Talk to MDMD in London 14th October 2017
How to Let Death become a Ceremony of Life
Dr Erika Preisig | President of Lifecircle in Basle
Slides available here
The room was full to capacity with attendees coming to London from as far afield as Scotland, Devon, and in the case of the speaker, Switzerland.
Dr Preisig started by saying death is “100% sure” in life, so it is strange to her that not everybody can talk about it. She has seen the wish for a peaceful death at the end of life expressed through both professional and personal experience in her work as a GP specialising in palliative care, and the experience of her father who had a quality of life that he found unacceptable following his second stroke.
Her father had tried to end his life by overdosing on pills, but all that happened was that he slept for three days and then woke up. He indicated through gesture that he would jump in front of a train to make things certain. Erika said that moment changed things for her. As a doctor, she had been opposed to medically assisted dying. Now she saw it as part of, not in opposition to, palliative care: there could be “a self-responsible way of living and a self-responsible way of dying”.
Dr Preisig worked for Dignitas for several years, and saw the relief it brought to patients. She set up her own organisation, lifecircle, in 2011, and believes that “when someone is promoting assisted dying, they should also promote life. Don’t leave life too early.”
When someone applies to Lifecircle, the initial focus is on their living will and promoting good quality of life. It is only later, when the patient feels truly unable to go on, that they can request a medically assisted death. The name Lifecircle comes from recognition that birth and death are both ceremonies within the circle of life. Erika’s father was comforted and happy at the end: he had a ceremony to celebrate his life, and two days later he died peacefully through assisted dying.
The end of life, Dr Preisig says, should be talked about openly. Baby boomers are used to self-determination, so it will be interesting to see if they will be the ones to bring about a change of law in the UK. We all want acceptable good health in old age, but once illness occurs the patient can find it is already out of their hands.
In the Netherlands, old age plus minor health complaints will not qualify a person for a medically assisted death, and the single biggest group for death by suicide is men in the 80+ age bracket. This “old age rational suicide” is more distressing for everyone than it would be to have assisted dying, where friends and family can choose to be there, just like choosing to be at the birth of life.
Two-thirds of those who have planned to have a medically assisted death never take it up. The one-third that do sometimes have to go too early in case they become too ill to travel. Dr Preisig says this is why she will keep fighting for legalisation in other countries: it would be far more humane to treat people in their own homes.
Switzerland is currently seeing “suicide tourism” in the same way women used to have to travel for abortions. Perhaps in the UK, the changes that prompted the 1967 Abortion Act can guide us in successfully making the case for medically assisted death.
Questions and answers
It was good foresight from Dr Preisig to allow for an extended Q&A session, as there were plenty of hands in the air and some excellent questions. These included:
Q: If you have made a living will and given a copy to your GP, how do you know that if you collapse the medical professionals won’t use CPR?
A: In Switzerland, the emergency services used to override it. The law changed in 2013 with patients given the right to sue doctors who ignore their living will, so it now tends to be respected. An exception would be that sometimes medical professionals will still treat if it is an unexpected event with a high probability that the person will recover to a good quality of life. [In the UK an advance decision to refuse treatment is legally binding on healthcare professionals to prevent treatment. For more information see our page on end of life planning.]
Q: What is the legal threshold in Swiss law for medically assisted dying? What about someone with Chronic Fatigue Syndrome, or a patient who has a living will and later develops dementia?
A: The patient must be of sound mind, the wish to die must be their own and of long duration, they must be able to explain why their medical problems have resulted in an unacceptably low quality of life. Old age is a permissible factor at Lifecircle: “Some people say you can reach 85 with nothing wrong with you, but this is not true” – cumulative small medical complaints can add up and be accepted as good reason.
At Lifecircle the patient is set up with a saline IV drip, which is attached to a device containing the lethal drug liquid nembutal (pentobarbital). You need to be able to show self-determination at the point of medically assisted death: stating your name and date of birth, where you are, why you are there and that you know what will happen when you open the perfusion. Patients are filmed so that it is clear that they have knowingly self-administered the drug. At Dignitas and EX International, the other two clinics in Switzerland, the process is the same except that the patient swallows the liquid nembutal rather than administering it through an IV drip. Dr Preisig prefers the IV method because it avoids any unpleasant taste or burning sensations in the throat. Patients will lose consciousness within one or two minutes of taking the drug, and die a few minutes later.
Conditions such as Chronic Fatigue Syndrome which are classified as psychological illnesses are “very tricky” because Switzerland doesn’t accept foreign nationals for psychological assessment. Dr Preisig says “this is why we need it in all countries” because your GP is best able to understand long-term conditions. There is an outside chance that a psychological assessment in the UK would be accepted in Switzerland but it is by no means certain.
Assisted dying is no longer possible once the patient is in a demented state. This is one of the difficulties because it means if you are in the early stages of dementia you have to decide to go early. Your living will does still have to be respected with regards to withholding treatment, so if you have clearly stated that you do not want to be fed, it is likely that nature will take its course as most dementia patients don’t want to eat. Further discussion clarified that in the early stages of dementia, once it has been formally diagnosed but before mental capacity is lost, it is possible to be accepted for an assisted death in Switzerland.
Q: Is support for medically assisted dying incompatible with holding a Christian faith?
A: Dr Preisig said she was brought up by Salvation Army parents, but by the time she was helping her father die he couldn’t speak and so they couldn’t talk about whether it was a sin. “I thought it was a sin and that I might be punished for it. But now I believe that, if there is a God, he does not reject what I’m doing.” Over the years, she has been accused of playing God but says “I’m not playing God, I’m just listening to the people”. She believes in a loving, understanding God who would see no difference in providing assisted dying or putting in a stent to prolong someone’s life – there is no reason why medical intervention should be accepted one way but not the other.
Q: How can we have a global campaign getting through to people that death is a part of life and it should be everyone’s choice?
A: The problem is that we have people most affected who are too ill to physically campaign, to stand up and say in a big group that they want this legalised. The cases of Omid and Noel Conway show how badly those who are suffering have to fight and they can’t physically do it alone. We have to do it on their behalf.