In January 2015, 57-year-old Simon Binner was diagnosed with motor neurone disease, and doctors declared him only six months to two years to live. On the drive home, Simon made up his mind: "I'm an independent person, and the end of motor neurone disease is not my style." I'd rather kill myself or die euthanized. ”
The most common type of motor neurone disease, known as "frostbite", also known as "amyotrophic lateral sclerosis", is a disease that progresses gradually and there is currently no reverse treatment. From the onset of symptoms, the median survival rate is 3 to 5 years.
In the same year, the BBC followed Simon's last 5 months of life, telling the story of a terminally ill patient who chose to end his life on his own in the documentary How to Die: Simon's Choice.
Simon Binner
In the summer of 2015, Simon wanted to end his life on his own
In June, Simon is raising a glass with friends to celebrate his 14th wedding anniversary with his wife, Debbie. In his wife's eyes, he was full of vitality like a little boy, and the two of them had walked hand in hand, climbed snowy mountains, laughed together, and walked through countless sunny days. The only thing that was different now was that Simon spoke more than twice as slowly, making it difficult to spit out clear syllables. Despite this, he still used a translator to make his grandson, wife and daughter laugh.
Simon is a humorous and quick-witted man who was the company's director of operations. He has always been the center of people's attention, always passionately motivating employees and drawing a beautiful blueprint for them. But the difficulty of composing the voice caused by the disease made it impossible for him to answer the phone and supervise the staff. Simon could only eventually pass on the company's affairs to someone else.
80% of patients with motor neuron disease first present with asymmetrical limb weakness, and 20% first present with dysarthria or dysphagia. The disease progresses gradually, affecting the function of nerves and muscles, eventually causing severe damage to the brain and spinal cord, and patients eventually die of respiratory failure caused by diaphragmatic weakness.
In the process, the loss of communication skills was unthinkable for Simon, who had mastered the Four Chinese. He decided to write everything down and chose a voice actor, who coincidentally was also named Simon. Simon Knock, 30, became the deliverer of Simon Binner's true voice.
Simon Knock, the protagonist Simon likes his strong voice and hires him.
On June 19, Simon sent an email to Dr. Erica in Switzerland, and the voice actress Simon said in a relaxed tone: "Please bring me a set of your acclaimed euthanasia services, the one that is different, rock and roll." ”
Simon is in the UK. Euthanasia and assisted suicide are both illegal in the UK so far. Euthanasia is considered manslaughter or murder, while assisted suicide can be punishable by up to 14 years in prison.
In July 2015, as the House of Commons of the British Parliament launched a vote on the Euthanasia Bill, there was a growing call for the legalisation of euthanasia, and opposition was not to be outdone – the Church opposed the artificial end of life, and religious doctors refused to "kill" with their own hands. More people are worried that once the euthanasia act is passed, the elderly and terminally ill people will be under pressure to choose euthanasia in order not to increase the burden on society and others. Those who hold this view argue that emphasis should be placed on providing social security, assistance and care to the dying to help them live better than to die.
British people taking to the streets
But Simon refused relief treatments that alleviated the pain and provided support. He wanted to choose an auspicious day to go to Switzerland and end what was left of his life on his own. There are three suicide assistance agencies in Switzerland that receive overseas visitors, and Erica is part of the largest of them: Dignitas.
Erica, who received the email, was driving through the foothills of Basel. She usually leaves the crowded city center before dawn and leaves the crowded city center before 8:30, passing through oily green fields and snow-capped mountains to a clinic on the outskirts of the city.
The floor of the clinic is covered with coffee-colored blankets and the walls are log-colored. Cartoon-patterned tissue boxes are laid out on red sofas, chocolate and cookie bars are stacked on plates under warm lights, and classical music CDs are neatly arranged on shelves in the corners. Here, Erica demonstrates the process of euthanasia.
The anesthetic drug used in the clinic was thirty times the usual dose, and the name of the drug was coded in the tablet.
Strictly speaking, the only thing that can be done in Switzerland is physician assisted suicide, in which the doctor provides the drug and the patient injects itself. Euthanasia, as we know it, involves doctors injecting drugs to end a patient's life, and is still illegal in Switzerland.
Clients who wish to engage in assisted suicide will first make an appointment with Erica by email and provide a doctor's explanation of their condition. When Erica receives the appointment, she works with another doctor to assess whether the client meets the criteria and reports the case.
On the agreed day, Erica will have her medicine ready. After retaining the patient's informed consent by filming the video again, the patient turns on the infusion switch by himself.
Until that moment, patients can choose to give up if they have any withdrawal or remorse.
Erica explains her work schedule this way: "The authorities usually ask us to start work in the morning, and once it's afternoon, it's four or five o'clock, and the patients start wanting to go home. ”
The initial idea turned into a tangible plan
For Simon's choice, wife Debbie showed a considerable degree of uneasiness. She is not a supporter of euthanasia and is filled with fear of the unknown death trip, which cost nearly £10,000. Two years ago, Debbie lost her beloved little daughter, Chloe. Diagnosed with bone cancer at the age of 15, Chloe pleaded with her mother for death in pain, but eventually spent the last peaceful and wonderful time of her life with her family with the help of analgesic relief therapy.
Chloe, who is still well-dressed and sunny in the late stages of the disease
Therefore, in the face of her beloved husband, Debbie, while knowing his pain, also saw that although she gradually became unable to drive and slow to move, Simon was still cheerful, humorous, charming, and enjoyed every time she spent with her relatives and friends. She couldn't figure out why Simon had been so determined from the start to end his life early. Wasn't his decision really a whimsical impulse under the torment of pain?
In August, Simon and Debbie went on holiday with friends in Freiburg, Germany, just 90 km from Erica's clinic. In an email to Erica, Simon mentioned that he wanted to book a "death service" on November 2 and wanted to meet her in advance.
November 2 is Simon's birthday, and the reason for choosing this date is that "there are very few people in the cemetery who have the same birthday and death day!" ”。 But this time, this naughty idea can no longer make fun of the people around you. The date meant that, although he had not yet met Erica, Simon had turned his original idea into a tangible plan.
Debbie couldn't suppress her worries any longer, and she asked Simon over and over again, "Have you really figured it out?" Won't you regret it? Are you only concerned with the development of the disease and the fragility that comes with it, and you can not see, you can actually eat, you can see and hear, and the pain caused by the disease is not only a solution to liberation. ”
Simon spoke more slowly and uttered more hoarse syllables than before, and despite his efforts to defend himself with gestures, his expression still appeared thin and feeble in front of his wife.
Simon spoke more slowly and emitted more hoarse syllables.
Erica received them. She sat across from Mr. and Mrs. Simon, her hair combed in meticulous braids behind her.
In this conversation, she did three things.
First, it explains the criteria for receiving applicants for assisted suicide in Switzerland: they are ill, mentally sound and have undergone a long period of deliberation. The latter two need to be evaluated through talks with the applicant.
Second, listen and clarify the full reason why Simon chose to do so. During the conversation, Simon mentioned some people who suffered but did not have a chance to achieve euthanasia, but they were different and had a choice. He was not afraid of death, but chose death.
Third, empathize with wife Debbie's feelings and respond to her doubts. Here, Erica's basic position is to fully respect the autonomy of terminally ill patients. When Debbie questions whether Simon's ability to make choices and judgments is affected by the pain, Erica's response is "he is not a child, he knows what he wants to do, this is his life, he is responsible for his own life", thus maintaining Simon's psychological dignity of making choices based on personal values and beliefs.
In the ethical defense of euthanasia, dignity and autonomy are at the heart of it. A study of euthanasia applicants found that reasons such as "loss of dignity", "loss of autonomy", "no longer able to participate in meaningful activities", and "loss of control of the body" were at the forefront, far outpacing reasons such as pain and burden on caregivers [1].
For Simon, the various parts of his body gradually disobeyed, he could no longer drive, play with his grandchildren, and even gradually lose his ability to communicate, be cared for as a child, and his personal opinions were no longer respected... These all make up
Inexplicable mental anguish. Respecting the wishes of euthanasia applicants, allowing them to make an independent choice at the last moment of life, leaving the world with dignity and comfort, can turn passive into active, pain into pleasure, and realize the mastery of the essence of life.
But the reasons why friends and family can't let go are equally important. For example, if the patient is regarded as emotional sustenance, or the concept of "filial piety for the elderly" in the mainland, it will tend to let the family make decisions for the patient.
Those who leave only need to experience a moment of happiness, while those who stay need to bear everything.
But Debbie listened, and she distinguished between her own will and Simon's will. In the end, Debbie is on the same footing as Simon's mother — love should accompany the person he loves to do what he wants to do.
With the date set, Simon felt content and relieved, and he felt closer to Debbie's heart. This was followed by a grand goodbye to his former relatives and friends, and Simon reminisced with his old friends at the classmates' meeting. Some were stunned by his decision, some were sad, and some were blessed.
And there are still two months left before he decides to leave.
He entered an eternal sleep
In September, Simon began to need to walk with crutches, it became difficult to bathe and dress, needed the care of a nurse, and stopped walking his dog. He often spoke with a gasp and could only communicate through writing. Debbie's increasing care and chores made Simon angry, and he became withdrawn.
On September 11, the House of Commons of the British Parliament rejected the Euthanasia Act, with nearly three times the vote against it. Debbie was affected and decided to take a closer look at the options for palliative treatment options.
Doctors told Simon and Debbie that with noninvasive ventilation and morphine analgesia treatment, patients with motor neuron disease can reach the end of their lives with less pain, while their lives are not unnecessarily prolonged.
The concept of palliative care was first proposed by British physician Cicely Saunders, who pioneered the practice of palliative care in London in 1967 when she founded St. Christopher's Hospice. Palliative treatments are provided throughout the end-of-life phase, while the dying person and his or her family are cared for. After the euthanasia is performed, the family of the deceased will leave some psychological shadows to a greater or lesser extent, and the palliative treatment will relatively bring them psychological comfort. Euthanasia is controversial, and palliative care is widely accepted in ethical, moral, legal and even religious terms.
Debbie's insistence made Simon feel that his wife cherished every moment with herself, even if in the end she "couldn't even wipe her ass." The nursing home staff also advised Simon to continue to live, which seemed to open a new window for him.
But the afflictions of the disease continue.
In October, Simon's fingers began to become numb, unable to write or type. This means that even his spokesman can no longer communicate with the world for him.
In mid-October, Erica received an email from Debbie: "We had a terrible morning. Simon tried to hang himself. He wanted to euthanize early. He wanted to die now. ”
After a small farewell party, Simon, along with his wife, sister and two best friends, took an early flight to Switzerland.
They spent their last night in a restaurant with crisp white tablecloths. Simon smiled happily, tasted the wine, and received praise and greetings from relatives and friends. He and his wife clasped hands and gazed lovingly at each other as if they were a normal birthday party.
At 9:37 a.m. on October 19, Erica drove to the clinic. Friends and family gathered around Simon. Before turning on the infusion pump switch, Simon clicked on the audio of the mobile phone, and the voice of the spokesperson came out, telling him endless nostalgia and love.
The word euthanasia, derived from the Greek word Euthanasia, consists of two words, beauty and death, which originally mean "happy death" and "death with dignity."
"We had a ten-month talk and said everything that had to be said. I know we've always loved each other deeply. The tide of time will not stop for anyone. I really love you, Debbie. Bye. ”
He turned on the infusion pump. Half a minute later, Simon's consciousness vanished. Four minutes passed, and he entered an eternal sleep.
Two weeks later, it was supposed to be Simon's 58th birthday and death day, a day of remembrance.
Debbie endured the trauma and grief of losing her husband. But perhaps, the sunshine after the haze cleared, rather than a long, difficult goodbye, was Simon's gift to her.
The book "The Best Farewell" mentions: "The battle to be a human being is the battle to maintain the integrity of life—to avoid being exploited, to be dissipated, to be conquered, to avoid breaking the present self from the past self and the future self that wants to be." Illness and old age make the battle hard enough, and the professionals and institutions we turn to should not make it harder. We are finally entering an era in which more and more people recognize that their job is not to limit people's choices in the name of security, but to expand the range of choices in the name of living a valuable life. ”
Perhaps one day, more people will be able to exercise their right to decide how they leave.
Note: Screenshots of the article are from the documentary How to Die: Simon's Choice
bibliography
[1] E. J. Emanuel, B. D. Onwuteaka-Philipsen, J. W. Urwin, and J. Cohen, “Attitudes and Practices of Euthanasia and Physician-Assisted Suicide in the United States, Canada, and Europe,” JAMA, vol. 316, no. 1, p. 79, Jul. 2016, doi: 10.1001/jama.2016.8499.
Author: Su Mu Zi Body
Edit: Li Xiaoqiu