Whew! The bill proposing the right for people who will be dead in six months anyway, to do it now if they want to, passed its second reading in the Lords last week. I've been helping the pressure group Dignity in Dying lobby for a change in the law, so am pretty pleased. If you are interested, you might like to read this piece I did for the Daily Mail.
Lying in bed and gasping for breath, my brother’s face, grey and gaunt, was a picture of suffering. Watching him fight for every breath, the pain was so excruciating, I willed my wonderful big brother to die.
I couldn’t bear to hear the death rattle that shook his emaciated body. I couldn’t bear to see the anguish on the faces of his wife and children. Coward that I am, I had to leave the room.
David died days later. I never saw him again and that harrowing scene will haunt me forever. I was, of course, distraught that David’s life was ending. But much of my sorrow and — yes — fury was caused more from the manner of his dying.
He died in agony — prolonged over many weeks. And in this day and age that is completely and utterly unacceptable.
He was 74 and was suffering from advanced bone cancer. It’s a hideous disease. Your bones become so fragile that your ribs can break if you cough. Finally your organs fail or — as in David’s case — you develop pneumonia.
But although he was dying and in excruciating pain, the doctors — quite understandably frightened of being sued for hastening patients’ deaths — wouldn’t give him enough morphine to stop the agony and nothing I or the rest of his family said would make them relent.
I am not an advocate for euthanasia. But, watching David die, and seeing the true horror of what it means to be denied proper pain relief, I am now convinced the terminally ill should have enough drugs to be out of pain if they don’t want to die quite yet — and to die with a doctor’s help if they want to end a life not worth living.
David was two years older than me and the sweetest, kindest, gentlest brother anyone could ask for.
Along with our brother Jamie (six years younger than me), we were brought up in Johannesburg in South Africa where our father worked for ICI and our mother Margaret Inglis was the country’s most successful and famous actress.
It was an idyllic childhood where we were all allowed to roam totally free. I worshipped David and followed him everywhere. We were a double act, getting up to pranks which must have left our parents tearing their hair out.
One summer’s day when I was about nine and he was 11, we decided it would be terrific fun to hide behind the wall at the end of our garden and shower passers-by with water from the jet hose the gardener used to spray the fruit trees. Imagine our joy when a wedding procession in open-topped cars appeared.
There they were in all their finery. Whooping like banshees, we sprayed the lot of them. They couldn’t work out where this sudden rain storm had come from — apart from the last guy who had time to see it all.
He stopped his car and vaulted over the wall. ‘Quick, Prue. Run,’ David yelled. My last vision of him was being turned upside down and having his head stuck in the bucket of water.
He never complained that I got off scot-free. But he was also stoical and loyal. When he was 12, he was out looking for birds’ eggs with a friend when they got caught by a swarm of bees. David was stung more than 300 times and his friend was so badly affected he collapsed.
Ignoring his own pain, David ran to the hospital three miles away to get help. He was a quiet, non-assertive boy but, that time, he elbowed his way to the front of the queue.
The doctors wanted to admit him instantly but David refused.
No, you’ll never find my friend unless I come back with you.’ He took them to the marshy reed bed, deep in the bush, and found the boy, by then unconscious.
He showed the same uncomplaining bravery when he became ill.
In the summer of 2011, David was visiting England from South Africa with his second wife Lorna.
Although he lived in England for much of his adult life, working first for the RAF and then as managing director of my company Good Food, he had returned to South Africa in 1985 when his first marriage ended.
It pained him hugely to leave behind his two teenage children: James, now 45, who works for an international aid organisation, and Helen, 47, who runs antique and food markets.
David was immensely proud of them and came to England regularly to see them and also to see Lorna’s daughters Lindsey and Ingrid.
But on this visit, as soon as I saw him, I realised something was wrong. He had lost a lot of weight and was obviously in pain.
He was wearing a back brace, but he waved away my concerns — explaining he’d wrenched his back trying to lift a fridge.
As ever, he would not fuss. But Lorna persuaded him to see a doctor and he was diagnosed with bone cancer. It was terminal. He was determinedly positive, not a trace of complaint or self-pity.
‘There’s not a lot they can do but there’s a chance I could have two more years,’ he told me.
He was soon too ill to travel, so he and Lorna decided to stay in England where he would be close to his children, who both live in Norwich.
We were all distraught. But none of us guessed the horrors that lay in store. As the cancer progressed, David was in and out of Ipswich Hospital. We all knew the staff couldn’t save him but we naively expected them to alleviate his pain. After all, with so many modern pain-killing drugs, no one should have to suffer. How wrong we were.
David was given morphine and the blessed relief would last about three hours. But then, the nurses would be unable to give him his next dose for another hour. My poor, poor brother. Out of every four hours, one of them was spent in agony, groaning, crying and calling out.
It was hell for those nurses who were not yet immune to suffering, hell for the other patients on the ward, and distressing beyond measure for the family, and, of course, torture for David himself.
Prescribed at a sufficient dosage, morphine can hasten the end of life and it is also one of the most potent pain relievers in the medical armoury. Tragically, the law is so unclear on its use and, of course, partly as a result of the Harold Shipman case where elderly patients were murdered by their GP, doctors are now terrified they will be blamed for causing death — and don’t use enough to eliminate pain.
Patients are not being told the truth. One doctor told me they had to restrict the morphine because it was addictive. To put it crudely, if you are on your death bed, does it matter if you become a junkie?
When we pleaded for help, one nurse told David’s children: ‘If you knew how many times we are asked that . . .
‘All over the country, in and out of hospitals, people are suffering like your dad. It is so unnecessary and no one admits that it’s happening.’
In our parents’ day, doctors would give their dying patients enough drugs to relieve the pain.
Of course, this also made their patients drowsy and they slept a lot. And if it also helped them on their way, no one thought it wrong.
Legally, doctors can still do that as long as it’s clear they are not intending to kill. But there has been such a backlash by pro-life organisations against any hint of euthanasia — which this is clearly not — that doctors will not take the risk of being accused of murder.
In the last weeks of David’s life, he would get pneumonia and be in and out of hospital. They would give him antibiotics. He would recover. They would send him home, and a week or two later, he’d be admitted again.
This went on and on and it was utterly horrible. A fortnight before his death, David’s wife discharged him, thinking it would be easier for him to be at home. They were renting a two-bedroomed house and their children came to spend those last days with him. Macmillan nurses came in twice a day. The house was stuffed with family, and David was so near to everybody that they could hear his laboured breathing and desperate groaning, one hour in every four, night and day. It was agony.
When the morphine was doing its job, David would be pain free. He would be joking and, most unusually for him — he was a typically controlled Englishman — he would tell Lorna how happy she’d made him, how good it was to be surrounded by his and her children, how grateful he was for my and our brother’s visits and help. He said the things we all needed to hear: that he loved us.
It was immensely moving and gratifying. He was normally the sort of man who — if I went to hug him — would stand stiffly, arms at his side, until I stopped. But in those last weeks I felt the closest to him I’d ever been. Jamie was with him too and we spent happy moments, telling each other old family anecdotes, reliving our childhood.
That is how dying should be. And proper palliative care allows the space and the time to say all those things before it’s too late.
One doctor told me they had to restrict the morphine because it was addictive. To put it crudely, if you are on your death bed, does it matter if you become a junkie?
But mostly it was not like that. The memories of his four children and his beloved wife should be of those good times, but what they cannot forget is that one-hour-in-four of agony.
Two of my nieces, quite separately and unknown to each other, pleaded with the Macmillan nurses to allow him more drugs. But they couldn’t — their hands were tied. It was so unbearable that one of his daughters — I won’t name her — told me she’d sat for 30 minutes with a pillow in her hand, trying to screw up the courage to act. But she simply couldn’t bring herself to suffocate her own father.
In the end, David realised the only way out was to kill himself. When he developed the next bout of pneumonia, he refused antibiotics.
Dying of pneumonia is so hideous; you would not wish it on your worst enemy. Yet that is what my brave brother was reduced to to escape his suffering. His family had to endure the sound of his laboured breathing, and then for the last five days of his life a constant loud death rattle. They had to bear the sight of their husband and father veering from semi coma to excruciating pain.
He died on May 14, 2012. For all of us, I suspect, relief is what we felt, not sadness or grief. They came later, and only with a determined effort to push from our minds the fact that David died a horrible, painful and undignified death, quite unnecessarily.
We like to imagine people slipping gently away, their families by their sides. It could and should be like that. Instead, people are dying in agony every single day in hospitals all around the country.
On Friday July 18, Lord Falconer’s Assisted Dying Bill gets its Second Reading in the House of Lords.
To be clear, the Assisted Dying Bill does not allow doctors to kill patients, but it will enable a terminally ill, mentally competent adult, who is diagnosed to die within six months, to request and receive life-ending medication. And the patient will then decide if and when to take it.
The Bill draws on the experience of Oregon’s Death with Dignity Act. This U.S. law has been in force for 16 years and has enabled a small number of people who were terminally ill to request the option of an assisted death from their doctor.
In practice few people take this option — fewer than 80 in 2013 out of the annual 30,000 deaths in Oregon. This figure has never risen above 0.2 per cent of all deaths in Oregon. There has been no evidence of abuse since its inception.
It will mean doctors who want to help patients will be able to do so without fear of suspension, investigation and possible criminal charges. It will also mean that dying patients will be able to end their lives in a dignified, pain-free way that their families will remember as positive and loving.
When I think of David, I try to remember the good times.
But the memories of those horrible last days creep in and I am consumed with anger. David should have died in peace. He could have. And he didn’t.