Can palliative care and voluntary assisted dying coexist?
In the debate about voluntary assisted dying, there is no issue that has loomed as large as palliative care. The most common argument goes something like: “We don’t need assisted dying, what we really need is better funding for palliative care”. But is it actually an either/or scenario?
Professor Ian Maddocks doesn’t think so.
Asked whether an assisted dying law would compromise palliative care, Maddocks strongly disagreed. “I think in fact it complements it”, he said, “it gives a new opportunity to palliative care”.
Maddocks is considered the father of modern palliative care in Australia, serving as the first President of the Australian Association for Hospice and Palliative Care and first President of the Australian and New Zealand Society for Palliative Medicine. He was also a key member of the expert panel that produced the recommendations that form the basis for Victoria’s assisted dying bill.
Legalising assisted dying, even in very limited circumstances, removes an often counter-productive taboo, said Maddocks: “It enlarges the opportunity for free and open and compassionate conversation in situations when people are facing uncomfortable death”. And just as assisted dying would play its role in palliative care discussions, Maddocks was adamant that palliative care be an essential part of the assisted dying process: “There is no doubt that palliative care must continue to be made available to people even if they choose to go down the path of assisted dying”.
Some groups remain unconvinced that assisted dying will improve palliative care. Most palliative care services have been strongly and consistently against the proposed laws, with some attacking Maddocks for his views on the subject.
He put much of this opposition down to religious ideology: “The modern hospice movement was very much driven by people who were closely connected with the Church, for example the Sisters of Charity,” said Maddocks, referring to the organisation behind St Vincent’s’ network of hospitals and aged care facilities. “It’s a bit of an elephant in the room, because most people, when they argue from palliative care about assisted dying, don’t say: ‘Well the Church doesn’t allow it.’ They find other reasons for why they object to it”.
Maddocks added that many palliative care workers see assisted dying as a criticism, a position that he sympathised with. “You must remember,” he said, “palliative care was a grass-roots movement that fought its way from outside medicine”. Yet he expressed frustration at the idea that only palliative care workers can do what they do. “A lot of aspects of palliative care are just ordinary good medicine,” he said, but “they don’t want to see that sort of special status eroded”.
Opponents of the Victorian legislation have argued that assisted dying wouldn’t even be discussed if palliative care were universally available. Yet Australia has the second best end-of-life care in the world and a palliative care system that has always been generously funded. The problem isn’t a lack of funding, so what is it?
Perhaps, with an aging population, we need to reassess our attitude to health care and end-of-life care in particular. “Medicine these days is far too focused on its procedures, on its success in diagnosis,” said Maddocks, “and it’s not all that good at care. It’s not all that good at listening to the various difficulties and problems, the existential problems, the emotional problems, the family problems, that gather around severe illness”.
Something as simple as clarifying the goals of care with a patient can be invaluable, but there must be complete transparency from the doctor. This is where having the issue of assisted dying out in the open is so important, said Maddocks. “To have this quite open, I think is very consistent with the way we try to operate in palliative care … it allows much better, free acknowledgement of the options”.
Dying can be a very lonely experience. Asked about how he helps patients through this, Maddocks said: “I hold a lot of hands I’m afraid”. Many patients mention control as a big part of what would contribute to a ‘good death’. In Oregon, a third of those prescribed assisted dying medication don’t end up using it, yet it gives them some measure of control over the manner of their death.
Rather than looking at active care and palliative care and assisted dying separately, Maddocks said they should all be seen as part of good end-of-life care. “I’m very much of the mantra: ‘Palliative care is everybody’s business’, and all doctors, all health practitioners, should be better prepared to take their place in palliative care services”.
Medicine, said Maddocks, has become far too hospital focused, which is a big problem for end-of-life care. “Most people want to die at home”, he said. But this doesn’t mean that doctors should outsource their care at such a crucial time, rather: “[Doctors] ought to look after people where they want to be, which is usually at home”.
For Maddocks, the whole issue comes back to patient care and medicine’s role in looking after each patient’s needs. End-of-life care has become the flash point for this issue mainly because patient care is most poignant when time and options are limited. Voluntary assisted dying has brought things into even sharper relief. “It’s good that people are talking about it”, said Maddocks, adding that all end-of-life care should become a part of medicine: “I think it is really part of medical responsibility to care for people right through to the end”.
Far from being antagonistic or competing approaches, palliative care and assisted dying are just two examples of what Maddocks would call “ordinary, good medicine”. That, he said, can only be a good thing.