Palliative care experts discuss implications of voluntary assisted dying

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Palliative care experts discuss implications of voluntary assisted dying

The practical implications that voluntary assisted dying would have for palliative care were discussed by an expert panel at the National Palliative Care Conference in Adelaide.

Facilitator Dr Karin Myhill emphasised that the panel discussion should not be being interpreted as an endorsement of voluntary assisted dying. Rather, its purpose was to consider implications if and when the legislation is passed in an Australian state or territory.

Dr Myhill, a senior consultant psychiatrist at Southern Adelaide Palliative Services, acknowledged that last year’s attempt to pass legislation in SA had been a reality check; had it not been defeated by the Speaker’s conscience vote she would have been under-prepared.

Dr Peter Allcroft, senior consultant from the department of palliative care at Daw Park Repatriation General Hospital in Adelaide said he wrestled with the complexities and nuances of voluntary assisted dying and detail on how it would be implemented. He said it seemed inevitable that palliative care services would need to be involved, and asked if they weren’t, what services would.

“I note that we are far from perfect, but if it’s not us, then who? And who will be protecting patients seeking voluntary assisted dying from receiving assistance from physicians with standards not as rigorous as ours [in palliative care]?”

He questioned the logistics of where the dying would occur, posing the incongruous situation where one hospital ward managing pain would sit next to another for voluntary assisted dying.

“Must it be a stand-alone setting? Do we take this and do it quietly in the dark somewhere? Can it occur in a four-bed [hospital] bay, or only in patient’s home?”

Dr Allcroft questioned how doctors would be adequately trained; “It may scare you to know the first doctor to utilise the voluntary assisted dying legislation in Canada is a fertility specialist”.

He said that despite years of voluntary assisted dying in many years in parts of Canada and the US, these locations still had no competency standards in place.

Issues of fair and equitable access also troubled Dr Allcroft, who noted that most health services were already stretched. He cited examples of people in terms of rural and remote areas, and patients who were so unwell they could not able to administer drugs themselves. And he wondered how the process would be monitored and tracked.

“Does the Federal Government need a specific Medicare item number to keep track of this?”

Acknowledging he had more questions than answers, he asked, “If it is legalised, and it will be in this country at some point in the near future, how do we work this into palliative are management?”

Adjunct Professor Michael Moore AM agreed legislation would pass “in some jurisdiction in Australia in the not too distant future”.

Professor Moore, who is CEO of the Public Health Association of Australia, raised the issue of funding, suggesting there would inevitably be cost shifting between federal, and state and territory, governments.

He said planning for education systems, guidelines and support for physicians would start after legislation was passed and he predicted it would be costly

“What we are talking about is something that is really difficult because it is new,” he said.

He quoted philosopher Niccolo Machiavelli: “There is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction in a new order of things”.

He asked what could be more challenging, than a new order of things in which there was a place for ending a person’s life.

Professor Jennifer Philip, chair of palliative medicine at the Victorian Comprehensive Cancer Centre, said it was important for palliative care to position itself as being “quite separate” to voluntary assisted dying, despite having expertise at navigating end-of-life conversations.

She said palliative care needed to be prepared to care for patients who may seek a hastened death, and communicate with them, being mindful that some people are frightened that palliative care may hasten their death.

Professor Philip said physicians needed to frame requests for voluntary assisted dying as an opportunity for deep, reflective exploration, in order to get to the bottom of what is motivating the patient. She said it was important to screen for depression, determine why – in the progression of a long illness – they wre asking now, what they are most fearing and whether their situation had potential for improvement.

She said overseas research showed that 70% of people wanting to access an early death changed their mind after receiving palliative care.

“Finally, and I think and this in not to be said up-front, but at some time you need a discussion with person suffering about your limits and what you will and won’t do, and the issue of contentious objection.”

Helen Walker, clinical services coordinator at Daw House Hospice, SA Health, said Professor Philip had described skill sets that aren’t widely held within the health system.

She said a highly trained workforce and strong ethical guidance system will be required to “steward the process” and she questioned how thoroughly these issues had been thought through.

She had noted a reluctance among experienced palliative care nurses to engage with conversations about voluntary assisted dying, and she didn’t blame them, but “we can’t ignore it and have our head in the sand”.

“We need to think this through, prepare ourselves and be knowledgeable and understand the ethical framework we are working in, and that every case we will come across will be different with a different nuance.

“If we don’t understand what is behind [each request] I think we are in danger of making mistakes,” Ms Walker said

“These are very advanced skills. If we take ourselves out of the picture I worry there is a void and I’m worried there is avoid even in our own picture if we don’t do some more work.”

She also raised the issue of the emotional response clinical staff, ancillary staff and volunteers  naturally experience after the death of someone in their care, and the debriefing required.

“This impacts everybody. This is a community issue, a human issue.”

Facilitator, Dr Myhill, agreed, noting that there was a large gap between idealistic agreement with voluntary assisted dying and actively being involved in it.

Dr Lawrie Palmer, medical head of unit, Northern Adelaide Palliative Service at Modbury Hospital,  said he will continue to do what he has always done when a patient requests euthanasia or voluntary assisted dying; “sensitively explore the issue with them and see what happens”.

He said he wanted protection for this stance embedded in legislation, for himself and other members of his team. And he said it would have a huge impact on him, if he had to refer the patient to someone else who would act on the request, and he worried particularly about the impact on junior doctors.

“I think introduction of voluntary assisted dying has potential to fundamentally change the doctor- patient relationship and the patient’s perception of health care,” Dr Palmer said.

“For patients who are frail or vulnerable it is a great concern that their death may be hastened. I think it would become very confusing for patients; it is already confusing and confronting when a patient goes form a surgical ward to hospice ward.”

Dr Palmer said palliative care doctors had at times been called ‘death doctors’, so if legislation passed this would make introducing some patients to palliative care even more difficult.

“I think it would blur even further the misunderstanding that exists about palliative care.”

He spoke of a patient with metastatic cancer who wanted euthanasia, but their view was “much less strident” once their pain and symptoms were better controlled.

Specialist palliative care physician Dr Roger Hunt is a member of the Victorian Ministerial Advisory Committee on Voluntary Assisted Dying.

He said the parliamentary committee travelled to Oregon, US, to better understand legislation in place for 20 years which had made self-administration of lethal medication possible for people with a terminal illness.

“After 20 years, the number of people accessing that medication is less than 1%; it is a fraction of 1%,” Dr Hunt said.

“We are not talking about big numbers here. We know from the public surveys up of 80% of Australians think there should be law reform in this area and it should be a human right.

“Can they have control over the ends of their lives? Are we really patient centred? Do we value patient autonomy? Certainly the public do.”

Dr Hunt said the Victorian parliamentary committee arrived at 49 recommendations, 48 of which were supportive of palliative care. One recommendation supported the introduction of legislation for voluntary assisted dying.

He said the process would require two independent medial assessments by doctors who are Fellows of a college or vocationally registered and have five years’ experience. One of the two doctors needs to have expertise in the patient’s disease or condition. Patients with suspected psychiatric illness, depression, or brain injury must be assessed by a psychiatrist or neuropsychologist.

Both doctors will need to a training course, the nature of which hasn’t been established.

Doctors would be able to opt out as a matter of conscience and they would not be required to refer patients seeking voluntary assisted dying.

“Eligible patients must have an illness that is advanced and progressive, which will cause death in weeks or months, but not longer than a year,” said Dr Hunt.

“The person must be suffering in a way that cannot be relived in a way they find tolerable.”

Patients will need to make two verbal requests, and a written request, and be informed about palliative care options and the expected results of palliative care treatment.

“Once this legislation goes to parliament, maybe at the end of this month, if it does pass the recommendation is an 18-month implementation process where all questions asked by the panel earlier will be addressed.”

Later, while discussing a scenario put by the facilitator, Dr Hunt said many young doctors felt uncomfortable about palliative sedation. While its intention was to relieve suffering, they had to grapple with knowing that putting patients into a coma would hasten their death.

“There are none of the legislative safeguards around any of that. We are doing that now. I like to think we are doing it responsibly,” said Dr Hunt.

“I think we can handle voluntary assisted dying, as proposed in Victoria, in a responsible way as well.”

He said at the end of a very stringent assessment process, the patient could be given a prescription that they could choose to have filled.

“They don’t have to take it. In Oregon, one in three people choose not to take it, but at least they have the comfort of knowing that if things get really tough they have the option.

“That sense of control at the end of life can be valuable palliation.”

He said a study from Europe suggested bereavement outcomes were not worse when patients took the lethal medication, but rather that bereavement was less traumatic than when patients with a terminal illness died naturally.

Georgie Haysom, head of advocacy for Avant Mutual Group, is a lawyer who has represented doctors for about 20 years. She agree with other panel members that voluntary assisted dying legislation was inevitable.

She said doctors have expressed concern about being subject to criminal or civil liability or even disciplinary action.

She said many medical practitioners have gaps in their knowledge about end of life legislation now, “which can be quite technical depending on the jurisdiction in which you practice”. In terms of understanding potential new laws, doctors were starting from a “fairly low base”.

She said the legislation needed to offer protection for doctors who participate and those who chose not to, and that ethical guidelines needed to stipulate that contentious objection should not impede a patient’s access to care.

She said it was time for doctors to consider how far they would be prepared to go, in terms of providing education and prescribing medication.

Where do they draw the line and how will they respond, should they be asked to overstep it.

Critically, doctors needed to be clear on how they would negotiate disagreements on the issue, both within medical teams and within families.

“Bad communication is one of the main drivers of medico-legal claims,” she said.

The panel discussion lasted more than one and a half hours and was well attended.