In February 2023, I had a cellphone name from my brother Nicholas. He sounded calm however his voice quavered barely as, calling me by my household nickname, he stated, “Joth, I’ve received some unhealthy information. I’ve been identified with MND.” It was devastating. Motor neurone illness. He knew, all of us knew, that this was a dying sentence. There may be neither treatment nor remedy. It might simply be a matter of time.
Nick was a famend sculptor. He was sturdy, energetic and far in demand. He had lately completed two commissioned works, a statue of the nice poet for the Pals of Coleridge Society and a memorial for the Royal Faculty of Physicians to honour docs who had died throughout Covid. He knew there would now be no extra sculptures.
He was quickly struggling to climb the steps. He discovered it arduous to eat. Then he couldn’t swallow. He started to shed pounds. He grew to become gaunt, hollow-eyed, wraithlike. To his dismay – he cherished cooking – it grew to become unimaginable for him to take strong meals with out choking. He might odor roast beef however couldn’t eat it. With nice reluctance, figuring out that in any other case he would die of hunger, he agreed to have a tube inserted into his abdomen by which he fed himself with a syringe on a liquid weight-reduction plan of excessive protein meals. He hated it. Earlier than lengthy, his voice light, he slurred his phrases. The illness had seized his throat. By late summer season it grew to become arduous to know him.
Later, he wanted a chairlift to get backwards and forwards to his bed room. He had a mobility scooter and a wheelchair. Inside 9 months of the prognosis, he was barely in a position to transfer. Humiliatingly, he had misplaced management of his bodily features. His solely technique of communication was with a notepad. For somebody who had cherished debate and dialogue, this was a supply of deep frustration. He did his finest to defend his sense of impending horror from Kay, his spouse of fifty years, and from his 4 grown kids, however they knew him too properly and cherished him an excessive amount of to be deceived. He was typically frightened and generally terrified. His frequent choking suits had been horrible to witness. He gasped in useless for breath till on the level when he appeared to be expiring, they ceased as instantly as they’d began. They by no means left him for lengthy.
By the tip of that yr, his as soon as highly effective physique, which had so lately lifted heavy luggage of clay to be moulded into bronze artworks, was limp and helpless. Solely his eyes, marooned in a skeletal body, however nonetheless shiny and stressed, testified to the truth that the illness had spared an ever-fertile, inventive and imaginative thoughts. Till the very finish, he knew precisely what was coming. That finish got here in February final yr, when, together with his household about him, his exhausted physique lastly succumbed. It was nearly to the day a yr from that date when the neurologist informed him bluntly, “I’m afraid you have got motor neurone illness.”
In these intervening months, he and I had quite a lot of intimate conversations, lengthy extracts from which had been broadcast – at his behest – on BBC Radio 4. In these programmes, he was, by turns, sharp, witty, reflective, unhappy, offended and heroically candid. He ended the collection by attempting to sing “At all times Look on the Vibrant Aspect of Life”. Judging by the general public response, listeners had been tremendously moved by what he stated. It was as if they recognised he was the embodiment of Cicero’s admonition: “Stay as courageous males; and if fortune is antagonistic, entrance its blows with courageous hearts.”
At one level, he stated defiantly, “I’m not going to finish up like a trussed-up hen.” Because it occurred, he had no approach of avoiding that prospect. By the point he reached the purpose at which he might need chosen the Dignitas possibility, he was too weak to journey to Switzerland. Nor would he have chosen the lonely suicide route. I do know not whether or not ultimately he would have chosen an assisted dying. I do know that, like me, he had lengthy thought terminally unwell individuals ought to have the authorized proper to terminate their very own lives. As a dying man, it was with extra ardour than ever that he believed others ought to have the selection he by no means would.
With the assisted dying invoice – formally the Terminally Unwell Adults (Finish of Life) Invoice – starting its journey by the Commons, Nick inspired me so as to add my voice to these hundreds of thousands who, for private, ethical and social causes, had been campaigning for the prevailing regulation to be modified. I adopted the invoice’s progress rigorously and shared the reduction of that nice majority of the British inhabitants when, after exhaustive scrutiny, Kim Leadbeater’s non-public member’s invoice secured cross-party help on a free vote, and it was despatched off to the Lords.
I thought the Higher Home would play its correct half as a revising chamber, searching for to enhance the invoice by figuring out any perceived flaws and frailties. I couldn’t have been extra unsuitable. As a substitute, a really small however outstanding group of friends have tried to strangle the invoice by filibustering it to dying. This isn’t solely an egregious misuse of their constitutional rights however betrays a panoramic disregard for the desire of the elected chamber and for the British public who’ve persistently proven overwhelming help for the brand new regulation.
Friday 5 December marks the third day of the invoice’s committee stage. Within the first two days, their lordships managed to debate solely 28 of over 1,100 amendments, the variety of which is rising by the week. In accordance with Hansard it has “way more amendments at this stage of the legislative course of than every other invoice”; it’s unprecedented. At this price some 40 extra Fridays could be wanted earlier than the invoice might transfer to the report stage, which might be lengthy after the present session of parliament ends in Could subsequent yr. Eight friends have between them conjured up greater than 60 per cent of that modification complete. Like all different opponents of the invoice, they’re after all entitled to share Theresa Could’s outlandish and crudely expressed view that it’s a “licence to kill” invoice. However they’re absolutely not entitled to realize their ends by what Lord Falconer – who, courteously and persistence, is searching for to steer the Leadbeater invoice by the Lords – has described as “parliamentary shenanigans”.
A look at these 28 amendments which have up to now been debated makes it arduous to withstand the conclusion that “shenanigans” is a well mannered approach of placing it. Some are so tangential as to be of marginal relevance. Others are so nit-picking as to be frivolous. Many appear designed merely to offer their authors an opportunity to repeat at size their implacable opposition to any such invoice. I ponder what number of of those people have spared a thought for the trauma their proposed modifications may trigger dying individuals and their family members:
Lord Frost (who has submitted 15 amendments) seeks to vary the title of the “voluntary assisted dying commissioner” to “commissioner for the availability of medical assist to commit suicide”, one in all a number of amendments designed to insert the phrase “suicide” into the invoice.Does he know that many psychologists and charities counsel in opposition to using the time period besides by specialists or the judiciary as a result of stigma hooked up to it and the worry it will probably induce in individuals determined sufficient to take their very own life?
Lord Hunt (18 amendments) would forestall a terminally unwell particular person from buying the suitable to an assisted dying if any shut relative had been convicted of, or is beneath investigation for, fraud or tax evasion. Does he actually imagine that harmless people who’re dying must be penalised for the actions of others for which they bear no duty?
Baroness Hollins (29 amendments) urges that the method of assisted dying must be filmed in its entirety. Does she not see that this may be a merciless intrusion on the privateness of a dying particular person and their household? That it might deal with everybody concerned as potential criminals?
Baroness Coffey (72 amendments) would deny an assisted dying to any terminally unwell one who has left the UK within the earlier 12 months. Is she conscious this may forestall that particular person from taking a final vacation or make a farewell go to to members of the family residing overseas?
Baroness Gray-Thompson (131 amendments) would require anybody – her modification as drafted doesn’t spare males – searching for an assisted dying to supply “a destructive being pregnant take a look at”. Would she critically wish to withdraw the suitable to train their reproductive rights from the terminally unwell?
Baroness Finlay (a record-breaking 169 amendments) would change the time period “capability” within the invoice – an idea which is already embedded in medical apply by way of the 2005 Psychological Capability Act – with the phrase “means”. Does she not realise (I think she does) that this may require the creation of a wholly new authorized framework which couldn’t presumably be established for a lot of months, if not years?
Taken collectively, it’s arduous to flee the conclusion that the overriding function of the cascade of amendments which might be but to be debated is calculated to thwart the desire of the nation. Till very lately – with solely two extra days left for the committee stage – it regarded as if the anti-bill zealots would succeed. However on 26 November, in an announcement buried by the Funds, the federal government allotted ten additional days, beginning within the new yr, for friends to debate the invoice. In principle this may permit it to finish its passage by the Lords in time for it to be handed into regulation by the tip of Could subsequent yr. In principle.
It’ll solely occur if these smart opponents of the invoice disavow the disgraceful antics of a small minority of their midst and take a stand in opposition to blatant abuses of their duties. They would wish to agree a timetable with Lord Falconer that permits the invoice to proceed as constitutional conference dictates. In the event that they don’t, they’ll deliver the Higher Home into enduring disrepute. They may have defied the Commons and, way more importantly, may have stood by because the beliefs of a minority override the desire of the British individuals. Such conceitedness wouldn’t simply be forgiven.
Whereas he was nonetheless in a position to converse, my brother used to say in mock menace, “I gained’t be going away; my spirit will nonetheless be right here, watching on.” It’s nonetheless there at his dwelling, among the many swallows that swoop and dive into the eaves, the goldcrests that rise in a cloud from the meadow grasses, the nice oak tree which rustles within the breeze. That spirit is benign however resolute, and it might have a easy message for his or her lordships: “Don’t pressure others to endure as I did. Do the suitable factor earlier than it’s too late.”
[Further reading: What we demand of Epstein’s victims]