The proposed legislation that would give terminally ill adults in England and Wales the right to be provided with assistance to end their own lives is not fit for purpose as currently drafted, experts have warned.
A team of researchers from King's have proposed a number of fundamental amendments to the Terminally Ill Adults (End of Life) Bill, which is undergoing a Second Reading in the House of Lords, after MPs voted to back the Bill in June.
The group of experts say the Bill needs several changes before it can function as a workable framework, and to strengthen safeguards for patients, professionals and wider society.
Among their suggestions, they propose the introduction of compulsory palliative care assessments, explicit guidelines on what to do when there are medical complications during the assisted dying process, and a detailed reporting system to continuously evaluate the Bill and ensure patient safety.
Professor Alex Ruck Keene KC (Hon), Professor Gareth Owen and Professor Katherine Sleeman - all members of the Complex Life and Death Decisions (CLADD) Group based at King's - have combined expertise spanning psychiatry, palliative care, bioethics, public policy and law.
They lead research in life and death decision-making (particularly in relation to mental health conditions and palliative care), contribute to policy development, professional guidelines and law reform, and have appeared in leading court cases.
In a briefing note shared with Peers in the House of Lords, as well as medical advisory boards and professional bodies, the team outlines nine overarching reasons for change, arguing that the Bill:
- Fails to clearly define which terminally ill patients would be eligible.
- Applies a test for determining a person's ability to seek assistance which is not fit for its purpose.
- Is unclear as to whether the provision of assistance is to be considered medical treatment, and hence something would fall within the remit of conventional medical practice.
- Does not appropriately address the role of palliative care in the process.
- Does not facilitate input from multi-disciplinary experts early enough in the decision-making process when determining a person's eligibility for assisted dying.
- Provides for independent advocacy without clarity on whether it is a service to enable navigation of the processes provided for under the Bill, or a service to support people to have capacity to decide to end their own life or make requests for assistance to end their own life.
- Establishes an authorisation body which is both over- and under-protective, by being too complex for entirely straightforward cases, and not equipped with sufficient powers to address more difficult cases.
- Fails to adequately address what will happen in a situation where a person experiences complications following the provision of assistance.
- Has no appropriate monitoring system in place to track how the law is being used and ensure the safety of patients.
This legislation needs to reflect the realities of the issues at stake. Determining eligibility to seek assistance in ending one's own life is inherently multi-faceted. That, in turn, means that multi-disciplinary consideration is vital. At present, the Bill provides for such consideration too late, with the wrong people, and in the wrong form."
Professor Alex Ruck Keene KC (Hon), Professor of Practice
Any legislation that gives terminally ill adults the right to request that clinicians and the NHS assist them with the decision to end their own lives must be approached with the utmost caution and clarity. The decision is an existential choice not a treatment, and the roles are not conventional ones for clinicians or the NHS. The criteria for assessing a person's capacity to make such a profound decision must be explicitly defined and smartly safeguarded. This isn't just another policy decision or legal formality - it is an ethical imperative."
Professor Gareth Owen, Professor of Psychological Medicine, Ethics and Law
Any legal framework around assisted dying must recognise the essential role of palliative care in relieving the symptoms and suffering of people approaching the end of life. Without access to high-quality palliative care, there is a risk that individuals may decide to have an assisted death, not because their suffering is untreatable, but because they haven't had access to the care that they need. Although we know that palliative care is most effective when provided over a number of months, by ensuring that everyone who requests an assisted death has at least one palliative care assessment, we would reduce - though not remove - this risk."
Professor Katherine Sleeman, Professor of Palliative Care
Currently, the Terminally Ill Adults (End of Life) Bill states that terminally ill people would be allowed to end their life if they meet the following criteria:
- Are over 18, live in England or Wales, and have been registered with a GP for at least 12 months.
- Have the mental capacity to make the choice and be deemed to have expressed a clear, settled and informed wish, free from coercion or pressure.
- Have a terminal illness and are expected to die within six months.
- Make two separate declarations, witnessed and signed, about their wish to die.
- Satisfy two independent doctors and a panel comprising a lawyer, a social worker and a psychiatrist that they are eligible.
Once an application is approved, the individual would be required to wait a minimum of 14 days before taking any further steps. During this time, a doctor would prepare the life-ending medication, but it would be the patient themselves who has to administer it.
