'I don't want my children to witness my last months of agony'

As it’s revealed Dame Diana Rigg made a plea in her final weeks for assisted dying to be legalised, campaigners on both sides and seriously ill patients argue their case… ‘I don’t want my children to have to witness my last months of screaming agony’

Jenny Carruthers knows starkly the agonising death that may await her. Ten years ago, the mother of three’s partner died at home in terrible pain from terminal bone cancer. Now, Jenny has been told she, too, faces the same.

Her partner, Gypie Mayo, had enjoyed fame playing guitar with rock bands such as Dr Feelgood and The Yardbirds.

He was diagnosed first with liver cancer in 2010 when he was 60. He had surgery and chemotherapy, but in December 2012 he learnt that the cancer had spread to his bones and that it was terminal.

‘Gypie had a very difficult last two months dying at home,’ says Jenny, 55, a healthcare assistant from Bath.

‘He was in so much pain that I could hear him screaming from the other side of the house when he turned over in bed. It was heart-wrenching. Dreadful.

Jenny Carruthers (pictured) knows starkly the agonising death that may await her. Ten years ago, the mother of three’s partner died at home in terrible pain from terminal bone cancer. Now, Jenny has been told she, too, faces the same

‘At home he was put on an intravenous drip of powerful painkillers but he said that it ‘didn’t even touch the sides’ of the pain.

‘We had quiet conversations about whether he could die with an overdose but he couldn’t put me in a position of breaking the law, so he never asked me actually to do it.’

Gypie died at home in October 2013, aged 62.

‘If medically assisted dying under the care of qualified doctors and nurses had been legal, he would have chosen to have gone sooner,’ says Jenny.

‘Instead, he suffered two months of absolute agony.’

By cruel coincidence, now Jenny has been told that she, too, has terminal bone cancer.

In June 2018, she found a breast lump while in the shower.

‘I knew what it was instantly,’ she says. Surgeons removed the lump and she had radiotherapy.

Fear of the cancer returning led Jenny to pay for a private mastectomy in September 2020 because NHS doctors did not deem it necessary.

‘When they tested the tissue after the op, the surgeons found tumour cells,’ says Jenny, adding that it seems these were a second, new cancer rather than a spread of the first.

In January 2021 Jenny was told that the cancer had spread to her left hip bone, pelvis, spine, ribs and sternum. She has been off work ever since.

Alex Pandolfo (pictured) says he feels haunted by having had to watch his father die at the age of 68 with severe cognitive impairment in 2005, ‘having spent the last five years of his life unable to speak, and tortured with hallucinations and rages’

She is receiving monthly treatment with palbociclib, a drug that blocks growth-promoting proteins in cancer cells, and every four weeks she has injections of denosumab, which helps to strengthen bones by limiting activity of cells that break down old bone material.

‘I’m told that everything is stable at the moment. But only about 5 per cent of people with my condition live five years after diagnosis. So who knows what will happen? I live from three-monthly scan to three-monthly scan in anxious hope,’ says Jenny.

‘I know that, ultimately, I’m heading to the same end as my partner. Nursing Gypie at home gave me full comprehension of exactly what will happen.’

She would rather a medically assisted death at home.

As Jenny says: ‘My dream would be to have a big party with all my friends to celebrate my life, have a quiet moment with my children and then take a little pack of prescribed assisted-dying medications under medical supervision and fade away.’

Last week it was revealed that the actress Diana Rigg, who died from cancer in 2020, had made an impassioned plea just before her death calling for assisted dying to be legalised. She had been diagnosed with lung cancer earlier that year, and in a recording that’s just been released by her daughter, the actress Rachael Stirling, she described one of the ‘least attractive aspects of my condition’, becoming incontinent.

READ MORE: Legendary actress Diana Rigg made impassioned plea to legalise assisted dying shortly before her ‘truly awful’ 2020 death from cancer

It was, she said, the most ‘dehumanising thing that can happen’, adding that nobody talks about ‘how awful, how truly awful the details of this condition are, and the ignominy that is attached to it. Well, it’s high time they did.

‘And it’s high time there was some movement in the law to give choice to people in my position. This means giving human beings true agency over their own bodies at the end of life. This means giving human beings political autonomy over their own death.’

Currently, UK law will not allow such a thing.

Under the 1961 Suicide Act it is a criminal offence to help someone take their own life, punishable by up to 14 years in prison.

To avoid this, according to figures from the UK charity Dignity In Dying, more than 630 Britons with terminal illnesses have travelled to Switzerland to pay around £15,000 for an assisted death, where the process is legal and open to foreigners.

However, Jenny cannot bear the thought of how this would impact on her grown-up children.

‘Waving goodbye to them at the airport and boarding a plane to Switzerland… how could I do that?’ she asks.

‘But neither do I want my kids to have to witness my last two months of screaming agony.’

Her fears are not unfounded. A 2018 report by the Royal College of Anaesthetists said: ‘Evidence suggests that 45-56 per cent of patients with advanced incurable cancer [around 72,000 to 89,600 each year in the UK] experience moderate to severe intensity pain before they die, often for many months.’

Jenny and others like her are now hopeful that UK law may soon change – thanks to a Bill being put through the Isle of Man parliament, the House of Keys, that could make it the first part of the British Isles to legalise assisted dying for terminally ill residents (they will need to have been ‘ordinarily resident’ on the island for at least a year).

Last month, the Bill passed its second reading – if it passes through the final stage, it could mean assisted dying being legalised on the Isle of Man in 2025.

Other assisted-dying Bills are already making progress in Scotland and Jersey.

Last week it was revealed that the actress Diana Rigg (pictured), who died from cancer in 2020, had made an impassioned plea just before her death calling for assisted dying to be legalised

In Holyrood, parliamentarians are drafting their Bill’s wording, which will be followed by committee scrutiny and a Stage One vote (the first of three stages before a Bill can become law). No date is currently set for potential legalisation.

In Jersey, meanwhile, proposals are being refined for debate in its parliament, the States Assembly, in June 2024. If this is approved, drafting a new law may begin in September.

Across the world, assisted dying has been legalised for more than 250 million people in countries such as Australia and New Zealand, and 11 jurisdictions in the U.S.

Assisted dying generally involves a person with a terminal illness or incurable condition being helped to take their own life by means of lethal drugs provided by a doctor.

In Western Australia, for example, where the practice was legalised in 2019, it applies to people who have a medical condition that is advanced, progressive and will cause death most probably within six months (or 12 months if it is a neurodegenerative disease such as dementia), and is causing intolerable suffering that cannot be relieved.

For this to be allowed, they must be assessed by two specially trained doctors and deemed suitable. They are then allowed to end their life with approved (though not publicly specified) lethal drugs, either administering the drugs themselves or having a doctor administer them. Here in the UK, groups are calling for assisted death to be legalised in one form or other.

The campaign group Dignity In Dying wants it legalised for people who are terminally ill, and who are legally competent to decide to end their own lives.

Another UK group, My Death, My Decision, is calling for a broader law that would legalise assisted death both for the terminally ill, and also for people who are suffering intolerably with incurable conditions, such as those who are paralysed or in great pain.

However, many in the UK oppose assisted-dying legislation.

Dianna Rigg had been diagnosed with lung cancer earlier that year, and in a recording that’s just been released by her daughter, the actress Rachael Stirling, she described one of the ‘least attractive aspects of my condition’, becoming incontinent

Dr Gordon Macdonald is chief executive of Care Not Killing, an alliance of organisations fighting against changing the law — it campaigns instead for better palliative end-of-life care.

He calls the Isle of Man legislation ‘disappointing’ and told Good Health: ‘By allowing the deliberate ending of human life with death-row drugs, many vulnerable people will feel pressured into ending their lives.

‘This is exactly what we see in Canada, which introduced euthanasia in 2016, where thousands who are killed annually cite fear of being a burden or loneliness as a reason [for choosing medically assisted death].’

He argues that we should be investing in much better palliative care so that people with terminal illnesses can die without the fear of agonising pain.

‘While killing is cheap, providing high-quality palliative care and supporting people at the end is not’, he says.

‘But this is what we would urge members of the House of Keys to focus on, and pull back from this dangerous policy.’

In 2015 The Economist Intelligence Unit ranked the UK at the top of 80 countries in a ‘quality of death’ index, based on palliative-care provision and national strategies. Yet despite this ranking, an estimated ‘one in four people is not able to access palliative care services’, according to the National Institute for Health and Care Research.

In Parliament, some tentative moves are under way to consider legalising medically-assisted dying.

The last time legislation was proposed, by Baroness Meacher in 2021, her Assisted Dying Bill passed its second reading unopposed in the House of Lords, but then ministers did not allocate it committee time for consideration before Parliament broke in April last year. In layman’s terms, the legislative window had expired.

‘Assisted dying’s time has come for the British Isles,’ argues Sarah Wootton, chief executive of Dignity In Dying. ‘A debate must be brought forward in Westminster as a matter of urgency to end the suffering inflicted on families with every day that Parliament drags its heels.’

The Health and Social Care Select Committee is conducting the first House of Commons inquiry into assisted dying.

The committee, which launched in December 2022, is expected to issue a report later this year.

Separately in the Commons, pro-assisted dying MPs are lobbying for a change in the law via their All-Party Parliamentary Group (APPG) on Choice at the End of Life.

Its co-chair, Kit Malthouse, Conservative MP for North West Hampshire, told Good Health: ‘We think legalisation is coming – it’s a matter of when, not if.

‘This is a story of progress across the world. It does not seem sensible that the UK should be the last to hold-out.’

Kit Malthouse says the APPG is lobbying for a law that would say: ‘Where an individual is considered by two doctors as having six months left to live, and if a judge sees that the person has a settled desire to end their life and the mental capacity to make that decision, they would be given permission to have an assisted death.’

‘Such a law would enhance countless people’s lives,’ Kit Malthouse argues.

As for the practical medical implementation, he adds: ‘In theory it would be an NHS-provided service, or at least one that is free at the point of need, with medical and nursing practitioners able to opt out for reasons of conscientious objection, as they are with abortions.’

The British Medical Association, the Royal College of Physicians, the Royal College of GPs and the Royal College of Nursing all maintain a ‘neutral’ stance on legalisation. However, the British Medical Association told Good Health that it wants to see an ‘opt-in’ system, where doctors volunteer to perform assisted deaths.

If significant numbers of doctors refuse to perform this work, people wishing for assisted deaths in the UK could effectively face a postcode lottery on whether their choices are enacted.

Meanwhile, the current guidelines for the Crown Prosecution Service (CPS), covering England and Wales, suggest it has diluted its stance on the criminality of assisting a suicide, by stating that a prosecution for assisting a suicide is less likely if the CPS deems, on the evidence available, that the deceased individual had reached a voluntary, settled and informed decision to end their life and if the person who assisted the death was motivated wholly by compassion.

Even if a law is eventually passed that met the requirements of Kit Malthouse’s APPG, it would not be enough for potentially millions of people – including Alex Pandolfo, 69, a retired education consultant from Lancaster.

In 2014, Alex found that he was losing track of time and having difficulty writing things down.

‘This was unusual because I was physically highly fit and had always been fluent and on top of things,’ he says.

‘My GP sent me to a memory clinic and I was diagnosed with early-onset Alzheimer’s.’

Doctors told him that he could expect to die within anything from three to 11 years. ‘I’ve had to stop doing things such as driving and my ability with numbers is bad, too,’ he says.

On top of knowing his condition is incurable, Alex says he feels haunted by having had to watch his father die at the age of 68 with severe cognitive impairment in 2005, ‘having spent the last five years of his life unable to speak, and tortured with hallucinations and rages’.

His father had developed multiple systems atrophy, a progressive neurodegenerative disorder characterised by a combination of symptoms that affect both the central nervous system (which controls movement) and the autonomic nervous system, which controls involuntary functions such as blood pressure.

Having seen what his father endured, and knowing that there’s no cure for his condition, Alex – who is single and has no children – put together sufficient money to buy membership with a Swiss assisted-dying organisation.

He says: ‘At the time of your choosing, they will put an intravenous drip into your arm, and you switch on a machine that will inject a lethal dose of a barbiturate drug into you.’

For many, ending their life with a self-administered drug in a foreign medical facility may sound a horrifying prospect. But Alex says: ‘Psychologically, I was a real mess until I signed the forms: I’d been suicidal. I couldn’t face what Dad had suffered.

‘Now, I feel confident I can live well – until the day I feel that cognitively I’m getting increasingly confused and am in danger of losing the capacity to make legal decisions.

‘At that point I will take the plane to Switzerland. But for the moment I have life quality. Right now I’m off to Carlisle for a couple of days to a rock concert.

‘I would definitely prefer to die at home, around the people I know, rather than go off to Switzerland.

‘Yet even if the Isle of Man and APPG legislative approach becomes law across the UK, it won’t help me – because it requires two doctors to certify that you are terminally ill with six months or less to live.

‘But no one can predict with any certainty when a person with Alzheimer’s will die.

‘I could be stranded for years in the grip of severe dementia, and still none of the medics could measure my life expectancy with any confidence.

‘I think, instead, that the decision to undergo assisted death should be legally open to anyone over the age of consent who has an illness or condition that has a serious impact on their quality of life and for which there is no cure or effective ameliorating treatment.

‘If they have the mental capacity to make that legal decision to have their life ended, then they should have the right to an assisted death.’

Such an approach is supported by the campaign group My Death, My Decision.

Its chair, Trevor Moore, told Good Health: ‘Drawing a line for assisted death at terminally ill people who have a fixed period of six months to live is too arbitrary and it excludes people who suffer intolerable conditions that are not terminal, as well as those who

face death through dementia.’ With the latter condition, important safeguards would be in place, he adds, so that people diagnosed with dementia who request the right – in the future – to have an assisted death would have to be assessed for mental competency at the point when they request this right, as well as when they request actually to go through with it.

But as he acknowledges: ‘You could leave it too late at that point if your dementia has progressed too far and you can’t be deemed compos mentis.’

Nevertheless, such legislation would still go much too far for other assisted-death campaigners because it opens the door for anyone with non-terminal conditions – such as mental illness or a physical disability – to be permitted to end their lives with medical assistance.

Clearly, there is no way forward that will satisfy everyone. But Kit Malthouse is optimistic.

‘Our primary goal now is to get all the major parties to have a manifesto commitment that the next Government would give parliamentary time for a Bill in the next Parliament,’ he says.

‘We hope to see a vote in the next two to three years, and we hope to see assisted dying legalised.’

Source: Read Full Article