“Without a dignified death you cannot have a dignified life”

(CNN Spanish) — “What defines life? What does it mean to be alive? Have we evolved enough to think that being alive is having a heart that beats and a body that is still warm?”; These are some of the questions asked by Paola Roldan, a 42-year-old Ecuadorian 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 decision from the Constitutional Court that could be a milestone in Ecuador and relate to the possibility of access to euthanasia, which is not currently possible. . .It is legal in the country. Last August, Roldan, who suffers from amyotrophic lateral sclerosis (ALS), took up this legal battle, which he defined – in a text sent to CNN – as “emotionally intense” to receive a dignified death. In form of.

Euthanasia – according to the RAE – is “deliberate intervention to end the life of a patient when there is no possibility of cure.” While for the National Cancer Institute of the United States it is “the intentional termination of the life of a person suffering from an incurable or painful illness at their request.”

ALS immediately knocked on Paola’s door

Paola Roldan was diagnosed with ALS in 2020 after enjoying a life she calls “profound, profound, wide and colorful.” She 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 the progressive degeneration of nerve cells in the spinal cord and brain. It is one of the most devastating disorders affecting nerve and muscle function”, according to Johns. Hopkins Hospital is defined as one of the most prestigious in the world.

In response to some, Roldan says, “I want to send a message of solidarity and hope to those who share this wait with me. This process has been challenging, but our perseverance is shared by our shared desire to live with dignity to the end.” represents.” The concerns he expressed were taken to CNN and sent in writing through his team.

Paola Roldan suffers from amyotrophic lateral sclerosis and hopes to gain access to euthanasia in Ecuador. (Credit: Courtesy Paola Roldan)

What does Paola Roldan’s lawsuit raise?

Paola Roldán filed a lawsuit before the Constitutional Court in August 2023 requesting the unconstitutionality of Article 144 of the Comprehensive Penal Code, which deals with simple murder and where the impossibility of being able to decide on the euthanasia of a person saved . Ecuadorian law establishes, “A person who kills another shall be punished with imprisonment of 10 to 13 years.” The lawsuit was accepted in September.

In Ecuador, a deeply religious country, Paola Roldan has sparked a wide-ranging debate between those who defend life despite the pain of incurable disease and those who believe that patients with a fatal diagnosis have the right to continue their lives or not. Can take decisions about. ,

“What Paola is saying is that I want to die well and do it not secretly but openly with my family, with a doctor, with the people I love and those consequences. “It’s going to be there,” jurist Farith Simon, one of the members of Roldan’s legal team, told CNN.

“What I experienced is painful, lonely and cruel”

On 20 November, Paola Roldán appeared at a public hearing before the Constitutional Court via Zoom, from her bed and holding her husband’s hand, where she explained her case and her wish to die due to her illness. Reporting judge Enrique Herreria heard their reasons.

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

“What I experienced is painful, lonely and cruel. However, I have not come to expose myself so that you will pity me. That would be unfair and would be re-victimization (…) This is not a dying fight, I know I am dying. It’s a struggle how to do it,” Roldan insisted to the court on the day of the hearing.

The Constitutional Court has no established time limit for ruling on the case, although Roldán 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 already won a big part of the battle. Although there are many people who are against it, there are much fewer than the voices in favor (…) The issue of autonomy, personal freedom and that it does not affect anyone else but him, is very evident in society. . As an authority, said Farith Simon.

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

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

Opposite position: attempt on life?

In connection with the case, arguments were presented before the court rejecting his request to legalize euthanasia. Several organizations and members of civil society, who defended the death as a natural consequence of the disease, indicated that the trial did not comply with legal requirements on the protection of life set out in the Ecuadorian Constitution and was considered a violation of life. “Efforts” are also being made. This goes against the dignity that Paola claims. He emphasized that life is not worth sacrificing and death cannot be considered worthless.

Paola Roldan believes that the debate on euthanasia is not easy, but she believes that not talking about it or not treating it is worse. He believes that the opposing opinions presented against his claim are respectable but his viewpoint concerns judgment rooted in the most intimate sphere of life.

Roldán says, “Although this reality makes us uncomfortable and I have deep respect for anyone’s opinion, now is the time to debate and make decisions from a technical point of view, while respecting the secularism of the Ecuadorian state.”

Farith Simon says that the arguments presented before 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 concept. However, many of the arguments are derived from religious beliefs and this is clearly revealed,” according to Simon.

a fight against time

Paola has been receiving parenteral nutrition for two years through a catheter that delivers nutrients to her heart because her stomach no longer absorbs them. She confesses that she fears dying from suffocation due to some accident caused by her illness. He says that his another fear is of not being able to speak again.

“Given the progression of ALS and the possibility that my ability to communicate will be limited in the short term, my particular case is pressing. The day I cannot express my wishes or am not allowed to decide when to end my life, I will cease to exercise my freedom, I will lose my dignity. You cannot have a dignified life without a dignified death,” Roldan insists to CNN.

For this reason, he believes that the Constitutional Court is facing a historic opportunity that will give not only Paola Roldán, but also others who suffer from a situation equal to hers or worse, a better chance in the future. Allows to make decisions about life and reduce their suffering.

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

Roldán’s legal team puts forward at least four requirements for access to euthanasia: the individual’s declaration of free and informed consent; suffering intense physical and emotional pain; Diagnosis of serious incurable disease or injury; Euthanasia performed by a professional.

A fight against time in which Paola hopes that death will not come before the decision of the Constitutional Court, no matter what its verdict is.