Baroness Murphy
Main Page: Baroness Murphy (Crossbench - Life peer)(1 day, 8 hours ago)
Lords ChamberI just want to comment on some of these earlier amendments, particularly from the noble Lord, Lord Shinkwin. I think the noble Baroness, Lady Finlay—I cannot remember whether it was last week or the week before that—reminded us that people who are terminally ill, or who have discovered that they are very ill and likely to die, have a range of things they want to talk about. Whether they could opt out in some way will almost always go through their head at some stage. Whether it is legal or illegal, that is the way it is, and they will often want to discuss that. But that is not quite what the preliminary discussion for the purposes of the Bill is. It is a rather more formal preliminary discussion, which must cover a number of things—I think there are half a dozen in the Bill. That is not quite the same as the very early recording being proposed for any old discussion that takes place.
Of course, multiple things get covered between a doctor and a nurse, between the nurse and the patient, and between the patient and his doctor about what they are feeling and what they want. However, when it comes to something that is considered sincerely held, it is at that point that the preliminary legal discussion comes in as the first discussion to record.
A lot of these discussions will be recorded in the medical notes. My experience of reading many medical notes is that they do not cover what you would like them to, but on this occasion they often will. Nevertheless, it is not quite the same as what is proposed in the Bill. I urge people to concentrate on what is recorded in the Bill as having to be recorded for that preliminary discussion, because that covers a huge amount more than is being proposed in some of these amendments.
In light of the fact that the noble Baroness said this would be a formal discussion, does she agree that if we are sticking with the principle of choice, autonomy and accurate information, it becomes even more important that the patient is given, as fast as possible, a comprehensive copy of that discussion, and that it is not just left filed in a medical record but should be given to the patient for them to look at and reflect on?
I do not know what the noble Baroness’s discussions with her patients are like, but I remember mine very well. A lot of discussion that goes on between a doctor and a patient does not get formally recorded but is part of the everyday conversation of a consultation. I think we must recognise that we need, as the noble Baroness, Lady Fraser, urged us this morning, to get back to the realistic issues about what patients want and what they talk about.
It is important that we remember what the Bill is about. It is about trying to do something with what we have in normal day-to-day medical practice. It is not about imposing something else on what is ordinary day-to-day practice until such time as people have expressed—probably repeatedly—a settled wish to go down this route and they are terminally ill. Then the proper discussion kicks in and they need all that information. How much of it is provided to them in written form and how much orally is a judgment between the doctor, the nurse and the multidisciplinary medical team looking after them.
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.