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| REVIEW ARTICLE |
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| Year : 2017 | Volume
: 6
| Issue : 10 | Page : 35-40 |
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Important ethical issues in the surgical separation of the conjoined twins jane and may that consequentialism cannot be satisfactorily dealt with
Abdulkabir Ayansiji Ayanniyi
Department of Ophthalmology, College of Health Sciences, University of Abuja, Abuja, Nigeria
| Date of Web Publication | 13-Feb-2018 |
Correspondence Address:
Abdulkabir Ayansiji Ayanniyi
Department of Ophthalmology, College of Health Sciences, University of Abuja, Abuja
Nigeria
 Source of Support: None, Conflict of Interest: None  | Check |
DOI: 10.4103/nnjcr.nnjcr_17_17
Conjoined twins are interesting human malformation. Their peculiar nature necessarily generates interests across divides. Ethical issues were generated by the surgical separation of the conjoined twins Jane and May. The consequentialist would argue that the separation has overall good. Nevertheless, a consequentialist would not be able to justify some important ethical issues arising from such surgical separation.
Keywords: Conjoined twins, ethical issues, surgical separation
How to cite this article:
Ayanniyi AA. Important ethical issues in the surgical separation of the conjoined twins jane and may that consequentialism cannot be satisfactorily dealt with. N Niger J Clin Res 2017;6:35-40 |
How to cite this URL:
Ayanniyi AA. Important ethical issues in the surgical separation of the conjoined twins jane and may that consequentialism cannot be satisfactorily dealt with. N Niger J Clin Res [serial online] 2017 [cited 2023 Dec 8];6:35-40. Available from: https://www.mdcan-uath.org/text.asp?2017/6/10/35/225333 |
| Introduction | |  |
Conjoined twins are monozygotic twins that failed to complete normal division after conception. Often, the surgical separation of conjoined twins elicits general interest, particularly among parents, health professionals, ethicists, lawyers, and theologians. The consequentialist would necessarily support surgical separation of the conjoined twins should its overall benefit outweigh its presumed demerits.
This essay examines some important ethical issues raised by the surgical separation of conjoined twins Jane and May case, especially parental autonomy, and informed consent, beneficence, nonmaleficence, justice, personhood, and sanctity of life as well as cost and social justice which consequentialism cannot be satisfactorily dealt with. Meanwhile, a case report of Jane and May's conjoined twins and consequentialism are addressed.
| A Case Report of Jane and May Conjoined Twins | | |
Rich and Mike Brown were devout Catholic couple and lived in the homeland of Maltese island of Gozo. At 4th month of Rich's first pregnancy, the ultrasound scan revealed that the fetuses were conjoined twins. She was transferred to St. May's Hospital, Manchester, UK, courtesy of existing agreement between Malta and the British National Health Service (NHS) on specialized medical treatments.
A magnetic resonance imaging finding suggested that the smaller twin was not viable. The Browns rejected the option of abortion. The pregnancy was delivered through cesarean section at 42 weeks and the twins bodies were fused from the umbilicus to the sacrum. The heart and lungs of the smaller twin, May, were nonfunctional. May was incapable of an independent survival as she received oxygenated blood from the larger twin, Jane, whose aorta fed into May's aorta. Furthermore, May suffered severe brain defects. Jane, the healthier twin, had normal organs. However, Jane's heart and lungs would gradually decompensate under the stress of a blood supply to two bodies. Within an estimated period of 6 months to 2 years, both twins would die from congestive heart failure. Nevertheless, a surgical separation had a 95% chance of survival for Jane, but May would die. Jane would benefit from further serial surgical operations to correct other deformities; nonetheless, she would live a relatively normal life.
The Browns rejected surgical separation for Jane and May, rather preferring nature to take its course. Furthermore, the Browns claimed that, following the separation, it would be difficult to manage disabled Jane in Malta due to Maltese known hostility to the disabled and the absence of specialized medical treatments. However, there was a surgical separation of the twins 3 months after their birth but following two separate court rulings against the Browns' objection to surgical separation. Expectedly, Jane survived and May died.[1],[2]
Consequentialism
Act consequentialism holds that action is right if there is a balance of good over bad. Rule consequentialism, on the other hand, holds that the rule that maximizes benefits is the preferred rule. Utilitarianism is concerned with welfare, happiness, and absence of pain. Utilitarianism looks at the aggregate good from all parties in Jane and May conjoined twins' case. Consequentialism appeals to action that will maximize the general good though not necessarily egalitarian in the distribution of welfare.
The expected good from surgical separation would be safety of Jane's life and improve experience for health professionals with potential benefit to the society. Normal intuition will appeal to utilitarian reasoning that when one is limited to two choices of either losing two lives or one life, it is unreasonable to lose the two. This provides the balance of value over disvalue. The consequentialist would argue that the separation was desirable because it would maximize good.[3] Nevertheless, the separation essentially generated ethical issues as parents were opposed to it aside causing May's death. This essay now discusses these ethical issues.
Important ethical issues in surgical separation of Jane and May
Parental autonomy, informed consent/rejection, and paternalism
Autonomy means self-rule or having full control over ones' affairs.[4],[5] It means the Browns having unhindered freedom to decide their children's treatment. Jane and May were infants that could neither consent nor assent to their own treatment by virtue of being incompetent.[6] Competency means the capacity to “receive, weigh, process and retain relevant information.”[7] The Browns were surrogates (for Jane and May) and were morally and legally qualified as competent adults to take a decision that would be in the best interests of their children.[8] The Browns' consent to separation of conjoined twins was a crucial ethical issue.[9] However, the Browns did exercise their rights by declining consent to surgical separation (and even appealed High Court judgment) since they were not convinced such treatment was necessary or in their children's best interests. They reasoned both Jane and May had equal rights to life, and May should not be killed for Jane to survive.[10] The Browns left nobody in doubt that they believed in sanctity of life, thus preferring a natural course.[11]
The Browns did exercise paternalistic protection for their biological children. The interests of their children were their deep concern and nothing to suggest otherwise. Moreover, it was permissible for the Browns to raise their children along their religious beliefs. Furthermore, the Browns have to be at peace with themselves by abiding with the Catholic teachings. It was reasonable for the Browns to feel violated as their autonomy was disrespected by health professionals through surgical separation. The harmonious parent–child relationship is vital to children's welfare. The separation should not have been forced on the Browns against their wish, rather there should have been dialog toward a compromise.
The consequentialism cannot satisfactorily explain the ethics of the Browns' informed rejection (decline consent) of surgical separation of Jane and May. Notwithstanding the permissibility of the Browns' informed rejection of surgical separation, the consequentialism would not appreciate it as it would not maximize good consequences. The Browns' sentiments, including religion, have no appeal to consequentialism but rather a balance of good over bad dictates what is right or wrong. Utilitarianism is about welfare to all concerned parties rather than the Browns' personal interests. The position of consequentialism violated a very important ethical issue of the Browns' autonomy and informed rejection. It means consequentialism had no regards for the Browns as autonomous individuals whose decision should be respected.
Importantly, the Browns demonstrated that they were a very responsible couple and very committed to their family and belief. They were convinced of what they wanted: they rejected abortion, they appealed the High Court rulings, and they were categorical about their equal love for Jane and May. They stated in clear terms their dislike to nurture disabled Jane in a hostile Malta.
On the other hand, it is doubtful if the health professionals have a greater stake than the Browns who have proved that they were competent and that their decision was well grounded in the Catholic ethics of sanctity of life. Nonetheless, the Browns have to be overruled by the state law which has final say on minors' best interests. If consequentialism is about common welfare or happiness, it is doubtful whether May and Jane would be happy and definitely the Browns were not. It is arguable that health professionals probably insisted on separation though, within the legal limits, to save Jane because of their perceived gain in improved expertise or fame.
The consequentialism cannot justify the action, rather it rocks bioethics to its foundation as the Browns' autonomy based on the informed rejection of surgical separation was rudely violated. The consequentialism approval of separation would have been reasonable or ethical in a situation where the Browns were neutral or consented to the separation but definitely not when they were strongly opposed to it. The decision on the twins' surgical separation no doubt has left deep wounds in the Browns concerning their loss of May, religious belief, perception of the health system, and the society in general.
Beneficence, nonmaleficence, and justice
Consequentialism cannot justify beneficence, nonmaleficence, or justice to May. The separation was obviously not in the May's best interests. It was no good to her. Furthermore, the separation was harmful to May as it was a mutilating surgery and caused her death. Furthermore, May was unjustly separated from Jane. It could be argued that both Jane and May shared the aorta supplying oxygenated blood to them. The ceding of the aorta to only Jane through separation could be seen as an injustice to May.
May's personhood and sanctity of life
These are another very serious ethical issues raised by separating the conjoined twins Jane and May case that consequentialism cannot be satisfactorily dealt with. Many criteria have been used to determine personhood.[12] Legally, personhood starts immediately after birth, when newborn is physically separated from the mother's body. An individual is having the brain life once born, that is, living legal person. Personhood in philosophical sense is seen as having a “functionally integrated part of a living human brain” or “something sufficiently similar.” Psychologically, personhood has features of “consciousness, belief-formation, and rational thought.”
Harris argues personhood refers to human being; it is having “biographical life,” that is, having full moral status. It entails ability to value existence, being “harmed” by way of killing.[1] To Harris,[1] “human non-persons” or human who are not “fully fledged persons” may include zygotes and embryos, or individuals who are “brain-dead” (persistent vegetative state), “anencephalic infants.” Finally, Harris holds that May and Jane, being infants, lack certain cognitive capacities that are morally and legally required to sustain a biographical life. Nonetheless, legally and morally they were human beings.
It is widely held that life is sacred and that it is wrong to kill an innocent person. The “Declaration of Euthanasia” affirms “nothing and no one can in any way permit the killing of an innocent human being, whether a fetus or an embryo, an infant or an adult, an old person, or one suffering from an incurable disease, or a person who is dying.” However, “the declaration only absolutely prohibits killing, it does not impose absolute duty to prevent the death of innocent human beings.”[13]
Glover argues that life itself is intrinsically valuable so also is being human.[14] Killing is wrong because it takes away life and as a result of its side effects to the deceased relations and the society. Glover maintains that being alive or conscious is part of a life worth living and that killing is wrong as it destroys a worthwhile life. However, Glover cautions that it does not mean individuals with apparently “unworthy” life should be killed.
Furthermore, Marquis holds that killing is wrong because of value of human's future.[15] The life holds many possibilities toward human achievements. According to the “ordered universe” view, things should be restored to what they ought to be rather than interfering with them.[16] The sick should be healed and life should be saved, and a human being should not play God and attempt to change the natural state of things.
Prima-facie, it was wrong to kill May as she was a human being. Killing deprived May of her life. The surgical separation would in no way helped May, either by an extension of her life or material improvement in her health. May suffered the worst risk of surgical separation by losing her life and of course without having any psychological and emotional benefits for saving Jane.[12] The purported restoration of May's body integrity was a ruse, especially, in a body with no aorta, bladder, or blood flow. The claim that surgical separation was in the best interest of May was a myth rather it was in the interest of Jane alone. To May, it was destruction and her continued dependence on Jane should be preferable.[17]
The consequentialism holds that life is valuable, utility, or good. However, one of the pitfalls of consequentialism toward purported greater good was obvious in the separation of Jane and May. Although it professes welfare, simultaneously individual's interests suffer. May was sacrificed for the welfare of others. Ironically, May did not count for one. She lost everything. Consequentialism cannot satisfactorily defend (beyond general welfare) why May should lose her life. Utilitarianism bothers not with the motives for actions but rather with its results. Seedhouse argues that an act should produce the greatest balance of good over bad to be right even if morally wrong.[18] Consider an unethical practice that earned a surgeon a professional deregistration or an act that attracted a capital punishment to a man who unjustly kill many people. Both condemnable acts would appeal to consequentialism simply because it led to reforms that benefit generations producing happiness or welfare.[18] It was immoral for consequentialism to justify the killing of May just because it would maximize good. It was wrong not only because May was a human being but also because a life was lost. Henceforth, this essay will discuss some important ethical arguments outside consequentialism that provide reasonable justifications for sacrificing May.
Ordered universe antagonists' argument
The opponents of ordered universe argue that there is no natural state. Human beings should work for and create harmonious relation themselves. Although there are nature-imposed limits to what can be achieved, there are no limits on which of the possibilities to be achieved.[16] This argument appeals to surgical separation.
Anatomical defects
The handicapped and pro-lifers would argue that May was a human being despite her life-incompatible defects and should be given chance to live.[19] However, sacrificing May might be permissible on account of her life-incompatible anatomical defects. May was depending or parasitizing on Jane for survival. May could even be compared to a teratoma that should be surgically removed from its host. It is arguable that May was not a living human being based on her doubtful level of consciousness and defective brain. Pearn argues that distinct bodily anatomical parts, a functional and independent brain, and capacity to independent communication determine existence.[9]
Act and omission
An act carries with it a legal liability, an omission does not. There is no definitive act in surgically separating Jane and May. The separation of Jane and May leading to May's death was omission. The cutting of blood supply to May was omission. It is like withholding feeding to an infant with birth defects or withholding oxygen supply to a patient in a persistent vegetative state. An act is killing while an omission is letting die. It is unjustifiable to act to end May's life but permissible to withhold life-sustaining blood supply from Jane, especially to May, who was disabled, had low quality life, and limited life expectancy of a few months. Very importantly, May was killing Jane.[12]
The doctrine of double effect and defense of necessity
Killing is morally and legally unacceptable; however, unintentional killing in self-defense is permissible.[12] The doctrine of double effect can be entertained when an act produces two effects, one good (intended) and one bad (unintended) but foreseen.[9],[12],[20] It has applications in health care, for instance, the use of morphine to relieve pain in terminally ill patients. The patient is relieved of the pain (good effect – intended), but morphine is associated with the side effect of hastening the patient's death (bad effect – unintended but foreseen).[9]
There are four conditions for an act to be justified as double effect. The action must be permissible –not intrinsically bad. The bad effects should be unfortunate and regrettable; it should not outweigh the good effects and is not a means to achieving the good effects. Its permissibility notwithstanding, a surgical separation of conjoined twins with an estimate of 100% mortality for both twins is a futile effort, save experimental treatment where there is informed consent.[21]
Based on these criteria, it can be argued that (i) May's death was unintended by the health team. The health team would have been happier saving both Jane and May and would definitely not view May's survival as a failure of the surgical separation. (ii) Although both lives were important, May's death was not sufficiently bad to outweigh the good of saving Jane's life. Without the surgical separation, both May and Jane would have died soon. (iii) The surgical separation was not intrinsically wrong/bad. (iv) The death of May was not a means of saving Jane. The surgical separation was a common cause of double effect: Jane's survival and May's death.
Remarkably, it is a contentious issue whether good effect (Jane's survival) outweighs the bad effect (May's death) of the separation, and also, whether May's death (bad effect) was used to achieve Jane's survival (good effect). For instance, some Roman Catholic doctors, church representatives, and pro-lifers would argue that surgical separation that led to May's death was manslaughter or euthanasia that could not be justified by quality life for Jane. Contrarily, many doctors and parents would support a separation that sacrifices a defective twin to give a healthy twin a chance to live.[9] Moreover, the doctrine of double effect has been criticized for its general admissibility of all manners of actions such as typical act consequentialism.[12] Nevertheless, the surgical separation of the conjoined twins, like in many other medical situations, hardly meets all criteria of doctrine of double effect.[9]
Presumed consent, surrogacy, and martyr
This can be likened to a family ethics, wherein the Browns serve as surrogates to May who presumably consented to donate her organs to Jane who has high chance to survive. As infant, May lacks the ability to consent or assent and would soon inevitably die. The argument assumed organ donation by May.[21] Remarkably, this argument is valid in many real-life situations or in some families. However, it Maybe difficult to substantiate in Jane and May's case as the parents opposed the separation. Moreover, it is doubtful if May would donate her organs to her own peril.
On the other hand, it might be presumed that May would voluntarily offer to die as martyr by accepting to sacrifice herself for Jane to live.[22] This idea may sell as a religious dogma. May would be encouraged by the fact that she would soon die. Since Jane and May have equal right to life, the Browns (surrogates) can appeal to the consent reasoning to justify increasing the right to life for Jane at the expense of May.
Unjust aggressor
This is metaphorical in meaning. May was seen as killing Jane, and if nothing was done, she would kill Jane and herself. Since Jane could not help herself, it was reasonable to rescue her from the aggressor (May) to save her life. Consider a narration of two mountaineers who are tied to each other with a rope. The lower one accidentally slips and the upper one cannot support the weight of the hanging lower one. It is reasonable for the upper one to cut the rope to save self. Furthermore, consider a war-torn community where a number of people are in hiding from the passing enemy forces, and a baby started crying. It happens the mother clasp the baby's mouth with hands only to discover she has suffocated the baby after the enemy forces have left. The baby died for common good though the death was unintended.[21] The examples appeal to basic instinct to support argument that separating May from Jane was justified if truly May was tormenting “innocent” Jane. However, it may be difficult to prove that May was an aggressor rather than being innocent.
Designated for death
This is an ethical reasoning from rabbinical scholars.[22] It is reasoned that individuals due to their peculiar circumstances are programmed to die. Imagine two men escaping from a burning airplane. The parachute of the second man fails to open. As he falls past the first man, he grabs his leg. It happens the parachute of the first man cannot support the weight of both men. The first man is justified to kick the second man away. He would definitely die whether he falls alone or grabs the first man's leg. The failure of his parachute at a very critical moment has designated him for death. May's anatomical defects had designated her for death.
Cost and social justice
Jane's life was saved through an extraordinary means; thus, an ethical issue. It was extraordinary or disproportionate as it was very burdensome to the Browns and imposed excessive expense on NHS. It has been argued by some Catholic moralists based on extraordinary means of preserving life or health requirement of surgical separation of Jane and May that the separation was permissible but not required, whereas other viewed it as morally wrong and not permissible as it was intentional killing, a mutilation of May.[1] Importantly, there was a long separation of the Browns from Malta, and they must continue to support Jane. The Browns have to contend with Maltese hostility to handicapped Jane and source elsewhere specialized care that Jane would require. Moreover, NHS committed huge resources into the treatment. This might translate to depriving many unknown (statistical others)[21] potential beneficiaries treatments as NHS has finite funds.
It can be argued that consequentialism would not be able to justify spending huge resource to save only Jane. It was not untrue that the welfare was not maximized. It is a fact that there are countless dying infants, who need a fraction of what was expended to save only Jane. For example, consider an estimated amount of £100,000 was expended on Jane's treatment. Imagine there are another ten infants in Malta who are suffering from life threatening malnutrition and treatable diseases. These infants would be otherwise healthy following treatment. Suppose each child will require about £10,000 to survive on infant formula and drugs. Assuming the following: (i) an average life expectancy in Malta to be 80, (ii) a year of healthy life expectancy to be worth 1, and (iii) a year of unhealthy life expectancy to be worth <1.[23] Treating each of the malnourished infants will bring a quality-adjusted life years (QALY) of 80 and an aggregate QALY of 800 for the ten infants. On the other hand, because of Jane's disability, her QALY would be, <80 as she earns <1 QALY per year of life.
| Conclusion | | |
This essay has discussed important ethical issues raised by the conjoined twins Jane and May case that consequentialism could not be satisfactorily dealt with. The ethical issues include the Browns' autonomy and informed consent, beneficence, nonmaleficence, justice, personhood, and sanctity of May's life as well as cost and social justice of the treatment. Regrettably, the Browns' right to oppose the surgical separation of the twins was overruled by the courts, a violation of the Browns' autonomy and informed rejection of separation. The separation was an injustice to May. Although May was recognized as a person, her life could not be preserved. A number of ethical reasoning beyond consequentialism provided tempting/reasonable justifications for sacrificing May to ransom Jane's life. May had anatomical defects that were incompatible with life. Probably, May could be considered as nonfull-fledged human being to sacrifice her for Jane. The separation was considered an omission rather than an act toward killing May. The separation had intended the effect of saving Jane and unintended effect of sacrificing May. May presumably sacrificed herself to save Jane. Furthermore, May was considered an aggressor dragging Jane with her to their death. May was also seen as already programmed for death considering her defects which reduced her life expectancy. Finally, the huge amount committed to save only Jane raised ethical issues as it could yield greater welfare if made available to other needy beneficiaries. Consequentialism failed to maximize welfare after all.
Acknowledgment
The author would like to thank Dr. Sorcha Ui Chonnachtaigh of Centre for Professional Ethics at Keele, Keele University, Staffordshire, United Kingdom, for her useful comments on the manuscript.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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