Her father defined this initiative as inopportune and insensitive. For him, it was a “day of silence”.
I hope he will excuse me for taking advantage of this occasion to give some information which I consider proper and relevant as a doctor, although, as a surgeon, I am not responsible for the care of such patients.
I will seek to give my information in a way which abstains from partisan ideology or political viewpoints which cut through such a delicate discussion, using it as a political bargaining tool.
I will start from afar in order to be as clear as possible. With the Enlightenment, more than two centuries ago, a form of man was born who was equipped to be autonomous, capable of reasoning with his own mind, capable of self-determination, directly responsible for his own actions and behaviour, and, as such, there emerged a moral individual.
A man made in this way could no longer be satisfied (although it took some time to change) with the completely paternalistic relationship with his doctor who, from his privileged position of scientific knowledge, had once decided what should be done without consulting his patient. Above all, this man demanded a necessary dialogue to gain correct information on his state of health before choosing to consent to the proposed treatment. In this way, the now well-known “Informed Consent” was formed, thanks to people, still in ever growing numbers, who are able to understand that they have the right to accept or refuse the advice and treatment of doctors, whether they are right or wrong to do so. The right to treatment now yields to the right of individual choice, to their deep convictions, even if they are not always well reasoned.
At this point, it seems fitting to refer to those cases in which people find themselves imprisoned in their own bodies, due to a severe illness affecting their nervous system, unable to lift a finger or breathe on their own, but with a perfectly functioning brain. They are able to show their will, but have no way to act upon it. Through the caring treatment of health professionals and the affection of their loved ones, they are able to retain a particular type of life which is still worthy of being lived. Another person, in an identical position, might wish to die because the suffering has become unbearable. I believe that a civilised country should be able to help in both cases. And it is not about choosing between life and death, as some bullishly yell, but about respecting the individual’s will, when expressed independently and lucidly, to the very last moment. It is about answering a call for help which no one should ignore.
Can we speed up the process of Informed Consent becoming a patient’s sacred right that is accepted by all? In other words, is it possible for an adult to keep a document in their wallet, along with their driving licence and ID (a copy of which will also be kept with a family member, authorised representative, solicitor or all three), which attests to their choice to accept or not accept crucial treatment in the eventuality that the decision has to take place when their ability to understand and show their will is temporarily or definitively compromised? The answer is obviously yes and it is called an Advanced Care Directive or Living Will.
Let’s immediately remove one point of possible misunderstanding: until the state of unconsciousness is considered definitive, no Living Will can be held. Any doctor, as soon as they see a patient, is obligated to do all at his disposal to save their life. To do otherwise would be considered withholding treatment. I can give many examples, like a cardiac arrest, a stroke or brain trauma which can cause brain damage through lack of oxygen or direct injury, but which, with prompt intervention and modern medical equipment, the doctor has literally saved a patient leaving them with a good chance of good quality of life. I believe we can consent to call this Progress.
Unfortunately this is not always the case and despite all medical intervention a sick person can pass into a deeper state of unconsciousness, which can become permanent due to irreversible lesions on the brain. The judgement on the patient having reached this state is obviously made by the doctor resuscitating, assisted by other specialists with the assistance of the modern equipment at their disposal, so that there is no doubt about the meaning of “permanent”. What is the life of a patient in a permanent vegetative state? Generally, they are unable to breathe unaided and therefore they are constantly assisted through a ventilator applied through a tracheotomy. They are unable to feed themselves naturally, so they ingest liquids and solids through a tube. Cleaning their faeces and urine also requires repeated, through caring, manipulation of their body. But what characterises this deep state of unconsciousness is that it makes the patient completely unable to interact with the environment around them. Does it cause them pain? It shouldn’t, because physical pain can be combated. Do they suffer from a profound and indefinable suffering? We do not know, as no one returns from these situations able to tell us. Certainly, they are not well. They are in a state different from both life and death, which is entirely unnatural and completely artificial, a state which did not exist a few decades ago, but which is a creation of recent advances in the field of Resuscitation. Can we still call this Progress?
Those who have had the patience to follow me attentively until this point will have noticed how certain “appeals to the unquestionable respect for each human life” sound out of place and unreasonable. No one is against life, far from it, and even less so those doctors who have made every effort to save that life, but that life simply no longer exists! And the desire to prolong this state of being at any cost is, in my opinion, pure, useless and expensive medical persistence; not to mention the terrible family involvement and burden which these situations cause. From what we have already discussed, viewing food and hydration through tube feeding as something which cannot be renounced, as though interrupting it would increase the pain of death, really seems like nonsense to me. It is justified by the fact that those who write or say these things, although they do so without malicious intent, do not take account of the fact that feeding is only one of the many artificial means to maintain a state of being which, if it is to be interrupted, requires the thoughtful and gradual interruption of these elements. There is no sense in wanting to prolong a certain situation which is no longer a life, even if food and hydration are not renounced, but which continues to be an unconscious body poked and manipulated daily by the hands of strangers. I know that I am explaining myself in a harsh manner and that for some these words may seem unpleasant, but I am trying to avoid hypocrisy and misunderstandings. This is what a Permanent Vegetative is, even taking in account any small differences in cases.
It seems that the moment has come, after giving the information which I saw as opportune, to recommend to my readers, not to write their own Living Will until they have asked themselves one question: could I dispose of my own life? If the answer is no, the true Will cannot be made, because, obviously, we cannot make use of goods which are not within our own reach, but we can, instead,m always make a declaration in which we accept that our life belong to a Superior Will which wants our life to last until the last heartbeat. This is, of course, an opinion worthy of respect, although it does not pardon the throwing of insults at those who instead choose to interrupt the natural course of their life. Once again, I feel the need to state that the natural course of that life has already been interrupted by the doctors who have desperately sought to save it.
If my answer is instead that life is an asset which I can dispose of, Anticipated Care Directives can be reported in the document which we have discussed, in which the patient states what can and cannot be done should they find themselves in this situation. Here they can also define precisely what they mean by life and a life worth living. There are so many way this could be interpreted.
Will we ever have a Law on Living Will which finds points of compromise and which offers drafted guidelines shared by the majority of the public and which make the lives of doctors and medical staff easier? I don’t know and we have been talking about it for too long. Apart from the political class which should draw up the Law, there is also the problem of the medical class who still find it hard to accept the need to respect the will of informed patients. We can only imagine what their reaction to the anticipated will of an unconscious patient would be. Moreover, when it comes to the question of who should finally manage the ending of lives, only 10% of the public are in favour of doctor taking this role. A large majority prefer the idea of delegating a family member or trusted party. In favour of the doctor avoiding this role, it is said that that they could never take a servile position to a legally binding Will, as it would reduce them to merely following orders and thereby offend their professional dignity. I want to continue hoping that times will change to the point at which a doctor who is more cultured, comprehensive and helpful will accept to “fully take into account” the will expressed at an earlier date by a sick person who finds themselves no longer able to explain themselves, a doctor who takes full part in the onerous task of dealing with this problem and gaining the consent of those around them.
To conclude, whether or not a Law is made, I invite you all to write your Living Will as soon as possible, as I am convinced that the Englaro family’s living death would not have lasted seventeen years if a piece of paper written by Eluana had existed clearly stating her will.