The following thinking is developed from a medical and human point of view, without any religious connotations or personal beliefs, which are absolutely respected. When it comes to illness or grief, each individual processes their pain and decisions in a personal way. When diseases are classified from the beginning as incurable, automatically, without being aware of it, we begin to live a grieving process that goes through all its stages: denial, anger, negotiation, depression and acceptance, each with a variable and individual duration. The human drama and pain caused by certain incurable diseases can only be understood by those who have experienced it up close.

Paola Roldán, a brave 42-year-old Ecuadorian, called on society to encourage us to think and feel the tragedy experienced by a patient condemned to death in a short time, due to a catastrophic, neurodegenerative and incurable disease like lateral sclerosis. amyotrophic (ALS). Diagnosing ALS at the beginning of the disease is not easy. Most patients have a history of symptoms of several months and several medical consultations and opinions before a neurological diagnosis is established. Talking about the problem with the patient and his family is necessary, although difficult and painful. It’s like issuing a summary death sentence. Although dying is a part of life itself, consciously facing the nearness of mortality is a task of resilience, especially when it comes to people who were young, healthy and strong until then.

The clinical course of ALS is different: it can vary from rapid progression – in a few months – to the need for assisted ventilation or it can have a slower progression that exceeds 10 years of survival (10% of cases). Despite constant scientific research and multiple clinical trials, so far there is no drug that significantly changes its clinical course or cures it. Within a few months, the patient loses motor function while being fully aware of what is happening until he completely loses autonomy and becomes dependent on others. In a smaller number of cases, certain cognitive functions are subsequently compromised.

Paola asks that the law allow her to decide how she will die. The suffering is not only hers, but also that of her family, who feel helpless. What will follow will be only pain: infections, ulcers, drowning. Many patients usually anticipate their refusal to intubate and, when the time comes, sedation and analgesia are usually administered, as in terminal cancer patients, so that the transition process (which can last hours or days) is “less painful”. If we refer to the latter, we are also talking about a “passive” form of euthanasia.

The decision to end our life is something intimate and personal that we should all respect. The right to die with dignity does not mean an obligation for those who disagree. Thank you Paola for taking us out of our comfort zone and making us think. (OR)