Insight In pursuit of a good death

In pursuit of a ‘good death’: Our lessons learned in supporting voluntary assisted dying programs across Australia

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Idea In Brief

Significant change

There is a lot of change underway on the provision of voluntary assisted dying. Now is a good time to pause and consider lessons learned so that in every location and background, people who choose to access VAD are supported to have a good death.

Human-centred design

Governments have been supporting implementation of models of care through developing policies and guidance. These resources are most useful when they are informed through human-centred design and reflect the real needs of individuals.

Invest in people

Health services that provide VAD should ensure there is adequate time for healthcare professionals to undergo training and be part of communities of practice. Investment is also needed in the administration of VAD from a non-clinical perspective.

“Death is something that happens only once in our lives. It is important that we conduct it well.” – Sadhguru

The pursuit of a good life – and good health – has been an enduring goal for humanity. From bloodletting and balancing humours in the Middle Ages through to advanced robotic surgeries today, we have been active in improving our state of wellbeing to be able to live better, for longer.

The pursuit of a ‘good death’ is a concept that is now catching up. Policy makers, advocacy groups, healthcare professionals and indeed the community have sought to empower individuals to make decisions about their end-of-life care and to die in circumstances that align with their own values and preferences. This move has extended into the realm of voluntary assisted dying (VAD).

Victoria, Western Australia and Tasmania were the first Australian states to legalise VAD (following a brief period of legalisation in the Northern Territory in the 1990s), and these jurisdictions are now starting reviews of their schemes. Queensland, South Australia and New South Wales have all commenced (or will commence) schemes in 2023; and following the lifting of a federal ban on VAD in the Northern Territory and the Australian Capital Territory, the NT has now convened an expert advisory panel to consider the legalisation of VAD.

Given the amount of change underway, it is a good time to pause and consider lessons learned so that in every location and background, people who choose to access VAD are supported to have a good death.

We have been very fortunate to have worked with government clients, advocacy groups and health service providers to support the implementation or evaluation of VAD programs.

Through these experiences, we have found that in successful programs, patients sit at the heart of the process. This means that patients’ autonomy to make decisions is respected – including their decisions to engage with VAD; the timing, mode, location and involvement of others in their death; and their ability to receive care that reflects their cultural, religious and personal values.

Achieving a good death, however, is not simple. It requires work to get the regulatory framework right, to set the system up for success, and to support healthcare practitioners to provide good care on the ground – while also respecting the diversity of views on this topic.

In this article, we share our thinking on some key considerations for policymakers and service providers seeking to implement or review VAD programs, and offer some lessons we have learned on the topic.

Getting the regulatory framework right is vital

Legislation underpins several features of the scheme, including eligibility criteria and the processes through which people can access VAD.

While there are some differences in the schemes between states, VAD is consistently available to adults over 18 years of age and when a person has a terminal illness and natural death is expected within months, with a few exceptions. There is some discussion about whether it should be available for non-terminal conditions such as dementia or could be requested through an advance care directive so that it could be available to people who have lost capacity to provide contemporaneous consent.

The risk of people feeling coerced has been central to the design of statutory processes to request and access VAD. These processes may need to evolve further, but care must be taken so they do not become so bureaucratic that they are effectively inaccessible, particularly to people who are sick and vulnerable.

The system needs to be set up for success

Given the recency of VAD, governments have been heavily involved in supporting implementation of suitable models of care, particularly through developing policies and guidance materials. We have found that these resources are most useful when they are informed through human-centred design and reflect the real needs and preferences of individuals. For example, special consideration must be given to understanding and respecting how VAD sits within First Nations people’s beliefs regarding end-of-life practices, death and dying.

Bringing these models of care to life is contingent on the availability of qualified and engaged healthcare professionals.

The lack of a sustainable workforce is a risk for all jurisdictions’ schemes. A misalignment between the volume and distribution of qualified professionals and the people who are seeking to access VAD has been frequently reported. Maldistribution of the health professional workforce is well-documented, but it causes particular challenges in meeting the needs of people in regional and rural areas, as certain VAD consultations cannot be conducted via phone or telehealth under existing federal carriage laws.

The responsibility to facilitate VAD services currently falls on the shoulders of a relatively small pool of practitioners and we are hearing of many burning out quickly. Many stakeholders we spoke to noted the need for greater investment to achieve equitable healthcare access and outcomes for regional communities, and emphasised that solutions need a workforce dimension. Adjusting training requirements for professionals to be qualified to facilitate VAD, along with establishing stronger support systems and networks for workers, could meaningfully support more people to work in this space.

Funding arrangements also need to be considered. There is currently no Medicare item specific to VAD and the time involved in supporting individuals in their decision making and completing paperwork often exceeds what is covered by a standard consultation. This can act as a disincentive for privately-billing practitioners in the community to be actively involved. Notably, this arrangement is also creating barriers for people who wish to access VAD, but who cannot meet the out-of-pocket costs.

Appropriate governance and oversight are other system-level enablers. All states have established VAD boards, which keep registers of VAD requests and distribution of VAD substances, among other things. These boards can be well placed to drive continuous improvements in VAD by collecting and interrogating data (with support from their secretariat) and to feed back information to the system about uptake, accessibility and experience for different stakeholders.

Good care needs to be provided on the ground

Our experience has highlighted that conflicting beliefs, values and priorities can translate into poor cohesion between services in a care setting.

We have implemented VAD in a major health service where extended consultation and co-design with stakeholders (deliberately including conscientious objectors) led to a VAD program design and experience that was respected by patients and staff with diverse views on VAD.

In several examples around the country, consultation avoided well-entrenched stances from certain disciplines that only led to greater division years later. Engaging deeply and genuinely will lead to better outcomes for staff and the community wishing to access VAD. It is also consistent with multidisciplinary and interprofessional approaches to care, which underpin many models of care, particularly cancer care.

Workplace culture also needs to be actively shaped so that differences of opinion are respected and patient care is kept at the heart of all discussions. This is a core value for health services and should be extended into contentious health topics such as VAD. No doubt the ethics of health care will continue to be challenged as consumer expectations change and technology evolves.

We have also found that policymakers need to plan services carefully and transparently. Policies and protocols should be designed in a way that they can be implemented by health services, without needing to re-prosecute stakeholder consultation every time – a step that can be emotionally laborious and unnecessary. State-wide policies need to carefully consider the diverse views of stakeholders, but in parallel remind healthcare professionals and their employers that patient autonomy and informed choice remain central tenets of healthcare.

The emotional toll involved in VAD cannot be underestimated, and ‘good care’ needs to extend beyond a ‘good VAD death’. In stretched health services, for example, we have observed that pastoral and bereavement care are often not available to staff and families, which can leave such individuals vulnerable. Better access to such supports can meaningfully improve the quality of care and experience for people impacted by VAD.

The experience so far has revealed key lessons

Our work has revealed four lessons that can guide governments, health service providers and other stakeholder groups to implement, optimise and improve their VAD programs:

  1. Engage, engage, engage. It is critical to talk to people – including patients, their families, community leaders, healthcare providers, advocacy groups – and to invest time in understanding their perspectives in order to deliver compassionate, quality and respectful care. This especially includes stakeholders with diverse backgrounds and views on VAD, so that programs are not ambiguous and have clear provisions for conscientious objectors.
  2. Revisit first principles. When setting or amending legislation, think about what it needs to achieve. Issues such as patient eligibility, prescribed roles for certain health practitioners and statutory processes may need to change to reflect emerging best clinical practice and contemporary community views and expectations. Legislation should balance prescriptiveness and flexibility so care can be delivered on the ground in a way that makes sense.
  3. Look after your workforce. Facilitating VAD is one of the most emotionally intense services a healthcare professional can offer. Ensuring staff have the capacity – and the support network – is critical to sustainable care. Health services that provide VAD should ensure there is adequate time for healthcare professionals to undergo training and be part of communities of practice. Investment is also needed in the administration of VAD from a non-clinical perspective.
  4. Use data to drive continuous improvement. Invest in performance monitoring and evaluation frameworks and data collection. Ensure the relevant governance bodies look at this information, derive insights and feed these back to the system. This way, VAD programs can continually improve and, with this, improve the experience of staff and ensure community members are afforded good deaths through VAD if this is their choice.

There is a lot at stake in getting VAD right

The introduction of VAD has represented a watershed moment in Australia’s healthcare history. While it remains a divisive topic, there is growing appreciation that it will remain a core end-of-life care option for many Australians.

Getting VAD programs right is important; done well, VAD offers a way for terminally ill people to pass away with compassion and dignity. Done poorly, however, it can be an arduous, bureaucratic and insensitive journey that can have a lasting negative impact on patient care, the wellbeing of the health workforce, and the community at large.

Get in touch to explore how we can support you to optimise the provision of VAD in your jurisdiction.

Connect with Lauren Ware Morand and Dr Paul Eleftheriou on LinkedIn.

Prepared with input from Rob Sutherland.