Terminally Ill Adults (End of Life) Bill

Lord Empey Excerpts

Friday 27th March 2026 Lords Chamber

[Lord Rook (Lab)]

My Lords, I thank the noble Baroness. Her points are a helpful segue to the amendments that I will speak to, which are very much about the first formal conversation that takes place between a medical practitioner and a patient who is interested in exploring the potential of an assisted death.

I will speak to Amendments 213 and 216 in my name. Like others, I am grateful for the work that has gone into strengthening the Bill; the decision to record the preliminary discussion is significant and important. That said, there remains, in my opinion, a serious gap. Although records must be made, at the moment the commissioner who is responsible for the oversight of this system does not have access to, or visibility of, these records. I recognise that we are close to the Recess and I do not wish to lead noble Lords’ minds astray to their Tube journey home, but my amendments are an attempt to “mind the gap” that has been created here. I hope, in fact, they go a bit further and maybe fill the gap.

By simply making available to the commissioner these written records of the preliminary discussion, oversight becomes evidence based rather than simply allowing regulators to assume the best. This preliminary discussion is the gateway moment in what will be, for some, their final journey. In that moment, a doctor has first sight of the patient’s capacity. In that consultation, the patient first hears their full range of options. In that encounter, there may be the first warning signs of other problems—for instance, evidence of coercion or distress. Because, rightly, this conversation will go on in private, the doctor’s written record is the only durable account of what is likely to be a determinative discussion. As it stands, that account is not available to the scrutinising body, which is the very mechanism charged with monitoring the system.

This raises two questions. First, I ask my noble and learned friend Lord Falconer of Thoroton: if informed consent is the ethical foundation of this legislation then how is this meaningfully verified by the commissioner if the primary record of what was explained, asked and understood is not available to them? Without that record, it will not be possible for a commissioner to verify consent; rather, they will simply take it on trust. Secondly, my question for my noble friend the Minister is: how do His Majesty’s Government expect the commissioner to investigate concerns, or ensure compliance within the safeguards of this Bill, if they are not entitled to see the contemporaneous written record of the very discussion that initiated the process?

We all agree on the need for safety, and if these services are not sufficiently regulated I fear they may not be sufficiently safe. A regulator who cannot see the record cannot regulate the system. A commissioner who can examine only summaries cannot give the system a complete bill of health. There are wider implications too. If a family raises concerns about coercion, what is the evidential basis for any investigation? If a clinician is accused of misconduct, what information do they have with which to defend themselves? If Parliament or the public wish to understand how this law is operating, where is the underlying data that can provide the detail and confidence they seek?

We have, sadly, seen what happens when regulators do not have sufficient sight of the systems they oversee. Between 2005 to 2009, there were serious failings in Stafford Hospital, including widespread patient harm and avoidable deaths. Despite the presence of multiple regulatory bodies, including the Healthcare Commission, the Mid Staffs’ problems were not identified or acted on in time. Why? It is because the regulators relied on aggregated data targets and self-reporting; lacked access to, and failed to interrogate, evidence; and did not have full visibility of serious warning signs and complaints. The lessons learned from Mid Staffs help us to think about how we might mind and fill the gap in this legislation.

Compliance without visibility is not protection, and this is precisely what we need to guard against. From a practical perspective, these amendments are straightforward. They would not impose a new burden on the doctors; the record is already required. They would ensure that the record is shared with the commissioner, who is already acting as the regulating authority. They would align responsibility with capability, visibility with compliance and safety with oversight.

In all legislation, let alone a Bill as consequential as this one, we want services that can be trusted. For that, we need systems that can be scrutinised. A regulator that cannot scrutinise the record cannot regulate the system. These simple amendments would correct that, and I commend them to the Committee.

[Lord Empey (UUP)]

My Lords, last Friday we were talking about communication difficulties, whether through hearing, language or something else. In that context, the noble Lord, Lord Rook, has done us a service by proposing his amendments to make it simple and clear. The reason why this is important is that the Bill is basically a series of stages. People at stage 2 need to know what occurred at stage 1 and so on down the line, and to be effective the oversight has to be made available.

I am not a medical person, although I have a family member who is a medical professional, but I have seen at first hand how things can change in a hospital setting where a patient may be in one condition one day and a different condition the next. That is why I think reporting and the availability of records are so important in assessing how safe the process is.

I raise this because, by definition, a person who is in hospital is probably going to be receiving medication or multiple medications, and drug-induced psychosis, delirium or hallucinatory states can happen. These are temporary and reversible conditions, but delirium is a bit like a thief in the night: it creeps up unannounced. It is there one minute and gone the next. Unless people have a consistent record of how the patient has been responding and how that patient is assessed and that record is passed down the line from one stage to another, it is going to be extremely difficult to see whether these things have been occurring. Delirium can be the reaction of an individual to various medications that they are receiving. It is a sudden and temporary state of acute confusion and altered mental function. It can develop in hours and can involve impaired attention, disorientation, hallucinations, rapid shifts between agitation and lethargy, inability to concentrate, emotional swings and distorted thinking.

The noble Baroness, Lady Grey-Thompson, said that perhaps her Amendment 214 is overprescriptive. Let us not argue about the minutiae, but the principle is that the material needs to be available not only to the professionals who are dealing with each stage. As the noble Lord, Lord Rook, has just told us, to be safe, somebody has to have oversight and the information.

Setting aside all the heavy-duty communication issues that we discussed last week, because a patient is in hospital the chances are that they are receiving significant amounts of very strong medication. I have seen with my own eyes that it can induce a situation of delirium just like that, which can then go away. It is temporary, so a person might be in one mood at the initial stage and in a different condition at the next stage. People have to see and know that, and it has to be recorded, because this is not just any old thing: this is a decision to end a life. To have some fundamental safety mechanisms, records have to be kept and they have to be shared. The noble Lord, Lord Rook, gave us an analysis of the Mid Staffs situation and, sadly, there have subsequently been others. They are not an unusual occurrence, so if there is anything we can do to alleviate or minimise that problem, let us do it. I see no reason why not.

I draw the attention of Members to the fact that these conditions occur in a hospital almost by definition, because of the patient’s receipt of very powerful medications. Therefore, we must consider the condition that a person might be in at the initial stage, bearing in mind that one of the conditions is distorted thinking. Let us make it safe, ensure that the records are kept and distributed, and ensure that those who need to see them get to see them.