Event Report: My Death, My Decision?

October 15th, 2024

In this event report, our newsletter editor Frances Lloyd provides an
in-depth account of the thought-provoking talk by Phil Cheatle, Lead Campaign Commentator of the campaign group My Death, My Decision (MDMD).

Phil told the meeting why he had become involved in My Death My Decision. It was due to his personal experience with his mother and aunt. His mother aged 93 knew things were not going to get better and asked him to end her life. Doctors could not help her as she wished. She said “make them see sense”.

We are all living longer. A lot of heart disease and cancer are now curable but there are degenerative diseases such as dementia, motor neurone disease and multiple sclerosis. Dementia and Alzheimer’s disease are the leading cause of death in England and Wales with 1 in 8 of all recorded cause of deaths and 1 in 4 for women over 80.

What is a good death? Free from physical pain, dying in a place of choosing often at home and being with close relatives and friends. Just going to sleep peacefully and not waking up. Living towards the end of life with dignity and being able to do so freely, dressing yourself and your own personal care. Still in control. Before loss of basic mental capabilities and identity. Feeling your life is complete and ready to die. Phil acknowledged that palliative care helps many but not all.

What is legal in the UK? Refusal of medical treatment including artificial feeding, hydration and ventilation (needs to be officially documented, see below). Stopping eating and drinking. Travel to Switzerland for a medically assisted death (on your own). Suicide is legal provided it is unaided. But not assisted suicide or murder.

Phil recommended that we do the following. We need to think what we want and what we would not want. We should discuss this with partner/family/friends/doctors and document our decisions in an Advanced Decision and/or Lasting Power of Attorney on Health and Welfare Decisions. This should be reviewed periodically and, when we need to, make changes.

Why do we need assisted dying? For compassionate reasons. To avoid physical pain and emotional suffering. Alleviate the fear of knowing how bad dying may be. People should not have to suffer intolerably if it’s against their will. We should have autonomy and there should be respect for individual end of life choices. We should respect individual feelings of dignity. Patients should have control over what they consider to be a good death.

Assisted dying issues

Eligibility

• at patient’s request
• mental capacity
• free from coercion
• incurably suffering/terminally ill
• psychiatric conditions?
• adults only?

Safeguards

• 2 doctors’ assessment
• professional counselling
• multiple time separated requests

Implementation

• Self administered/doctor administered
• Integrated with palliative care
• Security of lethal medication
• Doctors’ conscientious opt-out

Two forms of assisted dying with common principles

• mental capacity
• more than one doctor’s assessment
• waiting period

What is happening in other countries?

The Oregon model which is used in some states in the USA, Australia and New Zealand (92 million people)

• Life expectancy of 6 months or less
• Self administered

Canadian model which is used in Canada, Spain, Benelux and Switzerland (260 million people)

• increasingly intolerable suffering or terminal illness
• no life expectancy criteria
• self or doctor administered (latter not in Switzerland)

Over 350 million people worldwide now have access to legal assisted dying.
In Europe a lot of countries either have legislation or are considering it. Switzerland is the only country which will accept foreign nationals.

My Death My Decision favours the Canadian model because life expectancy is unpredictable. It includes incurable suffering e.g. locked in syndrome. Early-stage dementia is included before mental capacity is lost.

My Death My Decision also believes that assisted dying should be an option provided:

• the person is an adult
• has mental capacity
• is terminally ill or has incurable suffering
• is well-informed about their illness and the different options
• it is their own decision
• it is a persistently held decision

Counter arguments to assisted dying

• value of life
• in general, we don’t condone killing people
• doctors go into medicine to cure people and save lives
• “Do no harm”
• the risk of coercion. Will people be pressured into assisted dying? Will people feel they have a duty to die?

BUT people choose to stop medication and/or food and drink NOW. There is no evidence of them being coerced into those decisions. If there is a significant risk of coercion, why don’t we see evidence of it now? There is no evidence of coercion being a significant problem in countries where assisted dying is legal.

Medical opinion in the UK

Since September 2021, the British Medical Association (BMA) has held a position of neutrality. A poll of members showed around half in favour of a change. The Royal College of Physicians and the Royal College of Nursing also hold a neutral position. The Royal College of General Practitioners is split.

Recent developments in the UK

Isle of Man
Assisted dying could become law in 2025 with implementation starting in 2027. It would be restricted to people with a terminal illness with a life expectancy of up to 12 months. Must be patient administered. Must have had residency on the Isle of Man for at least 5 years.

Scotland
Liam McArthur MSP introduced a private member’s bill in March 2024 which is subject to extensive consultation. It is restricted to those with a terminal illness but there will be no time limit on life expectancy.

Jersey
The State’s Assembly is considering assisted dying for terminally ill people with 6 months or less left to live with an extension to 12 months for people with neurodegenerative conditions.

England and Wales
The Health and Social Care committee considered the issue in February 2024. Having looked at the evidence they found nothing to suggest that palliative care would be adversely affected by the introduction of assisted dying. It fell short of recommending a change in the law and didn’t conclude on whether the incurably suffering should be included. It recognised strong public support for a change in legislation (80% in favour).

The Labour Government is committed to a free vote and that it will make parliamentary time available.

In September this year, Kim Leadbetter was first in a ballot for private members bills and on 3rd October her ‘choice at the end of life’ bill was selected. On 16th October the bill had its first reading and on 29th November the second reading with a vote will take place. If it passes the second reading vote there will follow committee stages when amendments will be put forward. It will probably be restricted to the terminally ill and those who are mentally competent. The formal name of the bill is important. Kim has been consulting widely on the issues and what is happening in other countries.

My Death My Decision

They have been campaigning for the law to include the incurably suffering and not to have a life expectancy criterion in the definition of “terminally ill”. There is an open letter to Kim Leadbeater on their website from many supporters with personal experience that supports their position. If we agree with their aims we can become a supporter, share stories with them of cases where people feel there is a need for a better approach. Write to our MP and newspapers. Comment on the website. Help financially through donations and legacies.

Why are there two organisations – My Death My Decision and Dignity in Dying?
Dignity in Dying has more limited aims than My Death My Decision with assisted dying to only be available if the person has a terminal illness with 6 months or less to live. However, both are working together as any change in the law is better than the current situation.

Following Phil’s talk there was a wide-ranging discussion which included:
• GPs. They’re already overworked and there are financial issues.
• Cost. Would we pay privately or would it be available on the NHS? Phil said it should be provided on the NHS but not part of their current campaign. If not, the cost wouldn’t be anything like as much as going to Switzerland. Lot of cost in supporting people in their final year of life. If it becomes legal a way will be found to fund it.
• There are many discussions going on with some very vocal groups on both sides. There is a small but strong disability lobby against a change. They do not speak for the majority of disabled people who are in favour of a law change. The majority of disabled advocacy organisations are neutral or unspecified on their position on assisted dying.
• What drugs would be used with the concern about issues on medication in executions in the USA. Phil said there are some problems with the supply of effective drugs in the USA.
• Mental capacity which becomes incapacity. In the Netherlands people can make the decision in advance when they have capacity and it can then take place even if capacity has been lost.

The Chair decided at 9 p.m. that the meeting would be brought to a close as otherwise it could have gone on all night!