Motor neuron disease is not uncommon, and every GP will look after some patients with it during their working life. I remember one man who was diagnosed in his early fifties. He was a teacher with teenage children, and the whole family was very badly affected. The disease progressed very quickly and he soon had to give up work, so there were financial problems, and the local community helped to raise money for him and his family. I visited him many times at home once he could no longer get out, and he was very stoical, but I don’t remember discussing end-of-life issues with him, apart from reassuring him that he would get all the care he needed. Perhaps I should have, although at the time assisted dying was not in the picture – this was before the option of going to Switzerland.  He died quite suddenly at home; I had visited him with a chest infection the day before and given antibiotics, and he hadn’t seemed all that ill, but he died peacefully in the night. I wondered at the time whether I should have sent him into hospital the day before, but hadn’t considered it seriously – he seemed to be doing OK and it was early in the illness. The family thought it was the best outcome, and he didn’t suffer.

Nowadays treatment would be much more pro-active than that, and he would probably have gone into hospital and had assisted ventilation, and his life would have been prolonged, possibly quite considerably, sometimes beyond the point at which he had any sort of quality of life. So everything gets a lot more complicated, for patients and doctors.

Assisted dying is a big issue at the moment. At the moment it is not illegal to try to commit suicide, but it is illegal for anyone, doctor or other person, to assist a person to take his own life. But patients suffering from illnesses such as motor neuron disease are usually physically unable to do this on their own, and some have asked that the law be changed to allow someone, a doctor or other designated person, to help them die.

This would put doctors in a very difficult position. Doctors are committed to saving life, not ending it, and the profession is deeply split between whether to support any attempt to change the law. At present Lord Charles Falconer’s Assisted Dying Bill, ¹ a private members’ bill tabled last May, is going through parliament. In general, doctors who work as specialists in palliative care are vehemently opposed to any change in the law, as they strive to improve the care of people in their last days as much as possible. Many others are also very much against it, often because they worry patients will be coerced into agreeing, when they wouldn’t have wanted it otherwise. But other GPs are in favour in principle, although worried about the legal consequences of actually doing so, and want certainty in the legal process above all else. That is certainly my view.

Survey after survey of the general public however shows a large majority, even of religious people and disabled people, to be in favour of a change in the law to allow assisted dying for certain groups of people.² They think people should have a right to choose when to die under some circumstances. It is true that the law at present is in complete confusion. Courts have been reluctant to punish people when they have acted in good faith to help their loved ones achieve their aim. One might say the present situation discriminates against those who are most likely to want to end their lives, because of their physical difficulties.

This week the Royal College of General Practitioners  (RCGP) recommended continuing its opposition to a change in the law,³ following its own consultation. 77% of the 1,700 RCGP members responding said the college should maintain its opposition. But how much weight should be put on the opinion of doctors’ leaders? The British Medical Association, representing its members who are doctors in every speciality, including GPs, continues to vote in its annual meeting to oppose a change in the law.⁴ But last year a poll in a medical newspaper⁵ showed that 38% of 689 GP respondents said they favoured the college adopting a neutral stance on assisted dying, while 31% said the college should go even further and support a change in the law to allow doctors to help the terminally ill patients to die in the UK.

Neither the RCGP nor the newspaper poll was at all representative. The medical newspaper response rate, where the questions were wide ranging and included many other issues, was 1.4% and the RCGP one was 3.5% and was deliberately not widely publicised. Probably both included many of those who had very strong views on the subject.

So should doctors’ associations have influence here? Doctors have a vested interest – some will be involved in a professional role, others worry about the religious and ethical problems that might affect professional practice. This is right and proper. But their experiences are and viewpoints are complicated by their responsibilities and so may be different from those of non-doctors. Our parliamentary process should rightly include medical views on the matter, but no-one knows whether doctors’ leaders organisations actually represent the views of their members. RCGP members during the consultation said they wanted the College to take a “leadership role”, and to influence other institutions, such as the House of Lords, which is still an unelected chamber of the “great and the good”.  But Dr Clare Gerada, until recently the Chair of the RCGP, in a personal view, believes that doctors’ leaders should stand aside from the debate.

“The decriminalisation of assisted dying should be a matter for society as a whole to decide, using established parliamentary processes. No particular group within it should have a disproportionate influence on this decision; in particular medical bodies should not impose the beliefs of some of their members on to patients and carers and oppose (or indeed support) a law on assisted dying.”   She goes on “The role of the medical profession is to advise on such things as assessing prognosis and setting guidelines for the best possible end-of-life care, and to ensure that the views of patients themselves gets priority. They should be concerned with areas of regulation, monitoring, and implementation, not with whether the law gets passed or not”⁶

From my personal experience I know that what patients want can change. I had a patient once who had made a “living will” (advance directive) specifying a wish not to continue living with particular disabilities, but when that actually happened, he changed his mind and accepted treatment. The will to live is indeed very strong in all of us. I am sure that in many cases of terminal illness a knowledge that people can end their lives at a time of their choosing in fact will mean that they do not feel they have to do so prematurely, and is a great comfort. Each case has to be considered very carefully whatever the law says.

But the recent decision of the RCGP to maintain its opposition to assisted dying should have no special weight when our lawmakers consider this issue. Nor should it influence people when they decide what they might want if they were in that position, nor whether or not to support a change in the law. Paternalistic decisions by doctors have no place in the modern world – a doctor’s duty is first and foremost to treat, help and advise a patient to the best of her ability in accordance with the patient’s wishes.

1. http://services.parliament.uk/bills/2013-14/assisteddying.html
2. http://www.dignityindying.org.uk/assisted-dying/public-opinion/
3. RCGP http://www.rcgp.org.uk/policy/rcgp-policy-areas/assisted-dying.aspx
4. http://bma.org.uk/practical-support-at-work/ethics/bma-policy-assisted-dying
5. http://www.pulsetoday.co.uk/clinical/therapy-areas/elderly-care/more-than-two-thirds-of-gps-think-rcgp-should-change-stance-on-assisted-dying/20005114.article#.Uwntvf2s1g0
6. http://www.livinganddyingwell.org.uk/sites/default/files/LDW%20-%20Medicine%20-%20BJGP%20-%20Gerada%20-%20Neutrality.pdf