Assignment: Loving, living and dying together in the Netherlands

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1:07Thanks for downloading the documentary from the BBC World Service. Now, this edition of Assignment was quite a long time in gestation. It was last year when I was looking at the euthanasia statistics from the Netherlands that I noticed a category I hadn't seen before. It was for duo euthanasia, for couples who decided to die together. Assisted dying in euthanasia is illegal in most countries, but that doesn't mean it isn't debated widely. Anyway, it wasn't until the end of May this year that I got a call from someone who told me they knew of a couple who might like to share their story with the BBC.

1:45Now, some of you might not find this an easy listen.

1:51This is the documentary from the BBC World Service. I'm Linda Presley with Assignment.

1:59On an early summer's Friday afternoon in the green, watery landscape of Friesland in the north of the Netherlands, a motor caravan sits on the concrete dock of a yachting marina. Hello. Hello. How are you? I'm Els. Very nice to meet you. Good morning. Thank you very much for welcoming me into your lovely home. It's for sale after Monday. Any buyers? Not yet. I thought you.

2:30Jan and Els have fewer than three days left on Earth, and they still like to laugh. The reason their motorhome is for sale after Monday is because this adventurous pair won't be here anymore. Jan is 70 and in continual physical pain. Els is 71 and has dementia. The following Monday, they will die together when they're given lethal drugs by doctors. In the Netherlands, this is called duo-euthanasia. It's legal and it's rare. But every year there are more Dutch couples choosing to end their lives this way. And a warning some of you might find this week's assignment upsetting.

3:16While Jan's on the phone, Els leaves to go and use the washing machine. She's in and out of the camper van during my visit. Jan doesn't really move and sits in the only position that eases his back pain, with one leg bent underneath him, fielding calls from family and friends. So this is going on all week. Who is this? All day this week. Who is this? It was my brother. Oh, your brother. And it's not only about our plans, but this is because we have to get rid of a lot of stuff. But is the family being helpful generally? Yeah, yeah, yeah. We just had with Els her brothers, four brothers and one sister.

3:56We had a perfect lunch. So tell me, Jan, how do I find you in a camper van living here? Before we had this camper, we had a boat. A luxury motorboat from 50 metres, 16 metres long. And we lived on it. So you and Els, you've lived your lives on boats. We have tried sometimes in a pile of stones in a house, but it doesn't work. When the luxury motorboat got too much to manage, Jan and Els moved onshore. A van still gave them the freedom to be mobile and make long trips to southern Europe for the winter. Over a lifetime, Jan and Els have never stood still. They were accomplished entrepreneurs running an inland shipping company.

4:44Els taught primary school children. As a teenager and young man, Jan played international hockey for the Netherlands and went on to become a coach. And both of these water lovers were competitive racing sailors. I asked Jan how he and Els met. Kindergarten. In the kindergarten. And Els, has he changed much? No, no. No, no, no. Yes, not. No, no, no. Then not, no, no. I cannot speak English that's okay but you speak in Dutch that's fine if you speak in Dutch no but back then we were too young to be together to be with each other or to with each other or to be together I can do it no problem no problem

5:42yeah don't worry It's terrible. Elsa's standing up. It's very good. I can all. But this is terrible. So Elsa's just standing up. She's pointing to her body and it works very well, she's saying. And then she points to her brain and she says, this is terrible. Elsa was always aware of how her disease might progress. Her father died with Alzheimer's. And both she and Jan were members of NVVE, the Netherlands' right to die organisation, for more than two decades. In the family, with their son, who preferred not to be named by the BBC, they talked about assisted dying openly. Els didn't want to end her days like her dad.

6:22A long time ago, this decided we wouldn't go that far. So Els is nodding here, yeah. Yeah, it starts because after Els got the diagnosis from dementia, she was furious. I was there with my son, we were with three of us. She stand up and she ran away and threw the door. Oh, she slammed the door. Yeah. You were angry, were you, Els? Yes, yes. Just like a steaming bull. Like a steaming bull. Yeah. And when was that? When was the diagnosis? November 2022, a year and a half. We know it now, I think. Els is saying yes. Perfect. She knows it best. Meanwhile, Jan, after a series of operations and injuries acquired during the heavy-duty work of shipping cargo, lived with constant pain.

7:19I have 24 hours a day. And do you take a lot of painkillers? No, I've stopped with that. If you take a lot of medicine, you will live like a zombie. It is what it is. It will be there till Monday. I'm not depressed or something like that, But the life we live, I think it's not the right way. So with all the pain that I have, and Els, her illness, I think we have to stop this. It was after Els learned her condition wouldn't improve that she and Jan, with their son, began to discuss the possibility of duo-euthanasia, the two of them dying together. In the Netherlands, euthanasia and assisted suicide are legal if someone makes a voluntary request and they're suffering, physical or psychological, is assessed by doctors as unbearable, with no prospect of improvement.

8:15Last year, just over 9 ,000 people died after being given toxic drugs by a doctor, around 5 % of the total number of deaths. Assessing two individuals in a couple who request euthanasia is complex. Of the thousands who chose to end their lives in 2023, there were just 33 duo euthanasias. That's 66 people. And there's something else. In the Netherlands, deliberately ending the lives of people with dementia is contentious. Some doctors refuse to do it, like Elson Jan's GP. She said, no, I don't do people with dementia because we do it tomorrow at four o 'clock. And then the patient says, no, not me because they change a lot in their minds.

9:05And has Els changed a lot? No, no, no. Because we have an example from her dad many years ago and that's certain in her head we don't want it. With their family doctor unwilling to engage with their death wish, Jan and Els turn to the Netherlands Centre of Expertise on Euthanasia, a mobile service run with specialist doctors. But the view of the couple's GP on dementia aren't unusual. A lot of doctors don't even want to think about performing euthanasia on a patient with dementia, so the number of euthanasia on patients with dementia is still very low if you compare it to the overall number of euthanasia.

9:47Dr Rosmarine von Bruchem, a geriatrician and ethicist at the Erasmus Medical Centre in Rotterdam, is right about the numbers. In 2023, only 336 of the 9 ,000-plus patients who chose euthanasia had a diagnosis of dementia. Dr von Broekhem has experience of ending the life of one such person. In my case, it was one patient with an early stage of dementia who was at that point still very mentally competent to express her wishes. The law is very clear that somebody has to be experiencing unbearable suffering. How do you assess that as the doctor to somebody with dementia? In the early stages of dementia the suffering often is of what is to come.

10:31Am I going to deteriorate? Am I going to not be able to do the things I find important? Am I going to not recognize my family anymore? So the expectation of suffering is often the large proportion of suffering at that point. The suffering that is to come. So Dutch law actually recognises that unbearable suffering can be a fear of the decline to come. Yeah, if you can express that well enough, if it is perceivable for both the doctor that is willing to perform euthanasia as well as the doctor that is specialised in mental competency, the existential fear of what is to come can be a reason to consider euthanasia.

11:14This, says Jan, was the case for ELF. This illness, we know where it ends, she will die. If you do nothing, she lives, but she can talk, she can think. That's what we didn't want. That's why I said, OK, we want to go together. And you've been granted euthanasia because of your pain, is that right? Yeah, that's right. There's no automatic right to euthanasia in the Netherlands. Anyone wishing to die must meet the criteria. Is their request voluntary? Are they suffering unbearably with no prospect of improvement? Are there no reasonable alternatives? Under Dutch law, every applicant is first evaluated by a doctor willing to administer the medication.

11:58Then they're visited and assessed by a second doctor. The overwhelming majority of euthanasia cases are handled by GPs. But the Centre of Expertise, where Jan and El supplied, supervised around 15 % of the total number of euthanasia deaths last year. A quarter of all patients who fill in the forms will decide not to go ahead. On average, the centre grants around a third of the requests it receives. Crucially, in the case of a couple who wish to end their lives together, doctors must be certain one of them isn't influencing the other. Well, there was a couple, they were both on their way down. I must say he was physically very bad after a couple of strokes, but also he was mentally, he lost much of his judgement.

12:44She was in the very early stages of dementia. I mean, you could hardly tell. It was more or less his decision. Dr Bert Kaiser works for the Centre of Expertise. He's been one of the attending doctors in two cases of duo euthanasia. But in this instance, he suspected the man was coercing his spouse. And I thought, more or less bullying her into, you know, I want you to go along with me so I don't have to worry about what's happening to you after my death. On a follow-up visit, Dr Kaiser talked to the woman separately, out of earshot of her husband. She said she had so many plans, things in her mind that she wanted to do, and she realised that her husband was very ill and was going to die, but she had no thought at all about going together with him, but then didn't voice this when we were together, the three of us talking.

13:34That is a difficulty, isn't it, with these dual euthanasias, trying to work out if one person in the couple is pressurising the other. And this was a clear case of sort of horrible pressure. Out of love, you could say. And so what happened in the case of this couple in the end? He died. From euthanasia? No. He died a natural death. She's still alive. When we kind of invented the euthanasia law, which is the 1980s, there were thousands and thousands of people dying in utter agony, begging for their death. Dr Theo Boer is Professor of Healthcare Ethics at the Protestant Theological University in Groningen, one of few outspoken critics of euthanasia in the Netherlands.

14:19And since the enormous rise of the palliative care, I think there's technically no longer a reason to legalise euthanasia. Like I'm not a pacifist in the war, I would say that killing by a doctor could be justified. However, that needs to be an exception. This advertisement feature is paid and presented by Poland's Ministry of Foreign Affairs. Looking for the perfect place to grow your business? For over 30 years, Poland has been a launchpad for innovation at the heart of Europe, powered by world-class research and ambitious young talent. From bold startups to established powerhouses, Poland offers the momentum, resources and reliability you need to take your business further.

14:59Poland, where businesses don't just grow, they're built to last. Find out more at polandyourplacetogrow.com.

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15:39In the case of couples wanting to die together, Dr Boer is concerned about the wider impact of these cases, especially after one of the Netherlands' former prime ministers chose to die together with his wife earlier this year. Both 93 years old, their deaths make global headlines. There's influence from both partners on each other, But what's more is that there's also a societal influence, I think, in the sense that now in the past year that we have seen dozens of cases of duo euthanasia, that there's a general tendency in the society to kind of heroify dying together and say, wow, this is incredible.

16:18book. But the taboo on killing on purpose, intentional killing, that taboo is eroding. And that is, of course, especially when it comes to duo-euthanasia, because in that case, often the illness of the one partner, that illness is not as bad as the illness of the other one. So it means that the life is being shortened, not in terms of days, but in terms of years. Neither Jan nor Els are terminally ill. They could probably go on indefinitely living in their camper van. Is there at all a feeling that you might be doing this just too early? I don't know. I don't know. I don't know. What do you say also?

16:58No, no, no, no. I cannot see it. Perhaps we die too early. It could be. But I have lived my life. My life is completed. I don't want no pain anymore. Also, the life we have lived, we're getting old. your body says at the moment stop. I think, we think it will be stopped and it has to be stopped. Right, and how do you feel about it, Elsie? The same, but that... That is with that one, right? I cannot go beyond that. No, because when we wait, because of her illness, she wants not getting block four. When Els talks about not going beyond that, and Jan mentions block four, they're referring to Els's disease worsening so that she enters an advanced phase of dementia, block or stage four.

17:59That's when she might be assessed by doctors as not having the capacity to decide for herself that she wants to die. In later stages of dementia, those seeking euthanasia in the Netherlands must have prepared an advanced directive. This must be written down and be clear about the point at which they want to be given an infusion that will kill them in the future when they aren't able to ask for it themselves. Often on paper, it's not specific enough. Dr. Rosemarie van Bruchem again. So people will write like, if I don't recognise my children anymore and it will become a point that they recognise one of the children and two, they will not recognise anymore.

18:36Have you reached that point or did you not reach that point? The difficulty of assessing a death wish in someone with advanced dementia means it happens rarely. Last year there were just eight cases in the Netherlands and there must still be unbearable suffering. So it could be patients that are very unhappy in the place they're living. They're constantly walking around searching for their loved ones even if they're already perhaps dead or have been gone for a long time. So in advanced dementia it's really suffering in the moment. Because it is tricky, isn't it, with dementia? People can live quite happily with dementia, can't they?

19:12Yeah, they sure can. And in advanced dementia, there are often a case where the family requests the euthanasia and says the point of the advanced directive has been achieved. She is no longer recognising us or whatever. And that is often true. But that does not take away the fact that there has to be unbearable suffering. I call it the dilemma of the changing me, because let's assume you have a patient that has been very interested in literature, in politics, in classical music, has enjoyed it all of his life. For his family, that's their dad. And then he becomes into the advanced stages and he is suddenly also enjoying folk music or a game of bingo, which he would never have done when he was younger.

19:55And then the family suffers for their former dad, the man with the classical music and the literature. they will assess it as suffering seen from the perspective of their dad as they knew him. But as a doctor I have to assess that the patient in this moment, the new dad, is actually suffering. And I cannot perform euthanasia on a patient who is in the moment happy based on the fact that he would not have wanted that beforehand. That's not going to happen. I'm not going to do that. Dr van Broekhem quite often fields those requests from children to end their parents' lives. This is sensitive and often painful terrain.

20:39This is the boat we lived on here in the harbour. This is our son. Among their photo albums, there are lots of pictures of Jan and Els's son. He's been with his parents every step of the way as they've been assessed, reassessed and finally given the go-ahead to be given a deadly dose of drugs the following Monday. Jan and Els know it hasn't been easy for him.

21:06You don't want to let your parents die. That's the only thing a child doesn't want. You don't want that your parents are going to die. There has been some tears and he didn't want it. He said, oh, better times and better weather and so on. But not for me. And what about for you, Els? Is that the same for you? Yes, yes, it's the same for me. There is not an other... Yeah, how do I say it? Els can't find the words in English, so Jan tells her to say it in Dutch. Yeah, there is no other solution for this. Not possible. And does the fact that you're going to do this together in less than three days now, Does that take some of the fear away?

21:56No, no, no, no, no, no. Absolutely no. No. Is there fear? No. No fear and no tears. And for you, Els? Not. Not, not, not, no tears. Wow, OK. That must have been quite hard for your son to hear that. Yes. Yes. What did he say, Els? Well, sad. And, yeah, how do you say that? Pitiful? No, it's not pitiful. No, it's not pitiful. That doesn't sound right. He says it is a pity. He thinks the better times will still come. We don't agree. And what does it mean for you, actually doing this together? It's a little bit romantic. After a whole life together, we can go together. For me, a plus. Let me tell it like that.

22:54We go at the same time. Probably we have a hand in hand and we have asked, is it organisable to get together at the same time our hearts will stop? They will try. On Monday, Elson Jan's last drive will be to the local hospice. Here, with family and friends, they'll meet the doctors who have agreed to end their lives.

23:23Dr Bert Kaiser, who isn't the attending physician for either Jan or else, says in duo-euthanasia cases, medics must be very well organised. This is one of the things about, you know, developing a routine. It sounds awful, but it's very important because you can't stagger into a room with your medication and then ask yourself, what are we going to do? You have to arrange this scene. And so you make clear to them that they have to go and lie in bed. You don't want to be sitting up in a chair, because when you're dead, you will sag out of the chair, which is a horrible sight. You take care that the IV is being placed in one left and one right arm.

24:02So on each side of the bed, a doctor can administer the drugs intravenously. You tell them what clothes to wear. Our advice is please put on that dress or that suit in which you look well and in which you feel comfortable. and it's the last one you'll see each other in, so they're lying there together. And then we say, shall we then? Is that your last check with them? Yeah. Are you OK? Show me now. And then they say, yes, of course, OK. And each of them checking individually? Yeah. So I just say, are you ready? Yes. And when I inject the stuff, I'm not saying you're going to die now, I say, now you can go to sleep.

24:43and in a dual euthanasia what you're trying to do is to organize it so that people die at the same time yes because that would be awful if one sees the other one dead which is not going to happen because they fall asleep very quickly how quickly 40 50 seconds and anyway the one wouldn't see the other dead the one would see the other sort of breathing quietly and sort of losing consciousness but not dead. And so the two of them, I mean, they kiss and they hold hands. Look, I'm not opting for this. I hope I never need euthanasia. But if it comes to that, it's not the worst way to die, you know. Some of you might be taken aback listening to Dr.

25:23Kaiser. Sensibilities about attitudes to euthanasia vary widely around the world. In most countries, it's illegal. But in the Netherlands, polls suggest most people support the law allowing assisted dying. Indeed, the majority would like to see the rules become more liberal. And that worries Dr. Theo Boer, especially in the cases of couples deciding to end their lives together. If you have a partner, you know that you will be the first or your partner will be the first to leave this earth. So it's a matter of human life. By granting euthanasia for these couples, I think we basically ignore or deny a fundamental human condition that is losing each other.