Second question: are we still making decisions autonomously?

When we are ill, social and psychological factors make us less able to be masters of ourselves, leaving others to decide for us. But if we want to manage well our cancer care, it is advisable for us to keep our decision-making autonomy. Medicine, as it is today, asks the sick person to be dependent, to rely on experts who will think and decide for them following technical guidelines. This approach to health care is based on modern medical science that is more interested in the biological aspects of the disease than in the sick person’s life and is characterized by a complex organization of specialized professionals and hospitals.

 

This scientific, professional and organized form of medicine allowed us to make a lot of progress in the treatment of diseases and represents an extraordinary achievement. Nevertheless, in this kind of medicine the patient usually ends up loosing that autonomy that he or she would normally have: from the moment the person falls ill, he or she will become less and less the protagonist of the decisions that concern his or her life.

From decades it has been emphasized internationally that health does not only mean the absence of a given disease, that the health system should change and aim at the overall well-being of people (which includes psychological and social well-being, in addition to biological well-being) and that doctors and patients should collaborate to build this form of overall well-being. These are wonderful ideas that unfortunately do not always find application in the real world. A lot of effort has been made to give back a sense of autonomy to the patient but, in reality, to different extents, there is a tendency to make the person in care weak and subdued.

When we are diagnosed with cancer we tend to loose our autonomy because of psychological reasons in addition to the social pressures produced by the way the health system works. A decisive factor is fear. Putting ourselves in the hands of an oncologist whom we blindly trust or placing all our hopes in a specialized centre to take care of us are ways to free ourselves from fear. Rather than freeing ourselves from fear we should, instead, face our problem and deal with it in the best possible way.

Losing our ability to make decisions independently does not help us. If we want to manage well our cancer care, we need the opposite: we must gain the most independence possible, to the extent of being as autonomous as or even more autonomous than a person in good health.

We cannot hope that our treatment will be tailored to our needs if at the time of making decisions, whether they are small or big decisions, we are not present and we do not take part in the process empowered by a strong sense of autonomy.

There is another reason why our autonomy is important. Cancer care, particularly of some forms of cancer, is a difficult challenge for everyone, even for the best specialists. Both the patient and his or her doctor face problems that put them to severe test. Specialists know a bit more than patients, but no one knows everything that is needed know to manage a disease like this and no one can be certain on how is best to act.

An image used by Newton to describe the condition of scientists who study nature conveys this idea well: the scientists examine shells along the sea bank to try and understand what happens in the immense and boundless sea. When dealing with cancer, scientists and doctors face an immense and boundless sea with only shells in their hands. This idea can frighten us but it is much better to be realists and to be clear on the fact that, even if we know a lot, we know in fact very little.

In such a situation the most important things are: humility and the will to study, reason, compare and discuss ideas. There is no space for know-all men who think that they have all the answers and solutions on the first place. We must make sure that the decisions that concern us are made in this context of calm and open dialogue between people who focus on the challenge that cancer poses, rather than on the problem of their identity of experts.