Terminally Ill Adults (End of Life) Bill

Written evidence submitted by the PSP Association (PSPA) (TIAB92)

About PSPA

1. PSPA is the UK’s only charity supporting people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD, also known as Corticobasal Syndrome or CBS). PSP & CBD are rare, progressive and life-limiting neurological conditions that typically affect people later in life. There are no treatments and no cure for either condition, however symptoms can be managed by health and care services. PSPA estimates that around 10,000 people in the UK are living with PSP or CBD, although only around 4,000 have an accurate diagnosis.

2. PSPA works to enable people living with PSP & CBD and their families to live their best possible lives by providing information and support, and to improve the quality of life of people living with PSP & CBD through research, education and awareness-raising. We also campaign for the changes needed to create a better future for everybody affected by PSP & CBD.

PSPA’s position on assisted dying

3. PSPA does not campaign for or against a change to the law on assisted dying. This reflects the range of views amongst our service users and those we support. PSPA’s most recent Patient Survey in 2022 found that, regardless of whether they would want the choice for themselves, 83% of respondents felt the option of assisted dying should be made legal by Parliament. We know from our work that people living with PSP & CBD that they want a full range of choices at the end of life, including access to palliative care services, open conversations about prognosis and treatment and the option to refuse life-sustaining treatment. It is also notable that fewer than half of respondents to our 2022 Patient Survey felt in control of their end of life care.

4. While we do not campaign for or against a change in the law, PSP & CBD are terminal illnesses and PSPA wants our service users’ voices to be heard in conversations about assisted dying and end of life care in general, so that laws and policies developed reflect the needs and realities faced by dying people.

5. Based on our experience supporting people living with rare, terminal neurological conditions that cause significant physical and cognitive changes, PSPA is concerned that some of the safeguards proposed in the Terminally Ill Adults (End of Life) Bill may not be practicable for people living with conditions like PSP & CBD or require more consideration. For example, accurately predicting whether somebody living with the conditions has six months or fewer to live , judging capacity and recognising coercion are extremely difficult , while the requirement for a person seeking an assisted death to self-administer a substance to end their life is likely to prove challenging for a person in the advanced stages of PSP or CBD. PSPA is concerned that there is a risk that the Bill may create a right to an assisted death that could only be exercised in practice by some terminally ill people and not others . We are also concerned that , without addressing significant variations in access to specialist and palliative care across the country, many people living with conditions like PSP & CBD may feel that their only option is to seek an assisted death due to a lack of available care and support.

Provisions of the Terminally Ill Adults (End of Life) Bill

Clause 1. Assisted dying

6. Clause 1( 1)(a) of the Bill requires that , to seek an assisted death , an individual must have " capacity to make a decision to end their own life." Capacity is defined (Clause 3) as in accordance with the Mental Capacity Act 2005.

7. Assessments of mental capacity will require careful consideration for people with neurological conditions like PSP & CBD. Both conditions can affect cognition, including executive function, memory, behavioural changers and communication issues leading to loss of speech. Patients’ experience varies widely, with some experiencing very mild changes and others experiencing severe changes in personality and behaviour. These changes may affect a person’s capacity as defined by the Mental Capacity Act 2005 in some cases but not others ; capacity must be judged on an individual basis. Conditions like PSP & CBD can also lead to mental health symptoms like depression or apathy, which may make a person more likely to request an assisted death – but which could be addressed through mental health support.

8. PSPA believes that any assessment of capacity to seek an assisted death must include a requirement for people with neurological conditions like PSP & CBD to have their capacity assessed by a clinician who has expertise in assessing people with neurological conditions.

9. We also believe that in addition to assessment by a doctor, a qualified mental health professional must be involved in the assessment process when an individual seeks an assisted death, to ensure conversations about a person’s motivations include an assessment of their psychological and social situation.

10. Clause 1(2)(b) requires steps to be taken to establish that a person seeking an assisted death has not been "coerced or pressured" by any other person into doing so. The Bill envisages medical professionals making this determination (Clause 7, 8) . The Bill Committee should be aware that recognising coercive or controlling behaviour can be extremely challenging and is not part of most medical professionals’ education or training . Coercion can also come from medical professionals themselves; for example, people with neurological conditions were among those who experienced the imposition of Do Not Resuscitate orders without consultation or consent during the Covid-19 pandemic .

11. It is unclear how the safeguard proposed in this Bill will prevent coercion i n practice , given the lack of requirement for those making decisions under the proposed regime to have any training in recognising coercive or controlling behaviour.

12. PSPA believes that additional consultation is required on how safeguards to protect individuals from coercion will work before an assisted dying law is implemented, to ensure that vulnerable people are safe from abuse or not coerced into seeking an assisted death .

Clause 2. Terminal Illness

13. Clause 2(1) would make an assisted death available to those with "an inevitably progressive illness, disease or medical condition" where death can be "reasonably expected … within six months."

14. It is anticipated ( C lause 7, 8) that the determination as to whether a person has an inevitably progressive condition, and their likely prognosis, will be made by two medical professionals (the "coordinating doctor" and the "independent doctor") . Predicting how long a person has left to live can be especially challenging for clinicians when considering people living with neurological conditions like PSP & CBD, with estimates based on survival statistics proving unreliable when applied to individuals. This is especially the case when clinicians are asked to estimate life expectancy over periods of months or years [1] .

15. Both PSP & CBD are life limiting, with a life expectancy of around 5-7 years from onset for PSP and 5-10 years for CBD. In individual cases, however, sudden deaths can occur, and people can survive for a relatively long time with advanced symptoms. This raises concern that people living with PSP & CBD might be found ineligible for an assisted death based on an inaccurately-optimistic prognosis, or found eligible for one based on an inaccurately-pessimistic one when they might have had longer to live.

16. The definition of terminal illness in Clause 2 appears to be based upon definitions currently used in benefits law , where terminal illness has been defined since 1990 with a ‘time limit’ of six or twelve months to enable those with a terminal illness to access fast track benefits support. The Bill Committee should be aware that the ‘six-month rule’ in benefits law was replaced in 2022 with a definition of terminal illness based on a twelve-month definition , with support from medical professionals consulted by the Department for Work & Pensions , in large part because of recognition that a six-month definition of terminal illness lacked clinical relevance and was challenging for those with variable conditions where it is difficult for medical professionals to make a clear prognosis.

17. PSPA believes that the Bill Committee should consider whether a definition developed for the purpose of making access to financial support easier is appropriate to be used when defining eligibility for an assisted death, and should consider whether it is appropriate to include a six-month definition in this B ill when this has been replaced elsewhere in UK law .

Clause 4. Initial discussions with registered medical practitioners

18. Clause 4(1) makes clear that no medical practitioner is under any duty to raise the subject of assisted dying with their patients and Clause 4(3) ensures medical practitioners are not required to participate in the process if assisted dying is raised by their patients .

19. In 2020 the British Medical Association surveyed its members and found reluctance among many to participate in the process of assisted dying, should it become legal [2] . Willingness to participate varied significantly by speciality, with those involved in palliative care, General Practice and neurology less likely than average to be willing to participate in the process . This raises concerns about a lack of capacity in the system , should assisted dying be made legal, for patients with conditions like PSP & CBD, where a large proportion of relevant specialists may be unwilling to take part in the process at all.

20. Clause 4( 2) would enable a medical practitioner to raise the subject of assisted dying with a patient if it was "their professional judgement" that it was "appropriate" to do so.

21. PSPA believes that the Bill Committee should consider whether it is appropriate to enable medical professionals to raise the subject of assisted dying with patients who have not expressed a wish to seek an assisted death. It is unclear how including this provision is compatible with the Bill’s intent to prevent individuals being coerced by any person into seeking an assisted death.

22. Clause 4(3) requires a medical practitioner to conduct an initial discussion with a person seeking an assisted death or refer them to another medical professional to do so (Clause 4(5)) .

23. This discussion, and the further stages of declaration (Clause 6) and assessment (Clause 7, 8), are likely to occur when a person’s condition is significantly advanced – with a reasonable expectation that they might die within six months. PSP & CBD are progressive conditions that can both affect a person’s capacity for speech ; as the conditions progress many people lose their ability to speak or communicate verbally entirely . In addition , the physical symptoms of both conditions can cause people with PSP & CBD to lose the use of their extremities – in effect, somebody with advanced PSP or CBD may have significant difficulty communicating either verbally, in writing or by using digital technology. It is unclear how somebody in this position would be able to participate in either an initial discussion or a later declaration or assessment.

24. PSPA believes that the initial discussion under Clause 4(3) and the initial declaration under Clause 6 should be able to take place in advance of the assessments under Clause 7 and Clause 8, as part of Advanced Care Planning discussions about a person’s wishes for their care and treatment at the end of life.

25. Clause 4(4)(b) and (c) require that a medical practitioner must discuss with a person seeking an assisted death "any treatment available" as well as "palliative, hospice or other care."

26. Support for people living with terminal illness varies significantly across the country, with patients often feeling like they are in a ‘postcode lottery’ when accessing treatment, care and support. This is especially the case for people affected by rare conditions like PSP & CBD; in our 2022 Patient Survey 40% of respondents said they did not receive all the healthcare they needed, when they needed it, with 27% reporting they were not receiving support from any specialist practitioner. This reflects wider trends in access to palliative care; according to research conducted for the hospice charity Sue Ryder, while as many as 90% of people who die in the UK might benefit from palliative care at the end of life, in practice only around 50% of people who die in the UK receive it [3] . Given this backdrop, there are concerns that some people may feel that an assisted death is their only option.

27. PSPA believes that an evaluation of a person’s care and support should be included in the assessment process for an assisted death, not just discussed at the initial conversation, to ensure that a lack of access to the right care and support does not lead to individuals feeling their only option is an assisted death.

28. PSPA also believes that it is critical that increased investment in high-quality palliative care services takes place before or alongside any assisted dying regime being implemented, so that terminally ill people do not feel forced to seek an assisted death because they cannot access palliative or end of life care, or because their quality of life is being impacted by receiving a poor standard of care.

Clause 7. First doctor’s assessment (coordinating doctor)

29. Clause 7(2) (b) requires the coordinating doctor to assess whether a person seeking an assisted death has capacity to make the decision to end their own life. Clause 7(2) (g) requires the coordinating doctor to assess whether the person has made the declaration voluntarily and has not been coerced or pressured.

30. As outlined above, PSPA believes there are concerns over how these safeguards w ould operate in practice for people with neurological conditions like PSP & CBD given the complex ways these conditions affect mental capacity and the lack of any requirement for the coordinating doctor to have specialist knowledge in the patient’s condition, and the lack of any requirement for the coordinating doctor to have any training in recognising coercive or controlling behaviour.

Clause 8. Second doctor’s assessment (independent doctor)

31. With respect to Clause 8(2)(b) and Clause 8( 2)(e), see above comments on Clause 7.

Clause 9. Doctors’ assessments: further provision

32. Clause 9(3)(a) requires that if either the coordinating doctor or independent doctor "have doubt as to whether the person being assessed is terminally ill," they must refer the patient to another medical practitioner who has experience or qualifications in relation to that condition.

33. As outlined above, for people living with neurological conditions like PSP & CBD it is not whether the condition is terminal that is in doubt, but their prognosis. The conditions affect each person differently and predicting life expectancy is very challenging, with individuals’ experiences varying considerably from prognostic tables. While a specialist may have expertise in treating people with neurological conditions like PSP & CBD, without knowledge of an individual’s case and how their PSP or CBD has progressed it may be challenging for them to make a meaningful judgement as to whether that person has six months or fewer to live. In addition, as PSP & CBD are rare conditions, there are few specialists in the UK with expertise in either condition .

34. 7 Clause 9(3)(b) enables either the coordinating doctor or independent doctor to refer the person seeking an assisted death for an assessment by a psychiatrist or other specialist with expertise in capacity "if they have doubt as to the capacity of the person being assessed."

35. Given the importance of ensuring that an individual has the capacity to make a decision to end their own life as a safeguard, it is unclear why this provision is that a medical professional "may" refer the patient for a n assessment of their capacity , rather than that they " must " do so as in Clause 9(3)(a).

36. PSPA believes that, where a medical practitioner has doubt as to the capacity of the person being assessed, they must refer that person for assessment by psychiatrist.

Clause 18. Provision of assistance

37. Clause 18(2) would allow the coordinating doctor to provide the person seeking an assisted death with an approved substance to end their own life. Clause 18( 6) would allow the coordinating doctor to prepare this substance for "self-administration" by the person and "assist" the person to self-administer the substance, but Clause 18(7) requires that the "final act of doing so" must be taken by the person and Clause 18(8) explicitly does not authorise the coordinating doctor to administer the substance themselves.

38. Given the reluctance of many medical professionals to actively participate in assisted dying as outlined above and as found by the British Medical Association’s survey in 2020 [4] , in practice many individuals who seek an assisted death may be expected to administer the approved substance by themselves without assistance. The Bill Committee should be aware that many terminal illnesses cause patients physical impairments which could make it difficult for them to self-administer. PSP & CBD both cause movement and mobility difficulties such as rigidity, stiff joints and limited use of extremities, which in advanced stages are likely to render a person unable to self-administer medication. This raises the risk of individuals with these conditions and other, similar conditions being able to seek an assisted death and being assessed as eligible for one, but at the last being unable to self-administer the approved substance to end their lives.

39. PSPA believes that the Bill Committee should consider whether self-administration requirements have the unintended consequence of leaving people with physical impairments unable to give effect to their wishes.

24 January 2025