Insight: Daughters demand right to die in the name of their campaigning mother

When Heather Black was in hospital 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.”
The three sisters today from left to right: Sarah Drummond, Zoe Black and Victoria Burns. Picture: Lisa FergusonThe three sisters today from left to right: Sarah Drummond, Zoe Black and Victoria Burns. Picture: Lisa Ferguson
The three sisters today from left to right: Sarah Drummond, Zoe Black and Victoria Burns. Picture: Lisa Ferguson

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.

Heather, 69, was a born fighter; a tiny powerhouse of a woman who had been campaigning to improve the lives of others since the 1980s. Living in Muirhouse, when the community was being ravaged by heroin, she set up SHADA (Support Help and Advice on Drug Addiction) and worked with some of the most stigmatised individuals in society. She was instrumental in changing policy on needle exchanges to prevent the transmission of HIV, and held the hands of those for whom such measures came too late. At a time when Aids patients were still being shunned, she strove to ensure their deaths were as dignified as possible.

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Her own death, though, was stripped of dignity. Her final days are almost too disturbing to describe. But if we don’t confront the truth about the end of life, how are we to progress? So her daughters – Victoria, Zoe and Sarah – have decided to share the worst of it: the choking noise she made as she struggled to breathe; the awful smell that emanated from her as she vomited brown foam; the way she would rise out of her bed, “as if possessed”, tearing at her nightdress. They are doing so because they want assisted dying for the terminally ill to be legalised in Scotland, joining forces with the organisation Dignity in Dying to push for change. “Mum campaigned for other people all her life,” Sarah says. “She taught us to campaign too. She would very much approve of this. If we succeed, that would be a positive legacy.”

Veteran HIV campaigner Heather BlackVeteran HIV campaigner Heather Black
Veteran HIV campaigner Heather Black

Heather’s daughters are talking to me in the garden of Sarah’s home in Edinburgh. Laughing, crying, jostling, finishing each other’s sentences, they remind me of the March sisters from Little Women: if the March sisters had grown up in Muirhouse rather than Massachusetts, and had punctuated every sentence with the F-word. Their mother was their lode-star, shaping their values, creating a band of activists in her image. They headed off on mercy missions together, all packed into a bottle-green Austin mini-van.

“We went to all the demos too,” Sarah says. “Dundee for the Timex demos, and down to London for the poll tax demos.” Their two-bedroomed house was always full – with waifs and strays who needed somewhere to stay, but also with artists and dissidents. “There was a band from South Africa – eight guys from Soweto – that came for the Edinburgh Festival. They would be in the kitchen teaching mum how to make African food,” says Sarah. “And remember the Ukrainians, who brought their own potatoes,” Victoria adds.

Life with Heather was intense, but never earnest. She was a woman who liked to party. And to travel. She had been all over: Thailand, New York, Cuba. “She wasn’t interested in package holidays,” Sarah says, “or Airbnbs. She would just pitch up and stay with random families – she could always find people willing to put her up for the night.”

Heather had experienced problems with her oesophagus for some time. She found it difficult to swallow and had undergone several operations to widen the narrowing in her gullet. In late February, however, her consultant insisted she should have a biopsy. Victoria was with her on 6 March when she received the phone call telling her she had cancer and that it wasn’t treatable. “We had the phone on speaker and she was shouting: ‘Ask him how long I’ve got.’ He told her several weeks to a year,” she says.

Heather Black in a family photograph with her daughters, from left, Sarah, Victoria and ZoeHeather Black in a family photograph with her daughters, from left, Sarah, Victoria and Zoe
Heather Black in a family photograph with her daughters, from left, Sarah, Victoria and Zoe

Heather being Heather, she wanted to take her daughters, their husbands and her six grandchildren off on a foreign holiday – a last great family hurrah. But coronavirus had already taken hold and that wasn’t going to be possible. Neither was a trip up north or the pre-death wake she wanted to hold for all her friends. In any case, the disease rampaged through her body more quickly than she could have anticipated.

Days after her diagnosis, she had the stent fitted before returning to her own home, a few doors away from Zoe. Her condition deteriorated very quickly and soon she was sleeping for large chunks of the day.

Six days before she died, a nurse suggested she would be better to move into a hospice, but the hospice had introduced a policy of two named visitors – and there was no way she was going to choose between her daughters, so she decided to stay put. Victoria, Zoe and Sarah had already moved into her house to provide round-the-clock care.

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All three are traumatised by what happened next. Heather’s condition continued to worsen overnight, and the following day – Sunday, 10 May – she told the nurse she had had enough. “She was scared, she wanted it over. She asked her: ‘Is there nothing you can do?”

In the UK, of course, helping someone to die remains illegal. The best the nurse could offer was to move to “end of life” care. This meant a change in her drugs regimen. But the new drugs made her agitated.

When she lay down, she made a choking noise. So they gave her medication to clear her tubes. Then came hours of vomiting brown foam, like a volcano. “We cut up downie covers, towels, pillow cases, muslin squares, using them to mop up constantly,” says Zoe.

“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.” They were also worried about getting caught; now they joked darkly about CSI and fibres and Google searches.

Those last few days took an enormous toll: on Heather, obviously, but also on the sisters whose last memories of their mother are of panic, pain and helplessness. They accept their experience was exacerbated by the pandemic which prevented her being moved to a hospice. Still, they believe, in a more enlightened world, Heather would have been allowed to die on the Sunday when she calmly, rationally expressed a desire for her suffering to be over.

“Even from a financial point of view, the nurses, the doctors – all of those NHS resources – the current situation doesn’t make sense,” Sarah says. “I know, for us, it was only four more days. and some people go on like that for months, but you just think: ‘This is it. Game over. Say your goodbyes. Knock it on the head.’ Mum had said she was ready; we were ready. There’s medicine in the world that can make this easy. Who was she being kept alive for?”

The vast majority of Scots now support assisted dying. The last Dignity in Dying poll put the figure at almost 90 per cent, up from 82 per cent in 2015. Within the medical profession, too, opinion appears to be shifting. A recent survey of the Royal College of GPs suggested that in the space of six years support for the College’s policy of opposition had dropped from 77 per cent to 48 per cent, although the figure amongst palliative care doctors is closer to 80 per cent.

And yet Holyrood has been ultra-cautious. The last attempt to put assisted dying on the statute books – the Assisted Suicide (Scotland) Bill – sponsored by independent MSP Margo MacDonald and then, after her death, by co-leader of the Scottish Greens, Patrick Harvie, was comprehensively defeated by 82 votes to 36 in 2015.

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Those MSPs who opposed it expressed a range of concerns: that the law might be abused and that it might divert focus and funding from both palliative care and efforts to improve the lives of those with disabilities. But Dignity in Dying believes it is only a matter of time before the right of those who are terminally ill to put an end to their suffering will become as axiomatic as the right to the vote, abortion or equal marriage.

The shift will come about, the organisation claims, not only because a succession of high-profile cases are highlighting the distress being caused by the lack of legislation, but because more and more of us will have first-hand experience of what it means to endure a protracted 21st century death.

There are two prongs to the organisation’s current campaign. Here in Scotland, it is working with a cross-party steering group of MSPs to try to create a new – more universally acceptable – bill than the last one. Where Harvie’s bill embraced those “with terminal or life-shortening illnesses or progressive conditions which are terminal or life-shortening”, the new bill is likely to apply only to terminally ill patients in the last six months of life, and to have a set of safeguards built in. For example, the person involved would have to be able to demonstrate capacity and two doctors would be required to certify that he/she met the legal criteria.

Based on a law that has been in place in Oregon for 23 years, the bill would represent a compromise – disappointing those who support something more ambitious, but possibly winning over those who have expressed strong reservations.

At the same time Dignity in Dying is publishing a new book, Last Rights, written by Sarah Wootton and Lloyd Riley, and endorsed by Patrick Stewart, Ian McEwan and Betty Boothroyd. It counters the arguments frequently made by critics, and places the movement in the context of other human rights campaigns.

Some of the opposition to assisted dying is rooted in religious convictions about the sanctity of life. Other people, however, simply believe palliative care is now so good those who are terminally ill are guaranteed a “dignified” death; and that, in the latter stages of life, doctors will increase their patients’ pain relief to the point that they are comfortable (and if that pain relief hastens their death then so be it).

Yet Heather Black’s experience suggests otherwise. And she is not alone. Ally Thomson, Dignity in Dying’s director for Scotland, says 11 people a day die in pain north of the border.

“What we have seen, and what stories like Heather’s continue to show us, is that, absolutely, palliative care is essential and we will continue to campaign for more investment in better and more accessible palliative care, but there are people for whom it no longer works,” she says.

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Last Rights highlights some of those stories. For example, there’s Fiona Strong, who died at 31 from a rare form of cancer. Towards the end of her life, doctors offered to sedate her, telling her she could say her goodbyes and slip into unconsciousness.

Fiona did as she was instructed. But successive doses of ketamine failed to knock her out. She kept regaining consciousness – she felt uncomfortable, even hungry – and, much to everyone’s distress, had to say her goodbyes over and over again; yet the nurses were legally prevented from upping the dosage any further.

“I still feel quite traumatised by Fiona’s death because I think [all this] could have been avoided,” her mother, Susan, told the authors. “I can’t see the difference between giving somebody large amounts of drugs to end their suffering over a period of time, or giving them all in one go. It doesn’t make sense because the end result is the same.”

Last Rights also looks at the number of people who kill themselves by other more violent means – such as hanging – because they are denied the opportunity to choose a professionally administered overdose, surrounded by their family, and at the way Dignitas has effectively created a two-tier system, allowing those who can afford the thousands of pounds it costs a death which is beyond the reach of the less well-off.

Most controversially, Last Rights explores VSED – Voluntarily Stopping Eating and Drinking – which it describes as “a form of control that is allowed by law, but straddles the blurred line between what is viewed as ethically right and wrong and clinically acceptable or not”.

The authors interviewed the daughter of Professor Michael Rosen, an expert in pain management, who starved himself to death in the final stages of Parkinson’s Disease in 2018 because doctors were not able to give him drugs to help him die.

Afraid of being sued, the nurses felt obliged to continue offering him food. “They brought him a tray of a three-course meal at one point, like a pantomime,” Amanda told them. “He had to be the one to say he didn’t want any food. They said: ‘We have to offer it to you every time,’ and he found that irritating because of course he was hungry.”

It took days for him to die. “I think it is awful he had to starve himself. He was a bright, articulate man who knew what he wanted and had had a good life. He would have preferred to have said goodbye in an honourable fashion, in control.”

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There are distressing cases in Scotland too. After Richard Selley, from Perthshire, who suffered from Motor Neurone Disease, died at the Dignitas Clinic last year, his wife Elaine described the pain of saying goodbye to extended family members at the airport surrounded by excited holiday-makers.

Meanwhile those who – unlike Heather Black’s daughters – accede to their loved one’s wishes, face the full weight of the justice system. There was never any argument over what happened to Patricia Gordon from Troon. Suffering from Chronic Obstructive Pulmonary Disease (COPD) and lung cancer, she took an overdose to end her life. When that didn’t work, Ian, her husband of 43 years, smothered her with a pillow. His part in her death might never have been discovered if he hadn’t confessed it to police, adding: “No matter what happens now, I loved my wife all the years I was with her.”

But you can’t consent to be killed under Scottish law, so Ian was charged with murder. On the third day of his trial, the Crown decided to accept the reduced plea of culpable homicide on the grounds of diminished responsibility (which he had offered much earlier) and he was sentenced to three years and four months. The following year, the Appeal Court reduced this to an admonishment, but, by then, he had already served jail time.

In Scotland, assisted dying is likely to continue to prove contentious. There are those – including some religious groups, palliative care doctors and disability campaigners – who remain implacably opposed to any attempt to legalise assisted dying. And then there others who will find the prospect of a watered down bill – with narrow parameters – too great a compromise.

“I don’t think it’s wrong for politicians to be cautious in terms of committing to legislation just because there’s a public mood in favour,” says Liberal Democrat MSP Liam McArthur, who is on the steering group. “Personally, I have always believed this is likely to be an iterative process: that what we are likely to see is a series of changes over a number of different pieces of legislation, with each requiring to be considered carefully on its own merits.”

Dignity in Dying believes that – like denying women the vote and gay people the right to marry – our current policy towards assisted dying will come be viewed as barbaric.

“Future generations will look back in astonishment at the horror we subjected dying people to,” Last Rights concludes. “They will read accounts of bereaved relatives and question why successive parliaments failed to act; why respected institutions insisted our broken law was adequate, paying no attention to the ever-growing evidence that suggested otherwise.”

A fortnight after Heather Black’s death, her family gathered at Warriston Crematorium for her funeral. They were lucky; some Covid-19 restrictions had been lifted and so 43 family members were able to attend.

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It was a touching humanist ceremony – full of tears and laughter and swearing – and with a punky DISorder of Ceremony (in place of an Order of Service) just as she would have wanted it. Sarah and two of her grandchildren spoke. Sarah reminisced about the way, as children, her mother dressed them all in the finest clothes from London, courtesy of her “light-fingered” friends. “My mum brought us up to feel fearless, confident and indestructible and to be funny, kind and compassionate. She made us feel we could take on the world,” she added.

Her grand-daughter Daisy told how, after Heather was ill, they had gone round to play Monopoly, “and you made up a new rule – we called it the Muirhouse rule – so you could win”. Daisy’s cousin Jacob recalled: “Although she seemed to know every single person in Edinburgh, I quickly realised she always had time for people she loved.”

The funeral was a means of reclaiming this indomitable figure; of rescuing Heather from the horror of her last few days, and keeping her spirit burning like an eternal flame. “It’s still so recent, our memories of those final hours are with us constantly,” Sarah says. “We are traumatised, which is natural. But those memories will be erased over time. They will fade. At least, I hope they will.”