Tributes flow for Elise Burns, the campaigner who challenged Peers to “look me in the eye” and justify denying her a dignified death
Dignity in Dying is devastated by the death of Elise Burns, a courageous, formidable and much-loved campaigner for assisted dying, who died in hospice with her mum and sister by her side on Wednesday 22 July.
Elise lived with secondary breast cancer that had spread to her lungs, liver and bones. Having worked in publishing, most recently at Hachette UK, she campaigned with extraordinary honesty, humour and determination, refusing to allow those in power to look away from the reality facing terminally ill people under the current law.
In April, as Peers prepared for the final day of debate on the Terminally Ill Adults Bill, Elise issued them a direct challenge:
“I would love Peers to look me in the eye and tell me why me and my friends, and anyone with terminal illness, don’t deserve to die with dignity and to have the choice to die as they choose, without pain.”
Her words were later repeated in the House of Lords, where she watched from the Gallery with her Mum, as the Bill she had fought so hard for ran out of time at the hands of a small minority of unelected Peers.
Sarah Wootton, Chief Executive of Dignity in Dying, said:
“Elise was a force of nature: fearless, funny, furious about injustice and utterly determined to make life better for those who would come after her. She knew that assisted dying law change would almost certainly arrive too late for her, but she gave everything she had to ensure that other dying people might one day have the choice she was denied.
“Elise challenged Peers to look her in the eye and explain why she did not deserve dignity and choice at the end of her life. They never provided her with an answer. Instead, a small minority deliberately obstructed the Bill until it ran out of time.
“Elise’s death is another painful reminder that delay has consequences. While Parliament waits, terminally ill people are dying without the protection, reassurance and choice that a safe assisted dying law would provide.
“We will carry Elise’s courage and her challenge with us until this law is changed.”
Lord Cashman, a dear friend of Elise’s, said:
“I am devastated at the loss of my dear friend Elise. She was brave, outrageous, compassionate and gloriously alive. Even while confronting her own death, she fought relentlessly for her friends and fellow campaigners, and for strangers she would never meet, because she could not bear the thought of others being denied dignity and choice.
“Elise deserved to see the Bill complete its passage through Parliament. Had a small group of Peers not deliberately filibustered and obstructed it, she would have lived to see it pass.
“That knowledge compounds my grief. Those who treated parliamentary time as a game should reflect on the human consequences of their actions. Elise did not have time to waste. Neither do the countless other dying people still waiting for change.
“I will miss her laughter, her irreverence and her indomitable spirit. We will not stop until others have the choice she was so cruelly denied.”
Lauren Edwards MP, sponsor of the reintroduced Terminally Ill Adults (End of Life) Bill, said:
“Elise was one of the last people I spoke to before deciding to take up the Terminally Ill Adults Bill. In the week before our conversation, she had undergone two operations, attended eight medical appointments and endured another round of chemotherapy. Yet she gave me more than half an hour of her time because she was determined that Parliament should understand what was truly at stake.
“Elise spoke with extraordinary warmth, humour and moral clarity. She did not ask Parliament to end her life. She asked Parliament to trust terminally ill adults with a safe, compassionate choice over how their lives might end.
“We promised to stay in touch as the new Bill began its journey. I am deeply saddened that Elise will not be here to see it through, but I will never forget our conversation or the responsibility she placed in my hands.
“This Bill is for Elise and for every terminally ill person who has campaigned despite knowing that change may come too late for them. Parliament must now honour their courage by completing this work.”
Elise also featured in Dignity in Dying’s recent campaign with world-renowned photographer and director Rankin, joining seven other terminally ill people to urge Parliament to “Back the Bill Again”. The campaign was filmed during Elise’s final months, when she was already living with constant and, at times, excruciating pain.
In her interview, Elise spoke with unflinching clarity about what the choice of an assisted death would have meant to her:
“I’m not scared of death. I am terrified of a painful, drawn-out death.”
Elise is the second of the eight terminally ill people involved in the Rankin campaign to have died in the space of the three months since the campaign was launched. Keith Williams died in June after campaigning for choice until the final weeks of his life.
Neither Elise nor Keith lived long enough to see the reform they fought for become law, let alone to have the comfort and reassurance of knowing that an assisted death would be available to them should they need it. Yet both continued campaigning to the very end, determined that others should not be forced to endure the same absence of choice.
We offer our deepest condolences to Elise’s mum, sister, brother, family, friends and everyone who loved her. We remain determined to honour her life and legacy by securing the safe, compassionate assisted dying law for which she fought so powerfully.
ENDS
For more information, please contact Tom Steen, Media and Campaigns Officer, at tom.steen@dignityindying.org.uk