Lecretia Seales, 1973-2015

by Rebecca Macfie / 11 June, 2015
The young lawyer has left a powerful legacy of evidence.
LecretiaSeales
Photo/Hagen Hopkins


Lecretia Seales did not get the choice she sought. But from her momentous High Court action, she has bequeathed to New Zealand a wide body of evidence that does much to defeat the myths about assisted dying and provides a solid foundation for reasoned debate.

In asking Justice David Collins to declare it lawful for her doctor to help her die, the 42-year-old lawyer faced formidable adversaries: the Crown, the palliative care sector, the Catholic Church, the Salvation Army, Family First and others besides.

Familiar arguments were heard in opposition: that palliative care can relieve all suffering in dying patients; that if Seales’ plea was granted it would undermine the provision of palliative care; that it would damage the relationship between doctor and patient; that it would put the old, disabled and vulnerable at risk of coercion.

Justice Collins ruled that the law, as written, prevented him from granting Seales either of the declarations that she sought. If her GP helped her die, the doctor would be at risk of prosecution under the Crimes Act; and Seales’ rights and freedoms under the Bill of Rights Act were not breached by the current ban on assisted dying, he concluded.

But in reaching his decision, he made ground-breaking findings on evidence put before him by international and local experts – findings that will help anchor the debate about assisted dying in the facts, rather than in speculation and assertion.

First, he concluded, “palliative care cannot necessarily provide relief from suffering in all cases”. Among the affidavit evidence on this point was that of Dr Rajesh Munglani, a UK pain consultant who treats many hospice patients in severe distress at the most “challenging end of the spectrum”. Although the availability of pain relief medication has dramatically improved palliative care in the past 20 years, he continues to see cases where nothing can be done to relieve suffering.

“At least twice a year, I see cases where, despite the use of all the appropriate interventions and therapies available in all the disciplines described, patients experience pain and distress.” Often such patients are “over-sedated to the point of confusion … a number cannot be helped without heavy sedation. Particularly where dying does not appear imminent, the prospect of long-term sedation to the point of unconsciousness is distressing and undesirable for the patient and family.

“In my opinion, the symptoms (including pain) and distress experienced by some end-of-life patients are beyond the realms of medicine,” said Munglani. “However small the number of cases, in my opinion, watching someone endure unbearable suffering diminishes all humanity.”

In a recent journal article on pain and suffering in cancer patients – attached to his affidavit – he told of a cancer patient with severe rectal pain that could not be relieved except by a treatment that would leave him doubly incontinent and possibly permanently paralysed. The patient started talking about going to Switzerland, where aid in dying is legal.

Munglani mentioned the situation to a colleague who was opposed to assisted dying; the colleague said the patient “should be made to have this treatment even if he did not want to”. This raises the question: “What is the purpose of the medical profession – the simple, mere prolongation of existence or, in fact, the maintenance of quality of life? What about the autonomy of the patient in such a circumstance, to choose what treatment he should have rather than be subjected to?”

Included in Munglani’s evidence was correspondence with Cardiff University professor of palliative care and leading UK anti-euthanasia campaigner Baroness Ilora Finlay. Finlay gave evidence for the Crown in opposition to Seales’ case, arguing that doctors would see assisted dying as a “solution” and that unresponsive pain was often the result of a patient’s undisclosed life trauma.

Finlay wrote to Munglani last year after he was quoted in the House of Lords as saying some patients experienced excruciating pain that could not be relieved. She said that after having spent 25 years in palliative care, she did not share this experience.

Before responding to Finlay, Munglani sought comment from other pain specialists. Among the responses, one said unrelieved pain happened “on a daily basis” in hospices and hospitals, but this was hidden behind a “mantra” that the patient didn’t suffer. Munglani told Finlay that he “did not find a single pain consultant … who agreed with you that despite the fact the consultants had opinions which lay on both sides of the assisted-dying debate”.

He said the published literature from pain and palliative care societies confirmed that severe uncontrolled pain occurs for a small number of patients, for whom it “dominates their whole existence”. An American Cancer Society paper said 90% of patients could have their pain relieved with “optimal treatment” – leaving 10% whose pain could not be controlled.

A key Crown witness, Irish palliative care expert Dr Tony O’Brien, agreed some patients have distress that’s “not responsive to analgesic drugs or interventions”. However, skilled palliative care aims to help the person “find meaning and purpose in life’s suffering”.

DRIVEN TO AN EARLY DEATH


CoverLecretiaA second significant conclusion drawn by Justice Collins was that Seales had been at risk of premature death because of the unavailability of assisted dying. The evidence before him on this topic was gruelling, including Seales’ own affidavit, which revealed she had considered methods of ending her life if her doctor was barred from helping her, including poisoning by carbon monoxide. She wrote of her fear of having to act alone and in secret to avoid implicating her loved ones. She worried that if she waited too long to make a decision, the only option available to free herself from suffering would be to refuse food and water until she died.

Justice Collins accepted the evidence from medical witnesses that some people in Seales’ position killed themselves prematurely while still physically able to – particularly those who were “successful and driven”. According to evidence from Auckland palliative care psychologist Richard Owens, such patients were not depressed, but found the effects of their illness “particularly intolerable because the loss of autonomy and inability to manage their lives is directly contrary to the things they value”.

Tasmanian palliative care and pain consultant Michael Ashby told the court that 10-20% of hospice patients expressed a wish for the dying process to be accelerated at some stage, with 5% making “clear and sustained” requests. He told of his experience with two patients with advanced malignant disease – neither of whom had depression – who tried to commit suicide by overdosing while they were still able to do so without the knowledge or assistance of others. Both survived the attempt and were found by family members, and in both cases the decision was made not to revive them, in accordance with their wishes.

Dr Eric Kress, a hospice medical director and family GP from Montana, described the very different deaths of two patients, one of whom had access to aid in dying. The first, a wealthy self-made man, was dying of amyotrophic lateral sclerosis and asked Kress for help to die soon after a 2009 landmark court case that made assisted dying legal in Montana. Kress felt unprepared to write a prescription under the new law and declined. The man killed himself a month later, using stockpiled drugs that he put down his tube feeder.

The second patient was dying of oesophageal cancer and came to Kress through his hospice. He requested aid-in-dying medication and Kress prescribed it for him. “He immediately gained great peace of mind,” said Kress. He took the drugs when the pain became uncontrollable, and Kress was with him when he died. “He opened a bottle of Guinness and asked that we all join him in a toast.”

Kress said that in the six years since assisted dying was made lawful in Montana he has written 10 prescriptions for dying patients. All were “of sound mind, none was depressed and not one of them was ‘suicidal’”.

Doctors working in jurisdictions that allow aid in dying gave evidence that patients’ lives can be extended when they know they can be helped to die if their situation becomes unbearable. A study that reviewed the files of 34 patients who sought aid in dying in the first year of Oregon’s Death with Dignity Act showed that of the 10 who took the lethal medication, six were sufficiently certain of killing themselves by other means that the authors considered them to be cases of averted suicide. They also identified two cases of “averted homicide” – cases where others would have been at risk of prosecution for helping them die.

SEALES' WISH WAS "RATIONAL"


LecretiaLawIn a third key finding on the evidence, Justice Collins said Seales was not vulnerable and had not been coerced to seek assistance to die and her wish to have aid in dying was “a rational and intellectually rigorous response to her circumstances”.

Although he made no generalised findings on whether assisted dying would put vulnerable people at risk, research put before the court on the experience in Oregon and the Netherlands, where assisted dying is also legal, showed no evidence of heightened risk.

Oregon psychiatrist Linda Ganzini was part of an international cross-disciplinary research project that looked at this issue; the results were published in the Journal of Medical Ethics. The study looked at whether physician-assisted dying put at risk people from 10 groups considered vulnerable, including the poor, racial and ethnic minorities, and people with non-terminal disabilities, psychiatric illnesses, Aids and no health insurance. “We concluded that the data does not support concerns that death in this way would be practised more frequently on persons who are considered vulnerable in terms of demography or illness, excepting the possibility of persons with Aids,” Ganzini said in her affidavit. As to the claim that the elderly would be at risk of coercion, as argued by John Kleinsman of the Catholic Bioethics Centre, Ganzini said the data showed that proportionately fewer people over 65 chose assisted dying in Oregon than younger people.

The Oregon evidence showed that the main reasons for choosing aid in dying were loss of independence, wanting to control the time and manner of death and to die at home, the prospect of worsening pain or quality of life and the inability to care for themselves, said Ganzini. Other less important reasons were having witnessed others die intolerable deaths, not wishing to be a burden, loss of dignity and fear of mental confusion. Her research also showed that doctors were “significantly less likely” to write a prescription for assisted dying for patients who perceived themselves to be a burden.

As to the argument that assisted dying would undermine hospice care – advanced by Crown witness and Wellington palliative care specialist Dr Sinead Donnelly – Ganzini said 93% of those who took drugs under Oregon’s assisted-dying law were enrolled in a hospice. Published research showed doctors’ knowledge of hospice care and willingness to refer patients to a hospice improved in the first five years of legalised assisted dying in Oregon. The first doctor in the state to write a script for assisted dying, Peter Reagan, wrote in an affidavit that palliative care had improved since assisted dying’s legalisation, and aid in dying was “an important addition to palliative care for the relatively small number of patients who wanted it”.

IN POLITICIANS' COURT


Despite the findings on Seales’ evidence, Justice Collins said he would be trespassing on the role of Parliament if he interpreted the law to allow assisted dying. And so the baton has been passed back to the politicians, who have three times in the past two decades rebuffed efforts to reform the law.

Prime Minister John Key is sympathetic to the assisted-dying cause, but shows no sign of taking the leadership role urged on him by Seales’ husband, Matt Vickers, in a statement delivered on the day his wife died of brain cancer. Key says the Government will not put a bill before Parliament. Instead, it will be up to individual MPs to promote private members’ bills, which may or may not be drawn from the ballot.

Former prime minister and retired Law Commission chairman Sir Geoffrey Palmer – a close friend and former colleague of Seales – says this is a lottery, and promoters of members’ bills don’t have access to the drafting services of parliamentary counsel that would be needed on such a complex subject. He says there should be a Government bill, with MPs having a conscience vote.

Palmer has been approached by several MPs “on all sides of the house” wanting to promote bills, and he says he is happy to help with drafting. “But you have to have some coherence … There really are serious difficulties if the Government doesn’t lend its authority and weight to having this done properly. There is a need for this to be dispassionately and analytically treated by people who know what they are doing … This is not a place for popular prejudices and opinion that is uninformed. It’s a place for rigorous analysis.”

He says the Government should ask the Law Commission to produce an issues paper looking at how overseas jurisdictions work and what would be best for New Zealand, followed by the drafting of a bill. Alternatively, the Attorney-General could direct parliamentary counsel to work with MPs who want to promote a private member’s bill.

“But it looks to me as if the Government’s approach to this is not to assist so that it actually won’t go anywhere … I think there is a real danger that this is going to go wrong, because the process is not clear and no one is responsible for it.”

As reported in the Listener in April, Labour leader Andrew Little has backed his MP Iain Lees-Galloway to use an upcoming petition from the Voluntary Euthanasia Society as the trigger to seek a select committee inquiry, which would be able to call evidence and hear submissions. But Lees-Galloway says it can’t be assumed there will be enough political support for such an inquiry to proceed.

“There is an opportunity here for Parliament to show leadership … What is absolutely clear is that the public wants Parliament to continue to debate this issue properly.”

For more on Lecretia Seales’ story and assisted dying, see “Dying wishes”, January 17 issue, tinyurl.com/NZLchoice; “Live & let die”, March 21 issue, tinyurl.com/NZLassisted; “The rights choice”, April 4 issue, tinyurl.com/NZLrights; and “Last rights”, June 6 issue, tinyurl.com/NZLfinal.

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