20
Elayn could be the poster girl for this Era of Pain Mismanagement.
Opioid addiction is the US’s worst drug crisis in decades. In the UK, reasearchers from Imperial College London claim almost half the adult population is living with chronic pain, and their major problem is a lack of effective treatment. In Australia, the issue is also problematic. It is vining our aging world. On one side, doctors on the frontline of pain alleviation and on the other, drug industry groups. The reality: the drugs don’t work well enough.
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What no expert refutes: opioid drugs are highly addictive. As Elayn discovered. And sometimes, despairingly, pain is a cul-de-sac – there’s no way out of it, no way to relieve it. In 2016 the US government finally took action over opioid abuse after years of controversy, publishing the first national standards for prescription painkillers. The new US guidelines are nonbinding but it’s hoped they’ll create a river of change in current medical practice. Dr Andrew Kolodny, the head of Physicians for Responsible Opioid Prescribing, describes the US standards as one of the most significant medical interventions ever, by government: ‘This is the first time the federal government is communicating clearly to the medical community that the risks outweigh the potential benefits of these drugs.’
Their recommendations:
•Doctors first try ibuprofen and aspirin to treat pain.
•Opioid treatment for short-term pain lasts for three days maximum and rarely more than seven.
•Patients have their urine tested before getting prescriptions.
•Doctors check prescription drug tracking systems to ensure patients aren’t doctor shopping.
All these measures combined would have prevented Elayn’s slippery slope to oblivion.
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At the heart of the epidemic is a drug industry wanting to maximise profits. At the heart of the epidemic is no national, real-time system of prescription monitoring; it’s too easy to doctor shop. At the heart of the epidemic are doctors who don’t speak loudly enough of the risks of opioids when prescribing them. Doctors who hit the print button and have no time to explain, because the next person is already in the busy waiting room and the next. They need to talk things through, detail potential problems.
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The US government’s recommendations are a major about-turn from the giddy days of the nineties, which saw a rapid explosion of opioid use after claims they could be used for back pain and arthritis without fear of addiction. This was untrue. Before this, doctors had been accused of undertreating pain. But as opioid use rapidly increased, so did overdoses. And deaths.
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Doctors were once told that opioids like OxyContin or oxycodone were safe – and now they’re being told the opposite. All too late for Elayn. As a medical condition, pain is difficult to measure. The ability to tolerate it, or not, is highly individual. In my mother’s case a doctor wrote a short-term prescription for opioid use which triggered a long-term reliance. Did they have any idea what they were getting Elayn into? It seems that they did not – or did not care.
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It’s estimated that one in five Australians suffers chronic pain, which is classified as severe pain lingering beyond three months. There are different types and different options for treatment. Use of painkillers is only one. Elayn didn’t know enough about alternatives. I believe she would always have euthanised herself, just not at this point if she had investigated proper pain management. I wish she had considered a pain clinic, a specialist multi-disciplinary alternative. In Australia they’re underfunded, under-resourced and not well known enough.
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Researchers from the International Narcotics Control Board reported on the use of opioid painkillers – such as codeine, morphine and oxycodone – for most countries between 2001–03 and 2011–13. The researchers found that the worldwide use doubled across the period, and in Australia, more than quadrupled. Professor Richard Mattick, of the National Drug and Alcohol Research Centre, says patients may be staying on drugs too long – which increases tolerance, and makes the pills ineffective.
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The drug industry and some pain doctors bitterly oppose opioid guidelines. They argue new rules will create unfair hurdles for some patients.
There have been heartening strides in the treatment of cancer and heart disease over the past decades, yet relatively few when it comes to the epidemic of chronic joint pain. The situation’s becoming worse as our population ages. What also needs a lot more research: the correlation between chronic pain and depression. People with persistent pain often have a pull towards depression, as the pain is traumatising all aspects of their life, not just the injured area. It can wear you down, deplete your energy, flatten you. But which comes first? Chronic pain can be magnified by depression; depression can be magnified by chronic pain. They share the same nerve pathways as well as neurotransmitters – brain chemicals acting as messengers between the nerves. It’s a vicious cycle.
A combustible combination: the person prone to depression suddenly catapulted into the world of sustained pain. That was Elayn. Pain was her bully, constantly nibbling away at her equilibrium.
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What are also linked: pain and social isolation. It’s easy to burrow into your own tight little world in the thick of the pain, too easy. So few of us knew of the cruelty of Elayn’s new master.
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Codeine is the elephant in the room. Products containing it are restricted in some countries, but in Australia they’re still available over-the-counter at chemists. Some experts have proposed that people should have a doctor’s script to buy painkillers like Nurofen Plus and Panadeine, as well as flu medicines containing codeine. It caused an outcry at the time, yet the experts were concerned about ‘medical misadventure’ through codeine abuse. Fatal overdoses more than doubled between 2000 and 2009. The contentious proposal followed the release of a national policy framework, which warned that painkillers and tranquillisers were causing increasing addiction and overdoses. With our aging population there’s concern that painful conditions and anxiety disorders are on the rise – which means a new, older generation of drug addicts. Like Elayn.
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The organisation Pain Australia has issued guidelines for heading into the great battle with chronic pain. It urges a thorough understanding of the medicines being administered. But the organisation believes that drugs alone aren’t the answer. It labels medicine as ‘passive therapy’, and wants sufferers to be actively involved in managing their pain. This includes daily stretching and walking, factoring in rest and stretch breaks, and practising relaxation techniques like yoga – because when muscles are tightened they increase pressure on nerves and tissues, which maximises pain. And it encourages sufferers to find support, because chronic pain can be an incredibly isolating experience. No one understands.
Elayn was shockingly isolated. I didn’t realise how lonely pain can make you, or how profoundly it can transform a life. There was the euphoric joy after her foot operation: ‘I’m as high as a kite!’ There were months of the best time of our adult lives. ‘Look at my morphine patch, Nik, isn’t it pretty?’ But then the turning, the rapid turning, that drove her to her death.
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Doctors are now being offered training about opioids and chronic pain, and being urged to consider other remedies. Physical therapy, acupuncture, antidepressants, counselling. But alternatives are unrealistic for some people, or just not wanted. Elayn said she was too tired to investigate physiotherapy in her home. She tried acupuncture but it only gave limited relief, and she didn’t have the energy for much else. In the end she just wanted her opioids. It’s a highly stigmatised world. It is Elayn’s truth. A lot of elderly people’s truth.
21
For five years leading up to her death Elayn had been emailing the Australian euthanasia enabler Dr Philip Nitschke, and people in his organisation, Exit International. Philip tweeted about Elayn following the newspaper column I wrote, in a
nguish, asking if her death was empowerment or despair.
Nikki, it was empowerment! – your mother joined, #euthanasia PP Handbook, asked Exit forum Qs and imported.
In his in-house euthanasia shorthand, Dr Nitschke was explaining that my mother had purchased his Peaceful Pill Handbook, attended his Exit forums, and imported the illegal drug Nembutal, which was indeed the mysterious pink liquid in her freezer. In other words, she had broken the law. With that knowledge, I felt like I was stepping into a parallel universe. Elayn? Really? How did she become this? I felt so much anger, shortly after her death, at this euthanasia industry. At Dr Nitschke’s tweet about my mother, at the business of empowered death. Anger that his world makes it too easy and too private if you want that. That it enables people like Elayn to do it their way, all by themselves. Without pesky family or friends.
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Nembutal is sometimes sent by importers in perfume bottles to escape Customs detection. In Australia the drug is sent from Mexico, sometimes China. It’s a barbiturate used by vets to put animals down, known as ‘Green Dream’, and was once prescribed as a sleeping pill for humans. As a family, we don’t know who Elayn got to help her with delivery as it’s highly risky to get it sent to your house. The Australian Government lists barbiturates as a border-controlled drug and states that their illegal importation may attract criminal sanctions. Penalties range from imprisonment and fines of up to $825,000. It’s a lot to risk.
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Dr Nitschke is a former physician. His book, The Peaceful Pill Handbook, details how to die with dignity by your own hand. A peaceful, reliable method of extinguishing life is, of course, what a lot of elderly people dream of. To die in our sleep, without struggle or trauma, unreliability, mess.
Knowledge is empowering. For a lot of older people, anxiety about end of life choices revolves around a lack of control. Ignorance tips into angst. Dr Nitschke’s book argues that providing information does not encourage people to die by their own hand – it empowers them, which reduces anxiety. The Handbook explains that if an opiate like morphine, heroin or codeine is used it’s likely to be peaceful. Morpheus, after all, was the Greek god of dreams and sleep.
In Western countries where assisted suicide is a crime – which is most – it’s extremely difficult to work out how to kill yourself peacefully. And how to protect your family in the process. Elayn had done her research.
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The penalties for helping someone to die are severe. In Australia, imprisonment ranges from five years to life. In the UK, it’s up to fourteen years. Penalties in the US vary from state to state and only Oregon, Washington and Vermont allow assisted suicide, by a doctor. But strict residency rules apply. Nembutal is the drug of choice in all jurisdictions that allow it: Switzerland, the Netherlands, Belgium, and the handful of US states.
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Philip Nitschke’s organisation argues that assisted suicide should not necessarily be a medical event – you should be able to do it at home if you want to. The Handbook tallies up the effectiveness of various suicide methods, giving percentages for efficacy, peacefulness and reliability. Nembutal comes out on top. Overnight is advised as the optimal time for killing yourself, when others are asleep and it may be some time before you’re discovered, which negates the risk of being found too soon – and revived.
The Peaceful Pill Handbook advises taking alcohol alongside any pills to trigger death, to nullify the bitter aftertaste and to expedite the extinguishing of life – commonly used lethal drugs work faster alongside it. One of the drinks recommended as an enabler is Baileys Irish Cream.
Elayn did it by the book.
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Philip Nitschke claims he was the first doctor in the world to administer a voluntary and legalised lethal injection, when the practice was briefly allowed in Australia’s Northern Territory in the mid-nineties. He facilitated the deaths of four people. ‘It seems we demand humans to live with indignity, pain and anguish whereas we are kinder to our pets when their suffering becomes too much,’ he explained at the time. ‘It simply is not logical or mature. Trouble is, we have had too many centuries of religious claptrap.’ A ‘mature’ approach. Elayn would have appreciated that. She liked to consider herself evolved.
Dr Nitschke works mainly with older people and is inspired by them – he says they see this way as a practical approach. He argues that an individual person has a fundamental right to control their own death, just as they have a right to control their own life. He believes in having a ‘peaceful pill’ available for every adult of sound mind, and questions the view that suicide in our modern times is always linked to depression and mental illness. His book details dying in a way that quarantines a person’s family and friends from the scrutiny of the law.
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Nitschke’s Handbook advises that with Nembutal, sleep usually occurs within minutes of taking the drug alongside alcohol, and death within the hour. In the end Elayn chose not to use this method, despite managing to import it from Mexico from a supplier known to Dr Nitschke. Was she afraid that her batch had been contaminated; that it wasn’t ‘pure’? There have been concerns raised by euthanasia supporters in the past. There are testing kits for purity if you want to go down that path. Elayn was a thinker. In the end she opted to do it her way. She must have thought it was the best way to die. The most protective way. Of herself, and of others.
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An elderly woman’s voice was dismissed. By her family, by the wider world. But they listened at Exit. I track Philip down after his tweet. ‘She [Elayn] was always a person who was very clear in her ideas,’ he emails, ‘and we were always pleased she was an Exit member.’
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But I need to talk to him, need clues. He is open, sympathetic, considered. ‘There was a lot of contact with us in the last six months as Elayn was negotiating the practicalities of giving herself this final choice,’ he says on the phone. ‘It’s not uncommon for people like her to want to have their questions answered. But whether they want to talk with their families varies hugely. What you found is actually very common. Often people say to us, “Well, I haven’t told my family.” And when we ask why, one of the commonest remarks is that they’re worried about any legal risk to family members. They don’t want them to have any possibility of being caught up in the legal scenario. But another issue is that close family members will try and talk them out of it, or frustrate their plans. We’ve seen cases where children – thinking they’re acting in the best interests – do things like steal the drugs, or involve the police or psychiatrists. We’ve seen the whole spectrum of views. And in some ways the Right to Die movement is sometimes responsible for building up a fear; that people feel they have to be alone. In some ways it’s easier if the big discussions just don’t occur. But the situation that works out best for everyone is when people are able to talk things through, and an understanding is reached. So that when the death takes place the children are left with positive memories.’
Philip says Elayn was troubled by the thought of involving overseas dealers in supplying her Nembutal. ‘There are very predatory actions by the Australian authorities with attempts to intercept the importation of these drugs. Generally speaking, Australia has got a notorious reputation. That would have led to concern from Elayn about possible legal action for the receiver – in the case of assisting a suicide, you’d be looking at potentially fourteen years in jail, so all those things would have weighed on her mind.’
There’s also concern among Exit members that they won’t receive the right thing; that they might be cheated by an overseas dealer. ‘People really want to know that something is going to work. They don’t want to be messed around with something that might be salty or cut in some way, so the question of testing comes up. In the last year or two, people have been very keen to test. That issue about not being too sure, that you might be getting caught up in some kind of fraud, may have weighed on her mind. From her phone message she sounded like a person who was very anxious to get rea
ssurances about things.’
Of course she was. Elayn wanted effectiveness. The perfectionist would not have left anything to chance.
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She got one of her doctors to contact Dr Nitschke, explaining her situation.
‘That’s a bit unusual, having a doctor write to us giving an outline of her situation. I’m quite surprised that he did it. He must have been reasonable. The medical records that she sent us are quite extensive. The letter is addressed to me; it says “I’m Elayn’s treating doctor. She has asked me to explain to you that she’s been suffering chronic pain due to various medical admissions over the last year, and these pains have not been responding to medical management or analgesics. We are trying to find the root cause but it has meant her mobility has been extremely poor for much of this time.” She must have asked for that letter to be sent. I don’t know why. And what is interesting is that as a doctor, he responded to that.’
Dr Nitschke adds, ‘I’m sad Elayn had anxieties and concerns and a difficulty in getting information in the final months. She was fearful about who she talked to. It would have been so much better had she been more open about it. But she wanted to be careful, and wanted to protect people. But in the end I’m very pleased that she was able to put things together herself in a way that was exactly what she wanted.’
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I ask Dr Nitschke about fears that the legalisation of euthanasia could lead to unscrupulous people pushing their elderly family members into deaths before the time of their own choosing.
‘This is a common issue raised by those opposing change,’ Dr Nitschke responds, ‘that the vulnerable elderly will be pressured by unscrupulous relatives, and others, into doing the right thing etc. My response is that we currently see the elderly being pressured by family members; pressured to “keep fighting”, often against some hopeless medical situation. I’ve had many, many elderly Exit members tell me that they’re being urged by relatives to “not give up”, to try this new drug/chemo/treatment, when all they want to do is to be allowed to peacefully die. This is the commonest reason given for why family members are not told of their involvement with Exit, or their decision to import – for fear their plans may be frustrated. So, this “pressure to die”, if it were to occur were legislation to change, may balance the tyranny of the “pressure to live”, which is currently sanctioned. The other observation is that the ready acceptance that this behaviour will occur is to assume that the elderly are, by their nature vulnerable, which is intrinsically ageist. I get annoyed by those who often raise these spectres as reasons why the status quo should be allowed to persist, while failing to acknowledge the totally unsatisfactory nature of the current situation.’
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