Author: Prof. Charlotte Wilson Jones, Professor of Psychiatry Education & Innovation; Director of Mental Health Education at Kings College London.

Prof. Wilson Jones  works as an end-of-life care psychiatrist, psycho-oncologist and has over 3 decades of experience in the field. Here, she explores how proposed assisted dying legislation for England and Wales may impact on practice

I have spent over three decades working as a psychiatrist and psycho-oncologist, including years as a palliative care psychiatrist in a hospice, caring for people with serious physical illness and mental illness, and helping patients and families navigate the psychological realities of dying. I have seen thousands of patients after suicide attempts and with suicidal thoughts. I have also worked extensively assessing mental capacity, including at the end-of-life, and teach end-of-life psychiatry at King’s College London.

I therefore approach the Terminally Ill Adults (End of Life) Bill, which returns to the Commons for Second Reading on 11 September, not primarily from an ethical or political position, but from the perspective of extensive clinical experience with patients at the end of their lives.

Being given a terminal diagnosis is a profound psychological event. Patients can experience depression, hopelessness, anxiety, loss of identity, fear of dependency, and an overwhelming sense of being a burden. These feelings change and evolve over time even when the underlying physical illness does not.

The medical literature has long recognised how common depression can be in terminal illness. Estimates of major depression in terminally ill patients range from 25% to 77%. Importantly, psychological distress can influence a person’s desire for death. In a prospective study of 92 terminally ill cancer patients receiving palliative care, 17% had a high desire for hastened death and 16% met criteria for a current major depressive episode. Patients with major depression were four times as likely to have a high desire for hastened death as those without depression: 47% compared with 12%. Depression and hopelessness were the strongest predictors of a desire for a hastened death. Notably, the study found no significant association between pain intensity and desire for hastened death.

These findings are reflective of my own clinical practice. Patients in my psycho-oncology clinic often express suicidal thoughts or feelings of hopelessness, particularly when they have recently been told their cancer is considered no longer treatable. All suicidal patients should be thoroughly assessed, including a full biopsychosocial assessment, with expert senior consultant review when risk is high. Good care involves discussion with the wider oncology team and communication with the patient’s GP, often involving family or significant people in their lives. A full assessment of need is done to ensure that the person gets care and support and they are seen ongoingly.

I have seen how much positive change there can be when people with a terminal diagnosis are given the opportunity to talk about their fears, to explore experiences that have never previously been discussed, and to find meaning in their lives. Addressing loneliness, feeling a burden on loved ones, and social factors are very important. Treatment for depression or other mental illness makes a significant impact. When I started working as a psycho-oncologist many years ago, I was not expecting anti-depressants to make such a difference to people at the end of their lives, but my clinical practice, and research, shows depression can be treated at the end of life and impacts patients’ mental state and desire to end their lives.

In my own experience, all my many patients who initially wanted their lives to end, including some who discussed assisted death abroad, did not continue to want to hasten death once they had received appropriate support. I cannot claim this will always be so, but it has taught me never to assume that a wish to die is immutable.

When I first read the text of the “assisted dying” bill going through parliament, I was shocked. Regardless of anyone’s views on the principle of assisting death, it falls short of even basic clinical practice for somebody who has been given a terminal prognosis and feels suicidal. There is no requirement for a full psychosocial assessment of need or an assessment to rule out mental illness by a consultant psychiatrist, even though this is a life-or-death situation. There is not a requirement for a palliative care doctor to discuss care options. There is an option for the assessing doctors to get further opinions but not a requirement.  Any patient with ongoing suicidal thoughts would usually be monitored and supported, and any remediable psychosocial issues addressed.

Second opinion capacity assessments have been a regular part of my job. For over 20 years it was something I often did a few times a day. It can be an extremely complex and nuanced assessment, especially in people with serious physical illness, often on many medications, many with communication difficulties, in extremes of emotion, and often with mental illness. A patient deemed by a junior doctor as having capacity is often reassessed as not having capacity by more senior experienced clinicians. MPs voted out the requirement that a person be asked why they want to die. How then can a capacity assessment on choosing to end their life be done, without even exploring why a person wants to end their life?

Coercion is another factor which could influence a decision to die and is particularly difficult to identify. It may involve overt pressure, but it can also be subtle: fear of dependency, financial hardship, domestic abuse, family expectations or the belief that one has become a burden. Coercion is complex. Coercion and abuse are known to be associated with suicide. Coercion tends to be revealed when a patient knows and trusts the clinician over time. Yet the bill assumes that assessing doctors can rule out coercion in a patient they have never seen before and whom they will not see over time and build up trust. The government will provide a course on coercion but clinical experience in this area is not required.  It will have to be accepted that, if this bill passes, some people will have been coerced into ending their lives as it is not possible to definitely rule out coercion even with training and experience.

The Government’s own Equality Impact Assessment recognises these risks. It notes that disabled people may be particularly susceptible to feeling like a burden and that pressure may arise from lack of appropriate services, poverty, and difficult living conditions. It also states that disabled people are twice as likely as non-disabled people to be victims of domestic abuse, including coercive behaviour. In discussing ethnic minority communities, it raises concerns that structural pressures including poverty, poorer healthcare access, and domestic abuse could contribute to people choosing an assisted death to avoid financial hardship or escape abuse.

The outcome of getting the assessment wrong is fatal. Before Parliament changes the law then, it should ask a basic clinical question. Is the bill sufficiently equipped to distinguish an enduring, autonomous wish to die from one shaped by depression, hopelessness, coercion, fear, dependency, inadequate care or the belief that a person’s life has become a burden? After decades of caring for people at the end of life, I am convinced we are not there yet.