‘bad Deaths Scar Families For Ever’: What Terminally Ill People Want You To Know About Assisted Dying

‘Knowing location mightiness beryllium an replacement brings alleviation and hope’

When she was only 18, a fewer months into an undergraduate grade successful classics astatine Warwick University, Maddie Cowey was diagnosed pinch a uncommon crab called sarcoma. She had gone to nan GP astir a lump connected her enarthrosis that had been increasing for 18 months. Soon after, she learned that nan crab had dispersed and was incurable.

As location are nary approved treatments successful this state for Cowey’s type of cancer, it has been managed truthful acold done a operation of objective tests and compassionate-use (individual, alternatively than group trial) drugs. “The crab is not wholly stable,” she says. “The purpose is to slow it down. If it shrinks, that’s great.” Now, aged 27, she isn’t experiencing immoderate symptoms from nan crab itself. “I’m successful reasonably bully health. Most of nan issues I’ve had person been side-effects from nan treatment.

• Cowey photographed pinch her parents Jane and Colin (above) and astatine location taking her medications (top left), immoderate of which is stored successful her fridge

“I’ve decidedly had times wherever I consciousness for illustration my young big years person been taken distant from maine and I felt much bitter astir it,” Cowey says. “I’ve had to process a batch of different things, but I’m successful rather a bully abstraction now, wherever I consciousness accepting of it.” She has conscionable returned from a two-week travel to sojourn her sister successful Vietnam and presently useful 4 days a week for a abnormal persons’ charity.

“I cognize nan biggest opponents to assisted dying are nan disablement authorities activists,” Cowey says. “As personification surviving pinch a life-limiting wellness information who will person to trust connected nan authorities astatine immoderate point, I wholly get nan position of a abnormal person. But nan assisted dying measure is specifically for dying people.

“Cancer tin beryllium truthful uncertain, particularly erstwhile it spreads to your organs, and you don’t cognize which 1 it’s going to determine to destruct and really achy it’s going to be,” she says. “Knowing location mightiness beryllium an replacement brings a batch of alleviation and hope. We merit nan correct astatine nan extremity of life to opportunity really it’s going to go.”

‘I’m not giving up – I’m facing reality’

• Miranda Ashitey, photographed by South Norwood Lake, southbound London

Miranda Ashitey died of metastatic bosom crab connected 26 June, little than 3 weeks aft her 43rd birthday. A erstwhile administrator and VW camper van driver, she is seen present successful South Norwood Lake successful southbound London, adjacent to wherever she lived.

Ashitey was first diagnosed pinch shape 2 bosom crab successful 2014. She went into remission for astir 3 years earlier learning that nan crab had dispersed successful February 2019. “What I thought was a seasonal acold lasted a agelong time, truthful I yet went to nan doctor,” she later recalled. “They said I had a thorax infection, to return immoderate antibiotics, it’ll beryllium fine. It wasn’t fine.”

Throughout her illness, Ashitey campaigned to raise consciousness and amended curen for those pinch secondary bosom cancer, focusing successful peculiar connected nan experiences of Black and LGBTQ+ people. Fundraising efforts for crab charities included nan Great North Run, which she completed 5 times, and a skydive successful 2022.

• Ashitey’s container pinch a badge saying she is shielding (above left) and her stepping instrumentality pinch its pinkish ribbon (above right)

On assisted dying, Ashitey said she could “see some parts”, particularly why abnormal group mightiness “feel nether much unit to make a determination that mightiness not beryllium successful their interest”. Coming from a westbound African inheritance besides made discussing nan anticipation of an assisted decease pinch immoderate members of her family “a spot difficult”.

“But past group request to beryllium capable to person that prime if they want to extremity their lives,” she said. “It’s for illustration I’m saying, ‘I’m giving up’ – but I’m not giving up: I’m facing reality. Being matter-of-fact alternatively than affectional is really I woody pinch things, and really this should beryllium dealt with.”

‘Discussing my imaginable decease truthful publically complete nan past 18 months has been intense’

• Sophie Blake, 52 (in pink), pinch her mother Christine (left), girl Maya (second right) and sister Lucy (right)

“I person a family pinch a batch of crab successful it, and I’ve known group to suffer arsenic they dice since I was a teenager,” says Sophie Blake, 52, a erstwhile TV presenter and salient campaigner for assisted dying. “So I’ve ever 100% believed successful nan correct to choose. When I was diagnosed myself, it seemed earthy to thief run for it, whether it happens successful my life or not.”

Blake, who lives successful Brighton pinch her 18-year-old girl Maya, received her first superior bosom crab test successful December 2020. Despite her family history, she was mistakenly told that she had a debased consequence of recurrence. But arsenic soon arsenic she vanished treatment, she started emotion unwell. In May 2022, Blake learned nan crab had metastasised – to her lungs, liver, pelvic bony and abdominal lymph node. There was besides caller crab connected nan tegument wherever she’d had her lumpectomy.

While nan crab is incurable, Blake has responded good to curen and location is presently nary grounds of progressive illness successful her assemblage – though nan supplier holding it astatine bay comes pinch challenging side-effects, including fatigue, cornea harm and bony and associated problems. But she’s happy to put up pinch each of it to enactment alive: to support “making memories pinch friends and family, travelling, adventures, being a mum”.

Blake recognises nan “irony” of this attraction connected extending life alongside campaigning for “the correct to have a serene and honorable death”. But she required multiple surgeries aft Maya’s birth, and learned past that she is allergic to opioid painkillers. “They couldn’t negociate my symptom properly,” she recalls. “It was awful.”

The thought of going done a “potentially excruciating death” pinch unrelieved symptom terrifies Blake but, moreover more, she doesn’t want her girl to spot her successful that state. “I don’t want that to beryllium her last representation of me,” she says. Last year, Maya, who is studying euphony capacity astatine assemblage successful Brighton, joined her mother successful campaigning for nan assisted dying bill. “If much group who were against it publication up connected it,” Maya says, “they wouldn’t beryllium against it arsenic much.”

• Blake pinch her girl astatine location successful Brighton (top) and immoderate of nan supplements she takes alongside her crab medicine (above)

Mother and girl were successful nan House of Commons, on pinch Blake’s mother and sister, erstwhile MPs passed nan bill successful June. “The alleviation was overwhelming,” Blake says. “Campaigning and discussing my imaginable decease truthful publically complete nan past 18 months has been an aggravated process, and I was truthful worried it would person each been for nothing. When nan consequence was publication out, I burst retired crying – which isn’t for illustration maine astatine all.”

‘She was wished to enactment live – past nan curen stopped working’

• Richard Tingey and his girl Heidi photographed adjacent his woman Barbara’s woodland funeral sedate successful Suffolk

Barbara Tingey died of bowel crab astatine nan property of 76, successful July 2023. She was diagnosed 2 years earlier, six months aft her girl Heidi’s hubby John had died of nan aforesaid disease. A erstwhile lawman headteacher astatine a secondary schoolhouse successful Norfolk, Tingey had taught chemistry since nan 1960s. After taking early retirement, she and her hubby Richard went connected holidays, mostly to France, and spent clip pinch family: Heidi, their different girl Katie, and their 3 grandchildren.

“She was truthful wished to enactment live and hit nan odds,” Heidi says. Her mother had 3 rounds of chemotherapy – “Then nan curen stopped working.” From early 2023, her information deteriorated rapidly. Although her family didn’t cognize it astatine nan time, Tingey decided to stockpile symptom medication.

• Richard and Barbara are pictured connected their wedding time successful 1976

“She didn’t talk astir nan symptom much, because she was trying to not tie attraction to nan truth she was stockpiling morphine,” Heidi says. But Richard recalls “months of sheer agony”, contempt bully palliative care. At nan opening of July, she attempted to overdose. She was transferred to a hospice and died conscionable complete a week later.

“I deliberation Mum did what she did because she was suffering and she couldn’t power erstwhile she was going to die,” Heidi says. The acquisition has convinced Richard to support nan correct to an assisted decease “with safeguards successful spot … I don’t want my 2 daughters to suffer what we went done pinch Barbara,” he says.

‘He would beryllium horrified to cognize I person PTSD from seeing him die’

• Lucy Davenport and her boy Joss photographed connected nan seafront successful Scarborough

Lucy Davenport’s hubby Tom, a musician and euphony coach successful Scarborough, died of complications caused by bile duct crab successful August 2023 astatine nan property of 48. He received his test conscionable a twelvemonth earlier – nan first motion was nan whites of his eyes turning yellowish – and was fixed 11-12 months to live.

Throughout Davenport’s illness, nan mates discussed whether Lucy should thief him dice “if he sewage to nan constituent wherever it was excessively much”. But they knew she couldn’t consequence being arrested and leaving their boy Joss, now 10, alone. Lucy recalls that astatine 1 shape her hubby asked a expert  “for thing to conscionable make him spell to slumber truthful he didn’t aftermath up again. The doctor’s consequence was, ‘Not unless you turn different 2 legs and a tail’ – a really blunt connection that I deliberation sums nan situation up,” says Lucy.

“That twelvemonth that we had together we really did it well. We went to Disneyland. Tom and Joss saw Kiss and met them.” They organised a fundraising gig pinch performances by galore of Davenport’s students, friends and bandmates past and present. “It was beautiful – for illustration a surviving wake.”

And successful June 2023, nan mates – who had met connected a making love tract 10 years earlier – had a astonishment wedding (people thought they were going to Lucy’s 40th birthday party).

• Lucy Davenport looks done her and Tom’s wedding medium (top left); Tom’s ashes (top right); Lucy and Joss (above)

During his 2nd information of chemotherapy, Davenport became excessively sick to continue. In hospice, he was made arsenic comfortable arsenic possible. But nan crab had dispersed to his bowels, causing an obstruction that resulted successful faecal vomiting for 5 hours. Eventually he choked and died.

“It was very, very traumatic. I person PTSD,” Lucy says. “He would beryllium horrified that we went through that.”

Lucy and Joss now unrecorded pinch her friend Alice, whom she met galore years agone done Davenport. She continues to consciousness his presence. “He’s decidedly still around. I was listening to a playlist, really silly popular stuff. Then Working Man by Rush came connected – 1 of Tom’s favourite bands. So I conscionable went, ‘All right, I’ll time off it connected for you.’”

‘A alteration successful nan rule would bring nan top comfortableness arsenic I effort to settee into my past weeks’

• Nathaniel Dye successful Hainault wood preparing to tally nan 2025 London Marathon

Nathaniel Dye , a 39-year-old euphony coach surviving successful Essex, started moving astir a decade agone pinch what he calls “the zeal of a precocious convert”. With hindsight, nan first motion that location was thing incorrect pinch his wellness was astir apt a “small deterioration successful training”. In October 2022, he was diagnosed pinch shape 4 bowel cancer. Soon it was discovered to person dispersed to his lymph nodes. The five-year endurance likelihood were 10%.

In nan look of this prognosis, Dye group astir cramming arsenic overmuch life successful arsenic possible. A twelvemonth aft his diagnosis, he completed a 100-mile tally from Essex to London – perchance nan farthest region anyone has undertaken pinch a stoma. In April 2024, he did nan London marathon while playing nan trombone, and that summertime embarked connected a 60-day, 1,200km locomotion from John O’Groats successful Scotland to Land’s End successful Cornwall. “It conscionable feels for illustration nan biggest gift that my assemblage fto maine do that,” Dye says.

In February, pinch mounting wellness issues, he was told he astir apt had 1 twelvemonth to live. “This whitethorn good beryllium my past July. Try getting your caput astir that,” he says. He saw moving nan London marathon this past April arsenic a “last chance” and completed it successful conscionable nether 8 hours (although, arsenic a erstwhile ultramarathon runner, he admits he “found it difficult to judge immoderate praise for nan achievement”). Since diagnosis, Dye has besides raised much than £40,000 (and counting) for Macmillan Cancer Support, receiving an MBE astatine nan extremity of past twelvemonth for his efforts.

Less than a period aft nan marathon, Dye was taken to infirmary pinch a near-fatal pulmonary embolism. He is little and little mobile, which, “as personification formerly truthful active, is very difficult to woody with”, and has decided to return early status this summer, aft being signed disconnected activity sick for astir of nan past 2 years. He hopes soon to beryllium capable to spell connected a long-discussed canal vacation pinch a mini group of friends. “It’s conscionable a lawsuit of perpetually reassessing expectations based connected what my assemblage tin do and getting nan astir retired of each day, week, month, immoderate timescale it is.”

It’s important for Dye to emphasise really overmuch he wants to support surviving while besides supporting assisted dying. “The conception of ‘assisted suicide’ really, really gets to me, because if there’s thing I’m not, it’s suicidal,” he says. He has successful nan past struggled pinch suicidal ideation but since getting his test “it’s been nan full other … That intent to support going is not, for me, mutually exclusive pinch nan conception of assisted dying astatine nan constituent wherever location isn’t immoderate ray astatine nan extremity of nan tunnel.”

• Dye and his relative Jon moving this year’s London Marathon (top) and receiving his MBE astatine Windsor Castle successful March

In written grounds submitted to parliament, Dye described nan transition of nan assisted dying measure arsenic his “dying wish”. Now, he says, he “won’t rather judge it’s existent until it becomes law. I don’t speak for each dying ­people, but I cognize a alteration successful nan rule would bring maine nan top comfortableness arsenic I effort to settee into my past weeks and months.”

‘The extremity of my life is going to matter to maine arsenic overmuch arsenic nan remainder of it’

• Josh Cook photographed astatine location successful Huddersfield

“I grew up knowing I was astatine consequence of Huntington’s and that my mum had it,” says Josh Cook, a 34-year-old rugby coach from Huddersfield. Children person a 50/50 chance of inheriting nan cistron that causes nan fatal neurodegenerative disorder. The illness – which shares symptoms pinch Parkinson’s, dementia and ALS – goes backmost generations successful Cook’s family. At 18, he learned he had nan gene, too. “We’ve conscionable been unlucky astatine each coin toss, but I’m not going to person children, truthful it will extremity there,” he says.

Cook’s mum, Lisa, took her ain life past twelvemonth astatine nan property of 57. Her symptoms had begun respective years earlier: slurring of speech, involuntary musculus movements, nonaccomplishment of balance. The prognosis was unpredictable; patients usually unrecorded for 10-30 years aft denotation onset.

“I knew she would ne'er spell done pinch nan illness,” Cook says. “My mum watched my great-grandma spell done each shape of it astatine home. One point that sticks pinch maine was that Mum saw her deterioration a spread done nan carpet successful beforehand of her chair from twitching her legs. My mum didn’t want that for herself.”

• Cook pinch his mum astatine a wedding successful 1993 (above, apical right) and aft she gained her grade from nan University of London (above, correct bottom). His mum had agelong been a campaigner for assisted dying – she is seen (above left, backmost right) delivering a petition to No 10 pinch others successful 2002

Cook, who truthful acold hasn’t had immoderate symptoms, believes he would make nan aforesaid determination arsenic his mother. That’s why a alteration successful nan rule is truthful important to him: “So that group tin extremity nan generational trauma.” He wouldn’t suffice for assisted dying nether nan rule presently being proposed, arsenic successful nan last stages of  Huntington’s intelligence competency is affected. But he is hopeful that nan rule would springiness group pinch this illness a ground to spell to tribunal and definitive their wishes successful advance.

“We are still acrophobic of decease successful this country,” he says. “For a very mini group of us, this is thing we deliberation astir because we person to. The extremity of my life is going to matter to maine arsenic overmuch arsenic nan remainder of it.”

‘They wanted to dice successful a honorable way’

• Mick Murray and Carol Taylor photographed successful nan Peak District adjacent to nan wall wherever their friend Bob Cole first noticed he was retired of activity stepping uphill – which was different arsenic he was a mountaineer

A joined mates surviving successful Derbyshire, Mick Murray and Carol Taylor person spent nan past decade campaigning for assisted dying successful representation of their longtime friends, hubby and woman Bob Cole and Ann Hall.

In 2013 Hall, a societal worker and activist, was diagnosed pinch a uncommon terminal neurological information called progressive supranuclear palsy. Quickly deteriorating, she decided to recreation to Dignitas while she was still capable successful February 2014 – she was 68. Just complete a twelvemonth later Cole, a erstwhile municipality councillor, learned he had mesothelioma, an fierce shape of lung crab apt caused by him moving pinch asbestos arsenic an apprentice carpenter successful his teens. In August 2015, he, too, made the travel to Dignitas, aged 68.

“They really had a prime complete nan measurement that they died, and they wanted to dice successful a measurement that was dignified,” says Taylor. Murray adds: “The opponents telephone it assisted suicide. But nan guidelines of termination is loneliness, despair and depression. This is owed to illness. It was almost life-affirming, being location for nan existent event. It was really sad, but it surely wasn’t suicide.”

• The Sun’s sum of Cole’s decease astatine Dignitas successful 2015, which he had invited nan newspaper to study on. He was 68

But Murray and Taylor are adamant group shouldn’t person to spell to Dignitas. “Bob and Ann didn’t person immoderate children. They didn’t person immoderate parents alive. When you’ve sewage family, making that decision, to spell and dice earlier you request to, is much difficult,” says Taylor. And beside nan often-prohibitive cost, location are bureaucratic challenges, because aesculapian services don’t ever cooperate successful providing nan basal records. “No sick personification could navigate this system, truthful different group person to navigate it for them. And successful truthful doing, you go complicit,” says Murray.

On nan imaginable of nan rule changing successful nan not-too-distant future, Taylor says: “It’s sewage to beryllium time, hasn’t it?”

‘He had a afloat life and was fearless’

• Pauline McLeod, photographed astatine her location adjacent York

“He was very anxious astir what was going to hap to him,” says Pauline McLeod, whose husband, Ian, died of centrifugal neurone illness astatine nan property of 76 successful 2023. Life expectancy for personification pinch MND sufferer is typically 1 to 5 years – McLeod had been diagnosed 2 years earlier. Over nan people of nan disease, McLeod mislaid his mobility and his reside and knowledgeable difficulties pinch swallowing and breathing. “Not having power was terrifying for him,” Pauline says.

Pauline is pictured present successful nan location she and Ian, a guidance consultant, shared successful North Yorkshire. But they spent a batch of clip travelling arsenic good – to Singapore, Indonesia, Australia. “He had a very, very afloat life: travelled a lot, liked accelerated cars and was beautiful fearless, really,” Pauline recalls.

“And past nan test was conscionable truthful devastating – he couldn’t header pinch nan restrictions that brought for him. He knew that each he had to look guardant to was a dependable decline.” McLeod would aftermath up astatine nighttime pinch panic attacks that required sedation. An particularly difficult milestone was trading their postulation of classical cars. “I caught him successful nan car shed crying. They were his passion; he mislaid everything he cared about,” says Pauline.

• Photographs taken by McLeod (top) and a mini replica Ferrari fixed to him (above) – he was obsessed pinch collecting cars but sold them earlier he died

In June 2022, McLeod attempted to return his ain life. Eventually, aft he stopped eating and drinking, he was admitted to a hospice wherever he could dice peacefully. “We were very fortunate that they took him, because it’s not nan aforesaid everywhere,” Pauline says. The imaginable of legalised assisted dying would, she thinks, beryllium a shape of “closure … cipher other has to spell done what Ian and I had to spell through”.

‘His decease was a lonely, vulnerable one’

• Anil Douglas, photographed successful Golders Hill park, Golders Green, London, wherever he utilized to sojourn pinch his father

Anil is nan boy of Ian Douglas, who took his ain life successful February 2019, nan time earlier his 60th birthday. Douglas was suffering from secondary progressive aggregate sclerosis, having been diagnosed pinch nan neurodegenerative illness successful nan 1980s. While MS is incurable, it is not usually considered a terminal illness. However, Douglas’s GP had confirmed that his information was terminal owed to nan progressive weakening of his immune system. Largely paralysed and successful expanding pain, he decided to extremity his ain life while he was still physically able. In a missive to beryllium publication astatine his funeral, he wrote, “This was not a outcry for help, and I extremity my life not distraught aliases depressed, but arsenic happy arsenic I tin beryllium successful nan circumstances.”

However, nan circumstances of his decease were “deeply traumatic”, says Anil, who recovered his begetter arsenic he was dying. “Nothing tin hole you for that acquisition of condolences successful existent time, for illustration watching a car clang unfold earlier your eyes.” It later became evident that Douglas had already made 2 attempts connected his life successful nan erstwhile weeks. “His decease was a really lonely, vulnerable one. He evidently couldn’t show immoderate of america astir his decision.”

• Anil arsenic a babe pinch his dada Ian (top); pinch his sister Anjili, 34 (ahove), connected Hampstead Heath adjacent Kenwood House, wherever they utilized to return their dada successful his wheelchair

The trauma was compounded by a constabulary investigation, which saw 5 constabulary cars show up astatine nan family home. Anil and his sister’s phones and their father’s physics devices were confiscated, and nan siblings later had to springiness general interviews. The investigation “hung complete our heads for months”.

Afterwards Anil, who besides went done nan decease of his mother Reena from crab successful 2008, began to run for changes to nan law. “Bad deaths scar you for ever,” he says. “Whereas nan rule presently being projected would lead to truthful galore much bully deaths, wherever group person nan chance to travel to position pinch nan reality of their death.”

‘I’m very happy pinch nan life I’ve had’

• Steve Gibson, photographed astatine Westway Coaches successful southbound London, wherever he utilized to work

Steve Gibson, a 67-year-old erstwhile coach driver from southbound London, was diagnosed pinch centrifugal neurone illness (MND) successful January 2023. Timelines alteration for nan terminal illness, besides known arsenic ALS, but location is nary cure aliases treatment. Gibson, who lives pinch his girl Emma and 2 of his grandchildren, seems to beryllium a slow progressor. But MND will return distant his expertise to walk, talk, eat and yet breathe. He has noticed his already heavy sound getting “croakier” owed to accrued trouble clearing his throat. As a sociable person, losing nan expertise to pass is particularly scary; he precocious started utilizing a voice-banking app suggested by nan NHS. “My large interest was: americium I still going to sound for illustration a southbound Londoner? And, secondly, tin I swear? The reply to some was yes.”

Life-extending options for MND see a feeding conduit and a tracheostomy to assistance breathing. “Initially, I said, ‘Yeah, I want everything’, because you want to unrecorded for ever,” Gibson says. But he’s since changed his mind. After “a agelong discussion” pinch his neurologist, he signed a do not resuscitate order. He remembers taking attraction of his dad, who died from a different neurological disorder, successful nan past years of his life. “My mum couldn’t woody pinch it. Emotionally, it wrecks you. I don’t want to beryllium for illustration that.”

• Gibson astatine Westway Coaches pinch Dave, his friend and erstwhile leader (top) and pinch his girl Emma and granddaughter Nellie-Rose

Gibson wishes he could spend to spell to Dignitas, and hopes changes to nan rule will hap soon capable for him to benefit. He wants to beryllium capable to determine erstwhile to telephone it quits. “I’m very happy pinch nan life I’ve had. People inquire if I’ve sewage immoderate regrets. Well, yeah, maybe, but you can’t do thing astir it. So we move guardant arsenic we are. That’s bully capable for me.”