Intended for healthcare professionals

Editorials

Alfie Evans and Charlie Gard—should the law change?

BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k1891 (Published 01 May 2018) Cite this as: BMJ 2018;361:k1891
Opinion: Alfie Evans and guerrilla warfare

Re: Alfie Evans and Charlie Gard—should the law change? The Pain Principle

One of the highlights of this editorial, is when Wilkinson and Savulescu wonder if the harm principle (HP) should be preferred to the best interest principle (BIP). Currently, courts apply the BIP to medical treatment decisions; but this is a too vague principle: both those who require to continue treatments and those who ask to stop them, use the BIP, though differently. Nonetheless, even HP is vague (what is harm?), since it is not based on objective and/or measurable parameters. Thus, if laws should be changed, I propose to base the end-of-life decisions on the HP, but using a measurable parameter, the presence or the unavoidability of untreatable pain/suffering, to acknowledge when to skip treatments from invasive to palliative (though never to euthanasia). I call it the Pain principle (PP): when we are sure that babies, with an extreme brain damage that makes them incapable of conscious relations, go through extreme untreatable pain/suffering, active treatments should be substituted with palliative care; of course, pain should be present or imminent; in the former case, pain can be measured (1) dosing stress hormones, eeg changes, or sympathetic activity; in the latter, it will be predicted on evidence-based observations. Treatments will not be withdrawn because of the disability of the baby, but because of his/her suffering that treatments provoke or cannot avoid. The aim is not to provoke death (death is not intentionally provoked), but to avoid pain (2). But lacking evident and untreatable pain, the baby’s right to life overrules any other principle; using other principles, e.g. to stop treatments because of a future disability, is stigmatizing disability itself, as the national Italian bioethics committee stated in 2008 (3). If this approach would have been applied to the reported British cases, both those who requested to intensive treatment, and those who requested of discontinuing it, would have found a common ground and hopefully an agreement. PP may be useful for future cases or to change present rules.

REFERENCES

1. Hannibal KE, Bishop MD. Chronic stress, cortisol dysfunction, and pain: a psychoneuroendocrine rationale for stress management in pain rehabilitation. Phys Ther. 2014 Dec;94(12):1816-25
2. Cuman G, Gastmans C. Minors and euthanasia: a systematic review of argument-based ethics literature. Eur J Pediatr. 2017 Jul;176(7):837-847
3. Comitato Nazionale di Bioetica. I grandi Prematuri. 2008. Available at the following URL: http://bioetica.governo.it/media/171398/5-pareri-29-febbraio-2008.pdf

Competing interests: No competing interests

28 May 2018
carlo v bellieni
neonatologist, PAV
University Hospital, Siena
via delle province, Siena (Italy)