Terminally Ill Adults (End of Life) Bill

b. Majority of psychiatrists are not confident that consent can act as an adequate safeguard. Almost two thirds (65%) of respondents were not confident that consent can act as a safeguard against people making unfree choices, including, for example, those made due to lack of information, coercion or the effects of psychopathology on decision making. Almost one third (31%) were confident.

c. Majority of psychiatrists would not be willing to participate in an AD/AS service. Over half (58%) of respondents said they would not be willing to participate as a medical professional in an AD/AS service, including determinations of capacity or assessing for mental disorder, if it became law in the UK. 30% of respondents said they would be willing to participate.

d. Majority of psychiatrists oppose widening eligibility to include suffering in mental disorder. A majority (64%) of respondents opposed policies that widen eligibility to include suffering in mental disorder, while 18% supported such policies. 

3. It is our view that there are questions which remain outstanding about whether it is possible to provide adequate protections and safeguards for people and, if so, what those necessary measures would be. These details must not be left to the relevant professions to deal with through amendments to existing or new codes of practice following the passing of AD/AS legislation. Taken alone, codes of practice can lack legislative force, and gaps between the details of a code of practice and legislation in this context would be particularly problematic.

4. Therefore, further detail which addresses how the consent procedures will operate in practice should be written into or referred to in the wording of the Bill. Should a group or groups be convened to develop new or amend existing codes of practice in relation to this Bill, we ask that the RCPsych is included among its members, particularly on matters regarding mental capacity.

Consent procedures

5. The Terminally Ill Adults (End of Life) Bill 2024-25 ("Bill") requires a person to have the ability to give valid consent, which comprises relevant information on options, mental capacity to decide to end one’s own life, and for there to be no coercion.

Mental capacity

6. The Bill defines capacity in accordance with the Mental Capacity Act 2005 ("MCA"). Whether or not a person has capacity is a legal determination made at a specific point in time for a particular intervention. These decisions are opinions with a margin of error and are time specific. A person’s capacity can change, and it is decision specific. While we are of the view that a person’s capacity to decide treatment can be reliably assessed, an assessment of a person’s mental capacity to decide to end their own life is an entirely different and more complex determination requiring a higher level of understanding.

7. Mental disorders, such as depression, are more common in people nearing the end of their life [4] . Delirium is more common in those with more advanced illnesses [5] . Decisions can be particularly complex for people with a physical terminal illness and mental disorder. There will be those who have significant histories of mental disorder prior to the physical terminal illness, and others who have mental disorder primarily in the context of their terminal physical illness. Hopelessness is a common symptom of depression and can affect a person’s ability to weigh information in the balance; anxiety can amplify fears of future suffering.

8. In this context, it is also worth thinking about how the types and doses of medication used to help people in acute pain or distress can impact a person’s mental capacity. Suspending such medication in order to facilitate a more capacitous decision, however, may be inappropriate given the level of discomfort this may cause.

9. The MCA is used largely in the context of medical treatment decisions [6] . It requires assessors to assume capacity as a starting point; incapacity must be proven. Assessing clinicians are also under a duty to support a person to make the decision in question. The presumption of capacity may be problematic in the context of AD/AS given the consequence, if the person is deemed capacitous and meets all other eligibility criteria, would be the person’s death.

10. Members have expressed to us that decisions about mental capacity should always reflect the weight of the consequences of that decision. Some have said that a higher threshold for capacity than is currently in law would therefore be needed, while others have questioned whether there can be a threshold at which someone can be deemed as having capacity to decide to end their own life.

11. It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of for AD/AS prior to the passing of legislation and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context. We ask that the RCPsych is included in further consideration and planning about assessments of mental capacity for AD/AS.

12. In addition, the Bill should be amended to require that a person’s mental capacity to decide to end their own life is assessed at multiple stages throughout the application process, including as close as is practicable to the administration of the lethal medication(s).

Coercion

13. The Bill focuses on external coercion. That is, for example, coercion from family members with personal or financial motivations to hasten death. While this type of coercion may not always be clear, internal and societal pressures that may reach the threshold of coercion can be even more difficult to detect.

14. The Bill needs to directly address more subtle forms of coercion, such as where a person may internalise a feeling of being a burden to others. How might such internalised pressure be identified or responded to in this context? At what level would implicit or internal pressures amount to coercion? At what point would supporting a person to have capacity to make a decision to request assistance to die constitute coercion?

15. The Human Tissue Authority ("HTA") trains and oversees a network of independent assessors who interview potential organ donors and recipients to confirm that they have capacity, a full understanding of the choice before them, and are not subject to coercion. In this regard, the HTA provides regulatory oversight of capacity, understanding and coercion in the context of life-changing choices. It therefore may serve as a helpful model for comparable oversight in this area.

Information on options (including palliative care, social care, and mental healthcare)

16. In any assessment of capacity, we must also consider whether a person is making the request because they consider that they are a burden or because they do not consider that they have access to effective treatments or good-quality palliative care. At a population level, palliative care, social care and mental health service provision may impact the demand for an AD/AS service.

17. In an initial or preliminary discussion on the subject of AD/AS with a person, the Bill requires a registered medical practitioner to explain and discuss alternative options with them, including palliative care, management of symptoms and psychological support. It is not clear, however, what the registered medical practitioner should do if the person declines to accept any recommendation about their care. In instances where a person does decline treatment options and is seeking to end their own lives, it may be appropriate for that person to undergo an assessment of their capacity to both decline alternative treatment options and to decide to end their own lives. It should be noted, however, that this would be a novel and complex area of capacity assessment.

18. People at end of life deserve high quality psychiatric treatment. A wish to hasten death is strongly associated with depression [7] . Although the provision of psychological care is a fundamental part of good palliative care, we know that adult patients’ access to such support in UK hospices is limited [8] . Until the provision of such care is improved, it is difficult to see how a person could be determined to be making a choice between options on AD/AS. We do wish to note that access to psychological care for people with palliative care needs is required whether or not AD/AS is legislated.

Conclusion

19. Unanswered questions about the reliability of assessments of capacity to end one’s own life and the adequacy of consent as a safeguard against coercion in this context should be carefully considered by the Committee. It is also important to appreciate the mental health complexities in the population of people with terminal illness. There are potential implications for those with mental disorders, cognitive impairments, intellectual disabilities and neurodevelopmental conditions, as well as on suicide prevention efforts, palliative care and the NHS.

January 2025

Annex 1: Potential impacts for patients & role of the psychiatrist

Royal College of Psychiatrists

January 2025

People with mental disorder, intellectual disabilities and neurodevelopmental conditions

1. While we understand the Bill’s intention is to only make eligible those with a physical terminal illness, there are a range of potential implications for people with mental disorders (including dementia and other brain changes that may profoundly affect decision making), intellectual disabilities, and neurodevelopmental conditions; psychiatry; and the services in which psychiatrists work.

2. It should be noted that, in some jurisdictions where AD/AS has been legalised, there have been subsequent changes or challenges which have resulted in the broadening of eligibility to include those for whom the service was not initially intended. Additionally, we are aware that AD/AS legislation in other jurisdictions has been interpreted as including those experiencing physical effects of mental disorder, such as, for example, those with anorexia nervosa.

3. For decades, the RCPsych has campaigned to prevent people from dying by suicide. Suicide rates remain far too high and the number of people who die by suicide across the UK is extremely concerning. Despite most cases of suicide being linked to mental disorder, at-risk people often face barriers to access treatment, and are not identified and/or offered the mental health treatment that would have reduced the risk of their death.

4. The passing of this Bill would reflect a belief by parliament that a person with terminal illness can rationally choose to end their own life and that the state should assist people who are deemed capacitous and who have made that choice to die. It is important in this context, however, to observe that thoughts of suicide at end of life can be a symptom of mental disorder and distress, and can change (often with treatment).

5. Suicide prevention remains a duty when someone is terminally ill as it is for all people. For someone given a terminal diagnosis, the inevitable loss and grief associated with the end of life should be acknowledged and supported, with space provided to process this profound experience. It is crucial that we remain compassionate and therapeutic, working to prevent destructive paths while providing care and dignity.

Co-occurring mental and terminal physical illness

6. It is difficult to state with certainty that a person’s distress is primarily from an underlying physical illness. A person who has a terminal physical illness is more likely to have depression, and we know that a wish to hasten death is strongly associated with depression [9] . People who have a history of depression may experience a recurrence when unwell with a terminal physical illness. As such, there may be a risk that someone with depression, for example, may be deemed eligible for AD/AS when their desire to die, or their decision making, has been compromised by their mental illness.

7. Assessment of mental disorder in those who are physically ill can take many weeks, trials of treatment and pragmatic conversations. It requires considerable medical and psychological expertise and should be carried out by professionals with sufficient training and experience in conducting such assessments. The difference between symptoms of mental illness and the psychological distress associated with terminal illness can be difficult to distinguish, as can ensuring that any decisions made are free from the influence of untreated mental health issues.

8. An assessment of capacity in this context should also include a determination of whether the presence of a mental disorder is the cause of, or contributing to, a person’s decision to die. Such a determination in this context should include an assessment of whether the person has undergone appropriate treatments for any identified mental disorder that may alleviate a person’s wish to hasten their death.

9. Under the Bill as introduced, a person with a co-occurring mental disorder that is impacting their wish to end their own life would not necessarily be deemed ineligible; only those whose mental disorder was deemed to impair their capacity to make a decision to end their own life would be excluded. For example, a person with terminal cancer may have clinical depression which is influencing their wish to die but be determined in accordance with the MCA as having capacity to decide to end their own life and therefore eligible for AD/AS. While they may be capacitous, they might feel differently at a future time if provided with appropriate interventions and support to treat a co-occurring mental disorder.

10. Additionally, the wording of the Bill could also be interpreted to include those whose sole underlying medical condition is a mental disorder. While anorexia nervosa, for example, does not itself meet the criteria for terminal illness as it is not an "inevitably progressive illness, disease or medical condition which cannot be reversed by treatment," its effects (malnutrition) in severe cases could be deemed by some as a terminal physical illness, even though eating disorders are treatable conditions and recovery is possible even after decades of illness. The Bill should be amended to explicitly exclude physical effects of mental disorder as the basis for eligibility.

11. Dementia is defined as mental disorder in law; under the current wording of the Bill, a person cannot be deemed eligible for AD/AS on the basis of dementia as the sole underlying illness. However, it is important to note that a person with dementia who also has another co-occurring terminal illness may be considered eligible should it be determined that they have mental capacity. A person’s decision to end their own lives in this context may be based on their perception of what it means to live life with dementia, but how a person with dementia might feel at the end stage of their life may differ significantly from what they expect at an earlier stage of their illness. Dementia may be a key factor in a person’s decision to pursue AD/AS.

12. Mental and physical illness is significantly more prevalent in people with intellectual disabilities than in the general population. Separating physical health conditions from mental health conditions for people with intellectual disabilities requires expertise, skills and time due to the subtleties and nuances in their presentation. In particular, people with intellectual disabilities are more vulnerable to coercion, acquiescence, influence and suggestibility. Additionally, people with intellectual disabilities may feel lonely and lack social support, which could influence a person’s decision-making about AD/AS. Such situations can be best ameliorated with robust and comprehensive social care packages.

13. Autistic people experience higher rates of both physical and mental illness than the general population. The risk of suicide by an autistic person is substantially higher than for the general population, particularly for women and in the presence of ADHD. As such, it would be important to assess whether an autistic person’s wish to die in the context of AD/AS was due to unmet support needs, including undertreatment of physical and mental health problems.

14. Autism is associated with several issues which can complicate the assessment of mental capacity and have a bearing on the validity of an individual’s ability to consent to AD/AS. Autistic people can experience a difficulty in weighing choices and can have firm perceptions of how the world works, how it should work, or the causes and consequences of events, making it difficult for a person to judge the authority and motivation of information and informants. Autistic people can experience difficulties associated with attention and concentration, which can hinder their understanding or communication of information, particularly if made worse by physical discomfort (such as from the effects of a physical terminal illness), sensory distraction or anxiety. It is therefore essential that mental capacity decisions for autistic people are not rushed and are repeated on multiple occasions.

Role of psychiatry and psychiatrists

Mental capacity assessments

15. The Bill states that the assessing doctor "may, if they have doubt as to the capacity of the person being assessed, refer the person for assessment by a registered medical practitioner who is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council or who otherwise holds qualifications in or has experience of the assessment of capability…"

16. We understand that the assessing doctor is responsible for determining capacity. Mental disorder may impair capacity. Psychiatrists have expertise in the diagnosis of mental disorders and, to an extent, the impact of those disorders on decision making.

17. However, our members are not unanimous on the question of whether psychiatrists should be involved in every assessment of capacity for AD/AS, or whether they should be involved by request for more complex determinations or for those in which a person has, or is suspected to have, a mental disorder.

18. There is also a resourcing issue on this point; as things currently stand, psychiatry and mental health services do not have the resources to add a significant number of capacity assessments.

Multiprofessional team

19. Assessing a person’s mental capacity, whether they have a clear, settled and informed wish to end their own life, and that they are making the declaration voluntarily without coercion or pressure is not a determination that a psychiatrist – or any professional – should undertake alone. These aspects of the assessment would be directly related to a person’s terminal illness, and a broad range of factors in a person’s life that a single person or professional cannot alone have sight of.

20. Furthermore, given the ethical and moral complexities involved, the moral burden of making critical decisions in this context could be profound, raising concerns about the vulnerability of clinicians and psychological impacts on those involved in the process. A single psychiatrist or professional should not be required to navigate such complex decisions alone.

21. A multiprofessional or multidisciplinary team approach is often used in complex decision-making processes in clinical settings. A determination of someone’s capacity to decide to end their own lives would indeed be complex and multi-faceted, requiring deep understanding, collaboration and input from multiple perspectives. A multiprofessional team can ensure a balanced, reflective approach to decision making, reducing the burden on individual psychiatrists and other clinicians, improving the care provided, and keeping the patient and those around them at the heart of the process.

22. The multiprofessional team might, for example, include the clinician who specialises in the terminal illness, which is the basis for a person’s application, with other professionals included and consulted as necessary and appropriate. This may include psychiatrists in instances where mental disorder is present or suspected and in complex cases (a psychiatrist’s role within such a multiprofessional team may include assessing whether or not a person has a mental disorder that impaired their capacity to make a decision to end their own life). Psychologists, mental health nurses, general practitioners, palliative care specialists, geriatricians, neurologists, oncologists, social workers and legal professionals, for example, may be appropriately placed in certain situations to either determine capacity or contribute to such an assessment.

Opt-in arrangements

23. All clinicians, including psychiatrists, must be afforded the right to not take part in an AD/AS service for any reason, should legislation pass, such as those who conscientiously object on professional, moral, religious or spiritual grounds. An AD/AS service should operate on an opt-in model, and set out which part of a service professionals are willing to take part in. Professionals should not be required to provide justification for not opting in.

24. Under the current Bill, it is not clear whether psychiatrists and other medical professionals will be required to refer a person on for an assessment by a coordinating doctor, even if they do not wish to take part or in instances where patients do not meet the eligibility criteria. For some, doing so would constitute participation in a process to which they personally object or they thought would likely harm their patient, which could lead to moral injury. Additionally, if a psychiatrist is asked to make a referral by a suicidal adult they are treating, and they are required to refer that person on for assessment, then this may impact a psychiatrist’s ability to establish a therapeutic relationship with the patient and continue to treat the person.

25. There would also need to be consideration given to the additional demands this would place on mental health services (both in terms of training and service provision) where one or more staff members do not opt-in to participate in the process. In areas with limited specialist staffing, this could create significant issues in providing capacity assessments in a timely fashion.