Ruling on assisted dying drug Nembutal sets important precedent

Just before Christmas 2016, the Victorian Civil and Administrative Tribunal (VCAT) handed down a historic judgement in a case brought by the veteran advocate for assisted dying, Dr Rodney Syme.

This followed a decision, which was then referred to its immediate action committee by the Medical Board of Australia, to prevent Syme from “engaging in the provision of any form of medical care, or any professional conduct in his capacity as a medical practitioner that has the primary purpose of ending a person’s life”.

Syme appealed to VCAT where a panel comprising a judge and two medical practitioners overruled the Medical Board. The panel declared Syme could continue to supply the rapidly acting drug Nembutal (generic names pentobarbital or pentobarbitone) to patients he assessed would get significant psychological or existential relief from it.

Background to the case

Police interviewed Syme three times between 2005 and 2014 about his medical practice with a particular patient. Their interest was in whether he had committed the offences of inciting suicide, and aiding and abetting suicide.

As Syme was prepared to have his actions tested in a court, he admitted in 2014 he had provided Nembutal to patients who had approached him about assistance with their terminal illnesses.

Syme told me that, despite his admissions about having provided Nembutal to the patient, the police told him that a “lack of evidence” in this case would not result in his prosecution. He formed the view that there was a “benign conspiracy” by the police to not intervene in matters of doctor-patient end-of-life care unless a “serious complaint” had been made. An example might be if there were questions surrounding lack of consent or sentience in a patient supplied with the drug. He subsequently told VCAT he had provided Nembutal to more than 100 people.

In November 2015 Syme was a panellist, along with fellow advocate Andrew Denton and others, on ABC’s Q&A where he very publicly repeated an account of his actions. After the program, Bernard Erica, a man dying of tongue cancer, contacted him for advice.

Reported to the Medical Board

In January 2016, a doctor who had been treating Erica reported Syme’s contact with Erica to the Medical Board, which convened a hearing to consider whether it should take action. It ruled that Syme posed a serious risk to persons generally and to this patient in particular.

It upheld its decision on further investigation, causing Syme to appeal to VCAT in an attempt to overturn the Medical Board’s ruling.

The core of Syme’s appeal, which VCAT agreed with, was his:

… practice is a form of palliative care that is directed to the palliation of the psychological and emotional suffering experienced by some patients in the end stages of terminal disease. In particular, a sense of having control over the end of one’s life is one of the most powerful tools for the relief of that psychological and existential suffering. Dr Syme’s practice therefore is directed to providing support, including information and advice, which gives that sense of control to patients.

VCAT accepted that Syme’s primary purpose in providing Nembutal was therefore palliative care in the form of psychological relief to the dying patient who may or may not decide to eventually take the drug. The primary purpose was not to assist such patients to end their own lives, however likely this might be. However, significantly, VCAT concluded that the provision of Nembutal to provide psychological relief could have the “double effect” of ending a patient’s life.

Illegal to supply Nembutal in Australia

So how does an Australian doctor get Nembutal to give those patients who request psychological relief in the form of life-ending drugs to provide comfort about what may lie ahead? Here, a significant barrier emerges. Under cross-examination during the VCAT hearing:

Dr Syme agreed that certain barbiturates, including Nembutal, cannot be prescribed or legally obtained, by a medical practitioner and that it is probably illegal to give Nembutal to another person.

It is illegal to dispense Nembutal in Australia unless a doctor obtains permission via the Special Access Scheme administered by Australia’s drug regulator, the Therapeutic Goods Administration (TGA).

Once the TGA grants approval, the applicant (who must be a medical practitioner) then needs a permit to import it. No information has been released about whether this scheme has ever seen a request approved for Nembutal to be given to a dying patient.

However, here VCAT declared:

It should be emphasized that the Tribunal is not concerned in this application with the illegality or otherwise of Dr Syme’s conduct in obtaining the drug Nembutal or giving it to a patient. However, the Tribunal notes that Dr Syme’s conduct in this respect could hardly have been more public and there is no evidence before the Tribunal that he has ever been investigated, charged or prosecuted for any related breach of the law.

It would seem that, like the police who had interviewed him, VCAT had joined the benign conspiracy that recognises Nembutal can be accessed but that no draconian action will be taken against individuals who manage to get hold of it.

There are three main ways that Nembutal now finds its way into the hands of those planning to end their life in Australia, and to doctors willing to assist in providing it for them.

Ordering online

Suppliers from overseas are readily found on the internet, as are many useful comments from those who have attempted both successfully and unsuccessfully to import the drug by mail order.

Dangers include being ripped-off when the drugs are never sent; being sent tablets that are not pentobarbitone; and having the import intercepted by customs with the possibility of fines of up to A$825,000 and/or imprisonment.

Bringing through customs

Similar risks apply to carrying the drug in through customs at airports. Annual reports from the Department of Border Protection and Immigration do not provide data on seizures of pentobarbitone.

Perhaps the most relevant reported data on illegal imports of pharmaceutical drugs are from 2014-15 where 7,067 intercepts of steroids and hormones were made from mail and just 314 via customs hall arrivals (see p 68). To put this latter figure in perspective, there were 19.13 million air and sea passenger and crew who arrived in Australian in the 2015-16 financial year (see page 43).

Syme, who has spent some 25 years gathering intelligence about the issue, is aware of importers of commercial quantities who have been prosecuted, but is unaware of cases of prosecution for possession of small quantities enough for personal use. Here, discovered drugs are confiscated, with fines said to be typically A$500-700.

Diversion from veterinary sources

Vets use Nembutal daily for both anaesthesia and euthanasia of sick and dying domestic, agricultural and wild animals, such as those injured by vehicles. The TGA provides a detailed history of the scheduling of pentobarbitone in Australia, starting from 1955. Its most recent decision from November 2016 is described, when a proposal to tighten the scheduling was rejected. There was concern about suicides by veterinary staff with easy access to the drug.

Central to this decision was the concern that a higher level of restriction would greatly compromise animal welfare; red tape frustrated ease of access to the large quantities of the drug required particularly by those vets with rural practices. Importantly, the TGA noted that the variable dose requirements for euthanasia of different sized animals would always make skimming of pentobarbitone for human voluntary euthanasia purposes possible, regardless of any regulatory schedule.

Because each of these three access routes are illegal, no reliable data exist about how much Nembutal today sits inside Australian houses.

A long-time medical friend told me many years ago that she had a supply of the needed drug in her home safe that she planned to use if she decided her remaining life was not worth living should she develop a fatal disease. Several years after she developed a degenerative disease that would eventually lead to her death, she took her own life as planned. She was surrounded by her family during her final, fully conscious day. She took the drugs on going to bed and her partner woke to find her dead next to him at 4am. He told me “she went the way she always wanted to”.

Community support

With surveys like this one repeatedly showing that very large proportions of the community support assisted suicide for the terminally ill who wish to end their lives at a time of their choosing, it is likely that those accessing the drug will increase, particularly as the population ages.

Many people imagine such a scenario for themselves, so acquiring the drug is likely to become more common if customs continue to turn a blind eye. Legislative reform may soon put an end to people needing to break the law to make this happen.

VCAT’s decision is of immense importance. Its decisions can be cited in evidence and so may be used as legal precedents. VCAT accepted Syme’s defence (that his supply of Nembutal to dying patients was a legitimate and important part of palliative care). This means that other doctors around Australia may seek and perhaps succeed in using a similar argument should they be questioned by disciplinary authorities like the Medical Board or the police.

Those with terminal illnesses wanting the right to end their own life using Nembutal have a lot for which to thank Rodney Syme.

If this article has raised issues for you or if you’re concerned about someone you know, call Lifeline on 13 11 44 or beyondblue on 1300 22 4636.