Straight away, she told me she wasn’t going to let the illness progress. She wanted to end this at Dignitas. I was really shocked – firstly about her diagnosis, but also about her immediate decision to die sooner than ‘the end’.
On the same day Marjorie* learned about her mother’s cancer diagnosis, she found out about her decision to leave the UK for Switzerland, where she could legally choose an assisted death. Despite having reservations about this abrupt announcement, Marjorie agreed to assist her on the journey. She told us her mother had made the choice “because she was always so independent and hated the idea of having to be reliant on me. She was a scientist. It was in keeping with her whole quite rational approach to life.”
But there was another reason that Marjorie’s mother had applied to join the Swiss non-profit organisation Dignitas, which provides doctor-assisted suicide to members with a terminal illness or severe physical or mental illness – the experience of watching her own father die. As Marjorie explained:
Grandad was always in control of everything, but he was denied that in his death. Mum was very close to him. Once he’d started dying, she used to tell me how he had begged to die on the second day, but it took him three more days to die. Mum said that confirmed her view – so when she got her diagnosis, she wanted to make sure she had a plan in her back pocket.
Marjorie’s story is just one of thousands that play out around the world each year. Some form of hastened death is legal, or in the process of becoming legal, in all or portions of at least 13 countries, and under consideration in several more.
The UK prime minister, Sir Keir Starmer, has said he supports a change in the law. The law has been widely criticised for its lack of clarity (a police force is being sued after arresting someone returning from Dignitas on suspicion of encouraging suicide). The Scottish parliament appears poised to follow Ireland in legalising assisted dying, while in Jersey and the Isle of Man, legislation has already been passed.
Choosing to hasten one’s death is an intensely personal, carefully considered decision. But it is rarely made in isolation: people who choose to die enlist the emotional and practical support of family, friends and trusted clinicians. After the death occurs, these people remain to bear witness to this extraordinary journey – and their own experiences of it.
With colleagues at Lancaster University, we’ve interviewed the family and friends of many people who have hastened their own death – whether through euthanasia (where a doctor administers lethal medicines), assisted suicide (a doctor prescribes medicine but the patient self-administers it), or by the person voluntarily stopping eating and drinking. We’ve also talked to health professionals who have typically experienced hastened deaths multiple times.
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Many people who had chosen to help someone achieve a hastened death said they felt entrusted with a tremendous responsibility. Some described it as an “honour”, which may have been partly motivated by their moral conviction to help avert unnecessary suffering in others.
But those we spoke to were often keenly aware of how others judged both the choice to hasten death and the people who helped bring this about. In some cases, this led to lasting feelings of guilt and anxiety, complicating the pain already engendered by watching – and helping – their close friend or loved one to die.
The moment of being asked to help someone die
Coming home that afternoon, Dale was just able to say: ‘This is what I’m going to want to do. I am not going to want to live this disease out.’
Joanne and Dale had been married nearly 50 years when they recognised signs that Dale, a retired school administrator, was developing dementia. Although they lived in a US state that allowed some forms of assisted dying, applicants had to have a prognosis of less than six months to live.
The couple discovered the alternative option of voluntarily stopping eating and drinking (VSED) through a presentation from their local end-of-life rights organisation. They learned that forgoing fluids leads to dehydration and death, usually in 10-14 days. Joanne said this option offered a way for them to enjoy as much quality time as they had left, while relieving Dale’s anxiety about a future living with dementia in a care facility for many years. “I think that was one of the things that really scared him,” she said.
Joanne learned what options were legally available, and determined she would not be placing herself at legal risk in helping him (VSED is not covered by US law, and is typically considered legal). The other deciding factor was visiting Dale’s physician, who agreed to provide medication to reduce anxiety and discomfort during the VSED process. Joanne said their decision helped ease the suicidal thoughts Dale had been having initially when his cognitive abilities began to slip:
He would [still] wake up in the night sometimes and say: ‘I just have to end it. I can’t live like this.’ And I would say: ‘Well, you know we have a plan – I’m here and will support you, and your doctor’s going to support you too.’ And that would reassure him and he could move ahead. It was the desperation he felt that helped me come to accept his choice and realise that I could do it.
Not everyone we spoke to felt as comfortable as Joanne about being asked to help a loved one accelerate their death. Stephanie had long known her father, a Swiss citizen, had membership of a right-to-die association. She had disagreed with his choice while respecting his right to make it. However, when he announced his intent to pursue a hastened death after being diagnosed with rapidly progressing cancer, she admitted she felt deeply conflicted:
When he got sick, he immediately said: ‘Ah anyway, I don’t care, I’m registered in [a right-to-die association].’ And I told him: ‘Listen, first we’ll examine your situation. We’ll look at what’s possible to do. First you’ll fight, and afterwards we’ll see how things will evolve.’
But even as she bargained for more time and hoped he would ultimately choose a natural death, Stephanie felt obligated to respect her father’s intention by helping him investigate the steps to undertake an assisted death. Throughout her life, her father’s changeable moods and need for control had swept the family along in their wake; the feelings were frustratingly familiar.
As Stephanie’s father’s illness progressed, he insisted on maintaining control over the timing of his death and all the details of his funeral and estate affairs. Stephanie and her brother tried to help him, even though they personally did not favour assisted dying.
Making plans for an assisted death
We had the summer leading up to [my mother] dying. We knew she was going to die, which was absolutely awful – but also the most amazing gift, really. Me and my kids had a whole day with her every week.
For Marjorie and her mother, the months between deciding to pursue a death with Dignitas and leaving for Switzerland were bittersweet. Marjorie’s mother had asked her to keep the plans secret from everyone but their immediate family. But she also needed help planning the trip:
She wasn’t able to use her laptop any longer, so I became the one who had to do all the organising. We could be very open with each other, and we were actually quite business-like. We had ‘business meetings’, separate from any other family contact, where we would review how it was all going.
Family and friends are often called on to help with the logistics of a hastened death, from travel plans and organising care at home to picking up the lethal prescription at the pharmacy. Joanne recalls spending months locating the supplies and care services that Dale would need when he began VSED – tasks that became ever more difficult for him as his dementia progressed:
Joanne described the “big old binder” she filled with all the information and forms she was collecting. She said it was a very reassuring to know she had that at her fingertips. Then suddenly, Dale’s dementia rapidly worsened. Having consulted with another family who had undertaken VSED, Joanne recalled:
I had ordered all the things we would need – things I would not have necessarily thought of. I’d also found out where to go to rent a hospital bed in a town this size … I think it really helped me more than it helped Dale, because he wasn’t necessarily so aware of all that stuff. But it was something I needed to do, just so I felt prepared. And ultimately, I was prepared.
In contrast, Stephanie and her brothers’ resolve to respect their father’s wishes was taxed as he changed his mind repeatedly about what the date of his death should be. He took antibiotics to control an infection that might have proven fatal before his chosen date – then wavered again the night before his planned death.
The uncertainty wore on the family, who had brought their father home from the hospital to care for him but struggled to keep up with his shifting moods. The physician who conducted the interview to confirm her father’s eligibility and set a date took his decision at face value; Stephanie told us she wished he had explored her father’s ambivalence more deeply.
Feeling bound to honour his wishes but frustrated when those wishes changed yet again, Stephanie and her brother finally lost their tempers with their father the night before his scheduled appointment, and told him they would not accompany him at his death. She went to bed uncertain whether she would see him again.
Accompanying a loved one on their final journey
We went to an extremely nice hotel in the centre of Zurich – and met other people who were there for a weekend or whatever. They would ask: ‘What are you here for?’ We realised we’d better think of a good cover story, because you’re holding this information and it almost feels as though it’s written all over your face.
As the date for Marjorie’s mother’s death grew near, they booked two return tickets – “just in case” – for Zurich. Marjorie left her two children with a friend, and told only immediate family about their plans. On the day they arrived in Zurich, mother and daughter kept to themselves, unsure how to fill the time. Their stay there was, Marjorie recalled, “like the Wizard of Oz when it goes to Technicolor”:
Everything about it was just heightened. Every moment becomes really precious. It’s impossible to believe that this living person in front of me is going to be dead in a few hours – just impossible. She was only there for the afternoon and evening. That evening was very hard because we had a meal together, her last dinner. Neither of us was very hungry but we had a glass of wine. She joked that it was her last supper.
One of the important ways our interviewees – and medical ethicists – distinguish hastened death from suicide is its more social nature. Suicide is generally illegal and people choosing to die by suicide tend to keep their plans and the act secret, lest others try to stop them or be charged with assisting them.
However, even for a hastened death, very few people outside the dying person’s closest supporters usually know about the plans in advance.
In the US, Switzerland and Austria, individuals must self-administer the medication, sometimes as a drink but more commonly (in Switzerland) by opening up a port on an intravenous infusion. People who stop eating and drinking need round-the-clock attention, as they become physically weaker over a course of one to two weeks.
In the weeks, days and hours leading up to a planned death, family and friends reported many different feelings ranging from pragmatic to isolated to grateful. There is no cultural script that tells people planning their death, and those assisting them, how to prepare for the occasion. Often, disease progression dictates the timing. After Dale’s dementia began to progress rapidly, he and Joanne deliberately chose his VSED start date with their family in mind. She explained:
It was December, and you think: ‘You don’t want this to overlap Christmas. This is just not something you want your children and grandchildren to always associate with the holidays.’
But they were also afraid to wait till the new year, because by then Dale might have lost the ability to focus on not eating. Instead, they chose to go ahead quickly in early December:
In many ways that helped us, because there was no such thing as: ‘Oh, maybe we can go another month or [even] six months. The caregivers could be here, the doctor was on board …. Within just a week or so, we were able to say: ‘We’re ready to start.’
The day of death
I don’t even know how long we were there in the house where my mother died. It was probably about two or three hours.
In the hours before her death, Marjorie’s mother met with a physician in a home-like environment maintained by Dignitas in a residential area of Zurich. The physician asked questions to confirm she understood what she was requesting. For Marjorie, time stopped:
My mother had to have an [anti-vomiting drug] first. The shortest period afterwards when you can take the barbiturates is half an hour, and she was like: ‘Right, it’s half an hour.’ Finally, the doctor said: ‘If you take this, you will die’ – and she said: ‘Yes, yes.’ Then she had to drink it in front of them.
For those who have met the organisation’s strict requirements, a Dignitas physician prescribes medications which are mixed in water. The person must drink it themselves or be able to manipulate a valve to administer the drugs through a nasogastric tube or intravenous port. The mixture is so bitter that anti-nausea medication is given first to reduce the chances that the person vomits before it can take effect. For Marjorie’s mother, this was a particular concern:
The worst bit for me was she started being sick because it tastes very, very bitter. But then she just said ‘I feel woozy’ and we got her on to the bed. We tried to lie her down but they said keep her upright for a bit, so the drugs can go through her body. Then she lay down, went into a deep sleep, and after 20 minutes [the physician] said: ‘She’s gone.’ It all happened very quickly. She just left. It was peaceful, but it has stayed with me.
The suddenness and finality of a planned death is something many family caregivers report. Some described holding grief at bay before the death to focus on the patient’s needs or the logistics; others reported relief that their loved one was able to die on their terms, with less suffering than their illness might otherwise have entailed.
A unique aspect of VSED is that, as the patient becomes weaker and less aware, caregivers must play an active role in ensuring the death proceeds as intended – remaining vigilant to keep them comfortable and remind them not to drink. This can be stressful for loved ones and health professionals alike. And then there is the question of how much to involve other family members, as Joanne explained:
Dale had been really clear at the beginning that he did not want our children to be here for the first couple days. He thought: ‘If the kids come, they’re going to possibly ask me to change my mind, to wait’ … So they all arrived on day eight. That was a little bit hard for the kids, but they’d had their chance to be with their dad prior to the start.
Families often described this period as meaningful yet slow. Joanne relied on hired aides to sit with Dale at night, so she could eat without distracting him and get some much-needed sleep:
Those were hard days for me because I knew we were getting toward the end. At the same time, I was wondering how much longer it might last – because there’s no way to know and he’d gone into this as somebody in robust good health.
For Stephanie, the day of her father’s death brought reconciliation. She was awakened by a call that he planned to follow through with his decision after all. When they arrived, he apologised for hurting the family with his demands for control. Stephanie recalled him telling her: “You promised that you would hold my hand!” She replied: “I promised, I’m here and I’m staying, so don’t worry.”
Stephanie’s brother and her father’s girlfriend said their goodbyes. Now she was the only family member left with the physician, who mixed the potion for her father to drink:
[After taking it], he started to say: ‘Ah, I’m happy – I’ve had a good life, my grandsons are great, and my daughter gives me her hand and it’s great.’ And well, I wasn’t shocked by what I saw. I felt I witnessed a natural death – but on the other hand, I felt life slipping through my fingers there; I really experienced that.
After almost three-quarters of an hour, her father’s death was declared. For Stephanie, what lingers is not how her father died but the emotional toll of getting there:
He took us into a whirlwind, and I don’t know if he really had the right to drag us into this. It’s something we shouldn’t do to the people we love. On the other hand, I wouldn’t have wanted him to do it in secret and then suddenly we get a phone call … Then I would have been super angry.
Experiences of healthcare professionals
In the period before the euthanasia, everything should be exactly right – and that places a lot of pressure on yourself.
While people like Stephanie, Joanne and Marjorie are unlikely to witness more than one hastened death, some health professionals encounter it on multiple occasions. The magnitude of witnessing or facilitating such deaths – or administering the lethal drugs – can weigh heavily in a field more oriented towards preserving life than ending it.
Heleen, a health aide at a hospice in Belgium, said she tries to accommodate whatever patients want in their final hours – in one case honouring a request for a manicure, makeup, and help putting on a favourite outfit. On another occasion, she recalled helping a family fill the tense final minutes despite not knowing this was a planned euthanasia:
We start eating [on the ward] at half past 12, and on that day I made french fries for everybody … Then I came over to [the patient’s] room: ‘Who wants to have french fries?’ Two sons are sitting beside his bed, and they look very sad and a little bit angry to me: ‘No, my father is getting euthanasia in half an hour.’
Heleen immediately apologised to the family for not having read the ward report before she came over to them. They told her not to worry and she continued on with her lunch round:
About ten minutes later, they come after me [saying]: ‘He wants to have french fries, we asked the doctor to take a little more time.’ [The patient] wanted to eat french fries ten minutes before his shot! So he was sitting and they had the plate of french fries on his tummy, and the sons were eating french fries too. It was a nice, happy end.
For many healthcare professionals, facilitating these meaningful moments in the final days and hours can ease their own feelings of dissonance at knowing a life is about to end. All told us a hastened death is never a “normal” death, but a death that stays with you. Anika, a Belgian physician supervising a palliative care ward, was keenly aware of how such deaths affect both the physician who attends the death and the entire staff:
It’s important to arrange support for yourself … On the day you perform the euthanasia, it’s very important to have somebody to [go out with in the evening]. It is not normal and it has a lot of impact … Sometimes you read about physicians who perform six euthanasia cases within half a year. I can absolutely not imagine that. For me, it really takes a year before I get over it and think: ‘Ok, now I’m ready for a new trajectory.’
The aftermath of a planned death
I knew I could not face travelling back the same day without my mother, so had booked the flight for the day after. It was so odd being on the plane with an empty seat next to me. Then when I got back to the UK, I had to face everyone and tell them what had happened.
In the days and weeks after, Marjorie found herself relaying not only the news of the death but the means. Her mother had written letters to her many friends for Marjorie to post after returning from Switzerland, in lieu of a funeral service:
That was tough, because I had to deal with the emotional responses from all these people I didn’t really know very well. People had known [my mother] had been very ill, and some people wrote to say they felt that her choice was quite understandable. Others seemed very shocked and disappointed that they had not known about her plan before she died.
Family and friends described sharing the news of their loved one’s death as a complex process of assessment: how much detail the other person requires; whether they will be understanding of the choice of hastened death; whether to share the type of death in an obituary. Some reported feeling unable to draw support from friends or family who didn’t know the full story. Marjorie said the lack of a funeral service was another complicating factor for her:
I had to email and speak to lots of people. I think that if I had been inviting them to a funeral, they would not have been so demanding of my time, because they could have attended that. It was as though they needed some outlet.
Ultimately, like many of the close relatives and friends we have spoken to, Marjorie was glad to have been able to support her mother’s wishes. But she concluded that the logistics, secrecy and effort were far more than a dying person and their family should have to organise. In the years after her mother’s death, she began to speak in favour of reforms to change the law so people in the UK could die in their own homes. She described this campaigning work with pride, saying: “It’s like, you know, something positive is going to come from her death.”
Strikingly, some of our interviewees – particularly those who had undertaken a hastened death in secret from the UK – felt they could not access the bereavement support that is generally available to people whose loved ones have died through natural causes, for fear of being arrested. But while the need for ongoing secrecy burdens some after the death, descriptions of lasting guilt were rare in our interviews. Rather, we heard many family and friends describe feeling at peace with their decision to support the hastened death of their loved one.
One reason may be that people who are interested in pursuing hastened death tend to ask for help only from people who will be supportive or at least become supportive over time. Furthermore, research on hastened death often relies on people who want to share their stories; those who have had negative experiences may be less likely to want to recount them.
Concluding thoughts
The number of countries legalising assisted dying is likely to increase – including the UK. Most of the debates about legislation still focus on the right of the individual to make a choice – but choices are not made in isolation, and two key groups need support: healthcare providers and families.
There is an assumption that assisted dying will be integrated into healthcare systems. However, while recent polls of UK doctors show most favour a change in the law to allow some form of assisted suicide, only a minority of registered doctors are willing to be directly involved in administering the medications. Given their reluctance, alternative systems of delivery will be required that ensure sufficient scrutiny at every stage of a hastened death, to ensure safeguards and maintain trust while reducing doctors’ exposure to this potentially stressful event.
For family members closely involved in an assisted death, the process may feel less isolating. However, family and friends on the periphery can struggle as they come to terms with a decision they were not part of due to the inherent secrecy in the decision making. The toll on them can be profound and support from bereavement services will be important.
In February 2024, the UK health and social care select committee’s report on assisted dying recognised the complexity of this issue. It is easy to think of this solely in terms of one person’s rights, but each of us is part of a society. All parties involved in assisted dying should be consulted before new legislation is introduced.
We made a short film to bring to life the experiences of the many other people involved in an assisted death. But we have not addressed the wider concerns related to safeguarding vulnerable people. The debate is nuanced and profound, and we should be ready to listen to all accounts. If the law changes in the UK to permit assisted dying, we need to find a solution which both protects and supports the person requesting it – but also friends, family members and healthcare workers.
* All names in this article are pseudonyms to protect the identity of the interviewees.
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The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.
This article was originally published on The Conversation. Read the original article.
