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.

In praise of palliative care

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Like most laypeople, before I started nursing I had scarcely any understanding of just how much someone can endure before they die – my only experiences of pain were acute, so I had no awareness of the toll that chronic pain takes on one’s psychological defences, or how it affects endurance, sleep, tolerance, and the ability to withstand other symptoms. And that’s before you get to the emotional distress of leaving before you’re ready, or leaving those you love behind

Fortunately palliative care interventions can reduce most dying people’s pain to a manageable level. Other symptoms can also be managed – nausea, restlessness, and breathlessness are common – can also be well managed most of the time, for the majority of people who are dying. I’ll write about the exceptions next week.

I have cared for people who wanted to live every second available to them, and I respected and facilitated that. More common have been the patients who were dying well, their terminal symptoms managed by palliative care measures. And I’ve looked after too many people who should have had formal palliative care input, for this specialty is still too often confined to those with cancer, when we also need this expertise for those with end-stage diseases like heart, respiratory, and liver failure.

We need better palliative care services – improved access, especially in rural areas; early intervention; more funding for research, and for family support; and acceptance of its necessity in a wider range of cases, for anyone whose illness has assumed a dying trajectory.

Last year the Victorian government announced a long-term plan for the state’s palliative care services, including additional funding and goals that:

  • people experience the best end of life care
  • people’s pain and symptoms are well managed
  • people’s preferences and values are recognised and respected in their end of life care
  • better support for carers
  • people are cared for in their place of choice
  • where possible, people die in their place of choice (source)

These measures will make a significant difference to the overwhelming majority of people who are dying; for them, it will be what they need to die.

I love being a nurse; I love having the knowledge, skill, and compassion to improve my patients’ lives, to make them more comfortable with just the repositioning of a pillow, to reduce fatigue and pain with massage, to allay or hear their fears, to be able to explain what’s happening in language they can understand, to assess their condition and intervene before they deteriorate… and I appreciate the privilege of being able to make a little easier my dying patients’ transition from life.

I have witnessed some beautiful deaths – patients who were comfortable and at peace, who slipped away between one breath and the next, with families present or, sometimes, absent, because some people wait until they’re alone or at least only with nurses. I have helped implement care planned by expert palliative nurses and doctors, managed symptoms so that patients and their families could say goodbye without distress, performed mouth care to relieve the only discomfort of withdrawing hydration, massaged cream into cramped limbs, and read their unconscious faces and bodies to give boluses when pain or restlessness still reached them. These are the ideal – the deaths we all want for ourselves and for those we love. Thanks to the skill, knowledge, and expertise of palliative care nurses and physicians, these gentle and caring, comfortable and peaceful transitions are more common, and becoming available to more people.

876 days, and counting…

One year and two days after ANF (Vic. branch) released our log of claims, the public sector EBA has gone into effect – look for pay rate increases, back pay (to March 31) and CPD funds (where applicable) from your next pay.

Our officials are at FWA today, in Conciliation proceedings with RDNS; an acceptable final offer from VHIA for Mental Health nurses is looking promising; and Forensicare negotiations continue.
Even if all our EBAs were resolved tomorrow, I know none of us will quickly forget what it took to get even modest outcomes in the face of a government determined to erode conditions, remove ratios, deskill the workforce, weaken the profession, increase burnout and turnover, and compromise care – all for a dollar, and not even cost-effective in the medium term.

Victorians go to the polls in 876 days, which is just under 29 months away, Australians will vote some time in the next 511 days, around 17 months from now. In both cases we need to look not only at the leader we’re voting for, but the principles of their party. I know I don’t want to do this again in 2016, and I’m sure I’m not alone.

A professionally passionate position on assisted suicide

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There are a number of ways that I could approach this perennial issue that rouses strong and often polarising opinions. I have a graduate diploma in bioethics, and a masters in health ethics, so I’m well versed and better qualified than many to take a relatively objective stance and present a robust, solidly-constructed argument based on virtue ethics, Beauchamp and Childress’s Principles, casuist philosophy, or even a Hippocratic perspective. I could present an argument from self, about what I would want, and invoke Mills, who argued that there are limits to the reach of the state over the individual. Or I could, as SA nurse Sandy Bradley has, speak from a professionally dispassionate perspective, with citations and an academic tone.

These are all valid, useful ways to discuss assisted suicide/voluntary euthanasia, and reading these kinds of pieces have informed my position. But what has most strongly strengthened my commitment to the legalisation of assisted suicide isn’t theory, or research, or philosophical argument. It’s the patients I’ve cared for, and those for whom my care was woefully inadequate. The patients whose memories still bring tears to my eyes, a lump to my throat, and a sensory reminder of the frustrated impotence I felt when “everything we can do” wasn’t close to being enough.

I have seen people in kinds of distress I wish I never knew existed, experiencing so much pain it’s been hard to believe it didn’t kill them. The very first person I saw die vomited and retched until the moment she died, despite high doses of antiemetics. I’ve helped a colleague turn a patient whose limbs were so swollen with excess fluid that they wept, constantly, a physical grief reflecting his unending moans. I cared for a frequent flier patient, who I had come to know well over the course of almost a decade, who crawled up the ward corridor crying for pain relief I was forbidden to give her because the doses that would lower her pain would also kill her – she died less than a week later, still in pain. I had to tell the wife of another familiar and dear patient that I couldn’t help him die sooner, though it was what I wanted to be able to do even before she dropped to her knees before me, and begged.

Over a decade ago I heard Roger Magnusson talk about his doctoral research that, in part, described, the kinds of deaths that occurred in the absence of formalized, legalized assistance, and I was horrified by the lack of screening, the lack of dignity, and the effects on everyone involved. Earlier this year, at the ANMF (Vic branch)’s annual delegates conference, I heard Andrew Denton speak about watching his beloved father, Kit, die over an eternity of three days. It reinforced my belief that the time has well and truly come for Australia to join those countries and states that offer their dying and suffering populations another choice at the end of life, if the interventions currently available aren’t enough.

There have been dozens of Bills brought in front of parliaments across the country, with varying degrees of traction, but none with success – in part because there were inadequate safeguards to protect our most vulnerable, but mostly because opposition from organized religion (such as the Australian Christian Lobby) has been better mobilized, and louder; their position may be the minority one, going by every poll on assisted dying, but their voices are disproportionately heard, and that’s neither right nor fair.
 
I understand concerns about both coercion of people who are influenced by unethical family members, and the fear of a slippery slope to wholesale, state-sanctioned murder; I do not agree either or both are reason to prevent those who are dying, suffering, and beyond the reach of palliative care from having the option of a faster, kinder route to the death their condition makes inevitable. Instead any legislation should be informed by these reasonable concerns, by including rigorous safeguards to protect those at risk of underhand manipulation. I will write at some future point about how the ‘euthanasia’ committed by Nazi Germany in the 1930’s and 1940’s was not only qualitatively unrelated, but also the result of very different motivation; for now, suffice it to say that this is neither a likely nor plausible end point when we start by looking at compassionate, patient-centred, voluntary additional options for competent people who are terminally ill.

It’s okay, not to be okay 

I’ve just read a post on the FB page of the same name as this post – It’s okay, not to be okay post stories and support for and about Astralian men battling (and too often the ultimate victims of) depression. 

The story I read was exceptionally well written by the partner of a man whose depression overwhelmed him. Nicole’s pain was heightened by the fact that the notification of his death, by police accompanied by her mum, occurred hours after the birth of their baby. 

For me, the biggest takeaway message was a regret expressed to Nicole by one of Pat’s friends:

None of Pat’s friends were aware he’s suffered from depression…

One of his mates told me how much he wish[ed] he knew Pat had suffered, as [he] was a sufferer too and wished they could have talked about it. 

This is the silence that makes so many people with depression, particularly men, think they’re alone – not Pat’s mate, but society’s silence. And I understand it – for 29 years I told nobody of my episodic, far less malignant, depression, which is a long overdue story for another post. 

Though saddened and troubled by this account, what stirred me to write this post were the comments from people who, despite Nicole’s clear descriptions of Pat’s pain, still saw his death as “weak,” “selfish,” “a coward’s act,” and not something anyone would do if they really loved those they leave behind. 

MRI and PET scan imaging shows that major depression alters the way our brains work – it’s not something you can overcome through strength of will, fortitude, determination, or the live and support of those around you, and more than these would stop asthma or diabetes. 

This outcome may have been different if Pat had help (antidepressants, therapy, inpatient care in crisis, even much maligned but sometimes invaluable ECT), but mental ill health is so strongly stigmatised, and this ‘snap out of it’ mentality so prevalent, that he fought alone. 

For many people with major depression, the utter bleakness and pain of living is overwhelming. They may think their existence is a burden on those they love, that everyone would be better off without them. They’re wrong, but that feels so true they believe it. Surviving every day takes more work and courage for some people than many of these commenters will ever need to draw on. 

(by Matthew Johnstone, for SANE)

For people who still can’t or don’t get that, know this – first, you are luckier than you realise. Second, if you don’t understand, shut up. Your uninformed opinions about depression are not just unhelpful, they’re actively damaging to those surviving with depression, and those left behind when the disease was too much. 

If anything here has distressed you, or prompted you to seek help:
(Vic) SuicideLine 1300 651 251
(Aus) LifeLine 13 11 14
(Aus) SANE Australia 1800 18 72 63 (business hours, AEST)
(Aus) Suicide Call Back Service 1300 659 467
(Aus) Kids Helpline 1800 55 1800

Expressing frustration – how injudious venting can kill careers

Nurses are not alone in having positions where our work includes the potential for misuse of power over vulnerable people. As Australians have been appalled to learn in the last week, as footage of barbaric treatment of detained children was broadcast on Four Corners, there are professional cultures where egregious mistreatment (and that is an unquestionably mild categorisation) appears to not only be accepted but almost expected. 

Nursing is not immune to that – several years ago I wrote about the horrifying treatment of patients at Mid Staffordshire in the UK, the contributing institutional factors, and the injustice of focusing on clinicians alone instead of the managers whose policies not only facilitated but almost demanded it. 

It’s reasonable to expect that, at a bare minimum, those in our care are treated humanely and with respect. As I’ve commented several times on social media since the ABC broadcast, excusing corrections officers’ actions because of juvenile detainees’ behaviour misses the mark. I have been spat at, sworn at, threatened, slapped, pinched, bruised, groped, scratched, punched, and had projectiles from faeces to metal bed pans thrown at me; my colleagues have been sexually assaulted, knocked unconscious, partially scalped, contracted infectious diseases after being spat on, had bones fractured, and needed breast reconstruction after biting. Not only do we not retaliate  by dropping patients naked and leaving them, restrained and alone, to do so would justifiably be condemned, by our profession and the public. 

We are, however, human. We carry with us to work the same stressors everyone else does – relationship woes, family worries, financial concerns, inadequate sleep, colds that are enough to cause misery but not enough to warrant time off work… When work frustrations are added to that, sometimes something has to give. 

I love what I do. I get to make positive differences to people’s lives every day: my colleague said, through education and support; family members, with explanation and reassurance; most of all my patients, through skilled, compassionate, experienced nursing care. After returning to the bedside after over a year of illness, my commitment to providing that care is even stronger. 

I am proud of few things – I am privileged that most of my positive attributes come without work, so taking pride in something I have by good fortune would be ridiculous. I am, however, proud of managing my temper (which was once significant), and my still-evolving capacity to step back rather than engage and escalate conflict. These are not qualities that came effortlessly, for all their necessity in my position. 

Despite one’s very best efforts at calm, professional, therapeutic distance, sometimes someone manage to find your last nerve and play it like a virtuoso. And I recently had a shift that was dominated by a patient for whom I could do no good, as I was repeatedly told, but who nonetheless called for me multiple times each hour, only to react with anger and disparagement despite my genuine best efforts to help. 

It is fortunate that my other patients were stable, needing few interventions; I was certainly unable to assist and support my colleagues as much as I’d have liked. 

I know my patient was scared, distressed, anxious, panicked on occasion, enormously fatigued, sleep deprived, and angry. I also know that we are often safe targets – our patients know we won’t abandon them, or retaliate. I certainly hope they know that. 

And, despite my experience, my empathy, my knowledge, and decades of honing professional distance, I became frustrated – by not being able to meet my patient’s needs, by their expectation that I should know what they wanted without asking, by my every suggestion being shot down, by going over the same ground with repeated futility, by hours of belittlement. 

I didn’t express any of my frustration to my patient – though I took a slow, deep breath before responding to each call, every interaction was polite, warmly professional, as long as my patient needed, and I responded in under a minute on every singly occasion. 

The reason I was able to maintain this for my whole shift was because I vented my frustration to my colleagues. A little hyperbole, some fantasy, and I was able to optimistically smile the next time I walked through the patient’s doorway. 

All of this has been preamble to the point of this post. I also wrote a Facebook entry where I described my venting. There, as here, as always, I omitted identifying details. I made it clear that the issue was not so much my patient as my frustration. And I wrote about how this informal debriefing allowed me to work effectively, to provide professional care, to put my patient’s needs first. 

And I was reminded today that none of those aspects matter, because my post could have been enough to jeopardise my registration. The days of acknowledging the emotion labour of dealing with ‘difficult’ patients have gone – when text, absent tone, can make jest indistinguishable from the corrosive, toxic culture revealed last week, staying silent is the safest option. 

Every week nurses and midwives attend disciplinaries, recieve warnings, and face employment and registration consequences of social media activity. Oftentimes this is completely warranted, because of confidentiality breeches, employment conditions (don’t take sick leave then tweet about being at a music festival!), and the like. Sometimes it may seem like an overreach. Either way, determination isn’t made by those who know us and our intent – it’s made by people whose job is to safeguard the public, and who understandably err on the side of caution. 

I am no social media neophyte. As a union rep I have a better idea than most how inappropriate social media posts comprise a significant, and growing, number of disciplinary procedures. And even as I wrote my post I wondered how wise it was, even adorned with caveats and clarifying notes. 

So, for myself and for any health professional who’s made it this far, a reminder: before posting anything remotely work- or profession-related, think twice. And if even the smallest part of you has any doubt, hold back – you can always write it later, you may not be able to retract it. 

Nurses, death, and mourning

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Like all nurses of any length of practice, my clinical experience includes the most intimate moments of people’s lives. I suspect most laypeople think first of physical intimacies – bedpans and nakedness, though those are the least intrusive; for me and most of my colleagues, though, the real intimacies are less tangible – people who need to be strong for their families allowing themselves to be vulnerable with us; confiding long-held secrets and fears; making their dying days comfortable and calm; continuing care after their lives end. 

While nursing care and death work have been the foundation of my academic career, I realised today, after starting a response to ‘Nurses Grieve Too,’ an excellent guest post by Emily Rankin on Ian Miller’s blog The Nurse Path, that I haven’t written about it here. 

Like one of my favourite medical authors, American surgeon Atul Gawande, Emily introduces and closes her writing with the dying of a specific patient, while the body of her piece explores the emotion labour of grieving for and with our dying patients, wondering if we could have done more, and of needing to contain our emotions as we continue to care for our other patients.

Approaching her second year of registration, Emily is near the beginning of her career; I commemorated the 27th anniversary of my hospital-based education 45 days ago, and I long ago lost track of how many of my patients have died on my shift. I certainly don’t remember all of them, though there are some I will never forget. 

Like many nurses, I prioritise the care of the dying – as well as pain relief, sedation, and secretion management (do they stiffen or grimace when turned? Are their eye movements rapid? Is their breathing shallow, rapid, laboured, moist?), fundamental nursing practices like smoothing sheets to prevent uncomfortable wrinkles, flipping pillows to the cool side, frequent mouth care to avoid caked secretions and dry lips, position changes, and back rubs make a huge difference. Helping someone die well is a mitzvah, for them, their loved ones, and it also helps us.  

The deaths most of my friends and I remember most vividly are where the dying was not peaceful. Where the medical team, the family, sometimes (but rarely) the patient themselves pursued treatment long after the benefits outweighed the toll; where someone bleeds to death as we stand by, helpless to stop it; where end-stage organ failure means the only doses of pain relief high enough to treat condition A would kill them thanks to underlying disease B, so we have to see them suffering on their inevitable trajectory to death. 

We remember the young people, whose time was cut cruelly short; the confused and demented people, terrified by things only they can see; and the unexpected deaths of those who seemed to be doing well. 

I have shed tears for my patients, and for the grieving loved ones they’ve left behind; I hope that those who’ve seen the glisten of tears, the pinkening of my nose, also see compassion, without loss of professionalism. But I have not wept – whatever distress we feel, whatever we’ve seen and felt, the expectation is always that we keep going, absorb the experience, because it’s part of the job. 

I have once been offered formal debriefing, after a patient I didn’t know committed suicide on site. It was disruptive, distressing, and chaotic on several levels, but not close to the most traumatic experience I’ve had. Without in any way blaming my management (for this attitude pervades the profession at all levels), it is only these spectacular deaths that we’re ‘supposed’ to be troubled by – not the elderly man drowning in secretions we can’t stop, the young mum with congenital vasculopathy, the younger man with breathtakingly rapid progression to advanced HIV, the woman who’s been cared for by us over the eight year decline from neurodegenerative diagnosis to death, or the man whose decision to end dialysis was received with a diagnosis of depression and course of electroconvulsive therapy. 

I believe this lack of acknowledgement, along with intimacy, little direct control, the honour and responsibility of caring for people at their most vulnerable, and only rare opportunities to direct the residue of that labour and emotion, plays a part in why some of us speak to our patients while performing post-mortem care: we get to say goodbye, give uninterrupted care, and complete a journey that we have uniquely travelled.