Disability Labour – The National Committee of Disabled Members

Disability Labour made a formal submission to the Committee looking at the Terminally Ill Adults (End of Life) Bill. The text of our submission is below:

Disability Labour is a socialist society affiliated to the UK Labour Party. We represent and support disabled Labour members and family carers in the United Kingdom.

SUMMARY
Our response was drafted by a team of members with a variety of impairments, health conditions and caring responsibilities and amended by a quorate meeting of national executive members who agreed the final version unanimously. The response is based on the result of a survey of our members and the many concerns that were raised in response to that survey.

There was a strong sense the needs of disabled people have not been as thoroughly addressed as we would like, especially in terms of safeguarding. There needs at times to be more precise clarification of the roles of medical practitioners and other staff. There also appears to be a limited understanding of how coercive control operates in different forms. We feel that there is a need for better and more available palliative care. Finally, more information is needed about drugs used, the role of privatisation, and economic considerations.

Above all we believe that Assisted Dying must never be considered a substitute for fully available healthcare and support.

SAFEGUARDS FOR DISABLED PEOPLE

1. The United Nations Convention on the Rights of Disabled People requires government to promote the rights of disabled people in policies and practices and in developing and implementing legislation through active involvement with disabled people’s organisations (FN1)
   
2. We are concerned that disabled people are mentioned only once in the bill, in 4.2 (3)(b) and that there appears to be a worrying lack of awareness of the definition of disability contained in Section 6 of the Equality Act 2010 and further described in the accompanying guidance. (FN2) The bill has been presented as being designed to help people suffering from long term irreversible health conditions but such conditions including cancer are specifically included under the Act’s definition of disability. It would be a nonsense to present the idea that the bill is intended to allow people with such conditions to access assisted dying whilst simultaneously barring them from being able to do so. We do not however support the idea of withdrawing safeguards for disabled people – this needs greater consideration. We are also concerned about the wording of 2 (3) (a) as it is not clear.
   
3. We are concerned that whilst 10 (3) only allows for one second opinion to be sought, there appears to be nothing in the bill that stipulates a waiting period before a new application can be made. This risks applications being repeated until a supporting opinion can be obtained, thus negating the purpose of 10 (3).
   
4. As has been pointed out by numerous respondents, doctors are notorious for not being able to give accurate prognoses therefore the 6 month cut-off is an inexact science and maybe affected by other factors including economical and social.
   
5. Section 12 (5) (a) states that the High Court may hear from the person who made the application. We believe that the High Court must hear from the person making the application although this shouldn’t have to be directly in person.
   
6. We believe section 12 (11) should be removed or amended to allow appeals against granting an application, especially where new evidence of coercion may be found.
   
7. We believe section 15 (5) b “a person of good standing in the community” is ambiguous and should be removed. Furthermore, if retained, the requirement to have known the person for two years should also apply to this section.
   
8. We are concerned that section 42 (3) enacts all the elements of the Bill automatically after two years from the passing of the Bill. This would result in the legislation coming in to full effect even if the necessary Statutory Instruments and safeguards had not yet been put in place.
   

CHANGES IN ROLE OF MEDICAL PROFESSIONALS

9. Under 4 (2) we are concerned at medical professionals being allowed to initiate discussions on assisted dying with patients as this may in effect be considered undue influence. We are also concerned that the wording in section 4 regarding preliminary discussions is ambiguous.
   
10. “Registered Medical Practitioner”:4 (3 (a); 7 (3)( c); 8 (6) (a); 8(8); 19 (1); etc covers a range of medical roles and expertise. We are also aware that there is a shortage of GPs and that this will take some time for the government to be able to address. We would feel more comfortable with a bill which required life/death decisions to be made specifically by doctors with specialised knowledge of the relevant health condition.
    
11. 7 (2) (g). We no longer have surgeries with family doctors or specific doctors assigned to patients. Some surgeries buy in triage systems supplied by private firms which allocate appointments according to who’s available. This can mean being seen by someone in a completely different practice, and/or someone not familiar with patient records – even familiar doctors have confessed that appointment timings do not allow for time to catch up on patient records. Where more than one issue is brought up separate appointments for each issue are required which makes it difficult to assess the effects of the way impairments/conditions combine. This also makes it more difficult to identify for example where coercion is likely to be a factor.
    

COERCION

12. When it’s difficult for the assigned doctor to have any real knowledge of a patient it is unlikely that they can make an informed decision as to whether a patient has been coerced into asking for access to assisted dying. There is also a very narrow understanding of the forms coercion might take throughout the bill.
    
13. Those tasked with deciding whether a patient has been coerced may have, in case of the first doctor, little knowledge of the patient and, in the case of second doctor, none at all; similarly with a judge. 8 (2) (e); 12 (3) (h); 18 (4) (c); 26; 39(B) 1 (b)
    
14. In classic cases of coercion like for example those listed in the Domestic Violence Act 2021, identifying coercion is often difficult. Many women hide the fact they are being coerced into particular kinds of behaviour, whilst outside the home this may look as if they are doing this willingly. On average those experiencing domestic violence endure abuse for seven years before talking about it to another person (FN3). This also applies to people in the early stages of dementia prior to formal diagnosis who could be coerced in to seeking an assisted death which would not be possible after diagnosis.
    
15. Relationships between family carers and disabled people may become stressful. This may result in those relying on care becoming overly concerned about their carer resulting in a relationship of coercion.
    
16. It is not clear how “coercion” is being interpreted. Societal coercion may stem from popular accepted attitudes – for example presenting illness and ill people as a drain on resources, a problem for families – and even individual learnt attitudes “I do not want to be a problem for my family”. It is notable that many older people who contact the Samaritans are depressed as a result of the fear of becoming a burden on others. (FN4)
    
17. Poverty and deprivation including for example the inability to find accessible housing, the means of earning an income or the cost of care can also lead to a wish to die. Although Canada has a different system, the fact that many people find themselves in intolerable circumstances has been a factor. (FN5). In Britain an increasing number of people have become desperate enough to take their own lives as a result of sanctions by the Department of Work and Pensions.(FN6)
    

PALLIATIVE CARE

18. Britain was until recently listed as having the best palliative care in the world but since COVID it has dropped to fourth. Palliative care has been considerably less available than needed even in Britain: palliative care in other countries has been even worse. (FN7). Access to palliative care is not available for many people.
    
19. Those in lower income groups are considerably less likely to have access to palliative care.
    

COSTINGS, PRIVATISATION AND ECONOMIC CONSIDERATIONS

20. There has recently been a significant degree of concern in a parliamentary debate about the lack of information about costings for Assisted Dying. (FN8). We are concerned as to what the impact will be on a National Health Service already under pressure from lack of funding.
    
21. Concern has also been expressed as to whether privatisation will be increased in order to implement the measures in the Assisted Dying bill.
    
22. There is as yet no information about the medications that will be used, where they will be sourced from and at what cost. Given the current lack of NHS funding and the effect on the availability of other medications currently needed, this raises grave concerns.
    
23. 20 (1) and (2): “Secretary of State to make provisions re drugs used”: We are concerned about the lack of information regarding what factors will affect the choice of these drugs.
    

ONE GENERAL CONSIDERATION

24. Concern has been expressed that given the difficult circumstances which limit NHS provision for those living, the introduction of Assisted Dying may limit healthcare provision. As disabled people we also need to be assisted to live.
    

FOOTNOTES
FN1: https://social.desa.un.org/issues/disability/crpd/article-4-general-obligationsFN2: https://www.gov.uk/definition-of-disability-under-equality-act-2010
FN3: https://www.google.com/url?q=https://www.cps.gov.uk/legal-guidance/controlling-or-coercive-behaviour-intimate-or-family-relationship&sa=U&sqi=2&ved=2ahUKEwiamO_wm5OLAxU6WUEAHbktGAoQFnoECBIQAQ&usg=AOvVaw2p-jnd5pv2lLmjnmPPwLm3
FN4: information provided by Samaritans volunteer
FN5: https://pmc.ncbi.nlm.nih.gov/articles/PMC9344489/
FN6: https://www.google.com/url?q=https://www.plutobooks.com/9780745349893/the-department/&sa=U&sqi=2&ved=2ahUKEwjo-amRnZOLAxUnVUEAHUISBZAQFnoECDIQAQ&usg=AOvVaw22QdXtjKNCFfVzFRrHIFxv
FN7: https://www.google.com/url?q=https://www.gov.uk/government/statistics/palliative-and-end-of-life-care-profiles-december-2023-data-update/palliative-and-end-of-life-care-profile-december-2023-update-statistical-commentary&sa=U&sqi=2&ved=2ahUKEwjYuOqRn5OLAxXyQUEAHdJrKcsQFnoECBIQAQ&usg=AOvVaw2RHUEMyMEZ79SS63543sC0
FN8: https://www.google.com/url?q=https://hansard.parliament.uk/commons/2025-01-22/debates/A9C9EF44-7075-4537-A056-4418DE786619/TerminallyIllAdults(EndOfLife)Bill(Money)&sa=U&sqi=2&ved=2ahUKEwjelpzZn5OLAxVuW0EAHZs4K5kQFnoECBMQAQ&usg=AOvVaw3YSxRzI2SgHg583Kz4eeOg