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

Debate between Jack Abbott and Neil Shastri-Hurst

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Dr Shastri-Hurst]

My hon. Friend makes a valid point—the Committee can see that I was an orthopaedic surgeon, not an endocrinologist. It is not necessarily a progressive condition; it is a condition that can be managed and maintained. It does not fall within the wording of the Bill. We are not talking about a condition that is inevitably progressive, and for which there is no treatment option available to pause, reverse or prevent its progression. We are talking about a relatively limited group of conditions that will inevitably lead to death when someone, for want of a less blunt phrase, has reached the end of the road in terms of their therapeutic treatment options.

[Jack Abbott (Ipswich) (Lab/Co-op)]

rose—

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

Debate between Jack Abbott and Neil Shastri-Hurst

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Jack Abbott]

Q Professor Preston, you have extensive research into palliative and end-of-life care. It would be really helpful for the Committee if you could describe some of the underlying motivations about why people come to the decisions they do when choosing end-of-life care, and how you feel assisted dying would sit as an available option for those making those decisions, if it was available.

Professor Preston: The decision to go into palliative care is often made more by a clinical team, recommending that there be changes in the goals of care and what we are to aiming do. There are two big European studies looking at that at the moment, in chronic obstructive pulmonary disease and cancer. It is about trying to get triggers so that those changes in care can happen, because people cannot make decisions unless they are informed and they are aware.

Equally, when it comes to assisted dying, we have done interviews with bereaved families and healthcare workers in the United States, the Netherlands and Switzerland, and also with British families who access assisted dying through Dignitas. We hear from the family members that it is something they have really thought about for a long time. It might come to a crunch point where they know they are potentially going to lose capacity, they are potentially going to lose the abilities that are important to them—although for someone else, losing them may not be an issue.

That is when people start to seek help. They usually first seek help from one or two family members. There is often secrecy around that, because you do not want everyone talking about it. It is quite exhausting to talk about. It is a decision you have made. Then they seek help from healthcare professionals, and that is where they get a varied response depending on who they access. It is a bit of a lottery, because it only a minority of doctors will be willing to do this. That is where the challenge comes in.

[Dr Shastri-Hurst]

Q Professor Preston, in your written submission, you effectively propose reversing the presumption of capacity that is set out in the Mental Capacity Act. Could you go into a little more detail about that and the reasons behind that proposal?

Professor Preston: The submission was with my colleague, Professor Suzanne Ost, who is a professor of law, and that very much came from Suzanne.

I think the aim is to have that bit of extra concern, so that we do not presume capacity, but instead almost presume that there is not capacity. It would be a bit like if you go to A&E with a child and they have a fracture. The presumption there is to ask, “How did this happen?” and “Do we need to rule anything out?”, rather than just assuming “Well, they have just fallen over” and that things are exactly as said. There is an element of that, where we are not presuming capacity, but are actually going into it and switching it around within the training to ask, “Do they have capacity?”. I think that would be a change within the Mental Capacity Act.

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

Debate between Jack Abbott and Neil Shastri-Hurst

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Dr Shastri-Hurst]

Q Has the GMC undertaken a legal assessment of the openness to legal challenge around that Montgomery point—if those conversations were not initiated and patients say that they were not given all the options available to them?

Mark Swindells: We have not done a forensic legal assessment of that nature, but obviously Montgomery is in case law, and Parliament has the power to set primary law. I listened to what the chief medical officer said and what Dr Green says about how restrictive or otherwise that might be in terms of the doctor’s role with the patient.

[Jack Abbott]

Q This might sound like playing devil’s advocate, and I fully appreciate that you do not want to reduce this to a tick-box exercise, as you described it. Some might argue that the risk of what you describe is that it creates a lottery, because you would be relying on doctors to use their personal judgment as to when to have that conversation. For example, if a patient and doctor do not have a particularly close or long-standing relationship, the doctor may not know what the signs are, so the patient, who may need to have that conversation, may never have it. The risk is that you would be reliant on good relationships forming over time and doctors using their intuition, so that some patients will have the conversations they need but others will not.

Dr Green: Obviously, it would be great if we worked in a system where doctors had all the time they needed to deal with their patients. I believe that the Bill mentions a duty to provide information from the chief medical officer, and having read the Bill, to me it seems very much like this might be in the form of a website or leaflet. We believe that it is important that patients should be able to access personalised information, and we would like to see an official information service that patients could go to, either as a self-referral or as a recommendation from their GPs or other doctors. That would give them information not just about assisted dying, but about all the other things that bother people at this stage of their life, and it would mention social services support and palliative care. It could be like a navigation service as much as an information service. That might address some of your concerns.

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

Debate between Jack Abbott and Neil Shastri-Hurst

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[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.

[Jack Abbott (Ipswich) (Lab/Co-op)]

Q Dr Cox, may I follow up on one of the things you said earlier? Forgive me if I have misunderstood; I want to be clear. Earlier, I think you said that in the countries that do not have assisted dying, the state of palliative care has improved more quickly than in countries that do. Is that a fair representation of what you said?

Dr Cox: In European countries and American states.