Terminally Ill Adults (End of Life) Bill (Twentieth sitting) Debate
Full Debate: Read Full DebateNaz Shah
Main Page: Naz Shah (Labour - Bradford West)Department Debates - View all Naz Shah's debates with the Department of Health and Social Care
(1 day, 20 hours ago)
Public Bill CommitteesI 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.
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.
I beg to move amendment 348, in clause 8, page 5, line 10, at end insert—
“(c) 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.”
This amendment would ensure that the independent doctor communicates the outcome of their assessment to the referring doctor as well as the usual or treating doctor.
The hon. Lady is absolutely right. We will address in later debates the point that insufficient attention will be given to the reasons why an application has been refused. If an application has been refused on the grounds of coercion, a future doctor will not necessarily know that that was the reason. As the hon. Lady says, in cases of coercive control there is a very real danger that if a person has been unduly influenced to seek an assisted death and the doctor declines their application, possibly because they detected coercive control, the patient can then be coerced, or influenced, into starting again with a new doctor. There is nothing to stop that in the Bill. We have a real problem, and I hope the Committee will consider the amendments.
I support amendments 422, 468 and 423, which I think would strengthen and safeguard the Bill. However, as someone who worked in mental health for many years, I have grave concerns about amendment 201, which would restrict access to medical records. Health professionals work in environments with great confidentiality of records; I have no concern about health professionals or doctors having access to health records. Some Committee members have talked about doctors not needing to know whether a person had tonsillitis, but most medical records or GP summaries will note whether someone has had tonsillitis, along with details about vaccinations and infections. I do not think that those records will necessarily be relevant or that a doctor would look in detail at what medication they have had in that respect.
What is relevant, however, are records for people who have a mental health disorder or are vulnerable. For example, people with serious mental illnesses such as chronic treatment-resistant schizophrenia may be on treatments such as clozapine that, if stopped, will have an impact on their mental health. The treatment that they may undergo during terminal illness may have an interaction, and medication that they have been using for many years to treat their mental health condition may have to be stopped. Doctors need to know why the person wanted to choose that route, and whether it will have an impact on their mental health.
Restricting access to important medical records by the doctor who makes the decision will have an impact on very vulnerable people. As we have discussed before, people may be homeless or may not have any family members, and it will all have an impact on why they decide to seek the assisted dying route. People may feel that they are a burden to society and the system. If there is any documentation from six months or a year ago, it will be relevant for the doctor. Removing access to medical records for doctors will have an impact on people with mental disorders, intellectual disabilities and neurodevelopmental conditions, so I oppose amendment 201, although I support the other amendments.
I will try to keep my remarks brief. I first speak to amendment 468, tabled by the hon. Member for Reigate, on the asking of the question why someone wants to have an assisted death. When I originally came to this debate, Dermot, a humanist who was also my election agent—a lovely guy—came to me and said, “Now that this Bill is going through Parliament, will you support it”? I said, “Explain it to me.” He never once mentioned the word “autonomy”. If I remember correctly, what he talked about was suffering, pain and horrible deaths, which many hon. Members have referred to. We have heard lots of examples during this Bill Committee.
My hon. Friend the Member for Luton South and South Bedfordshire said that the decision was none of a doctor’s business and that the issue was about autonomy. However, if a woman was being coerced into an assisted death, the idea that it was none of the doctor’s business would not quite wash with me. We talk about autonomy, but if someone does not have autonomy in their lives—if they are in an abusive relationship, are a victim of coercion or have a vulnerability—they might not have the choice.
When we ask a question, it is often about something else. I have experienced this myself. I am very passionate; when I am talking about things, somebody might just stop me and say, “Naz—what’s this actually about?” That is all it takes to make me stop, take a step back and a breather, and think for a deeper minute about whether the issue could actually be about something else. We do not always stop to think.
The amendment is good practice; I do not in any way deny that. The hon. Member for Reigate is obviously coming from a really good place. However, the amendment is almost like specifying that when someone goes to see a doctor, the doctor has to say, “How can I help? What is wrong?” It is just unnecessary; that is my only feeling about it. If someone came in and said, “I would like to request an assisted death”, the doctor would not just say, “Okay”—they would ask how the patient was feeling. It is normal medical practice to ask what is going on in someone’s mind, so that does not need to be specified in the Bill.
I thank my hon. Friend for his intervention. There is a medical model and a social model of intervention. If I walk into a GP surgery with a really bad headache, I am prescribed paracetamol. If the headache gets worse, I am prescribed something stronger—maybe co-codamol or codeine. Doctors are really busy. We have had to add another 40,000 appointments just for people to get through systems, so we know how hard it is to get a GP appointment.
If the person who turns up at the GP’s with a headache is usually quite healthy, the doctor might not take a minute to ask about what has actually happened. If I say, “I have a headache because I am banging my head against the wall—I have that much stress”, that is a whole different conversation. Having that conversation with the patient—probing a little more—is, for me, very important from a holistic point of view.
I want to check that my hon. Friend was not implying that I had not thought deeply—for more than a minute–in the course of making my comments earlier.
I am grateful to my hon. Friend for reiterating those points. Does she accept that it is a patient’s right to say, “It’s none of your business” in the course of the conversation?
I absolutely accept that it is the patient’s right to say, “It’s none of your business”, with the really clear caveat that they could well be a vulnerable patient. They might say that it was none of the doctor’s business, and that doctor might then not be able to explore the other things going on with that patient. That is why, for me, this does not wash.
The point that I am trying to make is that, in the course of a normal consultation, it is presumed that every doctor will know their patient and be able to have these conversations. In most cases, they probably will because we have amazing doctors; I have amazing relationships with my doctors. But does that mean that the doctors will ask that one question: “Why?” That is the crux of the whole Bill.
The right to say, “It’s none of your business” might be fine when no one else is involved, but if someone seeks an assisted death, that involves multiple members of NHS staff. There is an impact on all those people, who need to be comfortable with what they are doing. Maybe the person needs to accept that they do need to provide some information so that the medical staff feel comfortable about the question of eligibility.
That opens up a whole different debate for me. Some clinicians will not sign up to this process and some will. That is a whole different debate, but I take the point that there has to be a reason.
We talk about the option for referral to palliative care. I have previously moved amendments that would have meant a referral, without the option; however, when considering that option, a doctor needs to understand that if a patient says, “I do not have to explain myself—full stop”, or, “I do not want to talk about palliative care”, that should raise alarm bells. If a doctor says, “You’ve got this terminal illness. These are the options—let me spell them out for you. You have the option of referral to palliative care and the option of these drugs, so why do you want to kill yourself?”, and the patient turns around and says, “It’s none of your business”—
The Bill already sets out a number of things that a doctor has to assure themselves of, with regard to coercion and capacity. They would do that having had a significant amount of training to establish, in the round, after consulting others, that one way or another the legal requirements have been met. The “Why?” question appears to me to bring in a judgmental element—
Indeed: subjective, as the right hon. Gentleman said. That is the point that I am trying to get at. There is an objective assessment, which is wholly appropriate, but a subjective assessment would lead down a different route and muddy the objective assessment.
I absolutely see where my hon. Friend is coming from and appreciate her concern, but we will have to agree to disagree as we have a difference of opinion. A subjective assessment might reveal that something else is going on for that patient.
I hate to put myself in this position, but imagine I have just received a diagnosis and I am going to die within six months. I could have a whole load of anger about that happening to me and I could say, “I don’t want this. I don’t want to talk about it. It’s none of your business. I’m angry—this is what I want.” At that point, does the doctor stop? In most cases, my hon. Friend the Member for Luton South and South Bedfordshire is absolutely right, but in some cases she might not be. I might want to shut the conversation down because I am angry or because other things are going on in my head and I do not want to explain. Amendment 468 would allow the doctor, from a compassionate point of view, to have another conversation with the patient.
Does my hon. Friend agree that she is making a powerful case against amendment 468? A multitude of conversations and different circumstances will need to be taken into account; it is wholly inappropriate to have a mandated question in primary legislation. We should go back to clause 1, which I think the Bill is actually about. It states that the person must have
“a clear, settled and informed wish to end their own life”.
Does my hon. Friend agree that that is what is at the heart of the Bill, rather than decisions about what is in the person’s best interests?
I respectfully disagree. I am making the case that there is a conversation to be had. Yes, there is informed choice but is my hon. Friend suggesting that the question should not be asked at all? I take the point that with an informed choice there would have been an exploratory conversation, but sometimes just calling something out, or stating the obvious, makes a huge difference.
I wish to clarify that the amendment is about not an additional assessment but merely a simple question. Like many who have spoken, I hope that most good doctors would ask the question anyway and take the answer. It may inform them or it may not but sometimes, as the hon. Member for Bradford West has just discussed so powerfully, it is helpful to remind medical staff, who are under lots of time pressure, that sometimes it is worth stepping back and asking why.
I appreciate that my hon. Friend has given way a number of times, but I gently suggest that we already know the crux of the Bill and what we are debating. The “why” is that people with a terminal diagnosis, with six months to live, would like a course of action to end their lives in a pain-free way and to have the autonomy to do so.
We are in danger of over-legislating for a range of different permutations that could potentially happen in conversations. I agree that these kinds of questions are absolutely crucial, but it may satisfy my hon. Friend that amendment 21, to which we agreed a few moments ago, requires medical practitioners to take training on
“domestic abuse, including coercive control and financial abuse”.
That sort of protection and safeguard has already been agreed to.
We will rely on highly specialised individuals to pick up on these issues. They may want to explore, through further questioning, why people are making these decisions but we cannot legislate for all the different sorts of conversations, and all the emotions that may be going through people’s minds. If someone comes back and says, as my hon. Friend put it, “Well, it’s none of your business,” or whatever the answer may be, we will rely on the specialised professionals to pick up on danger signs. However, that would not necessarily lead them in every single conversation to have a suspicion of the patient’s motives. Life and conversation do not work like that and we cannot legislate in that way.
I absolutely agree that life does not work like that. Life is very complicated and that is why I want the conversation to happen. My hon. Friend referred to amendment 21, which we have just agreed to. I spoke extensively about why that is a brilliant amendment that moves us towards much more safeguarding, but I also think that it does not go far enough for women, marginalised communities and people from ethnic minority backgrounds. I genuinely do not feel that amendment 468 is about over-legislating. It is just stating an obvious fact: sometimes, even in normal life, we go around the houses to get to a conversation and get to the right point. That is what I want to get to.
To follow up on the example my hon. Friend gave earlier, if—to be glib—someone said, “None of your business”, she would want the doctor to keep probing. At what point does that end? If someone genuinely does not want to have that conversation and says, “I want to end my life because I have a terminal diagnosis. I live in fear of the pain that could await me and I don’t really want to go into much detail,” where does that end? Where does that conversation continue to?
I completely agree with the hon. Lady’s point. The conversation goes on in the way the doctor would want it to, but they have at least asked the question. Is it not very simple? The Bill already requires doctors to look for signs of external coercion. As we have acknowledged, there is no way to determine internal coercion—the influence people have on themselves. There is no way in the Bill at the moment to identify whether somebody feels that they want an assisted death because they fear that they are a burden to others. This question is the only opportunity we have to tease out that answer: does she agree?
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.
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—