Improving safeguards against misuse of voluntary assisted dying substances by non-eligible patients

This article was originally published in the Australian Health Law Bulletin edition 32.10 in November 2024.

Inquest into the death of ABC (a pseudonym). Coroners Court of Queensland CCMS 2023/2350

Synopsis

In the inquest into the death of ABC,[1] Coroner D J O’Connell (the Coroner) investigated whether personnel who oversaw the voluntary assisted dying (the VAD) program in Queensland appropriately sought the return of unused self-administration substances and whether the process under the Voluntary Assisted Dying Act 2021 (Qld) (the Act) could be made safer. Under the Act, a person can self-administer a VAD substance in a private location, but they must nominate a person, named the Contact Person, who will be legally required to return any unused or leftover portion within 14 days.[2]

The key issue for the Coroner was whether the currently mandated VAD procedures relating to the supply of VAD substances for self-administration and the recovery and disposal of unused substances was adequate in minimising the risk of the unauthorised use of the substances. Alternatively, if the processes could be made safer and by what means, whilst still maintaining appropriate recognition of the privacy, compassion and autonomy interests of patients and their families.

Facts

ABC and their spouse were elderly. The spouse suffered from a long-standing period of ill health and was ultimately given the prognosis that their condition was terminal. As such, the decision and appropriate steps were taken under the Act to end the spouse’s life.[3] ABC was nominated as the spouse’s Contact Person.[4]

The VAD substance was prepared in Brisbane. There is only one pharmacy in Queensland that is approved to prepare the medication. On 24 April 2023, the substance was personally delivered to the spouse by a member of the Queensland Voluntary Assisted Dying Support Service (QVAD-SPS) together with an instruction booklet. ABC advocated that they would have preferred a nurse to be present to prepare and administer the oral substance. The Coroner commented that, “they, as ordinary citizens, held concerns as to correctly mixing and administering the substance, no doubt because an error or miscalculation will likely prove catastrophic”.[5] As the spouse elected to self-administer the oral substance, QVAD-SPS were not required to maintain oversight.

ABC and their spouse subsequently suffered from a COVID-19 infection and were hospitalised. ABC was discharged home, but their spouse remained in hospital.[6] The spouse eventually reached a point after their COVID-19 infection where they were unable to swallow. On 26 April 2023, they re-elected for a medical practitioner to administer the VAD substance in the hospital setting intravenously. At this time, ABC was instructed to return the unused substance by 10 May 2023.

On 8 May 2023, clinicians administered the substance to the spouse in hospital and they passed away. As the initial oral dose that was delivered to the spouse had not been returned, the spouse effectively had two doses of VAD substance made simultaneously available to them.[7]

On 8 and 12 May 2023, QVAD-SPS made two attempts at following up the return of the unused oral substance by way of telephone to ABC but with no contact and by way of text message with ABC’s adult child. On 16 May 2023, the adult child-initiated contact with QVAD-SPS and said they hoped to return the substance to the pharmacy the following day.[8]

After the death of the spouse, ABC became overcome with grief such that their adult child described them as ‘unable to function’.[9] The adult child had spent some months living with ABC and the spouse toward the approach of the end-of-life process. ABC was observed to be so overcome that the adult child made an appointment with ABC’s General Practitioner for a mental health examination.[10]

ABC’s medical history indicated that they previously suffered from periods of depression and had been prescribed medication for this.[11] QVAD-SPS did not consider nor enquire, which is not required by the Act, on the state of the mental health of the Contact Person. The only requirement is for a Contact Person to be over the age of 18 years and to provide a name/contact detail. [12]

On 16 May 2023, ABC was found unresponsive at their residence sitting in a lounge chair. An opened VAD self-administration oral substance medication kit was found nearby, its contents empty and appeared to have been recently consumed. On 22 December 2023, a non-publication order was made due to the sensitive nature of the subject matter.

List of issues discussed by the Coroner

The Coroner investigated the death pursuant to section 45(2) of the Coroners Act 2003, namely: to identify who, how, when, where and what, caused ABC’s death. Secondly, in respect of the death of ABC, then Coroner considered whether the prescribed timelines for the return of the unused self-administration VAD substances were observed. If not, to what extent did they contribute to the death, and if such timelines had been observed, whether the death of ABC would have been likely prevented. Finally, and most notably, the Coroner investigated the VAD procedures under the Act regarding the recovery and disposal of unused self-administration substances.[13]

Criticisms of the current VAD self-administration system

The Contact Person suitability checks

The evidence given in the inquest was that a Contact Person is not required to undergo background checks. Commonly, the Contact Person will be emotionally very close to the VAD patient (usually family).[14] It was the Coroner’s view that, with such a dangerous substance, it should remain under the direct control of an authorised health professional, (such as a hospital, palliative care doctor or nurse or general practitioner),  until the eligible VAD patient has made a decision as to where and when they wish to take the VAD substance.[15]

It was accepted that there was no breach of the protocol or legislative process by any of the QVAD-SPS personnel. The legal obligation was on ABC to return the oral substance. It was acknowledged that ABC was in a health-fatigued situation and was grieving. The Coroner was critical that the process did not require undertaking sufficient background or character checks (not even a driver’s licence is required) to become a Contact Person. The Coroner noted that the most obvious flaw in this process is that the Contact Person will often be a close relative with an emotional connection when the end-of-life process concludes. During the inquest, it was conceded that “a person is required to undergo greater identity checks to enter a nightclub in Brisbane, than to become a Contact Person.” [16]

The simultaneous doses

The Coroner observed and commented that “ the system, and its purportedly rigorous checks and balances” had several operational flaws”.[17] The Coroner was critical that there was no logical reason for a VAD patient to have issued to them two VAD substances at the same time.[18] Clearly if a new substance is required, the existing one should be exchanged. The Coroner acknowledged that for the Contact Person, it was a difficult time, and they experienced significant grief, but to impose a strict deadline or some other penalty does not appear to be a compassionate approach.[19]  The Coroner further identified that the central flaw in the current system was “why such a dangerous medication [was] removed from the direct and immediate control of a health practitioner until it is ready to be used?”[20] The discussion is that if the medication remains under the control of the health practitioner until such a time the eligible patient is ready, it removes the need to impose any deadline for the Contact Person and eliminates the possibility of a VAD patient ever having two substances available concurrently.

Critique of the self-administration process

The Coroner noted that the self-administration process is in stark contrast to the process for administration of VAD in a hospital setting. The drug is classified as a Schedule 8 drug (the highest classification possible), so the prescribing, dispensing and administration is tightly controlled. When the medication is to be used, the qualified medical staff keep it in their possession until it is administered. It is subject to regular audits and generally hospitals have a safety management plan.[21] This highlights an obvious flaw in the self-administration process. In particular, the self-administration substance is simply handed to an ordinary citizen with no medical training or professional oversight whatsoever.[22] In relation to the storage of the self-administration substance, the Coroner  further observed that the storage of such a dangerous medication is not monitored and could simply be “left on the kitchen table of a patient’s residence...”, there being no regulation or oversight as to “ where it is kept, how securely it is stored, where the keys to the lockbox are kept (if indeed the box remains locked).[23]  

Another consideration by the Coroner related to the quantity of the substance given to patients who wish to self-administer. The evidence provided at the Inquest was that it did not matter what the patient weighs, they are all given the same quantity of the substance, meaning the quantity could easily end the lives of two persons.[24] As such, it is not too far reaching to suggest a valid VAD patient could enter the program with a suicide pact with their spouse.[25] The Coroner identified a more sinister thought would be that a scheming child could utilise the VAD substance to end the life of their VAD parent and then poison their other parent to access an early inheritance or not have to care for an elderly parent.[26]

The Coroner relied on evidence from a senior administrator of the QVAD program that they had identified this as being a potential issue and had now, as a response to the death of ABC, included “real-time monitoring” of the substance in the community.[27] Investigations showed that this was simply an internally produced daily report that allowed QVAD to see how many VAD kits had been issued into the community.[28] The Coroner was critical of this process noting that this did not provide real time monitoring in the general sense.[29]

The Coroner was concerned that the daily report did not identify where the substance was, how it was being kept, or whether it had been consumer or not.[30] It was also noted the report is only updated after the death is reported to QVAD, which is after it has been recorded by Births, Deaths & Marriages which may have delays of weeks until a death certificate is formally issued.[31]

The legislation and other near misses

The Coroner noted that it took 107 days since the enactment of the VAD procedure in Queensland for significant flaws to be fatally exposed.[32] The VAD programme became available to eligible persons in Queensland on 1 January 2023, with the death of ABC occurring on 16 May 2023.[33] Evidence given during the Inquest by QVAD-SPS doctors showed that there had been a number of near misses, where various patients have required the immediate intervention and oversight of a health practitioner to ensure the patient’s death.[34] The Coroner concluded from this that “without further VAD intervention these people may well have been left very significantly health-compromised by….the failure of the current system” [35]The Coroner was critical that this evidence demonstrated that ABC’s death was not a once off anomaly nor that it is accurate to label the programme as working perfectly except for ABC’s death and that “[F]urther calamity and heartbreak await patients and families if nothing changes”.[36]

The Coroner was also concerned about the lack of oversight as to the location of the death and the desirability of having a health professional present. In relation to the question posed as to why a health professional should be present at the location when someone dies,  the Coroner stated that it is simply “because complete autonomy allowed to a lay person has too many risks and can bring about an uncertain or inappropriate outcome”.[37].

Other risks associated with a home setting of a lay person for the administration of a VAD substance were identified by the Coroner as follows:

  1. incorrectly mixing or incorrectly consuming the mixtures, or at the very minimum great stress in ensuring the steps are appropriately followed;
  2. being unsure as to when then patient has actually passed away, is it 10minutes or 1 hour, do the family continually check?;
  3. who to call to complete the Life Extinct certificate? Call the QAS. QPS? These marked emergency services vehicles will then be appearing in the street outside the house. A Contact Person’s very first task after their loved one’s death should not have to be a 000 call;”[38]

Theoretically, without further controls on the location of the place of death, the Coroner noted that the following situations could occur in a home setting of a lay person:

  1. A couple goes to their favourite public lookout over the ocean to take the medication at sunrise or sunset;
  2. An elderly couple go to their nearby local park where they had sat at a bench daily, which happens to be next to children’s playground equipment;
  3. A man who lives alone with no local family and very few friends attends his local Leagues Club or Public Bar at 3pm each day as this is his daily social outing and after a few drinks then quietly mixes and consumes his VAD kit in the bar.[39]

In outlining the scenarios above, the Coroner considered that the Act needed to strike a balance between patient autonomy and respecting their wishes with the control of the use of a substance in a self-administration setting and to prevent further near miss situations[40].

The Coroner was confident that health professionals have the appropriate level of experience to ensure the safe handling of the VAD substance and also have compassion and objectivity to meet any reasonable requirements of the VAD patient as to the time, date, and location of their choosing.[41] For this revised approach, patients would be told that the prescription will be requested, they will be notified once the prescription is filled, the pharmacy is awaiting their request for it to be delivered, but that 7 days’ notice for delivery is required.[42] The Coroner considered this was not unreasonable on the basis that the IV administration requires a similar delay, during which the prescription is filled and the IV delivered.[43]

For the Coroner, this revised approach achieves a balance between the compassion required for the VAD patient and their family, whilst ensuring the dangerous medication is kept under the direct control of an authorised health profession, eliminating the risk of misuse.[44] The current process is open to improper use because it was not drafted with practical application in mind.[45]

Recommendations

The Coroner stated that the Act as it currently stands was not considered with enough of the practicalities of the process, particularly for QVAD-SPS personnel.[46] In particular, legislators understood that the laws passed for VAD were novel in Queensland, but they did not have an appropriate balance between patient autonomy and recognition of the lethality of the medication.[47]  

No breach by QVAD-SPS

It was found that there was no breach of any law by QVAD-SPS personnel even though the return of the substance was overdue, pursuant to the Act. The Act as it currently stands does not provide a positive obligation to ensure it is returned, only an obligation on the Contact Person.[48]

International Perspective

The Coroner pointed to the VAD process in Canada, where a health practitioner is elected to assist or oversee the substance administration, particularly notable in patients that may have Parkinson’s Disease, where there may be difficulty with motor skills and consuming the substance.[49] It was emphasised that given the risks associated with the VAD substance, it should remain under the direct control of an authorised health professional until a decision is made, during which the health professional can then bring the substance to the location, provide it to the Contact Person or VAD patient, and oversee its correct consumption.[50]

Financial Analysis

The Coroner understood the financial aspects of his recommendations. His recommendation “effectively delays the already undertaken trip to deliver the VAD oral substance to the time when it is to be administered.”[51] It means that there are no additional travel costs, with the only additional expense being time spent at the location whilst the VAD substance is mixed and observations of it being self-administered, with confirmation of the deceased’s passing.[52] This of course, means that no follow up is required for return or disposal of any unused substance.[53] Overall, the Coroner formed the view that the change would result in no great additional expense.

Record of Cause of Death

The Coroner noted that in Queensland, the Act provides that a person who dies because of the administration of a VAD substance, does not die by suicide but rather dies due to their underlying illness or medical condition.[54] In the case of ABC, they were not a VAD patient pursuant to the Act and their cause of death was recorded as VAD substance toxicity (the particular medication substance is stated but the Coroner deliberately used terminology to avoid stating the name of the substance).[55]

The Coroner noted that to say a VAD patient died due to their underlying illness, is not the reality but perhaps was done for insurance purposes. It also appears to be an avenue for making the reality more palatable for families.[56]

Two options presented to the Government

During the initial development of the Act, including the provisions regarding self-administration, the Queensland Government was presented with two options.[57] The first was developed by VAD experts Professor Ben White and Professor Lindy Wilmot who provided a paper and a Model Bill.[58] Their approach was for self-administration to be under the supervision of a health practitioner.[59] The alternative that was proposed by the Queensland Law Reform Commission was for the substance to be given to the patient for use within 12 months. The Coroner noted that “most people can recognise that there is a required balance between medication safety and security on one hand, and patient autonomy and privacy on the other.”[60]   The Coroner was minded to be in favour of the Model Bill as achieving the appropriate balance between the two competing tensions. The Coroner made the comment that “perhaps those involved who put forward the current process simply did not have enough practical experience in seeing such circumstances as joint suicides between couples.” [61]

Good Governance

The Coroner described good government and governance to mean laws that “aim to consider, balance and implement rules to advance its citizens’ interests and their well-being, whilst adequately protecting them from harm or unforeseen consequences.”[62] The Coroner was critical of the implemented VAD oral self-administration laws as they currently stand, which overwhelmingly favour patient autonomy, which has led to the outcome for ABC and their family.[63] The reasons emphasise that if the procedures as outlined in the Model Bill were implemented, “then ABC would never had been in a position where they had the VAD oral medication solely at their disposal at a time when suffering from significant grief.”[64]

Key Takeaways

The Coroner has emphasised that parliament has passed oral substance administration laws that overwhelmingly favour patient autonomy. The inquest highlights the requirement to further improve processes, whereby eligible patients are still permitted to die with dignity, whilst also protecting against the misuse of lethal substances.

The death of ABC has exposed the flaws in the VAD process in Queensland. The Queensland government have responded with a statement that they are investigating the self-administration process under the current Act.[65] As a result of the Coroner’s recommendations, the government will need to consider whether a health professional is required to be present every time a VAD substance is administered.

[1] Inquest into the Death of ABC (a pseudonym) (Coroners Court of Queensland, Coroner D J O’Connell, 11 September 2024)

[2] Voluntary Assisted Dying Act 2021 (Qld) s 63(2). The penalty for not returning the VAD substance within 14 days of the decision being revoked is 100 penalty units ($16,130).

[3] Inquest into the Death of ABC (a pseudonym) (Coroners Court of Queensland, Coroner D J O’Connell, 11 September 2024), at  [9].

[4] Voluntary Assisted Dying Act 2021 (Qld) s 58.

[5] Inquest into the Death of ABC (a pseudonym) (Coroners Court of Queensland, Coroner D J O’Connell, 11 September 2024), at [10].

[6] Inquest into the Death of ABC , Above n 1 at [11].

[7] Inquest into the Death of ABC , Above n 1 at [12].

[8] Inquest into the Death of ABC, Above n 1 at [16q].

[9] Inquest into the Death of ABC , Above n 1 at [13].

[10]Inquest into the Death of ABC, Above n 1 at [13].

[11] Inquest into the Death of ABC ,Above n 1 at [14].

[12] Inquest into the Death of ABC, Above n 1 at [14].

[13] Inquest into the Death of ABC, Above n 1 at [5].

[14] Inquest into the Death of ABC ,Above n 1 at [38].

[15] Inquest into the Death of ABC, Above n 1 at [39].

[16] Inquest into the Death of ABC, Above n 1 at [14].

[17] Inquest into the Death of ABC Above n 1 at [17].

[18] Inquest into the Death of ABC , Above n 1 at [18].

[19] Inquest into the Death of ABC, Above n 1 at [18].

[20] Inquest into the Death of ABC, Above n 1 at [18].

[21] Inquest into the Death of ABC, Above n 1 at [29].

[22] Inquest into the Death of ABC, Above n 1 at [31].

[23] Inquest into the Death of ABC, Above n  1, at [31].

[24] Inquest into the Death of ABC, Above n 1 at [37].

[25] Inquest into the Death of ABC, Above n 1 at [36].

[26] Inquest into the Death of ABC, Above n 1 at [37].

[27] Inquest into the Death of ABC, Above n 1 at [32].

[28] Inquest into the Death of ABC, Above n 1 at [32].

[29] Inquest into the Death of ABC, Above n 1 at [32].

[30] Inquest into the Death of ABC, Above n 1 at [33].

[31] Inquest into the Death of ABC, Above n 1 at [33].

[32] Inquest into the Death of ABC, Above n 1 at [17].

[33] Inquest into the Death of ABC ,Above n 1 at [16].

[34] Inquest into the Death of ABC, ,Above n 1 at 34].

[35] Inquest into the Death of ABC, ,Above n 1 at 34].

[36] Inquest into the Death of ABC, Above n 1 at [35].

[37] Inquest into the Death of ABC, Above n 1 at [40].

[38] Inquest into the Death of ABC, Above n 1 at [41].

[39] Inquest into the Death of ABC, Above n 1 at [41].

[40] Inquest into the Death of ABC, Above n 1 at [34].

[41] Inquest into the Death of ABC, Above n 1 at [42].

[42] Inquest into the Death of ABC, Above n 1 at [43].

[43] Inquest into the Death of ABC, Above n 1 at [44].

[44] Inquest into the Death of ABC, Above n 1 at [45].

[45] Inquest into the Death of ABC, Above n 1 at [46].

[46] Inquest into the Death of ABC, Above n 1 at [46].

[47] Inquest into the Death of ABC, Above n 1 at [56].

[48] Inquest into the Death of ABC, Above n 1 at [59].

[49] Inquest into the Death of ABC, Above n 1 at [34].

[50] Inquest into the Death of ABC, Above n 1 at .[39].

[51] Inquest into the Death of ABC, Above n 1 at [49].

[52] Inquest into the Death of ABC, Above n 1 at [49].

[53] Inquest into the Death of ABC, Above n 1 at [49].

[54] Inquest into the Death of ABC, Above n 1 at [50].

[55] Inquest into the Death of ABC, Above n 1 at [50].

[56] Inquest into the Death of ABC, Above n 1 at [51].

[57] Inquest into the Death of ABC, Above n 1 at [53].

[58] Inquest into the Death of ABC, Above n 1 at [53].

[59] Inquest into the Death of ABC, Above n 1 at [53].

[60] Inquest into the Death of ABC, Above n 1 at [53].

[61] Inquest into the Death of ABC, Above n 1 at [54].

[62] Inquest into the Death of ABC, Above n 1 at [55].

[63] Inquest into the Death of ABC, Above n 1 at [56].

[64] Inquest into the Death of ABC, Above n 1 at [57].

[65] Julius Dennis, ‘Coroner criticises Queensland’s voluntary assisted dying laws after man took his life with partner’s medication’, The ABC News (Brisbane, 11 September 2024).

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