Not Terminal

It’s fourteen years​ since, without warning, my handwriting collapsed. Noting the oral arguments in the Court of Appeal in the final week before I had elected to retire, I found that I could no longer form the letter g. Other letters followed, until by the end of the week I was unable to produce more than a scrawl. Not even a treasured fountain pen could save it. It all became, as Anne Carson on behalf of us Parkinsonians says, ugly.* What happened next was entirely unexceptional. In Oxford, where I had become a visiting professor, the neurologist, a thoughtful and likeable man whom I still see yearly, confirmed the diagnosis of Parkinson’s disease and reassured me that it was not fatal: ‘You don’t die of Parkinson’s; you die with it.’

I now know that they all say that. But what intervenes becomes a season in hell, a life sentence. Simple things like buttons start to defeat you. You may feel constantly bilious. Your handwriting becomes illegible, the fountain pen redundant. Five miles with a walking group of elderly dons became too much for me. When I ceased to be able to manage even two miles I had to give up. Miles? I now measure my walking range in yards. You become a messy eater. You start to converse in monosyllables. Every step is taken in the knowledge that it can end in a fall and every fall in a fracture. You avoid answering the phone in case you sound drunk. Your voice dries up mid-sentence. A decent night’s sleep becomes a distant memory. You may have visual hallucinations.

The charity Parkinson’s UK, which is neutral on assisted dying, spells it out:

Parkinson’s is a progressive, fluctuating neurological disorder which is degenerative. Despite advances in treatment, there is no known cure. The advanced stages of Parkinson’s can be very difficult to cope with. The symptoms of advanced Parkinson’s can include pain, fatigue, problems with swallowing, breathlessness, weight loss, frailty and other issues. It is also very common for people with advanced Parkinson’s to have other serious health conditions. Both Parkinson’s and other conditions increase the risk of infections, and other life-threatening situations, developing.

‘It’s quite interesting to see myself slipping away,’ Billy Connolly says. ‘I don’t have the balance I used to have. I don’t have the energy I used to have. I can’t hear the way I used to hear. I can’t see as good as I used to. I can’t remember the way I used to remember. And they all came one at a time and they just slipped away.’ You could say that this is no more than an account of growing old. But not quite. My former colleague Nicholas Mostyn writes gloomily that ‘we will likely lose speech, mobility and continence and be beset by excruciating pain – but no doctor will ever give us a terminal diagnosis.’ Many of us are reliant, as I am, on a patient, tireless, uncomplaining and infinitely generous spouse for whom, as for us, no end is in sight.

But why should a terminal diagnosis matter? It matters because Kim Leadbeater’s bill currently before Parliament will allow an assisted death only where the condition is terminal, which Parkinson’s is considered not to be. Indeed its sting lies in the combination of indeterminacy and durability. The kind of terminal illness covered by the bill is ‘an inevitably progressive illness or disease which cannot be reversed by treatment’ – so far so good – and in consequence of which the patient’s death ‘can reasonably be expected within six months’.

Thus the medical slip road – adopting the minimalist criterion used by, among others, the campaign group Dignity in Dying – is available to patients whose condition, though terminal, is bearable either with or without medication, but is barred to those with a condition which, though unbearable and incurable, will not on balance of probability prove fatal within the next six months. Parkinson’s is not the only such condition. Another instance was the cruel case of Tony Nicklinson who was left after a stroke unable to do anything except ask to be allowed to die. A majority of the Supreme Court decided they had to leave it to Parliament.†

It seemed simply an added frustration when the NHS speech therapist to whom I had been referred told me she was returning to the family home in Greece where she and her father, a retired sea captain, keep bees. But, on reflection, there seemed no reason not to continue our weekly half-hour sessions using Zoom or Skype, and it has been working out well. If I describe it here, it’s not to support the case against assisted dying but to recount how these months and years of physical decline have in some measure been brightened and offset.

Elina uses the Lee Silverman method, which aims to get you speaking loudly without loss of clarity. This requires shared material which she can follow at her desk in suburban Athens while I read it to camera in rural Bucks. When, for starters, I suggested Kipling’s ‘If–’, her groan gave me all the guidance I needed. She was educated in a French school in Greece, and since I’d done French to scholarship level and had taken my degree in English literature, we could use texts in either language. In five years, we’ve picked our way through Ronsard, Tennyson, Edward Lear, Wendy Cope, Baudelaire, Verlaine, Yeats, Herbert, Donne, Larkin, Housman (who, I discover, admitted to his French translator that he had never spent much time in Shropshire), John Clare, A.A. Milne, Shelley, Blake, Eliot (Macavity, not Prufrock) and – thanks to Seamus Heaney and Ted Hughes’s Rattle Bag, and Geoffrey Grigson’s anthology Unrespectable Verse – a swarm of lesser-known poets.

Among these has been Charles Causley, whose hard-bitten classic ‘Timothy Winters’ can fetch tears:

Timothy Winters has bloody feet
And he lives in a house on Suez Street,
He sleeps in a sack on the kitchen floor
And they say there aren’t boys like him any more …

The Welfare Worker lies awake
But the law’s as tricky as a ten-foot snake,
So Timothy Winters drinks his cup
And slowly goes on growing up.

Oliver St John Gogarty’s gravelly and not always decent wit has also lit up our weekly sessions. An ENT surgeon, an athlete (at sixteen he was playing professional football for Preston North End), a seriously crazy motorist and a founding member of Sinn Féin, Gogarty supported the Free State settlement of 1922 and became a senator. Kidnapped and awaiting execution by the IRA, he escaped by throwing his coat over his guard’s head and swimming across the Liffey on a January night. Joyce cast him as Buck Mulligan in Ulysses. His parody of Keats, ‘On first looking through Krafft-Ebing’s Psychopathia Sexualis’, concludes:

And retrospective thoughts and doubts did rise –
Was I quite normal when my life began
With love that leans toward rural sympathies
Potent behind a cart with Mary Ann?

But for Grigson neither of us would have encountered Thomas Love Peacock’s acidulous take on England’s hypocritical Sunday observance laws:

The rich man is invisible
In the crowd of his gay society
But the poor man’s delight
Is a sore in the sight
And a stench in the nose of piety.

The rich man goes out yachting
Where sanctity can’t pursue him;
The poor goes afloat
In a fourpenny boat
Where the bishop groans to view him.

Byron only just scraped onto the reading list. When I first proposed him, Elina looked blank. ‘But he’s one of your national heroes,’ I said. ‘Ah,’ she said. ‘You mean Lord Viron.’

The last time an assisted dying bill came before the Commons, in 2015, it was voted down by a substantial margin. This time, at the end of November, the Commons voted by a majority of 55 to give Leadbeater’s Terminally Ill Adults (Assisted Dying) Bill a second reading (the first reading is a formality). In other words, assisted dying now has the support of a clear majority of MPs. In the intervening years public opinion has been consistently ahead of them, with between 70 and 80 per cent of those surveyed supporting it in principle.

There remains a considerable obstacle course, with hurdles placed at every possible point by the bill’s ill-wishers. It could be argued that the bill is weakened by its adoption of the six months to live test, echoing the policy of Dignity in Dying, turning assisted dying into accelerated dying and inviting distracting wrangles about the fallibility of prognoses of mortality. The less prominent but better focused group My Death, My Decision rejects this approach in favour of a moral test: is this individual’s desire for an induced and peaceful death a rational response to a clinically established prospect of unremitting and indefinite pain or distress?

There is an acknowledged need to protect patients from choosing to die purely or principally because they feel or are perceived to be – and may very well be – a burden on their family or carer. There is also the not entirely mythical Dickensian relative waiting to inherit. Against these the bill was as nearly as possible armour-plated by its requirement of two independent doctors and a High Court judge to ensure that the choice of an assisted death was free of coercive pressure. Wisely, the sign-off by a High Court judge is now being dropped in favour of an expert panel chaired by a senior lawyer. Judges exist for resolving disputes, not for stirring them up. But how is the panel to decide difficult cases? By a majority, it seems, subject to individual veto.

The principal opposition to Leadbeater’s bill comes, as expected, from Care not Killing, a lobby group strongly supported by the Roman Catholic Church. It’s not easy to get past their unrelenting praise of hospice care, as if this were the only solution needed; but embedded somewhere in the emollient rhetoric are both a Calvinist conviction that death is exclusively God’s business and a Catholic belief in the sanctity of suffering, so that to accelerate it is a form of blasphemy. My abiding puzzlement is with the reason, in an age when theology has largely replaced damnation with compassion, so many clerics are opposed to the scheme. Is it to reassure people that their lives still have value? Or can it be that the destination to which priesthoods offer exclusive access is eternal life?