‘To treat or not to treat’- the modern physician’s dilemma in the discussion of paediatric end of life care

Background

Paediatric end of life care is becoming an increasingly prevalent conundrum for doctors. With an increase in premature neonatal survival, a new population is arising1. End of life care now includes babies who have beaten their statistical survival probability odds, bringing new ethical considerations. Highly publicised cases of Charlie Gard and Alfie Evans have caused public uproar, presidential involvement and professionals receiving death threats3-5. The courts often become involved, a traumatic experience for both doctors and parents. Could perhaps the answer in the best way to manage such cases lie in returning to ethical theory and principles? Furthermore, could revisiting ethical theory shed some light on the reason as to why the courts are often seen backing the doctors’ decisions rather than the parents desires?

Due to word constraints, this summary only describes main discussions. Others investigations have not been covered but are mentioned in the conclusion.

Methodology

Information was obtained through literary searches and databases. Modules taken in Medical Ethics and Law and Disability in Society, provided skills and knowledge in interpreting, understanding and criticising end of life law and ethics.

Key ethical principles

It has been suggested that a thorough understanding of ethics will aid decision-making6. However, as ethical principles are explored, more clashes between them are found. Identifying clashes illustrates inconsistencies in end of life reasoning that is currently used as justification in paediatric end of life decision-making.

Autonomy

Autonomy is the foundation on which patient desired passive euthanasia (PPE) is built on, as seen in Re B7. However, autonomy is not respected in active euthanasia (AE) or assisted suicide (AS) as seen in the case of Tony Nicklinson8. Therefore, the discussion surrounding autonomy is complex and inconsistent enough without the consideration of paediatric patients who are unable to voice their autonomy, with Gillick’s competence also being of no use in the neonate population.

To overcome this, English Law requires parents and clinicians to agree on a ‘best interests’ decision on behalf of the child with the courts making the decision if disagreement, as was seen with Alfie Evans, occurs. However, ‘best interests’ is vague and difficult to gauge and gives rise to a standoff between the parents’ and doctor’s autonomy. Patient autonomy is not absolute, with patients not able to demand treatment. AE and AS requires a substance to be administered whereas patient requested PE declines treatment and is therefore covered by autonomy. This concept could be extrapolated to parents, perhaps offering a solution to when disagreement occurs. Parents’ autonomy by proxy can decline treatment but not demand it. However, this is also not clear-cut as doctors can also override parent’s decisions in refusing treatment, if they believe it not to be in the child’s best interests e.g. blood transfusions in Jehovah’s Witnesses.

Sanctity of life

Sanctity of life is often cited why AS and AE cannot be legalised. However, this argument is often criticised, due to its religious origins having no place in secular state9, but also as it is of no concern when treatment is withdrawn.

Dworkin argues sanctity of life coexists with quality of life. If a person has a poor quality of life, its value diminishes and therefore no longer protected by the principle9. However, Dworkin’s reasoning is problematic as it justifies terminating individuals’ life with social/mental issues who believe their life has no value when other methods to remedy that belief are available. Furthermore, in paediatric cases it is arguably impossible to make a judgment about the kind of life a baby will have. Clinicians can attempt to predict but they cannot say for definite, seen in the ongoing debate surrounding Down syndrome and terminations10,11. Furthermore, value comes from more than just health. Those considered ‘healthy’ for numerous social reasons lead lives with seemingly no value. However, suggesting a neonate’s life not be protected for either having a disability or being born into difficult social situations e.g. as an addict due to maternal drug use would be absurd, rendering sanctity of life also useless in this discussion.

Intention verses foresight

A loophole to explain why AE and AS are illegal, yet doctor dictated PE is not, is that the latter foresees death but does not intend it. This can therefore be used to understand previous paediatric end of life decisions. Keown argues that a distinction exists between intended consequences of an act and foreseen consequences of act, as certain12. A surgeon knows that surgery will cause post-operative pain. This differs from the surgeon, who operates in order to induce pain. Furthermore, the pain is not the means by which the operation will succeed, therefore foreseeing death is different to intending and knowing a side effect of an action does not prove causation. However, the law can only work when consequences of an action are assessed over the act itself13. Therefore, in the case of Indirect Euthanasia, the purpose of an act could reasonably be pain relief, however PE has no similar purpose that doctors could cite apart from death.

As foreshadowing arguments are unconvincing, there appears no reason why AS and AE are illegal. This complicates Paediatric end of life decision making, as what is often portrayed as beneficent terminating of suffering, is through studying ethical theory, technically no different to illegal and condemned acts of AE and AS.

Conclusion

End of life decisions are an ethical maze. The law is not morally consistent, with study of ethical principles showing inconsistencies. Furthermore, such discussion usually centres on adult patients, with little discussion on paediatrics. This summary only touches upon some of the issues in this argument, with topics of omission verses act, personhood, dignity and the weight placed on medical opinion by the courts all further areas that should be considered. What is clear is that although an increased understanding of ethical theory is useful for one’s own understanding, it does little to help the physician faced with a difficult paediatric end of life decision, as the more one delves into the theory, the more inconstancies and questions arise.

References

Santhakumaran S, Statnikov Y, Gray D, et al Survival of very preterm infants admitted to neonatal care in England 2008–2014: time trends and regional variation Archives of Disease in Childhood – Fetal and Neonatal Edition Published Online First: 07 September 2017. doi: 10.1136/archdischild-2017-312748

Dyer C. Doctors and parents agree care plan for toddler with terminal condition.

Robert Mendick. [Internet] The Telegraph: Charlie Gard court case: Parents have just 48 hours to prove untested, experimental technique works. July 2017, Accessed December 2019. Available from: https://www.telegraph.co.uk/news/2017/07/10/charlie-gards-parents-stressed-hopeful-ahead-new-court-hearing/

Mary MacLeod. [Internet] Great Ormond Street: Statement from Chairman of Great Ormond Street Hospital, 22 July 2017. July 2017. Accessed December 2019. Available from: http://www.gosh.nhs.uk/news/latest-press-releases/statement-chairman-great-ormond-street-hospital-22-july-2017

Dyer C. Doctors can withdraw treatment from child on life support, says judge. BMJ: British Medical Journal (Online). 2018 Feb 21;360.

Tripp J, McGregor D. Withholding and withdrawing of life sustaining treatment in the newborn. Archives of Disease in Childhood-Fetal and Neonatal Edition. 2006 Jan 1;91(1):F67-71

Re B (Adult: Refusal of Medical Treatment) [2002] EWHC 429.

R (Nicklinson) v Ministry of Justice [2014] UKSC 38.

Jonathan Herring, Medical Law and Ethics, (5th edn, Oxford University Press, 2014) 528

BBC Radio 4. Disability. Beyond Belief. 10/9/18. Available from: https://www.bbc.co.uk/programmes/b0bh431j [Accessed on 25/2/19]

A world without Down’s syndrome? 2016.

Jonathan Herring, Medical Law and Ethics, (5th edn, Oxford University Press, 2014) 520

Andrew McGee, “Finding a way through the ethical and legal maze: withdrawal of medical treatment and euthanasia” [2005] 357, 373.