Terminally Ill Adults (End of Life) Bill (Twenty First sitting)

Debate between Juliet Campbell and Neil Shastri-Hurst

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Dr Shastri-Hurst]

The hon. Member makes an important point. In practice, one would of course discuss the side-effect profile of any medication or substance to be administered. I do not feel that specifying that in the Bill, as amendment 305 is drafted, would achieve its purpose. The amendment refers to “any other effects”, but it does not specifically mention side effects. In any event, it must flow from the interaction between clause 9(2)(b)(iv) and clause 9(2)(c) that the conversation about complications as a result of the administration of a substance will encompass a conversation about side effects.

It is worth noting that all substances have a side-effect profile; what the side effects are will be specific to the substance in question. I do not think it a helpful improvement to the Bill to presuppose what the side effects may be. Amendment 305, although imperfect, is therefore preferable in my view to amendment 362, which would require that specific side effects be set out and which presupposes a scenario involving a particular set of medication.

Nevertheless, I remain concerned about the wording of amendment 305. I would be grateful if the hon. Member for Spen Valley provided some reassurances as to the steps she has taken to honour the intention of the amendment tabled by the hon. Member for York Central and achieve a tighter piece of legislative drafting.

I turn to amendment 142, tabled by the hon. Member for Broxtowe. It seeks to ensure that the discussion with the assessing doctor includes a discussion of how the substance will be administered. Although it may not be strictly necessary, because that should be a conversation that takes place when someone is going through an informed consent process, I do not consider that its inclusion would undermine the operability of the Bill. I am therefore minded to support the amendment. I do not consider that it will be restrictive should the circumstances change, because there may be a broad conversation about the variety of substances that can be administered, depending on the circumstances. As the drafting of the Bill does not preclude or prohibit such a wider discussion, it would be eminently sensible to include the route of administration.

Amendment 306, in the name of the hon. Member for York Central, would require the assessing doctor to include the escalation of medical intervention in their discussion should complications arise. In many ways, that issue is covered by clause 9(2)(c), so the amendment would not aid the operability or interpretation of the Bill. It would be much better dealt with under the code of conduct, to avoid the Bill becoming overly prescriptive and to allow flexibility as scientific and medical knowledge adjusts and adapts over time.

[Juliet Campbell (Broxtowe) (Lab)]

I will speak to amendment 142, which would insert

“and how it will be administered”

into the Bill. It would require the assessing doctor to explain and discuss with the person how the substance that might be provided to assist them to end their life will be administered.

The amendment would be a key step towards giving peace of mind to a terminally ill individual who is seeking an assisted death. It would also preserve their autonomy right up to the final stage. Ensuring that the method of administration is thoroughly explained would provide the doctors and the individual seeking an assisted death with the opportunity to consider the options—if there are options available to them—and decide which method would best preserve the autonomy of that individual.

Assisted dying presents many opportunities for individuals to be coerced, especially at the final stage—death itself. Therefore, the method of administration is key information for the individual to know, and it is not sufficient for it to be withheld from them. We must make it a prerequisite of the Bill that it is supplied. Making an informed choice about the assisted death pathway involves careful consideration, and knowing and understanding every step of the process. It is appropriate for the person to maintain their agency. Minimising the role played by the doctor at the administration stage is also key to ensure that the final act belongs to that individual.

We must acknowledge that many individuals seeking assisted death may experience significant mobility and physical limitations, particularly because of their terminal illness. Those limitations can affect their ability to engage with the process in ways other people may take for granted. For example, a patient suffering from severe weakness, paralysis or chronic pain might have difficulty physically positioning themselves or administering some types of substance, depending on the options available. A person may have difficulty swallowing and would not be able to ingest a substance in the form of a pill, but they may be able to autonomously operate a system that would allow them intravenous administration.

In these cases, the method of administration must be carefully considered and explained in a way that accommodates the patient’s unique physical needs. By discussing the challenges openly at this stage, doctors can help to ensure that the patient understands the options open to them, while making the process as comfortable and accessible as possible. Addressing their mobility and physical limitations in this context is not only a matter of practicality, but a reflection of our compassion and respect for that individual’s circumstances.

By limiting the doctor’s physical role, we also ensure that the patient retains control over the process. Making the act of self-administration as independent as possible ensures that the final part of the process gives the patient agency in choosing how and when to end their life. The individual must maintain a primary role in their death, but the actual administration is the final assurance and assertion of the individual’s choice to end their life. The amendment emphasises the importance of ensuring that, within the Bill, the doctor’s involvement is limited to preparation and support. That is key to making sure that the patient’s final moments are self-directed and as free from any unnecessary external interventions as possible.

Subsection 6 of clause 18, on the provision of assistance, discusses the role of the doctor in administration. It says that a doctor might

“assist that person to ingest or otherwise self-administer the substance.”

By ensuring that the method of administration of the substance aligns with the physical capabilities that a person has to self-ingest, which may be limited, we limit the role played by the doctor at this crucial stage, and limit the chance of the coercion of the individual or of the individual having a death that lacks real autonomy.

In conclusion, amendment 142 plays a crucial role in safeguarding the rights and autonomy of a terminally ill individual seeking an assisted death. By ensuring that the method of administration is clearly explained, we empower patients to make an informed, autonomous decision about the way in which they wish to end their life.

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

Debate between Juliet Campbell and Neil Shastri-Hurst

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Dr Shastri-Hurst]

I will try to make some progress. I want to move on to the other point I want to address, which is around bogging down the whole process with layer upon layer of bureaucracy. We are talking about a relatively small group of patients who are in the last six months of life and are then battling against the system that is meant to be helping them. If we put in layer upon layer and hurdle upon hurdle, it will become a much more difficult system for people to navigate. That does not mean that it would be a less robust system, but it would be a more difficult system. We are trying to make life easier, not harder, for those patients. This comes back to the central point that Professor Whitty made in his evidence about overcomplicating Bills: we overcomplicate Bills out of good intentions, but rarely make the safeguards more robust—in truth, we make them less safe.

[Juliet Campbell (Broxtowe) (Lab)]

Will the hon. Gentleman give way?

[Dr Shastri-Hurst]

Go on—I am feeling generous.

[Juliet Campbell]

I want to go back to the point about making the Bill more complicated by putting layer upon layer on it. My hon. Friend the Member for Bradford West spoke about health inequalities and how not everyone is given the same advice to the same level. If we were to introduce a palliative care specialist we would guarantee that everybody was given the same advice and information. We could therefore help reduce the health inequalities and inequalities of access to information that we know exist in our healthcare system.

[Dr Shastri-Hurst]

The hon. Member makes a valid point. The reality is that, regardless of specialty title, there will be individuals who are better placed to have certain conversations and discuss certain issues than others. I look back at my own clinical practice: some colleagues would have had a better bedside manner than others, for example. I do not think this comes down to the name of the specialty; it comes down to the underpinning skills and knowledge. That is the point I am trying to make.

We can get bogged down by saying, “Everybody has to see a palliative care specialist”. Of course, that is open to people: if they wish to have a referral to a palliative care specialist, they can see one. However, as the hon. Member for Stroud said, some people may not want that. We cannot be removing the autonomy of patients when their decision-making process is that they choose not to engage with that. They may want to speak to their GP because they have had a relationship with them over 30 or 40 years and have the patient-doctor relationship that is so important when dealing with these important discussions. Perhaps they would feel less comfortable having that discussion with a clinician they had just met for the very first time.

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

Debate between Juliet Campbell and Neil Shastri-Hurst

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Will the hon. Lady give way?

[Juliet Campbell]

I have almost finished, so I will carry on.

If we give doctors the essentially impossible task of proving that death will inevitability occur in six months, there is a risk of an individual being advised to stop treatment, to accelerate them artificially into a serious or terminal state or speed it up to ensure their eligibility. As medical intervention is so key in the prognosis of a seriously ill patient, it makes no sense to me to use language that is not consistent with real-life medical experiences or reasonably within the scope of medical diagnosis.

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

Debate between Juliet Campbell and Neil Shastri-Hurst

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Juliet Campbell (Broxtowe) (Lab)]

Q I have a question for James Sanderson and one for Dr Clarke. They are quite similar, but I will refer to things you have said. James, you said:

“Sadly, only half the people who need palliative care receive it.”

In your opinion, who are the people who receive palliative, and who does do not?

My question to Dr Clarke is similar. You have talked about the population being

“carved up into two groups…those who deserve to live and those are expendable”.

Could you expand on that quote and the two groups you referred to, as well as the impact that has on their treatment and care?

James Sanderson: You draw a really important point about not just the provision and totality of palliative care across the country but the inequity of access. Unfortunately, we find that the diversity of people who are accessing care in hospices across the country is less than those who are dying in hospital—43% of people currently die in hospital.

One of the things we really need to do is move to a new ecosystem of palliative care that looks at supporting people in different settings. We need specialist provision in hospices to support people with significant needs, but increasingly hospices are reaching out beyond their walls into the community, and 80% of Sue Ryder’s work is in people’s own homes. People tell us that they want to die at home, so supporting people in their own homes enables us to access more diverse communities and get to people in their own setting.

Increasingly, one of the things we feel is necessary is the provision of support inside hospital. Alongside wards, we would bring support to that 43% of people who are currently dying in hospital, to ensure there is equality of access in all places, both in in-patient settings and in the community. You draw a really important point that we have to look at the totality of provision and ensure that, when someone is offered palliative care—the Bill talks about that provision being available—there is universal access, in terms of the type of palliative care available and the access for everybody in society.

Dr Clarke: My comment refers to the fact that there is an immense gulf between the theory of the NHS being a cradle-to-grave service—or a service that cares for us at the end of life as it does at the start—and the reality. The reality that I see every day at work in my hospital is patients coming into the emergency department from the community sometimes in utter, abject misery, in agony, with a lack of dignity. They have been forgotten completely. They are not getting healthcare or social care, and no one cares about them.

Even in the hospital, patients who have a terminal diagnosis are sometimes cast out into the corners of the hospital. There are hospitals, and mine is one currently, where we do not even have a 24/7 palliative care service face to face. Every night in my hospital, and every weekend from Friday to Monday, you cannot see a palliative care nurse or doctor, despite the fact that for a number of years that has been an NHS standard. That is an absolute disgrace and it shows how little people who are dying are truly cared for in a civilised society.

It does not necessarily have anything to do with assisted dying, except that if we do not address that simultaneously, some of those people will “choose” to end their life, because we as a society do not care about them enough to give them the care that might make life worth living. Surely that is a travesty for Britain.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q I have a question for Dr Clarke and Dr Cox about the registration of deaths, which is dealt with in clause 29. Do you feel that the provisions set out in the clause are sufficient? If not, what further bolstering would provide the oversight needed to ensure that the processes and procedures are followed correctly?

Dr Cox: My understanding of the plan is that in the Bill—forgive me, but I am sketchy on this—the aim is for the registration to be as a natural death. It would not be referred to the coroner, and “assisted dying” would appear on the death certificate.

I am also a medical examiner. My concern is that, as a medical examiner, I am obliged by law to scrutinise all deaths to ensure that a referral to the coroner is not required and to identify any learnings. What concerns me in that role is whether enough recording is happening around decision making and the process to do my job properly. With my medical examiner hat on, do I know what happened? I do not see anything written down in the Bill about the records that are to be kept. What happened when the patient took the substance? What happened afterwards? Were any actions taken in the meantime? That is not so much something I have thought about a lot with my palliative care consultant hat on, but as a medical examiner it concerns me.

Dr Clarke: For the sake of time, I do not have anything to add. I completely agree with that.

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

Debate between Juliet Campbell and Neil Shastri-Hurst

Tuesday 28th January 2025 Public Bill Committees

[Juliet Campbell (Broxtowe) (Lab)]

Q I have a question for James Sanderson and one for Dr Clarke. They are quite similar, but I will refer to things you have said. James, you said:

“Sadly, only half the people who need palliative care receive it.”

In your opinion, who are the people who receive palliative, and who does do not?

My question to Dr Clarke is similar. You have talked about the population being

“carved up into two groups…those who deserve to live and those are expendable”.

Could you expand on that quote and the two groups you referred to, as well as the impact that has on their treatment and care?

James Sanderson: You draw a really important point about not just the provision and totality of palliative care across the country but the inequity of access. Unfortunately, we find that the diversity of people who are accessing care in hospices across the country is less than those who are dying in hospital—43% of people currently die in hospital.

One of the things we really need to do is move to a new ecosystem of palliative care that looks at supporting people in different settings. We need specialist provision in hospices to support people with significant needs, but increasingly hospices are reaching out beyond their walls into the community, and 80% of Sue Ryder’s work is in people’s own homes. People tell us that they want to die at home, so supporting people in their own homes enables us to access more diverse communities and get to people in their own setting.

Increasingly, one of the things we feel is necessary is the provision of support inside hospital. Alongside wards, we would bring support to that 43% of people who are currently dying in hospital, to ensure there is equality of access in all places, both in in-patient settings and in the community. You draw a really important point that we have to look at the totality of provision and ensure that, when someone is offered palliative care—the Bill talks about that provision being available—there is universal access, in terms of the type of palliative care available and the access for everybody in society.

Dr Clarke: My comment refers to the fact that there is an immense gulf between the theory of the NHS being a cradle-to-grave service—or a service that cares for us at the end of life as it does at the start—and the reality. The reality that I see every day at work in my hospital is patients coming into the emergency department from the community sometimes in utter, abject misery, in agony, with a lack of dignity. They have been forgotten completely. They are not getting healthcare or social care, and no one cares about them.

Even in the hospital, patients who have a terminal diagnosis are sometimes cast out into the corners of the hospital. There are hospitals, and mine is one currently, where we do not even have a 24/7 palliative care service face to face. Every night in my hospital, and every weekend from Friday to Monday, you cannot see a palliative care nurse or doctor, despite the fact that for a number of years that has been an NHS standard. That is an absolute disgrace and it shows how little people who are dying are truly cared for in a civilised society.

It does not necessarily have anything to do with assisted dying, except that if we do not address that simultaneously, some of those people will “choose” to end their life, because we as a society do not care about them enough to give them the care that might make life worth living. Surely that is a travesty for Britain.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q I have a question for Dr Clarke and Dr Cox about the registration of deaths, which is dealt with in clause 29. Do you feel that the provisions set out in the clause are sufficient? If not, what further bolstering would provide the oversight needed to ensure that the processes and procedures are followed correctly?

Dr Cox: My understanding of the plan is that in the Bill—forgive me, but I am sketchy on this—the aim is for the registration to be as a natural death. It would not be referred to the coroner, and “assisted dying” would appear on the death certificate.

I am also a medical examiner. My concern is that, as a medical examiner, I am obliged by law to scrutinise all deaths to ensure that a referral to the coroner is not required and to identify any learnings. What concerns me in that role is whether enough recording is happening around decision making and the process to do my job properly. With my medical examiner hat on, do I know what happened? I do not see anything written down in the Bill about the records that are to be kept. What happened when the patient took the substance? What happened afterwards? Were any actions taken in the meantime? That is not so much something I have thought about a lot with my palliative care consultant hat on, but as a medical examiner it concerns me.

Dr Clarke: For the sake of time, I do not have anything to add. I completely agree with that.