From the very beginning, the quest of a pair of Iranian conjoined twins to become separate individuals was certain to grip the imagination of the world.

Ladan and Laleh Bijani were smart, articulate and determined. They were also 29, joined at the head and had been told repeatedly by medical experts that the probability of them surviving a separation surgery was zero.

That was, until they came across Singapore neurosurgeon Dr Keith Goh.

The Bijanis first read about Goh in 2001 after he successfully separated 11-month-old Nepali twins, Ganga and Jamuna Shrestha, who were joined at the head. He had used a new image guidance technology to plan the complex surgery previously unavailable to surgeons who had examined and turned down the Bijanis.

Encouraged, Ladan and Laleh wrote to Goh. By July 2003, they were ready to undergo their own separation surgery at the Raffles Hospital in Singapore.

The marathon operation begun on July 6 and within three days, the two women were separated. Tragically, they were also dead.

The fact that the odds were stacked so heavily against them was already sufficient cause for the surgery to attract widespread attention. But what split popular opinion afterwards was whether doctors were right to proceed with the risky procedure even with the twins' express consent.

The issues remain very much alive, as was evident during a spirited debate entitled 'The operation on the Bijani twins was proper from a medico-legal and ethical standpoint', at the Malaysian Law Conference last week.

Pro-choice argument

On the one hand, it was well argued that the twins had the right to make the decision as to whether or not to proceed with the operation.

Malaysian Medical Association Ethics Committee chairperson Dr Ravi Jegasodhy said the Bijani twins had the right to choose.

While there was no imminent threat to their lives, their mental health was clearly deteriorating due to their respective desires to be separated, he said.

"What life would they have if they continued to live the way they did? The twins had psychological needs as well and it was well documented that they were already on anti-depressants," he explained.

"They had been turned down twice in Germany, so it was a considered decision that they took and not one that was made on the spur of the moment."

Jegasodhy also rejected arguments that the operation was "doomed from the start", noting that the procedure followed by the Raffles doctors had been meticulously planned.

"A lot of research went into the procedure and there was a 50:50 chance that the surgery would succeed. The twins were fully aware of the complications that could arise, including death," he said.

Dr Puteri Nemie Jahn Kassim, assistant professor at the International Islamic University law faculty, supported this view.

She said the operation was proper for four reasons:

  • The twins had given their legal valid consent for the surgery to proceed.

  • The quality of life considerations were important because of the girls' distinct personalities.

  • There was shared decision-making between the patients and the doctors involved.

  • Technological advances had made the surgery viable although there were inherent risks because of the pioneering methods used.

    • Puteri stressed that, for life to be meaningful to the twins, they had to be able to respond to their environment as they wished.

    "They were distinct and intelligent individuals. The operation offered them a chance for a better quality of life. Everything would be more meaningful to them if they could live their lives as separate individuals," she said.

    Weighing choices

    However, these arguments also raised other key issues - the importance placed on patients' autonomy (right to choose), doctors' responsibility, and ultimately whether doctors had compromised the patients' well-being for other considerations.

    Malaysia's Medico-Legal Society president Dr Alex E Delilkan, in opposing the motion, said although there has been a rise in decisions involving patient autonomy, there remain boundaries beyond which medical practitioners should not venture.

    "Doctors do not follow a patient's preference if lives are at stake. An advance statement by the patients cannot authorise doctors to do something outside the law or commit an act which could end a patient's life. If we do this, then we will come to the slippery slope of euthanasia," he said.

    Lawyer Darryl Goon said the surgery was "foolhardy" and was clearly not within the ambit of the Hippocratic Oath - the pledge which sets out the moral and ethical obligations of doctors to their patients vis-a-vis the sanctity of human life and relief of suffering.

    He maintained that the condition of the twins prior to the surgery did not fulfill the fundamental requirements of "need and urgency".

    True, the twins did not like being conjoined but they had been able to cope for the past 29 years. They had both earned law degrees and seemed to have balanced personalities. If they had serious psychological problems, Goon said, these were not apparent.

    Furthermore, Goon pointed out that doctors have given the twins a life expectancy of 50 years. As such, there was no immediate requirement for surgery to be carried out.

    Decisions analysed

    A far more disturbing concern for participants was whether doctors had fulfilled their role as medical practitioners by giving the twins the right medical advice based on their well being only.

    Delilkan and Goon suggested that this was where the Singapore doctors had failed their patients.

    For instance, both found it objectionable that team co-leader and head surgeon Goh had left the operating theatre in middle of surgery to seek the permission of family members on whether or not to proceed. This happened when complications during the operation drastically reduced the twins' chances of survival.

    "Why pose the question to the family in the middle of surgery? Shouldn't the doctors have been sure of what they were going to do before the operation?" questioned Goon.

    While the debaters did not explore this particular aspect further, an article published after the failed surgery alleged that other considerations may have prompted the hospital's decision to take on the case.

    One such report, entitled 'Till Death Do Us Part' and published in Wired magazine's October edition, gave an unflinching view into the cold world of healthcare business.

    According to writer Joshua Davis, there is always competition within the medical industry to attract conjoined twins - successful separations would provide just the kind of publicity craved by many hospitals seeking to raise their profiles.

    "Accomplishing a medical first, as the doctors in Singapore were hoping to do with the Bijanis, can lead to more investment, more patients, more research funding and - in cases where the hospital is a publicly traded entity - higher stock prices," Davis said.

    And Raffles Hospital, where the surgery took place, had then been floated for just four years. Its stock was in a slump until news of the Bijani twins' operation sparked a frenzy among traders, he said.

    As a result of the developments, said the article, volume on Raffles stock hit a five-year high and was bid up 25 percent from its close just five days before the surgery.

    All in all, stock value rose nearly 60 percent from the time of the twins' arrival in Singapore in November last year. After the failed operation, the stock value fell 10 percent, but never collapsed, according to Davis.

    Given such claims, it is inevitable that questions are being asked as to how much doctors were swayed by the underlying need to boost the hospital's profile and whether they had given the right advice to the twins notwithstanding these extraneous considerations.

    Were the twins treated as patients in their own right? How much were they considered valuable publicity commodity? Unanswered, these questions raise an ethical dilemma that cannot be brushed aside.

    Contacted by malaysiakini today, a hospital spokesperson said: "A lot of interviews had been given after the operation. We feel we have reached closure. This is in addition to the fact that Dr Keith Goh is no longer with the hospital - his last day was on Monday (Dec 15)."

    A hospital statement dated Dec 16 said Goh., 42, will be taking up a teaching position from Jan 5 as associate professor of neurosurgery at the Chinese University of Hong Kong, while pursuing his MD in paediatric neurosurgery. Raffles has appointed him "a sessional consultant" during interim visits to Singapore.

    Media hype

    Another factor which has to be considered is the impact of the media onslaught on events leading up to the ill-fated operation.

    It is undeniable that the human story that came across in media reports of the twins greatly eclipsed the reality that they were about to face a risky procedure from which they may not survive.

    Davis found that, soon after the twin's arrival in Singapore, Raffles had dubbed the surgery 'Operation Hope' and "plastered the Bijanis' photos all over (the hospital's) website and in-house promotional newsletter".

    The media, predictably, picked up the story and gave it a life of its own. Journalists jostled for interviews with the cheerful twins and the neurosurgeons. This was supplemented by video footage showing the twins going about their daily chores in Tehran.

    The publicity had the effect of enhancing expectations and raising hope all round. As for the risks and the cautionary words, these were played down, inadvertently or otherwise.

    Few remembered any of the interviews conducted with the German neurosurgeons who had turned down the Bijanis' requests in 1988 and 1996.

    Even fewer remembered any particular emphasis on less rosy outcomes - that only one of the women would survive, that their brains may not recover from the trauma of separation, or that they may suffer debilitating strokes as a result of the surgery.

    There was no doubt that the operation had taken such matters into consideration. Wired reported, for example, that Laleh would be the one to save if a stroke occurred during surgery and the twins needed to be rapidly separated.

    Instead, by the time the surgery begun, the lobby of the hospital resembled a media centre with more than 60 journalists waiting to report the latest developments.

    CNN

    broadcast hourly updates worldwide, while the BBC stationed a correspondent in Singapore to provide 'live' bulletins during news broadcasts for the duration of the operation. The report on their deaths was highlighted and Internet pages opened for tributes .

    The 'human interest' story continued to receive media attention into the weeks leading up to the funeral of the twins in Iran, where they were accorded a moving 'homecoming'. Friends and relatives buttressed the idea that the twins would have wanted to be separated at all costs.

    Raffles, meanwhile, swiftly moved to support its operating team and to show their human side, with doctors involved in the procedure expressing their sadness over the death of the women even as they defended their decision as being "correct".

    In retrospect, what stands out clearly is the lack of serious reflection on core issues. Indeed, the suspicion arises if there was an attempt - however subtle - to shift responsibility solely to the twins' determination to live separate lives.

    The Bijanis may have asked for the procedure, but did they have the right information to make an informed choice? Did doctors impress upon them the severity of their situation or were the girls themselves swayed by misplaced optimism? Was the media blitz 'encouraged' to the extent that it focused on a potentially happy outcome?

    Difficult issues

    A final concern that was dealt with during the Malaysian Law Conference debate was whether all the criticism against the doctors was made in hindsight in view of the twins' death.

    Several participants argued that - had the surgery been successful - there would have been no scrutiny of the medical ethics. It is only the failure which had prompted people to re-examine the decisions behind the case.

    Perhaps, or perhaps not. These are never easy issues to deal with particularly when the world looks for hope in such cases and draws so much optimism from success stories.

    To put things in context, debate moderator Dr Yeoh Poh Hong - past master of the Academy of Medicine Malaysia - reminded participants of the ethics debate that had arisen over the 2001 case of Maltese conjoined twins, Marie and Jodie.

    Marie was born without a heart and lungs and was dependent on Jodie. Doctors advised the parents that both girls would die of oxygen shortage if they were not separated.

    The parents, as devout Catholics, took the Roman Catholic church's position that it would be indefensible to take the life of one individual to save another.

    The matter went to the British Court of Appeal which declared that it was lawful for separation surgery to take place. This would practically be a death sentence for Marie who could never survive on her own. The operation was to save Jodie, who would otherwise have died in time.

    Although initially opposed to the judgment, the parents later said they were grateful that the court's decision had spared then three-month-old Jodie from being doomed with her sister.

    This could be held up as an example of the fact that patients (or their guardians) need not always make the right decision when they are directly and immediately involved.

    What such cases show is that a standard ethical position would be meaningless. Each medical case will have to be examined on its own merit, while medical personnel must resist any external consideration such as publicity, profit or pressure.

    This, at least, was proven to be the case during the law conference. From an early show of hands in favour of the proposition that the surgery was "proper", the audience was sufficiently persuaded after the 90-minute debate to overturn the motion.