“You cannot live a dignified life without a dignified death”

(CNN Spanish) — “What defines life? What does it mean to be alive? Are we evolved enough to think that being alive is a heart that beats and a body that is still warm?”; These are some of the questions asked by Ecuadorian Paola Roldan, 42, for whom life has become a roller coaster and a constant challenge.

Roldan, who is married and the mother of a 5-year-old child, is awaiting a Constitutional Court ruling that could be a landmark in Ecuador and related to the possibility of accessing euthanasia, which is currently not possible. It is legal in the country. In August of last year, Roldan, who suffers from amyotrophic lateral sclerosis (ALS), undertook this legal battle, which he defined – in a text sent to CNN – as “emotionally intense” to achieve a dignified death.

Euthanasia – according to the RAE – “is the deliberate intervention to end the life of a patient without any possibility of cure.” While for the National Cancer Institute of the United States it is “the intentional termination of life of a person suffering from an incurable or painful disease, at their request.”

ALS quickly knocked on Paola’s door

Paola Roldan was diagnosed with ALS in 2020 after enjoying an “intense, deep, wide and colorful” life. He is currently 95% disabled and relies on a breathing machine, home nursing assistance, palliative care, and a hospital bed among other resources for help.

ALS is “a fatal type of motor neuron disease characterized by progressive degeneration of nerve cells in the spinal cord and brain. It is one of the most devastating disorders affecting nerve and muscle function”, defined by Johns Hopkins Hospital. The most prestigious in the world.

“To those who share this wait with me, I want to send a message of unity and hope. This process has been challenging, but our perseverance reflects a shared desire to live with dignity until the end,” Roldan says in his response to some. He addressed the concerns raised by CNN and which were sent in writing by his team.

What raises Paola Roldan’s lawsuit?

Paola Roldan filed a lawsuit before the Constitutional Court in August 2023 to request the unconstitutionality of Article 144 of the Comprehensive Penal Code, which deals with simple homicide and which protects the impossibility of a person being able to decide on euthanasia. “A person who kills another shall be sentenced to 10 to 13 years in prison,” Ecuadorian law establishes. The lawsuit was filed in September.

In Ecuador, a deeply religious country, Paola Roldan has sparked a wide debate between those who defend life despite the pain of an incurable disease and those who believe that terminally ill patients can decide whether or not to continue their lives. .

“What Paola is saying is that I have to decide whether to die well and not in secret, but openly with my family, with a doctor, with the people I love and the consequences that may come with them. Fear not because it is no more. “It will be there,” jurist Farith Simon, one of the members of Roldan’s legal team, told CNN.

“What I feel is painful, lonely and cruel”

On November 20, Paola Roldan, zooming from her bed and holding her husband’s hand, appeared at a public hearing before the Constitutional Court, where she explained her case and her wish to die because of her illness. Reporter Judge Enrique Herreria heard their reasons.

At the same hearing, various jurists, members of medical institutions and members of civil society presented their arguments for and against Paola’s lawsuit.

“What I feel is painful, lonely and cruel. However, I have not come to expose myself so that you will pity me. It would be unfair and victimizing again (…) This is not a fight to the death, I know I am dying. How to do that is a struggle,” Roldan insisted to the court on the day of the hearing.

The Constitutional Court has no established time frame for ruling on the case, although Roldan and his defense have acknowledged that the court shows sensitivity to the issue by scheduling hearings in a relatively short period of time.

“Socially, Paola has won a good part of the battle. Although there are many people against it, there are far fewer than those who are vocal in favor of it (…) The issue of autonomy, personal freedom and that it does not affect anyone but oneself, is very evident in society. As a right, said Fareeth Simon.

Roldan responded to CNN that he hoped the court would act with the same sensitivity in its ruling.

“This process has meant facing my own fears, reflecting on the quality of life and facing the medical realities that led me to this decision (…) During these days I have experienced a mixture of hope and anxiety,” says Roldan. Roldan says. .

Reverse position: Attempt on life?

In the context of the case, arguments have been presented before the court rejecting their plea to legalize euthanasia. Some organizations and civil society members who defended death as a natural consequence of illness suggested that the lawsuit did not comply with legal requirements on the protection of life set out in Ecuador’s constitution and was considered an “attempt” against life. It is against the dignity that Paola claims. They asserted that life is not expendable and death cannot be considered unfair.

Paola Roldan is sure that the discussion on euthanasia is not easy, but she believes that not talking about it or not treating it is worse. He believes that opposing views presented against his claim are respectable but his approach is related to a decision in the most intimate sphere of life.

“Although this reality makes us uncomfortable and I have deep respect for their opinions, it is time to discuss and make a decision from a technical approach, respecting the secularism of the Ecuadorian state,” says Roldan.

Fareeth Simon says that the arguments presented to the court essentially hide the religious background.

“Many of those arguments were presented in secular forms. They became secular arguments. Religion was not used as a word or a concept. However, many of the arguments are derived from religious beliefs and are clearly traced,” according to Simon.

A battle against time

Paola has been receiving parenteral nutrition for two years through a catheter that directs nutrients to her heart because her stomach no longer absorbs them. She admits that she fears death by suffocation or suffocation due to an accident caused by her illness. His other fear, he points out, is not being able to speak again.

Given the progression of ALS and the prospect of limiting my ability to communicate in the short term, my particular case is pressing. The day I cannot express my will or am allowed to decide when to end my life, I will cease to exercise my freedom, I will lose my dignity. You can’t live a dignified life without a dignified death,” Roldan emphasized to CNN.

For this reason, he believes that the Constitutional Court is facing a historic opportunity that not only Paola Roldan, but others who suffer from the same or worse situation than her, to make decisions about their lives in the future and overcome their suffering. allows.

“Paola can’t move, but she feels everything. Physically he feels all the pain. Not that he has lost sensitivity. It’s not just psychological suffering but real, physical suffering,” Simon explained.

Roldan’s legal team presents at least four requirements for access to euthanasia: declaration of the individual’s free and informed consent; Suffering from intense physical and emotional pain; diagnosis of serious terminal illness or injury; Euthanasia performed by a professional.

A battle against time in which Paola hopes not to die before the decision of the Constitutional Court, regardless of its verdict.