«I just want to die.” How often I have heard that phrase uttered as a way to ask “would I be better off dead?”, to seek reassurance and support, to express fears, or even just to open a conversation on how death will occur. I have seen people who were firm supporters of euthanasia when well who struggle to stay alive against all the odds when dying. And I have often heard people go on to say that they never believed their final days could be so rich and full of love.
When I look at the patients I have seen over the past few months — some suffering from cancer, some with neurological disease, some with chronic conditions — I wonder how they fit into the categories specified by Keir Starmer, the Director of Public Prosecutions, yesterday in his explanation of the law on assisted suicide. He cited as potential mitigation against prosecution that “the victim had a terminal illness or a severe and incurable physical disability or a severe degenerative physical condition from which there was no possibility of recovery”.
The DPP has fallen in to the trap of looking at disease as something that can be neatly categorised.
As a palliative care physician I have looked after thousands of patients who are dying. One startling lesson that I have learnt is that vulnerability in illness is complex and subtle; the strongest people can be the most vulnerable when struck down by illness.
It is almost an inverse relationship — the more controlling a person, the harder it can be to adapt to the reality of uncertainty and the vagaries of disease.
They suddenly feel that their world comes crashing down as they confront a future that they had never envisaged for themselves; they are desperate for ways to regain control. Every aspect of their senses is heightened to signals from others that would once have drifted past unnoticed. It is precisely that sensitivity that makes the terminally ill particularly vulnerable to the influence of others.
Take that simple phrase: “I just want to die.” If pursued at face value, processed as a request to end it all, the patient gets the message: “I agree, you’d be better off dead.”
If, instead, they are asked if there is anything, however small, that can be done to improve today, they get the message: “You are of worth and worth me working hard to try to improve things.”
In our weakest moments even the most faithful love for someone in our care can be challenged by exhaustion and despair. It is precisely this reciprocal love and closeness that can nurture not only self-sacrifice on behalf of the carer, but on behalf of the patient too. Patients may perceive themselves as a burden which coerces them to make the ultimate sacrifice.
So many patients say that they want to die because they are afraid. Assurance that they will be cared for, that there is more that can be done, is enough for the vast majority to find life livable again. For many more, this statement is a way to open up the conversation about how they will die; it is an opportunity to dispel their fears.
Discussions of suicide at present focus on the assister. But the person who dies is the one who is vulnerable to influence. The finality of death means that the law must afford equal protection to all, rather than categorise some as having lives less worthy of protection from coercion.
Patients trust their doctors because they have to — just as we all trust the pilot when we get on an aircraft. If a doctor says that nothing more can be done, that the situation is hopeless, then of course the vast majority of patients will take that at face value and some will plummet into hopelessness and despair.
The DPP’s criteria of terminal illness and other disabling conditions categorises culpability by the medical condition of the victim. The inference that by diagnosis one can define who is less vulnerable is fundamentally flawed.
The DPP notes that those being exploited for financial gain are vulnerable. But detecting coercion in these cases is not straightforward. How do you detect it when so many elderly are concerned to leave a legacy to those they love? What if avarice is disguised behind a compassionate façade?
Sadly I have been taken in by apparently loving families — our whole team believed that a patient’s partner really wanted to support her at home, only to learn after her death that as soon as she was home she had “decided” to leave everything to him and write her own children out of her will.
The DPP had an unenviable task in strange judicial circumstances. He deserves 10 out of 10 for effort, but only 6 out of 10 for content.
Those with severe conditions deserve the best of care. The law requires all of us to respond to dissuade suicide; and if a suicide occurs the facts of the case must be reviewed.
The DPP can temper the law with mercy, but it is not merciful to think that the value placed on the lives of those with illness is lower, that their suicide is OK and that their relatives’ compassion is easily proven.
Ilora Finlay. Baroness Finlay of Llandaff is an independent crossbench peer and Professor of Palliative Medicine at the University of Cardiff.