The UX of voluntary assisted dying: friction and complexity as safeguards

The way Victoria is implementing the Act and providing voluntary assisted dying (VAD) is being called the “safest and most conservative in the world” by the Premier of Victoria, with 68 safeguards put in place to help ensure only eligible people can die with medical assistance.

But how accessible is this ‘right’?

Australia: a pioneer in legalising assisted dying

It’s not the first time it’s been legal in Australia for a doctor to help someone die. In fact, the Northern Territory of Australia became the first legislature in the world to pass a law for voluntary euthanasia in 1995. This law was in place for about about nine months before it was overturned by the Federal Parliament.

Four Australians, all dying from cancer, legally received medical help from a doctor to die peacefully. It’s taken almost a quarter of a century for Australians to once again to be comfortable enough to have a bill pass Parliament. Victoria is the only state in Australia where this is legal now and is one of only 18 jurisdictions in the world to make this possible.

Western Australia might soon become the 19th, as their proposed VAD bill is being debated currently. With a reported 90% of Australians supporting assisted dying for the terminally ill according to the ABC’s recent Vote Compass results , other states might soon follow. The Victorian experience is going to be important in testing how comfortable Australians are with how this new law operates in practice.

The discussion of VAD has also highlighted the importance of quality, globally available palliative care. Specifically, that the provision of VAD should not come at the cost of Victorians being encouraged to stay focussed on providing this essential service to all who need it, including those who may be considering ending their life with medical assistance.

Competing rights and moral frameworks

Currently, if you visit Wikipedia’s page on VAD in Victoria, you’ll see the the new law described as giving ‘anyone suffering a terminal illness, with less than six months to live, the right to end their life’. In fact, there’s a few things standing in the way of this being a ‘right’, and these factors are to do with how accessible this ‘right’ is.

Part of the difficulty of guaranteeing access to the “right” of Voluntary Assisted Dying (VAD) to eligible Victorians is a competing right that medical practitioners have to uphold their personal beliefs and values as members of a community, and to conscientiously object to providing this service.

This is described by Australian Medical Association as occurring ‘when a doctor, as a result of a conflict with his or her own personal beliefs or values, refuses to provide, or participate in, a legal, legitimate treatment or procedure which would be deemed medically appropriate in the circumstances under professional standards.’

What this means is that in practice, if someone wants to find out if they are eligible for VAD, or wants to go ahead and access the service, there are multiple checkpoints and they will need willing doctors to grant them the access to this right. The process of ‘applying’ for VAD is designed so that people who want to access it will need to be explicit in asking for information about it from a doctor, submit two requests, and pass two assessments by two doctors before having the lethal medication dispensed to them. For people who are eligible, but cannot self-administer the lethal medication, they will need to have a medical practitioner give it to them intravenously. Doctors, too, have expressed concern about navigating their role in the new laws.

The VAD Implementation Taskforce has tackled the many issues surrounding the introduction of new laws into practice including legal and ethical frameworks. At a booked-out conference attended by medical professionals, community groups and interested public in May this year, the taskforce presented information for consumers and guidance for health practitioners.

Complexity as a safeguard

Throughout the conference, it was acknowledged that the system would be complex to navigate for potential users. This is a feature, and not a bug, the taskforce says. Unlike other services, the user experience (UX) of the VAD service cannot be too easy. It has been designed to have pain points built in, as this provides assurance that Victoria can provide a lethal service that is safe enough to offer. Since there is no official list or database of doctors in an area who are or aren’t offering VAD services — in order not to violate or ‘out’ doctors who were or weren’t conscientious objectors. People don’t know whether they can expect to fruitfully engage with their doctors on the topic.

The State has appointed two full time ‘Voluntary Assisted Dying Care Navigators’ to support people to identify appropriate service referral pathways and connect people to health practitioners and services that meet their needs. Community organisations such as Dying with Dignity Victoria are seeking to put together a list of VAD-friendly and VAD-trained professionals. Inevitably, more information will start to be published around this. In the meantime, the Navigators will be responding to requests only, and will not be proactively seeking to create these networks.

Proactiveness is not encouraged

Many of the 68 safeguards are designed so that people are not encouraged to be proactive about offering VAD. Being sensitive, extremely sensitive, to how the service could be abused has been top of mind for the Implementation Taskforce.

The process has been designed to ensure that a person’s request for VAD fulfils the following criteria:

• voluntary (the person’s own decision), and
• consistent (the person makes three separate requests for voluntary assisted dying during the process), and
• fully informed (the person is well-informed about their disease, and their treatment and palliative care options).

With some of the known issues that Australia is grappling — elder abuse for example — it’s imperative this service is not seen to be advertised or pushed on to anyone. Instead, the opposite approach is being used: medical practitioners are being guided only to ‘react’ to requests for VAD, or information about VAD, that are entirely unambiguous and that rely on a person’s prior knowledge of the availability of the service. For those in rural or remote parts of Victoria, and who may find it hard to see a VAD-trained doctor in person, there’s not really an alternative. With discussions between patients and doctors over the internet or phone being potentially in breach of Commonwealth offences for inciting or instructing suicide online,Victorian officials are advising doctors that consultations about VAD should be done strictly in person.

Towards a more compassionate State

There are some parallels between seeking VAD and seeking abortion under laws passed by the Howard government. For the person seeking to access their rights, it is incumbent upon them to be motivated enough, educated enough, connected enough, and resilient enough to get through the red tape, despite it being available, and legal. Whether friction in the UX of accessing services such as these should be minimised or deliberately built in will differ depending on the service. Like with moves to decriminalise abortion, such as Queensland’s change last year, acts of parliament are a first step and access is another thing: the real experience of users will depend on much more than policy design.

Here’s an example of a training video produced by the Victorian Government that shows how a palliative care nurse might be expected to interact with a person seeking information about VAD. It gives an idea about the care and skill needed by a treating doctor or nurse to guide a discussion like this, as well as the deliberate obtuseness, and potential frustration that might be felt by the person requesting the information.

<iframe title=”vimeo-player” src=”https://player.vimeo.com/video/326981264" width=”640" height=”360" frameborder=”0" allowfullscreen></iframe>

For health professionals, especially those working in palliative care, requests for an assisted, compassionate way to help someone to die voluntarily may not be new, but it might happen more frequently. Even though nurses do not play a formal part in the VAD process, the Australian College of Nurses’ position is that ‘nurses are likely to be asked about the Act, thus it is essential for each nurse to be familiar with the Act, as well as being skilled in having sensitive conversations about end of life concerns and a person’s choices and preferences’.

The raft of sensitivities and legal requirements and protocols for what to do when this happens may be heightened, and health professionals will require training, practical and maybe emotional support through their workplaces. The UX of VAD needs to be considered for all users, not just the person or ‘consumer’ who wants to access the service, and at this early stage of VAD’s implementation it’s hard to know what the experience of those using or impacted by the services has been so far.

It may be distasteful to evaluate either pregnancy termination or VAD as ‘consumer’ experiences, but as the Government starts to take a human-centred, or customer-focussed approach to providing services, it’s important to critique it. This service is likely going to be accessible mostly to those who can afford to think in terms of ‘being consumers’. Those who, in a neoliberal economic sense, can participate, represent themselves in a complex system and have enough mobility to choose how they might like to die.

These contested areas in health where personal rights and freedoms butt up against Australia’s ability to provide services at scale to diverse communities will continue to be challenged, but for now in Victoria — we’re proud to be in a more compassionate state.