17 Brits every day will suffer as they die despite the best care, new research reveals

Posted On: 
3rd September 2019

New report from Dignity in Dying reveals unbearable suffering experienced by thousands of terminally ill Brits every year,

  • 4 in 10 members of the public and 4 in 10 healthcare professionals have either witnessed or cared for someone suffering at the end of life
  • Just 1 in 10 healthcare professionals think there are currently sufficient options to give dying people control over their death  Less than 1 in 10 members of the public think the ban on assisted dying is working well
  •  New report from Dignity in Dying reveals unbearable suffering experienced by thousands of terminally ill Brits every year, debunks argument that improved palliative care removes need for assisted dying and makes case for change in the law to allow assisted dying alongside improving access to high quality end-of-life care

New research out this week reveals that 17 Brits every day will experience no relief of their pain as they die, despite access to hospice care. Polling also out today finds that a significant proportion of the public and of healthcare professionals have experienced someone suffering at the end of life; that a minority of healthcare professionals believe there are currently sufficient options to give dying people control over their death; and that a minority of the public believe the blanket ban on assisted dying is working well. These figures are released as Dignity in Dying launches a new report, The Inescapable Truth: How 17 people a day will suffer as they die, which uncovers the unbearable suffering experienced by a significant minority of Brits in their final months, weeks and days and makes the case for a change in the law on assisted dying.

The report includes new research from the Office of Health Economics, which concludes that even if every dying person who needed it had access to the level of care provided in hospices, 6,394 people a year, equivalent to 17 people a day, would still have no relief of their pain in their final three months of life.

New polling commissioned for the report finds that four in ten (43%) healthcare professionals have cared for someone who has suffered at the end of their life despite receiving high quality palliative care, and four in ten (39%) members of the public have witnessed a dying family member or friend suffer unbearably towards the end of their life. Only one in ten (13%) healthcare professionals think that in the absence of an assisted dying law there are sufficient options to give dying people control over their deaths, and six in ten (62%) believe there are circumstances in the UK in which doctors or nurses have intentionally hastened death as a compassionate response to a patient’s request to end their suffering. Less than one in ten (7%) members of the public think the ban on assisted dying is working well.

Through the personal testimonies of dying people, bereaved relatives and healthcare professionals, Dignity in Dying’s report explores some of the horrific symptoms that can go unrelieved for many people despite access to high quality palliative care, such as severe pain, extreme nausea and fungating wounds. It also considers the ethical complexity and limits of some of the end-of-life options currently available in the UK, including Voluntary Stopping Eating and Drinking (VSED), withdrawal of treatment and palliative sedation.

Among the personal testimonies in the report is Susan Strong’s, whose daughter Fiona died in May 2018, aged 31. Fiona was diagnosed with a rare form of cancer in her paranasal sinuses in 2015. In her final days, in severe pain and under the care of a hospice, Fiona opted for palliative sedation. Susan said:

“Fiona had lost all mobility, the tumour had begun growing through her nose and throat and we were having to scrape blood clots out of her mouth. She was having trouble breathing. Eventually she said ‘Mum, I just want them to put me to sleep. I can’t do this anymore’. She was offered palliative sedation and they told us within four hours she would be asleep, that she wouldn’t wake up and would eventually slip away. But four days later she was still waking up in horrible pain and we would have to say goodbye all over again. This happened seven times. The nurses were in tears; they were lovely and helpful but they couldn’t take Fiona’s pain away. They were shocked at the levels of drugs she was getting. Why couldn’t Fiona have decided when she’d had enough and be helped to go swiftly, peacefully and painlessly? I feel she was let down. It was horrific.”

Dr Arun Bhaskar, consultant in pain medicine and President of the British Pain Society, was also interviewed for the report. He said:

“Palliative care does a fantastic job in the majority of cases, but we must accept its limits. There is a minority of patients whose pain and suffering, often through a combination of physical and psychological factors, cannot be controlled. If they are clearly dying, suffering unbearably and are mentally competent, why can’t we give them autonomy over their death? In healthcare we often talk about autonomy as a basic human right, but I feel that by denying those people the choice of assisted dying we are disrespecting them as individuals and disregarding their human rights. To force someone to suffer against their wishes and endure a drawn-out death is torture for the patient. This is not acceptable in a civilised society. I believe assisted dying can and should be introduced in the UK in a safe, tightly regulated manner.”

Sarah Wootton, Chief Executive of Dignity in Dying, said:

“The experiences outlined in this report are truly harrowing: a woman with terminal ovarian cancer who developed gangrene so painful it left her yelping like a dog; an eminent anaesthetist who starved himself to death in order to avoid a worse end from Parkinson’s Disease; a palliative care nurse whose patient was ‘literally decomposing from the inside out’. Improved funding for and access to palliative care, though certainly needed and welcome, would not help cases like these. This is the inescapable truth that can no longer be glossed over or explained away: that even with universal access to excellent palliative care, a significant minority of Brits would still experience unbearable and unrelieved suffering as they die.

“This new research makes clear that more and better palliative care would not negate the need for assisted dying, and that assisted dying is no more ethically complex than the end-of-life options currently available. Rather, assisted dying presents a safe, humane option which, alongside improvements to existing practices, would increase the quality of life and death for a great many terminally ill, mentally competent Brits. Dying people need both excellent palliative care and the option of an assisted death.

“In the face of our new research, overwhelming public support for a change in the law on assisted dying and an ever increasing number of jurisdictions around the world embracing such a change, it is imperative that MPs act. We urge the Government to take forward the former Justice Secretary David Gauke’s commitment to launch an inquiry into the blanket ban on assisted dying, the suffering it inflicts on dying people and their loved ones and the impact it has on public services.”