LONG READ: ‘We have to listen to our patients. It is after all their body’: Jersey GP on assisted dying debate
Even when doctors have just been surveyed on the subject, it still feels awkward to ask a GP about ending the life of a patient.
Despite the way that the results of a recent survey, answered by around a third of local doctors, have been used by those on both sides of the debate, they do not provide conclusive assistance. Was the notable thing the majority who thought it, sometimes or always, acceptable in given circumstances to assist someone with an incurable condition to end their life? Or was it the minority – a significant proportion, nonetheless – who thought it never acceptable in any circumstances?
Dr Nigel Minihane, chairman of the Jersey Primary Care Body, accepts that views within the profession are as polarised as those held by the public. Yet he detects a shift in the centre ground of public opinion to which the profession is starting to respond at national level.
‘We have to listen to our patients and it would appear that the public at large actually feels that a patient’s autonomy is something that has largely been ignored by the medical profession. Something like 80%-plus of the public are saying that we should be considering assisted dying and it would perhaps be rather arrogant of the profession not to listen’, he said.
Certainly, the signs nationally are that the official opposition to assisted dying may be being replaced by a more nuanced position. The Royal College of Physicians decided in March this year that it would take a ‘neutral’ position on the question, while the Royal College of GPs, which is currently opposed, is due to ballot its 53,000 members again shortly.
One of the things that makes the assisted dying debate so difficult is that the often distressing circumstances envisaged by the desire to escape life come into conflict with safeguarding the interests of the potentially vulnerable. But to talk about those circumstances with a doctor concentrates the mind.
‘In some situations, it is not so much the pain but the mode of death that might be severe. For example, there are rare conditions where a tumour might erode into an artery and there’s nothing you can do. It is going to burst and people are literally going to bleed to death.
‘It’s one of those circumstances where it’s ethically acceptable now to give terminal sedation [a substantial dose of morphine beyond that required for pain relief], but at the moment that’s only acceptable when that situation actually occurs. If someone knows that is the mode of death, would you look at it differently?’ Dr Minihane asks.
Such dilemmas appear to transcend the normal boundaries of palliative – or supportive, as it is now known – care where the doctor ensures that the patient has access to appropriate symptom control throughout their illness. ‘Some of that is curative but some of it is about making sure life is bearable,’ Dr Minhane said.
Central to the debate is the patient’s right to choose. Whereas in the past you might have visited a doctor expecting to be told what do to, the assumption today is that, equipped with the relevant information – what Dr Minihane calls the doctor’s ‘braindump’ on a particular condition – a patient will make his or her own informed decision about their best interests.
Yet problems arise with patient autonomy when supportive care simply does not work and the patient’s pain cannot be controlled by the prescribed drugs, or when they do not want to endure their illness and the palliative treatment.
‘If they know they are on a trajectory to death or unbearable suffering what about their decision then? It is, after all, their body.’
For Dr Minihane the patient-doctor dialogue which takes place in relation to a minor complaint – whether, for example, to take antibiotics for the condition – should also take place in relation to serious illness.
‘At the cancer end of life the same should apply. We tell a patient: this is what we can do. We can’t cure you but this is how we can make life better for you. But perhaps the autonomy which we have made the central pillar of what we do isn’t being addressed in the same way at the end of life as it might be,’ he said.
The present position is clear legally. Both assisted dying, where patients are given a cocktail of drugs to take that will end their life, or euthanasia when their death is brought about by a third party are not paths available here.
‘In these situations we have to point out that it is illegal and we point out all the alternatives. What we are trying to ensure is that people have their symptoms controlled so that we can give them the best quality of life for as long as possible.
‘For me that’s no different from what we do everyday as a doctor so, whether someone comes into the surgery with a cold or cancer, I often say to them my job is to make life as good as I can for you for as long as I can. There may be other circumstances that prevent me from doing so but that’s my job.’
However, it is precisely those ‘other circumstances’ which lie at the heart of the current debate, situations when the suffering of the patient or the patient’s attitude to their situation mean that they cannot exercise their own control in the way they might wish.
‘I remember seeing one gentleman years ago with a cancer of the lower bowel which had eroded through the bowel and went into part of his spinal cord and the peripheral nerves, and he died in severe pain. His mother came to me afterwards and her words echo in my head, “My son died in pain” and I had to agree that he did.’
Central to the debate about assisted dying is the question of safeguards. How to ensure, if the law were changed, that only those in agreed circumstances, governed by their medical condition and its prognosis, and free from coercion would be able to obtain help to die.
The difficulty was brought into sharp focus during one of this year’s BBC Reith Lectures given by former Supreme Court – and former Jersey Court of Appeal – judge Lord Jonathan Sumption who was challenged by a member of the audience to say whether he would support changing the law to permit assisted dying.
The lady who posed the question had been investigated by the police, having returned from Switzerland where she had taken her terminally ill husband to die. She was understandably distressed by the experience.
But Lord Sumption told her that the law should continue to make helping someone die a criminal offence, even if there was also acceptance that, in certain circumstances, it was right for people to break that law.
For Dr Minihane, the exchange has to be understood in the wider context of the lecture’s theme: the need for the courts not to intrude into affairs which are properly the territory of political decision-making. It is for the legislature rather than the judiciary to decide whether assisted dying is legal and, if it is, the circumstances in which it should be permitted.
What he calls those ‘specific delineated safeguards’ might include the patient’s terminal prognosis, their view that it was in their own best interests and the fact that they had capacity to make the decision.
Yet the recent local survey of doctors’ opinions highlights a further issue if the law were to be changed – the freedom of the doctor to opt out if they entertained honest objections.
‘If the law were changed I think one would have to look at it in a similar way to the abortion debate where there are “conscientious objectors” among the medical profession who will not deal with abortion because of their religious convictions and it’s entirely appropriate that that remains’.
Dr Minihane sees an interesting distinction between the abortion debate which is about the mother’s choice in relation to an unborn child – within limits set out by the law – and the debate about assisted dying which involves dealing with a person who has the capacity to make a decision about themselves with appropriate safeguards.
So what about the view of Dr Nigel Minihane, not as a spokesperson for the Primary Care Body but as a general practitioner himself?
‘I think I would say that the important aspect is autonomy. I have changed my practice over the years and it’s all about the patient, the person in front of you and what they want.
‘If things are within the law and it’s something which in all conscience I can do then it’s something that I would consider. However, until the law is passed and the safeguards are established I couldn’t give a full opinion,’ he said.