After the first two years of operation, the NSW VAD Act requires a legislative review by the Ministry of Health.

This review is a crucial opportunity. It allows the community, healthcare professionals and advocacy organisations to reflect on how the law is working in practice, to suggest improvements to ensure that VAD is accessible and to consider whether the regime is sustainable in the face of increasing VAD applications and a limited number of VAD practitioners.

The process began late last year with consultation sessions led by Dr Kerry Chant with key stakeholders, including DWD NSW. Submissions were sought from a wide range of groups and members of the public. The Ministry will report to Health Minister Ryan Park who is required to table the report and his response in the NSW Parliament by the end of this year.

Our submission and massive supporter survey

Dying with Dignity NSW made a very detailed submission to the review which draws on research, real-world experiences since VAD commenced in NSW, and - most importantly - the voices of our supporters. More than 4,000 people contributed to our VAD survey, sharing experiences, opinions and deeply personal stories about VAD and other end-of-life experiences. 

The result is a submission that combines an assessment of the VAD law and its practical application with lived experience — demonstrating both the successes of VAD in NSW and the areas where the system can be improved.

VAD has undoubtedly transformed end-of-life care for some people facing unbearable suffering. Thousands have explored the option of VAD and it has also opened the door for more open and honest conversations about death and dying within the community and the healthcare sector.

Our survey received comments from hundreds of those with a personal experience of VAD and illustrates the profound difference this choice can make.

“My grandma died through VAD and it was the best experience our family could have asked for. She was able to die with dignity on her own terms… It helped the grieving process a lot to know that she had chosen this and died without pain and suffering.” 

“Had two family members who have used VAD in the past three months… both deaths, while incredibly sad, were also incredibly peaceful.”  

“My mum had MND and chose to access VAD. It was the most dignified, beautiful, loving experience… We got to say our goodbyes and witness her pass peacefully.” 

“I have seen first-hand how much relief it brings to people and their families… It is truly an honour to assist people in the final chapter of their lives.” 

The focus of our submission

The review highlights four key themes:

• Patient choice
• Equitable access and inclusion
• Safeguards for patients and healthcare workers
• Service delivery and sustainability 

We have been very pleased with the way that VAD has been implemented in NSW with a centralised Care Navigator Service and local VAD teams in each of the 15 local health districts across the state. There is also the Remote Access Service (aka the Flying Squad) which will send authorised VAD doctors from Sydney to assess patients and administer VAD when no local practitioners are available. 

We have seen first hand the genuine commitment to patient-centred care and equitable access from those directly involved in delivering VAD, and the teams working behind the scenes to ensure that the system operates as intended.

However there are some areas where we believe the regime could be improved and these have been outlined in detail in our submission along with supporting testimonies from our members and supporters.  

Many recommendations would require amendments to the NSW VAD law but unfortunately this is unlikely in the foreseeable future given the current make up of NSW Parliament and the influence of the Catholic Church and religious lobby groups. However there are a number of areas where changes to policies, processes and clinical guidelines could make a significant difference without requiring legislative change.

Our submission addresses each of these areas in detail, highlighting where the current system is working well and where reform could strengthen access, equity and sustainability.

Key themes of our submission

Lack of awareness of VAD in healthcare sector and community generally

Despite the best efforts of the Ministry of Health to inform doctors and other healthcare workers about VAD, it is clear that many know little about it. Some clinicians mistakenly believe they cannot raise the option of VAD with patients. This increases the chances of people receiving inaccurate information and their access to VAD may be delayed or denied. 

A particular problem is the current “first request” guidance which directs patients to speak with their doctors at first instance. This is a major practical barrier because most doctors are not authorised VAD practitioners and many do not understand their obligations, or may be conscientious objectors. As a result, patients may be misinformed, discouraged, delayed or effectively denied access before they even enter the formal VAD pathway.

There are very few authorised VAD practitioners and their details are not published, so it is practically impossible for patients to find a doctor who can assist them with VAD, without going through the VAD Care Navigator service.

We have recommended:

• updating VAD information materials to direct patients to the centralised Care Navigator Service as their first port of call, and
• more education for doctors (especially GPs) about their obligations if patients request VAD, including a requirement to provide contact details for the Care Navigators.

Access to VAD in aged care facilities

Despite explicit requirements in the NSW VAD law, some residential aged care and disability accommodation providers are not complying with their legal obligations to allow residents access to VAD onsite. This is also an obligation under the new federal aged care laws.

This is causing distress, delay and obstruction, especially in regional areas where faith-based facilities may be the only option. 

“The RACF put up barriers to the residents' accessing VAD treatment, telling them they were ineligible because the facility does not allow it. Staff were directed to not answer any questions about VAD, but to refer the resident to upper management.”

We believe that more explicit guidance is required for these providers in the form of direct communication from NSW Health to each facility, along with awareness raising with industry groups and reporting of non-compliance to the aged care regulator.

Institutional conscientious objection in health facilities

Unlike aged care facilities, the VAD Act allows private hospitals and hospices to refuse access to VAD onsite. We consider this to be an unacceptable imbalance between the ‘religious freedom’ of an organisation and the rights of patients in their care, especially given the large proportion of private hospital care which is delivered by faith-based providers. These providers also operate some major public hospitals in NSW (including St Vincents in Sydney and the Mater Hospital in Newcastle).

We believe the VAD Act should be amended to require these facilities to allow VAD onsite (as with aged care facilities).

Public information about non-availability of VAD at health and residential facilities

Both aged care and health facilities that do not participate in VAD services are required to publish information about what VAD services they do or do not provide so that patients and families can make informed choices.  

It is absolutely clear that very few facilities are complying with this obligation. Even a cursory search of facility and provider websites shows that VAD statements are generally non-existent or difficult to locate. Where they do exist the information is often inaccurate, vague or confusing.

We believe compliance with this obligation should be monitored and enforced.

Individual conscientious objection and obstruction.

While we support individual clinicians’ right not to participate in VAD, the VAD Act currently allows objecting doctors to effectively abandon patients – they have no obligation to provide any information about VAD or even disclose their objection. This can lead to misinformation, delay or denial of VAD, discrimination or judgement of a patient’s choices, and denial of on-going care.

“I was so annoyed and disgusted by mum’s GP of 40 years! He brought religion into it and tried to talk mum out of it!” 

“My father’s doctor and hospital staff were not supportive and at times rude/ judgmental regarding my father’s choice.”

This is inconsistent with the generally accepted position in medical ethics that a doctor with a conscientious objection must not abandon the patient and must facilitate access to care.  

Ideally the VAD Act should be amended to require objecting practitioners to disclose their objection and provide contact details for the VAD Care Navigators. However, at a minimum, doctors should be held to the ethical guidelines set by their professional bodies and subject to consequences for failing to meet them.

Absence of complaints and accountability mechanisms

We know that some individuals and organisations are not complying with their obligations under the VAD Act. In some instances this is due to lack of knowledge. In others, it is clear that non-compliance, or even active obstruction, is deliberate and stems from opposition to VAD.

The NSW VAD Act creates certain offences and avenues for professional sanction. For example: it is a criminal offence to knowingly providing false information about VAD, and certain actions can constitute professional misconduct which the VAD Board can refer to regulatory bodies.

However, there are currently no clear systems for reporting, investigating or enforcing breaches of those obligations and no obvious complaint process for affected patients.

In the absence of any meaningful scrutiny or consequences there is little incentive for practitioners or facilities to either understand or comply with their obligations.

Our submission proposes creating formal VAD-specific complaint, reporting and investigation mechanisms, along with clearer enforcement pathways and information for patients, clinicians and facilities about how to raise concerns.

Eligibility Criteria and the Prognosis Requirement

One of the most significant policy issues raised in our submission concerns the prognosis requirement in the current law. Under the NSW legislation, a person must be expected to die within six months (or twelve months for certain neurodegenerative diseases) in order to qualify for VAD. 

However, predicting the timing of death is notoriously difficult in many illnesses. We are aware of a number of patients who were assessed as ineligible for VAD because doctors could not determine that death would occur within the required timeframe, who subsequently died a matter of days or weeks after receiving that assessment.

“My sister is terminally ill, started the process but cannot go ahead because she has a heart and lung condition, specialists say she could die tomorrow, she could die in a year.”

While these time periods were included as safeguards, it is clear that the uncertainty surrounding prognosis can create arbitrary barriers to access. Our submission recommends extending the timeframe to 12 months for all illnesses or adopting a broader test such as whether death is “reasonably foreseeable”.

Improving access and building a sustainable VAD workforce

While most experiences have been positive, some supporters in regional areas reported difficulties or delays in accessing VAD. One family described the difficulties a dying relative faced over the Christmas period:

“At the time… there were only six doctors in the entire region who had completed the required VAD training… Despite countless phone calls while caring for him, we simply could not organise an assessment in time.” 

Stories like this highlight an important issue raised in our submission: the need to ensure that the VAD workforce is large enough and distributed widely enough to meet expected increases in demand.

VAD practitioners often travel long distances and carry heavy emotional and administrative workloads. Our submission recommends recruitment of more practitioners in regional centres and additional pharmacy hubs to ensure access to care without unnecessary delays.

In addition, the federal law prohibiting communications about VAD via electronic means, including telehealth, must be amended as matter of urgency. There is no other medical service which is restricted in this way and it places an unfair burden on dying people in regional areas and those who are physically unable to attend face-to-face consultations.

Looking Ahead: Dementia and Advance Requests

Access to VAD for those with dementia is the issue most often raised with us. We believe that a majority of the community would support the right of a mentally competent person to make a legally binding ‘advance request’ for VAD to be administered at a future time. In our survey 92% of respondents supported allowing advance requests for VAD in appropriate circumstances. 

While we acknowledge that this issue involves complex ethical and legal questions, it is clear that calls for expansion of VAD are likely to increase, with dementia already the leading cause of death in Australia. We believe it is possible to design a safeguarded advance-request model for dementia but accept that legislating such a scheme is not realistic in the foreseeable future.

Other key issues

• The NSW residency requirements make no sense now that VAD is available across the country and we believe they should be removed and VAD extended to anyone living and receiving their medical care in Australia.
• Although most people applying for VAD are also receiving palliative care, we would like to see a closer alignment between the services to avoid fragmented care. VAD should be more clearly integrated into NSW Health’s end-of life policies and planning for future service delivery.
• We would like to see more frequent VAD Board reports with even more detailed and nationally comparable data so trends, gaps and inequities can be properly assessed, and the operation of the various Australian VAD regimes can be more easily compared.

Thank you to our supporters

We are incredibly grateful to those who participated in our survey. It has enabled us to provide valuable testimony to support our submission to the review, illustrating the real-world impact of VAD. Your voices strengthen our advocacy and ensure that policymakers hear directly from the people whose lives are affected by these laws.

Accessing our submission and survey results

LINK: Read our submission to the VAD review 

LINK: Check out the results of our Survey