- Lifecircle und Eternal Spirit:
https://www.lifecircle.ch/ueber-uns/gruendung-lifecircle/
https://www.eternalspirit.ch/ - One Swiss franc (CHF) is worth about 1 EUR, 1 USD, and 0.80 GBP.
- ASSM – “Attitude to the end of life and death” https://www.samw.ch/en/Ethics/Topics-A-to-Z/Dying-and-death.html (chapter 6.2.1: “Assisted suicide”).
Dr. Preisig: "Having the right to die can help us live"
Erika Preisig is a physician in the canton of Basel in Switzerland. In the course of her career, she has cared for over 700 palliative patients.
“Having the right to die can help us live”
“My father is lying on the couch, dead; his face, furrowed by wrinkles and scarred by life, is relaxed and peaceful. His head rests on his favourite pillow, on which a white stallion with its mane blowing in the wind gallops to freedom. He died at the beginning of the storm; by his own free will. His dearest wish came true.” - Erika Preisig
Dr. Preisig, how did you come to be involved in physician-assisted suicide?
It was a long journey, emotionally difficult. Little by little, I had to free myself from a gnawing sense of guilt to achieve the serenity that I enjoy today. This journey began with the death of my father.
Before helping him to die, I had already been a family physician for twenty years and had accompanied many patients in palliative care. Most of the time it went well, but I also saw people die in conditions that I would not wish for myself, with death rattles over several days. It’s hard for loved ones, and can you be sure this person isn’t suffering?
In 2005, my father was living at my house with my children. After a first stroke four years earlier, he had right hemiplegia. “If I can’t walk anymore, I’ll just learn to ride a horse”, he had declared at a grand old age in his 80s. And so, he did. Everyone tried to talk him out of it, but despite his disability, he managed to ride a large pony regularly.
But a second stroke made him aphasic. That was unbearable to him. My father was a sociable man. I can still see him desperately hitting his head with his big fist. One day I found him on the ground, comatose. He had swallowed all the medication in the house with a lot of wine. I began to have doubts. Why should a person suffer so much and be denied the death they so desire? Afterwards, he would show me train pictures. His intentions were clear: he was going to throw himself on the rails.
The Exit and Dignitas associations, which offer physician-assisted suicide (PAS) in Switzerland, already existed in 2005. For Exit, you had to have been a member for at least six months. My father would never have held out that long. Dignitas, on the other hand, explained to me that, since I was a physician, I could take care of the administrative procedures: writing a preliminary report and prescribing sodium pentobarbital. For me, this prospect was dreadful.
A colleague offered to help me. He came to my father three times, at length, and was able to confirm that he was not depressed, that he was capable of judgement and that he truly wanted to die. It was a huge relief for me not to bear the responsibility for “green lighting” my father’s PAS alone.
A few days before the PAS, at a religious ceremony held for my son, my father managed to make us laugh. He was relieved. Only one of my brothers and I knew that the PAS was already scheduled. Two of my children, teenagers, then realized that my father was considering suicide and that I would help him find a gentle way out. They were able to say their goodbyes, calmly, without knowing when it would happen.
On 3 May 2005, in his room, at my house, my father drank the medicine and then a sip of wine. He put his head on my shoulder and fell asleep.
Erika Preisig and her father, two days before his PAS
Did you start proposing physician-assisted suicide immediately after this event?
My father’s end was gentle but for me, the rest was complicated. I come from a very religious family. Since my parents were active members of the Salvation Army, I grew up in fear of divine punishment. For a long time after my father died, I was convinced that I would be punished, that my children would have an accident... I was having nightmares.
A year later, one of my patients’ wives called me. Her husband was suffering from metastatic carcinoma. Even though he knew palliative care was possible, he had just told her that he was going to kill himself. He was an army veteran, a very determined man. He had a gun hidden somewhere in their house. To save time, I promised him that we would find a solution together.
That evening, I went to their house; the husband told me in great detail how he planned to go about it – in front of his wife. When I asked him if he wanted to make his wife discover his mangled body, he cried, and I got him to delay a week. Dignitas agreed to organise the PAS quickly. That day, this man held his wife’s hand, told her “thank you '' loud and clear and drank the product. Then he added: “Soon we will be together again, I love you”.
These two PASs, my father’s and this patient’s, were peaceful and positive moments. I started working with Dignitas the following year.
After several years at Dignitas, you created Lifecircle and Eternal Spirit. What do they do?
I believe that before mentioning a PAS, we must always offer hope. This is the role of the Lifecircle association: if possible, to improve the quality of life of people who suffer greatly and to make them want to live. We refer them to appropriate palliative care or help them regain a little autonomy.
At the same time, we guarantee them the right to choose when they die. Knowing that they will be able to die the moment the suffering becomes unbearable takes some weight off their shoulders. And it is not up to a physician to decide whether this suffering is acceptable or not. It is not for me to decide whether a person who has become blind, who can no longer live that way, has the right to die.
About 50% of people who join Lifecircle eventually choose not to have a PAS. Of the people who apply to us from abroad, only a third come to Switzerland for a PAS. Those who maintain their wish for a PAS are referred to the Eternal Spirit Foundation, which is an integral part of Lifecircle. Therefore, this isn’t about opposing the desire for life and death but understanding that these notions are linked. Knowing that we have the right to die can help us live.
The most emblematic example of how entangled life and death are is, I believe, that of a patient with a locked-in syndrome. When I met him, he had no mobility whatsoever. However, for a PAS to happen, the person must at least be able to activate a small lever that releases the flow of the lethal product into the tubing alone. This man was begging me to make him die, but that’s something I’ll never do. I don’t want to kill anyone.
I encouraged this patient to start physiotherapy so that hopefully he would be able to move at least one finger. It took him three months. Then, one thing led to another, and thanks to his wife’s boundless support, he regained enough mobility to operate an electric wheelchair and use a computer. This man lived for another three years, at home, before dying of a cerebral haemorrhage. Knowing that we would be there, if he chose to die, allowed him to live on.
Another man also comes to mind. He came from the United States for a PAS. Before he went to sleep, he said to his wife: “You know, if there is another life, I will choose you as my wife again”. I believe that hearing this gives the survivor some form of energy to go on living.
In Switzerland, PAS is allowed in nursing homes. At first, I was afraid of some kind of “contamination”, that, seeing us do a PAS, the other residents would also ask to die. But as it turns out, not at all. Most people want to live!
The tool to open the perfusion
Lifecircle is committed to both suicide prevention and physician-assisted suicide. Isn’t that paradoxical?
There is no link between a PAS and the deaths that my father or the army veteran I mentioned had projected. “Violent” suicides often fail, leaving the person to suffer even more. As for the relatives, they find themselves faced with a brutal death, traumatising images, and substantial guilt. With PAS, they can accompany the person on their journey, sharing moments of affection that are both intense and soothing to the end.
What are the differences between Lifecircle and Eternal Spirit1 on the one hand and Exit or Dignitas on the other?
There were several things that I didn’t like when I worked for Dignitas. That’s why I left in 2010 to create Lifecircle and Eternal Spirit. First, as I explained, I wanted to give life a chance via Lifecircle before proposing death.
Then I wanted to dismiss any “PAS business” suspicion. Therefore, we chose statutes that incorporate a bi-yearly check of our finances. Lifecircle is not intended to make a profit. As for me, my income comes from my work as a physician and by no means from the PAS. This transparency protects us from any accusation of unethical conduct.
The conditions for carrying out the PAS are another major difference. At Exit or Dignitas, there is no caregiver present. The person must swallow the 15 mg of sodium pentobarbital alone. This product is very bitter, can burn the stomach, and even cause vomiting. The onset of action is slow: 2-3 minutes before falling asleep, and then another 30 minutes until death. If something goes wrong, as I have sometimes seen when I worked for Dignitas, the person can suffer, and it is this image that the relatives then live with.
Eternal Spirit practices a PAS which makes provisions for the presence of a physician or nurse. We offer either the oral route or the intravenous route, and 99% of the time people choose the latter solution. This also means that we can offer PAS to people who are unable to hold a cup or drink, which is very common in neurodegenerative disease cases. They only must be able to activate the lever that releases the tubing. They can do it with their finger, their head, or even their tongue. The product is effective much faster intravenously, the person falls asleep peacefully in 30 seconds, and cardiac arrest occurs after a few minutes.
My last reason for leaving Dignitas was that I wanted to be more committed to the legalisation of PAS in the world. Every year I attend about 80 PASs with Eternal Spirit. I could accompany many more, but I want to set aside some time for campaigning. This fight is close to my heart.
Why are you campaigning for the worldwide legalization of physician-assisted suicide?
I have no reservations about assisted suicide, except when it comes to “suicide tourism”. However, 80% of the people we accompany for a PAS come from abroad. I have seen too many people come from so far away to come and die in Switzerland in inhumane conditions. No physician would agree to a patient in this condition being transported. But these people had no choice.
I went to London, to the bedside of a very wealthy man, a quadriplegic since a car accident. When I tried to put my hand on his hand, covered with cotton wool, he screamed. He suffered from an extremely painful neuropathy: as soon as he heard the footsteps of caregivers coming to mobilise him in the hallway, he would start screaming. He would only stop when they left. And this happened every two hours.
In this man’s case, his daughters had to take him to the airport by ambulance, transfer him to a private jet, and then move him again to an ambulance to go to Eternal Spirit’s apartment. It’s inhumane. Inhumane. It doesn’t make any sense. When he died, he was extremely grateful. But I wish I could have helped him die over there, in his own home.
Fortunately, things are changing. In the United States, twelve states practice PASs, but only for people who reside there. Recently, Oregon can offer it to people from other states. Colombia has also just authorised physicians to assist with a voluntary death, a first in Latin America.
Anglo-Saxon countries are more advanced in this domain. PAS exists in Canada, New Zealand, and five of the six Australian states. In Europe, Spain, Austria, and Germany are leading the way, although in Germany the legislation is not yet perfect. England and France are lagging.
Two French people are waiting to die in Switzerland right now. They would like it to be done as soon as possible. One suffers from Charcot–Marie–Tooth disease, the other from Huntington’s disease. They were both refused deep and continuous sedation until death despite their cramps and pains.
I also helped a woman from the south of France whose husband and three children are physicians and assisted her with a PAS. One of the children works in palliative care. I know that this family supports my fight. I wonder: “Why? Why are people still denied the right to die in countries that have legalized abortion?”
How do you link physician-assisted suicide and euthanasia?
I would like for every person on Earth to be able to choose their death. We are far from it: even in Switzerland, only 1.5% of people who die chose PAS. I wonder in what conditions others die, in hospitals or nursing homes. I hope those are gentle deaths.
On the other hand, I am opposed to euthanasia. With PAS, the patient is the one taking responsibility: the physician guarantees that it goes well but does not intervene. Medical professionals should not decide if a life is no longer worth living. If physicians can do the injection, how can we be sure that it genuinely was the ill person’s wish?
However, I would still link PAS and euthanasia in two ways. Firstly, in the Benelux countries where euthanasia is legal, the death rate from PAS reaches 4 or 5%. Induced death is more accepted there.
Secondly, I am convinced that you should never force a physician to practice either one. I had a hard time getting used to PAS. Had my father not died this way I would still only be doing palliative care.
What are the stages of physician-assisted suicide?
For Swiss patients, PAS usually takes place at home. They can choose to come to Eternal Spirit’s apartment in Basel, but only when a loved one is going to continue living in the house and does not want to associate it with death.
There are always two consultations in the days preceding the PAS, with two different physicians, 24 hours apart. It is essential to share responsibility in this way. If one of the two opposes the PAS, it does not take place. The first physician is tasked with prescribing sodium pentobarbital.
The day after the second consultation, at 9 a.m., we are by the person’s side, with their relatives, and put the venous access. Then, for legal reasons, we start filming.
We ask the person for their name, date of birth, and the reason for their presence with us. They then must tell us what will happen when they release the IV clamp. These four questions prove their capacity for judgement. We stop filming when the liquid begins to flow into the tubing. What happens then is only for the relatives to witness.
Then we call the police. The medical examiner comes to certify the death and the absence of signs of violent death, such as strangulation. They must undress the person. This is the only limit to the intravenous route: the forensic examination is more extensive. Forcing someone to drink a lethal solution leaves a mark. This is when the coroner must make sure that the person released the IV clamp themselves.
This procedure is cumbersome and isn’t very respectful. In my father’s case, there had even been an autopsy, and that’s something he would have refused. That’s why we film the PASs: we hope that one day this forensic procedure will be simplified. Once I requested that a police officer attend the beginning of the PAS, to attest to its legality. But that isn’t possible because the statutes of police officers indicate that they must stop suicide at all costs.
Is the procedure the same for people coming from abroad?
The steps are the same, but we study the person’s medical file very carefully ahead of time. We will talk to them remotely for months. Imagine if a person were to come from the other side of the world hoping to have a PAS, and one of the physicians objected... That would be a disaster. When a date is set, the person arrives in Basel 48 hours before the PAS and from that point on the procedure is identical.
What about those who suffer from mental disorders?
This case is complex and has gotten me into legal trouble. Six years ago, I was accused of murdering a very old Swiss lady. She had been in a psychiatric ward for three months and had been diagnosed with depression. I talked with her son, the head of the nursing home where she was staying, and her concierge. But I couldn’t find a psychiatrist to assess her sense of judgement.
I was tried for voluntary manslaughter, at the Public Prosecutor’s Office’s request. I was facing five years in prison. In the end, I was sentenced to a 15-month suspended prison sentence and fined 20,000 francs (note2) for violating the therapeutic products act. I can continue to practice assisted suicide, but I am prohibited from prescribing sodium pentobarbital to patients with mental disorders. That’s not all: the prosecutor’s office has appealed, and I will be retried by the Federal Court, the highest judicial body. I’m very nervous. In the meantime, I prefer not to attend PASs anymore, and a nurse takes care of it.
When a person with mental disorders wants a PAS, the question is whether their disorders affect their judgement. For dementia caused by neurodegenerative illnesses, the situation is clearer. A neurologist regularly checks their ability for judgement, with an increasing number of tests. They bear the responsibility of telling the patient that the time has come to carry out the PAS, that beyond that point they will no longer be able to answer the questions asked on the day.
Regarding psychiatric disorders, the judges overseeing my case pointed out that self-determination “also applies to people with psychiatric diseases”. I concur. PAS should be allowed if, despite care, a person feels that they are suffering too severely from schizophrenia, bipolar disorder, or severe depression. In cases like these, one can draw a parallel with an incurable somatic symptom disorder.
The current difficulty is that psychiatrists refuse to assess the ability for judgement. During my trial, the charges were based on a psychiatrist’s report. Fortunately, after hearing the testimonies of other caregivers and relatives, the judges asked to see the video taken on the day of the PAS. This person’s will to die and her good judgement were obvious.
Most people who contact Eternal Spirit are foreigners. When they suffer from mental illnesses, we can’t help them.
What happens if a couple asks to die together?
This is a frequent problem: one is very ill, and the other has only age-related comorbidities. They both want to die together. I was faced with this case at the very beginning of Lifecircle. The man was terminally ill, but his wife was as fit as you can be at 80. They had known each other since kindergarten. Even back then, they proclaimed they would spend their lives together.
Exit had refused their request for a simultaneous PAS. The woman simply told me: “You know, if you decline my request, I will commit suicide right after. I know you can put me in a psychiatric ward for six days, it’s okay, I’ll kill myself right after that.” The man was seeing a psychiatrist. I asked his wife to meet with him to provide me with a certificate attesting to her good judgement.
On the day of their PAS, we made a mistake. The Eternal Spirit’s apartment only had a single bed. I wanted to put a deckchair next to the bed for her. They laughed and she told me: “Mrs Preisig, the first time we had sex it was in a little bed like this, it will do just fine.” They release the clamp on the IV and that’s how they died, clinging to each other as they once had in love.
The Pierre Beck case was a turning point in the perception of this type of request. Can you explain it to us?
My colleague Pierre Beck, who was the vice-president for the Romansh branch of Exit Switzerland, was also charged. He had prescribed sodium pentobarbital to a healthy 86-year-old woman who wished to die at the same time as her sick husband. Two years earlier, Pierre Beck had been deeply shaken by the suicide of a man who had been refused a PAS by an Exit physician. As soon as his wife died, the husband left the room, went down to the cellar, and shot himself in the head.
In 2020, Pierre Beck was first convicted, by two different courts, for violating the Swiss code of medical ethics. The Federal Court overturned this conviction, considering that in this situation, one could not be punished for providing medicine to a non-sick person.
Indeed, according to Swiss law, only assistance to suicide motivated by a selfish motive is reprehensible. Legally, Pierre Beck could have given this lady a rifle and taught her how to shoot. In our Criminal Code, whether one is a physician or any other profession does not change a thing, nor does the means used. So how can a physician allowing a gentle and safe death be condemned?
In the end, Pierre Beck was referred to the Court of Justice of the Geneva canton, and the case was retried under the narcotics act.
Of all the people you have accompanied, which ones struck you the most?
Paradoxically, of all the upsetting situations that I have been privy to, I can mention two in which the PAS did not take place. They date from before Lifecircle.
I remember a woman who had lung carcinoma. She was in a lot of pain and wanted to get a PAS. Her husband was deeply religious and was against it. Despite palliative care, the agony lasted for several days. In the end, he begged me to inject her with a lethal dose of morphine, or that I have Exit come over. It was too late because the patient’s consent could no longer be obtained.
The other situation is also related to religion. A Catholic priest who was very advanced in years was severely handicapped by major visual and hearing impairments. He had no incurable pathology yet he wished to die. We refer to this as a “balance-sheet suicide”.
His daughter – he had been married before joining the Orders – took great care of him and agreed to bring him to Switzerland. Deep down, I was convinced that it was too early for a PAS. He was resolute. Yet two days later he had changed his mind.
This priest told me that he had had a “divine inspiration” while praying in a chapel shortly before his PAS. He had come to Switzerland not to die there but to tell me that God valued my work. Now his mission was accomplished, he could go home, knowing that he could come back later for the PAS.
What is the Swiss physicians’ position concerning physician-assisted suicide?
When a patient applies to their physician for a prescription for sodium pentobarbital, only 30% of them agree. Several colleagues within Eternal Spirit take consultations and write these prescriptions, but I am the only one who agrees to be present on the day of the PAS. For the time being, I don’t have a “successor”. At Exit, which claims more than a thousand PASs a year, there is never a physician present. This is a good representation of how this debate troubles the medical world.
The Swiss Academy of Medical Sciences (ASSM) is among other things responsible for issues related to medical ethics. They develop the guidelines regarding medical practice. The ASSM used to have a rather restrictive position on the PAS, but the arrival of a new president in 2016 changed everything. He was a professor of anaesthesia and intensive care medicine.
In 2018, the ASSM drafted new medico-ethical guidelines: “Attitude to the end of life and death”. This text specifically stated that when a person believes that their suffering is unbearable, they have the right to ask to die. The FMH [Foederatio Medicorum Helveticorum, the Swiss medical association] deemed that the two chapters devoted to physician-assisted suicide went too far and refused to incorporate these guidelines into its Code of Ethics. This lack of clarity unsettled many colleagues.
A new version of the ASSM guidelines (note3) has just been approved by the FMH [19 May 2022]. This text specifies that the physician’s duty includes neither proposing a PAS nor performing it, and that it is not a medical act but that it is admissible from a legal standpoint, and “justifiable from a medico-ethical standpoint” under certain conditions.