[As was first published in ‘Insight’ by author, Odette Spruijt]
TRUE to expectations, the results of the first 12 months of Victoria’s voluntary assisted dying laws have been presented in the media as an argument for the removal of some of the safeguards of the initial act. The narrative provided is one of unrelieved suffering unless more people are able to access this option more easily. This narrative would have us believe that “if not voluntary assisted dying, then devastating deaths are the only alternative”.
As a palliative care specialist with over 25 years of practice, mostly in Victoria, I have found the institution of the Victorian law to have a devastating effect on my practice of palliative medicine. I have witnessed the devastating impact of this law on the cohesion of teams, on the relationships within clinical units, and as a cause of deep moral distress among many of my medical colleagues, for whom this law, and its accompanying narrative, is anathema to the very core of our sense of what it is to be a doctor.
I am very aware that many doctors have reconciled the law on the basis of patient choice, and I am also very aware that palliative care is not a panacea for all suffering. That would be a ridiculous claim, especially since the majority of people who access voluntary assisted dying (VAD) worldwide do so not for the relief of physical suffering, but rather because of loss of ability to engage in meaningful life activities (82% in Canadian cases of assisted suicide). Loneliness (13.7%) and concern about causing burden to those they love (34%) were also prominent in the list of reasons for requesting assisted suicide in this Canadian report. Such suffering is not within the realm of medical practice alone to alleviate, but calls for an examination of what we as a society understand as a life worth honouring and living.
True, many who access VAD do so from a position of deep conviction, and a determination to avoid the debilitation of life-threatening illness, frailty and decline. It is completely understandable, perhaps universal, to hold such a position. None of us welcome suffering of any sort. However, to cross this Rubicon and create a social order in which state-sanctioned and assisted death is normalised is to put all our lives in danger.
During this coronavirus disease 2019 (COVID-19) pandemic, many have celebrated the creative ways in which communities have worked together to support the elderly, the vulnerable and those who are most affected by many of the consequences of physical distancing. We grieve the sense of social abandonment of the elderly in aged care facilities. We have recognised more deeply the importance of community caring. This is the spirit that can transform the suffering of many people approaching the end of life, facing isolation, loss and grief, dependence on others and physical frailty. That is the time when our mettle as a society is most needed, our insistence on reasserting the value of each person, no matter what their physical state might be.
To regard those who are at the end of life as if they come within a different category of human, that the sanctions on deliberate ending of life that we (so far) accept in other stages of life no longer apply, is to fundamentally change our value system at its core. It is not enough to talk about patient choice as if autonomy means “only me”. Autonomy is also relative, we are relational beings, we depend on each other, and what we do affects each other. Again, the pandemic has emphasised this very clearly, that our actions, responsible or otherwise, affect those around us tangibly, for better or worse.
While I try to avoid the slippery slope terminology, I see so much evidence of this in the attitudinal creep associated with the implementation of VAD that I find it hard to not adopt this metaphor. The slippery slope refers to the normalisation of these practices as much as to numbers of people who are assisted to die. I have seen this in my workplace, as those of us who express objection to VAD are challenged as uncaring, dogmatic, and confrontational, as our views as conscientious objectors are not respected. I have seen it in the documentation of “consider VAD if appropriate” in a clinical note on a patient with recurrent cancer who survived a suicide attempt. That note was written by a junior inexperienced doctor, but it echoes the growing sentiment of normalisation and acceptance of this practice for the relief of suffering.
I experience it in my new hesitation to invite open discussion about end-of-life care wishes, for fear that this will be interpreted as an invitation to discuss VAD, with which I cannot engage. Previously, this discussion took place in a secure space of “even if I (patient) wished for this, I know you (doctor) cannot do it and will do all you can to help relieve my suffering”, whereas now there is uncertainty as to what I am saying or meaning and what the patient is saying.
The elephant in the room is now enormous.
I feel deep distress when I see junior doctors respond to patients’ expressions of a wish to die by beginning the VAD process. There is no longer the mental health review, no longer the palliative care pathway, now there is just the simplistic acceptance that a wish to die in a person with life-threatening illness can be taken at face value and acted upon. And that those of us who express a different response to end-of-life suffering are berated as obstructing the patient’s free choice. If we follow The Age article’s narrative, our duty now is to grant this wish with expedition, without question or exploration of the many and often complex factors leading to this request.
Palliative care doctors — the professional group of medical practitioners with which I am most familiar — are taught to be reflective practitioners and to avoid imposing their values on their patients. They aim to be good listeners and to validate the patient’s experience and wishes. The quality of communication, the intersubjective dynamic, is very specific to that particular interaction. This is one of the main reasons that I fear VAD.
How can I be sure that my exhaustion, my anxiety, my discouragement, my fear of my own mortality, as well as my value system and the limitations of my knowledge are not adversely influencing this patient in their decision making? Just as I examine these relational dimensions of my practice, so I wonder about the intersubjective dynamic between consenting and consulting clinicians and the patients they see. How do they ensure that they are not influencing or being adversely influenced by the interaction? No legislation, with its accompanying rulebook, can detect the subtleties at the depth of these clinical interactions.
This VAD system in Victoria and elsewhere has been set up as if this relational dynamic does not have any bearing on the outcome of the consultation, that the doctor can be impartial and the patient (who may likely be at one of their most vulnerable and fragile times of life) can also be impartial and unaffected by the doctor. If that is indeed the dynamic, then why bother with the medical consultation at all? Dispense with it altogether and let people take their lives unimpeded by so-called safeguards. It is after all, not a medical encounter if the doctor is there only to complete the required paperwork.
In my more cynical moments, I wonder if involving doctors in the processes of VAD is merely to bring a veneer of respectability to the taking of human life by VAD. Doctors and health professionals continue to be held in great respect by society, as witnessed during the COVID-19 pandemic, where their efforts to save lives and be with people who were dying from this disease are highly valued. This trust underpins the practice of medicine and the professional relationship.
What will be the impact of VAD on this trust?
The article in The Age cites Go Gentle Australia chief executive Kiki Paul’s observation that:
“There has been a relatively low number of doctors, particularly specialists, who have undertaken the mandatory training [for VAD]”.
Ms Paul also is cited as urging the state government to embark on an education program in order to attract more doctors to complete the training.
With respect to the low number of doctors undertaking training, I suggest this reflects the reticence, largely unarticulated, that many doctors have about VAD. We hear from those who promote and advocate for VAD, who appear more enthusiastic about engaging with the media. Many other doctors are less forthcoming of their reservations, for fear of organisational rebuke, the emotional toll of taking a public stand against VAD and out of a recognition that this issue can be a major distraction from the day-to-day commitment to providing best possible care for their patients.
Regarding Ms Paul’s exhortation for state government education campaign, as a palliative care doctor, to see the demand for even more Department of Health and Human Services funds devoted to the promotion and implementation of VAD, is of great concern. I am acutely aware of the many gaps in the understanding and provision of palliative care in Victoria and nationally.
Instead of a VAD campaign I would ask for a mandatory palliative care education program for all doctors who care for patients with life-threatening illness. I would also advocate for the annual demonstration of competencies in communication skills, symptom management, end-of-life care and advance care planning skills, all of which are generic skills for clinically active doctors engaged in the direct care of patients, regardless of professional discipline.
Perhaps if these skills were more widely evident in our medical profession, the confusion about what is now possible to achieve in the care of patients with serious illnesses approaching the end of life, without resorting to VAD, would be lessened and the demand for VAD itself might also lessen.
The limits and safeguards so often emphasised by our health minister and VAD lawmakers when instituting our current law, will continue to be eroded. In The Age article, Dr Rodney Syme limits his focus in June 2020 to those who are not Australian citizens, saying that widening the eligibility to these residents would be the “one thing I could change immediately about the laws”. It will be interesting to monitor how his focus evolves in the coming months and years. Such extension is evident in the international assisted suicide trajectory. For example, the federal government of Canada tabled Bill C-7 in February 2020, proposing changes to their legislation, which include removing the eligibility requirement for a reasonably foreseeable natural death, allowing anyone who is suffering intolerably but not dying, to be eligible for medically assisted dying. Likewise, here in Australia, I expect that there will be more examples cited of people who die sadly and outside the “comfort” of assisted dying laws, more arguments raised for further extension of access to VAD, with a further slide down the slope of recalibration of our humanity.
Associate Professor Odette Spruijt is a palliative medicine specialist and founder and chair of Australasian Palliative Link International (APLI). She is affiliated with the Faculty of Medicine, Dentistry and Health Sciences at the University of Melbourne.
The upcoming Report of Operations from the Voluntary Assisted Dying Review Board is due to be released on 19 August 2020, and will be published on the Safer Care Victoria website.
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.
