What would you do if someone you loved told you they wanted to die?
John Broaders, a 55-year-old London man, had to face this when his long-term companion, Erich Schenk, a Swiss national, was diagnosed with Motor Neurone Disease (MND).
The disease robs you of control of your muscles. Quality of life deteriorates until you are bed-bound and paralyzed. Death, when it comes, is usually due to the muscles controlling your major organs – lungs and heart – failing.
In most countries, there is no legal right to medical help to end your life – save for specifying you do not wish to be revived in certain circumstances.
In England suicide is not a crime, but it is illegal for someone else to encourage or assist you.
One of the few places in the world where euthanasia is legal is Switzerland – which is where Erich lived.
‘I’ve always said he’s my companion … It just fitted and worked for us’
John and Erich met 24 years ago. They never lived together but enjoyed a long-distance relationship that included frequent trips between the two countries.
‘I’ve always said he’s my companion. I didn’t call it an open relationship – it was just more a sense that we were always together. It just fitted and worked for us,’ says John when I talk with him at his home in the Barbican, London.
It was on a visit to Zurich in December 2013 that John first realized something was wrong.
‘Erich [then aged 60] was a very strong swimmer. Usually he would swim for 45 minutes, but on this occasion, he only swam a couple of lengths and had to stop. He said he couldn’t catch his breath.’
After months of medical tests, doctors finally diagnosed Erich as having ALS (Amyotrophic Lateral Sclerosis) – a common form of MND. Erich was having difficulty breathing because the disease was affecting his diaphragm.
‘That was the thing with Erich. Because he still looked OK, and was still managing to get around, I don’t think some people really took on board how serious it was.’
But MND is always serious. The progression, whether slow or fast, leads to one conclusion. Erich was told that he might live up to four years, and was under no illusion of how his life would deteriorate.
He decided he wanted to take control of his death and told John he wanted to make use of Switzerland’s euthanasia laws.
A limited number of Swiss clinics accept patients from abroad for end-of-life assistance: the most well known being Dignitas.
However, some right-to-die services will only aid Swiss citizens. Erich chose one such service: Exit, an organization that will perform its duties, via a trained attendant, at a client’s home.
‘That was very hard for him – having to give the animals away’
John spent the bulk of 2015 with Erich. The two of them were determined to try and derive as much enjoyment out of Erich’s remaining time as possible.
Erich, who had previously worked in offset printing industry, continued to swim until last winter, but then began to go downhill. When he moved around his house, he was bent over and reliant on walking sticks, and he needed a mobility scooter to travel any distance outdoors.
‘He was an amateur biologist and had a menagerie of extremely unusual animals. He had tortoises, snakes, rats … you name it, and he had it. We knew that part of his life had to be dismantled. Other things could be handled after he was gone, but he wanted to know where his animals were going. That was very hard for him – having to give the animals away.’
It was at this stage Erich decided to speak to Exit. By coincidence, the Exit attendant they assigned to him – a former nurse – was also gay. So as not to identify him, we are simply referring to him as ‘H’.
‘H thankfully spoke fluent English. He came armed with lots of paperwork and information, and was able to fully explain everything.
‘There are a lot of forms and a lot of things to be taken care of. They also have to make sure that Erich wasn’t depressed. You can only assist someone if they are in the right state of mind and not merely wanting to take their life because they’re depressed.’
The police are also notified in advance of what’s going to happen.
‘I’m not at all scared … I’m just worried about leaving you behind.’
After medical practitioners prepare detailed reports about a patient’s state of health, and the person concerned has signed affidavits that they wish to die, Exit can be given just a few days’ notice of when someone wishes to end their life. There is no question of someone being rushed into the decision, and they can change their mind at any stage of the process.
John wells up as he talks about the final days of Erich’s life. Erich made the decision in January this year that he wanted to die in mid-February – opting for Friday 12 February.
‘I rarely saw him upset,’ says John. ‘Only on a couple of occasions. Around the Wednesday before he want, he said to me “John, there’s a yellow book up on the bookshelf – it’s a book I made at school – can you get it for me?” So I was looking for it, and I couldn’t find it, and when I looked back, he was crying – really sobbing.
‘I tried to comfort him, “Come on sweetheart – what’s wrong? Are you scared?”
‘He said, “No, I’m not at all scared. My body’s a mess. I hate it. I’m just worried about leaving you behind.”
‘That finished me. Really finished me. I just couldn’t hold it back any longer and I said, “Please, don’t be worrying about that, I’m 55 years on the planet – I’ll survive!”
‘From then on, it was extremely emotional – lots of hugging and cuddling.’
John cooked Erich his favorite meals in his last few days. On the chosen date, they both woke early.
‘I made him the breakfast he’d asked for, although I couldn’t eat a thing. Afterwards, he wanted some time alone to sort some stuff out on his computer. Shortly afterwards, he called me upstairs and said “Can you get me ready?”
‘He’d put his clothes out for me. That’s when I lost it. I had to go in to the other room and pull myself together – give myself the proverbial slap. I went back in, said “Come on,” and got him ready. It was absolutely heart breaking.
‘I got him ready. Sat him down. Then the doorbell rang. H was very officious, but it was exactly what was needed. He took control.’
Two other of Erich’s friends arrived to say goodbye and act as support for John. H told them that it was time for them to say their goodbyes to Erich in his bedroom.
‘We told each other that we loved each other, and I told him that I would be there until the end.’
‘Then it was my turn,’ says John. ‘I went up with H. He explained fully what would happen. He would give Erich something to drink to calm his stomach, and then a cup of pentobarbital [a strong barbiturate] and that it would taste bitter. He would drink it sat beside the bed, and then be lucid for around five minutes.
‘I would hold him and talk to him, but he would then feel extremely tired. At that point, we had to lie him on the bed. He would fall asleep and then about 15 minutes later, he would die.
‘I had been worried in advance of what it would be like, but it was actually a beautiful thing. The room was just right. We played some of Erich’s favorite reggae records beforehand, but had to turn the music off when the H turned up, so that there were no distractions.’
Erich was given the cup, which he had to drink himself – no-one else was allowed to help or assist him.
‘Then of course, we told each other that we loved each other, and I told him that I would be there until the end. And we just hugged and H kept very much in the background. And then just as he’d predicted, Erich said, “I feel really tired.”
‘That’s when we had to lie him on the bed. As soon as he laid down, he was asleep. I was in bits. I just lay with him and held him.’
After Erich stopped breathing, the two men went back downstairs, and H set about taking charge of what needed to be done – which was primarily summoning Erich’s GP to examine him and for the police to attend to file a report on what had taken place.
‘It just looked like he was asleep,’ says John, tearful at the memory. ‘I was kissing him and hugging him and holding him. It was very peaceful and beautiful.’
‘We treat cats and dogs better in the UK than we treat dying people.’
John wants to talk about Erich’s death to help other people going through similar experiences, and because he’s become a passionate supporter of euthanasia.
‘We treat cats and dogs better in the UK than we treat dying people. People should be allowed to take control of their death.’
He knows not everyone feels the same. Originally from Ireland, he initially faced resistance to the idea from members of his own family.
‘I’m Catholic. I’m not a practicing Catholic but I’ve still got the dogma in the back of my head, and there were times when I found myself asking, “What on earth is going on here?”.
‘I’ve got two friends, one of whom turned around and said that they thought what Erich was doing was vile.
‘I stopped communicating with them because what they said was not appropriate and certainly not sensitive. For a lot of people it remains something very taboo.
‘A couple of weeks before Erich died, there was a program on TV about a young man who got MND. I posted it on Facebook and said, “Please, if anyone does not understand what Erich and I are going through, please will you watch this.”
‘My family watched it and some friends watched it, and it changed everything. The power of that film helped me so much, because the outpouring of emotion I got from my family – it helped me and it helped them. I don’t think they would have had a clue as to what was going on without watching it.
Euthanasia: ‘It’s about allowing people to have the choice’
Now back home in London, John continues to deal with his grief and the experience of Erich’s death.
‘What carried us through is the unconditional love we have for each other. It was unconventional but absolute. No one has the monopoly on love but we had it in spades and it’s this that helps me each day deal with what has happened.’
‘I know [euthanasia] is not for everybody but it’s about allowing people to have the choice, it has to be. The one thing it’s taught me is that it would have been so wrong for Erich to have carried on longer.
‘He left happy and without pain, but knowing that he was never going to get better. He was someone who liked to be in control, and he had that choice, and I hate the fact I don’t have that choice in this country.
‘If it came to it, I would be prepared to go to Dignitas if the need arose, but we shouldn’t have to pay to go to another country.’