“The day my right is approved will be the greatest achievement of my life. Whether I use it or not… Although I think I will use it, because of how I feel.” When Ana Estrada says this in an interview with BBC Mundo, she is talking about the right a dignified death.
Ana Estrada is from Lima, Peru. She is 42 years old and has a rare, degenerative autoimmune disease called polymyositis: her muscles atrophy and swell until they lose strength. She is asking the state os Peru to enforce her right to euthanasia — assisted death –, but not to die now, but when she feels her body is no longer able to cope. Her request is unprecedented in that country, because euthanasia is illegal in Peru. However, Estrada is being supported by the Ombudsman’s Office.
Polymyositis began for Estrada when she was 12 years old; by 20 she was in a wheelchair. Despite the illness – “and with the help of my family”, she writes – she graduated as a psychologist and worked independently. A severe crisis associated to the disease stopped her autonomy in 2015. The muscles responsible for the respiratory movement were weakened. Estrada spent six months in intensive care. She ended up with a tracheotomy and a gastrostomy.
When she returned home, she was depressed and thought about suicide. She gave up the idea: “I would have been asking someone to commit a crime, and that was very distressing and very frustrating for me. ‘I wish I could do it and not ask anyone,’ I kept thinking. So in the end I decided no, I didn’t want to put anyone at risk,” she told BBC Mundo’s Pierina Pighi Be.
Then she started researching on assisted dying. “I was very frustrated that I couldn’t find an option to die.”
Today, Ana Estrada spends most of her time in bed, breathing through a tracheotomy or a ventilator. On the good days she can sit in her wheelchair for up to four hours. She relies on 24-hour nursing care; the nurses also help her replicate her words, since the tracheotomy made Estrada lose her voice, as Mirelis Morales wrote for Univision Noticias.
In January 2019, Ana Estrada started the blog “Ana busca la muerte digna” (Ana seeks a dignified death), in which she talks about her daily life with polymyositis. She inaugurated it with the following phrase, in her first post: “It is difficult to talk about death. It is even more difficult when it is about someone who needs to have the certainty of dying in order to live.”
In the blog Estrada shows how she is owning her body. Like in a personal diary, she writes about ordinary of her conditions, which could be invisible at first sight or given for granted. “What’s the first thing you do when you get out of bed in the morning? I, as much as I try, do not remember what I used to do when I could still walk alone. (…) It is a moment still between sleep and awakening of intimacy with yourself that takes shape when you finally get up and look in the mirror. That first encounter, that private ritual that may seem insignificant to you, is one of the moments I miss the most.”
Estrada commented to Mirelis Morales that she is surprised by the receptivity to her messages, because she counted on “a lot of rejection and indifference.” “Now the search for a dignified death has become my reason for living. I can fight for this right and not do it clandestinely. I want to leave a precedent. Otherwise, I would have been just another suicide.”
In September 2019, Estrada published a Change.org petition “to raise awareness in society in general and then to formally present myself to the state and proceed with the corresponding actions.” Nearly 14,500 signers back the letter.
“In time, the moment will come when I will lose the little strength I have left and become totally dependent on the ventilator, more prone to infections and pressure sores,” she warns in the petition.
The “corresponding actions” are being taken by the Peruvian Ombudsman’s Office, which has been handling Estrada’s defense since November for the application of her right to an assisted death, in a country where euthanasia is illegal. The Penal Code calls it “pious homicide”. In its article 112 it punishes it with prison: “Whoever, out of pity, kills an incurably ill person who expressly and consciously requests it to put an end to his intolerable pain, shall be punished with imprisonment of no more than three years”. And in its article 113 the code mentions “assisted suicide” and punishes anyone who gives information and resources to a patient to end his own life with up to four years of prison.
The Ombudsman’s Office, writes BBC Mundo’s Pighi Be, will introduce an injunction against the Peruvian Ministry of Health and Social Security for them to allow Estrada’s euthanasia. According to the official Ombudsman’s Office press release, they will also take up Estrada’s case before the national courts “to respect and ensure the free and informed will of a person to decide to terminate his life when under certain conditions, as in this case, their human dignity is seriously and irreversibly affected.”
Peru’s ombudsman Walter Gutiérrez says in the press release that the country’s Constitutional Court has already “recognized and developed” fundamental rights “intimately linked” to the right to a dignified death. “Among them is the right to dignity, to integrity, to a dignified life and to the free development of personality. An interpretation in favor of the individual makes it inevitable to conclude that the State must recognize, protect and guarantee the right of persons suffering from illness and suffering from a degenerative and irreversible disease to have access to death in dignified conditions.”
Ana Estrada reiterates the reasons for her request in the BBC Mundo’s interview: “I want to be in control of my time, of my body, to be able to choose when to die, because it is a matter of freedom of choice. The freedom to choose is a subject related to life for me. That’s why I say that, in a way, I’m fighting for my life, for the life I want for myself. I could also say I’m fighting for my death, but I’m not, because I don’t want to die now.”
Photo: “Ana busca la muerte digna” blog