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GREATER understanding of the distinctions between palliative care and voluntary assisted dying (VAD) – among clinicians and the public — is urgently needed, say experts who have highlighted the complexities in navigating VAD in palliative care in the MJA.
VAD was legalised in Victoria in June, 2019, and in Western Australia, VAD legislation was passed in April 2020, with the laws to come into effect in mid-2021.]
The MJA authors used the case of a Victorian woman who was transferred between three venues of care before being able to self-administer the VAD substance to highlight the many complexities in navigating these laws and underline the lack of understanding about the distinction between palliative care and VAD.
“Population-based studies demonstrate a public misperception associating palliative care with euthanasia,” they wrote.
The authors also pointed to “growing concern about moral injury in health care”.
“Health care professionals are subject to moral injury as a result of ‘being unable to provide high-quality care and healing in the context of health care’,” they wrote.
Dr Will Cairns, a palliative care specialist and former president of the Australian and New Zealand Society of Palliative Medicine (ANZSPM), said it was important to recognise that moral distress affected patients as well as clinicians.
“Moral distress is not unique to health workers. Patients might feel moral distress about not being able to take control of their life. They may be distressed about having to live on when they had prepared for their dying and were at peace with it,” he said.
“And some health workers might feel moral distress by not being able to meet patients’ wishes. The source of moral distress depends on your belief system, which is the whole point of conscientious objection.”
Also, Dr Cairns said, all health practitioners – whatever their speciality – ran the risk of seeking to validate their practice.
“In other specialties, say oncology or cardiology, some physicians may feel driven to pursue their own course of management because that’s what they do,” he said. “And palliative care physicians are not immune to that. We may feel that we have failed if we have been unable to relieve all distress – physical and emotional – and that is never going to be possible. Accepting the limits of our powers is an important thing to do.”
Dr Cairns said the case study reported in the MJA highlighted the challenges in negotiating VAD laws for all health professionals.
“The challenge for health workers in all fields of medicine is to work out how they will respect the [VAD] law and the rights of people to access VAD, while being true to their own belief system,” he said, adding that COVID-19 had raised similar issues around access to resources and limits of care.
Co-author of the MJA article Associate Professor Leeroy William, Clinical Director of Supportive and palliative care at Eastern Health Melbourne and current President of ANZSPM, told InSight+ in an exclusive podcast that palliative care had a role in “exploring the reasons behind” patients wishing to hasten death.
“Is this a physical symptom issue or is this more a psychosocial or existential issue that is commonly seen in the literature around VAD and euthanasia?” he said.
Beyond that, he said, VAD was not part of the philosophy of palliative care, which was recently made clear in a statement by the World Medical Association.
He said, however, that there was a public misperception about the role of palliative care in end-of-life medicine.
“There is also a health professional misperception,” he said. “I can’t tell you the number of times that people have said to me, ‘Can you make this happen quicker?’, ‘Can you move this along?’,” he said.
Dr Cairns agreed this was an issue.
“There are many people, including health care workers, who think that you go to palliative care, and they just bump up the morphine and then you die,” he said. “And that’s not the way it is in specialist palliative care at all. We give people medications up to the level that is required for their comfort. And if someone is comfortable, we don’t just keep escalating the dose, we titrate carefully and thoughtfully.”
Dr Cairns outlined his views on VAD in a series of InSight+ articles (here, here, and here) in 2019, in which he addressed the distinction between the two areas of care.
“Whatever their views on VAD, a clinician can practise across the whole of the field of palliative care without having any conflicts over whether they might be providing VAD. And if they engage in VAD they are doing so outside the domain of palliative care.”
Associate Professor William said that, as a “small profession”, palliative care did not have the capacity to become the gatekeepers to VAD requests.
“A lot of our work is symptom management to prevent cancer patients having treatment breaks, but also in … complex end of life care, and because of the level of knowledge around end-of-life care … we also help other clinicians to develop those skills … and look at people holistically,” he said.
Go Gentle CEO Kiki Paul said since the 1-year anniversary of the Victorian VAD laws, the organisation had been interviewing families, medical professionals, and others involved in the VAD pathway to gain an understanding of how the law was working.
“Universally, the families are grateful that their loved ones had the option not to suffer further at the end of life. All of them spoke to the humane, yet rigorous, application of the law from everyone involved: doctors, nurses, pharmacists, medical institutions, and the VAD care navigators,” she said.
Ms Paul said the medical professionals interviewed reported that assisting a dying person with a VAD request was rewarding and represented “truly patient-centred care”, Ms Paul said.
“They have also found the process challenging, sometimes emotionally, but more usually because aspects of the law have created unexpected roadblocks for eligible terminally ill people to receive VAD.”
She said the barriers included: a shortage of VAD-trained specialists, making a second assessment difficult; federal law banning use of a carriage service to discuss VAD (particularly problematic during a pandemic); and the prohibition on doctors raising VAD with patients even though it is a legally available medical option.
Ms Paul pointed to a case in which a woman with neurodegenerative disease contacted more than “two dozen” neurologists before finding one who would provide a specialist assessment.
“On the other hand, we have learnt of one doctor who was a conscientious objector, but who re-examined his position after a patient request, and who now acts as a VAD assessor,” she said.
Ms Paul said Go Gentle research had shown that many patients requesting VAD were also receiving palliative care.
“Almost every family we spoke to were deeply grateful for the skills and compassion brought by palliative care, but they also had a clear understanding that their loved ones had reached a point where no amount of palliative care was going to decrease their suffering,” she said.
The MJA authors wrote: “Regardless of the end-of-life choice made, holistic care and good communication skills are not solely related to our specialty, these are skills that can be, and need to be, routine for all areas of medicine.”
Dr Cairns said it was up to all health professionals to change the conversation around end-of-life care and support people to accept the “normality of death”.
“The past 50 years have been about life prolongation and seldom do we candidly talk about the fact that, in the end, we all run out of life,” he said. “It’s important that we … give people back control over decision-making and shift the focus away from treating their disease to work out how we can improve the quality, as they define it, of their remaining life. Quantity without quality, for most people, is not satisfactory.”
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Dr Leeroy William, You represent an organisation (ANSZSPM) which has a position statement explicitly stating that VAD laws are a matter for “government to decide having regard to the will of the community”. Knowing that an overwhelming majority of the community supports VAD laws, is it appropriate for you to use your platform as President of ANZSPM to actively lobby Members of Parliament to vote against VAD laws?
You have a responsibility to separate your personal views as an opponent of VAD (public signatory to healthprofessionalssayno.org.au) from your duty as a representative of a professional organisation. ANZSPM is not a political lobby group.
You should also bear in mind that the peak body Palliative Care Australia now has a Neutral position on VAD after extensive research on the operation of VAD in other jurisdictions. Interestingly, they concluded that VAD has not diminished palliative care in those places and may have enhanced it.
We also need to improve disability and death literacy, including and especially among fellow health professionals, all disciplines included.
It will be important to avoid perpetuating any expectation that living with disability and dying is inherently distressing, but also to recognise necessity of appropriate availability and offer of ongoing holistic direct care, including palliative care, to prevent distress and care crises such as those happening in Aged Care during COVID19.
While VAD offers an additional treatment option for people who don’t want to live with the intensifying disability inherent to dying, we have not done enough for people and families who are still trying.
This has been made clear by COVID19, especially in Aged Care settings.
While treatment availability is part of good care, it is insufficient by itself, nor is it the same as direct care for those disabled by their dying (or any other reason).
It also remains surprisingly common to hear people say they don’t want to engage with palliative care services because they’re worried about death-hastening practices.
We note that the authors of the MJA article stated “no relevant disclosures”. In the interests of honest debate, we feel Dr Leeroy William should have disclosed that he is a member of Health Professionals Say No!, who endorse the World Medical Association’s view that:
‘physician assisted suicide and euthanasia are unethical, even if made legal’.
We are interested to know why Dr William decided not to disclose his blanket opposition to VAD, in an article purporting to explore its impact on palliative care. Surely this is relevant?
http://www.healthprofessionalssayno.info/
Two thought provoking articles, thank you. I am curious in your statement “we know VAD requests have increased during Covid”. Working in another organisation offering VAD, we are seeing the opposite..
Doctors have the right to conscientiously object. Moral distress of doctors pales into insignificance in comparison with what their patients are going through.
Dear Leeroy, I should clarify that the requests I have had to “..make this happen quicker” have not been from patients. Invariably, this has been from the patient’s family or friends.
I would expect that request from relatives and friends comes once the patient has become moribund and unable to request VAD.
There is a big difference between patients declining further medical treatment and asking doctors to provide them with the means to die. As doctors we should absolutely respect patients declining futile treatments or those which interfere with the quality of their remaining lives. It is then our duty to accede to their reasonable medical wishes including the provision of adequate symptom control. But once we participate in their suicide ( because that is what it is, however it is “packaged’ ) we have crossed a line , not only morally and ethically but one which will become more and more difficult to regulate and control as it becomes normalised amongst doctors and the community.
Clarification: The WMA states that it firmly opposes EPAS
Adopted by the 70th WMA General Assembly, Tbilisi, Georgia, October 2019
The WMA reiterates its strong commitment to the principles of medical ethics and that utmost respect has to be maintained for human life. Therefore, the WMA is firmly opposed to euthanasia and physician-assisted suicide.
For the purpose of this declaration, euthanasia is defined as a physician deliberately administering a lethal substance or carrying out an intervention to cause the death of a patient with decision-making capacity at the patient’s own voluntary request. Physician-assisted suicide refers to cases in which, at the voluntary request of a patient with decision-making capacity, a physician deliberately enables a patient to end his or her own life by prescribing or providing medical substances with the intent to bring about death.
No physician should be forced to participate in euthanasia or assisted suicide, nor should any physician be obliged to make referral decisions to this end.
Separately, the physician who respects the basic right of the patient to decline medical treatment does not act unethically in forgoing or withholding unwanted care, even if respecting such a wish results in the death of the patient.
The patient discussed in our article was transferred from home into our palliative care unit. From here she was transferred to another venue of care, where she died.
We would agree that moral distress is not unique to health workers. Many people, perhaps a large majority, are distressed by the lives they lead. They will also include people who are denied or precluded from voluntary assisted dying. People who are denied are left in the same position, but now angry that they didn’t meet the criteria. Who cares for them and their potentially increased risk of suicide? People with dementia do not qualify for VAD. Wherever the line is drawn someone’s suffering will not be met. People in aged care have suffered from the models of care that were permitted and underfunded. Whilst we pledge to fix the problems, VAD remains a legal option for some. Should this be permitted, when we can see the problems that may have led to their decision?
Moral injury is defined as the psychological distress which results from actions, or the lack of them, which violate your moral or ethical code (https://theconversation.com/moral-injury-violating-your-ethical-code-can-damage-mental-health-new-research-115654). How many people work with such psychological distress and does psychological safety exist for them to openly express their concerns? Schwartz Rounds have uncovered the emotional burden healthcare workers have faced for many years, and now COVID will add to this. Will the wider introduction of VAD into mainstream healthcare help the situation?
The point is not that we feel we have failed to relieve all suffering (an impossibility), but that such suffering is not solely the responsibility of the medical profession. We are very aware of our limitations but also aware of the benefits we can provide to people who receive palliative care. Due to the inequality of access to palliative care and the misperceptions about it, people may opt for VAD without being fully informed in their consent.
I should clarify that the requests I have had to “..make this happen quicker” have not been from patients. Invariably, this has been from the patient’s family or friends. Since VAD became legal, there has been a disruption to teams and processes as outlined in Odette Spruijt’s recent MJA article. We know that requests for VAD have increased during COVID, but also that COVID has highlighted the many deficiencies of our healthcare system.