The Biological Will is a written statement made by a person who is sound of mind, specifying the limits he deems appropriate to establish for medical treatment, should he be incapacitated to decide about his health due to the onset of a condition of disablement arising from a disease, with no reasonable hope of recovering intellectual integrity.
On this topic spotlighted by the Media, the 'International Congress on the Biological Will: an Intentionally Advanced Statement on Healthcare Treatments' was held in Rome in March.
Promoted by the Healthcare and Hygiene Commission based in Palazzo Madama, it offered a track for study, considerations, debate and confrontation.
The first day of work held on 29 March was moderated by the President of the Healthcare and Hygiene Commission, Ignazio R. Marino.
Human rationality has always clashed with the mystery of death and has painfully approached the idea of having to passively suffer the final events of life, which are irreparably and unequivocally removed from personal will. Despite being reassuring because it contributes to exorcise the fear of an inescapable end, the idea of even partly managing the moment of death places man before numberless anguishing queries, which demand a reliable response, at least from a purely legal perspective.

L.M.: Dear professor, it is a pleasure to speak to you once again as Senator and to have the opportunity to converse with you on such absorbing topics. I would like to define with you the most objective reasons you have encountered in favour of the Biological Will and the major objections, to take stock of the situation in a non controversial and qualified manner. Why have Bills in Parliament failed to take into account the Document drafted by the National Bioethics Committee on advanced instructions?
I.M.: I know the paper "Advanced Statement on Treatment" that was approved by the National Bioethics Committee (NBC) in 2003 very well. It was taken into account by the Senate's HealthCare Commission as a starting point to commence discussion and confrontations that have developed over these months. Moreover, some of the Bills in Parliament currently studied by the Commission almost entirely mirror its principles, especially the Bill in Parliament n° 773. I personally find that the paper drafted by the NBC enlarges on some valid and very useful aspects, which were of remarkable assistance in defining the key points of a future law on Biological Wills.

L.M.: You will agree that some points have still to be discussed.
I.M.: That's true: there are other points I do not fully agree with. In fact, I do not agree with the idea that doctors have the last word concerning treatment that must be administered to a patient during the terminal phases of his life, when a Biological Will has been drafted. What is the point of writing a document in which we specify our will, if, at the end, it is anyhow the doctor who decides for us? And again, I wonder what doctor would like to shoulder such a responsibility? I am speaking as a transplant surgeon who has repeatedly faced end of life situations too.
If there comes a moment when our scientific knowledge can do nothing more and the patient is kept alive by machines and drugs, which have by now become disproportionate, and reason, on the one hand, suggests that we should accept the situation, on the other hand instructions left by the patient will help doctors and relations make the most appropriate decision in the patient's best interest. It is never easy to surrender and accept the end of life. A good doctor suffers a lot at that moment and would rather not make the decision alone.
L.M.: Don't you think some form of basic cultural and psychological training is required to draft an Advanced Statement of a will on healthcare treatment to be implemented if soundness of mind and will power fail due to a disease?
I.M.: We must absolutely hope that a person who, sound of mind, decides to sign his 'Biological Will' will discuss the issue and seek the advice of either a trusted doctor or an expert.

L.M.: What is the Biological Will meant to guarantee, in practise?
I.M.: We must not forget that what we wish to guarantee with the Biological Will is the application of informed consent to patients who, due to either a serious disease or an accident, are not sound of mind anymore and cannot express their opinion concerning treatment they wish to either accept or not. This principle's very essence lies in being aware of treatments and their consequences, if any, in order to freely consent or not, in total autonomy and freedom. Today we cannot perform any diagnostic investigations, either medical or surgical, without the patient's informed consent, and this right must also be guaranteed to those who are unable to express their will. It is an inalienable right that is also mentioned in the Constitution.

L.M.: What does the patient who cannot decide autonomously really expect from Advanced Statements?
I.M.: What is undoubtedly expected is that this important document will guarantee and protect the patient's rights, even when he is unable to decide autonomously. The crucial point is respect for the patient's will and the person's dignity. By signing a Biological Will I will be certain that, in the final stage of my life, my wishes will be followed and my specifications concerning therapies and treatments I deemed acceptable and dignified for me while sound of mind, if I happen to be unable to express myself one day due to either a terminal disease or a serious accident, for instance. In fact, I believe that nobody reaching the last stage of life would like someone else to decide for him.

 

L.M.: How can all patient data be practically managed to implement Advanced Statements?
I.M.: In this regard, I think we can define two possible tracks. We could, for example, theorise a large national database that records all Advanced Statements of the will of those who decide to sign it. It would contain electronic records that healthcare facilities could refer up when required, to later know what course to take with patients who are not sound of mind. Or else, we could follow the United States' example: citizens sign the Biological Will, which, in some states, is certified by a solicitor.
It is preserved at home and the patient must see that it is given to doctors when required.
Furthermore, when a patient is admitted to hospital in the US, he is asked whether he has a Biological Will and, if he does not, he is offered the possibility of signing one.

L.M.: One final consideration, Professor, that takes into account the fact that human nature is not always inclined towards noble feelings, such as compassion and mercy, but rather focuses on opportunistic instrumental ends that are all but ethical and religious.
Hence, isn't a patient's therapeutic abandonment in the hands of relations, who, as the saying runs, are "serpents", very risky, when the person cannot "defend himself", being defenceless due to disease and pain?
I.M.: The 'Biological Will' will prevent the risk of so-called "therapeutic abandonment", because doctors will be obliged to abide by the patient's will.
This applies both to those who wish to apply all technological resources available to be kept in life, even through the use artificial devices, and to those who, instead, prefer to accept the natural end of life without resorting to all the technology available. As Prof. Thomas Starzl, pioneer of liver transplants whom I have worked with for over 15 years, keeps repeating, the existence of a certain technology is not an adequate reason to make its use compulsory.
Moreover, I hope the law will enable everyone to designate an executor for the will, a person (not necessarily a relation) who is associated with the one signing the Biological Will by longstanding affection-based relations, having shared moments, thoughts and ideas; a person who can thus understand whether the said party would have wanted to undergo further treatment or not in certain circumstances.
This important figure will guarantee the patient additional protection, besides the one ensured by the Biological Will. In this manner, the application of Advanced Statements and the interpretation of the latter's executor will ensure that every patient is guaranteed the right to the self-determination of treatment, a point we all deem essential.

L.M.: Obviously, Professor, Catholics consider life as an inalienable asset that belongs to God alone, even scientifically, though all technical tools prove the opposite.
I personally think that we have still no idea of what a patient feels while in a coma, hence there are questions nobody can still confidently answer.
Thank you, Professor, for this conversation, which, considering the topic's relevance, cannot however be deemed exhaustive.

 

Genina Iacobone