Assisted dying – background information

As Ian explains in his blog, the British Medical Association (BMA) recently voted to change its opposition to assisted dying and has taken a neutral stance, neither opposing nor supporting attempts to change the law.

Changes to the legislation on assisted dying is being debated in both Westminster and Holyrood; a private member’s bill to legalise assisted dying in England and Wales had it’s second reading in the House of Lords; in Scotland, a member’s bill was introduced earlier this year and a public consultation is currently underway.

In this article we give an overview of assisted dying, look at what the bills are proposing and the experience of legalised assisted dying around the world.

We’d like to hear your views on assisted dying, so please consider completing our survey (see below for more details) by 22 December. We’ll report back on the results of the survey in the new year.

What is assisted dying?

There is no universally agreed definition of assisted dying. Many different terms are used in the assisted dying debate. In this article we use the following terms:

• Assisted dying is used to describe prescribing life-ending drugs for terminally ill, mentally able adults to administer themselves within strict legal safeguards.
• Assisted suicide is used to describe prescribing life-ending drugs to people with long term progressive conditions and other people who are not dying. The drugs are self-administered.
• Voluntary euthanasia describes the situation where a doctor directly administers life-ending drugs to a person who has given consent.

What is the current law on assisted dying?

Assisted dying is illegal in England and Wales under the Suicide Act (1961), and in Northern Ireland under the Criminal Justice Act (1966) which states that anyone who “encourages or assists a suicide” is liable to up to 14 years in prison. Not all cases are prosecuted; in 2009, campaigner Debbie Purdy – who had MS – won a legal case which required the Director of Public Prosecutions to issue guidelines on what makes a prosecution more or less likely. Since 2009, three cases have been successfully prosecuted out of 171 cases referred to the Crown Prosecution Service.

There is no specific crime of assisting a suicide in Scotland, but it is possible that helping a person to die could lead to prosecution for culpable homicide. The Scottish legal system also recognises that “it is not a crime to assist in a suicide” but there are no published guidelines. This approach generates considerable uncertainty about what conduct is and is not lawful.

What are the new bills proposing?

Assisted Dying Bill – England and Wales

The proposed law would allow adults who are terminally ill, mentally able and in the final six months of their life to request assisted dying. Two independent doctors and a High Court judge would assess each request. After a 14-day reflection period (shorter if death is imminent), self-administered, life-ending drugs would be prescribed.

The bill was introduced at its first reading in the House of Lords in May. The second reading took place on 22 October and is due to be examined line by line at Committee stage; the date for this is yet to be scheduled.

More information about the House of Lords bill. 

Assisted Dying for Terminally Ill Adults (Scotland) Bill

The Bill would allow terminally ill, mentally able people to request assistance to end their lives. Terminal illness includes people with progressive condition deemed by doctors as ‘unable to recover’, regardless of the time they have left to live. Two independent doctors would assess each request. After a 14-day reflection period, a health professional would provide self-administered, life-ending drugs and remain present while the medicines are taken.

The bill was lodged with Scottish Parliament in June 2021 and is currently open for public consultation until 22 December.

More information about the Scottish Parliament bill.

What does this mean for people with MS?

Both bills include vital safeguards to protect vulnerable people, but these could also limit access for some people with MS.

The House of Lords bill requires two independent doctors to confirm that the person requesting assisted dying must be reasonably expected to die with six months of making the request. This can be a difficult judgement to make for somebody with advanced MS. The Scottish bill covers people with a progressive condition ‘unable to recover’ regardless of how long they have left to live.

Both bills require that any medicines provided must be self-administered, but also allow the use of a device to aid self-administration, for example, by pressing a button to start a motor-driven syringe.

Arguments for and against legalisation of assisted dying

There are strongly held views on both sides of the debate on assisted dying. Here are some of the key arguments used by supporters and opponents.

Those who support assisted dying often use the following arguments:

• Even with access to high quality palliative care, some dying people still experience severe, unbearable physical or emotional distress. Assisted dying would relieve intolerable suffering.
• Guidance for end-of-life practices, such as withdrawing life-sustaining treatment, already contains safeguards to ensure decisions are made voluntarily. These safeguards could be used effectively in assisted dying.
• Access to assisted dying services such as Dignitas is only available to those who can afford it. The need to travel overseas often leads to people ending their lives sooner than they would have wished.
• People should be able to choose their own time and place of death.
• Current legislation is unclear; it would be fairer and safer to have a properly controlled and regulated system in the UK.
• Widespread public support for assisted dying.
• The existence of legislation to allow assisted dying would bring reassurance and peace of mind to many people and their loved ones, even though only a small percentage actually use it when the time comes.

Those who oppose assisted dying often use the following arguments:

• Law sends social messages. An assisted dying law alters society’s attitude towards the elderly, seriously ill and disabled and sends the subliminal message that assisted dying is an option they ‘ought’ to consider.
• Safeguards are simply statements of what would happen in an ideal world. They do not reflect the real-world stresses of clinical practice, terminal illness and family dynamics. Many doctors know little of people’s lives beyond the surgery or hospital ward. It is impossible to ensure that decisions are truly voluntary and that any coercion or family pressure is detected.
• We should be calling for universal access to high quality generalist and specialist palliative care to alleviate distressing symptoms, rather than legalising assisted dying.
• Assisted dying would be seen as an opportunity to reduce funding for palliative care
• Licensing doctors to provide lethal drugs to patients is fundamentally different from withdrawing ineffective life-sustaining treatment. Role of doctors is to support people to live as comfortably as possible until they die, not to deliberately bring about their deaths.
• Changes doctor-patient experience and undermines trust. Some people already feel that their lives are unvalued and would fear that health professionals would simply ‘give up’ their efforts to relieve distress.
• Once the principle of assisted dying has been accepted, it would be easier to introduce wider eligibility criteria, sometimes referred to as a slippery slope.

Where has assisted dying been legalised?

Assisted dying is a legal option for over 200 million people around the world. In places where it is lawful, there are eligibility criteria, safeguards and regulations in place to protect people.

Places where assisted dying has been legalised include:

• Assisted dying as defined above is legal and regulated in several US states, parts of Australia and New Zealand.
• Assisted suicide is permitted in Switzerland.
• Voluntary euthanasia is permitted in Belgium, Luxembourg, the Netherlands and Canada.

Oregon, where assisted dying was legalised in 1997, has the longest experience. The legislation requires the Oregon Health Authority to publish annual reports. Numbers of people requesting assisted dying have steadily risen each year. In 2020, 370 people received prescriptions and 245 took assisted dying drugs (0.7% of all deaths). Most patients were aged 65 years or older (81%) and white (97%). While cancer still accounted for most underlying illnesses (66%), patients with heart disease (11%) outnumbered those with neurological disease (8%) for the first time in 2020. Most patients died at home (92%) and most were enrolled in hospice care (95%). Disability Rights Oregon has said that they have never “received a complaint that a person with disabilities was coerced or being coerced to make use of the Act”.

What are your views on assisted dying?

As an organisation we appreciate that there is a range of views on this challenging and emotive topic and we respect that everyone has the right to their opinion. It is important to us that we understand the views of people living with MS, their family, and friends to help us shape the information that we provide and inform our thinking on this issue.

We would like to know the opinions of people affected by MS and ask you to complete this short survey by 22 December. The results of the survey will be published in the new year.

If you need more information on the topics covered in this article, call our Enquiry Team on 0800 032 3839 or email ask@mstrust.org.uk.

If you have been affected by any of the issues call the Samaritans 24 hours a day from any phone, on 116 123.