Assisted dying versus palliative care: do we all have a real choice?

Stephen Duckett looks at the case for increased palliative care funding

October 27 2017If the terminally ill are to have a genuine choice about whether to die or receive palliative care, then adequate palliative care must be available. Yet sometimes this is not the case, argues Professor Stephen Duckett, Health Program Director at the Grattan Institute.

Assisted dying is one step closer in Victoria with the passage of the authorising Bill through the Legislative Assembly. It is being debated in the Legislative Council in the first week of November.

Both proponents and opponents of the Bill have made much of their support for palliative care. The Bill, for example, requires a person considering assisted dying to be advised of the “palliative care options available to the person and the likely outcomes of that care”. One of the principles included in the Bill is that “individuals are entitled to genuine choices regarding their treatment and care”. Information is important and useful, and an entitlement to choice also has value, but what if services just aren’t there? A right to choose palliative care vanishes if there are no, or only inadequate, palliative care services to choose.

As members of the Legislative Council consider assisted dying legislation, they should also ensure that every terminally ill person in the state can get good quality palliative care if they want it.

Assisted dying is contentious, but access to palliative care should not be. The debate so far has been strong on support for enhanced palliative care. This welcome rhetoric now needs to be translated into effective policies – and more money.

Palliative care is an important part of end-of-life care. A study in the prestigious New England Journal of Medicine in 2010 showed that people who received palliative care as they were nearing death actually lived longer than those who pursued an aggressive treatment path. A Grattan Institute report in 2014 showed that increasing investment in palliative care would lead to better care and could save money.

In light of these facts, one would think governments would do all they could to ensure palliative care is available to all who need it – and in particular to put funding of palliative care on a sound footing. Sadly, that is not the case in Australia today.

In Victoria, funding for out-of-hospital palliative care is currently allocated according to a formula based loosely on the notional population served by the relevant palliative care organisation. What that means is that if a palliative care organisation provides more services, or looks after more people who are at the end of their life, it does not get extra money. There is no incentive for these organisations to seek out and help people who might benefit from palliative care. It is possible that Victorians are missing out on palliative care because of this poor funding design.

Although state budgets are limited, the lid on palliative care funding should be lifted. The risk of a budget blow-out is slim. After all, palliative care is for the dying, and the number of deaths is increasing only slowly.

Funding for palliative care should be put on the same basis as funding for most other parts of the healthcare system; that is, palliative care organisations should get paid for the services they actually provide. Unlike other parts of the system, palliative care funding should be uncapped. The aim should be that everyone who needs palliative care gets it, and that no one is excluded because of budget limitations in a particular service.

Of course, removing the cap on palliative care funding should be accompanied by a push to ensure that the money is not wasted on inefficient or poor-quality services. A new funding regime should be based on the requirement that services are provided efficiently – in other words, at or below national efficiency benchmarks. A broad suite of indicators should be used to assess the performance of palliative care organisations. The results should be published regularly, with bonuses paid to good performers.

Whatever parliament ultimately decides, our politicians should commit to making palliative care available to all who are terminally ill.

Dr Duckett is also Vicar’s Warden at St Peter’s Eastern Hill.

An extended version of this piece was published in The Conversation on 24 October.

See also "Why the vulnerability of dying need not be feared" by Professor Dorothy Lee