Antonio Luis Noguera Tejedor, Adjunct Professor of the School of Medicine, researcher of the Institute for Culture and Society of the University of Navarra and specialist of the Palliative Medicine Unit of the University of Navarra. Clínica Universidad de Navarra
How to look at suffering and death: a defense of palliative medicine.
Writing these lines I remember Fernando, one of my patients, one of my teachers. He was vital, energetic, cheerful. He used to tell me: "Palliative medicine is necessary. Since you have taken away my pain I am a person again, although I know that I can only aspire to certain treatments that give me a little more time to be with my wife and children". Fernando arranged everything so that his business and his employees could continue, he left his family well off financially, he saw his eldest daughter pass the university entrance exam and her driver's license and, one day, we even played in his room with a virtual reality device.
With relative frequency, the case of a patient like Fernando, who reaches the end of his life suffering from a serious illness, is brought to the public's attention , provoking a public discussion that remains in conflicting ideological positions. We argue and argue for ideological reasons, in a grandiloquent way, looking for concepts and ideas that calm our social conscience. In most of these situations we argue without having the necessary information to understand what is going on and we look to experts who are not at the patient's bedside to give an answer. But this way of looking at reality distances us from the person who, because of his illness, needs a human response, our support, good medical practice and, above all, our gaze.
As a palliative care professional, in front of my patients, I forget more and more my values and beliefs to be with that person with whom I want to be with until the end. I seek to help them close their life according to their values and wishes so as not to transform the words "give quality of life until the end, especially when it cannot be cured" into a cliché or nice phrase.
When someone asks me about euthanasia, the first thing that comes to my mind is not whether it is a medical act, but what right we want to legislate and what society we want to have. Among other things, I ask myself meeting with a question: do we want a society capable of caring or do we want to give a right to someone who cannot exercise it himself? Patients at the end of their lives, due to the physical limitations imposed by their illness, need to be helped in even the simplest actions. So where is their autonomy if it is someone else who has to end their life?
From my deepest respect for all positions, it seems to me that our duty as a society is to guarantee the right to fill with life the end of the people who have given us so much, to help them to close with dignity their life trajectory and , adapting to the limits that the disease places on them, to find hope and joy in the thousand small details that life offers them. On the other hand, we cannot forget their family and friends who, little by little, see how this loved one, unique for them, is leaving them. They also deserve that the road they still have to travel together is bearable and even beautiful, within the undeniable sadness that we will never be able to make disappear. Because they are going to stay, and the better the farewell, the better will be the memory of the moments that were lived, becoming a treasure for the rest of their lives.
In my experience, from a clinical point of view, it is not a matter of using all the science and technology at our disposal, but of using knowledge and appropriate means adapted to the benefit of a specific patient. And always be at their side, treat them naturally, because we health professionals are nothing more than human beings who approach vulnerable people with our science and our guts. Our role is to act as a catalyst for another person to take advantage of what is available to him or her to the end. I confess that, thanks to this way of acting, like many colleagues, I can say how many masterly lessons I have received from Chair, how to know how to live. Because when we help to live to the end, we receive life lessons.
My proposal is that, as a society, but also at an individual level, we learn to look at each person who leaves this life with respect, to look with affection, to look contributing our science, to look helping those who love and need them the most, to look in such a way that they continue to feel worthy. Because sometimes we look with fear, we look with anxiety, we look with anguish, we look without looking and then, what do we transmit with our look? You are a burden, you are a hindrance, you are a waste of time, you do not contribute, you only generate problems, it is not worth being like this, it is not worthy to live like this.
How do we want to look?
When the time comes, is this how we want to be seen?