We should strive for a better national health service – not a national death service

For many of us, the assisted dying debate provokes conflicting emotions. For those who have had the terrible experience of watching a loved one or a patient we have cared for approach their death in anxiety and suffering, it is something we can never forget. Nor can we forget the overwhelming feeling of wishing to see the end come as peacefully, painlessly and quickly as possible.

Yet many of us fear that the proposed legislation in the assisted dying bill – known by its full title as the Terminally Ill Adults (End of Life) Bill – could lead to a situation in which the patient’s needs may not be the only factor that is taken into account, and where proposed safeguards may be circumvented or diluted, in time, to the detriment of patient safety and society’s ethics.

The current debate seems to have surprised many in that, in medicine, the so-called “rule of double effect” already applies. In practical terms, to give a patient relief from pain to such an extent that it shortens their life is acceptable if the primary purpose is the alleviation of their suffering.

In other words, it is morally permissible to perform an action in pursuit of a "good end” while having full knowledge that the action will also bring about “bad results”, ie the death of the patient. This is completely, if subtly, different from an action that is primarily designed to kill the patient, ie purely to bring about “bad results”.

It is an ethical red line whose importance cannot be overstated. Like many doctors, I have been guided in the past by this approach, acting with a clear conscience. I believe that the current legislation fundamentally crosses this red line, bringing with it unintended, but predictable, future risks for patients and for society as a whole.

As a doctor who became a politician, I believe that some of the so-called safeguards around this legislation are completely false. For example, the idea that the conditions set down in the bill cannot be altered in future, preventing the “slippery slope” scenario, is just untrue.

In our political system, no parliament can bind its successor, and so any future changes to widen the scope of the law would be entirely possible. We can see the potential dangers we will face by considering the Canadian experience.

In 2016, Medical Assistance In Dying (MAID) was made legal in Canada for the terminally ill. In 2021, however, the requirement for death to be “reasonably foreseeable” was removed; in addition, the extension to include people with mental illness has been approved in principle, and is due to come into effect in 2027.

In 2022, 13,241 people died in Canada through MAID, accounting for 4.1 per cent of all deaths. This would be the equivalent in the UK of around 30,000 deaths per year. Perhaps most worryingly, more than 35 per cent of those who died by medical assistance in Canada in 2022 reported being motivated by the idea that they were a “perceived burden on family, friends or caregivers”.

The state of Oregon in the USA has expanded the interpretation of “terminal illness” to encompass non-terminal conditions like anorexia, diabetes, hernias and arthritis, and the Netherlands and Belgium have extended the practice to allow euthanasia for children and newborn babies.

In the last parliament, I was responsible for the passage of what is now the Down Syndrome Act, again through the route of a private member’s bill. It sought to provide new safeguards and rights for this vulnerable group in our society, and has been recognised internationally as landmark legislation. The assisted dying bill fills me with fear for this group, and for others with learning disabilities.

Frequently, the first to suffer from any oversight are those least capable of protecting their rights, especially individuals with learning disabilities. The disparities in healthcare for people with Down syndrome are well documented; individuals with learning disabilities are likely to die around 20 years earlier than their peers, face higher risks of neglect and abuse, and are at least three times more likely to die in hospital from preventable or treatable conditions.

We already have the deeply disturbing experience of people with learning difficulties being disproportionately subjected to Do Not Resuscitate orders without proper justification or consent, and there have been instances when families have been coerced to consenting to these measures. This shocking fact highlights the critical importance of scrutinising the ethics of assisted dying legislation, and of ensuring thorough research and consultation before any laws are enacted. 

The hurried introduction of this bill, coupled with insufficient research, consultation, or transparent and robust safeguarding measures, raises serious concerns about its impact on vulnerable populations, including people with learning disabilities.

It is not all bad news, however. One of the positive benefits of the debate around the assisted dying bill has been the spotlight it has shone on the need to improve palliative and end-of-life care in our country.

The NHS in England is currently undertaking an ambitious endeavour to provide “sustainable, responsive, personal palliative and end-of-life care for all, irrespective of age, geography, condition or personal setting”. This is the correct approach to take, but will require more financial investment and greater availability of care personnel if it is to become a reality.

Unlike the assisted dying bill, it will not increase the risks to vulnerable individuals, and neither will it diminish the ethics of our society. We should all strive for a better National Health Service. Not a national death service.