Dying wishesby Rebecca Macfie
Polls show most New Zealanders support assisted dying for the terminally ill, yet our politicians seem unwilling to confront the issue. Should the law be changed to give us the choice of an easier death?
Evidence of a meticulous intellect at work sits in high stacks of convoluted documents in the Wellington office of Lecretia Seales. Every day, she makes her way from the Karori home she shares with her husband, Matt, to her 19th-floor Featherston St workplace to devote another fraction of her precious remaining time to one of her life’s abiding passions: law reform.
A senior legal and policy adviser with the Law Commission*, she is also, at 41, dying of brain cancer. And in what may be one of her last acts of devotion to the law, she is speaking out for autonomy and dignity in the manner and timing of her inevitable premature death.
“I am not afraid of dying, but I am petrified by what may happen to me in the lead-up to my death,” says Seales. “My greatest fear is that my husband will have a mad wife to deal with, like Mr Rochester in Jane Eyre. As far as I’m concerned, if I get to a point where I can no longer recognise or communicate with my husband, then for all intents and purposes I will already be dead. Nor do I wish to be a prisoner in my own body, unable to move and lying in my own excrement.”
She is not depressed, nor is she fixated on the possibility of a painful death preceded by the loss of her physical and mental capacities. Quite the opposite: her mother, Shirley Seales, says she is extraordinarily tough and well adjusted. And Seales herself says most of the time she pushes the fact that she has terminal cancer out of her mind and “pretend[s] that I’m going to live”.
But she has considered how the law in New Zealand provides for a person in her position and has found it wanting. If she was in the Netherlands, Belgium, Luxembourg or Switzerland, or in the US state of Oregon, Washington, Montana or Vermont, or in the Canadian province of Quebec, she would have the option of seeking help to die if she faced unbearable pain or suffering as a result of her illness.
If a private member’s bill drawn up by then Labour MP Maryan Street in 2012 had become law, she would have that choice. But the End of Life Choice Bill sat in the parliamentary ballot box for 18 months before Street eventually withdrew it in late 2013, having got the “clear impression” from colleagues that they would vote it down at first reading if it was drawn in election year. “That would have set the issue back massively,” says Street, a passionate proponent of legalised assisted dying for the terminally ill.
Labour MP Iain Lees-Galloway took the bill over from Street, who lost her list seat at the last election, but in December was told to ditch it by party leader Andrew Little, who sees it as a distraction from the task of rebuilding the party and secondary to the key issues of jobs and the economy.
Friend and mentor Sir Geoffrey Palmer says Seales is “a first-rate lawyer”. Palmer – her former employer at law firm Chen Palmer and then at the Law Commission – describes her as “persistent and industrious, but self-effacing. She is just a wonderful human being – balanced and pleasant and charming.”
At the Law Commission, Seales has a leading role on a major review of the law of contempt of court. Through her contribution to the commission’s groundbreaking work on alcohol reform, she has helped to put greater power in the hands of communities pushing back against the insidious spread of booze outlets in their midst. Her review of the way New Zealand treats those who fight for their country has led to a major overhaul of compensation for war veterans.
Seales’ cancer was diagnosed in 2011; the tumour had already colonised a quarter of her brain. It should have been picked up earlier. There had been warning signs, including headaches and a loss of peripheral vision on her left side, but the optometrist she consulted put her symptoms down to tiredness and overwork.
One evening, driving home from a cake decorating course at Newlands College, she hit a dark-coloured car parked on the left. It was another red flag, but a person from a neighbouring house who came to her aid said it had happened before on the same bend, and Seales rationalised it away as the result of inattention and bad luck.
She and Matt had other things on their minds around that time: they were trying desperately to have a family. They had gone through six painfully disappointing rounds of IVF and were in the process of arranging to go to San Diego for an egg donation. There was a hold-up – they wanted the donation to be open, rather than anonymous as is normal, and were waiting for the donor to consent.
In late 2010, Seales was working crazy hours on a short-term secondment to the Department of the Prime Minister and Cabinet. Over Christmas that year, by which time she had returned to the Law Commission, the headaches became more severe. While she and Matt waited for word from the egg donor, she insisted that her GP refer her to a neurologist.
It took three months to see the specialist, who sent her for an urgent scan. A note on the referral sheet said “suspected abnormality”.
By then it was March 2011. The diagnosis was bleak: oligoastrocytoma grade 2 (on a spectrum of 1 to 4, in which 4 is the fastest-growing), and the less aggressive oligodendroglioma. Rather than a well-defined “bulb” that could possibly be surgically excised, the tumour was diffuse, with tentacles reaching into the nooks and crannies of Seales’ brain.
Given weeks to live
Shirley Seales recalls how her beloved eldest child delivered the news: “She said to me, ‘You know how I always said I would look after you when you get old? Well, that’s not going to happen now.’”
At first, Seales was given only weeks to live. The large tumour was pressing on her spinal column and there was a risk she could go into a coma and die; she underwent urgent surgery to “prune” it to relieve the pressure.
Since then, the predicted weeks have stretched into three-and-a-half full and active years. In the weeks of recovery at home after surgery, Seales resolved to live out whatever remained of her life with the same determination and drive that had enriched her first 37 years.
“I really want to live while I am still living,” she says.
She returned to the Law Commission, but with slightly reduced hours. With Matt and her parents, she travelled to Argentina in 2013 and to Morocco in October last year, where she had to be hoisted up and down flights of stairs by Matt and her father, Larry. Last year, she also went to San Francisco with Matt, and to Bermuda to visit an old friend. At home, her enormous circle of friends and family have pulled into a tight band of love and support.
She has learned to live with the paralysis that is gradually depriving her of the use of one side of her body. Her left leg, arm and hand no longer work properly, and she can’t see anything left of centre. She is not allowed to drive. She still walks, but with difficulty and often with a stick. She has been forced to admit that her left hand is not up to the job of manipulating her tights over her “useless” left foot, and now accepts that it’s best if Matt helps her from the outset rather than untangling her after a frustrated attempt at independence. She has been forced to accept that she needs help in that most intimate of tasks – putting on a bra.
When Matt, a senior IT industry manager, is overseas on business, all this support is provided by her parents, who travel from Tauranga, or by the army of devoted friends who will come at the drop of a hat to get her dressed, fed and to work.
Seales is confronting the fact that another of her great passions, cooking, is sliding out of her reach. She no longer has the strength in her left hand to pick up a pot or to hold an onion steady on the chopping board.
Her mind remains sharp and in command of the labyrinthine legal concepts that dominate her work, but when she reads, the page dances around. Her once highly tuned sense of direction has become fuzzy; she gets lost easily in unfamiliar places. She bumps into things because her spatial awareness is affected, and sometimes she falls over, as she puts it, “like an old woman”.
She doesn’t like to admit it, but her short-term memory is deteriorating, although she fights against this by writing everything down. She tires easily as a result of her cocktail of drugs and the sheer effort of reading. Her face cannot open to a full smile on its left side.
Life has been extended by radiation therapy to control the growth of the tumour – although it also left her with a scorched scalp and a wisp of hair where once was a luscious dark mane. She wears a hat or hairpiece to disguise the damage.
Through luck and contacts, she was able to get a supply of a chemotherapy drug normally restricted to sufferers of more aggressive brain cancer. Temozolomide isn’t funded in New Zealand for grade 2 tumours like Seales’, so at a cost of about $700 a week (which included the pharmacist’s healthy markup) she and Matt paid for the first month’s supply. Her mother then tracked down an old friend who worked in the pharmaceutical industry in the hope of finding a cheaper pharmacist. The contact connected her with an executive at Merck, which had lost the Pharmac tender for Temozolomide and had a store of the expensive drug sitting in its warehouse going to waste. The company agreed on compassionate grounds to let Seales and several other patients have it for free.
Temozolomide kept the tumour in check for a year or so. But Seales’ oncologist, David Hamilton, says it seems to be growing again. She was recently put on a different chemo regimen, Procarbazine and Lomustine. “With subsequent rounds of chemo, there is a diminishing return and increased risk,” he says. If the current medication doesn’t produce an improvement, “there is no automatic next step”.
Nor is there any certainty as to how the illness will progress. “It depends on which tentacle goes furthest fastest,” Seales explains pragmatically. If the tumour compromises a vital bodily function, death could come suddenly. More likely, says Hamilton, is that the tumour will inexorably grow, resulting in advancing paralysis on her left side.
“No one has told me I will lose my mental faculties, but I have inferred that it must be so,” says Seales.
She may still have years to live, or she may not.
As University of Otago medical law expert Colin Gavaghan explains, Seales and other New Zealanders in her position are not entirely without options. If her suffering becomes unbearable she could, for instance, follow the example of Wellington woman Margaret Page, who had been debilitated for years by a brain haemorrhage and in 2010 starved herself to death over 16 days. The law sanctions such a choice.
Seales could, while she is still fully able, prepare an advance directive, advising her carers that if she reaches a self-determined threshold of pain and disability, she does not want to be given food or fluids, or directing that she is not to be resuscitated if she becomes unconscious. New Zealand law holds that her carers would be obliged to follow her wishes.
She could refuse all further treatment. The Bill of Rights Act enshrines her right to do so, provided she is competent to make that decision and regardless of the opinion of her physicians or family.
Her doctors could elect to withdraw treatment – even if she and her family wanted it to be continued – if they thought that continuation would be futile and provided the decision was in line with prevailing medical standards. Such a decision would be lawful, even if further treatment might prolong life for a few more days or weeks.
Or if the level of her pain was such that her doctor needed to administer so much morphine to relieve it that it also had the effect of hastening her death, the physician would be safe in the eyes of the law – because the intent was to ease suffering, not to cause death.
But the choice that Seales believes ought to be available as “a fundamental human right” – assistance to end her life at a time that allows her to say goodbye to her loving family while she remains fully conscious – is unavailable.
That option rests on the far side of a blurry legal line that determines it is lawful for a doctor to switch off a patient’s life support or withhold treatment that is deemed futile, but unlawful to administer a lethal dose of barbiturates to a competent adult who is dying painfully from a terminal illness and who has repeatedly asked for help to die.
“I’m not sure that I would actually exercise the right to die if I had it, but I should at least have the choice,” says Seales. She argues it should be enshrined in carefully crafted law that sets clear boundaries as to who could qualify, and provides for careful review and monitoring. This level of transparency is arguably absent from the current regime, in which some patients who are desperate to die resort to lonely and violent suicide while they are still able to or are secretly helped by relatives willing to risk imprisonment for their actions.
Street’s End of Life Choice Bill would have allowed certain New Zealand residents aged 18 or over to have assistance to die: those with a terminal disease or other condition likely to end their life within 12 months, or with an irreversible physical or mental condition that they say renders their life unbearable. The applicant would have to be mentally competent, as attested by two doctors, and the request for assistance to die would have to be made twice, in writing, at least seven days apart. Applicants would have to attest they hadn’t been coerced into the decision, and be told of the options available, including palliative care. Doctors would be free to decline a request to help someone to die.
The bill also included provision for registered “end of life directives” in which patients could request medically assisted death in the event that they became mentally incompetent to ask for it. The directive would have to be refreshed every five years.
Seales’ decision to add her voice to the case for reform of the way we deal with death follows a number of high-profile stories that have galvanised the international debate about assisted dying. Californian woman Brittany Maynard, who had been given six months to live after being diagnosed with brain cancer, became the poster girl for the death with dignity campaign last year. She and her husband moved to Oregon to take advantage of the state’s assisted suicide law, which allows doctors to prescribe medication to enable terminally ill people to kill themselves, provided they have less than six months to live, have made two requests, are competent and have the diagnosis backed up by a second medical opinion.
Maynard, who was suffering from increasingly severe seizures, captured international attention by broadcasting her journey to death through social and mainstream media. She took her prescribed fatal dose on November 1, just short of her 30th birthday.
In late 2013, Dr Donald Low, a Canadian infectious diseases expert who was a prominent voice of calm during Toronto’s SARS epidemic in 2003, recorded a video a few days before he died of a brain tumour in which he argued that Canadian law ought to give him the right to “drink a [lethal] cocktail” and “fall asleep” surrounded by family. “Palliative care has a major and valuable role,” he said, “but it can’t take away the symptoms I am going to have.”
To those who objected to his stance, Low said: “I wish they could live in my body for 24 hours … Why make people suffer for no reason when there is an alternative?” The video was posted online after he died.
Closer to home, Christchurch astrocytoma sufferer Philip Broderick went public following Maynard’s death to argue that he also ought to have the right to die on his own terms. “Maybe I want to die as myself before surgeries and radiation change my brain so much that I am no longer who I was,” he told the Press.
Internationally, a succession of gruelling court cases have focused attention on the plight of those with debilitating or terminal illnesses who want to end their lives, but are physically unable to commit suicide and can’t ask their family or doctors to help them because of the risk of criminal prosecution.
The 1993 case of Canadian motor neurone disease sufferer Sue Rodriguez still resonates, says Alberta-based John Warren, president of Dying with Dignity. “She said, ‘If I don’t own my body, who does?’” Rodriguez took her plea for assisted suicide to Canada’s Supreme Court and lost.
More recently, the landmark case of Carter vs Attorney General has been heard in the Supreme Court of Canada. The plaintiffs include Lee Carter, who acceded to her terminally ill mother’s request to take her to Switzerland’s Dignitas clinic to die. The case asks the court to decriminalise medically assisted dying and has been funded by the British Columbia Civil Liberties Association.
In the first instance the Supreme Court of British Columbia upheld the plaintiffs’ case, but the decision was overturned on appeal from the federal government. The Supreme Court of Canada is expected to issue its decision on the latest hearing in a few months.
In the UK, former engineer Tony Nicklinson, who was paralysed from the neck down after a stroke and unable to communicate except by blinking, asked the High Court to allow doctors to end a life that he said was “miserable, demeaning and not worth living”.
The judges refused, issuing a decision in 2012 that was applauded by the British Medical Association and anti-euthanasia groups. Nicklinson died a few days later.
But the impact of his case has been far-reaching. Last July, former Archbishop of Canterbury Lord George Carey came out in support of a bill currently before the House of Lords that would – like the Oregon law – allow doctors to prescribe a lethal dose to terminally ill patients who are deemed mentally competent to make the decision and who are likely to have less than six months to live.
The Anglican Church remains staunchly opposed to the bill, with current Archbishop Justin Welby calling it a “sword of Damocles” that would “hang over the head of every vulnerable, terminally ill person in the country”. But Carey said he had been moved by Nicklinson’s story and that his previous opposition to assisted dying had been driven by doctrine rather than compassion. Advances in modern medicine were central to his thinking about the issue. “While drugs might be able to hasten the end more quickly and painlessly, sophisticated medical science also offers people the chance to be kept alive far beyond anything that would have been possible only a few years ago. Yet our laws have not caught up with the science.”
Legalising assisted dying would bring mercy killing out of the “legal twilight”, where doctors, relatives and carers “privately” administer lethal doses to suffering patients, said Carey.
Archbishop Desmond Tutu also joined the debate in mid-2014, backing the right of terminally ill people to be helped to end their lives. He said he revered the sanctity of life – “but not at any cost”.
In the meantime, the level of legal tolerance for those who help terminally ill loved ones to die has increased in the UK. In 2010 the Director of Public Prosecutions issued guidelines saying that if a person acted “wholly out of compassion” to help another to commit suicide, and if the dying person had voluntarily and clearly made up his or her mind to die, it was unlikely that prosecution would follow. Recently that leniency was extended to doctors and nurses who help severely disabled or terminally ill people to take their own lives.
New Zealand penalties
Jack Havill, president of New Zealand’s Voluntary Euthanasia Society, says the courts in this country are also taking an increasingly soft approach towards people alleged to have helped a family member to die. In 2004, Lesley Martin was sentenced to 15 months’ jail for the attempted murder of her cancer-ridden mother, Joy. Since then, Sean Davison, who gave an overdose of morphine to his dying mother, Pat – who by then had starved herself for 31 days – was sentenced in 2011 to five months’ home detention for “counselling and procuring” his mother’s suicide attempt.
More recently still, Auckland man Evans Mott was discharged without conviction after pleading guilty to aiding and abetting the suicide of his wife, Rosie, who was suffering an aggressive form of multiple sclerosis.
Havill, a former intensive care specialist, is a Baptist who says his faith is not inconsistent with his belief that patients who are suffering unbearably ought to be able to get assistance to die. He says it already happens, regardless of the law. “My wife has worked as a nurse and used to care for people who were end-stage, and friends of hers and mine have talked of it from time to time happening. It’s just people being compassionate. The patient is begging them to do something. But nothing is said officially.”
A study published in the New Zealand Medical Journal in 2004 supports the anecdotal view that assisted dying occurs in the legal shadows. Researchers asked GPs about the last death they had attended, and of the 1255 who responded to the survey, 39 (5.6%) attributed death to a drug that had been prescribed, supplied or administered for that purpose.
“Legal or not, physician-assisted death is an international reality, and New Zealand is no exception, with such actions occurring in an apparently palliative-rich environment,” concluded the researchers. “Moreover, the results of this survey indicate that physician-assisted death is at times occurring without consultation with the patient.”
The New Zealand Medical Association, Hospice New Zealand and the Australian and New Zealand Society of Palliative Medicine all have official positions in opposition to euthanasia and assisted suicide.
“Right to die” vs “duty to die”
What of the fears expressed by opponents of reform that by changing the law to ease death for those who want it, the role and viability of palliative care would be undermined? What of the risk, cited by the likes of the Catholic Church and many advocates of the disabled, that vulnerable people would be coerced to die and that the “right to die” would insidiously become a “duty to die”?
By accepting that some suicides are okay, would society be sending a mixed message regarding the tragedy of youth suicide and creating a confusing double standard, as the New Zealand Catholic Bioethics Centre argues?
Would assisted dying offer an easy way out for a country with a stretched health budget and an ageing population? Would it cheapen life and send us down a slippery slope of abuse and decaying ethics?
Such questions were central to the work of a cross-party select committee on Dying with Dignity, established by Quebec’s National Assembly to investigate the case for reform. One of the triggers for the inquiry was a major discussion paper, published by the Collège des Médecins du Québec, arguing that under exceptional circumstances, euthanasia could be a “final step in the continuum of appropriate end of life care”. Opinion polls also showed that 70-80% of Quebeckers were in favour of euthanasia.
As well as hearing from thousands of Quebeckers, the committee travelled to the Netherlands and Belgium to find out what had happened in two of the jurisdictions with the longest experience of legal assisted dying.
Among the conclusions of the committee’s unanimous 2012 report were that palliative care, while the “best answer” for end of life suffering, can’t relieve all symptoms and can lead to a “pharmacological spiral” that prevents patients “having the death they would have wanted”. It said the line between illegal euthanasia and lawful palliative sedation – in which the patient is rendered unconscious in order to relieve pain and severe agitation, and from which he or she never wakes up – is “very murky indeed”.
It also found that despite the availability of assistance to die, the Netherlands and Belgium offered some of the best palliative care in the world. “The social consensus was to openly accept [assisted dying] as long as palliative care was accessible to more patients.”
The committee also found no sign of abuse in the Netherlands (where assisted dying is available from age 12) or Belgium (which extended its assisted dying laws to children of all ages in 2014). Nor did the committee find any increase in suicide rates.
“In fact, physicians and institutions that do not practise euthanasia, and even those opposed to it, told us the slippery slope has not materialised.” The Royal Society of Canada, which conducted a wide-ranging investigation into end of life decision-making in 2011, reached the same conclusion.
Between 0.7% and 2% of deaths are as a result of assisted dying in European jurisdictions that allow it, and people who choose it are estimated to shorten their life by an average of 10 days, the Quebec committee reported. Eighty per cent of those who ask for help to die are cancer patients.
It concluded that even if only a small number of people opted for assisted dying, the fact that the choice was available to them if their suffering became unbearable would bring “tremendous comfort … somewhat like an ‘emergency exit’”.
The Dying with Dignity report became the foundation for a new law that legalises assisted dying as an integral part of end-of-life care. It was passed by a large majority in the National Assembly last June and comes into force late this year – although Canada’s federal government has threatened to challenge it.
Public in support
Back in Wellington, Lecretia Seales argues it’s time for New Zealand to catch up. Like many advocates of reform, she says public opinion is well ahead of the politicians on this issue. An extensive Horizon poll in 2012 found 63% supported a law change to allow mentally competent adults to receive medical assistance to die if they have a terminal illness or an irreversible physical or mental condition that renders their life unbearable. Sixty-five per cent said they knew or had known someone in that position.
Only 12% were opposed to reform, with 25% neutral or unsure. One of the cohorts to express the strongest support for change was National Party voters, with 70% in favour.
Maryan Street says during the time that she was promoting the End of Life Choice Bill, people “came out in droves” to public halls up and down the country to talk about the issue. “People get it. Baby boomers are seeing their parents die badly and they are thinking about their own mortality … They are accustomed to being autonomous and can’t bear that decisions over their parents’ lives are being made by people other than their parents.”
With Andrew Little having snuffed out any chance of the bill reaching the floor of the House any time soon, Seales believes her own employer, with its broad mandate to research and review the law, is best placed to advance the public debate.
Law Commission president Sir Grant Hammond says the agency has the statutory authority to investigate legal issues without having to wait for instruction from the Government, although in recent years it has focused its resources on areas of interest to the administration of the day. Given the strong public interest in the assisted dying issue, he suggests it may be better suited to a royal commission, which could undertake the widespread consultation necessary. “Of course, there is an argument that any administration would shy away from the topic because it is so controversial, and that therefore there is a role for the Law Commission.”
Despite her decision to devote some of her remaining reserves of energy to the public debate about how we die, Seales is well aware that the choice she seeks will almost certainly not be lawful in her lifetime. She knows better than most how slowly the wheels of reform turn, particularly on such a sensitive issue.
The best she can hope for is that her darkest fears are not realised, and that she does not live out her final weeks and days in the state she has seen dying relatives in – “drugged to the eyeballs, virtually unconscious, breathing and that’s about all … I really want to be able to say goodbye well.”
*Lecretia Seales' views on assisted dying are her own, not those of the Law Commission.
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