In February 2023, I had a phone call from my brother Nicholas. He sounded calm but his voice quavered slightly as, calling me by my family nickname, he said, “Joth, I’ve got some bad news. I’ve been diagnosed with MND.” It was devastating. Motor neurone disease. He knew, we all knew, that this was a death sentence. There is neither cure nor treatment. It would just be a matter of time.
Nick was a renowned sculptor. He was strong, active and much in demand. He had recently finished two commissioned works, a statue of the great poet for the Friends of Coleridge Society and a memorial for the Royal College of Physicians to honour doctors who had died during Covid. He knew there would now be no more sculptures.
He was soon struggling to climb the stairs. He found it hard to eat. Then he could not swallow. He began to lose weight. He became gaunt, hollow-eyed, wraithlike. To his dismay – he loved cooking – it became impossible for him to take solid food without choking. He could smell roast beef but could not eat it. With great reluctance, knowing that otherwise he would die of starvation, he agreed to have a tube inserted into his stomach through which he fed himself with a syringe on a liquid diet of high protein food. He hated it. Before long, his voice faded, he slurred his words. The disease had seized his throat. By late summer it became hard to understand him.
Later, he needed a chairlift to get back and forth to his bedroom. He had a mobility scooter and a wheelchair. Within nine months of the diagnosis, he was barely able to move. Humiliatingly, he had lost control of his bodily functions. His only means of communication was with a notepad. For someone who had loved debate and discussion, this was a source of deep frustration. He did his best to shield his sense of impending horror from Kay, his wife of 50 years, and from his four grown children, but they knew him too well and loved him too much to be deceived. He was often frightened and sometimes terrified. His frequent choking fits were terrible to witness. He gasped in vain for breath until at the point when he seemed to be expiring, they ceased as suddenly as they had started. They never left him for long.
By the end of that year, his once powerful body, which had so recently lifted heavy bags of clay to be moulded into bronze works of art, was limp and helpless. Only his eyes, marooned in a skeletal frame, but still bright and restless, testified to the fact that the disease had spared an ever-fertile, creative and imaginative mind. Until the very end, he knew exactly what was coming. That end came in February last year, when, with his family about him, his exhausted body finally succumbed. It was almost to the day a year from that date when the neurologist told him bluntly, “I am afraid you have motor neurone disease.”
In those intervening months, he and I had a number of intimate conversations, long extracts from which were broadcast – at his behest – on BBC Radio 4. In those programmes, he was, by turns, sharp, witty, reflective, sad, angry and heroically candid. He ended the series by trying to sing “Always Look on the Bright Side of Life”. Judging by the public response, listeners were greatly moved by what he said. It was as though they recognised he was the embodiment of Cicero’s admonition: “Live as brave men; and if fortune is adverse, front its blows with brave hearts.”
At one point, he said defiantly, “I am not going to end up like a trussed-up chicken.” As it happened, he had no way of avoiding that prospect. By the time he reached the point at which he might have chosen the Dignitas option, he was too weak to travel to Switzerland. Nor would he have chosen the lonely suicide route. I know not whether in the end he would have chosen an assisted death. I do know that, like me, he had long thought terminally ill people should have the legal right to terminate their own lives. As a dying man, it was with more passion than ever that he believed others should have the choice he never would.
With the assisted dying bill – formally the Terminally Ill Adults (End of Life) Bill – beginning its journey through the Commons, Nick encouraged me to add my voice to those millions who, for personal, moral and social reasons, were campaigning for the existing law to be changed. I followed the bill’s progress carefully and shared the relief of that great majority of the British population when, after exhaustive scrutiny, Kim Leadbeater’s private member’s bill secured cross-party support on a free vote, and it was sent off to the Lords.
I presumed the Upper House would play its proper part as a revising chamber, seeking to improve the bill by identifying any perceived flaws and frailties. I could not have been more wrong. Instead, a very small but prominent group of peers have tried to strangle the bill by filibustering it to death. This is not only an egregious misuse of their constitutional rights but betrays a breathtaking disregard for the will of the elected chamber and for the British public who have consistently shown overwhelming support for the new law.
Friday 5 December marks the third day of the bill’s committee stage. In the first two days, their lordships managed to debate only 28 of over 1,100 amendments, the number of which is growing by the week. According to Hansard it has “far more amendments at this stage of the legislative process than any other bill”; it is unprecedented. At this rate some 40 more Fridays would be needed before the bill could move to the report stage, which would be long after the current session of parliament ends in May next year. Eight peers have between them conjured up more than 60 per cent of that amendment total. Like all other opponents of the bill, they are of course entitled to share Theresa May’s outlandish and crudely expressed view that it is a “licence to kill” bill. But they are surely not entitled to achieve their ends by what Lord Falconer – who, with courtesy and patience, is seeking to steer the Leadbeater bill through the Lords – has described as “parliamentary shenanigans”.
A glance at those 28 amendments which have so far been debated makes it hard to resist the conclusion that “shenanigans” is a polite way of putting it. Some are so tangential as to be of marginal relevance. Others are so nit-picking as to be frivolous. Many seem designed merely to give their authors a chance to repeat at length their implacable opposition to any such bill. I wonder how many of these individuals have spared a thought for the trauma their proposed changes might cause dying people and their loved ones:
Lord Frost (who has submitted 15 amendments) seeks to change the title of the “voluntary assisted dying commissioner” to “commissioner for the provision of medical help to commit suicide”, one of several amendments designed to insert the word “suicide” into the bill.Does he know that many psychologists and charities counsel against the use of the term except by specialists or the judiciary due to the stigma attached to it and the fear it can induce in people desperate enough to take their own life?
Lord Hunt (18 amendments) would prevent a terminally ill person from acquiring the right to an assisted death if any close relative had been convicted of, or is under investigation for, fraud or tax evasion. Does he really believe that innocent individuals who are dying should be penalised for the actions of others for which they bear no responsibility?
Baroness Hollins (29 amendments) urges that the process of assisted dying should be filmed in its entirety. Does she not see that this would be a cruel intrusion on the privacy of a dying person and their family? That it would treat everyone involved as potential criminals?
Baroness Coffey (72 amendments) would deny an assisted death to any terminally ill person who has left the UK in the previous 12 months. Is she aware this would prevent that person from taking a last holiday or make a farewell visit to family members living abroad?
Baroness Grey-Thompson (131 amendments) would require anyone – her amendment as drafted does not spare men – seeking an assisted death to provide “a negative pregnancy test”. Would she seriously want to withdraw the right to exercise their reproductive rights from the terminally ill?
Baroness Finlay (a record-breaking 169 amendments) would replace the term “capacity” in the bill – a concept which is already embedded in medical practice via the 2005 Mental Capacity Act – with the word “ability”. Does she not realise (I suspect she does) that this would require the creation of an entirely new legal framework which could not possibly be established for many months, if not years?
Taken together, it is hard to escape the conclusion that the overriding purpose of the cascade of amendments that are yet to be debated is calculated to thwart the will of the nation. Until very recently – with only two more days left for the committee stage – it looked as though the anti-bill zealots would succeed. But on 26 November, in an announcement buried by the Budget, the government allocated ten further days, starting in the new year, for peers to debate the bill. In theory this would allow it to complete its passage through the Lords in time for it to be passed into law by the end of May next year. In theory.
It will only happen if those sensible opponents of the bill disavow the disgraceful antics of a small minority in their midst and take a stand against blatant abuses of their responsibilities. They would need to agree a timetable with Lord Falconer that allows the bill to proceed as constitutional convention dictates. If they don’t, they will bring the Upper House into enduring disrepute. They will have defied the Commons and, far more importantly, will have stood by as the beliefs of a minority override the will of the British people. Such arrogance would not easily be forgiven.
While he was still able to speak, my brother used to say in mock threat, “I won’t be going away; my spirit will still be here, watching on.” It is still there at his home, among the swallows that swoop and dive into the eaves, the goldcrests that rise in a cloud from the meadow grasses, the great oak tree which rustles in the breeze. That spirit is benign but resolute, and it would have a simple message for their lordships: “Don’t force others to endure as I did. Do the right thing before it is too late.”
[Further reading: What we demand of Epstein’s victims]
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This article appears in the 04 Dec 2025 issue of the New Statesman, Books of the Year