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

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Department: Department of Health and Social Care
Danny Kruger Portrait Danny Kruger (East Wiltshire) (Con)
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It is a pleasure to serve under your chairmanship once again, Sir Roger. I am looking forward to this week’s debating.

I want to draw the Committee’s attention to further evidence that has come in since the debate got under way. Since we started the Committee, we have had more than 400 pieces of evidence, so I apologise for not having got to this earlier, but it is relevant. I do not want people who have submitted evidence to us to feel that their submissions have fallen into a black hole and are not being considered, and I think this is significant evidence. We are talking about the necessity of a proper period of reflection, which is acknowledged in the Bill—it is understood that it is inappropriate for people to be able to request and receive an assisted death in very short order. The debate is about the extent of that reflection period. I am supporting amendments that suggest that we need slightly longer in some cases.

I want to refer to two pieces of the evidence that has come in. One is from six palliative care doctors who wrote that

“our experience is that many patients experience a period of adjustment to ‘bad news’ and may say that they cannot live under these conditions. However, after a period of reflection and adjustment, the majority come to find peace and value in their altered life circumstance, in a way they would not have believed possible. This may often take many weeks and sometimes short months. It is our profound concern that the two ‘periods of reflection’…would not allow time for this adjustment. This is even more so the case where these periods of reflection are reduced for patients predicted to have an even shorter prognosis. It is thus a reality that patients and their families may miss out on a period of life they would have valued by seeking to end their lives prematurely, and these days, weeks and perhaps even months will never be regained.”

The other piece of evidence is from Tom Pembroke and Clea Atkinson, who are experts in hepatology and palliative care in Cardiff. They raised the problems of the seven-day reflection period where there is alcohol misuse. I do not think this topic came up in last week’s debate, but it is worth acknowledging because liver disease is the most common cause of death for people in middle age. It is also worth noting that liver disease disproportionately affects the people who are most disadvantaged in our society. These experts say:

“Prognostication in advanced liver disease is challenging as management of the underlying causes, including abstinence from alcohol, potentially reverses advanced liver failure…The neurocognitive and depressive effects of alcohol misuse disorder frequently requires more than seven days to resolve following abstinence. Advanced liver disease frequently manifests with hepatic encephalopathy which can affect the ability to make informed decisions.”

Their concern is that

“A seven-day review period is not sufficient to ensure that there is an enduring wish to die which is not influenced by alcohol misuse.”

Considering the prevalence of alcohol misuse in our society, the extent to which so many people tragically die of it and the difficulties in prognostication, I suggest to the Committee that there is a particular argument to be made for extending that short period at the end for the expedited process that is being considered. I beg the Committee to consider accepting the amendment.

Stephen Kinnock Portrait The Minister for Care (Stephen Kinnock)
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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 Portrait Kim Leadbeater (Spen Valley) (Lab)
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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.

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Lewis Atkinson Portrait Lewis Atkinson
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Yes, I do. I recognise the importance of independent assessment for prognosis and capacity. However, particularly with the issue of coercion, healthcare is a team sport, as anyone who has worked in healthcare knows. The more information and the more viewpoints we can get in those instances, the better. One of the strengths of the Bill is the team sense around it, which we will further in the amendments to clause 12 that we will come on to in due course.

I will finish briefly on amendment 460. I do not see the loophole that has been described. I think we would all want someone to be able to cancel their first declaration, and they are more likely to do so if they feel they have the option of going back and making a future first declaration. My worry with amendment 460 is that, by removing the word “particular”, it suggests that people are only able to make one first declaration in the course of their life. With the periods of reflection built into the Bill, which Members spoke about earlier, if someone changes their mind, they should cancel their first declaration. They are absolutely free to do so and the Bill, as currently drafted, makes good provision for that. To me, amendment 460 would remove the ability for that person to come back to that decision at a later point and go through the assessment process again. While I understand the motivations behind amendment 460, I am cautious about it for those reasons.

Stephen Kinnock Portrait Stephen Kinnock
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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 Portrait Kim Leadbeater
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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.

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Naz Shah Portrait Naz Shah
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The hon. Member for East Wiltshire makes an important point. Where are the opportunities? When doctors are doing the assessment.

The other issue that speaks to me is the question of internalised bias. We will have professionals with subconscious bias or affirmed bias. They will be clinicians who have chosen or agreed to take part in the process; fundamentally, the majority of clinicians will not take part in this process because of their beliefs. It changes the relationship between doctor and patient from a societal perspective.

I know that a number of times I have been stopped during a process and asked a different question, and at times that opportunity for reflection—even without the pressure of knowing I have only six months to live—is of benefit to me. I am sure that others would benefit from it, too, particularly because the decision is so momentous. For that reason, I will certainly support amendment 468.

I thank my hon. Friend the Member for Spen Valley for tabling amendment 201. I have mixed views on it. I appreciate what my hon. Friend the Member for Luton South and South Bedfordshire said about medical records, especially when it comes to women and their past, but I also appreciated what my hon. Friend the Member for Ashford said about his experience from a mental health perspective.

I am still thinking about the amendment and I am not sure whether I will support it or not, but further thought needs to be given to the subject. There are the issues of mental health and women’s rights, but another issue applies, too. If someone has experienced trauma in childhood but that trauma has come out much more recently, even though it does not necessarily affect the decision at hand—whether to choose an assisted death—is there some kind of historical post-traumatic stress disorder that would then need to be explored? I do not have the answer, but I look forward to hearing the comments of my hon. Friend the Member for Spen Valley on that point. I would value hearing whether she has thought about that and what her understanding of it is.

Stephen Kinnock Portrait Stephen Kinnock
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As I have mentioned before, the Government have worked closely with my hon. Friend the Member for Spen Valley on some mutually agreed amendments, including amendments 201, 422 and 433. The amendments that the Government support aim to ensure the legal robustness and operability of the legislation, should it pass, and I will offer a technical explanation for them.

Amendment 201 will clarify the wording in clause 9 on the doctor’s assessment. It provides that the duty on an assessing doctor to examine a person’s medical records applies only to records that appear relevant to the doctor. The effect of the amendment is to make clear as part of the assessment process that the assessing doctor is required only to review medical records that are considered by the doctor to be relevant to the person’s request to seek an assisted death.

Amendment 422 would add an additional requirement on an assessing doctor to make inquiries of professionals who are providing or who have recently provided health or social care to the person and make such other inquiries as the assessing doctor considers appropriate. This applies to—

None Portrait The Chair
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Order.