‘Psychologists could provide a space for those conversations’

Around two-thirds of the UK public support the legal right to assisted dying but pressing, important ethical debates and questions still remain. As two assisted dying bills pass through Scottish and UK parliaments, and MPs vote on the England and Wales bill today, I spoke to two psychologists with experience working with those with life-limiting and terminal conditions. 

The Assisted Dying for Terminally Ill Adults (Scotland) Bill and Assisted Dying for Terminally Ill Adults Bill in England and Wales would both allow terminally ill adults to request healthcare assistance to end their lives. While similar, the bills have some differences – the England and Wales bill would apply to those with six months or less to live while the Scotland bill does not include a time limit and both bills propose different safeguards.

Choice 

In 2014 we published an article when a previous assisted dying bill was proposed for England and Wales speaking to psychologists who were against assisted dying. In response to that article Professor of Psychology Carla Willig (City University of London), who has researched the experiences of people with advanced cancer, wrote to us to emphasise the importance of choice in the assisted dying debate. 

Both assisted dying bills emphasise the importance of patient choice and Willig told me her thoughts on this had not changed since she wrote to us 10 years ago. She said she believed people should have the choice to end their lives as a principle and compared this to debates around abortion. 'We look back and think, God, wasn't it terrible that at that time they were denying women the choice? And I think this legislation will be passed eventually and we're probably going to look back in 10, 20 or 30 years and shake our heads and say "God, how could we be so cruel to not allow people this choice?" 

Willig also mentioned that the importance of choice could have a positive impact on the experiences of terminally ill people, even if they did not end up going through with ending their own lives. She pointed to other countries where assisted dying is available where a significant number of people who are approved do not go through the process. 

'That confirms to me that it is really important to think of it, not just as enabling people to check out when they want, but that the amount of anxiety about what will happen in the final stage will be greatly reduced by having that option. Quite a lot of people probably wouldn't need to use it, but it would help them a lot to know that if it gets really unbearable, they can "press that button".' 

Lecturer in Exercise and Health Psychology, Dr Rachel Stocker (Newcastle University), has carried out research in palliative care services and told me it was critically important to separate the concepts of palliative and end of life care and assisted dying. She said that given people need to travel abroad from the UK to access assisted dying, and relatives who help relatives access assisted dying can be charged with a criminal offence, people did not often take this step in the UK. 

'In psychology we know that choice – or feeling that we have a choice – is crucial to wellbeing. Having what is perceived to be a lack of choice about the timing and manner of our death can be challenging to wellbeing, regardless of how many individuals might in theory might be eligible for, and go on to choose, an assisted death. However, this choice does not just involve the individual. It also involves others, such as doctors and a judge, making a choice to be involved in the assisted dying process, and support or not support an application under the Bill. In this way, choice is not only a psychological issue but becomes a moral, and often, spiritual or religious, issue.'

Vulnerable groups

Those who have concerns over assisted dying often raise the potential exploitation of vulnerable groups as a reason not to pass legislation (e.g. see the BBC programme, 'Better off dead?'). However, Willig suggested that the social construction of vulnerability in society had shifted across the last 10 years. 

'All kinds of people are described as vulnerable now when people want to make the argument that they need protection and support,' Willig told me. 'There's a positive side to that – not everybody is equally powerful in society and some groups of people need more support and more resources and more investment – and I'm completely on board with that. But what I've noticed, and I'm not the only one, is that when people want to make an argument like in this debate about assisted dying, they are constructing vulnerable people who need protection, and that is then used to justify what you want to bring in as a law or as a new practice or policy. But there's another side to it. Constructing people as vulnerable and then claiming that they need our protection is actually quite a paternalistic move, because you end up saying these people are not able to make up their own minds – we can end up denying people choice who are precisely the groups that we want to advocate for.'

Role for psychologists

If assisted dying legislation is passed in the UK there seem to be many areas where psychologists may be able to contribute. Stocker told me about the vital importance of psychological support in palliative care, which is currently under-funded. 

'If this bill is passed practitioner psychologists working clinically in palliative care, such as clinical and health psychologists, are well placed to potentially be involved in assessment of patients. If this is the case, they would need to approach the implementation of the Bill in the same careful and considered manner required by any other implementation of principles of law – such as assessments under the Mental Capacity Act. The emphasis should be on helping patients make truly informed decisions without persuasion or coercion.'

When I asked Stocker what she would say to those who feel assisted dying could undermine the provision of high-quality palliative care services, she told me she felt this was valid given these services are already underfunded. 'Again, I would emphasise that we need to separate out the concepts of palliative/end of life care and assisted dying – but many argue that this is simply not possible. Whatever way the Bill goes we must not challenge any funding/provision for the already underfunded palliative care provision in this country – other than to increase it.'

As a psychologist who explores existential approaches, Willig suggested if this legislation is passed there could be an interesting role for psychologists in supporting those who choose to end their own lives in reflecting on life and death. She pointed out that people with terminal illnesses may struggle to speak with loved ones about death. 'People say they can't tell their partner or children how they really feel because they need to keep their morale up... psychologists could provide a space for those conversations. It could be an existential health psychologist, someone with the openness that you can talk to without them trying to make things better or reduce anxiety or fix something.'

'Stay in that war zone…' 

While many of us struggle to confront our own deaths, Willig pointed out the importance of being honest with ourselves about what it really means to not allow people the option to end their own lives. Around 10 years ago she explored the existential experiences of people living with advanced metastatic cancer who had around two to four years left to live. 

She said from this study she found that we can conceptualise our bodies as an environment or landscape. 'When everything is fine and you feel well and healthy mentally and physically, you can enjoy that landscape, everything is as it should be. Your heart is beating, your blood is flowing, it's not challenging, it's basically benign. When you're in a state of really intense suffering due to advanced cancer I think the internal environment becomes like a war zone. It's like you're trapped and you can't get out. It's a hostile environment, it's alien, it's not familiar anymore, it doesn't offer any comfort. Without assisted dying we're telling people that they need to stay in that war zone – however long it takes.' 

Willig also pointed to another uncomfortable truth in the assisted dying debate – that many people in the UK with a terminal diagnosis may die by suicide or attempt to. Office for National Statistics data from 2022 found those with terminal health conditions were more than twice as likely to take their own lives. 

She pointed to a story she had read from Dignity in Dying about attempted suicides among people with terminal illnesses. 'People [who attempt suicide] may be left with further additional illnesses or injuries or disabilities. That's not really talked about. When people are rejecting the idea of assisted dying, they're making it sound like it's either you have assisted dying, or people stay alive, and maybe you have some pain or some distress. But they don't ask what happens to the people who are desperate to end it and who aren't allowed?' 

– If you are struggling contact Samaritans by calling 116 123 or email [email protected]
[Editor's note: Last time we covered end-of-life choice, a reader took me to task for including these details, saying we had 'completely missed the point'. I do understand the difference between end-of-life choice and suicide, but still felt that on balance it was good journalistic practice to include them - particularly here, where there is explicit discussion of suicide.

– We will be following the assisted dying bills as they progress through parliament. If you have alternative views to those we have sourced here, or you would simply like to share your thoughts and experiences, we would like to hear from you: email [email protected]

The British Psychological Society previously responded to the Scottish Parliament Health committee call for views on the Scottish Assisted Dying bill, which you can read here.