On the matter of privilege

Tags

activism, breaking news, compassion, facty facts, fariness, human rights, passion, privilege

In the last 72 (or so) hours I’ve had six conversations about privilege. Each time I’ve been annoyed that whichever academic articulated the truth that attributes over which we have little or no control play a significant role in how we are perceived and how much (or little) we have to overcome didn’t choose a more palatable word to describe it.

Here are some of my privileges:

• I’m white, in a country and a dominant culture that prize caucasoid heritage and appearance

• I have been able-bodied for all but a small percentage of my life

• my parents were married and lived together throughout my childhood and adolescence

• my father was employed the entire time I was dependent on him

• I grew up never knowing food scarcity, and never worrying about a roof over my head

• my parents prized education, and read to me from birth

• I am intelligent and literate

• I am cis-gender

• I am middle-class and well-spoken

• I did not grow up at risk of or exposed to crime or illicit drugs

These privileges, which I had no input into and cannot take credit for, do not mean my life has been a cake walk, or that I haven’t worked hard for where I am now. They do mean that I had, and have, things easier that someone else who, all other things being equal, didn’t have those unearned advantages.

Acknowledging my privilege doesn’t mean denying or ignoring aspects of myself or my life that were disadvantageous. I experienced abuse; was raised by an alcoholic and a narcissist; spent much of my teens, all of my twenties, and some of my thirties with an eating disorder that’s now in remission; I am female, fat, and queer in a country and a culture that repudiates these to various degrees.

These and other aspects of who I am and what I’ve experienced don’t cancel out my privilege.

We live in a society that prioritises straight, white, cis, able-bodied, wealthy men. The more closely one fits that ideal, the more credit one is given – to be more readily heard, believed, perceived as honest/intelligent/promotable; the further away one is, the more likely one is to be ignored, mistrusted, arrested, convicted, attacked.

This doesn’t mean every straight, white, cis, able-bodied man has been handed life on a plate, has experienced no hardship, or lives a life of luxury.

It means that being aware of fortune makes us more compassionate. Noticing the distance we have to travel compared to those with less congenital luck makes us more likely to extend a hand to those with further journeys. Seeing systemic injustice makes us work to level out what we can, to increase fairness, equity, the proverbial fair go Australia prides itself on.

Surely there’s nothing so threatening in that?

Victoria’s Voluntary Assisted Dying Bill – it’s hanging in the balance (and I kinda know how it feels)

A shared post by Victorian Nia Sims, whose father died in distress despite palliative care involvement, and who writes from the perspective of both witnessing this and having scleroderma, a rare autoimmune disease that may result in her applying for voluntary assisted dying herself.

via Victoria’s Voluntary Assisted Dying Bill – it’s hanging in the balance (and I kinda know how it feels)

What do AMA members really think about voluntary assisted dying?

Tags

AMA, doctors, health, Victoria, Voluntary assisted dying

In my previous post I wrote about why we (including the media) should pay less attention to the pronouncements of the AMA on voluntary assisted dying, and instead look at organisations that better represent the population/s for which they speak. While there’s a general belief that the AMA represents most, or at least many, doctors, that’s far from true. Even taking that into account, however, the AMA’s stated position on behalf of its members isn’t as representative as it appears.

In 2015, the AMA (Federal) announced that it would review its policy on ‘euthanasia and doctor-assisted suicide’ , which had previously been unremittingly negative – a position that had, in turn, affected the willingness of politicians and the public alike to support various incarnations of assisted dying legislation. The review process, which concluded in 2016, included an online survey in which 3700 members participated. The conclusion? The AMA continues to oppose any legislation around assisted dying, but wants its members involved should such legislation come to pass.

A logical assumption from this is that the majority of AMA members, if not Australian doctors in toto, oppose voluntary assisted dying. But Neil Francis of Dying for Choice analysed the review process, in a fascinating report titled AMA Uncovered,  in which he examines design flaws that encouraged desired responses, on the analysis of results, and on the way the survey was selectively publicized to justify the policy. The full report runs to 50 pages, but I’ve summarised what I see as the key aspects to take into account when assessing the AMA’s ‘revised’ position.

Doctors often underestimate the severity of patient symptoms but want significantly less medical end-of-life care for themselves. Nearly nine out of ten USA doctors would not want intensive end-of-life treatment they provide to others. Yet patient death, despite its inevitability, is often regarded by doctors as a ‘failure’ of medicine, with many still uneasy even about withholding and withdrawing life-preserving interventions. – p.15

There are three main areas to appreciate about the original report, as unpacked by Francis.

First, the data comes from an opt-in survey that captured just over 3,700 AMA-affiliated doctors; as the AMA represents just under 30% of Australian medical practitioners, respondents to the survey represent 12% of AMA membership, and only 3.6% of Australian doctors.

What the methodology variations suggest is deeply-entrenched hostility towards assisted dying that has flowed through to substantial biases is the survey design. These in turn will result in significantly more negative responses toward assisted dying in later questions than if the AMA’s policy had been revealed later in the questionnaire, after doctors had been asked their attitudes about various facets of assisted dying. – p. 21

Second, the survey is multiply flawed, a fact that was brought to the AMA Executive’s attention and dismissed.  The most important of these flaws are briefly listed below:

• the way questions are worded means responses are less likely to be genuine reflections of respondents’ beliefs and more likely to be weighted toward an anti-assisted dying response (see p. 16 of the critique for specific analysis)
• the survey omits suffering or intolerable pain from its definition of euthanasia/assisted dying
• the survey definition of euthanasia/assisted dying includes neither voluntariness or competence, both of which are key requirements
• some established life-limiting practices (withholding/withdrawing treatment, the doctrine of double effect) are defined as separate to euthanasia/assisted dying
• the introductory statements prime participants to lean towards then-current, anti-euthanasia/assisted dying policy
• multiple questions presuppose a response in the framing of the question (e.g. “Do you agree…” or “To what extent do you agree…”
• the first two questions separate ‘good medical practice’ and ‘clinically appropriate’ treatment when they’re dependent components of appropriate professional practice
• similar, often successive, questions are differently constructed for no apparent reason
• at least one question rolls two aspects of euthanasia/assisted dying together: being compelled to participate in the practice and (if unwilling) being compelled to refer a patient to another practitioner

Third, despite these significant methodological flaws, Francis notes these outcomes, which don’t correlate with the AMA’s ‘revised’ position:

• 68% of respondents agreed suffering can’t always be relieved with even optimal palliative care
• 60% want doctors to perform lawful assisted dying (i.e. be involved if it’s legislated)
• just over half of those (32% of respondents) were prepared to be involved
• 52% said this is a legitimate intervention
• 50% disagreed with the AMA policy against E/AD “under any circumstances”
• over half of 20-29 year old respondents agree with euthanasia/assisted dying, compared with a third of those 70+
• when a question was reframed to ask about legalized euthanasia/assisted dying, approval rates jumped, indicating some resistance is because of illegality, not the act itself
• 35% of respondents thought euthanasia/assisted dying should be lawful

A couple of additional notes:

• Swiss, Dutch, and Belgian populations rank in the top 3 when it comes to trust in doctors (Aus is tenth); they have AD laws
• the AMA has published and not corrected information about E/AD that they know is false, including that palliative care deteriorated in Belgium; the opposite is true
• despite claims by many opponents, including AMA President Dr. Gannon, there has been no slippery slope targeting minors, incompetent people, or the vulnerable, in any jurisdiction (see pp. 31-32)
• an overwhelming majority of Australian doctors (SA: 89%, Vic 93%, NSW: 96%) believe patient suicide can be rational

 

Many Australian doctors don’t believe that the law is as important as medical and family consensus when making such decisions, and are inclined to ignore the law anyhow. – p. 19

Finally, and worryingly, it seems as though much of the opposition to or concern about this legislation is that a sizeable proportion of doctors don’t want this practice legalized. From the report, Francis notes that:

complementary research demonstrates 25% of Aus MDs support E/AD but don’t want it regulated/performed with oversight!

a significant proportion of doctors already deliberately assist patients to die, with neither protection of law nor, necessarily, patient consent

 

In a 2006 study “25% doctors were not opposed to euthanasia itself yet were opposed to its legalisation. In other words, a quarter of doctors thought ‘private’ euthanasia practice acceptable, but didn’t want the practice legalised.” The researchers said this was “in significant part due to ‘the resistance of doctors to further intrusion by the law and bureaucracy on their clinical and professional autonomy.’” – p. 25

I leave you with this observation by Francis, which should be particularly alarming for all of us (including opponents to voluntary assisted dying) who champion voluntariness, competence, and consent:

Francis, p. 39

Medical support for voluntary assisted dying

Much has been made of the AMA’s divided stances on voluntary assisted dying: while the Federal Association seems somewhat united, both past and present (the Federal president and three former Federal Presidents) have strongly come out against voluntary assisted dying.

On another the Victorian AMA President has both pushed back against this, and released a non-committal statement that neither supports nor opposes the Bill.

The AMA represents some 28,400 practicing Australian doctors, of some 66,660 registered medical practitioners and, as I’ll discuss in the next post, the official position does not so much represent the plurality, or even majority, of those members it has.

In contrast, the Royal Australian College of General Practitioners has over 35,000 members (making it “Australia’s largest professional general practice organisation”) and has come out in full support of the legislation:

(Source)

In addition, almost 80% of the Australian Medical Student Association support the Bill, demonstrating that the next generation of doctors appreciate the autonomy of patients whose dying suffering can’t be eased.

View from the ‘accessible’ section: Victoria’s delirious, heartening euthanasia vote

Nia has a highly informed perspective – an experienced nurse, she watched the protracted death of her father with cerebral cancer (recreated by Go Gentle in Stop The Horror), and is living with and dying from the autoimmune connective tissue disease scleroderma. For her, voluntary assisted dying is not hypothetical or professional but as personal as it gets.

Nia Sims

Image: View from a red velvet couch, Parliament House library, 6am, Friday 20.10.17

First published – Crikey.com, 23.10.17

By the wee hours of Friday morning, the mood in the house was slightly delirious. My friend, colleague and registered nurse Jane Morris and many others cried when the vote on voluntary assisted dying, 47-37, was finally declared to a packed house at 11am after a record 22 hour sitting in Victorian Parliament. It was met with a weary but fulsome round of applause from most in attendance.

My vantage point from the “accessible” section of the public gallery was one of the few perks of being, as far as I know, the only visibly seriously physically sick or disabled person to attend the sitting. I could see the entire public gallery, press gallery, and members to the right of the speaker. If I craned my neck forward, I could watch the…

View original post 694 more words

Dear palliative care nurses

I take pride in the calibre of nursing I provide – I’m good at what I do, thanks to a combination of aptitude, experience, education, compassion, intellect, and reflective practice.

So I understand why many palliative care nurses are upset, offended, angered, and otherwise unhappy about the voluntary assisted dying movement in general, and Go Gentle’s Stop The Horror film in particular – it seems to say that palliative care isn’t good enough, that too many people suffer at the end of life, that patients and families can’t trust their expertise, and that their expert, skilled, informed care isn’t valued or valuable.

I’m sorry that this is how the push for VAD is perceived. It’s not the belief held by anyone I’ve communicated with; without exception, their position is the same as mine – quality palliative care is the best, more effective, most appropriate intervention for the overwhelming majority of dying patients; we need to improve access to and funding for palliative care; and there are a small number of cases (industry estimates vary from 2-4% of patients) where symptom management is ineffective or inadequate, despite the best interventions available. These are the patients for whom another option is appropriate.

Acknowledging that there is still room for improvement is part of reflective professionalism and best practice. Responding to first-hand experiences of colleagues and family members with, “That wasn’t good palliative care!” is defensive and unhelpful – it means their experience is dismissed, along with a learning opportunity. Often that’s right – there were gaps in care, or in knowledge, or prescribing, or in anticipating how rapidly the patient’s dying trajectory would escalate.

And sometimes the person received the very best care possible, but their intractable nausea, terminal dyspnoea, restlessness and agitation, seizures, neurological pain, or distress couldn’t be resolved. That happens. It really does. Not often, but not never.

Transplanted organs reject. Antibiotics don’t succeed. Wounds don’t heal. Surgery is unsuccessful. Hypertension doesn’t resolve. Asthma doesn’t respond. Intubation isn’t enough. Labile BGL’s don’t stabilise. DIC runs rampant. HBO is ineffective. Chemotherapy fails. Autoimmune diseases rampage. HIV progresses. The flu kills.

Mostly we win the battle, if not the war; we never win the war – eventually, all our patients die. But whatever our specialty, we’re never effective all of the time. We’re just not. And that’s as true for those who midwife death as it is for those who work to defeat it.

Acknowledging that doesn’t invalidate our work, our value, our effectiveness, our professionalism, or the difference we make. It just means that we still have room for better.

I hope we’ll one day have no need for voluntary assisted dying – that nobody will suffer, and that all anticipated deaths are gentle. We’re not there yet, and it’s cruel to deny peace to those we can’t help enough.

7.30 – a response

Tags

health, media, Voluntary assisted dying

Last night, ABC’s 7.30 aired stories on two contentious issues that I support – marriage equality and voluntary assisted dying. It is the later I’ll address today, and starts at the 8-minute mark.

http://iview.abc.net.au/programs/7-30/NC1705H141S00

There were a couple of issues – first of all, Ms. Sales repeatedly refers to voluntary assisted suicide as “euthanasia;” the legislation soon to be introduced to parliament does not, except in exceptional circumstances, require or even allow physicians to administer the medication.

Second, the statistic of less than half of doctors supporting it comes from the AMA, which represents around 30% of Australian doctors, not even a majority of them. That said, I strongly suspect approval rates of assisted dying are very much lower in this group than in the general population.

I agree with Dr. Kaminsky that her “profession very much places an emphasis on ‘death equals failure,’ because our whole edict is to cure, to save life” – I’ve witnessed first-hand the distressing effects on patients, family members, nurses, and doctors themselves when they can’t accept the inevitability of death. It’s often said that doctors cure and nurses care, which I think does a disservice to to both our professions, and the impact of this inaccurate, divisive binary is worse for my medical colleagues. Doctors care, too, and they have an important role to play at the end of life, as is evident by the specialties of gerontology, general practice, and palliative care.

The problem is that Dr. Kaminsky is not distinguishing here between people who could be cured but aren’t being treated, and people who are inexorably, imminently, irreversibly approaching death – there is no saving available for them, only prolonging. And this ethos places the doctor at the centre of the situation, not the patient.

I wholly agree with Dr. Gold, with whom I’ve previously worked, that deliberately causing someone’s death would feel very uncomfortable. Even providing the means for a patient to do so themselves, even when they themselves have assessed that the person is choosing this, is competent, is dying, and is suffering, I do not imagine it will be easy. That in itself is one of the strongest, least slippery safeguards we have – doctors, like nurses, did not enter their profession to bring death, even to willing, eligible, pleading people; they study and work to make peoples’ lives better. It’s what ensures that applicants in Oregon are more often directed to other measures, including better palliative care interventions, than are prescribed medication to help them die.

Justine Martin, the multiply-unfortunate woman with MS, CLL, and SLL, articulates the desires of many people who have seen loved ones die badly: “I don’t want to end my life at the moment, but I want to know that if and when the time comes, that I will definitely have a choice.”

I agree with Michelle when she says that assisted dying can only be a real choice if excellent, expert palliative care is available. In addition to the Andrews’ government’s palliative care plan announced in 2016, palliative care services (from funding and resources to education and access) improve when assisted dying legislation is introduced, for that very reason – patients are better and more comprehensively assessed, and alternatives to assisted dying explored, including additional refersals to specialists and services.

And she’s right that coercion presents a genuine risk of influencing decision-making – which is why, as Dr. Carr points out, this legislation provides more safeguards for the vulnerable that they currently have. Assessing applicants, ensuring their requests are genuine, consistent, and uncoerced, will be a major part of the coordinator and consultant roles for doctors under the legislation, and of the legislation doctors will be mandated to undertake before playing any part in the process.

I fear that Dr. Kaminsky has not reviewed the advisory panel’s final report, because the concerns she raises are comprehensively addressed, from up-skilling doctors (a contributing factor in the 18-month period between the Bill passing both houses, and the Act going into effect), to how the medication is to be stored and who is responsible for returning it to the dispensing pharmacist if unused. There is more danger of unused narcotics “falling into the hands of a child” than a bitter liquid in a locked metal box, particularly as MS Contin and OxyContin are small and brightly coloured, Fentanyl patches can look like stickers or bandaids, and morphine mixture is sweet.

This is not an easy or straightforward issue. It shouldn’t be – it’s too nuanced, too important, and too open to misuse and error if not rigorously and robustly constructed. The Bill proposed in Victoria is tighter than any anywhere else in the world, incorporating the safeguards used in North America and Europe, in addition to measures unique to this legislation.

23/8/17 09:40
Edited to add: in a brief exchange on Twitter, Leah Kaminsky reported that she’d been quoted out of context, and has written a book about the realities of facing death; I have a copy on my teetering To Be Read pile – it looks particularly light-hearted and reassuring, given the subject matter, so I was a little surprised.
The ABC has a second item about the positions of the same three Victorian doctors, for those who are interested in a little more on this: http://www.abc.net.au/news/2017-08-21/doctors-divided-over-voluntary-assisted-dying-legislation/8827204

Caring at the end of life

A guest post by Victorian nurse Elisabeth Hall, who has changed identifying features about this patient whose dying, she says, is not atypical of her nursing experience.

I walk quickly, efficiently down the corridor, checking the six patients in my care this evening.

My lady in 24’s still with us. Drifting in and out of consciousness, her mouth hanging wide open revealing naked, pale gums, her dentures have been soaking in a plastic container on the bedside table for the last few weeks. It’s been a while since she could chew, and anything thinner than honey will slide into her lungs. All she can tolerate now are teaspoons of water mixed with thickened and, on good days, finely crushed tablets mixed with strawberry jam.

I wipe the corners of her dry lips clean of the white crusts remnants from the last time she tried to swallow some medication, reminders of how little dignity she has left; so little autonomy she can no longer dab her mouth with the monogrammed linen hanky she used to tuck up her sleeve, long since relegated to a bedside drawer, by the clothes she wore when she could still choose, and the large print mysteries she once used to escape the hospital.

At least she looks peaceful for the moment. Last night I gave her all of her prescribed ‘as needed’ morphine and midazolam, and still she cried out for her mum, long gone from this 90 year old woman’s life, to help relieve her pain.

Her bed has been lowered to the ground, with a mat on the floor beside it, just in case she falls while she’s trying desperately to find a position that is, if not comfortable, at least bearable.

I check on her often, gently changing her position, moistening her dry mouth with damp cotton swabs and minty lip balm, cleaning her frail body in stages so it doesn’t exhaust her. Jutting bones lie beneath parchment soft skin that I assess for signs of pressure injury, as I talk to her about what I’m doing, and the setting sun only I see through the curtained window.

I don’t know if she can hear me any more. Before she was so far along, when she asked me to please help her die, she told me she would have no visitors, had outlived most of her relatives and friends, had no children of her own.

Her wasted muscles are rigid, and she moans when I move her. Her face shows the pain, the discomfort and the utter aloneness that has dragged on for so long.

When my shift finally slows down, I go in and sit in the dark on the mat next to her. I hold her cold, gnarled hands and talk to her quietly, trying to soothe her; this intimate moment feels like a single drop of comfort in an ocean of unrelenting suffering.

I pump hospital-stock moisturiser and massage her hands, comb her shock of white hair. Her breathing is uncomfortable to watch but I’m certain it’s much more uncomfortable to experience.

This woman, with her brow furrowed in mostly quiet suffering, is a palliative care patient. She has been cared for by nurses, visited by doctors, ministered to by a chaplain. They have all done what they can to ease her pain, her breathlessness and her distress. We do our best to care for her, but cannot release her and end her terminal suffering.

All we can do is wait, watch her deteriorate and hope we never have to see a loved one in the same situation, swear to ourselves that we’ll find a way to end it if it ever happens to us.

We go home, make our family or friends promise them that they’ll help if we ever end up in such a way. We go to bed at night and replay our shift, cry quietly to ourselves, feeling both silly and useless. This isn’t even one of the awful ones.

Many of us will think of assisted dying, and hope that one day the laws will have changed so that we can help other patients end their journey on their own terms, without pain and with their dignity. With someone holding their hands, in the place of their choosing, and with relief in their heart.

Right To Life’s latest tactic

Tags

ethics, health, politics, Voluntary assisted dying

Three days ago Nick Staikos, the MP for Bentleigh, tweeted about a leaflet his constituents had received – at first glance it could be construed as coming from his office, rather than from Right to Life, and Mr. Staikos did not appreciate the confusion.

This will be a conscience vote, which means each parliamentarian will decide for themselves, ideally based on review of the facts, and reflection on the best interests of the people of Victoria. The seat of Bentleigh is one of a small handful of very marginal seats – over a month ago, the Australian Christian Lobby announced that it would be targeting these seats, and “vowed to derail the legislation and electorally punish MPs who end up supporting it”.

I have no problem with lobbying – those of us who want this legislation passed will also be calling on like-minded people to contact their MPs, will (as I have) write to papers and post things on social media. The key difference, as I see it, is that while the people I’m talking with are very careful to remain accurate, calm, and support our positions with facts, those who think differently appear to be a little less cavalier with the truth.

I was given a pamphlet that, as far as I can tell, differs from the one distributed in Mr. Staikos’s electorate only by the MP details. Let’s take a look at it.

I’ll set aside the fact that Right to Life have created a false binary (in which suicide prevention is antithetical to assisted dying) and note that, not only is this intentionally inflammatory, it falsely conflates suicide (the intentional ending of one’s viable life) with the inevitable death of a person in the end stages of a fatal disease, illness, or condition – in the case of the former, intervention can result in a healthy, happy life; in the latter, the only question is whether the end will be comfortable and on their terms, or tormented.

First of all, the “government-sanctioned suicide” will not be by doctors – except in rare cases, where patients are unable to do so because of physical or digestive reasons, the role of doctors is to assess, advise, refer as appropriate, educate, and (if indicated by the screening process and the patient’s unwavering intent) prescribe. The use of the phrase “sick and inform” is hard to read as anything but intentionally misleading – anyone accessing this legislation must be nearing or at the end of life, from a disease, illness, or condition, and have suffering that not able to be adequately managed, aand be competent, unwavering, and uncoerced.

The question “Is he trying to save healthcare dollars?” is an egregious allegation. While it’s true that people on average consume (for lack of a better word) more health resources in the last twelve months of life than at any other time, that is rarely because of palliative care; far more often it’s because death is fought, with ICU, investigations, expensive imaging, and surgery. I have spoken with doctors, Victoria’s Health Minister, other MP’s, palliative care and hospital administrators, and not once have any of these people mentioned money. More than that, I have cared for patients for over a quarter of a century, in Victoria’s public system; despite the pressure for beds, and KPI’s, and review meetings regarding length of stay, nobody has ever suggested cost as a reason for transferring a patient or changing their care. If the Premier were motivated by that, a) surely he would have brought this up as an option earlier, either pre-election or when he was health minister, and b) his position wouldn’t have changed following his witnessing the dying of his father.

Right to Life end the facing page with equal distortion. We already have world class patient care, improving palliative care resources, and nobody is killing other people. The line “the life you save may be your own” is ridiculous – even in Belgium, where some of the most liberal laws are in place, people are not at risk of being killed against their will. Oregon’s laws are unchanged in two decades, and Victoria’s Bill is even firmer – this is nothing but fearmongery.

Onwards.

Apparently Right to Life are unaware that Britain comprises England, Scotland, and Wales…

It is true that, over time, utilization of these laws increases – as is the case with anything novel, from smart phones to laparoscopic surgery:

“If you legalize on the broad basis (that) the Dutch have, then this increase is what you would expect,” said Penney Lewis, co-director of the Centre of Medical Law and Ethics at King’s College London. “Doctors become more confident in practicing euthanasia and more patients will start asking for it,” she said. “Without a more restrictive system, like what you have in Oregon, you will naturally see an increase.” (source)

In the Netherlands, that increase is from 1.7% of all deaths in 1990 (before the introduction of legislation) to 4.5% in 2015; in Belgium

It is also true that both the Netherlands and Belgium have widened the parameters under which assisted dying may be provided, and that a person who has unbearable suffering without realistic likelihood of improvement meets the criteria, even if that suffering is psychological rather than physical. In the table below, “Underlying illnesses of Dutch assisted dying cases (proportion of all deaths)” (source), those patients are represented in bright blue, and account for some 3% of all assisted deaths in 2015. Cancer, which is the cause of almost a third of all deaths in the Netherlands, also accounts for the overwhelming majority of assisted deaths.

It is utterly untrue that the Oregonian law allows people accessed to assisted dying because they have a mental illness. A person must be:

1) 18 years of age or older,
2) a resident of Oregon,
3) capable of making and communicating health care decisions for him/herself, and
4) diagnosed with a terminal illness that will lead to death within six (6) months. (emphasis added, source).

Absolutely nothing there about mental illness being a reason to access the Act though, as here, having or having had a mental illness does not prevent someone applying, provided they are clinically competent.

Ms. Tighe’s pamphlet also refers to 431 people in the Netherlands whose lives were ended without specific request, and that appears to be accurate – on CBS’s statistical summary dated May 24 of this year, the breakdown of 7, 254 assisted deaths (of a total of 147,134 for the year) includes 431 titled “Levensbeëindigend hand. zonder verzoek” (or ‘assisted, end-of-life, without request’). That’s 0.059% of the 4.9% of Dutch deaths that are assisted, and that figure doesn’t tell us anything about the cases, or prior directives, and as 350 of those cases were patients aged 65 and over (201 of which were over 80), it is fair to assume many involved end-stage dementia.

This is certainly not ideal, but it’s also not applicable to the Victorian situation, where competency is an integral component of the process. It’s a pleasant to change to find a verifiable, accurate fact in this pamphlet, albeit one I suspect is also the worst Ms. Tighe’s organisation was able to find.

Speaking of verifiable facts, when we turn the page we find three cautionary cases from Oregon of women who were either forced into this option, or avoided it and lived happy lives.

As there are no citations, I have had to search for these stories myself.

Ms. Wagner’s case was publicised in 2008 when, after several years of treatment with first and second line chemotherapy, her insurance company refused to pay for an experimental drug that would potentially extend her life from four to six months, as Tarceva did not meet their requirement of 5% survival at 5 years. Indeed, at the time the drug made no significant improvement for 92% of patients, though it did induce rashes, diarrhea, and other unpleasant side effects in 19% of people taking it. Instead they were only prepared to cover palliative and comfort care, which included (but was not restricted to) assisted dying. After the media storm, the drug manufacturer agreed to cover the futile treatment; there are reports that Ms, Wagner died shortly thereafter.

Ms. Packer lives in California, and was anti-assisted dying well before any discussion about treatment funding. She was diagnosed with scleroderma, an autoimmune disease that causes scarring of body tissues, which was treated with chemotherapy; after three years, she entered negotiations with her insurer who, after five months, agreed to cover an alternative treatment, then changed their mind.

Packer then called her insurance company to find out why it wasn’t covered, and in none of the articles, Packer actually tells us why. You’d think that information would be useful in a news article about coverage denial. Instead, while on the phone with her insurer, she asked them if they cover the assisted suicide drugs and they said yes. The insurance company did not “offer to pay for her to kill herself.” (source)

Even if these cases had happened as described, they would not be reason to vote against the Victorian bill – Australia has universal health coverage, the overwhelming majority of people who need end-stage support use public facilities, and our private health insurance is voluntary, and paid by individuals – any company that instituted an policy that disallowed proven treatments with genuine outcomes would be abandoned by members in droves.

Death With Dignity have discussions about these and similar cases presented by groups like Right to Life, though Elizabeth Hall is not one of them. Google searches for “Elizabeth Hall” + “bowel cancer” + “assisted dying” came up with no relevant hits, and searches substituting “assisted suicide” and then “euthanasia” were similarly fruitless. There are insufficient details related on the pamphlet to know if the mysterious Ms. Hall would have met Oregon’s requirement of a six-month (or less) prognosis, but the number of people with end-stage bowel cancer who survive more than five years (let alone 15+) is very low.

What’s my take home message about these pamphlets? They certainly don’t seem to be created with education in mind, or even an argument against assisted dying based on any kind of coherent platform. Instead they have been written to heighten fear and apprehension, with deliberate skewing of the facts, and omission of vital information. If your argument can’t stand in the light, if it must be cloaked in emotion and distortion, then it isn’t robust, it isn’t valid, and it isn’t worth listening to.

Safeguards

Tags

assisted suicide/voluntary euthanasia;, campaigns, health, human rights, legislation, nursing, politics, Victoria

One of the objections about assisted dying legislation is that vulnerable people will die, through coercion, because they feel like a burden on their families, for financial gain, or because their care is expensive or onerous. These are valid concerns to have – we know that there are unscrupulous people who take advantage of even their own relatives, that not all health practitioners are wholly ethical, and that there are financial pressures on health facilities at every level. And many of us have heard reports from overseas about people who didn’t meet the criteria being killed under the auspices of assisted dying laws, or weren’t reported to the government. While on closer examination these reports invariably turn out to be distortions or unsubstantiated allegations, a topic I may address at another time, the fear they address is a reasonable one – even if they haven’t happened, they could.

Last week, when I briefly summarised the final report of the voluntary assisted dying expert advisory panel, I mentioned some of the 68 safeguards that are in place. Today I’ll go into detail about the requirements and regulations that will be implemented to prevent this legislation being misused.

The first six safeguards ensure that requesters meet all of these threshold requirements before the process starts. They must:
• be eighteen or older (this law will not apply to minors),
• be resident in Victoria (people can’t travel here to die with assistance),
• be competent to make significant medical decisions (using the same standard the Medical Treatment Act, 2016, requires),
• have a life-limiting condition, illness, or disease (e.g. metastatic cancer, end-stage heart failure, motor neurone disease),
• have a prognosis of twelve months or less (their death is inevitable, and not distant), and
• be ‘experiencing enduring and unbearable suffering that cannot be relieved in a manner the person deems tolerable’ (e.g. for that person it may not be acceptable that the only analgesic dose sufficient to make their pain bearable makes them unconscious),

Note that a person must meet all of these criteria before the process of assessment can begin; in contrast, in the US people do not need to be suffering, while in Europe it isn’t required that they be dying.

The legislation specifically notes that disabilities and mental ill-health are neither barriers to, nor reasons for, voluntary assisted dying. In other words, someone may not access assisted dying because they have, for example, significant cerebral palsy, or are paraplegic, or have clinical depression, or schizophrenia – the requirements for a life-limiting illness, condition, or disease, a terminal prognosis of under a year, and enduring suffering, apply universally. Conversely, people who meet all the other criteria cannot be deemed ineligible because of a physical disability or mental ill-health.

The rest of the safeguards are divided into areas of protection. First are measures to ensure that the request process is voluntary:
• health practitioners are prohibited from bringing up the option of assisted dying with their patients – it must come from them,
• nobody except the person can request on their behalf, even someone with medical power of attorney and an advanced directive demonstrating that this is what they want,
• there must be three requests, over at least ten days, one of which must be written, and witnessed by an independent person, and
• the person can change their mind at any time, including after the prescription has been filled.

Next is the process of assessment, which is clearly and tightly described:
• two independent, experienced medical practitioners must separately assess the person (overseas this typically takes 60-90 minutes per consultation),
• only doctors who have undertaken specialized VAD training may be involved,
• the two assessing doctors are designated the coordinating practitioner and the consulting practitioner, each with well-defined duties, and
• either doctor may, and is obliged to, refer the patient to a mental health professional if they have concerns about the person’s decision-making capacity,

There have been concerns about prescribed medication going missing or being taken accidentally. To that end, the following measures will be introduced:
• the prescribing doctor must have a specific permit,
• the patient must nominate a contact person who agrees to take responsibility for returning the medication to the dispensing pharmacist if it is unused,
• from the time it is dispensed until it is taken or returned, the clearly labelled medication must be stored in a locked box,
• if the patient is unable to self-administer (e.g. is unable to swallow, has restricted arm movement), the coordinating doctor (and only the coordinating doctor) may administer the medication, and
• in that case the doctor must have additional certification, and the administration must be witnessed by someone who is independent of the doctor.

Unsurprisingly, health professionals, particularly doctors and nurses, have concerns about their roles, from being forced to perform acts with which they object, to being prosecuted. To protect them,
• health practitioners may conscientiously object to participating,
• there are protections for health practitioners who are present at the time of administration, and
• health practitioners will be required to report any practitioner acting outside the legislation.

There was a question raised about criminal consequences for health professionals who act outside the scope of the legislation – initiating a discussion about the option of assisted dying, for example. That is not specifically addressed, as there are already consequences for health practitioners who break the law or otherwise act in breach of the standards of each registered profession (one of which includes following the law), and charges of manslaughter and murder are not affected by the introduction of voluntary assisted dying legislation – it is still a crime to aid or to abet a suicide, or bring about someone’s death, except for the carefully delineated circumstances surrounding this Act. There will, however, be new laws introduced: failing to report any step, inducing or influencing a person to request or participate in assisted dying, and falsifying reports to the oversight and review panel will be criminal offences.

Finally, there have been allegations that not all deaths overseas that take place under the auspices of an assisted dying framework are reported or investigated appropriately. In Victoria, part of the process includes the creation of an independent multidisciplinary oversight and review panel. They are notified at every step of the process, from the first formal request to notification of death. Included in this process is notification whenever a prescription written to assist dying is filled. The patient’s contact person is tasked with returning the medication when the patient dies, if it was not used; if they fail to do so, the panel is empowered to follow up with them about the location of the medication, and ensure it is safely accounted for.

The oversight and review panel’s role will be enshrined in legislation, and it will have the capacity to refer breaches of the legislation to the appropriate authorities, from the health regulator AHPRA to the police. The panel will review every case, transparently report publicly, and publish a review after five years.

The expert advisory panel estimates that it will take eighteen months to set up all of the required safeguards (e.g. medical education) and legislative changes, before the first requests can be made.

But first the Bill has to get through both Houses of parliament. Which is where you can come in: if you support the legislation and you live in Victoria, please contact your lower and upper house MP’s to let them know – they can’t represent their constituents if they don’t know what you want.