Terminally ill individuals want a ‘good death’, one that is pain-free, that they have control over and enables them to retain their emotional wellbeing, a new report on terminally ill individuals’ attitudes to assisted dying by London South Bank University (LSBU) has found.
The new LSBU academic research is the first to look at assisted dying through the lens of self-determination theory, which suggests that all human behaviour is motived by three universal needs: Autonomy, the mental ability to make their own decisions (‘Competence’) and connection with others (‘Relatedness’). Assisted dying has previously been seen as a product of ‘loss’ (loss of dignity, control, and independence). However, the report argues that assisted dying actually gives terminally ill individuals control over the dying process (Autonomy), enabling them to make end-of-life decisions and die how they wish to. This gives a sense of mastery over the dying process (Competence), and finally, they can have a minimally distressing death that they are happy to share with family and friends (Relatedness).
The report found assisted dying is seen as a safety net by terminally ill individuals, allowing people to enjoy the remainder of their lives without worrying what death will look like. It is seen as another option when palliative care does not work, not as a replacement to high quality palliative care.
Wrongly mistaken as a driving factor in the ‘want for assisted dying’, the new research found being a burden is actually one of the least important reasons for those seeking assisted death. Instead, terminally ill individuals find continuing to live with pain, suffering and a loss of dignity and autonomy to be a burden on themselves. Pursuing an assisted death was based on one’s own desire to have relief from pain and suffering.
The report calls for the introduction of legislation which will give more safeguards and protection to vulnerable individuals than what is currently in place. With a blanket ban on assisted dying, many practices are secretive and can lead to people attempting to end their suffering alone, or their friends and family risking conviction to help their loved ones.
Dr Jaimee Mallion, Senior Psychology Lecturer at LSBU and author of the report, said,
“This new research was the first in the UK to explore the role of basic human needs in understanding assisted dying, and found it allows terminally ill individuals to secure a sense of autonomy, competence, and connection. It was a very interesting project that has been submitted as evidence for assisted dying consultations in Jersey and the Isle of Man, and as a Parliamentary Briefing to Members of the Scottish Parliament.”
“This was an emotionally challenging research project, hearing the often harrowing end-of-life experiences from individuals with terminal illness or their family members. It allowed us to understand why some need access to assisted dying and that the safeguards implemented with such a law change would actually be better than what currently exists to protect people at the end of their lives.”
According to the Office of Health Economics, each year 50,709 end-of-life patients will die experiencing some level of pain, whilst 5,928 will experience no relief from pain at all during their last three months of life. Dignity in Dying estimates up to 650 terminally ill individuals take their own lives each year, with up to 10 times as many making attempts to end their lives, often using traumatic, dangerous, and painful means.
Assisted dying is currently illegal in the UK, however, it is legal in 26 jurisdictions worldwide including 11 states in the US, Australia and New Zealand, and several other countries across Europe, including Switzerland, Belgium and Luxembourg. In the UK, the Health and Social Care Committee has recently launched a new inquiry to examine different perspectives in the debate on assisted dying. The evidence from this report has been submitted to the Assisted Dying in Jersey Consultation, Assisted Dying – Private Members’ Bill Isle of Man Consultation, and as a Parliamentary Briefing to Members of the Scottish Parliament.
