In England, cases like that of Indi Gregory, the eight-month-old English girl suffering from a mitochondrial disease (a rare degenerative disease that causes very serious damage to the brain, liver, heart and muscles), which the London High Court wants suspending vital treatments because incurable are the order of the day and, usually, an agreement is reached between doctors and family members that allows life support treatments to be suspended, to continue with palliative care.
In Indi’s case, as had already happened for other English children (Charlie, Alfie, Archie), the parents’ opposition to the suspension of mechanical ventilation reached the court, starting a painful legal battle that also involved our country. who made himself available to welcome and care for the little girl while maintaining life support treatments. While waiting for the High Court of London to respond to the appeal presented by the parents which, if accepted, would allow the transfer of the little girl to the Bambino Gesù in Rome, we asked Alberto Giannini, director of the SC Anesthesia and Pediatric Resuscitation ASST Children’s Hospital Spedali Civili of Brescia and head of the Ethics Committee of SIAARTI (Italian Society of Anesthesia, Analgesia, Resuscitation and Intensive Care) to help us reflect, going beyond the emotional aspects and individual sensitivities, on the underlying issues of this complex and very delicate matter.
The limits of medicine
« What we should think about, as doctors and civil society, is the issue of limits, which in the West we often forget – says Giannini -. It’s a thorny topic that no one wants to talk about. We often exile this word and avoid asking questions or talking about “end of life” or “death”, imagining that ours is an omnipotent medicine. In reality, as an American bioethicist Kevin Wildes wrote, we live in a paradox: while medicine seems to offer infinite possibilities, the reality of clinical practice is instead governed by limits. This is something we doctors must remember and remind the community. We often have unreasonable expectations, while there is a limit of reasonableness (we cannot think of having an answer always and for every need), there is a limit of clinical effectiveness (even if every day we try to raise the “bar” with research) and then there is a limit of meaning: we must examine every action in the field of health and care to evaluate its meaning and acceptability also on an ethical level, a fundamental dimension of human action. In fact, what is technically possible to do is not always ethically acceptable. In reality, however, more and more often expectations regarding medicine are unreasonable and we do not consider these three aspects which decode and define the size of the limit.”
The proportionality of care
«And then there is the issue of the proportionality of care which is defined through the balance between the appropriateness of a care and the burdensomeness and burdens that this care imposes on the patient and his family – continues Giannini -. We doctors absolutely must do this very complex assessment. This is why it becomes limiting to think that the same treatments can be implemented automatically for everyone. From time to time it is necessary to think about the appropriateness and therefore the suitability of the treatment, its effectiveness, the probability of success, the durability of the result, its feasibility and its complications. And this is up to the doctor, or rather the team of doctors in charge of the patient, while the patient himself, or in the case of children, the parents must tell us about the costs of treatment. There is no way to know “a priori” the proportionality of a treatment but it is necessary to evaluate together, doctors and patients – or family members as in the case of the English girl – the best path. From an ethical point of view there is no difference between “not starting” and “suspending” life support treatment. Suspending life support treatment absolutely does not mean, however, carrying out euthanasia, it does not mean suspending treatment, it does not mean ceasing to take care of the person, but it means remodulating the treatments in a palliative key, starting from the objective awareness that medicine, in some cases it cannot heal but it can avoid or limit everything that can generate suffering.”
Decision-making processes in the medical field
«There are three levels of reference in decision-making processes in the medical field: those of a legal nature (what the community defines as lawful through a law), of a deontological nature (how the medical community regulates relations between doctors and civil society), of an ethical nature (also through the recommendations produced by scientific societies) – explains Giannini -. In particular, the Italian Society of Anesthesia and Resuscitation and the Italian Society of Pediatric Anesthesia and Resuscitation, over a period of twenty years, have produced recommendations and guidelines, and both have explicitly indicated that no one, not even a family member, can request treatment not considered “proportionate”. A non-proportionate treatment must not be implemented and, if it turns out to be such in a course of treatment, it must be suspended. There is total convergence on this issue. Law 219 of 2017 talks about not implementing “unreasonable obstinacy”.
Ethical reflections
«Returning to the case of the English girl, faced with a very serious and untreatable illness, if the clinical conditions are what we suppose, it is reasonable to think that a life support such as ventilation is no longer proportionate, and that therefore it can be clinically and it is ethically correct to suspend this treatment. A decision which, I would like to reiterate, does not mean carrying out euthanasia, but instead means changing the focus on the child and the treatment objectives – comments Giannini -. It is necessary to address the issue of limits and help the parents to understand that getting too aggressive would make no sense, while their presence next to the child makes great sense, accompanying her on the new treatment path which will have, as a new priority objective, that of removing the causes of the suffering”.
«Continuing on ethical reflections, there is a letter sent in 2017 by Pope Francis to the European section of the World Medical Association which said “Interventions on the human body are becoming more and more effective, but are not always decisive: they can support biological functions that have become insufficient , or even replace them, but this is not the same as promoting health. We therefore need additional wisdom, because today the temptation is more insidious to insist on treatments that produce powerful effects on the body, but sometimes do not benefit the integral good of the person”. Before him, Pope Pius XII, in a memorable speech addressed to anesthetists and resuscitators, stated that “there is no obligation to always use all potentially available therapeutic means and that, in very specific cases, it is permissible to abstain from them”. In my opinion it is therefore morally legitimate to renounce the application of therapeutic means, or suspend them, when their use does not correspond to that ethical and humanistic criterion of the “proportionality” of treatments”, comments Giannini.
Conclusions
«My work as an anesthesiologist and pediatric resuscitator leads me, every day, to have to make complex and burdensome decisions. Among the references that guide my work there is a text written by the American Society of Paediatrics which suggests that doctors ask themselves every day whether the care or treatments are done “to the child” or “for the child”. If the answer is “to the child” it means that it is something unreasonable, not proportionate. The only answer, honestly motivated, which authorizes us to begin or continue treatment can only be “for the child””, concludes Giannini.
2023-11-07 17:42:26
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