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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.
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Is palliative care about the patient’s distress or the doctor’s distress? Discuss…..
Interestingly I have had a very different experience to the one Odette describes when a person I have cared for asks for help to end their life. I feel that the elephant in the room has finally been named and now we can all acknowledge that death is approaching, and focus on making the most of living.
I have found the request for VAD allows for an honest and open discussion as to what aspects of their life are unacceptable to them and what can be done to improve these.
Life is precious, time is limited. Focusing on what is important is the priority.
As someone who recently was about to commit suicide with barbiturates during a recent suicidal crisis and who subsequently flushed the barbiturates down the toilet, I would like to highlight the inherent risks of allowing far greater access and provision of these drugs to all and sundry. With easy access to these drugs, suicide is just too easy. I suffered a sudden hearing loss in my right ear upon waking up and on the same day an emergency department doctor refused me the steroids I needed to save my hearing. This traumatic experience almost cost me my life and has has almost certainly cost me my mental health. Miraculously my hearing recovered but I was so terrified that the emotional trauma of this incident could have easily led to me taking my own life anyway. It is VERY dangerous for anyone to have these drugs just lying around. I am a 41 year old man and the thought that someone like me, in a desperate and vulnerable position could have so easily killed themselves is just tragic and heartbreaking. I am literally crying as I write this. Please listen to me. Dr Symes and all VAD advocates, please just listen to me. I cannot emphasise enough just how dangerous this idea is.
“I feel deep distress when I see junior doctors respond to patients’ expressions of a wish to die by beginning the VAD process.”
Under the VAD legislation junior doctors are not allowed to initiate the VAD process. Only doctors with a fellowship can be involved.
Thanks for your thoughts.
I think it’s important to highlight the profound difference how the term ‘End-of-life-care’ is now understood by the VARB in Victoria and by NSW Health.
In NSW Health, ‘End of Life-care’ is used with its traditional meaning, and includes many important aspects of care in the dying process (“Care is person centred; There is recognition and support for families and carers; There is access to care providers across all settings who are skilled and competent in caring for people requiring end of life and palliative care; Care is well-coordinated and integrated; Access to quality care is equitable”
“End of life care: The care delivered to improve the quality of life for people who have a life limiting illness, as well as their families and carers/End of life care ensures the appropriate support and palliative needs are provided to the person so they live as well as possible until their death/ It recognises end of life care is the responsibility of everybody” (https://www.health.nsw.gov.au/palliativecare/Pages/eol-pc-framework.aspx p 34).
In stark contrast, in Victoria the VARB uses the term with a narrow and restricting sense…the “End of Life Care Team… co-ordinates…[p}olicy and guidance for health services, professionals and the community to support voluntary assisted dying”. (Voluntary Assisted Dying Review Board Report of operations June to December 2019 p.4).
I wish to emphasize the vital importance of carefully defining the use of terms to reduce the possibility of misunderstanding. In NSW at least , patients and families often require education and discussion about what end-of-life care means, and reassurance that palliative care is not a ‘death sentence’ before a referral is agreed to. Community understanding in NSW is improving, and the NSW policy is remarkable in its inclusivity and breadth of care. It would be a great shame if equivocation in Victoria results in an increase in fear in NSW.
An excellent book that I highly recommend is “This Life: Why Mortality Makes Us Free” by Swedish philosopher Martin Hagglund. It’s only when we free ourselves from underlying religious biases that we can free ourselves to truly serve the wishes of our patients. A challenging read, but well worth the effort.
Thank you for all the comments generated by my article. Thank you to those who responded with generosity and an openess, and to those who recognised the “pain in your voice and the anguish too”, that this was a reflection, not an attempt to dissuade those whose minds are made up.
I wrote this article to offer a medical voice as this has been largely silenced by the very vitriol and accusations generated by my article. I wrote it in a medical journal and am interested in the interest this has generated from non-medical respondents. Their indignant diligence in attempting to silence every voice which speaks contrary of their view is striking.
To those who think that as a doctor, I am not prone to medical illness, death and suffering myself, you are mistaken. I speak not only as a palliative care doctor but also as someone who has also faced a life-threatening illness, cared for an elderly parent who died in her own home, and nursed a close family friend who died in our home.
To Dr Syme who accuses me of cherry-picking in my use of data and statistics, I would claim the same in the way you have drawn upon the palliative care evidence base to prove that palliative care fails patients and that VAD is the solution to the shortcomings of end of life care in our health care system.
To medical colleagues who discount the importance of recognising and paying attention to moral distress, there is a significant literature linking this to burnout, compassion fatigue, suicide and loss of workforce. It is not a trivial concern. To my other colleagues who are considering leaving the medical profession, who tell me they will never recover from the legalisation of VAD, I share your distress and know that it is very real.
Associate Professor Odette Spruijt article is of great interest but does it represent the palliative care physician’s view or the patient’s view? Is it a balanced viewpoint?
Several of her points suggest it is limited to the palliative care physician’s view. For example, a call for ‘…a mandatory palliative care education program ‘ and ‘….annual demonstration of competencies’ – really? Also, “Palliative care doctors —are taught to be reflective practitioners and to avoid imposing their values on their patients.”
These points lead me to believe that the article presents the viewpoint of a craft group that feels threatened by a new approach to patient care. In other words, a turf war.
Is this perceived threat compounded by the right of doctors to be conscientious object to participating in VAD? She states an apprehension that their “…views as conscientious objectors are not respected”. But is this a two way street? Do patients who would request VAD have a right to be heard?
My recent experience as VAD practitioner [not a palliative care physician] surprised me. There are palliative care physicians who do not respect patients’ engagement with VAD. Moreover, once a patient has VAD in their possession these palliative care physicians [and geriatricians] remove themselves from caring for the patient should they choose to take VAD. Is this is a step beyond conscientious objection? In this ‘turf war’ who will lose? More than likely, the patient.
My concern is the lack of ethnic and cultural representation relating to Voluntary Assisted Dying by Palliative Care Specialists , General Practioners and the broader organisations whom advocate for VAD. Many individuals who are dying in degrading and often unethical and unacceptable circumstances stem from a Non English Speaking Background. My Father died in circumstances that are unpalatable- even to his own medical team, let alone myself and my family. In should be compulsory to have Advocates and Medical Staff engage in open and honest dialogue- even if questions the personal values of Practioners or others. This area is bigger than everyone of us. There is an enormous barrier of judgement and discrimination predominantly due to organisational structures and misunderstandings . An ethos of inclusivity and open minded client centred approach with Allied Health Care Professionals, Advocates the Dying Individual and their family, from a Non English Speaking Background must be adopted to inorder to have Voluntary Assisted Dying Legislation that is equitable and accessible in not only it’s eligibility criteria and safeguards- but in ensuring a diverse multicultural community is represented in this monotonous circle of self indulgent debate. People are dying in circumstances that Clinicians are willing to accept. This is outrageous and therefore to postulate otherwise is conceited and disrespectful to dying people and their families. Zero Discrimination.
Thankyou for this thoughtful article. The well founded point that this article makes is that VAD is not just a personal choice but is profoundly changing society for everybody in some way. It’s also clear that some of these responses have been coordinated by euthanasia advocates.
Now that we have an option to die quicker, let’s go back to working together on the option to live and die with good care. Especially in the disability and aged care sector.
Voluntary assisted dying IS part of good palliative care because, as many dying patients testify, just knowing VAD will be provided if needed considerably relieves anxiety and distress at the prospect of an uncomfortable death. Relief of this distress is part of palliative care.
If discussion of VAD is avoided, the patient is denied this relief, and the palliative care may be inadequate.
We care for a multicultural community, with all shades of belief and practice. My job as a doctor is to use whatever skills I may have to help the patient make the best of the hand that she/he has been dealt IN THEIR OWN TERMS, which will almost necessarily not be mine.
We have a very privileged position and a lot of power, power which has frequently been abused to restrict patient choices ( think abortion, contraception etc )
It is absolutely inevitable that we will experience moral distress from time to time. It is a necessary part of the package and the only way to avoid it is either not to sign up at all or to practice purely according to one’s own whims, to the great detriment of patients. This is a fundamental betrayal.
If I claim never to have done anything which I thought wrong I am either lying, not paying attention, practicing in a VERY boring discipline or am a dangerous zealot.
What is more important? Our ‘right’ to avoid moral distress or our duty to use our skills to help patients in their own terms.
Professsor Spruijt ‘cherry picks’ data from the Canadian MAID report. She declined to record that 57.1% of requests were because of “inadequate control of symptoms other than pain”. She does not state that 82.1% of MAID recipients in Canada were in receipt of palliative care and it was available to 89% of those who chose not to use it. Further 20.6% of MAID assistance occurred in palliative care settings, and 9.1% of MAID assistance was provided by palliative care physicians. One who provided MAID, Dr Sandy Buchman, a palliative care specialist of 35 years experience, and then the incoming president of the Canadian Medical Association, has helped over 20 people, and stated “I found that because it felt so right and so consistent that I haven’t experienced anxiety, regret or any negative emotions. In fact, I’ve felt that I have helped my patients in ways that I could never have helped them before, I feel better about it as a physician, as a professional, to be able to finally alleviate their suffering”. It’s time for Australian palliative care to reflect.
I am sorry, but how “devastating” to the palliative care industry can 52 deaths be, out of the thousands who die of cancer alone each year in Victoria, not to mention MND and MS? People who request VAD are not suffering a “life threatening illness”, they are in the process of dying! Two doctors must certify that they have less than 6 months to live. Revisit this situation when you have suffered 12 months of cancer treatment and are facing a painful and drawn out death. You will then be walking in the shoes of those patients whom you seek to deny the option of a painless death surrounded by their loved ones. I would be interested to hear what choice you make then. I am 71 years old, so far healthy, but I watched my mother and sister (both living in Victoria) die of ovarian cancer, aged 50 and 58 respectively. Unfortunately, I live in NSW.
As an actual individual “living with terminal metastatic breast cancer” – I am tired of listening to the views of every man and his dog with the exception of the individual who will, ultimately, traverse the road to death. I have spent 3 years lobbying hard for change to legislation. I have spoken to so many people who are also advocates because of their experience of losing a loved one through a traumatic death. I nursed both my parents through deaths you would not wish on your own worst enemy. I refer to the recent comments by Mark Jarmon-Howe, CEO of the UK’s largest Hospice: “People with a terminal illness are not choosing to die, they are already dying. Assisted dying offers an individual with a terminal illness and clear prognosis to have some say in the timing and place of their death if they want it … Like all fields of medicine, even the very best palliative care has its limits. That isn’t failure – it’s reality.”
You are clearly imposing your views on your patients when at their most vulnerable and I find this abhorrent, and hope to never fall into the “care” of doctors like yourself, who cannot accept that a quick death is often the kindest way. If you cannot see that life for some is not worth living, then perhaps you cannot understand the extent of your own privilege. Your article has angered me immensely. Time to retire?
A/Prof Spruijt is correct to say not every terminally ill person will have a devastating death (Assisted dying: push for removal of safeguards alarming, 3 Aug 2020)
Go Gentle Australia has always acknowledged that Australia’s palliative care is excellent, among the best in the world. But perhaps Ms Spruijt is unaware that Palliative Care Australia itself admits it cannot help EVERYONE. By their own reckoning, they are unable to meaningfully help around 4% of their patients. This translates to hundreds of people each year in Australia
A/Prof Spruijt then goes on to misrepresent statistics about the reasons people give for choosing VAD in Canada, conveniently forgetting to mention the first and foremost reason: they are dying and want to avoid prolonging their suffering.
She further asserts: “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”.
This is alarmist and inaccurate.
The legislation in VIC (and WA) very clearly states if mental health seems a factor in the decision to ask for VAD, the patient must be referred to a mental health professional. All treatment options are to be discussed – but it has always been a patient’s right to refuse certain treatments. While palliative care is excellent, some people, for whom PC can achieve very little (such as when they are in the end stages of MND) may not want to engage.
“A simplistic acceptance” belies the thorough process, laid out in detail in the legislation, that a patient must undertake to obtain a prescription. It is a process which, on average, takes 3-4 weeks and is certainly not easy. And neither is the decision to take the medication. A/Prof Spruijt’s assertion of “simplistic acceptance” is also insulting to terminally ill people who know exactly why they want to access an assisted death and would never describe the decision as “simple”.
A/Prof Spruijt worries about the “devastating effects” of this legislation. Yet neither in Belgium/the Netherlands (which have very different legislation to the Australian model) nor in Oregon, where very similar legislation has been in effect for some 23 years, have these effects been observed.
Palliative Care Australia, in their own report in 2018, admitted that in international jurisdictions where VAD has been enacted, palliative care and hospice services and funding have generally improved. At the same time, the OECD reports that confidence in the medical profession has increased.
Last, but not least, A/Prof Spruijt is very concerned about “the safeguards that will continue to be eroded”. There is no evidence this is the case in jurisdictions where VAD has been legal for many years. But before we look at that any further, let’s look at how the Victorian legislation came into being.
It was the result of a comprehensive Parliamentary Inquiry, followed by extensive consultation by an Expert Ministerial Advisory Panel. The Bill was then scrutinised in Parliament during over 100 hours of debate. After it passed, conservative think-tank the Institute of Public Affairs and the Progressive think-tank Per Capita both awarded this legislation top marks and a model for evidence based policymaking (https://ipa.org.au/wp-content/uploads/2018/10/IPA-Report-Evidence-Based-Policy-20-case-studies.pdf) (which lies at the core of our democratic society). Some laws change, others stay the same for a very long time, as is generally the case with VAD laws.
A/Prof Spruijt is clearly not in favour of VAD laws, and worries about exhaustion, anxiety, discouragement of the physician and how they may influence the patient in their decision making. No doctor is required to participate if these matters are insurmountable obstacles: both access and participation are VOLUNTARY.
However, a physician’s concerns should not stand in the way. Where in this dynamic is the terminally ill person whose suffering cannot be relieved? Go Gentle Australia advocates for them.
I feel that under ‘conflicts of interest’ when writing these opinion pieces, authors should indicate their religious beliefs. As to my own opinion, I can do no better than to quote the words of John Stuart Mills and Bob Dent. The former wrote that “The only purpose for which power can be exercised over any member of a civilised community against their will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant.” And the latter, the first person to take advantage of the original Northern Territory legislation, in a submission to federal parliament after his death: “If you don’t agree with voluntary euthanasia then don’t use it, but don’t deny me the right to use it, if and when I want.”
As an atheist, I would just ask you to kindly get out of my bedroom please.
As a palliative care physician of many years, and now also occasionally involved in assisting patients access VAD, can I just say that there is a whole different perspective to that personal, albeit heartfelt, reflection by Odette Spruyt.
Palliative care and VAD are not mutually exclusive despite what many pall care clinicians assert. VAD is but one choice patients may opt for at or near the end of life.
My involvement with patients requesting access to VAD is as a pall care clinician who delves into the patient’s symptoms, quality of life and reasons for their request.
By my own reckoning, by attending to such “suffering” issues, I have been able to dissuade as many patients from proceeding down the VAD pathway as those I have assisted with VAD.
As for the doctor-patient relationship, and relationships within our palliative care team and unit, these have in my experience (and from reports of our team members/staff) been strengthened as we find it a very rewording to be able to assist these patients who, for whatever, reason, are at the limits of their suffering. It does not undermine our efforts as palliative care clinicians.
Of course everyone, including health professionals, have the right to set their own ethical/moral limits on their involvement with assisted dying, but as others have noted, it is “voluntary” after all appropriate assessments as required by law.
RESPONSE TO ASSOCIATE PROFESSOR ODETTE SPRUIJTS (Insight – 3 August 2020) from Bev Young, retired Palliative Care Nurse Specialist:
“I read with great interest the article by Associate Professor Odette Spruijts dated the 3/8/2020 regarding ‘Assisted dying: push for removal of safeguards alarming.’
I take umbrage at the very first paragraph. The last sentence suggests that Voluntary Assisted Dying (VAD) has been suggested as the only alternative for those in a terminal state. This is just not the case. It is a course of action chosen by those with unbearable, uncontrolled suffering. The article indicated the number successfully seeking VAD in Victoria since the legislation was passed totalled 52, while many applications appear to have failed due to the system as it stands.
The Australian Bureau of Statistics estimated that there were almost 50,000 deaths attributed to Cancer alone, Australia wide during 2019. There are other illnesses which also result in horrendous side effects prior to death, such as Motor Neurone Disease and end stage Multiple Sclerosis to name two.
Even without the specific number of deaths as they relate to Victoria, I would suggest the utilization of VAD by only 52 people indicates how few will seek such measures, only those desperate to end their suffering.
It’s a lot easier decision making about a plan of care in a team meeting reading second hand information, than standing at the bedside of a patient with pancreatic cancer watching them vomit faecal fluid, and having to tell the horrified family in attendance, there is nothing that can be done to alleviate this. I once nursed such a patient who vomited almost hourly for nearly five days before they died. Where is the ‘dignity in dying’ like this I ask you?
I also challenge the Professors statement that in consideration of allowing death with dignity, she has –
“…witnessed the devastating impact of this law on the cohesion of teams, on the relationship within clinical units, and a cause of deep moral distress among many of my medical colleagues”
May I remind you, It is NOT about any one of those people. This is all about the PATIENTS needs being met is it not? The person lying in the bed is the one with the potential to suffer horrendous side effects. I say ‘potential’ because many, dare I say most, with excellent Palliative Care will not have a need to request VAD, having their debilitating side effects well managed – BUT NOT ALL!
Again, the aim is for those suffering unbearably, to have the right to choose (or not), VAD. Just as their physician has the right to conscientiously object to assist in that decision, allowing them to find a doctor who will respect their decision making. VAD is NOT about promoting death, but it is about relieving unnecessary suffering. I acknowledge that Professor Spruijt may never seek or agree to VAD which I respect is her right.
Having acknowledged that “Palliative care is not a panacea for all suffering” the Professor then makes the most contentious statement of all, in that the “majority of people who access VAD worldwide do so not for the relief of physical suffering but because of loss of actively engaging in meaningful life activities” or through “loneliness”. I vehemently deny this position. Again, I challenge anyone to watch the Documentary ‘The Broken Hearted’ produced by Go Gently Australia. That is the real world, about real people, not some questionable statistics on a piece of paper.
I am not cynical about the need for Doctors to be involved in the process of VAD. By all means, let them ensure the patient understands informed consent, that they are making the decision based on their physical symptoms, not out of fear or other misapprehensions. By all means, ensure that everything that could be done to alleviate their suffering has been instigated with the very best Palliative Care possible.
I pray to God I, or any loved one of mine, should never be unfortunate to contract a terminal illness with horrendous suffering, but should that be the case, I would without hesitation seek VAD.
But more than this, should it be so, I pray God doesn’t give me a Doctor who lacks compassion and understanding of my choices, in lieu of treading a safe path that protects their position.
With regards
Bev Young
Retired Level 111 Nursing Supervisor
Palliative Care”
Fantastic article that reflects the unspoken views of MANY
Victorian doctors who have been affected by the legalisation of VAD in our state .
It would indeed be a sad day when patients
who express a desire for death are referred to a VAD navigator rather than having the reasons for their request fully explored . In almost all cases exploration of their distress and attention to the issues raised can see the patients concerns be fully addressed without the need for VAD .
VAD offers a false message of hopelessness and despair, the certainty of which it presumes is certain but can never be known .
Those who perpetually speak of autonomy as the alpha and omega can only really ever be satisfied once any person at any age for any condition can access this death on demand – all provided by the state and its drs .
When doctors intentionally end some patients lives on request there can be no logical argument to prevent extension of this killing to other patient groups .
The abject selfishness of those who bleat about their own right to VAD and naively and falsely claim that safeguards will always protect the vulnerable astounds and horrifies me.They are kidding themselves and everyone knows it .
Hi Odette,
I read this piece twice, slept on it and now feel that I can respond.
I sense the pain in your voice and the anguish too. This is deeply personal and you aren’t dissuading against VAD but rather reflecting on what is happening and how it impacts our practice of Palliative Care. I agree too that Palliative Care must be taught to all health care professionals because the message must go out – Palliative Care does not mean “do nothing”. There is much we can do.
Yes, autonomy. Yes, choice. Yes, for you who desire that control, VAD. We are not here to oppose.
But VAD is not Palliative Care.
Just as you have the space to shout for autonomy, let us have quiet moments to reflect on our practice.
Odette, thank you for your thoughtful piece. It seems to me that the Victorian legislation was passed with a view to political considerations, and without taking into account the effect that such a law would have on future medical practice. As information emerges from The Netherlands, Belgium, and Canada we can see this more clearly. The criteria are rubbery, not by the passage of incremental legislation always, but by gradual change to what is considered ‘normal practice’. So we find euthanasia for psychiatric illness, loneliness, grief etc- the ‘slippery slope’ that is said to not exist. Palliative care specialists are berated, funding threatened, and medical students are told that if they will not participate they need not bother to become doctors. A desire for autonomy does not entitle advocates to harm others in the community. The crossing of this ethical line is resulting in a slow deterioration of medical practice, which was absolutely predictable, and will be to the detriment of our patients, unless it is changed, and the call you make for better education in Palliative Care is heeded. That is what should have been done in the first place.
Another elephant in the room (getting crowded) is the general fear and ignorance of the Advance Care Directive (ACD), for those who would prefer to not be pounced upon by a “well-meaning hero”. The practice of admitting to ICU’s of people for whom their well practised acute-problem therapies are inappropriate has become rife, either because families insist or well-meaning but ill-focussed doctors chasing unachievable outcomes.
Having an ACD in place suggests that issues have been considered and discussed and a rational decision taken during rational circumstances. Many patients, doctors and lawyers seem to be ignorant of this worthwhile document which should have achieved prominence long before “termination orders” were legislated. How about requiring an ACD for all nursing home admissions? It doesn’t happen in NSW, even some institutions won’t “recognise” the authority of an ACD! Talk about losing perspective and respect for an individual’s wishes.
Associate Professor Odette Spruijt declares that palliative care doctors are taught to avoid imposing their values on their patients and then her article focuses on her values and her perception of societal values and slippery slope arguments. It is time for her to apply her training and do not impose her values on her patients.
“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.” This is what Odette Spruijt has said, and that is all she needed to say. The rest is heavy and ponderous, but ultimately not persuasive.
Of course, there will be the need for change with time, but change need not be alarming, nor should it reduce safe-guards, nor “put (any) lives in danger”. A clear case for change is outlined by Susan Bailey. If a dying person cannot opt for intravenous administration, or if such a reasonable option is delayed for purely bureaucratic reasons, then something is amiss.
My heart bleeds – poor, poor doctors suffering from the “anathema to the very core of our sense of what it is to be a doctor”. My advice would be to stop focusing on yourselves and start providing patient-centred care with compassion, empathy and kindness for people with intolerable and unrelievable end of life suffering (that is not just physical) and with respect for the voluntary, informed requests of your patients.
I AM NOT ANONYMOUS.
I have no intention of dying “naturally”.
I will most likely have to kill myself prematurely and deny my family the joy of my company in my last months or years.
I cannot trust that some do-gooder won’t try to keep me alive when I am way past my used-by date. I cannot afford to wait until I am gaga … so I will have to act while I am still sane and active.
GEORGE QUITTNER …. feeling rather happy and chipper today.
If a doctor doesn’t wish to be involved with VAD no-one is forcing them to, however forcing a person to stay alive when they are suffering at the end of their life is torture. The best palliative care is often not enough and patients die due to terminal sedation which isn’t something that they chose, rather it is a consequence of trying to reduce their suffering
get born, grow up, take risks, have fun, search for scientific understanding, help others and then go for a walk in the top paddock before its too late to know how to do it.
Sensitive counselling is what ones hope for prior and during the the VAD process and the final act is totally under the patient’s control.
If we take the decision totally into our medical hands ,we do not follow the patients wishes through the very last phase of his/her life.
VAD certainly opened a path that I would consider if I was in the end of life circumstances and would be resentful of a doctor told me that their personal beliefs prevented me from accessing it.
I cannot comment on the impact on the palliative care profession but as the situation is relatively novel, it is surely an invitation to explore it in all its dimensions and perhaps develop some new perspectives.The elder doctors definitely transmitting their enormous range of experience and compassion by example but not standing in the wind of change.
The article provides important insight into where medicine is going in this area inspite of denials that there is any problem. The comment relating to an “inexperienced doctor” indicates how killing (some don’t like this word”) patients has now entered routine therapeutic guidelines.
The ethical issue for doctors is expanded in detail in the article “The other side of euthanasia:a practice perspective from Australia” published in the peer reviewed journal:
Research in Ethical Issues in Organizations 2019;4: 55-66.
Randal, do you not appreciate the cognitive dissonance in your closing comments where you say..?
“I am happy to accelerate death by relieving pain and distress, but not deliberately to kill. “Thou shouldst not kill, neither strive too officiously to keep alive “
A conscientious objector to voluntary assisted dying is just that .. a conscientious objector ie it is their choice for themselves.
Certainly there is every reason to maintain stringent safeguards to protect the truly vulnerable from external pressures and/or malign interests, but when the sentient individual makes that decision for themselves (or the established End Of Life Plan is triggered), it is not for anybody, however conscientiously they object, to stand in the way of that individuals fundamental human right or wishes … the right to choose when they die.
It is the last great caring act any “health caring” professional can administer, to ensure that chosen and planned death is peaceful and pain free. That is the bottom line here.
I don’t want anybody standing in my way.
The author has completely overlooked the issue that as a doctor she must respect patient autonomy and be guided by what they do or do not want. VAD is VOLUNTARY!!!!
My mother died 2 weeks ago in Victoria from gastric cancer. She sought VAD, and was given the lethal oral drugs and information regarding the process. This was probably 3 months before her death. At that time she still had a reasonable (self-assessed) quality of life – was able to eat small amounts, had meaningful visits and telephone calls from family and friends. She was appalled by the process involved in self-administering the oral drugs, especially as her swallowing was somewhat impaired at this time. She felt it was too onerous, but was buoyed by the belief that she could instead chose an IV administration should she not be able to swallow. When the time came – about 1 week before her death- that she desired to enact her right to VAD, she was unable to swallow. However, she had not understood that the right to IV administration required a further process that took days at best. This was not communicated to her or her family by the VAD GP. By this time she was well managed via a palliative care team and family in her own home, and she died before the IV drugs could be couriered to her home (in regional Victoria). She suffered for a short time, not so much from pain, but from being forced to live in a state of being where, to her, there was no quality of life.
Certainly a very inward looking, self absorbed view with no real concern for the patient OR their wishes.
It’s frightening for ME to know that when I am suffering and want to go, some self righteous so and so may deny me my dearest wish, to die quickly with some dignity left. ?
alarming ALARMING
I WILL TELL YOU WHAT IS ALARMING.
Prolonged miserable existence when my time is up. THAT is alarming!!
This is but one perspective. I would much rather a multitude of perspectives from those who are actively dying. There is no obligation for any medical practitioner to assist if they object, however, actively listening to their patient is imperative, and it is unethical not to allow autonomy in decision making.
It is not about the Doctor but the Patient.
The slippery slope argument is tiresome and unsupported in research and literature. It serves those who object to assisting to completely misrepresent the meaning of the word voluntary.
Thank you Odette for these timely words of wisdom and concern. One of the many important points you raise is the need for doctors to listen to what their patients are really saying while at the same time listening to what is going on within them. This was most aptly expressed by Ken Wilber when he said, “When caring for someone who is dying, the crucial ingredient is not the doctors bag with all its tricks, but the carrier of the bag.”
I have said many times,and will continue to say, that legal euthanasia ( now repackaged as VAD ) is at the risk of abuse and also is a slippery slope to the normalisation of medical killing. It didn’t take long for the carefully included safeguards to be questioned, to make the process “easier” both for doctors and patients. If those suffering can get access to medical VAD , then they should be able to get access to proper palliative care. With modern drugs and therapies there should be no need for patients to suffer unduly in the dying process, which is a rite of passage for them and their families.. We should be careful to treat the patient and not the relatives, who may perceive suffering in their loved one when in fact they have little or no awareness. I am happy to accelerate death by relieving pain and distress, but not deliberately to kill. “Thou shouldst not kill, neither strive too officiously to keep alive “
Thank you for that interesting perspective,
perhaps a little more reflection is needed on rights of the patient and patient autonomy rather than the constant “I” and the royal “we” used throughout this article by the author.
Autonomy is a central value in Western medicine and medical ethics- autonomy of the patient, not the Doctor ….
who has every right to refer anyone on should they not wish to participate in Voluntary Assisted Dying requests.
Dear Odette, thank you for your rich and informed piece, written from the ‘ coalface’.
I wonder in the time of Covid, when we are jettisoned into thinking much more about the ‘ we’ rather than the ‘ I’, will some have misgivings about the inclusion of assisted-suicide within the remit of medicine.
Catherine Stuart