Terminally Ill Adults (End of Life) Bill (Twenty-fifth sitting) Debate

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Department: Department of Health and Social Care
Stephen Kinnock Portrait Stephen Kinnock
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The right hon. Member sets out clearly the difference between self-administration—the concept at the heart of the Bill—and the performance of the act either jointly or by the doctor. The latter is not permitted under the terms of the Bill; the former is. That is where we are.

Simon Opher Portrait Dr Simon Opher (Stroud) (Lab)
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The lack of an ability to assist in the final process would put medical professionals in a very difficult position. Would carrying the medicine to the room where the patient is count as assistance? I think we have to have assistance in the Bill, but I also feel that, as the Minister has outlined clearly, someone can help a person to self-administer but cannot administer. That is quite clear to me.

Stephen Kinnock Portrait Stephen Kinnock
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I thank my hon. Friend, who speaks with considerable clinical expertise. It is about exactly that difference between self-administration and administration. If we cleave to those two principles, that is the basis on which we will achieve the stated aim of my hon. Friend the Member for Spen Valley.

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Neil Shastri-Hurst Portrait Dr Shastri-Hurst
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My hon. Friend hits the nail on the head, because it is the patient who is driving the decision. They are making that act by activating the electronic device—the computer or whatever it may be in terms of assistive technology—but they have the power and control over that decision-making process, which is completely distinct from a clinician doing that act. It is distinct because it is activated by the patient—by the person making that decision—and that is why I draw the distinction. My hon. Friend may not agree, but that is my rationale for drawing a distinction between the two.

Simon Opher Portrait Dr Opher
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rose—

Neil Shastri-Hurst Portrait Dr Shastri-Hurst
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I am being ambushed by the left.

Simon Opher Portrait Dr Opher
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I agree with all the hon. Gentleman’s points. In terms of assistance, what we are talking about, potentially, if the technology arrives at that, is that the doctor may be able to put a Venflon into the patient’s vein, but they would not put the drug through the Venflon into the vein. That would enable the patient to have control. That is the type of assistance that could be quite useful in this scenario, but it would not involve the doctor actually delivering the drug.

Neil Shastri-Hurst Portrait Dr Shastri-Hurst
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I am grateful for that helpful and thoughtful intervention.

For the reasons I have set out, I consider that the amendments create unnecessary and highly undesirable legal confusion, so I shall not support them.

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Simon Opher Portrait Dr Opher
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Actually, if we did an autopsy on any person who has died, pulmonary oedema would almost certainly be found because that is what happens in death—the heart stops and the lungs fill with fluid. I would also like to correct the idea that there is neuromuscular paralysis with pentobarbital. There is no way that barbiturates act in that way. All they do is sedate and put the person to sleep, and death comes afterwards.

Danny Kruger Portrait Danny Kruger
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I was not suggesting that pentobarbital has a paralytic effect. Often in assisted dying, a paralytic is administered first as part of the cocktail of drugs. Subsequently, we discover that while the patient may have appeared entirely calm, sleeping peacefully, significant trauma may have been occurring beneath the surface.

I defer to the hon. Member’s knowledge, but my understanding from the scientific evidence I have read, and that medics have given to me, is that the extent to which people executed by lethal injection, by pentobarbital, have their lungs fill with fluid is peculiar—it is remarkable. They effectively drown beneath their peaceful exterior.

I intend to press amendment 464 to a vote, and I intend to support other amendments in this group. Although I support the aspiration of amendment 532 to make provision for what to do in the event of a procedure’s failure, I think it gives too much leeway to the Secretary of State, so I will oppose that amendment. I think the amendments that the hon. Member for York Central and I have tabled are preferable.

To make the obvious case for those amendments, and as I said in a previous debate, there are three choices in the event of failure. The first is to ignore the plain signs of distress, of things going wrong and of the patient suffering, which is clearly a failure of the doctor’s duty of care. The second is to expedite the death, which we have decided would be illegal under the Bill. Therefore, the only option is to revive the patient and escalate treatment, rather than actively or passively facilitate their death.

I hope Members will agree that, on the rare occasions when assisted suicide goes wrong, it is right that the patient is immediately revived and taken to hospital, or for the doctor to take whatever action is necessary. I am interested to understand why those amendments should not be supported.

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Sarah Olney Portrait Sarah Olney
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I am grateful for the hon. Gentleman’s professional experience, which is extremely helpful. He is absolutely right. Following the point made by the hon. Member for Banbury, we cannot define the circumstances in which a patient will find themselves when this is taking place. That is why it is incumbent on us to make sure we provide very clear guidance on precisely what Parliament intends.

As Dr Rebecca Jones told us in written evidence:

“As the death may take many hours, I’m uncertain of the practicalities of”

doctors remaining with the patient

“for many doctors…have competing demands on their time.”

In written evidence, Dr Chris Ainsworth asked how this will work in cases where death takes several days, as has happened in Oregon, while Dr Trevor Stammers wrote:

“If the doctor is required to be present until the patient’s death, this may require hours of practitioners’ time to fulfil and is unlikely to be adhered to in many cases if the dying process is protracted.”

Dr Rachel Fisher said in her written evidence that for Australian doctors, who are not required to be present at the final act, each assisted death requires around 60 hours of professional time. For British doctors, we will need to add the time it takes for the self-administration to result in death. Dr Fisher also raised the real impact on doctors, writing,

“imagine the practicalities of those who must deliver it. The GP, motivated by a deep desire to preserve life and relieve suffering arrives at the home of the patient with a cocktail of powerful drugs. What if the patient has symptoms? Who will collect their child from nursery or school if the patient takes a long time to die? How will they know when to decide the death was unsuccessful? Will there be counselling for GPs observing and feeling complicit in a potentially drawn out and symptomatic death?”

Finally, Dr Paul Shaw asked in his written evidence:

“How will this service be funded? What support will be required from the NHS when things go wrong or death takes longer than expected? Will this be a 0900-1700hrs service? What will be the out of hours arrangements?”

A lot of the written evidence touches on the practicalities of a doctor being required to remain with the patient until they die. Amendment 429, in the name of the hon. Member for Bexleyheath and Crayford, seeks to clarify whether “being with the patient” requires the doctor to be physically present in the room.

Simon Opher Portrait Dr Opher
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I understand that hon. Members are coming from a good place, but I do not understand how amendment 429 would stop the doctor having to stay with the patient until they die. I agree that it is an important issue, so could the hon. Lady elucidate on that?

Sarah Olney Portrait Sarah Olney
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The hon. Gentleman gives me an opportunity to conclude my remarks. I support amendment 429 because it is important to provide clarity that when we say “with the patient,” we mean in the room. However, I invite the Minister to expand further on the resource requirement of assisted dying. I want the doctor to remain with the patient, which I think is critical. That is why I support amendment 429, but the implication of the Bill is a considerable resource requirement, particularly for GPs, and I would like the Minister to respond to that.

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If England and Wales are to have assisted dying, it should not be conducted as it is in other jurisdictions. The states that currently have it gather patchy and incomplete evidence on the complications that people suffer. Let me repeat that those complications include pain, vomiting and lengthy deaths. We want to avoid people suffering those, and one way that we can do that is to gather data on how often it occurs. The amendment would do exactly that, and I hope all members of the Committee can support it.
Simon Opher Portrait Dr Opher
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I am glad to serve under your chairmanship, Sir Roger. First, I will briefly address the whole area that we are talking about. GPs who are involved in terminal care will go and see a patient as they are slowly dying; we do not know at any point what will happen, and almost anything can happen. I have sat with people who may at any point have a massive pulmonary haemorrhage and drown, for example, or they may just quietly go to sleep—or they may start vomiting.

What those of us in terminal care do is react to what is happening with the patient. For example, if they start to be sick, we would give them an anti-emetic; if they start to become very agitated we would then give them midazolam. What I am saying is that this is normal medical care. We have to be very careful not to stipulate in the Bill what is actually normal medical care.

I understand that what we are proposing is a new option that has not been there before, and we know that there are complications. But in a terminal situation, there would be no occurrence where we would call an emergency ambulance and take them to hospital, for example.

Sean Woodcock Portrait Sean Woodcock
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My hon. Friend speaks with a lot of knowledge, and every time he contributes I learn something about the medical profession. My challenge to him is that while he is right that at the end of someone’s life GPs and doctors are used to looking after somebody, and there are lots of different complications from medical treatment, in the situation we are talking about the treatment—if we can call it that—is to end their life. That is a distinct difference. Something has gone wrong if their life has not ended suddenly or peacefully, as they were hoping. That means that they might die hours or days later, potentially in agony, or they will linger on, potentially also in agony. The amendment is to try and clarify what then happens, because I would suggest that this is very different from a normal medical procedure.

Simon Opher Portrait Dr Opher
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I thank my hon. Friend for his sensitive and clear worry. But it is important to note that we would not in any circumstances try to do something that would finish someone’s life after they had been given their self-take medicine, because that is against the law. In the Bill we have made a clear distinction between the doctor—a euthanasian, if you like—taking the life, and the patient taking medicine that finishes life. What we need to do is simply support the patient. If, as my hon. Friend suggests, they are in pain we would give them a morphine drip, which is in common use in terminal care. I absolutely respect what he says, but the same treatment principles would be in place as in terminal care.

Danny Kruger Portrait Danny Kruger
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Even in terminal care, when it is understood that a patient is close to death, doctors would surely not overlook a patient for whom an assisted death is clearly failing. The hon. Gentleman suggests that it would be inappropriate to—and that he would never—call an ambulance, or send a patient to A&E; I wonder whether he also means that he would never seek to revive a patient or bring them back to life, as it were, if they were experiencing complications. To his often-repeated suggestion that there is no difference between this and normal medical treatment, there is an enormous difference. Doctors administer lethal drugs to a patient, and are then also supposed to be somehow caring for the patient in the traditional way that doctors should. These things are inherently incompatible, and there is a choice between the two : is the doctor helping the patient to die, or is he helping them to live? That questions remains, and does he not acknowledge that there will be circumstances where it would be appropriate to revive the patient, and seek to support them as if they were living?

Simon Opher Portrait Dr Opher
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I almost agreed with the hon. Gentleman earlier, when he asked at one point, should we not just leave this to doctors?

One of the key things the hon. Gentleman said is that the doctor administers the drug. This is self-administered, first of all, so that is a very clear line. However, also, in a case of terminal care—this is what I am trying to get across to the Committee—we know the patient is dying, and therefore if they are becoming worse we simply do things to make them comfortable, and we do not try to revive them, because they are dying. It is important that we realise that this is a very different medical situation from normal care, and that it actually needs very different skills as a doctor. Here, a doctor is not trying to prolong life, but trying to make a death as comfortable as possible.

That is why I support the Bill—because I think it will enhance a comfortable death. I wanted to make it clear that that is normal practice now in terminal care: we do not revive a patient with a terminal diagnosis who is in terminal care, but we make them comfortable.

Sojan Joseph Portrait Sojan Joseph
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This is a very good discussion, and with a clinician as well—maybe my hon. Friend can help here. Are we leaving the Bill to professionals to administer, who might be confused and not clear about what they should be doing? In normal current practice, when somebody has a poor prognosis and is very fragile; we use “do not resuscitate” or “do not attempt CPR” decisions. Why do we not build that into the Bill—that everyone who is going through this process should have a DNR or DNACPR in place?

Simon Opher Portrait Dr Opher
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I thank my hon. Friend for his experience in a clinical setting. I would remind everybody that in the Bill we are trying to help people die in a comfortable way, and I do not feel it is the Bill’s job to define exactly how we treat nausea or abdominal obstruction and so on. What we would like to do here is ensure that a patient has a pain-free death, and a death that they are in control of.

Simon Opher Portrait Dr Opher
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I will make a little progress and will then take my hon. Friend’s intervention.

On amendment 436, all medical practitioners are required under their code of practice to record any event they come across. I feel there should be better data and I agree with the hon. Member for East Wiltshire that we need to collect data. We are actually very good at doing that in the NHS. Under clauses 21 and 22 there are provisions for the Secretary of State to collect data on complications. I am therefore not sure that particular amendment tabled by my hon. Friend the Member for York Central is necessary. I think I have covered amendment 464, from the hon. Member for East Wiltshire.

On amendment 429, about the doctor being in the same room, I totally understand the anxieties presented by my hon. Friend the Member for Bexleyheath and Crayford, but I feel that whether the doctor is there should be the choice of the family and the patient. There may be some confusion about this, but to me, what the Bill implies—I am interested to hear the Government’s opinion—is that the doctor should deliver the medicine to the patient, check that the patient is willing to take the medicine as per amendment 462 from the hon. Member for East Wiltshire, give the medicine to the patient, and then ask the family whether they want them to be there or in the next room. They need to be available, but do they need to be in the same room? I think that should be the choice of the family.

Daniel Francis Portrait Daniel Francis
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I hear what my hon. Friend says, but the wording of clause 18(9) and (10) is ambiguous. Subsection (9) says that the co-ordinating doctor must remain with the person until “the person has died”, but subsection (10) says that the doctor

“need not be in the same room”.

I do not want to get into measuring metres, but where exactly is that place? Is it in the same room or is it in the same building? If it is in the same building, you cannot possibly be with the person until they die. Does my hon. Friend have comments on that?

Simon Opher Portrait Dr Opher
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I am interested to hear what the Government say about the wording around that amendment and whether it is safe. I would defer to the Minister on that.

Amendment 430 from my hon. Friend the Member for Bexleyheath and Crayford, about a code of practice that must address complications and failures, is quite a strong amendment and I am willing to support it. If as doctors we have a code of practice about how we handle this type of thing, the amendment would potentially help, and perhaps answer some of the questions from my hon. Friend the Member for Banbury.

I do not believe that amendment 255 from my hon. Friend the Member for Filton and Bradley Stoke is necessary. I believe it should be dealt with under clause 21.

I believe that the very well put amendments 532 and 533 from my hon. Friend the Member for Ipswich could be covered by amendment 430.

Naz Shah Portrait Naz Shah
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Will the hon. Member give way?

Simon Opher Portrait Dr Opher
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Yes. I am sorry; I was going to give way to the hon. Member for Reigate at some point too.

Naz Shah Portrait Naz Shah
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Many doctors have written in to us because they are confused by the Bill. Just as the hon. Gentleman is making his case here, there are many doctors who are writing in to us. I wondered what his response to that was, especially because he is a doctor.

Simon Opher Portrait Dr Opher
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I am in two minds about the doctor being present until the patient dies. In the circumstances, we need to encourage this to happen at home predominantly, because I think that is where most people would prefer to do this action. We perhaps need to look further at whether the doctor needs to stay, in the rare situation where the patient goes on.

Let me conclude by saying that I know that the amendments all come from a good place, and that this is an anxious time, but terminal care is an anxious time for doctors, for patients, for everyone, because we do not know exactly what is going to happen. The Bill allows someone a way of dying, when they have a terminal illness, that has a bit more exactitude than normal practice.

Jack Abbott Portrait Jack Abbott
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I fully understand and am very sympathetic to my hon. Friend’s point about the family having privacy and space in the last moments. However—this is a genuine question—what happens if things start to go wrong? Although it is uncommon, we know it is possible. Do we expect the family members who are going through the last traumatic moments to have to go out of the room to find the doctor, albeit they might just be behind the door? I do not know that that would necessarily make it less traumatic, and for some people it could make it worse if the doctor is not there and present next to their bed.

Simon Opher Portrait Dr Opher
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I think there is some truth in that, to be fair, but I believe we should leave it open to the family’s discretion, with the proviso that the doctor should be close at hand, whether that means outside the door or whatever. We need Government advice on whether amendment 429 is safe. I have nothing further to say.

Lewis Atkinson Portrait Lewis Atkinson (Sunderland Central) (Lab)
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It is a pleasure to serve under your chairship, Sir Roger. I will cover a few of the amendments, and follow on from my hon. Friend the Member for Stroud, whose points I broadly agree with.

When it comes to the location and, actually, a lot of the elements, I fear we are trying to over-specify practical matters. As in so many cases, this is not about capacity, coercion, assessment and so on; it is about the practicalities of death, and it is right that we allow the healthcare team for dying people and their families to operate with the professional skill with which they currently operate.

On amendment 429, on the doctor being in the same room, I can think of many instances in healthcare in which a healthcare professional is in an adjoining room, potentially even with a door open so there is a line of sight, and that is entirely appropriate. I think of observations, for example, in various settings. That provision is absolutely necessary and allows an appropriateness of proximity without intrusion. I am sure the doctor will be in the room at the point at which the substance is taken, but if someone then goes into unconsciousness fairly quickly, as would happen in the vast majority of cases, and then takes half an hour or so to die, it is entirely unnecessary for a doctor to be standing there in the same room, towering over the family, when they could be near at hand. I just do not think we need to specify that in the Bill.

I have some sympathy with amendments 532 and 533, tabled by my hon. Friend the Member for Ipswich, on the Secretary of State setting out regulations, but I fear the hon. Member for East Wiltshire did an excellent job of persuading me that they should not be accepted, because when a “must” is included in that way, we get into saying, “The Secretary of State must tell a doctor exactly what they must do in every situation.” The legal parameters are clearly set out in the Bill as drafted. There is no administration by a doctor on a person’s behalf; it must all be self-done. Additionally, we have not yet mentioned the existing provisions in clause 9(2)(c), which requires, at the point of assessment, a conversation between the assessing doctor and the patient about their wishes in the event of complications or any sort of delay.

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Naz Shah Portrait Naz Shah
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I absolutely agree and share those concerns. This is important. I appreciate that we have had this debate for many days now. Is this a healthcare intervention? Is it a treatment? What words should we apply? In this instance, when it comes to drugs, there are potential side effects. We have seen that they do not work everywhere and that they create complications. We have just debated whether a doctor should be in the room, outside the room or round the corner, as well as whether they should be visible or able to see what is going on. Ultimately, this is about the drugs. Having looked at the issue, I genuinely cannot imagine anything but the MHRA in this role. Are we really going to set up something completely new, outside our health service, that regulates drugs, their side effects and the potential implications?

Simon Opher Portrait Dr Opher
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The matter of unlicensed drugs sounds very alarming, but we cannot regulate a drug through the MHRA if it unlicensed, and we would be looking for therapeutic effect, which would not apply in this case. More importantly, many other regulatory bodies, like the pharmacy framework and the General Pharmaceutical Council—

None Portrait The Chair
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Order. Remember that an intervention should be a sketch, not an oil painting. It should be a question or should seek clarification; it should not be a mini-speech.

Simon Opher Portrait Dr Opher
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Does my hon. Friend accept that there are ways of regulating drugs other than through the MHRA?

Naz Shah Portrait Naz Shah
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My hon. Friend clearly speaks with expertise. There are other regulators, but the reason why I support amendment 465 is that the MHRA is an institution that we trust and that has the expertise. My understanding—my hon. Friend might be able to tell me differently—is that, of the regulators, the MHRA is the body that does the ultimate rubber-stamping and gives our country confidence in the national health service.