Keeping palliative care and VAD untangled

SUBSEQUENT to the publication of my previous article on palliative care and voluntary assisted dying (VAD), I discovered that a significant misprint had crept in between proofs and publication. Rather than 5%, it should have read: “In Oregon over 90.5% of patients who utilised VAD in 2018 were under the care of hospice, with similar figures in the State of Washington.”

The error has since been corrected online, but it reminded me that palliative care providers will have to deal with their duty to continue to offer their services to those people who avail themselves of the right to VAD right up until the time of their death.

This article explores the nature of the relationship between palliative care services and VAD, including the issues raised in the responses to my previous article.

Some years ago, the biennial Australian and New Zealand Society of Palliative Medicine (ANZSPM) conference coincided with a State Parliamentary debate on VAD. A number of our members were very keen to stage an ANZSPM protest outside the Parliament building just up the road. Several of my colleagues nudged me, as a former ANZSPM president, to speak up against that plan. I stood up and pointed out that ANZSPM did not have a policy opposing voluntary assisted dying and that protesters could not speak on behalf of all the members. It was then that I first realised that there are more supporters of VAD in our specialty than it seemed at first glance.

My recent article elicited a number of responses and several of you contacted me directly.

First, your observations, as well as earlier direct conversations with a number of colleagues who do not oppose VAD, confirm my perception that a significant number of specialists in palliative medicine do not oppose VAD but feel that in their current roles it is not appropriate to voice their opinions. Several have told me that they support VAD but “please don’t ask me to do it”. This does not preclude their engaging in a working relationship with the providers of VAD.

Additionally, from your responses, many of you seem willing to engage in a constructive discussion about how best to introduce VAD where it is legalised.

A decade or so ago I was surprised to see a post on a website (I can’t remember where) suggesting that only Christians should provide palliative care. I believe that palliative care should embrace as its providers any people with appropriate skills and training (technical and interpersonal), irrespective of their beliefs.

Some supporters of VAD have suggested that my Venn diagram of the relationship between palliative care and VAD should have the VAD circle intersecting with that of the scope of the clinical practice of palliative care. At the same time, it seems that some of those who oppose VAD have already incorporated that opposition into a Venn diagram as part of the content of their “palliative care circle”.

Even while I support VAD, as argued in my previous article, for a variety of reasons I believe very strongly that it should not be encompassed within the scope of the definition of palliative care. The World Health Organization definition includes the statement that palliative care “intends neither to hasten or postpone death”.

This phrase does not support or oppose VAD from within palliative care, but allows clinicians of all VAD persuasions to continue to practice the whole of the art of palliative care without having to compromise their beliefs.

When palliative care itself is VAD-belief neutral, patients do not need to be aware of the beliefs of their palliative care clinicians because these should not be relevant to the care that is provided within palliative care. This of course requires understanding that the practice of palliative care is not defined from within, or owned by, any particular belief system and supports patients to find meaning on their own terms.

The consequence of not embracing a neutral position is that some highly skilled clinicians might feel railroaded into a position they do not support, or, feeling trapped, could abandon the field to the detriment of patients, families and their colleagues.

The relationship between palliative care and VAD is also an issue for patients and their families. Our community here in Australia comprises people with a rich variety of belief systems and we are currently engaged in a debate about freedom of expression in the context of religious beliefs. The debate seems not yet to have reached the realisation that it will have to define religious belief (search “census Jedi Knight”) and/or incorporate equal freedoms for both non-mainstream belief systems and the areligious.

I am fairly sure that few of us would want VAD to become mired in that discussion, particularly as attitudes to VAD in the general community do not seem to correlate well with professed faith. Over my years of clinical practice, I have found that in a context of generally unspoken respect for one another’s beliefs, diversity of belief has almost never intruded into the delivery of quality palliative care as it is defined.

If VAD and specialist palliative care did become conflated, it seems likely that a not-insignificant proportion of the members of our diverse society could become very wary of palliative care. I think that this risk would be particularly important for disempowered members of the Indigenous and immigrant communities, the culturally isolated and those for whom English is not the primary language.

So how should we deal with the legalisation of VAD?

I believe that the vital first step is recognition of the need to respect sincerely held individual personal beliefs. This applies to everyone equally. Arguing over deeply held beliefs is a fruitless exercise and never produces a “victory” for either side. Just as many clinicians support VAD with deeply held conviction, opponents of VAD are equally committed to their views.

Palliative Care Australia recently produced a report on the introduction of VAD in North America. The report found that while, inevitably, there were tensions and some conflict, once legislation had been passed communities were generally able to engage in respectful discussion and work constructively to create effective systems for VAD that met the requirements of the law.

Many highly skilled and committed palliative care clinicians would be very distressed if they were forced to accept involvement in the provision of VAD. Where VAD has been legalised, clinicians providing palliative care should be supported to continue to provide the entirety of palliative care to their patients irrespective of whether or not they choose to also participate separately in the provision of VAD within the law.

Wise and experienced practitioners of palliative care, both those who oppose and those who support VAD, recognise the limits of what can be achieved by even the best of palliative care and also understand that some patients will choose VAD in spite of their efforts – that a request for VAD does not reflect a failure on their part. Additionally, they will also act respectfully towards their colleagues who have different views on VAD.

In some ways, the greatest challenge will be for the many organisations providing palliative care in those places where VAD has been legalised. They may be confronted by the expectation that they provide access to VAD as a legal part of normal health care. Additionally, they will have to deal with their employees across the same spectrum of beliefs as the rest of the community, some of whom may not agree with the choices that their employers make. Public organisations might generally be expected to provide services that are legal. On the other hand, private organisations may choose to exercise their right to provide only the services that match their values while also having to deal with the rights of their patients to undertake activity that is legal.

While it is far too early to comment on the outcome of the implementation of VAD in Victoria, there are a number of examples from elsewhere that are informative. In addition to the Palliative Care Australia report, I suggest that you read the annual summaries from Oregon and an article in the New England Journal of Medicine from 2013 that describes how a large comprehensive cancer centre managed introduction of VAD following its legalisation in the US state of Washington. Having recognised that they would be likely to have to deal with requests from their patients, they embarked on a measured consultative process to design a program that met requirements of the law.

I believe that there should be a clear delineation between specialist palliative care services and the organisational mechanisms for provision of VAD. Clinicians providing palliative care have a duty to respect their patients’ choices and to establish effective working relationships with the providers of VAD so that patients can obtain what is their right within the law. The decision of a patient to opt for VAD does not negate the obligation of clinicians to continue to provide ongoing palliative care until they die, nor can palliative care services ignore the risks to those who might become fearful and refuse referral for effective care at the end of their life if they believe palliative care and VAD have become enmeshed.

The effective functioning of our complex health system relies on respect for the diversity of our values as individuals and as organisations. In times of significant change, and particularly when dealing with deeply embedded and fundamental beliefs, it is vital that that we work collaboratively to create effective working compromises. When we health workers are in conflict, it is usually our patients and their families who suffer.

Dr Will Cairns OAM is on the verge of retirement from his medical career, first as a GP, and subsequently as a specialist in palliative medicine.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.