The law needs to be changed to allow Lecretia Seales’ wish to determine when she died. But we must take care that such a measure would not be a slippery slope toward some ambiguous twilight zone, says Sir Geoffrey Palmer

Lecretia Seales died of a cancerous brain tumour in Wellington on 3 June 2015. She was 42.

Employed by the Law Commission as a senior legal and policy adviser for eight years, Lecretia had an abiding interest and competence in the field of law reform. She lived in Karori with her devoted husband Matt Vickers and their Abyssinian cat Ferdinand. I feel privileged to have known Lecretia well, both when I was President of the Law Commission and earlier when she worked with me at the law firm Chen, Palmer and Partners, public law specialists. Lecretia was a lawyer of high quality and she had a passion for the law. She hailed from Tauranga where her parents Shirley and Larry still live. She loved cooking and dancing. She had the gifts of friendship and empathy. I have met few people as determined and strong as she was. In the case she brought in the High Court concerning her impending death one witness described her personality as “young, bright, independent, perfectionist”. I concur.

Lecretia was diagnosed with brain cancer in 2011. Earlier she began suffering from severe headaches and her general practitioner referred her to a neurologist. An MRI scan, some surgery and pathology tests led to a diagnosis of a serious and cancerous brain tumour, with tentacles reaching all through her brain. She underwent surgery of a most grave character, followed by six weeks of intensive radiation therapy that left her scalp very burnt. She continued to work and live as full a life as she could, despite tiring more easily and suffering from deteriorating eyesight. Lecretia was determined to live both her personal and professional lives to the full in what time she had left. And she did so with gusto. She continued working at the Law Commission until a very late stage. She travelled overseas to dance the tango in Buenos Aires. She went to San Francisco and Bermuda and then to Morocco in October 2014, by which time her mobility was seriously impaired. Chemotherapy worked well until August 2014, but bad symptoms set in and Lecretia’s life became increasingly difficult. She had to have a walking stick. She could not drive. She needed help to stand up. Her left foot became useless. She became seriously impaired and could no longer dress herself without help, she experienced increased pain.

There could be no certainty how her illness would progress. It was clear to her and all her whānau that death was inevitable and time was running out. She wanted the option of determining when she died, if she began to experience enduring suffering that was intolerable. As she told the court, “If my death is manageable I should be the one to manage it.” The prospect of a slow, unpleasant, painful and undignified death weighed heavily on her mind. She had contemplated whether she could take her own life unaided, but this was not a choice she wanted to make. And were she to take such action she would have to take it earlier than if a doctor were available to assist. She felt deprived of choices. Her evidence was: “I want to live as long as I can but I want to have a voice in my death and be able to say ‘enough’.”

Lecretia took a bold and courageous step. She decided to use her personal situation as an emblem of why New Zealand law should be changed. For a person as private as she was this must have been a difficult decision. It was not a decision she took lightly. She researched the law and discussed it in depth with a number of people, of whom I was one. She studied the very recent right to physician assisted dying established in the ground breaking decision of the Supreme Court of Canada on February 6, 2015. There, a person in a similar position to Lecretia won her case. It was held the Canadian Criminal code infringed the Canadian Charter of Rights in a situation like Lecretia’s, so that a blanket prohibition on physician assisted dying was constitutionally invalid. The New Zealand Bill of Rights Act 1990 is similar in many respects to the Canadian Charter under which the Canadian case succeeded. The New Zealand Bill of Rights Act borrowed heavily from the Canadian Charter. It should be noted that Canada also has a criminal code similar in its historical derivation to New Zealand’s and the two systems remain in touch with one another. Lecretia reached the view that there was a fighting chance her case could succeed in the New Zealand courts. Even if she did not prevail, Lecretia reasoned, the evidence would demonstrate why New Zealand law should be changed. Her decision to use litigation as a law reform project was typical of the dedication she had to a legal system that is up to date, fair and just.

Lecretia sought declarations from the court that in her particular circumstances her doctor could lawfully accede to her requests for physician-assisted dying. This was necessary for the doctor to avoid the risk of prosecution for the crimes of murder or manslaughter in administering aid in dying. It was also necessary to secure a declaration that the doctor would not be at risk of prosecution for assisting Lecretia to commit suicide. So it was the case was mounted in front of Justice Collins in the High Court at Wellington, led by Andrew Butler, with 51 affidavits from 36 witnesses being filed in the case. The application was opposed by the Crown and other interests joined.

Lecretia had the judge’s decision read to her before she died on 3 June, and the judgment was announced publicly the day after her death. The last day of the legal argument was 27 May, so the judge produced his useful and detailed judgment in a remarkably short time. Lecretia’s case failed, but the case and the evidence contributed powerfully to ensuring that the adequacy of New Zealand law on this subject would be examined. That examination is now occurring in front of a Parliamentary Select Committee. The Committee has received a greater quantity of submissions than any Select Committee has ever previously received in New Zealand.

The question I ask on behalf of Lecretia is whether a legislative case can be made out to change the law so that it is lawful to allow the termination of life by a doctor at the request of the patient where there is compelling reason to do so. I am exploring only the proposition that life can be ended intentionally in order to relieve pain and suffering and what checks and balances may be required to prevent abuse. That is the law reform issue that flows from Lecretia’s case. I am not here concerned to argue the case for a general right to die. In matters of this sort it is better to proceed with careful, small steps. The sanctity of life is a big principle and it has so been for a long time.

The evidence in Lecretia’s case showed that she suffered from a grievous and terminal illness. Further treatments could not cure her condition. The growth of the tumour would ultimately prove fatal and it did. Great physical and psychological suffering resulted from Lecretia’s illness. Pain management for patients with brain tumours can be especially appalling, the evidence showed. Little could be done to manage it except by way of pain relief that may be ineffective and high steroid doses cause severe side-effects: depression, anxiety, muscle deterioration, agitation, increased blood pressure, hunger, ulcers and bleeding, weight gain and sleep disturbance. Lecretia experienced most of those, including a significant weight gain. Morphine was used to relieve her pain.

As the tumour diffused through her system Lecretia suffered severe pain and other effects including loss of mental acuity, inability to move, talk or swallow and she required palliative sedation. She was by the time that case was argued in a wheel chair, she suffered from visual impairments, lack of mobility, loss of independence, fatigue, incontinence and great difficulty in communicating. Pain in the neck and head is particularly difficult to control.

On top of all this was the psychological suffering – anxiety, hopelessness, frustration, loss of qualities that made her who she was and the sight of her loved ones being distressed at her plight. This was particularly serious for someone like her, who valued her self-sufficiency and autonomy and was a driven person. She felt overwhelming anxiety about the progression of her illness and the suffering that she may have to face before the end. That anxiety significantly impinged upon the enjoyment of the time she had left to be with her friends and family. She considered ending her own life before she reached the stage of intolerable suffering while she was still physically capable of doing so. This thought produced extreme anxiety in her. She was worried about implicating her husband or parents in her death and she worried about not being able to say a proper goodbye.

She told the court in her first affidavit:

It seems incomprehensible to me that I can exercise a choice to end my life when I am able, and still have quality of life, but can’ t get any help to do so at a later point when my life no longer has any quality for me. I want to live as long as I can but I want to have a voice in my death and be able to say “enough”.

Her argument was that if she was provided with a choice of an assisted death that it would improve the quality of her palliative care, it would alleviate her non-physical suffering and remove the need to contemplate taking her own life prematurely. It would return to her some of her valued autonomy. The evidence in front of the court shows a number of instances where people suicided early in order to avoid becoming incapable of doing so. The central values to be advanced by permitting such an action reside in the principles of human dignity, autonomy and self-determination.

In simple terms the issues can be put this way: “It is my life, no-one else’s. I am free to end it when I am dying and the pain and suffering has become so intense that in accord with my own free will I want to end it all. Where I am suffering from a terminal illness, I am mentally competent and I fear a painful and undignified end I should be able to receive a prescription that enables me to exit gracefully so relieving my acute anxiety about the coming ordeal?” This makes clear the point of view Lecretia had. She was not wanting to commit suicide in the sense that most people who accomplish it do. She wanted to avoid what she regarded as a worse fate.

That seems a reasonable thing for the law to allow if it can be done without danger to others and with sufficient safeguards against abuse. What is the public purpose to be achieved from prolonging such a life? There comes a point when the life is simply not worth living. For the state and its law to place obstacles in the way of such a person experiencing intolerable suffering appears to the person to be a cruel punishment imposed by the law. But for what purpose? The values behind the law can relatively easily be protected and preserved. The bright line general rule in our law ought to admit of exceptions in such circumstances such as Lecretia’s. Otherwise the law is disproportionate in its consequences and simply too wide.

If the argument I am advancing is accepted what then is the best means of designing a workable scheme? There do exist some difficulties in drawing the line in the correct place. There are issues of how much medical evidence there needs to be and from whom. There are issues about sick people being pressured by relatives into taking the step for reasons that relate to the relatives, not to the person who is suffering. My own view is that it is desirable to proceed with caution in this area and not go further than the circumstances warrant. I am aware of the wider arguments concerning euthanasia generally. In many circumstances they may be persuasive. But here I am confining myself to the situation in which Lecretia found herself. The law needs to be changed to allow her wish to be granted. This is not in my view a step that lessens the sanctity to be accorded to life. Death is inevitable. By making this suggested exception to the general principle we would be respecting life. And such a measure would not be a slippery slope toward some ambiguous twilight zone.

There has been much discussion in New Zealand of the measures adopted overseas, particularly in Belgium, Canada, Colombia, California, Luxembourg, Montana, New Mexico, Oregon, the Netherlands, Switzerland and Washington. There is much to be learned from these jurisdictions to be sure. But we in New Zealand are in our own political space with our own culture. The risk is that a Bill to be introduced to the parliament could easily end up being overly complex, involved and bureaucratic, as so much of the law has sadly become. To prevent abuse the safeguards need to be real, but at the same time the law needs to be as simple and clear as is practically possible.

The literature, and no doubt the 21,533 submissions to the New Zealand Select Committee, warn that many safeguards must be required if the law is to be changed. Among the issues that require such safeguards are such things as the irrevocable nature of ending life, the possibility of errors, the vulnerability of people who are suffering who may be induced to end their lives at the behest of others and the public health issues relating to suicide in the community generally. This last is an ongoing and substantial policy issue.

The proposal I put forward is not found in any of the overseas laws that I have examined. But in the New Zealand context it could be useful to involve the Family Court as a means of ensuring that the standards of the new law are met and the public can be assured they have been met. The elements of a simple and clear policy that arrives at an equitable accommodation of all the interests could have the following elements.

The existing criminal law would remain, although the penalty in section 179 of the Crimes Act, which addresses aiding and abetting suicide, is excessive and should be halved.

An exception should be enacted in the Crimes Act to allow a person to be lawfully provided with medical assistance in dying where:

• the person is of at least 18 years of age and capable of making decisions;
• the person is a permanent resident of New Zealand;
• the person has consented in writing to receive such assistance before two independent witnesses;
• two medical practitioners have certified that the person has a grievous and incurable medical condition;
• the medical condition is causing enduring suffering that is intolerable to the person in his or her circumstances and condition;
• the facts have been reviewed by the Family Court and a Judge has certified that the criteria laid down in the law have been met; and
• there is a medical practitioner prepared to provide the assistance approved by the Court.

I suggest that such a proposal has the advantage of avoiding health professionals having to take responsibility for decisions about whether the person should be permitted to die. Medical people have raised many issues concerning the ethical dilemmas they face in such situations. Making it a judicial decision obviates those difficulties. The evidence in front of Collins J suggested that “doctors would not contemplate taking any steps to shorten a patient’s life.” There was considerable objection from palliative care specialists, although not all the evidence before the judge was in that direction. The approval of the decision to end life should probably not be in the hands of the doctors, whose responsibilities are already heavy enough.

I do observe, however, that in practice they do make decisions now whether to continue treatment. Legislating for medical ethics is not desirable. The decision could be made by a judge examining the papers and conducting a hearing if necessary to see that the requirements of the law had been satisfied. Making such decisions in the Family Court should eliminate the scope for unseemly adversarial contests, since the court is relatively informal and has many facilities for family conferencing.

The judgment of Justice Collins analysed four principles engaged in Lecretia’s case:

• the sanctity of life
• respect for human dignity
• respect for individual autonomy
• protection of the vulnerable.

These are all important considerations that need to be accommodated and it is submitted that they can each be satisfied by an appropriately drawn statute.

The topic at hand engages significant religious, social, moral, philosophical, and humanitarian issues. But the key issue lies in answering the question “what should be the appropriate New Zealand law on the issue?”

I wish the Select Committee well in what is a massive and important inquiry. The effort and resources that it entails should not be wasted. The Committee needs to produce some tangible policy outcome that is configured to the modern world and its conditions. The fundamentals of the existing law have not been re-thought since the reign of George III. We know much more about human suffering and disease than ever we did when the 1893 New Zealand law on this topic was framed in New Zealand. We also know what the limitations of modern medicine are in preventing unnecessary human suffering. Palliative care has serious limitations in some situations. Balancing the factors at play here should not be impossible when the issues are stripped of their undoubted emotional pull.

It should be noted that many of the progressive changes in the overreach of the criminal law in New Zealand were accomplished in the New Zealand parliament by the introduction not of government bills, but of members’ bills. These matters are regarded as among those that MPs should have a conscience vote upon and not follow a party whip. But vagaries of the balloting of members’ bills means that governments are able to steer clear for long periods of time of issues of this type they would rather not confront. On three occasions the issue has been before the House since 1995 by way of members’ bills. The issue needs to be dealt with properly and comprehensively, with the weight of the government’s advisers brought to bear upon the issues, a facility not available to private members nor to Select Committees, unless they are made available by ministers.

As Collins J observed in his careful judgment in the High Court, Lecretia Seales:

…selflessly provided a forum to clarify important aspects of New Zealand law. The complex legal, philosophical, moral and clinical issues can only be addressed by Parliament passing legislation to amend the effect of the Crimes Act.

We await Parliament’s response. The nation’s central democratic institution must not fail to do its job in responding to new developments and keep the law up to date. As the respected legal philosopher Ronald Dworkin wrote in 1993:

The right to choose to eliminate pain and suffering, and to die with dignity at the time and place of our own choosing when we are terminally ill is an integral part of our right to control our own destinies.

Can I remind you that law itself is a human construct, designed to promote the interests of human beings in the world in which they live.

This is an edited and abridged version of “Law and Life: The Lecretia Seales Memorial Lecture”, delivered at the NZ Parliament on August 29 2016 by Rt Hon Sir Geoffrey Palmer QC.

Lecretia’s Choice by Matt Vickers was published this week