“I’m in a jail cell that gets ever smaller”

Suffering from Lou Gehrig’s disease, Pedro Martínez believed in a dignified life and refused to accept dying in hospital, so arranged his own death at home

Five days before the date that he has chosen to end his life, Pedro Martínez's hands sit inert in his lap. For a man who describes himself as a lifelong anarchist, he seems tragically passive. But far from a symbol of his passivity, his limp hands are just another symptom of the spread of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

Pedro has fought hard against the disease, but has decided that he wants to end his life on his terms, in this case through assisted suicide in the form of a massive dose of sedatives. The 34-year-old has agreed to allow EL PAÍS to share his final days, which he is spending with friends and family. By the time this article is published, he will have died.

"When you can no longer look after yourself, you're not living a dignified life"
"I hope my case reopens the debate. What I am doing has to be made legal"

Pedro has had enough. ALS is a disease that attacks from within: it begins by shutting down use of the extremities, and eventually reaches the thorax, producing respiratory failure. There are some 4,000 people with the condition in Spain, and around 900 are diagnosed annually. The cause of the disease is still unknown, and there is no cure. It typically affects the young, and once diagnosed takes around three years to kill its victims. Pedro is approaching the final phase.

"The first symptoms appeared around four years ago. Pain, cramps... but I wasn't diagnosed until around two years ago. The truth is that the doctors didn't have a clue what was going on," he says.

Over the last two years, Pedro has lost the use of his arms and legs. A friend designed a contraption using a coat hangar that allows him to smoke: his partner Lola holds the cigarette that another friend has just rolled. All Pedro has to do is inch himself forward to take a puff. But the cigarette goes out as Pedro becomes more involved in the conversation, and Lola patiently relights it for him constantly.

Five days before dying, as with every day for the last two years, Pedro spends the day in bed, his legs no longer able to bear his weight. "I watch the television, because I can't even hold a book or magazine any more. I can't even turn the pages. Sometimes a friend reads to me, but I get tired."

Pedro says he is tired of being dependent on others for even the smallest actions. "When you can no longer look after yourself, you're not living a dignified life," he says resolutely. Pedro is lucky in that his friends and family have rallied round, and he has a constant round of company and people able to help him.

"To begin with, when I was first diagnosed, around six of us went to live in the countryside," he says. He now lives in a small apartment in the center of Seville, near the railway station. "It belongs to a member of my family, and the rent is very low," he explains.

The heating in the apartment is on high. "I get cold easily, I feel cold all the time," he says.

Pedro has had to make do during these final years on a pension of 509 euros a month. "We applied for dependency payments, but we've received nothing." Lola has taken on the responsibility of looking after Pedro, doing the shopping, cleaning the apartment, and bathing him. Friends help out.

Pedro's voice has now been reduced to little more than a whisper, and it is sometimes hard to understand what he is saying: the disease has now reached his throat, and he finds it hard to speak. Lola translates, laughing as she describes herself as an expert in "pedrology."

The loss of muscle control in the throat is making it harder and harder for Pedro to eat: it is painful to swallow, and dangerous. "I don't want to choke to death. There have already been a couple of near misses, because the food sometimes goes down the wrong way, to the lungs. It is also very tiring even to chew. I have to take things down with liquids, and that is also dangerous."

And so Pedro has decided to give up the fight. He has made a decision to end his life, as much as possible, on his own terms. He has had enough pain, enough suffering. He says that he knows he has just a few more months left at most, during which his condition will worsen, and that the only outcome will be what the medical textbooks call respiratory failure, meaning he will simply choke to death one day. He says he wants to live out his final days with some dignity.

"One has the right to have control over one's life. I have lived intensively. I have studied, I have lived on the road, I have been active politically. It's not about dying with dignity; it's about living with dignity, exercising control over one's life to the end," he says.

He is angry with the approach taken by the palliative care team that visits him, and who refuse to accede to his request to die on his own terms, in the same way that he has lived on his own terms. "They come here, and they say that I am not dying, although they know perfectly well that I'm not going to live much longer. They say that I'm not on my deathbed. They say that I should simply stop eating and drinking for a few days, and that when I go into a coma, then they can give me a palliative sedation: I threw them out of the house," he says angrily, Lola translating his hoarse whisper, his words barely audible as he tires from the effort of putting together a sentence.

"That is what is so terrible about this disease: it is like a prison cell that gets narrower and narrower every day. You can't even bang your fist on the table and storm out of the house when you get desperate," he says.

Pedro's last contact with the palliative care team at the Virgen de la Macarena hospital in Seville was on December 14. They visited him at home, and he repeated his request to be allowed to die now, rather than prolonging his suffering. "I'm not going to the hospital anymore. I'm not prepared to be put on a respirator. Why should I? So that I can last for three months rather than two? What I want is to go peacefully, and to end this suffering, to end the fear that I am going to choke with every meal I try to eat." Pedro says that as usual, his request was ignored.

A few months ago, Pedro says that he contacted the Right to a Dignified Death organization. "They have helped me enormously. The only reason that I have kept going up to now is because I knew that they were going to help me. Otherwise I would have ended this myself before now," he explains.

"The current legislation regarding the right to die doesn't cover cases like mine. It is basically about cancer. The doctors are trying to tell me that I'm not a terminal case."

Spanish law still regards euthanasia as homicide, which means that anybody who provides a person with assistance in committing suicide faces a criminal prosecution, albeit with the circumstances of the case taken into account. The outgoing Socialist government put forward a bill in Congress before the November 20 general elections, but it too fails to address cases like Pedro's. The draft bill says that if a patient refuses treatment their wishes must be respected, although doctors are obliged to offer alternatives. It defends health professionals who act in accordance with the wishes of patients, even if the outcome leads to an early death.

Five days before the day that he has chosen to die, Pedro has everything prepared. He has now come to terms with his decision. "I want to defend the use of legal euthanasia, or at the very least that assisting somebody in my condition to commit suicide is no longer a crime. I hope that my case reopens the debate on this issue, and that we can bring about change. What I am going to do has to be made legal."

Two days before the day that he will die, Pedro throws a party in his apartment. More than 80 people turn up. "It's like a wedding. Everybody here knows the decision that I have made, and they support me. This is all very emotional," he whispers, and then laughs: "My treat, well, actually, the state is paying for this," he says, adding that he has spent his last pension payment on the party.

The next day, a medical team from the right to die organization visited him. "We assessed his situation, and his suffering is unbearable. That is clear. Given that in his case there is no alternative, and with the patient's consent, we went ahead with the sedation," says the doctor who visited him.

Pedro died on the Monday, at his home, in his own bed, after saying goodbye to Lola, his friends, his family, and his dog. On Tuesday he was buried.

"When all this is over, I want to be cremated and to be buried under a walnut tree. Imagine a world where instead of cemetaries there were forests. At least that way death would have some use, and would help to fight deforestation," he says.

Pedro admits he has no idea about what comes after death. "It would be nice to think that we could return and learn something from our previous life. When we meet on the other side, and I hope that that moment is still a long way off, we'll find out. In the meantime, down with the state, and long live anarchy."

Analysis: a lacuna in the law

Pedro Martínez became ill, and subsequently died in Andalusia, the first region in Spain to introduce right-to-die legislation. But the law could not be applied in his case.

The region"s health authority argued that the law, introduced in March 2010, did not permit assisted suicide or euthanasia, which is how they interpreted his request to end his life after enduring motor neuron disease for nearly four years.

Pedro"s case shows that despite efforts to give us greater rights over the way that we die, the law is still largely unable to address the issue fully. It"s not that Andalusia failed; it"s simply that the cruelty of some diseases goes beyond the law, debates, and morality.

The Andalusian health authorities knew about Pedro"s case. The palliative care team at his local hospital visited him regularly and assessed his circumstances. They decided that what he was asking was against the law.

His condition was irreversible, there was no treatment available, and he would die within months; three factors that are essential in establishing whether a patient can be covered by right to death law.

But the medical team decided that he still wasn"t quite a terminal case. He would be, perhaps in a couple of weeks, maybe as long as a month, but not yet. So he would have to go on suffering a little longer.

The law gives patients the right to reject treatment, to be given palliative sedation when they are "in a terminal condition," as well as to demand that life support systems that are prolonging "a clinical situation without any expectation" are withdrawn.

Since the law was passed in March 2010, several patients with ALS - Pedro Martínez"s condition - have cut short their suffering thanks to sedatives applied by doctors.

Some have chosen to die at home with their friends and family, their books and personal belongings. Others have preferred to do so in hospital, with the doctors and nurses who have looked after them, and with a few close family members.

Pedro was not connected to any life support system, and there was no treatment for him to reject, and according to the doctors, he wasn"t yet a terminal case. According to him, his suffering was no longer bearable and he didn"t want it prolonged any further.

Andalusia"s right to die law is based on an idea: "the right to a dignified life cannot be restricted by an undignified death." In the opinion of the doctors attending Pedro, he hadn"t yet reached that point. He decided that he had, and acted on his decision.