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How do we navigate medico-legal questions without a bill of rights?

Frank Brennan |  02 December 2015

Medico-Legal Dinner, Victoria Park Golf Club, Herston, 2 December 2015. Listen on Soundcloud

When my father was sworn in as a Justice of the High Court of Australia almost 35 years ago, he was welcomed by Hartog Berkeley QC, then President of the Australian Bar Association. Berkeley said: 'We offer our congratulations to the Medico-Legal Society which Your Honour and Mrs Brennan founded in 1953 and which, I understand, now has nine members, two associate members and two very junior members'. You may be aware that the Brennan Medico-Legal Society has continued to thrive these last three and a half decades and is now into its fourth generation boasting dozens of members. I am particularly delighted to acknowledge the presence of two of my sisters here this evening: my sister Madeline, the only woman in the new list of Queensland silks for the year, and my sister Anne, one of this State's finest child psychiatrists. Enough years have elapsed for me now to share publicly my favourite medico-legal anecdote from the intimacy of my family. My mother, one of the first women anesthetists in Queensland and the first woman registrar at the Mater Hospital, made the observation of the Australian legal profession when her husband was appointed Chief Justice of Australia: 'The worst thing about the Australian legal profession is that the more your husband is promoted, the more stupid they think you must be.'

The consideration of medico-legal problems in the public square of a pluralistic democratic society keeping pace with profound technological change is often marked by simplistic assertions, precluding considerations of comprehensive world views, whether religious or philosophical. It is now commonplace for doctors to be told to leave their consciences at the door, as their patients are consumers and they are suppliers and of course the market decides. Debates about law and policy are often resolved with simplistic assertions about individual rights and autonomy, with little consideration for the public interest, the common good, and the doctor-patient relationship. Even conscience is said to be a matter for contracting out.

This evening I ask whether there are more compelling ways to resolve medico-legal dilemmas, while conceding a limited role for law in determining the range of acceptable answers. I have a preliminary warning for doctors. You need to know that the Australian legal system is increasingly isolated from other legal systems because Australia does not have a Human Rights Act or bill of rights. All equivalent countries now have such instruments with the result that when the UK Supreme Court, the US Supreme Court or the Canadian Supreme Court come to consider issues such as euthanasia or physician assisted suicide, they do it through the prism of their bill of rights. And it's those courts and not their parliaments which have led or constrained changes to the law relating to euthanasia and physician assisted suicide. The Australian High Court has no such prism available to it, and thus there is less point in the Australians referring to the jurisprudence of other ultimate courts of appeal. Australia is now jurisprudentially, and not just geographically, an island nation continent. Our courts may come to the same answers, but they need to make it up for themselves or else simply leave the matter to parliaments.

Do we not need to accord a higher value to the formed and informed conscience of the individual medical practitioner? Do we not need to maintain a high regard for the common good (including the doctor-patient relationship) and the needs of the vulnerable as we circumscribe the realm of personal liberty especially when considering laws dealing with end of life decisions? One of the outstanding thinkers in bioethics in recent decades is the American Daniel Callahan who was 27 years the president of the Hastings Center. Callahan urges: 'The liberal individualism of much contemporary bio-ethics needs to take seriously [the communitarian] way of thinking. Without it, bioethics risks being pretty empty and leaving everyone else at the mercy of biomedical developments that will have their way with us. It should be the other way around.' As well as being more communitarian in our thinking, we also need to be more subjectivist, taking seriously the notions of suffering and human dignity. The great Eric J Cassell, one time member of the US President's National Bioethics Advisory Commission and Master of the American College of Physicians has been game enough to ask, 'Respect for persons and autonomy is of cardinal importance, but do those words translate into the same actions in relation to everyone? Allowing that sufficient cognitive capacity is present, does autonomy really mean precisely the same thing for the very sick as for the healthy person?' Cassell who is an international expert on doctor-patient communications tells us:

In the absence of an understanding of subjectivity and the knowledge of persons for which it is essential, neither human dignity nor suffering can be fully comprehended as concepts and in their actual presence in sick persons. Objectivity in the absence of subjectivity renders persons one-dimensional and robs medicine of the compassion and human relationships that define it in history and in the care of the individual sick person.

Having been involved in a couple of the national debates on legislation permitting destructive experimentation on human embryos, I was much taken with the observation by Dr Rufus Black, an ethicist with a Uniting Church background, when speaking on the stem cell debate in answer to a question at the proceedings of the Victorian Medico-Legal Society in 2002:

And explicitly as a theologian, in relation to your mention of the Church's position, I think the Church has actually got it wrong and that theologians who think that — and there are a decent number of them — need to be very public about it and those of us who are not so heavily policed by authority need to be prepared to speak about it. I think here that the thinking has just simply not been careful enough around the nature of what is the intention of researchers when they're dealing with these entities and exactly what these entities are.

Though being a Catholic priest and therefore from a more hierarchical, and some would say more authoritarian, church than Dr Black, I think I am only effective in addressing such an august group as yourselves if I speak as one not heavily policed by authority, as one who leaves my religious obedience at the door of the Club if you will.

The lawyers amongst you would presumably agree that before we legislate or before judges develop the common law, there is a need to consider how the new legal rule might apply to all cases, and not just those calling out for rectification. For example, those who support the legalisation of euthanasia usually proceed by quoting cases of mentally competent patients who are not depressed but who are suffering unbearable pain, facing terminal illness. The easiest and most compelling case to consider is the patient whose relatives fully support the proposed euthanasia. There is no suggestion that the relatives are exerting undue influence on the patient for their own self-interested reasons. There are good palliative care facilities available so it is not as if the patient is under duress, feeling that she has no option but death. The patient has a good and trusting relationship with her medical team. Of course, even under existing law and policy, there is every prospect that such a patient will be euthanised or at least given increased doses of pain relief to hasten death. A 1997 study on 'End of life decisions in Australian medical practice' published in the Medical Journal of Australia by Peter Baume and Peter Singer et al found that 'while 30 per cent of all Australian deaths were preceded by an action or omission explicitly intended to end the patient's life, in only 4 per cent was the decision taken in response to an explicit request from the patient.' Any change to the law requires that we consider the case of those suffering Alzheimer's, or those so disabled that they are unable to administer their own lethal potion, or those who are depressed or so pressured by family presence or even family absence.

In striking the necessary balance between individual autonomy and the common good, Lord Sumption put the issue well in the UK Supreme Court:

There is no complete solution to the problem of protecting vulnerable people against an over-ready resort to suicide ... The real question about all of these possibilities is how much risk to the vulnerable are we prepared to accept in this area in order to facilitate suicide for the invulnerable ... There is an important element of social policy and moral value-judgment involved. The relative importance of the right to commit suicide and the right of the vulnerable to be protected from overt or covert pressure to kill themselves is inevitably sensitive to a state's most fundamental collective moral and social values.

You don't necessarily have to be religious to think that doctors should do no harm, that patients are free to forego futile or burdensome treatment, and that palliative care be utilised to relieve pain. Suicide will occur from time to time, but why the need to enact laws conferring medical legitimation and increasing its likelihood? I readily concede that in jurisdictions like the US state of Oregon, to date, they have maintained a bright line between euthanasia and physician assisted suicide — but it's a line which has been dimmed by the Canadian Supreme Court's bright spotlight of autonomy recently illuminated in their 2015 Carter decision. It's a line which would be extinguished were the Canadian judicial thinking to take hold elsewhere. I do worry about the slippery slope for vulnerable patients who might think they have no option but taking their own lives. I remain committed to the simple Hippocratic Oath, 'Do no harm.' Don't take life. Care for the dying by relieving their suffering. And that's not just because I'm Catholic.

On 3 February 2015, the UK House of Commons after a brief but spirited debate voted by 382 to 128 to approve the Human Fertilization and Embryology (Mitochondrial Donation) Regulations. The regulations clear the path for scientists to use maternal spindle transfer (MST) or pro-nuclear transfer (PNT) in attempts to rectify mitochondrial diseases caused by defects in the mitochondria of cells. MST occurs when the nucleus of a prospective mother's egg with a mitochondrial deficiency is removed and placed in the enucleated egg from another woman without any mitochondrial deficiency. The healthy egg can then be united with the prospective father's sperm hopefully producing a healthy child with no inherited mitochondrial deficiency. PNT occurs when the nucleus of an embryo with a mitochondrial deficiency is removed and placed in another enucleated embryo without any mitochondrial deficiency. In each case, scientists assure us that the resulting healthy baby carries the genetic inheritance only or almost exclusively of the mother and the father. Critics of the proposed procedure claim that the baby has three parents, including the outside party whose egg or embryo was enucleated to provide the resultant healthy egg or embryo.

The regulation approved by the UK Parliament allows the Human Fertilisation and Embryology Authority (HFEA), the UK's statutory regulator overseeing the use of gametes and embryos in fertility treatment and research, to license such procedures.

A week before the parliamentary debate a letter was published in The Times by leading scientists and ethicists including Baroness Warnock saying:

The question that parliamentarians must consider is not whether they would want to use this technology themselves, but whether there are good grounds to prevent affected families from doing so. We believe that those who know what it is like to care for, and sometimes to lose, an extremely sick child are the people best placed to decide whether this technology is right for them, with medical advice and within the strict regulatory framework proposed. They have been waiting for the science for long enough. They should not have to wait for the law to catch up.

Her co-signatories included people like Sir John Sulston and Sir Robert Nurse, biologist and geneticist respectively, both Nobel Peace Prize winners, and the Reverend Lord Harries, retired Anglican bishop of Oxford.

Those parliamentarians opposed to granting the HFEA the power to authorise such procedures raised three types of concern. Some thought any such tinkering with human cells and/or reproduction was just plainly wrong. Some thought that it may be justified but that there was a need for greater clarity as to where such tinkering would stop — the slippery slope argument. If tinkering to correct deficiencies were permitted, why not permit tinkering to enhance human capacities, changing the DNA of the nucleus and not just of the mitochondria? Is this the door which once prised open for the most laudable of motives leads to the creation of the super-race of designer babies? Some thought there had been insufficient testing of the procedure in non-human primates and that such experimentation carried inordinate risks. It was just too early to allow adventurous medical researchers and anxious prospective parents to start experimenting in this way. Jim Shannon told Parliament:

It must be remembered that the United States Food and Drug Administration considered the techniques last year and decided that there was not enough preclinical evidence to justify proceeding. I understand that the same body has reopened the debate and has insisted that it will be at least two years before it is ready to make a judgment.

Sir Edward Leigh made the historical observation: 'The FDA, of course, refused to allow the use of Thalidomide while we did, and the rest, as they say, is history.'

Regarding the slippery slope arguments, Jane Ellison, the Minister introducing the Regulation told Parliament: 'It is defined in primary legislation that the regulations can apply only to serious mitochondrial disease. There is no slippery slope. I looked back at the debates in the House on IVF all those years ago, when some were worried about a slippery slope, and all the safeguards are still in place more than two decades later.'

After the regulations were approved, a prominent Catholic moral theologian Fr Jack Mahoney SJ published his assessment, approving maternal spindle transfer (MST) which does not involve the destruction of any embryo but only of an unfertilised egg and expressing reservations about pro-nuclear transfer (PNT) which does necessitate the destruction of embryos. With a refreshing tone open to dialogue, he wrote:

Those who hold to the moral position maintained by the Church of respecting the integrity of the human embryo from the time of its conception will have very serious reservations about using this less common method, whose success involves the destruction of a human embryo. It is therefore in the interests of respecting this view, as well as of finding the widest possible approval and support for the principle of genetic transplantation, to concentrate attention and practice on the earlier means mentioned, that of starting from two eggs, rather than creating two embryos and discarding one.

It is considerations such as those that we have been examining here that could lead us to take a cool but sympathetic look at modern medical developments, including those affecting human reproduction, and to admire and welcome whenever possible the steps being offered to prevent personal and family tragedies.

MST if safe and if successful will not affect the hereditary characteristics of the child. So the mother who donated the egg will not be a contributor to the child's hereditary characteristics. This is different from the situation of a gamete donor. I think there is little compelling in the argument that the child be entitled to know the identity of the one who donated the good mitochondria. Successful mitochondrial replacement will affect human germ lines, impacting on successive generations. So it is essential that its effects be fully understood. Of course any new procedure must be regulated in such a way as to avoid the exploitation of women.

As with many medical developments, it is always sensible to inquire where the new developments might lead. Those with ethical or prudential concerns about a new development might raise the slippery slope argument: if we follow course A1, might it not then lead to A2, A3, and ultimately A4, and whatever our disagreement about A1, none of us would embrace A4. Jack Mahoney invoked the bon mot which he attributed to Baroness Warnock: 'On slippery slopes, whether you can keep your footing or not depends on whether you are wearing skis or crampons'. Crampons are not familiar to those of us from down under. They are boots with spikes designed for rock and ice climbing. One of Mahoney's critics said the comparison of crampons and skis was facile when 'we are surrounded by legislators who openly proclaim they are on snowboards'.

The International Summit on Human Gene Editing is presently being held in Washington DC. In preparation for the meeting, Marcy Darnovsky, PhD, Executive Director of the Center for Genetics and Society has said, 'Engineering the genes we pass on to our children and future generations would be highly risky, medically unnecessary, and socially fraught.' She says, 'There is no good reason to risk a future of genetic haves and have-nots, a world with new forms of inequality, discrimination and conflict.' The Center for Genetics and Society has recently published a letter online seeking signatures, stating:

Some suggest that germline modification be allowed for therapeutic purposes but not for 'enhancement.' But the distinction between these applications is subjective and would be difficult or impossible to implement as policy. Permitting germline intervention for any intended purpose would open the door to an era of high-tech consumer eugenics in which affluent parents seek to choose socially preferred qualities for their children. At a time when economic inequality is surging worldwide, heritable genetic modification could inscribe new forms of inequality and discrimination onto the human genome.

Professor Margaret Somerville who directs the Center for Law, Ethics and Medicine at McGill University in Montreal has just published a book of essays entitled Bird on the Ethics Wire: Battles About Values in the Culture Wars. Somerville has been a long time participant in the public square involved in debates on euthanasia and stem cell research. She says 'that we can no longer assume, as we once could, that we all share more or less the same fundamental values. If society was ever that homogenous, those days are long gone.' She sees a 'crisis of conflict between respect for individual autonomy and protection of the common good' with too much emphasis on individual autonomy.

In the next few years, we will all debate afresh the laws and practices appropriate for patients at the end of life, and we will be fascinated by the prospects of creating the perfect child at the beginning of life. It is always good for lawyers and doctors to gather over a meal and to ponder afresh how individual autonomy and the common good might be best accommodated under the rule of law, and how human dignity might be more enhanced and suffering more alleviated, by being more appreciated subjectively and objectively, and how genetic breakthroughs might be investigated for the good of patients without engineering the genes that might be passed on to their descendants. Let's at all times avoid playing God whatever our religious beliefs or none. For the best lawyers and the best doctors, playing God for the best of motives is always a temptation. And for all lawyers and doctors, playing God for the basest motives risks the objectification and commodification of the lives of those human persons who happen to be our clients or patients. Let's toast the humanity of ourselves, our clients and our patients, with a fine glass of wine and attest our shared creatureliness as well as our intelligent creativity, holding central the dignity and freedom of our suffering patients and despairing clients. I daresay the times ahead will be interesting and challenging for the up and coming generations of the Brennan Medico-Legal Society and of all our families.

Frank Brennan SJ

 



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