The Inescapable Truth
British people are being forced to suffer against their wishes as they die. Crucially, this suffering occurs even when high-quality specialist palliative care is present, meaning improving the provision of care will not address this problem. Specialists in palliative care and pain management have confirmed that they see cases where a person’s suffering cannot be relieved despite their best efforts.
17 people a day will suffer s they die
Pain
Pain can be severe at the end of life, as terminal illnesses can disrupt the body’s usual functions. Macmillan Cancer Support suggests around half of people who have cancer will experience some pain, though others have estimated the figure to be much higher.
Studies have shown that having pain controlled is the primary factor associated with having a good death. The BMA’s research into public and professional perceptions of end-of-life care found that being in pain at the end of life was a fear of both the public and doctors. Doctors viewed pain as something that could be managed but acknowledged that it could not be eliminated entirely.
“I remember a patient from a couple of years ago who had a very, very severe pain from cancer that was affecting the nerves in his back. He was in exceptionally difficult pain, He was young, he was married and they and a child. We tried lots of different medications and it was just getting us nowhere. We had gone through all the normal sedation routes, and it was just not working.”
- Palliative Care Consultant
Current Practice
A 2014 Freedom of Information request to Directors of Public Health found that approximately 7% of deaths recorded as suicides in England involve people who are terminally ill. This equates to over 300 dying people ending their lives every year. The World Health Organisation estimates that for each adult who dies from suicide there may be up to 20 others attempting suicide.
Research suggests the desire to hasten death is complex and informed by several different factors. A range of studies have found that dying people who report having a wish to hasten death do not see death as an aim, but as a side-effect of pursuing the only available option of escaping suffering. While the literature is clear that many people at the end of life do experience a wish to hasten death, there is no recognised response to these wishes that can be considered universally effective.
“I think in the 21st century, why are we subjecting someone to such a degrading way of dying?”
- Palliative Care Consultant
How do people in the UK legally hasten their death?
Stopping eating and drinking
Some people at the end of life choose to hasten their death by voluntarily stopping eating and drinking (VSED). A death by VSED means the person has actively made the decision to refuse food and water, as opposed to somebody who has lost the ability to consume food and water due to their illness.
Withdrawing Treatment
Adults who have mental capacity have the right to make decisions about their own treatment and care. People can decide to consent to or refuse treatment, even if doing so may shorten their life.
Palliative Sedation
Palliative sedation, also known as terminal sedation, therapeutic sedation, or continuous deep sedation, is a legal end-of-life practice. Sedatives are used to relieve symptoms of suffering. Sometimes this results in the person becoming temporarily unconscious.
The True Cost
In the UK, it is currently illegal to assist someone to die. As a results, many people travel to Switzerland to arrange an assisted death. One British person travels to Dignitas to die every 8 days. This is their story.
A Difficult Journey
The cost of an assistant death is Switzerland is, for many, prohibitively expensive. On average, it costs anywhere between £6,500 to over £15,000 to have an assisted death in Zurich.
Despite the cost of an assisted death being a significant issue in debates about the current law, for most interviewees in our research it did not impact on their decision to seek an assisted death overseas. Many said how they felt privileged to afford to make the arrangements, acknowledging that it was not an opportunity that every dying personal has available to them.
A Logistical Challenge
The logistical hurdles that need to be overcome to arrange an assisted death means only some people are capable of doing it. Interviewees recognised that obtaining paperwork and navigating bureaucratic systems requires knowledge and skills that favour the “sharp-elbowed” middle-class.
It was clear that arranging an assisted death had a negative impact on the mental and physical health of those involved. It is telling that this was considered the preferable choice. Having the control and peace of mind of an assisted death was considered by all interviewees to be worth the pains of making it happen.
A Cruel Trade-Off
To arrange an assisted death overseas dying people must negotiate a complex trade-off.
Being able to make the journey to Switzerland requires a certain level of health.
However, this can create pressure to make the journey before becoming too ill to do so, which in turn often means sacrificing quality time that people could enjoy if they were able to remain in the UK.
The Journey Home
Following an assisted death, Swiss authorities must confirm that there has been no breach of Swiss law. This means that police, a public attorney and an independent doctor inspect the body of the person who has died, review the evidence provided by the organisation and, if necessary, interview the professionals and the loved ones who witnessed the death.
Our research found evidence that, while there is comfort in knowing someone has ended their suffering, grief is made more complicated by the death happening in a foreign country.
As a result, all interviewees whose loved one had an assisted death said that a cremation took place in Switzerland, with their loved one’s ashes collected at a later date or couriered back to the UK.
The reality of having little choice but to have a cremation in Switzerland means that people are denied a traditional funeral service in the UK. This limits the funeral choices available and prevents people donating their bodies to medical science.
Threat of Prosecution
With the prohibition of assisted dying in the UK and the difficulties in arranging an assisted death abroad, our research has found that dying people often need the help of friends and family to make the arrangements for an assisted death, yet any assistance provided is against the law.
“I knew it was illegal. But there was part of me that was sort of, excuse my language, but f*ck you. I had a choice, but she was my mum – I didn’t have a choice.”
The majority of interviewees were clear that they were willing to break the law.
Becoming Criminals
In our interviews, a small number of people were investigated by the police when they returned to the UK. This resulted in anger at the implication of being involved in a crime.
Given most interviewees in our research were not investigated by the police when they returned from Switzerland, we can assume the law has not been implemented as intended.
Desperate Measures
Our research found that terminally ill people are taking matters into their own hands by attempting to end their lives in unenviable circumstances.
“She decided that she wasn’t going to let cancer do its worst. She would construct a way to escape.”
Three Failings of The Law
Language
In 2016, the term assisted dying was added to the Oxford English Dictionary.
It is widely accepted that the term suicide carries social stigma and the idea that a person ‘commits’ suicide is an outdated reference to when – prior to the 1961 Suicide Act – suicide was a crime.
“She never used the word suicide, just always said, ‘Don’t worry about me, I’ll sort myself out”
Other Means
Research has uncovered cases of dying people in the UK who have ended their own lives from a range of highly distressing and violent means.
Attempts
In our interviews we did not encounter any examples where somebody who attempted to end their life and survived did not try again. This contributes to an understanding of the differences between dying people ending their own lives and non-dying people who die by suicide.
Crime Scenes
Throughout the UK the police are expected to attend all incidents of sudden or unexpected deaths that occur outside of a medical setting. It is clear from our interviews that some police officers were uncomfortable investigating possible cases of assistance in line with the NPCC guidance, though many interviewees were sympathetic to the plight of the police in these circumstances.
Grief
There is much to differentiate the deaths of the people featured in this report from cases of suicide, yet one aspect where similarities remain is the immediate impact on those who are bereaved.
Final Thoughts
Over 200 million people in the world have access to some form of assisted dying. One interviewee told us why their loved ones would have had better, less traumatic death if this was an option in the UK;
“The different with assisted dying would have been night and day. There would have been much more control, there’s nothing wrong with wanting a little control of one’s life. It would have enabled her to have lived the last part of her life with optimism, with positivity.
She would have enjoyed the sunrises and the sunsets a lot more knowing she was going to have a good death.”
A lack of meaningful choice is driving dying people towards deaths that are often violent, dangerous and lonely.
While the Office for National Statistics is now investigating this problem, an historic failure in data collection has the problems that dying people face.
Based on all the evidence available to us, we now estimate that between 300 and 650 dying people end their own lives in the UK every year, with a further 3,000 to 6,500 making an attempt on their own life.
