Submission from Dignity in Dying (SPR0092)
Introduction
Dignity in Dying is a not-for-profit organisation that campaigns for the right to a dignified death. This means having choice over where we die, who is present and our treatment options; access to expert information on our options, good quality end-of-life care, and support for loved ones and carers; and control over how we die, our symptoms and pain relief, and planning our own death.
Dignity in Dying believes that terminally ill, mentally competent adults should have the right to have the choice of an assisted death, subject to upfront safeguards. Giving terminally ill people the option of assisted dying would reduce the number of people who take their own lives and so help to combat the number of suicides in England.
Assisted dying and suicide
There is frequently a deliberate attempt to conflate the issue of assisted dying with suicide and to present legalising assisted dying for terminally ill people as being anathema to suicide prevention work. There is no evidence that assisted dying undermines or runs counter to effective suicide prevention.
At Dignity in Dying we support the aims of preventing suicides of those who have he opportunity to live. However, we do recognise that there are circumstances where terminally ill people, who will die imminently, should have choice and control of the timing and manner of their deaths. There is a clear distinction between those who can live but want to die, and those who want to live but who will die imminently of disease and simply seek to control the timing and manner of that death.
Assisted dying is therefore different to suicide. Terminally ill people who wish to control the manner and timing of their own death are not suicidal. It is therefore inappropriate and, to many, insensitive to characterise their wish for an assisted death as suicidal.
The consequences of the current law
What is clear is that the current law is not stopping terminally ill people ending their lives. As shown by Dignitas’s published figures over 300 Britons have travelled to Dignitas in Switzerland to end their lives since it opened. Dignity in Dying’s research suggests that for every Briton who ends their life in Switzerland with medical assistance, ten more terminally ill people die from taking their own lives at home.
Freedom of Information Act requests from Dignity in Dying to the Directors of Public Health in every local authority in England asked them to examine annual audits of suicide trends in their local authority. We established that out of a total of 760 suicides recorded by six responding local authorities between the years 2005 and 2013, approximately 7% of cases involved a person who was dying from a terminal illness.
Making informed decisions
The current law does not prevent terminally ill people from ending their own lives, or attempting to, here and abroad. What the current law fails to do is to allow those terminally ill people the ability to make that decision fully informed.
As a result the current law risks people ending their lives in desperation rather than preventing them from doing so only after discussion. The current law bans any activity that is perceived to potentially encourage or assist them ending their lives. As a result many clinicians are unable to have a full and honest conversation with a patient about their expressed wish to end their lives. Such conversations would prove vital to exploring with patients why they wish to end their lives, ensuring they understand their prognosis and the likelihood of them being able to have a pain-free and dignified death naturally. In the absence of these full and honest conversations, some dying people may pursue an assisted death not fully informed about the alternatives available to them.
Any serious effort to prevent people ending their lives unnecessarily should consider the impacts of putting dying people in this position. An assisted dying law would ensure that terminally ill people who wish to end their lives can be fully informed about the probability of a comfortable and ‘natural’ dignified death.
Impact on dying people
There are significant financial, legal and medical risks posed to dying people who wish to have an assisted death due to the current law.
There are significant financial and logistical barriers to a dying person having an assisted death at Dignitas. It can cost an estimated £10,000 to travel to Dignitas to die and many people are not physically capable to making the journey. The current law, by forcing many people to take this option, is forcing people to pay large sums of money to die with dignity, while excluding those who lack the resources.
Whilst hundreds of Britons have ending their own lives at Dignitas since its establishment, this option is not available to every dying person. We know that because of the difficulty of travelling abroad to die, many dying people take matters into their own hands in this country. This is at great physical risk to themselves and legal risk to their loved ones.
These are just some of the cases Dignity in Dying is aware of, for example: Michelle Broad who took an overdose of medication rather than die as a result of her motor neurone disease; Kevin Davis, attempting to avoid the late stages of terminal renal cancer, tried to hang himself; Duncan McArthur died after taking life-ending medication he had ordered online; Avril Henry did the same, hiding enough of the drugs when her home was raided by the police.
The story of Simon Binner, as told in the BBC 2 documentary Simon’s Choice in February 2016, demonstrates the lengths that some dying people will go to in order to control their end of life. Simon, who suffered from a rare form of motor neurone disease, attempted to take his own life at home. His willingness to take such drastic measures convinced those around him that he was determined to die on his own terms and he had an assisted death in Switzerland just a short time afterwards.
The lack of an assisted dying law does not prevent terminally ill people going to extreme and often violent lengths to end their lives.
Impact on loved ones
Suicides have an impact on friends and family of those who take their own lives. It must also be recognised that the suicides of dying people who end their own lives in gruesome ways will have a far greater impact on those they leave behind. There will also be an impact on friends, family and society at large from dying people being forced to pay thousands of pounds and travel thousands of miles simply to have a comfortable and dignified death.
Assisted dying model: distinguishing between the terminally ill and the suicidal
There is a clear and understandable concern that legalising assisted dying would risk allowing individuals who could otherwise be supported to live to end their lives. We are clear that such a concern needs to be understood and addressed.
That is why the system of assisted dying Dignity in Dying advocates has been developed to effectively distinguish between those who are suicidal – do not have a terminal illness but wish to die – and those who are merely seeking some control over the timing and manner of their imminent deaths.
In order for a person to have an assisted death, he or she would have to be terminally ill, mentally competent and aged 18 or over. This would be assessed by two doctors, who would also ensure that the dying person had a clear and settled intent to die; that they had the capacity to make such a decision; and that this decision had been reached voluntarily without coercion.
The person would be referred to a psychiatrist if either assessing doctor had any doubts about whether or not the dying person met these criteria. In doing so, it would allow healthcare professionals to ensure that a person who was suicidal due to mental ill-health could be given the care, support and treatment they needed.
Brittany Maynard, who advocated for assisted dying in the USA before using Oregon’s Death with Dignity Act, said:
“I've had the [life-ending] medication for weeks. I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms. Cancer is ending my life. I'm choosing to end it a little sooner and in a lot less pain and suffering."
Evidence from the USA: Suicide prevention and assisted dying
Assisted dying has been legalised in several states in the USA, beginning with Oregon and now available in Washington, Montana, Vermont and California. As a result, over 50 million Americans live in states where assisted dying is legal. Many other states are currently considering assisted dying laws, including the state of Colorado, which will put a measure on assisted dying to public vote in November.
Suicide rates
In jurisdictions where assisted dying has been legalised, there has been no increase in the number of suicides. In Oregon, where assisted dying for the terminally ill has been legal since 1997, there has been no evidence of an increase in suicide rates caused by the assisted dying laws. According to the Oregon Health Authority:
“The trend in Oregon suicide rates is similar to the national trend— but rates in Oregon are higher.”
It should be noted that the high rate of suicides in Oregon compared with the US average predates the Death with Dignity Act by well over a decade. There is no conflict between the operation of the Oregon Death with Dignity Act and the Oregon Health Authority’s suicide prevention efforts, one of the seven health priorities for the Oregon State Health Improvement Plan.
In those states that have allowed assisted dying, the recorded cause of death for those who have an assisted death is not suicide; it is their underlying medical condition. This rightly distinguishes between a person who takes their own life through suicide and the dying person who is enabled to control the manner and timing of their own death with medical assistance, subject to rigorous safeguards.
It is important to note that in jurisdictions that have legalised assisted dying the number of people who choose to have an assisted death is relatively low, equating to fewer than 0.4% of deaths in Oregon last year, for example.
Professional distinction between assisted dying and suicide
Medical organisations in the USA have seen and experienced the safe practice shown in states like Oregon and elsewhere. Having worked within the framework of an assisted dying law in several states, many have reflected on their own views on the differences between assisted dying and suicide.
The American Psychological Association has explained that:
“It is important to remember that the reasoning on which a terminally ill person (whose judgments are not impaired by mental disorders) bases a decision to end his or her life is fundamentally different from the reasoning a clinically depressed person uses to justify suicide."
Similarly, the American Public Health Association stated that it:
“…recognizes the importance of using accurate language to describe care options. The choice of a mentally competent, terminally ill patient to self-administer medications to bring about a peaceful death is accurately reflected in the term “aid in dying”. APHA does not support the use of inaccurate terms such as “suicide” or “assisted suicide” to refer to the choice of a mentally competent terminally ill patient to seek medications to bring about a peaceful and dignified death.”
Data collection
Our research has highlighted the inconsistency in data collection with regard to recording the presence of a terminal illness in cases of suicide. We believe that a more consistent national approach to recording this data will shed further light on the problem, leading to more informed discussions of how to address the issue of choice and control at the end of life and of how to reduce the number of suicides amongst terminally ill people. We therefore urge the committee to consult coroners on how a more consistent approach could be implemented.
Conclusion
Dignity in Dying welcomes the continued efforts to reduce the number of suicides throughout the UK. We urge the Committee to recognise the important difference between assisted dying and suicide. We also urge the Committee to acknowledge the number of terminally ill people who are taking their own lives in England and to call for more evidence-gathering in this area.