognitive disability to be engaged in their health care and decision-making in the process. This includes developing resources to support decision-making for people with intellectual disability for vaccination, and evaluating a model of palliative care for people with intellectual disability that includes a supportive decision-making approach.

Regarding mental health services, NSW Health supports the use of person-centred decision-making that helps consumers to maintain autonomy and have their wishes and preferences for mental health care recognised. Supported decision-making is being considered in a review of the NSW Health Discharge Planning and Transfer of Care for Consumers of NSW Mental Health Services Policy Directive (PD2019_045). This work is being undertaken with community partners, including peak bodies, consumers, and carers during 2026, and will align with PD2024_030. As part of this, proposed changes include:

Strengthening of principles to centre consumer-led decision-making and the use of supported decision-making in mental health care
Promoting the roles of carers and families as partners in care planning at all stages of the consumer’s care journey
Explicitly facilitating supported decision-making in the process of care and discharge planning within NSW Health mental health services.

Other key areas of note regarding patients needing support to make decisions are in the context of spinal cord injury and trauma. People with spinal cord injury may need supported decision-making due to higher rates of cognitive impairment, including from co-occurring or pre-existing traumatic brain injury and older age at the time of injury. The State Spinal Cord Injury Service provides clinical guidance supporting early identification of cognitive impairment and person centred and supported decision-making in care planning. Similarly, trauma settings present distinct challenges for patient decision-making, due to time pressure, high risk treatment decisions and variable access to supports. The Institute for Trauma and Injury Management is reviewing supported decision-making for older adults in trauma care to address system, legal and ethical challenges in acute settings.

NSW Health also provides structured supports to enable older people and people with disability to participate in healthcare decision-making in an end of life and palliative care context. Guidance for supporting patient decision-making in advance care planning is provided in line with the End of Life Care and Decision-Making Guideline (GL2021_004), NSW Clinical Principles for End of Life and Palliative Care Guideline (GL2021_016) and Using Resuscitation Plans in End of Life Decisions (PD2014_030). The ACI is reviewing and revising this approach to reinforce the importance of

supported decision-making in the context of end of life care planning. Patients must be empowered to participate in treatment decisions consistent with their decision-making capacity.

NSW Health provides a suite of consumer-focused resources. For example, the Advance Care Planning Brochure and other resources are available to patients and their families and carers on the NSW Health website. The NSW Health Advance Care Directive information booklet and form supports individuals to understand future healthcare options and document their preferences while they have decision-making capacity. Tailored resources for people with intellectual disability and people with low literacy to support equitable access are also available on the NSW Health website.

Complexities and challenges interacting with the Australian Government’s Aged Care Act 2024

The Commonwealth Aged Care Act 2024 has a Statement of Rights and associated principles intended to support older people in participating in decisions in their aged care services, and maximise their decision-making capacity.

NSW Health prioritises supporting decision-making, with substitute decision-making used when needed and guardianship as a safeguard of last resort. In practice, however, the interaction between Australian Government reforms and NSW legislative frameworks has increased complexity and confusion across care settings. While the Aged Care Act 2024 regulates the requirements of aged care providers, decision-making authority remains grounded in state and territory law, such as the Guardianship Act 1987 (NSW).

Multiple parties may be involved in decision-making, including supporters, family members and substitute decision-makers. Often this is without a clearly defined hierarchy or escalation pathway when roles are unclear, overlapping or contested. Interface challenges between Commonwealth supporter arrangements and NSW legal frameworks can further contribute to uncertainty. These issues are compounded by workforce capability challenges, including variable understanding of decision-making roles and authority, limited familiarity with escalation pathways, and the need for clearer operational guidance and training. This results in inconsistent application across settings.

These factors are driving risk-averse behaviours, including a tendency to default to formal substitute decision-making mechanisms, such as guardianship or trustee arrangements, earlier than intended. The consequences are significant. Delays in establishing lawful decision-making authority, including timeframes associated with applications to the NSW Civil and Administrative Tribunal, contribute to delays in decision-making and prolong unnecessary hospital discharge delays.

Yours sincerely

redacted

Elizabeth Wood Deputy Secretary, Health System Strategy and Patient Experience