Separating conjoined twins and medical decision making

Separating conjoined twins and medical decision making

Dear readers, 

This week's edition of BioEdge includes a range of stories from around the world. Two articles focus specifically on the recent Chinese gene editing scandal. A commission is being organised by the US National Academy of Medicine to write new guidelines that deal specifically with gene editing projects involving human embryos. This is a step in the right direction. Though perhaps more needs to be done to prevent rogue scientists from carrying out unauthorised research involving new biotechnologies. If a scientist is intent on conducting unethical research, they will always find a way to rationalise their work.

Xavier Symons 

Deputy Editor 

Separating conjoined twins and medical decision making

by Xavier Symons | 26 Jan 2019 |

     

Conjoined twins are rare. The vast majority of them are either stillborn or die shortly after birth. Yet occasionally twins with this condition can survive the early days and months of life, leaving parents with difficult decisions to make about medical treatment. 

BBC News reported this week on one such case. Ndeye and Marieme are conjoined twins from Senegal who have been brought by their father to the UK for medical treatment.The twins, who are close to three years old, are fused at the lower abdomen but have separate brains, hearts and lungs. They shared liver, bladder and digestive system. The prognosis for one of the twins, Marieme, is very bad. She has a weak heart, and if separated, there is a chance that she will die. Yet if no operation occurs, there is a fear that both of the twins will die.

The situation raises a range of medico-ethical issues. For one, there is a question about the ethics of separating the two twins, knowing that one of the twins is likely to die as a result. In conducting the operation are doctors killing one of the twins? 

Similar cases have attracted media attention in the past. Some 19 years ago, conjoined Maltese twins Jodie and Mary arrived in the UK for treatment. The twins had a fused spine, and any separation operation was likely to result in the death of the weaker twin, Jodie. The operation did eventually take place, and Jodie passed away, while Mary is still alive today.

It appears likely that the Senegalese girls’ father, Ibrahima, will request an operation to have the girls separated.

But what if he were to choose not to operate? This could very well lead to an outcome that many in the medical profession would see as tragic -- both twins dying.

Past cases have resulted in legal battles that have been traumatic for families and very undesirable from the perspective of the hospitals involved.

In a post on the blog Practical Ethics, Oxford neonatologist Dominic Wilkinson suggested one way of approaching decision making in this context.

The best option in this case (as in all cases) would be for the parents and the healthcare team to reach a common understanding about what would be best. That may yet be possible. If parents refuse treatment, doctors should avoid ethical imperialism and be conscious of the values (and decisions) that would apply in the country of origin. However, ethical pluralism is not ethical relativism. How much weight we should give to those values, whether that would justify making a different decision for a child born overseas, than for a child born in the UK – will require careful unpicking of the reasons in favour and against treatment.

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