Freedom and Choice Together

Abstract

Medical ethics involves applying moral considerations in the decision making process of medical professionals. The medical ethic of autonomy has been fundamental in the regulation of the medical profession and in the development of medical law. The ethic provides protection for individual liberty which is an essential aspect of a liberal society. The following paper outlines that the law draw upon the discipline of medical ethics in cases sacrificial separations of conjoined twins in order to protect this liberty which is integral to our contemporary society.

This paper considers the challenges posed to autonomy in cases of sacrificial separations of conjoined twins. Analysis of leading case law shows that the law has been unable to apply autonomy in cases of sacrificial separations because the body is shared. This sharing of body challenges the very essence of freedom and choice which autonomy speaks to. The subsequent lack of autonomy’s application has resulted in a devaluing of the twins and a mutilation of their bodies. However this is not to suggest that the challenged posed to autonomy cannot be overcome. By drawing on Emmanuel Levinas’ description of the Other and our responsibility to the Other we can move to reconceptualise our ideals of body to include the shared body of conjoined twins. Consequently the conjoined twins’ body would not be devalued or mutilated as autonomy would be applied to the twins together. Such a move would overcome the challenges to autonomy and reinstate protections on individual liberty in our society.

Table of Contents

Table of Contents 3

Part 3: Conjoined Twins and the Law 9

3.1 Conjoined Twins 9

6.1 Fulfilling our Obligation to the Other 18

6.2 Reconceptualising Body 19

Introduction

Evaluating the law beyond statute and case law and into the field where it actually operates is important not only to provide a context to which the law can be evaluated against but also to ensure that a clear regulative voice is prevalent. The medical profession is guided by certain ethical principles – most predominantly autonomy. The following paper will argue that cases of sacrificial separations of conjoined twins challenge the medical ethic of autonomy and as a result the law comes up short in applying this concept in the case of sacrificial separations of conjoined twins. However this concept must be revisited and applied as it is fundamental to our liberal society.

Translating as ‘the best interests of the child’ in the case of minors, autonomy seeks to afford patients of medical treatment freedom and choice regarding such treatment. In the case of sacrificial separations this decision becomes more complex as the patients’ existences are intimately entwined together. This paper will show that in the absence of sufficient precedent the law has been unable to consider autonomy in cases of sacrificial separations because it has been unable to recognise that the twins are two persons sharing one body. The freedom and choice autonomy speaks to has been beyond what the courts have been able to comprehend due a narrow interpretation of autonomy which has had damaging effects of liberty. The law’s standpoint projects that conjoined twins are abnormal. This has allowed for the suppression of the rights of these conjoined twins – most significantly a suppression of their fundamental right to autonomy. As a result the value of life for these conjoined twins is diminished and their bodies mutilated in an attempt to reduce the abnormality seen. In order to resolve this problem a reconceptualization of personhood to include the conjoined twins form is required in order to give these twins the autonomy they, like other members of society, deserve.

In addressing the challenges posed to autonomy by conjoined twins this paper will firstly discuss the relationship between medical ethics and the law to demonstrate why medical ethics should be applied by the law. The second part of this essay will look specifically at autonomy and its place at the centre of contemporary medicine and law to not only articulate what the concept entails but to also reveal the concepts normally stringent application by the law. A look at the case law surrounding sacrificial separations will then reveal how autonomy has not been correctly applied in these situations. The cases of Re A Children and Queensland v Nolan will provide the basis for this discussion. From this examination the essay will move on to answer the central question by showing the challenges that are posed to autonomy by sacrificial separations. The paper will then outline the consequences of these challenges by exploring the subsequent inadequate application of autonomy that exists which consists of a devaluation of the lives of the conjoined twins and a mutilation of their bodies. To provide a method to move forward this paper will draw on the legal theorist Emmanuel Levinas to outline our responsibility to conjoined twins. Finally it will be proposed that a reconceptualization of body may provide a solution for the challenges to autonomy sacrificial separations pose.

Part 1: Medical Ethics and the Law

Medical ethics is the ‘application of moral reasoning to the problems confronting doctors in practice’ [1] and provides a guide for the conduct of medical professionals (the terms morals and ethics are used interchangeably in this paper). Conversely the law involves the three arms of the government (parliament, executive and judiciary) creating, administering and interpreting regulations on how members of society must act. The law should consider medical ethics when making decisions within the medical field because it is a fundamentally ethical arena. Furthermore the law affirms what actions should and should not be done and subsequently sets a guide by which the medical professionals must adhere to. The law should ensure this guide is consistent by having an authoritative voice that continues to emphasise autonomy.

In cases of sacrificial separations the courts have been ardent to protest that they are a “court of law, not of morals” [2] . From a natural law perspective a law is only valid if it is ethical. Therefore on a purely theoretical level there is a necessary relationship [3] and the court cannot escape from this. Alternatively positivist legal theorists regard the law as a human construct and non-conditional upon an ethical basis. However, as Pattinson articulates, medicine deals in an area that is inescapably ethical in nature. [4] When deciding whether the ending of a young life is justifiable significant ethical questions surrounding mortality and the value of life are posed. It is submitted that even for the most tenacious legal positivist a purely legal analysis in the case of sacrificial separations of conjoined twins would be difficult because of this. As Clucas points out, simply because the court claim not to a court of morals did not mean they were not under a duty to come to the correct ethical decision. [5] We must therefore look to the medical ethics that operate in the treatment of patients to determine how to the reach the most correct legal decision.

The need to consider medical ethics when analysing the law is also important in setting a guideline for medical professionals in the future. In the area of sacrificial separations there is limited legal precedent and we must therefore go back to the reasons behind our laws and to find the actions we deem appropriate. This ultimately leads us to medical ethics. Jose Miola undertook an in depth study into the relationship between law and medical ethics and found that both needed to work together in order for law to supply a clear regulative voice which the medical profession can echo in their practice. [6] There are many ethical considerations available and it is unpractical and even irrational to believe that the law would be able to represent them all. However like all other areas of regulation the law is able to, in the context of medicine, articulate the leading ethical consideration. As will be outlined below the leading consideration in medicine should be autonomy but this has not been articulated by the courts in cases of sacrificial separations. As the concept has been applied in other areas of medical law the authoritative voice of the law has been distorted and the law must now return to this ethical consideration in order to restore the voice.

Part 2: Autonomy in the Law and Medicine

The ethical principle of autonomy relates to the notion of individual liberty which is a fundamental tenet of a liberal society. [7] Autonomy has two central elements: firstly freedom from outside influences and secondly the ability to make one’s own choices. [8] Beauchamp contends that rather than focusing solely on autonomy the medical professional should employ a ‘four principled’ approach to medical ethics which includes autonomy, nonmaleficence, beneficence and justice. [9] These principles can be given different weighting depending on the situation. Beauchamp’s model has been given great support. However the principle of autonomy has become the foundation of medical law so much so that it even enjoys supremacy over the sanctity of life. [10] For example, a competent adult Jehovah Witness may refuse a blood transfusion based on personal faith even if this will result in their death. In contemporary law autonomy has become the ultimate ethic endorsed and as Brazier argues it is ‘a trump card beating all the other principles.’ [11] Indeed the High Court of Australia has approved the ethical principle of autonomy as being “the paramount consideration that a person is entitled to make his own decisions about his life.” [12]

As a result of the ethic of autonomy being so stringently applied by the law the medical profession has followed suit. The Australian Medical Association Queensland’s Code of Ethics directs medical practitioners to “respect the patient’s autonomy regarding the management of their medical condition including the refusal of treatment.” [13] Autonomy thus requires medical practitioners to secure a patient’s voluntary and informed consent to a medical procedure [14] based on the individual’s choice and freedom to choose and not on the medical professional’s own paternalistic desires. This ensures that the power remains with the individual for self-determination and protects the very basis of our liberal society.

This is not to say that freedom and choice regarding one’s body is limitless. The law recognises that in certain situations a person may not be able, due to some form of deficiency, decide what is in their best interest. For children the High Court of Australia has endorsed the principle of the English House of Lords in Marion’s case [15] that to have the capacity to consent they must have ‘sufficient understanding and intelligence to understand fully what is proposed.’ It can be clearly determined that a newborn does not have such a level or understanding or intelligence to comprehend sacrificial separation surgery. The decision consequently falls to the child’s parent or guardian due to the parental responsibility the law places on them until the child reaches maturity – eighteen (18) years of age. [16] Safeguards are imposed on this to ensure the decision of the parents is in the best interests of the child. The best interest of the child is to consider their freedom and choice – their autonomy. As stated by Lord Scarman “…the common law has never treated such rights as sovereign or beyond review and control.” [17] The courts may therefore step in to the decision making role. In the case of conjoined twins this has happened. The courts have thus been asked to determine freedom and choice for conjoined twins. However this has posed significant challenges because courts have attempted to meet autonomy from a singleton perception rather than a conjoined twin perception.

Part 3: Conjoined Twins and the Law

3.1 Conjoined Twins

It is estimated that conjoined twins occur once in every two hundred thousand births and have an overall survival rate of five to twenty five percent. [18] The separation is a delicate procedure and one which brings with it great risks. The first successful separation of conjoined twins occurred in 1690 by German anatomist Konig. [19] Since this it is estimated that there have been at least two hundred and fifty attempts, but this figure is predicted to be much higher due to an alleged reluctance for surgeons to report on failures. [20]

Sacrificial separations are distinguishable from other forms of separations. In these situations the organs are deficient and cannot maintain the conjoined body with the result that both twins will have a premature death. However separation surgery, whilst allowing one twin to survive, will certainly result in the death of the other twin. The separation goes ahead on the premise that one twin dies in order to save the other – a sacrifice. In these situations all of the tissue within the conjoined body is still alive until surgeons remove one twin from the life-sustaining organs. [21] By 1996 there had been a total of nine documented sacrificial separations performed worldwide [22] and to date the actual figure can be estimated at twelve. This paper will be refined to focus on sacrificial twin separations as opposed to all conjoined twin separations. Whilst the issue of autonomy arises whenever separation surgery is contemplated, in cases of sacrificial separation the issue is further magnified. As this paper will argue, denying autonomy to both twins results in the death of one, the mutilation of the other and the devaluation of the whole being. In the case of non-sacrificial separations we may question the implications on autonomy as we ponder what is in the best interests of both twins. However in sacrificial separations we have the added consideration of death as a consequence which makes the question even more significant.

3.2 Law on Sacrificial Separations

The two leading cases on sacrificial separations are the English case of Re A (Children) (Conjoined Twins: Surgical Separation) [2000] 4 All ER 961 (hereafter referred to as “Re A (Children) and the Queensland case of State of Queensland v Alyssa Nolan & Anor [2001] QSC 174 (hereafter referred to as Nolan). For the courts in both cases two fundamental issues were posed:

Is the operation lawful?

Is it in the best interest of the twins to allow the operation? [23]

The case of Re A (Children) involved conjoined twins Grace and Rose Attard. The two girls were born joined at the abdomen and had a fused spine. Doctors in their attempt to consider the twins as separate beings found that Rose had a significantly poor heart and weak lungs making her the ‘weaker’ twin. A common artery enabled the heart on Grace’s side to supply the entire body with oxygenated blood. However this did not mean the twins would be able to sustain life. The strain on the heart would eventually cause it to go into cardiac arrest and result in the death of both of the conjoined twins. Separating the twins would cause the almost immediate death of Rose but would enable Grace to survive. The parents were devout Roman Catholics and as such were unwilling to deny one twin the right to life. Medical practitioners believed the greatest outcome of the tragic situation would be separation. This conflict of opinion saw St. Mary’s Hospital and the Central Manchester Health Area NHS Trust begin proceedings in the English legal system to seek a declaration allowing doctors to perform the operation. This was the first case of such a nature to come before any court of law. [24] Under the pseudonyms of Jodie and Mary, a fundamental legal and ethical debate began.

In the first appearance before the court Justice Johnson had no direct precedent upon which to draw. [25] Looking to Lord Goff of Chieveley in Airdale NHS Trust v Bland [26] Justice Johnson found that the situation was similar to withdrawing life support in that Grace and sustaining Rose’s life and as a result separating the two was lawful. The parents appealed to the Court of Appeal. The Court of Appeal justices all reached the same conclusion as Johnson J but each had a different basis for their decisions. Lord Justice Ward relied upon self-defence to permit the doctors to intervene in order to “protect” Grace from Rose killing her. [27] Lord Justice Walker looked to the intention of surgery to find it was not for the purpose of murder and was therefore lawful. [28] Lord Justice Brooke approved the operation on the basis of necessity. [29]

In relation to autonomy and the best interests of the child the three judges acknowledged its importance but found it difficult to overcome what they deemed a conflict of interests between the twins. Ward LJ recognised that the operation was not in Rose’s best interest as it would shorten her natural span and deny her inherent right to life. [30] However his honour rationalised that the conflict required a balancing act and “choosing the lesser of two evils” [31] which, as a result, prioritised Grace’s best interest and permitted the operation. Brooke LJ agreed with Ward LJ’s analysis to find that Grace’s best interest compelled the operation. [32] Finally Walker LJ found that the very fact the two were conjoined denied them autonomy and as such the separation would be in their best interests as it would restore such autonomy. [33] The surgery went ahead and within hours Rose (‘Mary’) died. The law’s perception of autonomy has therefore been challenged here because it has been unable to overcome a perceived conflict between the twins in order to be afforded to them.

On 3 March of the following year, Justice Kirby delivered the Third Gerard Brennan Lecture on the topic of Re A (Children). With regards to the decision of the English Court of Appeal, Justice Kirby stated ‘none of these explanations is wholly satisfying from a legal point of view.’ [34] Exactly two months later Alyssa and Bethany Nolan were born and the Australian legal system’s faced the same challenge in the case of State of Queensland v Alyssa Nolan & Anor [2001] QSC 174. Alyssa and Bethany were conjoined at the head and shared the cranial draining veins which shared the blood flow around their whole body. On Alyssa’s side of the body there was one kidney. On Bethany’s side no kidneys, no bladder and a club foot. Bethany’s health had substantially deteriorated and doctors believed she could not survive more than twenty four hours and her death would also lead to the death of her conjoined sister Alyssa. [35]

Unlike Re A (Children) the parents in this case consented to the operation. The court was still required to determine whether such an operation was lawful and in the best interest of the twins. [36] Under Queensland law a child is regarded as becoming a human being capable of being killed once they have completely left the body of the mother in a living state. [37] In the case of sacrificial separations of conjoined twins both have left the body of the mother and are capable of being killed. It is unlawful to kill a human being unless authorised or justified or excused by the law. [38] Justice Chesterman found that section 282 [39] provided such a justification in that the operation was necessary to prevent Alyssa from coming to harm. [40] In order to answer the question of best interests (and thus autonomy) Chesterman J looked to the reasoning employed in Re A (Children). Chesterman J found the explanation of Walker LJ on best interests to be appropriate to the Nolan case. [41] He further held that the prospect of the life for the sacrificial twin would hold nothing if continued and it would also cause the death of the other twin and therefore it was in the best interest of both for the operation to go ahead. [42] Again the concept of autonomy was challenged on the basis of an apparent conflict of interest between the twins’ claim and again.

Part 4: Freedom and Choice

4.1 How can both twins be Free and have Choice?

In sacrificial separations of conjoined twins neither twin can be seen to experience the freedom of body singletons experience and neither can make a choice without considering the other twin. The cases detailed above show that in light of this the justices have been led to pit the twin’s freedom and choice against each other. For the law the protection of autonomy of everyone has been found to be simply not possible. [43] It is here that we need to draw on the medical ethic of autonomy with a fresh perception. To do this we must look at the two aspects of autonomy – freedom and choice. Analysis of freedom demonstrates how case law has employed a singleton’s perception of freedom and has treated conjoined twins as enemies. Examination of how the court has dealt with the choice of the conjoined twins demonstrates that it is not true to what we know about the connections between conjoined twins as articulated by matured conjoined twins.

Rethinking Freedom

Referring back to the definition for autonomy provided in Part 2, the first element is ‘freedom from outside influences’. When we move to a situation whereby immediate sacrificial surgery poses a possibility of saving one twin the law has been unable to acknowledge the true freedom autonomy demands – this being a freedom from outside influence. Instead the case law, society and the medical profession has become preoccupied with freedom from inside influences.

Firstly the law assigns organs to each twin to emphasis an internal conflict as neither twin has enough orders to sustain a body and is therefore reliant on the other, often to that twin’s detriment. Chesterman J stated in Nolan, “Alyssa has only one kidney. Bethany has no kidneys and no bladder” [44] and in Re A (Children) Ward LJ stated “They each have their own brain, heart and lungs and other vital organs and they each have arms and legs”. [45] Instead of considering the twins as one body with insufficient resources to supply two bodies, the justices (perhaps led by society and the medical profession, but still no excuse) have assigned organs and have deemed one twin as stronger and one twin as weaker. [46] From this assignment of organs a battle ensues with the stronger twin only seen to be facing death as a result of the weaker twin’s inadequate organs. As a result the justices are left with no other conclusion but that ‘there is no commonality of interest’. [47] This determination assumes that there cannot be two individuals within one body if there is to be freedom. However this puts internal freedom and external freedom as the same which they are not and need not be.

The average healthy and fully functioning singleton is able to freely move their bodies without having to consult with another person. If they want to walk it’s a simple, automatic one foot in front of the other process. For conjoined twins two people share in these internal decisions. Take for example Abigail and Britney Hensel conjoined at the torso. The twins have two arms, two legs, two hearts, one liver, two stomachs, one pair of ovaries, one bladder and one uterus. [48] The twins control one leg each and have remarkably been able to synchronise their movements and walk together. [49] The two then move according to their shared body’s demand. It can be seen that these decisions are dependent upon each other and cannot be free of each other. Abigail cannot decide to walks somewhere without Britney also agreeing to it. The courts have become preoccupied with this lack of internal freedom. However autonomy speaks to an external freedom not an internal freedom. The law is able then to apply autonomy by preventing unwanted medical treatment on the conjoined body. Determining what is wanted and what is unwanted leads us to consider the choice of conjoined twins.

4.3 Rethinking Choice

If the twins are capable of having freedom we must then move to consider their choice. If Alyssa and Bethany or Grace and Rose were able to speak what would they say was their desire? It is the role of the decision maker to consider this when providing for the twins’ autonomy. They must place themselves in the position of the twins and question what it is they would want – their choice. Competent adults may choose what was in their own best interests with regard to their religion, values or other concerns. For that reason the role of the decisions makers in the cases of sacrificial separations should be to decide the best interests of the twins based on considerations that would be important to their religion, values and also their reality as conjoined twins. In Re A (Children) would Grace and Rose reaffirm their parents religious beliefs and seek to let God’s path take place? In Queensland v Nolan would Alyssa feel as though Bethany was part of her or killing her? In a world that is run from a singleton perspective the law has been unable to appropriately acknowledge the twins autonomous choice because it has failed to understand the choices conjoined twins would truly make.

Justice Ward in Re A (Children) stated: ‘If Jodie [Grace] could speak, she would surely protest, “Stop it, Mary [Rose], you’re killing me”’ [50] . This proposal presupposes that conjoined twins would essentially be fighting against one another in a Darwinian survival of the fittest. How are we able to suggest such an assumption? As George Annas states, ‘each twin might…of course, consider the other twin to be an integral part of herself.’ [51] Indeed cases of adult conjoined twins, able to make their own autonomous decision support Annas’ assumption and indicate conjoined twins would not choose separation. Mary and Eliza Chulkhurst were conjoined twins connected superficially and thus able to be separated without sacrifice. [52] The twins lived their lives together, never seeking separation. At the age of thirty four one of the twins became fatally ill. The other twin refused separation even though she was fully aware that this would result in her