By Ilaria Bertini.

Finally last week, the Terminally Ill Adults (End of Life) Bill drafted by Kim Leadbeater MP has been published ahead of the Second Reading debate and vote on 29 November 2024.

The proposed law on physician assisted dying (PAD) is mooted as being one of the strictest in the world in ensuring that terminally ill adult patients take the decision to end their life autonomously. However, the Bill encompasses uncertainties on several fronts and notable drawbacks for the actors involved and society at large which cannot be overlooked.

The basic requirement to access PAD, beginning with an initial discussion with a registered medical practitioner, is being a terminally ill, mentally competent adult with a reasonable life expectancy of no more than six months, registered with a GP in England and Wales and ordinarily residing in England and Wales for at least the past year.

From the doctor’s perspective, there is no obligation to raise the subject of PAD, while the doctor is, however, free to raise the subject proactively with a patient. Doctors may also decline to discuss PAD, but they then have a legal duty if the patient expresses an interest in PAD to refer the patient to a practitioner willing to take the conversation further.

After an assessment and referral from a coordinating doctor and a first reflection period of seven days, a second doctor to whom the coordinating doctor refers the patient then independently conducts an evaluation to confirm the findings of the initial assessment. Once the second assessment is complete, a second reflection period begins, normally lasting fourteen days.

At this stage, approval from the High Court (and possibly the Court of Appeal) is required to ensure that all legal and procedural criteria are met, although Court procedures are still unclear. After receiving Court authorization, the patient must provide a second declaration confirming their decision to proceed. Additionally, the coordinating doctor must issue a statement reaffirming their original assessment. Only then is the approved lethal substance made available, which the patient must administer him/herself, while the doctor may closely assist.

The first point that cannot be overlooked here is that if the Bill is approved, PAD becomes, in the eyes of the medical profession, one of the possible medical routes to manage terminal conditions alongside palliative care. This means that PAD becomes a medical treatment alongside more traditional treatments and is considered in the patient’s best interests when certain conditions apply. That outcome would have two significant drawbacks.

In the first place, the medical model means that, by offering PAD, the doctor is in effect saying that it is in the patient’s best interests to die by PAD. In fact, even though PAD assumes the patient is the main actor, doctors themselves are responsible for what they provide:  after all, as the GMC says, “The law does not require doctors to provide treatments or procedures that they have assessed as not being clinically appropriate or not of overall benefit to the patient.”  Hence a doctor who agrees on PAD as an appropriate treatment for a patient would seem to confirm that it is no longer in the patient’s best interests to continue their life, and that PAD is now the best (or a good) alternative. Such action may undermine the doctor-patient relationship, as the Association for Palliative Medicine recently argued, since doctors may offer options that go “beyond the therapeutic to the ending of patients’ life.”

From the patient’s perspective, PAD is not being used to fight a ‘vitalist’ healthcare system where life is promoted at all costs nor a system which overlooks physical pain, unbearable suffering and refractory symptoms. In fact, a pillar of human dignity in the healthcare environment is the fact that patients can refuse medical treatments at any stage even if those treatments are deemed life-saving. And this is the only circumstance where the best interests criterion does not apply. In fact, patients’ refusal to undergo medical treatment takes precedence over doctors’ recommendations.

However, it remains the doctor’s duty to ensure the patient’s comfort and provide guidance on the available options and the consequences of their decisions. It is also important to highlight that, as death approaches and physical pain may become unbearable or symptoms become refractory to treatment, patients have the option to receive deep sedation.

There are moments when physical and mental pain can become so overwhelming that assistance to end one’s own life or the life of a loved one may appear as an act of kindness. Many would question why anyone should endure such suffering and anguish when an approved medication could bring life to an end. Others, however, will emphasize that no person exists in isolation. As human beings we share a responsibility to live in a society that defines us. This responsibility includes a duty of compassion understood as “suffering with” the other person. End of life suffering should be addressed using every tool we have, via holistic palliative care within or outside a hospice, with pain management including where needed deep sedation – measures that must continue to be developed and improved. Whether PAD could ever form part of progress in this area, already highly developed, is a question engaging many doctors, lawyers and MPs at this time.

Author: Ilaria Bertini

Affiliations: Research Fellow, Bios Centre, UK

Competing interests: None declared

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