‘It’s just awful. She is surviving when she shouldn’t. I have been in touch with dignify in dying. She hasn’t spoken or had water in 6 days hasn’t eaten in 16. We wouldn’t allow animals to go through this. 😢😢’
That’s the text my wife Susan got from her friend Nikki, a fortnight after she’d visited Nikki’s mother Josephine to talk to her about her funeral. Celebrants rarely get the chance to meet someone before they die, so it was a real privilege for Susan, not least because she had known Josephine for more than twenty years. Next door neighbours in Ravelston, Josephine had been a great help when Susan’s daughters were young, and they remained in touch after they both moved away.
Josephine was an elegant lady with a good eye. She and her husband Jack found a top flat in a then unfashionable Art Deco block and turned it into a very desirable penthouse apartment with a rooftop garden: her house was always full of flowers, and family photographs in silver frames.
Susan met Josephine shortly after the doctors had told her she had only days to live but despite that she was on great form. Two of her friends had also come to say goodbye and she greeted them with a broad smile saying, ‘sorry ladies: I’m not really dressed for our lunch at Harvey Nicks!’
Josephine had been diagnosed with cancer in 2015, and from her handbag she produced the letter she’d written at the time specifying her funeral wishes.
She wanted to be cremated, she wanted her grandsons to be there, wearing the kilts and the sporrans she’d bought them and she wanted them to carry her coffin down the aisle. She’d already briefed her favourite florist, she’d chosen the music and she’d asked for a humanist ceremony.
Talking to Susan, Josephine smiled when she recalled her life with Jack, which revolved around his passion for the golf they played on some of the world’s greatest courses. She asked Susan to thank him during the ceremony for always looking after her and for providing her with such beautiful homes.
Her face lit up when she talked about Nikki and her grandsons, of whom she was very proud. She wanted to thank her Turkish daughter in law Ayşe for giving her two more wonderful grandchildren whom she adored and she wanted Ayşe to know just how much she admired her for coping with a different country and culture when she married her army officer son, Simon.
Susan told me how lovely it had been to meet Josephine and how uplifting to hear her stories. She fully expected to be speaking to the family a few days later after Josephine had passed away, but that was not to be. Josephine didn’t die as the doctors had predicted: instead, she clung onto life for almost three weeks.
We can perhaps imagine what it is to prepare for our own death. What we cannot begin to imagine is what it is like to watch someone we love dying, slowly and painfully, in front of our eyes. The day on which Susan and Josephine met was the last that Josephine was fully conscious. For the next eighteen days she lay on a hospital gurney next to the marital bed that she and Jack had shared: constantly in tears, Jack refused to leave her side, so he, Nikki and the nurses kept vigil with her all that time.
When we are dying, we don’t feel hunger. The body directs all its energy to keep the heart and kidneys functioning, and everything else is secondary. There are physical changes: our breathing becomes more difficult, and we lose control of our bowels and bladder. We may lose weight and become frail, or put on weight and become puffy. It may be difficult to swallow, and we may feel sick, and all of these changes can be upsetting, both to experience and witness.
As our body grows ever weaker, we spend more and more time asleep, a sleep that is usually enhanced by morphine or one of its derivatives, delivered by a ‘syringe driver’, an electronic machine attached to our body under the skin. Typically, there are three feeds: something to take away pain, something to take away anxiety, and something else to minimise the secretions that build up in the throat when we’re lying on our backs. One of its aims is to ensure we don’t feel as though we’re drowning.
The good news for most of us – if we’re the person dying – is that we will be so heavily sedated that we won’t be aware of what’s happening, but for the people who love us, it’s very difficult to hear the rattle of our breathing as it becomes ever more laboured. The nursing staff will explain that we’re not in pain, but it’s still profoundly upsetting to witness and most people remember the vigil by the deathbed as a time of anguish, frustration and sleeplessness. Nikki had recurring nightmares in which she was pursued down endless corridors by shrieking skeletons, all of whom were wearing her mother’s face.
Josephine’s death and Nikki’s experience of it are far from uncommon: even with the best possible palliative care, some of us will die in great pain.
In September 2019, the campaign group Dignity in Dying published a report that prompted MP Nick Bowles to write, “The experiences shared in this report are as harrowing as anything I have encountered… I have had two bouts of cancer and am no stranger to the nastiness of the disease and its treatments, but nothing prepared me for the horror of what is described here.
In 2019 British people are being forced to endure unbelievable suffering at the end of life. Some will retch at the stench of their own body rotting. Some will vomit their own faeces. Some will suffocate, slowly, inexorably, over several days, their last moments of life disfigured by terror. Any one of us might suffer such a fate”.
When their mother died, my friend Sarah Drummond and her sisters shared the story with journalist Dani Garavelli in Scotland on Sunday.
When Heather Black was having a stent fitted, shortly after being diagnosed with oesophageal cancer, she turned to her daughter, Sarah, and said: “I wish Harold Shipman worked on this ward.” She was joking; sort of. But weeks later, she wasn’t. Weeks later, she would beg Sarah and her sisters to kill her. Again and again, she would plead with them. And, just for a second, they would consider it. Imagine: the three of them – sad and scared – asking themselves if they had what it took to place a pillow over their mother’s face.
I spoke to Sarah separately, and she told me that this wasn’t her family’s first experience of death, but her mum was feisty. She’d always told them that she would die on her own terms and they believed her. “She was a strong enough parent, she probably had the means and the drugs, you know, just to, to end it on her terms, but that’s not what happened.” She chose not to go into a hospice but to die at home, where Sarah, Zoe and Victoria could be with her all the time but the last six days of her life were a nightmare that her daughters will never forget. For hour upon hour, Heather was projectile vomiting a vile, stinking, brown foam. The girls ran out of wipes so they were cutting up towels, pillow cases and duvet covers to mop up constantly. The smell was “beyond disgusting”.
“We had never seen her cry, but she cried a lot then,” Victoria says. “When Sarah brought her daughters to see her, she sensed it would be the last time and freaked when they went. She said: ‘Tora, just kill me now,’ and I said, ‘Mum, I wouldn’t know what to do’.” “She asked us so many times,” Zoe adds. “I got to the point where I thought: ‘Could I put a pillow over her?’ But I wasn’t sure how difficult it would be, or how long it would take.”
According to Dignity in Dying, seventeen people die like this every day in Britain, and despite the best efforts of hospice staff, palliative care nurses and doctors, they will continue to do so because the law as it stands does not allow people to end their suffering. Dignity in Dying admit that palliative care works for the vast majority of people approaching the end of their lives, but as they point out, that is no consolation to the people for whom it does not.
At time of writing, assisted dying for terminally ill, mentally competent people is legal in California, Oregon and Washington State in the USA, the state of Victoria in Australia and in five countries, Belgium, Canada, Luxembourg, the Netherlands and Switzerland. It’s not legal in the UK, although a recent survey suggests that – with the appropriate safeguards – more than 80% of the public believe it should be.
Doctors are understandably reluctant to reveal their opinions on the rights and wrongs of assisted dying. Until June 2019, the British Medical Association firmly opposed it, but in 2021, they changed their position to neutral to help inform future policy debate but until the law is changed anyone who helps someone to die will continue to face prosecution, whatever their motive.
It was not always so. Until comparatively recently, doctors enjoyed a remarkable degree of latitude and autonomy with regard to end of life.
It was only when the private diaries of King George V’s physician, Lord Dawson of Penn were published in 2008, that anyone knew that Dawson had pumped a massive cocktail of cocaine and diamorphine into the 70-year-old king as he lay on his deathbed: while his primary intention would undoubtedly have been to lessen pain and distress, his secondary one was more questionable: so that the king’s death could make the first edition of the following day’s Times newspaper.
Bertrand Dawson wasn’t the last doctor to ‘play God’. Many doctors routinely increased the dose of pain-killers when a patient was nearing their end, with the sole intention of avoiding causing further pain and suffering, but all that ended in 1999, with the arrest and prosecution of Doctor Harold Shipman.
Regarded throughout his career by both patients and colleagues as an experienced and compassionate GP, Shipman’s trial at the end of last century revealed him to be Britain’s most prolific mass-murderer. Over the course of 30 years, he had killed at least 250 of his patients so he could benefit from their wills, many of which he had forged.
Shipman revealed nothing about his motives either during his trial in 2000, or at any point before he took his own life in prison four years later, but his case caused a profound change in medical practice in the UK. No doctor can now risk their reputation and career by acting out of compassion.
Only those who have retired are free to speak on the subject but even they are taking a big risk. In 2013 a retired GP from Renfrewshire publicly admitted that he had helped several pensioners to end their own lives because they were chronically ill.
Dr Iain Kerr, a keen marathon runner who volunteered several afternoons a week for a food bank, revealed that he had been suspended by the General Medical Council for six months in 2008 for prescribing tablets to an elderly patient so she could end her life.
When called to account for his actions, Dr. Kerr told the hearing, “In my opinion, sometimes the law of the land is out of step with what might be called natural justice or social justice or with what a significant minority of people think. There have been times when owning slaves was legal and women did not have the right to vote and these things we now think of as untenable.”
In 2013 he told another story about a patient who was nearing the end of his life and had asked him for additional pain relief. Dr. Kerr agreed, although he warned the man he might not wake up if he got it. That prompted the patient to remember that his son was due to visit him that evening, so he asked Dr. Kerr to wait until he’d had a chance to say goodbye. Dr Kerr agreed, and later that evening, administered the fatal dose. As he said himself, “Post-Shipman, this sort of behaviour is not really appropriate nowadays”. He was subsequently questioned by the police but never charged, and he too died of cancer just three years later, in 2016.
The Scottish Parliament had two opportunities to make assisted suicide legal in the first decade of this century when the late Margo Macdonald MSP brought two bills to the house. They enjoyed widespread popular support and as one of the organisers of the My Life, My Death, My Choice campaign I found myself speaking on a very diverse platform alongside the Deputy Leader of the Scottish Conservative Party, Jackson Carlaw, Scott McKenna, a Church of Scotland Minister and the advocate Niall McCluskey. Of the churches, only the Scottish Episcopal Church joined Friends at the End and the Humanist Society of Scotland in supporting the legislation. Most religious organisations objected because it conflicted with their faith, sharing the view that it was morally wrong for someone to take their own life or to help another person to do so.
The issue of assisted suicide is unlikely to go away any time soon.
A few years ago I conducted the funeral of ‘Bobby the Painter’ who’d ended his life at the Dignitas Clinic in Zurich at the age of 78. It was an unusual funeral in many ways, not least because it was held in that most unlikely of venues for a humanist ceremony: a church. It turned out that Bobby, who was a tireless grafter to the end, had recently repainted it free of charge so the minister kindly invited the family to use it.
Bobby had a tough start in life. The youngest of nine children, he was a bright lad who should have been a doctor, but that wasn’t an option so he started working as soon as he could, washing out bottles at the chemist, delivering prescriptions, doing a paper round, working at the grocer’s and, when he had the time, playing dominoes with his granddad, ‘Strapper’ a coalman who had his own horse and cart.
When he left school, Bobby cycled 12 miles a day to and from the offices of the Daily Mail. It was a good job, but he was on the backshift and he got so fed up seeing his pals going to the pub and the dancing, and meeting girls, he kicked it in and became an apprentice painter and decorator, the career he was to follow for the rest of his life. Called up for National Service he was released when the doctors discovered a hole in his lungthe size of a half crown, so he spent the next six months drinking nettle tea and carrot juice in Liberton Hospital until the hole shrank to the size of a sixpence. He married the girl next door, Alison, and they honeymooned with her grandparents in a ship-building town in Fife where their nuptial meal was fish and chips.
By the early sixties, Bobby was working for the Water Board and the family were living in a tied house, way out in the middle of nowhere at a place called Talla in the Scottish Borders. Bobby had a van for work, but if Alison needed anything, she had to walk more than a mile to get a bus. Life was simple, but there were the kids to look after and baking to do; there were logs to chop and kindling to cut, so it was always busy, and they loved it out there. A dam was being built nearby, so Bobby made extra money driving the workmen to and from Edinburgh at the weekend and as he was still painting and decorating whenever he could, the kids only saw him on Friday nights. As they told me, work was Bobby’s hobby all his life.
In 1968 he swapped jobs and a house to move to Roslin. There were chickens and chicken huts to be moved along with everything else, so on a day of pouring rain, they put all their belongings onto a trailer which Bobby towed behind a tractor: when they arrived they were soaked to the skin and looked like a parcel of gypsies. Heaven knows what the neighbours thought because until the family tipped up, the street had been quite posh.
The house was tiny but over the years, Bobby steadily doubled its size, from two bedrooms, a kitchen, a living room and a bathroom to four bedrooms, two bathrooms, a conservatory, a sun lounge, two double garages, an office and a kitchen many times the size of the old one. The drive became a vegetable patch, where Bobby grew everything they needed: carrots, peas, potatoes and Brussels sprouts but he never bought fertiliser. Instead he sent the kids out with buckets to collect sheep purls, which would be left to steep in water for a week.
Bobby was a great storyteller when his four children were young. He never read them a bedtime story – he made up his own, and he taught them all the old songs, like Big Rock Candy Mountain. He did silly walks, he wore daft hats and he laughed so loud at his own jokes that the kids laughed along with him too. He sang the same song to his ten grandchildren that he’d always sung to them, “You’ve got to have high hopes, high apple pie in the sky hopes”.
Bobby always said he would to retire, but he never did, and he got involved in all kinds of ventures, usually involving raising animals, from ferrets to cattle. At Christmas time, he’d hold turkey plucking parties at the back of the house. He invested in land and property and as a landlord, there was always something to fix, so what with leaks and washing machines and general repairs he never stopped, until he was diagnosed with the cancer that, unrecognised and undetected, had spread throughout his body.
He didn’t want to go to hospital but eventually he allowed himself to go into private care for a couple of months but he kept on getting infections so he was in a lot of pain. What made it worse was that one of he’d just seen one of his closest friends die from cancer, and he was determined that whatever happened, he wouldn’t allow himself or his family to go through the same ordeal.
Dignitas may be a non-profit organisation but its services don’t come cheap. Fortunately for Bobby, he could afford to go: all that grafting really had paid off. It took a while to persuade the rest of the family, but in time they came round to his point of view. As getting to the clinic under his own steam was going to be awkward, his trip to Switzerland had to be top secret so it was only when I told the mourners at the funeral that most people learned how Bobby’s life had ended.
When he left home for the last time, the family told me that Bobby had walked unaided into the taxi. He was relaxed and calm, he looked dapper and, they were at pains to assure me, he was still having a right laugh until the end.
When he died in 2017 Dignity in Dying calculated that one British person a fortnight was making that journey. Today in 2023, it’s one a week. What Bobby hoped, as I still do, was that one day no one will have to leave their friends, their family or their country to die alone, in a foreign land.