Once again the human stories of great suffering and pain, they pose in front of important reflections on the value of life and its meaning, as to why you decide to take certain paths. When you are hit by an illness, a severe disability, whatever it is, at first glance it seems impossible if not foolish combine it with the concept of health. Even more so if it is rare, little-known diseases and of which, at present, no known effective therapies to heal, or an oncological disease or chemo-sensitive or sensitive radio or even feasible for a surgical approach.
Sometimes, though, it can happen that a disease or a severe disability that humiliates and limits the body, even in a very obvious way, can represent a real medicine for those who have to live with it forcibly without the possibility of alternatives. Because the disease can really draw, for better or for worse, an indelible line in the life path of a person. Or, better yet, build a series of columns of Hercules, beyond which we can not go back, but if you want it, there is still allowed to look ahead. And this is the crux of the matter. When you’re lucky enough to intact and ensure the preservation of cognitive abilities, you can still think about what you can do rather than the one to which you are no longer able to comply. If you think in those terms, the disease can really become a form of health. It is healthy because it allows you to feel more useful for themselves and for others, beginning with their family to go with friends and work colleagues.
And it is healthy because it helps to realize that in life you do not take anything for granted, not even drink a glass of water without choking. Sometimes we are so focused on ourselves that we do not notice the beauty of the people and the things we have around for years, maybe forever. So when the disease is to stop abruptly, it may happen that their scale of values changes. And we realize that what we, until then, we considered the most important, however, were not so deserving of the first places. In these times when there is increasing discussion, with little clarity, the ‘right to die’, the self-determination principle of patient autonomy, you have to work concretely on the recognition of the existence of the dignity of every human being which must be the starting point and reference of a society that defends the value of equality and works to improve the health and disability are not or do not become criteria of social discrimination and marginalization. The pain and suffering (physical, psychological), as such, are neither good nor desirable, but by no means are meaningless: and it is here that the commitment of medicine and science must take concrete steps to eliminate or relieve pain in the sick, the disabled, and to improve their quality of life, avoiding all forms of aggressive medical treatment.
This is a valuable task that confirms the sense of our medical profession, not exhausted by the elimination of biological damage. Medicine, health and social services and, more generally, society, providing a daily basis of the answers to the different problems posed by pain and suffering responses ranging and should be implemented and strengthened and that the explicit denial of euthanasia, the assisted suicide and all forms of therapeutic abandonment. We doctors, health professionals in general, the institutions themselves, we have this great good fortune: to able to relate and to relate to the human suffering, but it can and can send and teach you a lot. You may or you must create the conditions for the abandonment of so many patients and their families. It is unacceptable to endorse the idea that some health conditions make it unworthy life and transform the sick person or the person with disabilities in a social burden. It is an offense for everyone, but especially for those who live a disease condition, this idea, in fact, increases the loneliness of the sick and their families, introduces the most vulnerable people the doubt of being the victim of a planned disinterest on the part of society, and promotes defeatist decisions. What is missing is an actual taking charge of the patient, the correct information about the disease and its problems, personalized communication and family sharing to ‘flatten’ the path of awareness in order to facilitate and actually implement these decisions shared during the progression the disease. You can not ask anyone to kill. A civilization can not be built on such a false assumption.
Because true love does not kill and does not ask to die. You must open a real discussion of what is being done to prevent the marginalization of people with severe disabling diseases and how much actually, at the moment, you are investing in the medical path, home-care continuity and health culture and issues related to disabling diseases and disability in a broad sense, wondering very sincerely if right from the increasingly obvious lack of qualified home care, adequate family support, networks of health and social services organized, solidarity, commitment and sensitivity on the part of ‘ public opinion ARISING fROM those conditions of suffering and neglect due to which some patients are asking to end his life.
We should be even we doctors to contribute, together with the institutions, to strengthen our country the assurance that everyone will receive treatment, care and adequate support. It must be ensured to the sick, the disabled person and his family all possible, adequate and proportionate form of treatment, care and support. The Italian Constitution, all laws in force in Italy, our Code of Medical Ethics, in addition to the Conventions on Human Rights and the Convention on the rights and dignity of persons with disabilities, affirm the dignity of all and the right to access to care. That’s why I think that a sick body can bring health to the soul, making it tougher stronger, more determined, more willing to jump with all of herself into what you want. The urgency dictated by a disease state can become a huge incentive to achieve considered unthinkable goals and apparently precluded the ‘previous life’. And I treasure what is written by Stephen Hawking: “Remember to look at the stars and not your feet … As difficult as life can be, there is always something you can do, and where you can succeed.” The disease does not take the emotions, the feelings, the ability to understand that ‘ “being” counts more than “do.” It may seem paradoxical, but a naked body, stripped of its exuberance, mortified in its exterior shines most the soul, or the place where the keys are present that can open, at any time, the way to complete in the best way the own life path. In all this the hope that define the comforting feeling I have when I see with the eye of my mind that path that I can lead to a better condition, it becomes my everyday tool.
* Doctor, sick with ALS and general manager of the Italian Drug Agency (AIFA)