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

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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

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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.

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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.

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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.

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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.

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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

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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.

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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.

Final Report – the Ministerial Advisory Panel on Voluntary Assisted Dying

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Final reportOver the next couple of weeks I’ll explore some aspects of this comprehensive, 257 page report in greater detail, including one post dedicated to detailing and discussing the 68 safeguards it recommends. Today, though, I’ll just cover the highlights of the final report from an expert committee that comprised representatives from medicine, nursing, health care institutions, the law, disability advocacy, and palliative care.

The biggest take away message is that this will be the most rigid assisted dying legislation passed anywhere, taking all the requirements, oversights, and safeguards used around the world, then adding more.

To start, applicants must meet all of the following requirements:

  • be aged 18 or over
  • be resident in Victoria
  • be competent to make complex medical decisions*
  • be diagnosed with a terminal/life-limiting illness, disease, or condition
  • have a prognosis of twelve months or less, and
  • have suffering that is not able to be relieved

Each element is detailed, from who can initiate discussions about assisted dying (only the patient) to the requirements of the two assessing doctors (one of whom must be qualified in the relevant specialty [e.g. oncology, if the person has metastatic cancer], one of whom must have at least five years’ post Fellowship experience, and both of whom must be fellows of a college, and both must have completed the required VAD training); from the timing and sequences of steps (three separate requests, on in writing, over a period of not less than ten days**) to when a person can change their mind (any time in the process up to and including the point of swallowing the medication); safe keeping of the medication, from a designated contact person who must return dispensed medication if not used, to storage of the drug in a locked box; and oversight, from tracking presented prescriptions to review of all cases by an expert panel, who are reported to at each step of the way.

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There are safeguards to ensure that unscrupulous relatives aren’t taking advantage of a vulnerable relative, with requirements both regarding competency (as mentioned earlier), and that witnesses to the person’s written request may not benefit from the person’s death. Similarly, in the event that physician-assistance is required (in rare case where the person either cannot physically pour, hold, and swallow the medication, or lacks the digestive process to safely swallow and absorb the usual oral preparation), there must be a witness independent from the assisting physician, to attest that the patient was willing right to the end.

The most significant aspect, consistent throughout, is that participating is voluntary for every person, at every stage. The requests must be made by the dying person; the assessing doctors have the right to conscientiously object; the nominated contact person must agree to taking responsibility for the medication and other obligations; nurses can choose to conscientiously object to involvement in education or facilitation of the assisted dying; and in the event that the patient needs physician assistance because they are unable to take the medication (either because of physical or digestive incapacity), the coordinating doctor must consent, along with the witness.

This is a rigorous, restrictive, robust document that provides consistent, thorough safeguards, strong review processes, and (in combination with registration requirements from the boards overseeing health professionals) penalties for breaches from and non-compliance with the regulations. Now we just need to get it passed.

 

* “The Panel considers that the four part decision-making capacity test in the Medical Treatment Planning and Decisions Act should be used to assess an adult’s decision-making capacity in relation to voluntary assisted dying. The Act is contemporary, having been passed in 2016, and is generally regarded as a appropriate to test decision-making capacity for a wide range of medical treatment decisions.” Ministerial Advisory Panel on Voluntary Assisted Dying Final Report, 2017 p. 60

** except in exceptional circumstances, when the person is highly likely to die within the usual waiting period

What is ‘euthanasia’?

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I wrote last week about a range of ethical issues at the end of life; this post will cover some of the same ground, from a different perspective, as I discuss what people can mean when they talk about assisted dying. It’s important to be clear, because if we’re using different definitions then finding accord is a magnitude harder.

At the least intrusive end is withholding life-prolonging interventions, from the highly technical and labour intensive (like ventilation or dialysis) to low-tech but invasive (like feeding tubes). A disease process is the cause of death, we’re choosing not to prolong the dying.

While it may feel morally different, withdrawing therapy is much the same, both in terms of the range of interventions, and the underlying proximate cause of death. In this case, instead of deciding not to introduce a life-prolonging intervention, we stop one that is currently in place; this is often because we had hoped it would be more effective in this particular case. For example, a person with end-stage respiratory disease may present to hospital multiple times with a chest infection; occasionally, a day or two of ventilators support is enough (along with antibiotics and other therapies) to resolve the acute exacerbation, but often the patient’s disease is so advanced that the patient now can’t survive unaided.

Next is the decision not to treat an acute condition (perhaps an infection) in a person who has multiple medical issues. These disease aren’t imminently life-limiting, but the patient’s long-term prognosis is poor, and death from the acute issue is often kinder (it’s easier to manage symptoms) and faster.

While there are many variations around eligibility and techniques, voluntary assisted dying is the legal provision of a method that will directly bring about the death of a person who has consistently expressed a wish to die.

Cases in this group can be further  categorised: in voluntary assisted dying the person is given the means to die, but commits the act themselves; in voluntary physician-assisted dying the mechanism directly causing the death is administer or performed by a doctor.

In Europe (eg the Netherlands, Belgium) the person must be suffering (definitions of ‘suffering’ vary), while in North America (eg Oregon) they must have a terminal diagnosis, with less than six months to live. If the proposed Victoria legislation passes, patients will need to be both terminally ill, with a time-limited prognosis, and have unrelievable suffering.
A key component of all the voluntary assisted dying laws is that the person assisted wants to die – they have made repeated, consistant requests for help to die. In some cases the laws allow those requests to have been made in advance, in the form of living wills, advanced directives, and other tools that allow a person’s wishes to be known in the event they can no longer voice them.

If a person is not competent to request or consent, has never had that capacity (an infant, perhaps, or someone with profound life-long incapacity), or has lost capacity (eg is now an a persistent coma, has advanced dementia) and not indicated that they would prefer to die, deliberately bringing about their death for humane reasons may be termed non-voluntary euthanasia. That person hasn’t consented, and their preferences aren’t known or knowable.

Finally, there is the spectre that looms over every discussion about assisted dying – involuntary euthanasia. This is the deliberate causing of death of people who not only have not chosen or consented, but actively do not wish to die. It was most notoriously used during Germany’s Third Reich to ‘eliminate’ populations the Aryan ideology deemed ‘undesirable’ or ‘life unworthy of life’ including people of low IQ, the mentally ill, people with significant neuroatypicality (autism spectrum disorders had not yet been identified), people with significant epilepsy, alcoholics, and the disabled.

There is no question that this ‘euthanasia’ or Gnadentod (‘merciful death’) was murder. I understand why some people have genuine concerns that legalising voluntary assisted dying is the first step on a road that leads to death camps. Here’s why that won’t happen.

First, the motivation and underpinning ideology is wholly different. The West, worldwide, was enamoured of eugenics in the 1930’s – a worrying number of intelligent people believed heritability was a major contributor to population traits. Get rid of the bearers of bad genes, went the theory, and we will engineer a super race of smarter, taller, faster, more beautiful people. Anyone considered socially undesirable could be sterilised, to prevent their flawed attributes entering the gene pool.

It was in that context that Germany introduced the idea of ‘mercifully killing’ children in institutions, for their own good, often without parental knowledge let alone consent. Within a few years, this policy was extended to adults, then expanded further still – always with deception, and never with the consent of anyone involved.

The idea of eugenics has no scientific credence today, and the overwhelming majority of people find it repugnant. Contemporary advocates for assisted dying are motivated by compassion for individuals, with a strong insistence on voluntariness, consent, and openness.

The cultural change needed to move that motivation some 180° would be significant, and strongly resisted not only by those who oppose current proposals but also those who advocate for end-of-life choices. To cohort voluntary assisted dying with the mass murder of unwilling innocents not only does a disservice to those people who are suffering as I write, but to the victims of the malignant ideology that underpinned murders masked as kindness.

The ethics of end-of-life decisions

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For almost all of us, everything about dying is fraught, even when the person involved has ‘had a good innings,’ a happy life, is ready to go, and faces a peaceful death. We live, most of us, in a death-averse culture that means, though we see celluloid and digital death with frequency, most often the first person we see dying or dead is someone dear to us. The process of actively dying, the signs that herald immanency, even the logistics of the aftermath, are new and worrying for many people. As a nurse I’ve had the responsibility and privilege of assisting people through these processes more times than I can count or remember, always bearing in mind that what is so familiar to me is frightening and overwhelming to my patient and their loved ones.

Something I have rarely written about here is that, as well as a nurse I have been an academic, with post-grad qualifications in health ethics and social health. My specialist education inform my practice, as my clinical experiences shaped (and were at the heart of) my theses; on this page, today, these influences once again work together to, I hope, create a more useful and comprehensive whole.

For many people, particularly nurses (we tend to be pragmatists), ethics is frustrating – instead of answers, one is often confronted with more, and often more difficult, questions. “Damn it!” one of my medical colleagues once exclaimed after a case review by a clinical ethicist. “Why won’t he just tell us what to do?!”

I, similarly, will not be prescriptive in this entry, but instead cross the landscape of dying-related ethical concerns and pose questions for the reader to ponder. My next entry will look at the spectrum of actions covered by the umbrella ‘good death’, while next week I’ll address the ethical issues raised by this legislation specifically.

Texts

As I’ll discuss more fully next time, there are various forms of assisted dying, all of which attract controversy from at least one corner. The most straightforward of these, at least from a philosophical perspective, is:

the distinction between withholding and withdrawing treatment
Is it assisted dying to cease an intervention, even if doing so results in the person’s death? Is this morally different from deciding not to initiate that intervention in the first place? And does the type of intervention make a difference?

Take, for example, a person with end-stage respiratory failure who presents to the emergency department with a chest infection. They won’t survive without the support of artificial ventilation, which means sedation, a tube down their throat, and a machine breathing for them until the infection is resolved. Set aside any questions of resource allocation, and just think about the patient in front of us, Ted. He’s desperately short of breath, has a fever, feels shocking, and is afraid.

Is there a difference between deciding not to offer him the machine (ventilatory support), and deciding a week later to take Ted off the machine because he’s now at the stage where he can’t and won’t ever be able to breathe on his own (ventilator-dependence). Withdrawing support isn’t what will kill him – that’s the underlying disease – but it can feel otherwise. Is the act of commission (withdrawing) ethically different from the act of omission (withholding)?

futile treatment
What should we do if, before being sedated and given ventilator support, Ted grasps the hand of his doctor, looks her in the eyes, and asks her not to let him die, even if that means he stays on a ventilator, chemically sedated, for the rest of his not-long life? Do we have an obligation to persist with futile treatment if that’s what the patient wants? What about if we have unlimited resources, so this doesn’t mean anyone else who could better benefit misses out on needed treatment? How about in the world we actually live in, where competition for resource-intense interventions (like ventilatory support, one-on-one specialist nursing care, and other supportive measures) is high? Does the fact that there are other people who need Ted’s ventilator, and who could resume a normal life after a brief period, mean his wishes carry less weight?

the doctrine of double effect (DDE)
It is still the case that some physicians are afraid to prescribe, and some nurses afraid to administer, very large doses of pain killers, in case the medication causes someone’s death, even if the alternative means leaving a patient in pain. This can be the case even when we know that people can develop tolerance for narcotics quickly, which means that the dose that was effective this week barely touches the sides next week. We also know that patients who’ve previously used narcotics, whether recreationally or as prescribed treatment, have or redevelop tolerance faster than ‘opiate naïve’ patients do, yet somehow this knowledge doesn’t diminish practitioners’ concerns, even when the patient in question both clearly needs pain relief, and is dying.

The doctrine of double effect was envisioned by Thomas Aquinas in the thirteenth century as a response to this and similar dilemmas (e.g. is it murder if you kill an assailant but intended only to deflect his killing blow) – provided the response is proportionate, and the intent beneficent (good), a moral agent has not done wrong if a foreseeable but unintended consequence results from their action. This means, for example, that you can increase a dying person’s morphine dose if they still have pain, but it doesn’t mean you can give a ten-fold dose, or give another kind of medication (like potassium). It also doesn’t mean that you can give a person whose condition is temporary (like someone with post-operative pain) a potentially lethal dose of pain killer – mercy must be tempered by the circumstances as well as prudence and intent.

Critics of DDE say that this puts an undue weight on intent, allowing people to skate moral responsibility for their actions, while a sadly large number of people have witnessed their loved ones die in pain because of practitioners unwilling to prescribe or administer the necessary amount of analgesia despite this centuries-old reassurance from the Catholic church that it’s okay.

the input of others
Traditionally, medical decisions were primarily made for patients by doctors – with both specialist knowledge and clinical experience, they have the most well-informed and objective position from which to make these grave decisions. As we moved away from paternalism towards consensus decision-making, patients got more right to exercise autonomy – instead of his doctor deciding alone, Ted has input and, to some extent, veto power. Provided Ted’s competent to make decisions, he can choose against some forms of therapy, but he cannot compel his doctor to perform interventions she believes are not clinically warranted. For example, Ted can decide against the ventilator, but he can’t decide to have a lung transplant – in his case the nature of his disease, his age, and concurrent medical conditions mean that he would be unlikely to benefit from or possibly even survive transplantation.

In the last few years, though, there’s be growing pressure to consider other voices, too – the opinion of family members. After all, they very often know the patient far better than health professionals could, and the onus of out-of-hospital-care usually falls to them, which can have a significant effect on their lives, too. In Hardwig’s Is There A Duty to Die? the author talks about the emotional and financial burden on an American woman in late middle age of her mother’s repeated intensive care admissions – the patient’s financial resources were wholly depleted, and the daughter (who had had to leave work) was seeing her own retirement funds being steadily eroded. She tells the author words to the effect of “I tell myself that she can’t see what this is doing to me. I don’t want my mother to die, but how am I going to live?”

This, of course, is one of the greatest concerns assisted-dying opponents have, and it’s far less of a predicament in Australia, with universal health care, than in user-pays America. I can’t say it doesn’t happen, but I have neither seen nor heard of physicians here making health care decisions about withdrawing treatment because of the potential negative effect on family.
What, however, of the converse – how much should we listen to family members exhorting us to ‘do everything’? And how much should we weigh in their opinion/s against those of a competent patient?

For example, there has been a highly publicised case from Belgium, where the son of a woman with long-term depression is suing the doctor who assisted her to die because he was not informed of her decision (except in an email his mother sent some months before her death, which he did not respond to). Leave aside the question of assisted suicide, recognise that this is not something that could possibly happen under the proposed Victorian legislation, and ponder this – if a competent patient refuses permission for practitioners to contact their family members, even if this means those people will not have an opportunity to say goodbye, are we morally obligated to abide by these wishes? If we aren’t, at what point does patient confidentiality trump the family member’s right to know?
As I said before I began posing these thorny questions, ethics doesn’t often give us unequivocal answers. But sometimes the questions it reveals forces us to consider aspects of our own emotional responses that we hadn’t considered. My next post will be equally complex, but less problematic: the kinds of medically-facilitated good deaths, and the questions they raise.

Coming up, what changes are in the new Bill (which will be released on Friday, July 21), and what is suffering?

A different focus

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I started this blog in 2012 in response to, and to document, the then-ANF (Vic. branch)’s epic enterprise bargaining dispute. Along the way I discussed other issues of relevance to unions, to the advancement of equity and social justice, and related current events, with the intent of explaining some of the underlying concepts, the elements that unite seemingly-disparate events and causes, and to inform laypeople about the less visible sides of a profession I love. In that spirit, and in keeping with those ideals, I’m going to once again focus for a time on one key issue – voluntary assisted dying.

I explained in a recent post why I support the upcoming Victorian legislation regarding voluntary assisted dying. As this will be facing parliament in the next two months, because I believe in the need for it, and because I’m now actively working to represent the needs and concerns of both nurses and our patients regarding this issue, I’ll be writing a weekly blog until the end of September summarizing the work various organisations, including Dying with Dignity Victoria, and Stop Victorians Suffering (the Victorian wing of Go Gentle Australia) have done. This will include embedded videos, links to articles, podcasts, and suggestions to readers who want to participate. I am also happy to respond to questions, should they arise – with the proviso that I expect mutual respect despite differing positions.

As much as possible, these weekly updates will also have a unifying theme (unwrapping the legislation, safeguards, the nature of suffering, for example). The following post is about the ethics of end-of-life issues, including assisted dying.

Why I support Victoria’s voluntary assisted dying bill

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Content warning: graphic discussions of dying symptoms

I wrote last week about the best kinds of dying trajectories, and about the difference quality palliative care makes to those whose deaths are inevitable and symptomatic. In many ways, palliative care nurses are midwives of death – helping a natural event progress with comfort, tranquillity, and a minimum of distress. Unfortunately, for a minority of people on dying trajectories, even the best care can’t relieve their symptoms.

When, as a student nurse, I first cared for a patient whose symptoms were intractable, I was distressed by but understood the pain – he had tumours in his bones, and was on massive doses of morphine (over a gram per hour, with breakthrough dosing of 300mg up to three times/hour), which helped. It was the other end-stage symptoms that he, and other patients I’ve cared for since, which most affected me: terminal dyspnea, where every single breath is fought for; intractable nausea, that persists, despite the best anti-nausea drugs, even through sleep; the gradual and relentless inability to perform activities of daily living, and the distress of this ever-growing helplessness; and losing not just the capacity to swallow, to eat, but even to manage one’s own saliva.

I have cared for many people who died gently, who drifted into sleep and never woke. They’re not the deaths I remember, though. Those memories are of the patients who struggled for each breath, faces etched with fatigue.

Of the woman who finally escaped the nausea that had relentlessly accompanied her for months, but died retching.

Of a man I assisted another nurse to turn, his deep, low moans reminding us every moment of the pain from tissues so filled with fluid that it leaked out of his skin to soak his linen every few hours.

Of the young woman with end-stage HIV, whose doctors were in denial about her dying and sent her to die in ICU, instead of on the ward surrounded by nurses who knew her, and family who loved her

Of my dialysis-dependent gentleman who was “sick of being sick” but treated for depression he didn’t have, instead of being allowed to die.

Of the patient not quite dead of motor neurone disease, whose partner literally begged me on their knees to bring her merciful death. I had to say no, their form blurred by tears that filled my eyes then, and now.

Thinking of these men and women always brings tears to my eyes – not only because of what they experienced before they died, but because we failed them. Our role is to care for all our patients, and to comfort those we cannot cure. To relieve suffering, not prolong it.

I have witnessed other awful deaths, but we were working to save those patients – replacing fluid, infusing new blood, restarting their hearts, combating infection, reversing life-threatening biochemical imbalances. For my patients whose dying is inexorable, inevitable, and wanted, delay is not only heart-breaking, it’s cruel.

Palliative care has transformed the lives of the dying, but there are some that even the most expert palliative care cannot help. From overseas figures, this amounts to somewhere between 0.5% and 2% of those who are dying – their symptoms will be resistant to our best interventions, and they will have suffering beyond pain, beyond our capacity to ameliorate. For this small proportion of our population, their only option now is premature death by suicide (while they have capacity), or an agonizing death witnessed by helpless, often guilt-ridden loved ones whose trauma persists long after the dying.

For these few we need another option. A carefully considered, strongly contained, rigorously monitored, compassionate alternative that allows those who are dying a voice, and a choice. We need a legalized process of assessment that the person applying for assistance is competent, is making an unpressured and consistent choice, is dying, and is or will experience suffering.

Victoria’s government will be introducing a voluntary assisted dying bill to parliament in the second half of this year. If it passes, it will be the most rigorous legislation in the world, and will be informed by the experiences and data from those North American states and European countries who have legalized these acts for up to two decades. It will be an option for adults resident in Victoria who have a finite (to be determined) time to live, who are competent at the time they make repeated, consistent requests for assistance to die, and who are experiencing symptoms of their condition that are unbearable.

I support this bill because I have seen too many people die agonizing deaths. We absolutely need to do this with attention to detail and awareness of the potential for misuse, which is why proposed legislation is clear, strong, and well regulated.

Even before I became a nurse I was in support of people who were suffering being able to choose when they had had enough; it seemed then, as it does now, that they were the ones with most at stake, and should therefore have most say. It’s past time to let dying Victorians have a voice and a choice regarding the ends of their lives.