One of the most unfortunate aspects of the debate around Voluntary Assisted Dying (VAD) is the lack of nuance about the important issue of palliative care.
Stories highlighting the ‘perfect death’ compared to the natural dying process, together with the inability of palliative care to treat all suffering, were used as a justification for VAD.
The VAD narrative painted death — and unwell life leading up to it — to be horrible. The implication was if you don’t support VAD, you want people to suffer — and lose their freedom.
Moreover, proponents of VAD have sought to hold palliative care to the impossible standard of alleviating all suffering in everyone, and labelled as cruel those who already care for the most vulnerable people but don’t agree with VAD.
This has unfairly cast palliative care workers, in practice one of the most empathetic specialties, as mongers of suffering. And it will be to the detriment of the majority of Australians who won’t choose VAD.
The campaign for VAD has stifled debate and hindered the opportunity for a much-needed discussion about dying in our modern medical system. Worse still, it has wasted a crucial opportunity to rethink how the health system contributes to suffering.
And the fear of death has been perpetuated.
Even in the public system, VAD is a paradigm shift. The health system’s modus is to prolong life at all costs (often with little consideration of quality of life). Indeed, our whole health system is geared towards acute reversible illnesses, not older patients with multiple chronic diseases — the population it mostly serves.
And while most people don’t want to die, the fervent desire for VAD actually tells us some scenarios are considered worse than death. Indeed, a US study found that fear of losing autonomy or becoming a burden is the number one reason people seek assisted dying, not pain.
Many doctors haven’t heard this message, focusing instead on the lucrative business of ‘doing things to people’ rather than caring for people.
Palliative care is different, and far more than simply pumping people on their deathbed full of drugs.
Palliative care is an approach that focuses on the symptoms people experience that affect their quality of life. It doesn’t see patients through the lens of one particular organ — for example the heart or lungs — but rather assesses individuals holistically.
In doing so, it comes to understand what is important to a person; and often this is not necessarily living longer, but living better during the time they have.
Palliative care helps people live better by treating pain, breathlessness, depression, nausea, fatigue and more, and by seeing patients as people beyond their disease.
It also offers support to family and carers, who are otherwise frequently neglected. Palliative care can make a huge difference to a person’s quality of life for many months — and in some cases even years — before their death.
Unfortunately, palliative care can be hard to obtain.
There are no dedicated palliative care beds in most major hospitals and in-home palliative care is under-resourced; with most of the care being done by families.
Husbands, wives, mothers, fathers, daughters, sons, sisters, brothers and old friends: these unpaid carers overcome their grief and remarkably assume the roles of nurse, doctor, pharmacist, cleaner, and cook.
Although palliative care can support someone to die at home, the challenges are significant. And coupled with limited in-home assistance and fear of aged care, people are finding it harder to stay at home despite their desire to do so.
Yet, if you choose to die via VAD in NSW for example, you will have a dedicated navigator, two doctors and a pharmacist willing to travel to your home. This level of service doesn’t exist for any other situation.
All patients would do well with a dedicated navigator in our fragmented system that leaves patients to flounder between hospital and home, general practitioners and specialists, and between differing specialists. The communication gaps in the system are enormous.
But concerns about how being a burden contributes to people’s suffering and how ill-equipped our health system is, are being drowned out by the panacea of VAD.
And advocates seeking to improve the current system are ironically cast as immoral and wanting to prolong suffering.
It is worth noting that the existing problems and gaps in the system will remain for those who choose not to go down the VAD path. VAD is not a perfect substitute for good palliative care: Voluntary Assisted Dying is not ‘Compulsory Assisted Dying’, after all.
Opposition to VAD from religious institutes has also received public lambasting. But much of the care provided to the elderly and dying in Australia is from religious institutions, including a quarter of the nation’s aged care beds.
These organizations have for decades strived to provide care to some of our most vulnerable; and in some cases are responsible for forging palliative care as a discipline with its driving purpose being to alleviate suffering.
They do have a legitimate stake in this debate and navigating these moral issues is more complex than simply demonising these institutions, and the staff who work within them, as heartless.
Unfortunately, the opportunity to raise the profile of palliative care seems to have been wasted. The shortcomings in the system are unlikely to be addressed and genuine conversations about dying will likely be missed.
Simon Cowan is Research Director and Dr Jessica Borbasi is a medical practitioner and an adjunct fellow at the Centre for Independent Studies.
Photo by Kampus Production