Assisted Dying and those with learning disabilities
Our Duty of Care webinar
Our Duty of Care Webinar Monday September 15th
Assisted Dying and people with learning disabilities.
Professor Irene Tuffrey Wijne, a specialist on palliative care for those with learning disabilities who has studied how the Euthanasia legislation in the Netherlands has impacted such people.
The current state of play in the Lords
200 peers put down their names to speak requiring the second reading of the Leadbetter Bill to be extended to two days, the second one coming on Friday September 19th
Several peers expressed opposition for diverse reasons.
Baroness Theresa May: The proposed legislation is really about aiding suicide rather than suicide prevention
The effect on doctors
The effect on those with learning disabilities
Concern about doctors offering suicide
It is likely to pass the second reading and go to the committee stage for more discussion of the detail.
A review of Euthanasia legislation in the Netherlands
6 due care criteria for eligibility since 2001
- Must be voluntary, coming from the patient with capacity
- The suffering must be unbearable with no prospect of improvement
- Informed by a doctor with a prognosis and possible alernatives
- No reasonable alternative
- A second independent opinion
- Due medical care and drugs (administered by the doctor)
It is euthanasia as the doctors give the medication
96% choose for the doctor to give the medication
5% of deaths ( 1 in 20) are now Assisted Suicide in Netherlands. It has been normalized.
Most are for progressive terminal illnesses like cancer
It must be for a medical reason – physical or mental
Doctors have to write a report for a euthanasia review committee which reviews all cases and then selects a number to put online.
Between 2012 and 2021 there were 60,000 assisted deaths in Netherlands. 1000 were reported online.
Between 2012 and 2021 39 cases of the 1000 online were put down to intellectual disability or autism or both as the reason for the suffering which led to assisted suicide.
18 were younger than 50. Depression was the most common reason cited.
Professor Tuffrey Wijne researched how the doctors had assessed that the suffering was unbearable and that there was no possibility of ‘improvement’.
There were a few cases where the criteria were not met
E.g. A lonely autistic person felt they were out of step with society and felt powerless to function as they wanted to. 25% were lonely, did not feel they belonged and could not cope with it
If doctors find it too difficult to assess ‘unbearable suffering’ they referred the person to an ‘end of life’ clinic. If the second doctor did not agree it was referred to a third doctor. This becomes ‘doctor shopping’.
A committee cannot assess if someone’s suffering is ‘unbearable’.
Doctors have to be able to imagine a person’s suffering. But autistic pain is difficult to assess and so doctors have to take the autistic person’s word for it. The suffering of an autistic person is different from that of a non-autistic person.
In quite a few instances there was no physical illness that was terminal. One person found it too difficult to eat more than three meals a day – required because of their condition.
The Dutch ‘openness’ is good and good that there is scrutiny through the reports being made available online. There was a change in the culture and unspoken pressure to accept this way of dying. But there is no 6 month limitation and the law may be being expanded too much. The interpretation of the law expanded while the law itself was unchanged,
Disabled people cannot be excluded from the law on account of their disability because that would be discrimination. The disabled have the same rights as everyone.
UK Differences from the Dutch law
In UK people with severe learning disabilities will not meet the criteria. But those with mild disability will be at risk.
In UK there is nothing in the proposed legislation to prevent the doctor raising the question of Assisted Dying (AD). It can be offered to all.
People with Learning Disability (LD) have internalized the message that they are not as important as others, and are likely to hear the raising of the question as a suggestion that this is the right thing to do.
Coercion works on a societal and cultural level : this is the right thing to do. People will then explain it to others with the same condition. Thus AD becomes normalized and it becomes ‘when’ and not ‘if’. If someone living together with others who have similar problems is offered and accepts AD, then those others will ask ‘what about all the rest of us?’
Those with severe learning disabilities cannot consider and weigh up alternatives,
Health care is not a level playing field. Disabled people have to fight to get the same treatment for health issues. They are often not offered the whole of health care. For example in Covid they were often not offered ventilation.
Mencap are concerned that a suggestion of AD to a person might be construed by them as the right course. That would be ‘undue influence’.
Questions
The issue of medical arrogance. Some doctors do think they know best. The speaker admitted that she could talk a learning disabled person into doing what she wanted.
Doctors want to get it right, they are well meaning, but they can be wrong. They do choose what they tell someone. It is always difficult to convey bad news about a condition. And capacity is very difficult to assess. There can be a power imbalance.
Autism and learning disability is very common and poses a significant ‘at risk’ population. The elderly are also suggestible and might be similarly disadvantaged.
The risk of suicide is much higher in autistic people.
A definition of terminal illness is needed. The legislation does not state that a person must be offered a whole range of alternative treatments. There MUST be a real choice, an alternative. This is where the lack of access to palliative care comes in.
We must realise the risk the legislation poses to those with learning disabilities.
What can we do?
- Write to Peers through letters and emails explaining concerns and passing on stories for them to hear. The Lords discussed the effect on society as a whole a theme which was lacking in the Commons debate which was mainly about the individual.
- It is far from the case that Palliative Care is available for all who need it
- It is impossible to predict survival times
- LD people are the first to be affected by this legislation. They will be the canary in the coal mine. LD distils the key problems.
- Once out of the box, society will lose control. In Oregon the widening of the scope of AD was by the interpretation of the law rather than by changes in the law.
- Campaigning groups will lobby that their groups should be included. Lawyers will always argue from the letter of the law, not from the vision for the law. So pressure groups will hire lawyers to argue for the outcome they desire.
- Is this (AD) how we are to respond to disability? Kill them off.
- Focus on HOPE. That is the key element. Loss of hope can be reversed with proper input. Where there is darkness, shine some light.
Editorial notes
- For details of the thoroughly researched and readable study of the reported deaths of those with learning disability and/or autism from the Netherlands, please see this article by the speaker:
- A point for the debate is that IF this legislation is to be passed, then there must be full reports of each ‘assisted suicide’ by the doctor involved, followed by a regular review of the reports by an independent committee and these reviews should be published. Such a process will take even more time from doctors and involve significant costs.