Assisted dying: ‘the key word here is voluntary’


3 people holding hands

The Government won’t facilitate the approval of lethal medicines used in voluntary assisted dying, the Health Minister says

And a spokesperson for the Pharmacy Guild says that the key word regarding the legislation is “voluntary”.

As debate over Victoria’s Voluntary Assisted Dying Bill – which has passed the state’s lower house but is yet to clear its upper house – divides the country, Greg Hunt has told The Australian that the Government won’t support any request for legislation to approve the use of “specific euthanasia drugs”.

National political editor Simon Benson writes that “Health Minister Greg Hunt says the federal government would not legislate to ‘facilitate’ specific euthanasia drugs, which at present would be unlikely to gain approval from the federal regulatory body”.

“This is a matter for the states to determine under the Constitution,” Mr Hunt said.

“There appears to be considerable uncertainty as to what pathway it would follow if (this bill) is passed. But the commonwealth will not be seeking to change laws to either facilitate or thwart any matters before the TGA, which will follow the usual process.”

The Victorian Government may “go around” federal legislation by using a number of different, already-approved drugs in a “cocktail” in voluntary assisted dying, Victorian Health Minister Jill Hennessy reportedly hinted.

However Mr Benson writes that this could mean off-label prescribing of drugs in higher-than-approved doses, which would then interact with other drugs in the “cocktail”.

“This presented a ‘medico-legal’ issue for doctors, who would need to be confident they were acting within the law, in the best interests of patients, and within the scope of their medical practice,” he writes.

Pharmacists on assisted dying

Pharmacy Guild of Australia – Victorian branch president Anthony Tassone told the AJP today that the Guild is still formulating its position regarding voluntary assisted dying.

“There are a range of views expressed, from members who are supportive of the initiative, and some who are not supportive,” Mr Tassone says.

He said the Guild was “mindful” of the implications outlined in the Australian article, but “we don’t want to speculate as to what the medicine could be, or where it may have to be supplied from, in what form… there is a lot more discussion to take place, and we will be an interested stakeholder throughout the process.”

He said it was a key point that pharmacists and other health professionals be able to follow their own conscience regarding the legislation, if implemented.

“The key word here is ‘voluntary’,” Mr Tassone says.

“It’s voluntary from the patient’s perspective, the prescriber’s, and any practitioner, such as a pharmacist, that’s involved in the supply of the medicine.”

“I think what would be considered is that where a prescriber does prescribe the treatment for a patient, there be a means to be able to identify a pharmacy that’s nominated themselves as an access point for getting the treatment, so that patients can confidently go to a pharmacy, or other authorised outlet, to receive treatment and not experience any duress in having to be turned away or referred to other professionals without a confident understanding of whether they are in a position to provide the supply.

“The Guild believes that there should be support for those pharmacists wishing to participate, that there be appropriate training and achievable criteria to be able to provide the service if they wish to.

“However, pharmacists should not be compelled to provide the medication for voluntary assisted dying if they do not wish to.”

He pointed out that with 68 safeguards built into the legislation, the voluntary assisted dying framework would be the most conservative of its type in the world.

What do doctors say?

AMA president Dr Michael Gannon has continued his public opposition to voluntary assisted dying, tweeting a link to a Daily Telegraph article titled “Euthanasia is beginning of end”.

The AMA’s position on the legislation is to oppose interventions which have the termination of life as their primary intention.

Dr Gannon told Sky News’ Helen Dalley late last week that “we have great concerns about whether or not you can build the appropriate protections into this”.

“This is against centuries of medical ethics, it’s against the thing you get taught on day one of medical school, that you do not take a patient’s life,” he said. “Your job is to respect the sanctity of human life.”

Former Prime Minister Paul Keating has also waded into the debate, writing that “voluntary euthanasia” is a threshold moment that Australia should not cross.

However the Greens’ South Australian branch has followed the success of the Bill in Victoria’s lower house by pledging to bring the debate interstate to South Australia.

Greens lead state election candidate Tammy Franks MLC said that the Victorian Parliament had taken one step closer to compassion.

“Compassion is edging ever closer and politicians are starting to show the courage to allow the choice for those who want it,” Ms Franks says.

“The Greens believe that dying with dignity should be a basic human right. We also have the courage to take the debate into the Parliament for a decision.

“In SA, the Greens have introduced multiple voluntary euthanasia bills, which have been defeated by the narrowest of margins.

“We will put that to the test once again in the new parliament and we will persevere until we have compassion in SA, because the Greens vision is for a society that respects and values an individual’s right to choose.”

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21 Comments

  1. John Wilks
    24/10/2017

    Whilst the key word might be voluntary the darkness of the human heart has shown repeatedly in human history to be very capable of circumventing ‘best intentions’.

    Now is the time for the good men and women in the Guild to say no to this fraught legislation. The AMA opposes it, the oncologists oppose it …. why and who in the Guild would support it? Primum non nocere.

  2. pagophilus
    24/10/2017

    Look at what has happened in other countries that have legalized assisted dying. The “voluntary” nature slips away. The protections will become diluted over time.

    • Jarrod McMaugh
      24/10/2017

      G’Day Leo

      Do you want to provide some evidence to back up this claim?

      There is a lot of data available from all jurisdictions that have legalised euthenasia or assisted dying laws. If what you say is accurate, you’ll be able to provide us with the specifics.

      It’s also worth keeping in mind that the framework of this particular legislation is quite strict and clear. The number of health professionals involved who have to be satisfied that the individual is undertaking this process without undue influence is not insignificant. There would need to be a minimum of three health professionals who fail to pick up on the signs of coercion.

  3. John Wilks
    24/10/2017

    From The Australian of Oct 14.
    In The Netherlands last year, sanctioned killings and assisted suicide accounted for about 6000 deaths or one in 25 of deaths from all causes. The initial law in 1984 was introduced with the usual pledges that euthanasia without request would not occur, yet a series of official Dutch surveys disclose that physicians “have, with virtual impunity, failed to report thousands of cases and have given lethal injections to thousands of patients without request”.

    This analysis comes from John Keown, the Rose Kennedy professor at the Kennedy Institute of Ethics at Georgetown University, whose 54-page critique of the Victorian proposals will be published in the Journal of Law and Medicine. Keown says the feature of Victoria’s debate is the failure to make the ethical case for legislation given this issue is probably the most important in contemporary bioethics.

    • Jarrod McMaugh
      24/10/2017

      Thanks john, i will be very interested to read that. Is it an online journal?

      • John Wilks
        24/10/2017

        Goid morning Jarrod. I have the pdf. Can you supply your email? Mine is jfwilks57@hotmail.com
        Kind regards and prayers John Wilks

        • Jarrod McMaugh
          24/10/2017

          jarrodmcmaugh AT capitalchemsit.com.au

          Can I recommend that you edit yours above to remive the AT symbol or similar, since every bot on the net will sign you up to mailing lists….

          • John Wilks
            24/10/2017

            Tks. Ciao

  4. John Wilks
    24/10/2017

    Evidence of problems in Oregon. See https://www.ncbi.nlm.nih.gov/pubmed/18595218
    Format: AbstractSend to
    Mich Law Rev. 2008 Jun;106(8):1613-40.
    Physician-assisted suicide in Oregon: a medical perspective.

    Hendin H1, Foley K.
    Author information
    Abstract
    This Article examines the Oregon Death with Dignity Act from a medical perspective. Drawing on case studies and information provided by doctors, families, and other care givers, it finds that seemingly reasonable safeguards for the care and protection of terminally ill patients written into the Oregon law are being circumvented. The problem lies primarily with the Oregon Public Health Division (“OPHD”), which is charged with monitoring the law. OPHD does not collect the information it would need to effectively monitor the law and in its actions and publications acts as the defender of the law rather than as the protector of the welfare of terminally ill patients. We make explicit suggestions for what OPHD would need to do to change that.

  5. John Wilks
    24/10/2017

    To see a list if specialists etc who oppose the Vic bill go to http://www.healthprofessionalssayno.info

  6. John Wilks
    24/10/2017

    Current evidence from countries with legalized assisted dying denies the efficacy of the measure to achieve its outcome of reduced suffering at the end of life.

    For example:

    48.87% of patients in the Oregon model cited “being a burden on family, fiends/caregivers” as reasons to end their life.[1]

    No clinician can accurately estimate a survival of 12 months or less. A 2016 systematic review of physician
    prediction accuracy within the palliative population demonstrated an accuracy range of 23-78% with continuous estimates of underestimates by 86 days and/or overestimates of 93 days.[2]

    Only 26.3% of 1127 people who died under the Oregon assisted dying laws cited inadequate analgesia or concerns for inadequate analgesia as a reason for their assisted dying request.[3]

    Legalized assisted dying does not reduce the rates of suicide amongst the terminally ill. In Oregon, there
    has been a steady rise in the rate of ingestion of lethal substances since the introduction of Oregon’s Death with Dignity Act, with a 28.57% increase between 2014 and 2015.[4]

    In Belgium the review commission is notified of only 50% of assisted dying cases[5] which makes monitoring of assisted dying impossible.

    [1] Oregon Public Health Division, Oregon Death With Dignity Act: DataSummary 2016, Table 1. Characteristics and end‐of‐life care of 1,127 DWDA patients who have died from ingesting a lethal dose of medication as of January 23, 2016 [sic = 2017], by year, Oregon, 1998‐2016, p.10, http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year19.pdf

    [2] White N, Reid F, Harris A, Harries P, Stone P. A Systematic Review of Predictions of Survival in Palliative Care: How Accurate Are Clinicians and Who Are the Experts? Thompson Coon J, ed. PLoS ONE.
    2016;11(8):e0161407. doi:10.1371/journal.pone.0161407.

    [3] Oregon Public Health Division, Oregon Death With Dignity Act: Data Summary 2016, Table 1. Characteristics and end‐of‐life care of 1,127 DWDA patients who have died from ingesting a lethal dose of
    medication as of January 23, 2016 [sic = 2017], by year, Oregon, 1998‐2016, p.10, http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year19.pdf

    [4] Oregon Public Health Division, Oregon Death With Dignity Act: DataSummary 2016, Figure 1, p.4,

    http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year19.pdf

    [5] K Chambaere et al, “Recent Trends in Euthanasia
    and Other End-of-Life Practices in Belgium” (2015) 372(12) New Engl J Med 1179.

    • Jarrod McMaugh
      24/10/2017

      G’Day

      I’m going to respond to your points with my own points. These are not “right or wrong” but my viewpoint on the topics you raise. Not trying to have a flame war or troll etc.

      48.87% of patients in the Oregon model cited “being a burden on family, fiends/caregivers” as reasons to end their life.[1]

      This is a shame – but not shameful. It’s not our place to discount an individual’s perception of what is important to them. For some people, the idea of being a burden on their family is unbearable.
      That being said, it doesn’t fit the current criteria for accessing VAD. If the individual does meet the criteria, this may be what drives them to access it, but it doesn’t affect the validity of their right to access VAD.

      Importantly, family members and people who financially benefit from the death of an individual are prevented from being involved in the process of a person accessing a VAD service.

      No clinician can accurately estimate a survival of 12 months or less. A 2016 systematic review of physician prediction accuracy within the palliative population demonstrated an accuracy range of 23-78% with continuous estimates of underestimates by 86 days and/or overestimates of 93 days.[2]

      Perhaps, but the 12 month timeline is arbitrary. If someone is suffering in a manner that cannot be acceptably palliated, should the person be made to suffer longer because there is a chance they could live longer (and suffer longer) by 3 months more?

      Only 26.3% of 1127 people who died under the Oregon assisted dying laws cited inadequate analgesia or concerns for inadequate analgesia as a reason for their assisted dying request.[3]

      Is analgesia the only criteria on which we base the bearability of someone’s suffering?

      Legalized assisted dying does not reduce the rates of suicide amongst the terminally ill. In Oregon, there has been a steady rise in the rate of ingestion of lethal substances since the introduction of Oregon’s Death with Dignity Act, with a 28.57% increase between 2014 and 2015.[4]

      The purpose of providing someone with the capacity to access VAD isn’t about reducing suicide rates (keeping in mind that access VAD is not suicide). It is about giving people a choice, and doing so in a way that is legal. Importantly, this method prevents their will etc from being adversely affected.

      In Belgium the review commission is notified of only 50% of assisted dying cases[5] which makes monitoring of assisted dying impossible.

      Victoria’s legislation is far more vigorous, and there are severe penalties for health practitioners who do not report their participation in a VAD service to the VAD Board.

      • John Wilks
        24/10/2017

        Thanks indeed for this input. I am unable to reply as I am swamped with work.
        Kind regards
        John

  7. Jenny Madden
    24/10/2017

    How does voluntary stand in the case where a patient presents to the pharmacy where I am working with a script for the locked box. Can I simply refuse, pleading none in stock, or will I be obliged to facilitate the request, by directing the patient to a pharmacy which will provide the service?

    • Jarrod McMaugh
      24/10/2017

      The legislation enshrines the right of the pharmacist to remove themselves from participating via conscientious objection.

      The VAD legislation requires the establishment of a Board who will create the framework for how VAD will work, including providing the boxes, and a means for patients to be put in contact with pharmacists who are willing and trained to participate in the program.

  8. John Wilks
    24/10/2017

    Dutch Psychiatrist Boudewijn Chabot, the Grand Old Man of Dutch Euthanasia, has expressed horror over the erosion of euthanasia safeguards that has enabled euthanasia to be performed on demented and chronic psychiatric patients. Chabot concludes “I don’t see how we can get the genie back in the bottle”. (See: Boudewijn Chaboy, Worrying cultural change around the self-chosen death (Verontrustende cultuuromslag rond de zelfgekozen dood), NRC, https://www.nrc.nl/nieuws/2017/06/16/de-euthanasiegeest-is-uit-de-fles-11123806-a1563406, 16 June 2017

  9. John Wilks
    25/10/2017

    If a pharmacist voluntarily participates in the act of euthanasia, and the patient does not die, but is left alive with a grievous medical condition – perhaps significant brain damage – which requires permanent ongoing care, is the pharmacist liable at law if action is taken by the next of kin of the not-dead patient?

    Who will be held accountable for the ongoing costs of caring for the patient who, due to cognitive impairment, is now unable to give informed consent as required by the Act for another attempt of euthanasia?

    Given that these drugs may be being used off-label, does this type of use add another fraught layer of legal complexity to the emotional, psychological and medical sequelae of a “failed” act of euthanasia?

    Evidence to support the aforementioned concerns have been reported in well reputed medical journals. For example the New England Journal of Medicine (N Engl J Med 2000; 342:551-556) reported the following:

    “In 114 cases (total cases =649), the physician’s intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5).”

    We would all do well I think to ponder deeply the words of Dutch Psychiatrist Boudewijn Chabot, the Grand Old Man of Dutch Euthanasia, who has expressed horror over the erosion of euthanasia safeguards that has enabled euthanasia to be performed on demented and chronic psychiatric patients.

    Chabot states: “I don’t see how we can get the genie back in the bottle”. (Boudewijn Chaboy, Worrying cultural change around the self-chosen death (Verontrustende cultuuromslag rond de zelfgekozen dood), NRC, https://www.nrc.nl/nieuws/2017/06/16/de-euthanasiegeest-is-uit-de-fles-11123806-a1563406, 16 June 2017 )

    We all have, to varying degrees, that heart of darkness of which Joseph Conrad wrote so perceptively. No depth of legislation has yet been able to prevent the slow and subtle penetration of malevolence into the social tapestry once the first thread is permitted to be sown into the design.

    I therefore respectfully submit that as an ancient profession of healer and soothers of suffering, we should not cast that first corroding stich which will so dramatically damage the psyche of our noble profession.

    • Jarrod McMaugh
      25/10/2017

      G’Day John – Again my responses are my opinion, and are not intended to be a discussion of right or wrong, only of difference points of view

      If a pharmacist voluntarily participates in the act of euthanasia, and the patient does not die, but is left alive with a grievous medical condition – perhaps significant brain damage – which requires permanent ongoing care, is the pharmacist liable at law if action is taken by the next of kin of the not-dead patient?

      That’s a very good question, and one of the things that will need to be addressed within the 18-month period wherein regulations are developed. Let’s look at the current medicolegal risk situation now. If we provide a person with a medication for inflammation, and they develop acute kidney failure, is the pharmacist at fault? Partially, yes (even when prescribed) – this is the nature of being a health professional. We balance risk vs reward, and recommend a product (or not) based on our expertise and experience, with consideration of the patient’s situation. In the case of VAD, if we dispense an agent that is intended to end life, but it does not, then this is by definition a part of our liability. The important point would be to ensure that the agents selected do not cause other injuries. The most common issues with barbiturate intoxication are falls (which would not be expected in this situation) or pulmonary oedema due to fluid aspiration when the muscle tone in the pharynx is lost.

      Who will be held accountable for the ongoing costs of caring for the patient who, due to cognitive impairment, is now unable to give informed consent as required by the Act for another attempt of euthanasia?

      This is also a very good question, and will also need to be a consideration of the VAD Board in the 18-month period if the legislation passes. It’s possible that the Board will need to consider a no-fault insurance scheme similar to the NDIS.

      Given that these drugs may be being used off-label, does this type of use add another fraught layer of legal complexity to the emotional, psychological and medical sequelae of a “failed” act of euthanasia?

      Yes

      Evidence to support the aforementioned concerns have been reported in well reputed medical journals. For example the New England Journal of Medicine (N Engl J Med 2000; 342:551-556) reported the following:
      “In 114 cases (total cases =649), the physician’s intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5).”

      There main thing to consider in this quote is that a medical practitioner cannot intervene and provide a dose of a VAD medication in the instance where the patient has failed to self-administer. If a medical practitioner were to step in and administer a VAD substance in this situation, they are very clearly in breach of the legislation. If the situation arises that a person still has autonomy to make decision, but is too frail to take the medication (or is incapable of ingesting/absorbing it) then they must go through a new process to apply to doctor-administered VAD.

      We would all do well I think to ponder deeply the words of Dutch Psychiatrist Boudewijn Chabot, the Grand Old Man of Dutch Euthanasia, who has expressed horror over the erosion of euthanasia safeguards that has enabled euthanasia to be performed on demented and chronic psychiatric patients.

      The legislation does not allow this to occur here. It very specifically prevents a person with any type of cognitive or intellectual decline from accessing VAD. This INCLUDES situations where a person has successfully acquired a prescription, but has become incapable of self-determination prior to filling the prescription (ie the pharmacist will need to judge capacity)

      Chabot states: “I don’t see how we can get the genie back in the bottle”. (Boudewijn Chaboy, Worrying cultural change around the self-chosen death (Verontrustende cultuuromslag rond de zelfgekozen dood), NRC, https://www.nrc.nl/nieuws/2…, 16 June 2017 )

      I guess the question is, is this legislation the same as letting the genie out of the bottle, or is the legislation designed to prevent “indication creep”. I’ve read the legislation very very thoroughly since it was released, and I’ve read the final report from the advisory committee close to 100 times now. I’m confident that we are starting with a very sturdy bedrock on which to build the regulations.

      We all have, to varying degrees, that heart of darkness of which Joseph Conrad wrote so perceptively. No depth of legislation has yet been able to prevent the slow and subtle penetration of malevolence into the social tapestry once the first thread is permitted to be sown into the design.

      Sure, but as with all things, there is a counterpoint to this. As Martin Luther King Jr. stated, For evil to succeed, all it needs is for good men to do nothing. So long as there are people who are willing to question the motives of others, then we have the checks and balances needed to keep society working well.

      I therefore respectfully submit that as an ancient profession of healer and soothers of suffering, we should not cast that first corroding stich which will so dramatically damage the psyche of our noble profession.

      I’m not sure that this is the first corroding stitch. Personally, I see this move as one of compassion and autonomy. It allows a person to have some measure of control over their life that their body is robbing them of. For those of us who are not spiritual (or even those who are, I suspect), there is some comfort in knowing that unbearable suffering at the end of life is something we can choose to avoid.

  10. John Wilks
    26/10/2017

    Good afternoon Jarrod,
    I am under much time pressure atm (who isn’t I guess) hence my replies are at best shining examples of brevity but also a little underdone:

    1. “We balance risk vs reward, and recommend a product (or not) based on our expertise and experience, with consideration of the patient’s situation”
    The difference I see in the clinical decision making process relates to ‘intention’. In our daily worklife we all participate in making decisions which have as their primary purpose the improvement in a patient’s life. The intention is, in my view, therefore noble. Juxtaposed to this is the euthanasia issue, where decisions are made to end a patient’s life. Again, in my view, this is an ignoble practice, albeit motivated out of compassion. Hence the foundation of the latter decision making is corroding to our profession.

    2. “This INCLUDES situations where a person has successfully acquired a prescription, but has become incapable of self-determination prior to filling the prescription (ie the pharmacist will need to judge capacity)”
    Are we trained to make this decision? Is this not a clinical decision for a psychiatrist? The need to make a decision of ‘capacity’ terrifies me.

    3.” I’m confident that we are starting with a very sturdy bedrock on which to build the regulations.” This was also the view of the legislators in The Netherlands and Oregon but experience has shown that these well meant intentions have been increasingly thwarted. Boudewijn Chaboy’s regrets indicate that no legislation can make all people virtuous.

    4.”So long as there are people who are willing to question the motives of others, then we have the checks and balances needed to keep society working well.” Ditto (3)

    And now I have to finish cooking dinner – ciao.

  11. John Wilks
    30/10/2017

    The World Medical Association has declared its opposition to the Victorian euthanasia bill.
    (The Aust Oct 27 2017)
    How much longer will the Guild dither on this important ethical issues? Hopefully their response will be less equivocal than their recent confusion over S4 codeine.

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