Terminally Ill Adults (End of Life) Bill (Twentieth sitting)

Kim Leadbeater Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship again, Sir Roger.

Amendment 301 would prolong the first period of reflection, after which point the independent doctor can conduct the second assessment. In the original draft of the Bill, the first period of reflection is seven days, but the amendment would extend that period to 14 days. That means 14 days would have to pass between the time that the co-ordinating doctor has made their statement following the first assessment, and the independent doctor carrying out the second assessment.

Amendment 317 would increase the duration of the period of reflection before a person may make a second declaration from 14 days to 28 days. It relates to cases where a person’s death is not reasonably expected within one month of the date of the court’s declaration.

Amendments 314 and 315 would increase the duration of the second period of reflection before a person may make a second declaration, in cases where a person’s death is reasonably expected within one month of the date of the court’s declaration, from 48 hours to seven days. They would also introduce a requirement for a mandatory immediate referral for urgent specialist palliative care. The requirement would be introduced into the definition of the second period of reflection. It is unclear what impact it would have on the duration of the period of reflection. The amendments do not say who should be responsible for making the referral or where it should be recorded. The drafting is also ambiguous as to what happens if a person does not consent to such a referral or care.

I hope these observations are helpful to the Committee in considering the Bill and the amendments put forward by various Members. Whether these amendments should form part of the Bill is a matter for the Committee to decide.

[Kim Leadbeater (Spen Valley) (Lab)]

I have nothing to add on this group of amendments. I am confident that the Bill as drafted already includes significant periods of reflection. Bearing in mind that we are putting dying people through a very lengthy process already, I remain confident that the periods of reflection are adequate as set out in the Bill.

[Naz Shah (Bradford West) (Lab)]

I have a couple of additional comments. We talked last week about the reflection periods. I referred to the fact that when even someone buys something from a shop, they have 28 days to return it; when they are deciding on whether to have an assisted death, there is a great deal more at stake. During that debate, someone asked, “What if someone had a prognosis of just one month?”, but clause 13 has an option for a fast-track process in that situation—the person would be able to access the service in 48 hours.

I beg to differ with my hon. Friend the Member for Spen Valley, the Bill’s promoter, who said that we have enough reflection periods in the Bill. Yes, there are reflection periods, but they come after the panel’s decision. The reality is that the NHS is under so much duress, with patients waiting weeks to see their GP for anything other than urgent treatment, that getting an appointment with another GP in seven days is unlikely; it is unlikely to happen given how uncommon that is at the moment. It is right that doctors are able to triage their patients to prioritise those who require medical intervention to keep them well, to prevent hospital admission, or to stop them deteriorating or even dying.

The Government are trying to protect the NHS, and the best way of achieving that is to ensure that medical interventions are provided at the earliest opportunity before a patient deteriorates. In some cases, a medical appointment may need to take priority over an appointment for an assisted death. If someone who is dying has longer—even just a further week—in which to reflect, it removes the pressure from GPs and consultants, and enables them to prioritise properly their patients. It does not build up false expectation in patients that they have a right to a rapid consultation process. Likewise, we know that it can currently take a few weeks for patients to see another consultant, if not months or even over a year. It is therefore more helpful for the patient to have a more realistic period of reflection before moving to the next stage of their assessment.

Issues of such intensity as someone planning to take their own life should not be rushed. We know from all the work that has been undertaken on suicide that other interventions and conversations can help with reflection and reconsideration. It is important that people are given this opportunity. In their first raising the matter with a doctor, the doctor would have provided a lot of information about alternatives to the patient, such as what treatment options would be available. Perhaps they would have had a discussion with a palliative medicine consultant to review their options. There needs to be time for a patient to really reflect on all this new information. If the patient does want to explore assisted dying, there will also be all the conversations about drugs and their impact, which we will come to when we discuss later clauses.

Amendment 317 to clause 13 seeks to increase the reflection period from 14 days to 28 days. I gently suggest that we should have the reflection period before the decision, whether it be by the judge or a panel, to give people the right amount of time to consider; currently, the reflection period is afterwards. This is such a monumental decision that people should be able to contemplate all other options available. As it is, the process is rushed, and a patient could be caught up in the moment of concentrating on getting through the stages. I appreciate that others have suggested that once we have got past that stage, with the paperwork and all those things out of the way, then there is time to reflect. During the process, however, the patient has not had time to consider the options in making their decision. I am not convinced that there is enough reflection during, as opposed to after, the process.

Amendment 314 seeks to increase the reflection period from 48 hours to seven days for patients who have been given a month to live. In that case, seven days is quite adequate time to reflect on the information they have received to make informed choices. If this is about autonomy, which my hon. Friend the Member for Spen Valley has talked about many a time, it is important for people to have choices. To have that autonomy is surely to have the options in front of us and be able to consider them in detail.

In considering whether to sit on this Bill Committee, I slept on the decision. I can usually make instantaneous decisions, but knowing the amount of work, knowing that I was new to the subject, and knowing the things that I knew then—not the things that I know now—it was a big decision for me. I was even thinking about how I would manage the workload. We are talking about something that is not at all comparable. We are talking about somebody who will be taking a decision to potentially exercise the right—if the Bill becomes law—to an assisted death. That is really important for me.

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendments made: 195, in clause 8, page 4, line 40, leave out “statement” and insert “report”.

This amendment is consequential on Amendment 420.

Amendment 421, in clause 8, page 5, line 4, leave out subsection (5) and insert—

“(5) After carrying out the second assessment, the independent doctor must—

(a) make a report about the assessment (which must meet the requirements of regulations under subsection (5A)), and

(b) give a copy of the report to—

(i) the person who was assessed,

(ii) the coordinating doctor,

(iii) if neither the independent doctor nor the coordinating doctor is a practitioner with the person’s GP practice, a registered medical practitioner with that practice, and

(iv) any other person specified in regulations made by the Secretary of State.

(5A) The Secretary of State must by regulations make provision about the content and form of the report.

(5B) The regulations must provide that the report must—

(a) contain a statement indicating whether the independent doctor is satisfied as to all of the matters mentioned in subsection (2)(a) to (e);

subsection (2)(a)

(b) contain an explanation of why the independent doctor is, or (as the case may be) is not, so satisfied;

(c) contain a statement indicating whether the independent doctor is satisfied as to the following—

(i) that a record of the preliminary discussion has been included in the person’s medical records;

(ii) that the person signed the first declaration;

(iii) that the making of the first declaration has been recorded in the person’s medical records;

(iv) that the first declaration has not been cancelled;

(d) be signed and dated by the independent doctor.”—(Kim Leadbeater.)

This amendment provides that the independent doctor must make a report about the second assessment, and makes provision about the report.

--- Later in debate ---

[Stephen Kinnock]

Amendment 348 seeks to add an additional requirement to clause 8(5). This would mean that, where the independent doctor is satisfied that the requirements under clause 8(2) have been met, they must

“inform the person’s usual or treating doctor and, where relevant, the doctor who referred the person to the independent doctor, of the outcome of the assessment.”

Some elements of amendment 348 duplicate requirements that already appear in the Bill, such as the requirement in clause 8(5)(b) for the doctor to inform the co-ordinating doctor of the outcome, including providing a copy of the statement.

The amendment would also overlap with the requirements in clause 16 for the co-ordinating doctor to make entries in the person’s medical record that must include the original statement or declaration. Where the co-ordinating doctor is not with the person’s GP practice, they must also give notice to a registered medical practitioner with the person’s GP practice of the outcome of the assessments.

Amendment 303 seeks to prevent a person from seeking multiple second assessments from different independent doctors. It places a requirement on the independent doctor to confirm

“that no other practitioner has undertaken a second assessment for the same person.”

This amendment creates the risk of a medical practitioner inadvertently committing an offence if there is no centralised record-keeping. It may also have the impact of preventing the person seeking assistance from obtaining a second opinion, as provided for in clause 10. Under the amendment, as drafted, it is unclear how this is intended to interact with the possibility of an independent doctor’s becoming unable or unwilling to continue to act as the independent doctor following the second assessment, when an alternative independent doctor may therefore be required.

On amendment 458, as the Bill stands, clause 10 provides that if, following the second assessment, the independent doctor refuses to make the statement confirming that they are satisfied that matters in clause 8(2)(a) to (e) are met, the co-ordinating doctor may refer the person to a different registered medical practitioner who meets the requirements of clause 8(6), and is able and willing to carry out an assessment mentioning clause 8(2). The effect of the amendment is to restrict the circumstances in which the co-ordinating doctor can make a referral under clause 10(1) to a different registered medical practitioner to only when there has been a material change of circumstances. It is not clear from the amendment who is required to establish that there has been a material change in circumstances and/or how that will be proved. That may cause some uncertainty for the co-ordinating doctor.

I now turn to amendment 459. Clause 10 provides that if, following the second assessment, the independent doctor refuses to make the statement that they are satisfied that the person meets the criteria in clause 8(2)(a) to 8(2)(e) when conducting the second assessment, the co-ordinating doctor may, if requested to do so by the person who made the first declaration, refer that person to a different registered medical practitioner who meets the requirements of clause 8(6) and is able and willing to carry out an assessment of the kind mentioned in clause 8(2).

The effect of the amendment is that, where such a referral is made to the registered medical practitioner under clause 10(1), the co-ordinating doctor is required to provide them with the report by the independent doctor setting out their reasons for refusal. If the new registered medical practitioner reaches a different conclusion from the original independent doctor, they must produce a report setting out why they disagree. The two reports must be made available to any subsequent decision maker under the Bill, and to the commissioner. This additional requirement for reports on the reasons for refusal or differences in opinion may make the process of seeking assistance longer and add to capacity demands on co-ordinating and independent doctors.

Turning to amendment 460, clause 10(3) provides that if, following the second assessment, the independent doctor refuses to make the statement mentioned in clause 8(5), the co-ordinating doctor may make one referral for a second opinion. The effect of the amendment is to remove the word “particular” from clause 10(3), which says that only one second opinion may be sought

“In consequence of a particular first declaration made by a person.”

The amendment is unclear and could have several possible effects in practice. For example, it could have the effect of limiting the circumstances in which a referral can be made under clause 10(1) to the first time a person makes a first declaration.

I hope that these observations were helpful to the Committee.

[Kim Leadbeater]

I associate myself with the Minister’s comments regarding the other amendments in the group; however, I listened carefully to the debate on amendment 459 and the points made by the hon. Member for Richmond Park, my hon. Friend the Member for Stroud and the Minister. My view on that amendment has changed: I do think independence is really important in the doctor’s opinions during the normal process that the Bill sets out. However, it is a really fair point to make that if the independent doctor refuses the patient, there needs to be transparency about that, and it is important that everybody involved in the process can see how that decision has been made. That is a really valid point. It is a good example of how this Bill Committee is operating, and should be operating, in that we have been listening to different views and opinions.

I take on board the Minister’s point on capacity. We need to be aware of that. We will hopefully debate the third layer later today. That layer may be a panel of experts who are there to oversee the full picture of the patient journey. For them to see what has happened with the doctors that they have interacted with is very important. Therefore, I am minded to support amendment 459.

[Danny Kruger]

I want to respond to a point made by the hon. Member for Stroud. It is relevant to the whole debate about whether we are talking about a medical treatment at all. He made the point, in respect of the question of a second or subsequent referral to an independent doctor, that it is appropriate in medicine to have second opinions; he said that that is normal in medicine, and he is absolutely right. Indeed, there is nothing to stop a patient seeking a third, fourth or any number of opinions if they want to do that and can get a doctor to consider them. The fact is that what we are discussing here is not a medical diagnosis—that is not what is being asked for when someone goes to see the second doctor, or indeed the first. What they are asking for is permission to proceed with the process.

--- Later in debate ---

[The Chair]

I am satisfied that the items contained within the clause have been adequately debate. I do not therefore propose to permit a clause stand part debate.

Clause 8, as amended, ordered to stand part of the Bill.

Clause 9

Doctors’ assessments: further provision

[Kim Leadbeater]

I beg to move amendment 201, in clause 9, page 5, line 36, leave out “and their medical records” and insert

“, examine such of their medical records as appear to the assessing doctor to be relevant,”.

This amendment provides that the duty on an assessing doctor to examine a person’s medical records is limited to records appearing to the doctor to be relevant.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 422, in clause 9, page 5, line 36, after “records” insert

“make such enquiries of professionals who are providing or have recently provided health or social care to the person as the assessing doctor considers appropriate,”.

This amendment requires an assessing doctor to make such enquiries of professionals who are providing, or have recently provided, health or social care to the person as the assessing doctor considers appropriate.

Amendment 468, in clause 9, page 5, line 37, at end insert—

“(aa) ask the person why they are seeking an assisted death.”

Amendment 423, in clause 9, page 6, line 20, at end insert—

“(2A) To inform their assessment, the assessing doctor must—

(a) consider whether they should consult a health professional or social care professional with qualifications in, or experience of, a matter relevant to the person being assessed;

(b) consult such a professional if they consider that there is a need to do so.

(2B) Where an assessing doctor consults a professional under subsection (2A)(b), the assessing doctor must give a written record of the consultation to the other assessing doctor.”

This amendment requires the assessing doctor to consider whether they should consult specialist health or social care professionals, and to consult them if they consider there is a need to do so. A record of any consultation must be shared with the other assessing doctor.

[Kim Leadbeater]

Amendment 201 provides that the duty on an assessing doctor to examine a person’s medical records is limited to records appearing to the doctor to be relevant, which makes sense. Amendment 422 requires an assessing doctor to make such inquiries of professionals who are providing, or have recently provided, health or social care to the person as the assessing doctor considers appropriate. Amendment 423 requires the assessing doctor to consider whether they should consult health or social care professionals, and to consult them if they consider there is a need to do so. A record of any consultation must be shared with the other assessing doctor.

The amendments seek to emphasise the importance of taking a holistic and multidisciplinary approach to the assessments by both doctors. The Bill as drafted provides that the assessing doctor must

“make such other enquiries as the assessing doctor considers appropriate”

when making the first and second assessments. With the amendments, I have sought to strengthen that language, by being much more explicit and making specific reference to consulting health and social care professionals. I have done so in response to the evidence we have received from professionals such as nurses and social workers, who often spend a significant amount of time with terminally ill adults.

It is clearly right that the assessing doctors should have access to all relevant details of a person’s medical records. If the records show that the person has recently been receiving health or social care, that may impact their application, so the doctors have to consult the providers of that care. As is the case at all stages in the process, records should be kept of any and all such discussions, and reports should be shared where appropriate.

Taken together, the amendments would ensure that the doctors’ assessments are thorough and comprehensive, and have taken into consideration the views and opinions of any wider health and social care team that may be working with a patient.

[Danny Kruger]

I will speak briefly to each of the amendments in this group. I will allow my hon. Friend the Member for Reigate to speak to the amendment in her name, but I state clearly that I very much support it. In my view, it is very important that the doctor asks the simple question of the patient, “Why do you want an assisted death?” The question is not being asked at the moment.

I respect the points that the hon. Member for Spen Valley has just made about amendment 201, and that the amendment may be intended to focus assessments on the information that is relevant. Nevertheless, it would introduce subjectivity into what is deemed relevant, and by narrowing the scope of the review of patient records, it could unintentionally allow for incomplete assessments, thereby undermining the safeguards that we all want to see. The risk is that potentially crucial medical history, including past mental health concerns, poor coercion indicators or undisclosed diagnoses, might be overlooked.

I call the Committee’s attention to the evidence from the British Geriatrics Society, which raised concerns that the definition of terminal illness in the Bill is often vague and risks misclassification, especially for older patients. Limiting the review of medical records could exacerbate that issue, as doctors may not have a full picture of the patient’s long-term prognosis and their mental health history. The General Medical Council has called for strong regulatory oversight to ensure that eligibility assessments are thorough.

Allowing doctors to determine which records are relevant, without standardised criteria for that judgment in the Bill, risks inconsistency and potential misdiagnosis. The criteria should include diagnosis and prognosis, treatment history, consultation, second opinions and mental health history. Consideration should also be given to disclosures of domestic violence and abuse, or patterns in medical records that might indicate domestic abuse without explicit disclosure, such as frequent visits for unexplained pain, chronic pain complaints, mental health concerns such as anxiety and depression, inconsistent explanations for injuries, and multiple visits to different healthcare providers. All of that should be properly considered by the assessing doctor.

I draw the Committee’s attention to the fact that in the Netherlands, 1% to 2% of assessments annually—a significant number when we consider the volumes we are talking about—are deemed “not careful” under the law. Other countries do not have adequate ability to look into the data, but that is significant, and it is often due to inadequate consultation or documentation. I also draw attention to the fact that in our country, I am afraid to say, the cause of death listed by doctors is too frequently inaccurate. Analysis of postmortems suggests that one in 20 deaths have been wrongly recorded. Clearly, mistakes are made in medical records, and therefore it is particularly appropriate to require doctors to give complete consideration to the full medical history of the patient.

I recognise very much that we are trying to create a Bill that works in practice; nevertheless, I think we can emphasise streamlining and efficiency at the expense of patient safety, and we are doing that here. If we tell doctors that they are only required to sift through records that appear relevant to them—a quick skim of recent notes, a glance at the obvious items in a medical history—that may sound efficient, streamlined and practical, but it is likely to leave the vulnerable exposed, in particular when social workers and psychiatrists are not involved at this early stage, as they plainly should be. No multidisciplinary team is looking at the patient at this stage.

--- Later in debate ---

[Danny Kruger]

I will come on to that. I agree with him: amendment 422 is a very helpful amendment, and I support that. It is a very good suggestion that wider consultation should be made, and it is a point that we have been trying to make with amendments throughout. I recognise that that would enhance the safeguards in the Bill—I am grateful to the hon. Gentleman.

Amendment 422 seeks to introduce an additional requirement that the assessing doctor must consider whether to consult health or social care practitioners who are providing, or have recently provided, care to the patient. The amendment is presented as addressing previously expressed concerns, but I regret to say that I feel it is excessively weak. It is a positive step in recognising the issue, but it does not ensure a broader and more informed assessment of a patient’s condition and external influences.

Patients with terminal illnesses often receive care from palliative care teams, social workers or community nurses who might have crucial insights into their wellbeing and the potential external pressures on them. The British Psychological Society has highlighted that mental health and social pressures are often overlooked in assisted dying requests in other countries. Social workers and allied health professionals play a key role in assessing whether a patient feels pressurised due to financial, social or familial burdens. As I have repeatedly said and we will debate further in due course, in my view it is very important that that assessment comes earlier in the process.

We have evidence from doctors—I will not cite it at length—pointing out that independent doctors who refuse assisted dying requests are often ignored, and patients are simply referred to another doctor willing to approve the request, as we have discussed. Consultation with health and social care professionals could act as an additional safeguard against that practice. Although the amendment introduces an obligation to consult other professionals, it leaves it to the discretion of the assessing doctor. It relies on the doctor’s subjective judgment

“if they consider that there is a need”.

I think that is too weak for assisted dying, where consistency is so critical. One doctor might consult a palliative care specialist to explore pain relief options, while another might not, assuming that they understand the patient’s suffering sufficiently. The variability in the Bill—this discretion—undermines fairness and safeguarding.

There is also a lack of accountability in what is a very sensitive process. There is no requirement to document the consideration process, which weakens oversight in a context where errors could be fatal. I respect the point made by my right hon. Friend the Member for North West Hampshire that we must not police conversations and that being prescriptive may encourage a tick-box approach. I am afraid that we risk that tick-box approach if this amendment is all that we do on this subject. We can imagine a scenario in which a doctor simply makes a note in the record with little underpinning substance.

There is also no obligation to act on the specialist input, so the duty ends at the consultation. There is no requirement to integrate the findings of the additional input that the doctor has received, which is a glaring flaw in what is an irreversible procedure that is being authorised. Finally, there is insufficient rigour for the ethical stakes. This discretionary duty is too weak to catch the difficult cases.

[Kim Leadbeater]

On the hon. Member’s point about recording those consultations, amendment 423 states in its proposed new subsection (2B):

“Where an assessing doctor consults a professional…the assessing doctor must give a written record of the consultation to the other assessing doctor.”So the consultation is recorded.

[Danny Kruger]

The hon. Lady is absolutely right, and that is very welcome. My concern is that there is no obligation to do anything about it. There is no obligation for the doctor to integrate the conclusions of the additional professionals that they have consulted into their treatment. I recognise that that provision is valuable and I welcome the amendments, but I suggest that they do not go far enough.

Let me use a hypothetical example to bring my point home to the Committee. Imagine a woman with terminal lung cancer asking to end her life. Her assessing doctor considers consulting a palliative care specialist for symptom control or a social worker to check on her home life, but decides, “My notes are enough. There’s no need for that.” What if the patient’s pain could be eased with a new approach that the doctor does not know about? What if her family’s pushing her to spare them the burden of her care goes unnoticed without a social worker’s input? The lady might die needlessly or be denied treatment unfairly.

The discretionary duty that the amendment would introduce essentially collapses because it does not force the broader scrutiny that patients deserve. The amendment sees the problem, but it is too feeble: it is too discretionary, too vague and too unenforceable for a choice as profound as assisted dying. While I will support it, I do not think it goes far enough.

Amendment 423 builds on amendment 422 by requiring that if the assessing doctor consults a specialist, a written record of that consultation must be shared, as the hon. Member for Spen Valley just mentioned. It is critical for transparency, consistency and accountability in decision making. In high-stakes cases, such as assisted dying requests, paper trails matter. Without a formal record, one assessing doctor might dismiss concerns raised by another professional without accountability—a point made by the hon. Member for Richmond Park.

As I pointed out in an intervention on the hon. Member for Richmond Park, it is remarkable how few jurisdictions around the world have such safeguards. The American model in Oregon, Washington and California does not track how many doctors a patient consults before finding one willing to approve an assisted dying request, so we do not know the extent of doctor shopping abroad. Canada’s system does not require refusals to be formally documented, making it difficult to assess the patterns of approval. Ensuring that records are available to both assessing doctors would add an extra layer of scrutiny and help to prevent doctor shopping.

However, while the amendment is a step in the right direction, it does not require an independent review of the records. Sir James Munby, the former president of the family division of the High Court, has criticised the lack of procedural rigour in oversight mechanisms, warning that assisted dying laws risk becoming a rubber-stamp exercise if refusals and approvals are not documented with transparency. The Royal College of General Practitioners has called for independent oversight of the entire process, not just a reliance on individual doctors. These amendments would partially address that, but would not fully resolve it.

Amendments 422 and 423 are welcome but otiose: they would simply give doctors permission to do what they should be doing anyway. If they are conscientious, they will do it anyway, and if not, they will not. It is slightly like an illegal gun amnesty: the good guys will not have illegal firearms in the first place, and the bad guys with guns are not going to hand them in voluntarily. I fear that we are requiring good behaviour of good people, and not requiring it of doctors who are not doing their job properly.