Lived experience

Increasingly, in recent years, the perspective gained by exploring lived experience has been recognised as fundamental to many aspects of research. ^{Reference Casey3} This perspective can inform the selection of topics of inquiry and planning the design of studies, through to the interpretation of findings and their publication. The contributions that people with lived experience can make to research are particularly impactful in psychiatry, where measurements of symptoms and distress are not based on biological tests or markers, and diagnoses are heavily reliant on subjective self-report. Here, insights from people with lived experience are invaluable because, in addition to illuminating phenomenology, these insights provide a unique means of understanding sophisticated psychological constructs such as attachment and belonging. Researchers can facilitate and help amplify a person’s lived experience through reflective exploration of these subjective phenomena, and therefore work in this area has evolved collaboratively. Where policy-makers are determining PAS eligibility requirements, people with lived experience can therefore provide crucial insight as to the operation and effectiveness of these requirements. To illustrate this, we next discuss a question pertaining to PAS eligibility and draw on the insights of one of the authors (A.H.), who has relevant lived experience.

PAS research

As mentioned at the outset, if PAS becomes available in the UK it is likely to be limited to those with a terminal somatic disease, and mental disorders such as depression will be specifically excluded. However, in practice, it is common for individuals approaching the end of their life to develop depressive symptoms and therefore, oftentimes, people with a terminal illness are likely to have comorbid depression. ^{Reference Kozlov, Phongtankuel, Prigerson, Adelman, Shalev and Czaja4} This is problematic because, to be eligible for PAS, it is necessary to characterise the person’s rational ‘desire-to-die’ as a settled and well-considered wish to end their life, and this needs to be reliably differentiated from suicidal thinking that may be present as part of a depressive illness (‘depressed-suicidal-thinking’). ^{Reference Malhi, Kahane and Savulescu5} This is an important distinction because first, depression is treatable, and resolution of the depressive syndrome usually leads to the resolution of any associated suicidal thinking. Second, if the idea of ending one’s life is not well considered it may not reflect the person’s genuine wishes. In other words, it is important to establish the authenticity of the suicide request. Therefore, the need to detect depressed-suicidal-thinking and distinguish this from a desire-to-die is an important consideration and one that will also be relevant to the UK, even if PAS is limited to only those with a terminal illness.

In this regard, some participants in PAS debates have assumed that psychiatrists are able to differentiate between these thoughts and that this is a core competency of the profession. ^{Reference Coelho, Gaind and Lemmens6} However, in reality, it is uncertain whether suicidal thinking should be viewed simply as a binary construct and whether particularisation is possible. For instance, it is possible that by their nature suicidal thoughts and one’s desires to die are dimensional and that these spectra are overlapping – making meaningful distinction near impossible. However, if there are distinct subtypes of suicidal thoughts it may be possible to characterise the two types of thoughts about wanting to end one’s life, either by mapping them chronologically and correlating them with clinical parameters or, alternatively, by investigating them phenomenologically through philosophical analysis and by asking for insights from those who have experienced both ‘kinds’ of thinking. Notably, neuroimaging research points to the possibility of distinguishing different components of depressive suicidal thinking, ^{Reference Malhi7} although to date this has yet to be shown to be reproducible and, as such, has no meaningful clinical application, but coupled with knowledge from lived experience, it may be able to help advance our understanding.

In this context, A.H. reports being able to critically examine her thoughts of wanting to end her own life and occasionally draw such distinctions. For example, she can recognise thoughts that emerge from careful evaluation of her life, a process in which she assesses the consequences of having suffered from chronic depression and carefully weighs up the positives and negatives of her life. From this type of analysis, she finds that it is the overall negative impact on the quality of her life, both at the time and in the future, that contributed to her desire-to-die. At the same time she is able to identify her depressed-suicidal-thinking, which she regards as less autonomous and more impulsive. Her depressed-suicidal-thinking is usually less stable and lacks the conviction and clarity of her desire-to-die. Furthermore, she notes that her depressed-suicidal-thinking is often marked by feelings of guilt and concerns about the effect that her death would have on close family and friends. In contrast, her desire-to-die is self-reported as more stable and rational and is aligned with her sense of self.

Importantly, even if the differences noted by A.H. cannot be discerned scientifically, the fact that she is able to make this distinction holds value in terms of knowing that the phenomenon can be meaningfully parsed – albeit experientially. At the same time, this example illustrates a key limitation of lived experience research in that it can distill only one perspective if a single individual is involved. Hence, lived experience research requires as much rigour methodologically as other research. ^{Reference Davis, Pinfold, Catchpole, Lovelock, Senthi and Kenny8}

Linked to this discussion is the question of whether PAS is preferable to suicide and, if so, why? Again, from A.H.’s perspective, having thought about what makes PAS preferable is its predictability, both in terms of timing and outcome. The fact that the procedure can be scheduled means that death is not a surprise to relatives and friends, final messages can be exchanged properly and personal affairs can be put in order. It also means that the reasons for choosing to end one’s life, which are understandably complicated, can be properly explained. This doesn’t necessarily mean that everyone will agree with the final decision, nor does it remove all traces of guilt (on both sides), but it diminishes the hurt and misunderstanding that suicide often invokes in family and friends, who are more likely to come to terms with the passing of the individual and respect their choice if they have been involved in the decision-making process.

If we accept that research is needed, the immediate difficulties are what research questions need to be addressed and who should conduct this research and, indeed, where and when this should occur. An organised and systematic approach is needed, and to this end the process of requesting eligibility for PAS lends itself to a longitudinal approach with investigations at every step of the way.

Those jurisdictions around the world that are already providing PAS, or some form of assisted dying, can conduct research on individuals contemplating and undergoing these procedures. ^{Reference Mroz, Dierickx, Deliens, Cohen and Chambaere9} In places where it is limited to those with a terminal somatic disease, expansion to include those with a mental illness may be on the horizon, as is the case in Canada, and here again it may be possible to make research an integral part of the process. Even where PAS is not yet available but is being given serious consideration, such as in the UK, aspects of suicide could be investigated in those who are receiving palliative care for terminal illnesses, where concurrent depression is likely, and in those suffering from depression alone, in mental healthcare settings.

As legislation in jurisdictions around the world becomes more sophisticated and the question of whether assisted dying should be extended from somatic to mental illness becomes more pressing, it will become necessary to better understand PAS and improve its provision.

To achieve this, research will be essential, and this should involve all manner of expertise including – for example, palliative care physicians and nurses, as well as psychiatrists and psychologists. Expertise should also be sought from ethicists, philosophers, lawyers and social workers, but perhaps most importantly, input should be sourced from those with lived experience, as well as those who have cared for individuals with terminal and chronic illnesses. Experience and learning should also be gained from jurisdictions that have been providing assisted dying, and available data should be interrogated.

It is not as yet clear whether assisted dying will become a reality in the UK and, if so, what form it will assume. However, whatever form it takes, it is important that research be undertaken first, and that those with lived experience be included from the outset and remain integral throughout.

Author biography

G.S.M. has more than three decades of experience as a psychiatrist managing mood disorders. During his academic career he has conducted research in depression, bipolar disorder and suicide.

A.H. has extensive lived experience. She has been ill for most of her life and has several psychiatric diagnoses. When she could no longer cope and was told there were no more treatments available, she saw no other option than to request PAS and, after undergoing an appraisal in The Netherlands, she was granted permission to end her life. However, in October 2024 she was offered renewed hope and developed faith that change was possible, her core sense of self changed so fundamentally that she found the will to live and she decided to withdraw from the PAS programme. The change came about after attending a retreat overseas where, for the first time, she was not regarded as ‘too complex’ and ‘hopeless’. The people at the retreat had not asked for her medical file and did not know of her past diagnoses prior to arrival. Instead, she was seen as a ‘clean slate’. The retreat treated her as a person in distress and someone who was seeking help. The organisers of the retreat did not focus on her illness or coping but instead on her underlying trauma and well-being. The programme entailed being resident for several weeks. It offered hope and spoke about the future in a way that inspired her to completely reconsider her decision to end her life. She then withdrew from the Assisted Suicide programme upon returning to The Netherlands, but remains eligible to end her life with the aid of a physician, should she wish to do so. Critically, none of the assessments and interactions she had undergone in The Netherlands had offered hope or discussed in detail alternatives that could help improve her quality of life. Instead, there was an acceptance that she had decided to end her life and that, because she had been unwell for almost all of her life and had trialled many treatments and interventions, nothing more could be done. A.H. has a degree in social work and training in recovery-coaching, and she is now working with children and adults and promotes the importance of hope.