Article by Gianpaolo Sarti appeared on “Il Piccolo” on 6 April 2020 (freely translated by Pegasos Swiss Association) (click the arrows below to swiych pages and on + & – to zoom in or out) il_piccolo_english
The last journey together towards death: Arrigo and Monika’s choice of freedom.
After 55 years spent ‘as one’, the couple from Trieste decided to leave at the same time, in a light-filled apartment in Switzerland, with Frank Sinatra playing in the background and their three daughters in the next room. Hand in hand, asleep. “When me and my sisters entered the room and mom and dad had already passed away”, says one of the three daughters, forty-nine-year-old Raffaela, “there was no suffering in their faces. There was no pain. They had serene faces”. The clock says 12.07. It is February 24th. This is not a clinic room, but an apartment room. In Liestal, near Basel, in Switzerland. It is an accommodation rented by the ‘Pegasos Swiss Association’, a not for profit organisation that takes care of people who are looking for assistance to die – Voluntary Assisted Death. Arrigo Crisciani, 81, and Monika Schnell, 77, are lying on the bed. They are a husband and wife from Trieste. The illness Arrigo suffered from twisted their lives, there was no chance of him making a recovery, so Arrigo & Monika decided to leave together, after fifty-five years of total absolute love. “Their lives together were one thing only” Raffaela explains, “they have chosen a dignified end, desired with all their heart. It was a difficult choice. They wanted to die together at the same time, because for mom and dad, for one to live on without the other would have been excruciating.” Between paperwork, travel to Switzerland, tests and interviews with the Pegasos team, it took no more than two weeks and a payment of 20 thousand euros: 10 thousand each. This cost covers the use of the premises, professionals involved, the drug to be injected, the shipment of the ashes and the death certificate.
DISEASE AND END OF LIFE
Arrigo Crisciani, a former insurer, was terminally ill. For years he struggled with kidney failure and heart problems. He lived with five bypasses and a defibrillator. He was hypertensive and had widespread osteoarthritis that caused excruciating pain. He stood with difficulty. In recent months he had refused dialysis, which he considered to be an act of obstinacy. At night he could not sleep lying in a bed, he could manage it for only a few hours while sitting in an armchair. He was almost blind due to a domestic accident, which caused him to lose functionality of an eye. His wife, Monika Schnell, also had health problems. The seventy-seven year old, originally from Frankfurt, was a German teacher in her career. She was suffering from atrial fibrillation, had osteoarthritis in the hip and could no longer use one of her arms. Arrigo slept alone with the aid of sleeping pills. “The more he hurt, the more hurt she was”, says Raffaela. It was hard for Monika to assist Arrigo, he was a big man of 190 centimetres, when he fell to the ground, it caused much drama. “Daddy suffered a lot for the loss of his personal dignity”, reflects Raffaela. “Among my parents there was a fusion of their relationship. They had always said that for them, surviving one another would not have been an option to consider. Dad was in the terminal phase of his condition and Mum wanted to follow him”. The couple were registered both at Exit Italia and for years at Dignitas, in Switzerland, both associations that fight for a dignified end to life. Arrigo & Monika both supported the Luca Coscioni Association and they followed the public debate on euthanasia, especially after the case of DJ Fabo. “In the family they had always said that when the time came for them to leave, they wanted to go together”, resumes the daughter. “They had said it to friends and relatives, but they were also aware that, despite the political proclamations, in Italy it was hard for anyone to take the trouble to deal with such a delicate matter.” In January, when Arrigo’s health situation worsened, Raffaela contacted her two sisters. They live abroad, fifty-four year old Cristina in Germany and forty-six year old Stefania in Guatemala.
THE LAST MONTH WITH THE FAMILY
Raffaela, Cristina and Stefania spend the last month at home, in Trieste, with mom and dad. For Arrigo they ask for palliative care. The decision to die together has already been made by the couple, but it was still under discussion with the daughters. The sisters tried to propose to their mother, who would soon be widowed, different solutions. A nursing home, for example, or permanent home care. “In the end our parents spoke to us clearly”, retraces Raffaela, “they confirmed that their only will was that of going out together with dignity. They told us that their life cycle was concluded, they were happy with what life had provided for them, the love that had united them for fifty-five years, their children and grandchildren and the trips that they had made their passion. I must say that the last month spent at home in Trieste was intense. We cried, laughed and joked. We hugged each other, we cleared up misunderstandings. There we were saying “I love you” without embarrassment. I remember”, Raffaela concludes, “also a hug between the five of us, between daughters and parents. Mum and dad were calm and they said thank you for letting us go”.
SWITZERLAND
On February 5 Raffaela contacted Pegasos in Basel to ask if they would welcome both parents. Before doing this, after a request from her mother, the daughter wrote to the Luca Coscioni Association to check whether or not in Italy there was the possibility of contacting a facility, or an end-of-life accompaniment doctor. The answer was negative, it could not be done. “Despite the ruling of the Constitutional Court on the story of Dj Fabo”, Raffaela explains “we realised that in fact nothing has changed.” Now only Switzerland remains. On February 7, two days after sending the request to Basel, the family received an email from Pegasos. Yes, it was possible. The association asked for the medical documentation. The investigations began on the pair, even a psychological profile to determine their mental capacity to make such a choice. On February 20 comes the clearance from Pegasos. A date was set. February 24th – four days later.
TRAVEL
The sisters book the flight to Switzerland. It was not a simple trip for their parents. Arrigo struggled. The couple, accompanied by their three daughters, arrive in Basel on the afternoon of 23 February. In a hotel they met the president of the association and the doctor who would take care of the injection the next day. He is an anaesthesiologist whose other job is as a resuscitator in helicopter rescues. “This duality”, notes Raffaela “it struck me, a doctor who on the one hand accompanies people to a peaceful end of life and who on the other saves lives”. The head of the association and the anaesthesiologist asked Arrigo and Monika to describe their story and what they feel. “Then they explained to us in detail what the following day would entail, reiterating several times that if mom and dad had changed their minds, even at the last moment, there would have been no problem. They were free to step back if they wanted. In this case the money paid would be returned, withholding only the costs of managing the application to that point.”
THE APARTMENT AND VIDEO SHOOTING
On the morning of February 24 the family was accompanied by the doctor and the president of the association to the accommodation where the administration of the lethal drug, Nembutal, would take place. It was not a hospital, nor a clinic. “This also had an importance”, comments Raffaela, “because we entered a bright, comfortable environment.” They needed some time to complete the paperwork. Then it was time for the last moments together. Mum, dad and daughters were left alone in the living room. “When my parents felt ready they retired to an adjoining room, a bedroom”, recalls Raffaela. Before they started the final procedures the last act was a video recording, necessary for the judicial authority, where Monika and Arrigo declared their personal details, explained the reason for their choice and expressed their full awareness that taking the drug would put them to sleep and they would die. The couple were able to choose whether to take the medicine orally or whether to take it intravenously. The couple requested the IV drip, and asked to stay close to each other.
THE DRIP
Husband and wife were lying down on a bed in the bedroom, both with the needle threaded in a vein of the hand and with the drip next to it. Arrigo, who had spent many months at home wearing only overalls and slippers, was wearing a shirt and cardigan. In the breast pocket he had a little comb. Monika, an elegant woman, was in a beige suit with matching scarf. “That morning”, retraces Raffaela “I asked mum if I could keep her scarf as a momento, to still smell her perfume. She took it off from her neck and gave it to me.” There was silence in the room. The lights were dim. From the sitting room next door you could hear ‘My Way’ being sung by Frank Sinatra, a request from the couple. Arrigo and Monika took each other by the hand, for the last time. To activate the injection of Nembutal there is one wheel, sensitive to a slight movement. By law Arrigo and Monika, had to push it. (Swiss laws on assisted suicide demand only they can do this, nobody else.) And so it was. Sedation lasts 30-40 seconds. They fall asleep. Their hearts stopped beating after 3 minutes. It was a passage from sleep to death. “We, as daughters, had the opportunity to stay in the room”, Raffaela says, “but mom and dad had told us that that was a moment only for them. We then retired to the nearby lounge. When it was all over, we entered. We found them hand in hand and with a serene expression on their faces, they looked relaxed. It was important to me seeing them this way, it made me understand that it really was a totally painless passage.”
THE AGENTS AND THE MAGISTRATE
A magistrate arrived in the apartment shortly after, also a coroner and the police. “They were all very kind”, explains Raffaela. “They asked the required questions and checked the documents. As a final act, we had to choose whether to have their ashes delivered to home, or to have them dispersed in Switzerland. We chose to receive them at home in Trieste. There was no funeral, my parents didn’t want one. Rather, they asked us to raise a toast to them with all the family in their memory.”
AFTER
“Mum and Dad have asked us to think of them without sadness, to look ahead and to live our lives fully”, explains Raffaela. “Returning home we asked ourselves, among sisters, what emotional aftermath they could expect to feel after an experience of this kind. We never expected that there would be a feeling of inner peace. In this moment of mourning, we have the strength to remember parents with nostalgia, because we miss them, but it is a sweet nostalgia. There is no despair. In these days I see people who die alone on TV in hospital because of the virus… I think we have had the privilege of living a long goodbye, peaceful.” When the daughters went to their parents’ home after their death, they found a book by Umberto Veronesi, titled ‘The Right to Die’. Inside was a sentence from writer Luca Goldoni, underlined several times. It read: “We want to have the right to leave as soon as darkness comes, deciding now, when the light is still on”.