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NHS: End-of-life Care

Volume 824: debated on Thursday 8 September 2022


Asked by

To ask Her Majesty’s Government what assessment they have made of the provision of end-of-life care by the NHS, particularly in respect of Archie Battersbee.

The Government are committed to providing high-quality end-of-life care, working closely with the NHS and other stakeholders. The Government are commissioning an independent review into the causes of disputes between those with parental responsibility and those responsible for the care or medical treatment of critically ill children such as Archie Battersbee. The requirement was specified in Section 177 of the Health and Care Act 2022 to lay a report before Parliament by 1 October 2023.

I thank the Minister for his Answer and for our meeting earlier this week. I stress that what I am looking for is a review, not an inquiry. We are not trying to pin blame and I hope that the review will have a wide range of disciplines and not be dominated by doctors and lawyers. Because although they say they acted in the best interests of the child—I am prepared to agree that—the parental grief will last for the next 50 years, for the rest of their lives, and we need to get this right. I hope the Minister will be able to reassure me that this will be a wide-ranging review that will involve all the disciplines involved in care.

I return the favour by thanking my noble friend for the meeting, but also for the frequent conversations we have had about mediation, for example. I know my noble friend is a qualified and experienced mediator. We are quite clear that the review has to attach no blame. We want to hear from as many people as possible. It will investigate the causes of disagreements in the cases of critically ill children between providers of care and persons with parental responsibility. It will look at whether and how these disagreements can be avoided, how we can sensitively handle their resolution, provide strong evidence and inform future recommendations to support end-of-life healthcare environments in the NHS. As much as possible, it will promote collaborative relationships between families, carers and healthcare. We can see it from both sides: as a parent, just put yourself in the shoes of someone who has to make these difficult decisions. Sometimes they feel that the medical profession acts like God; on the other side, there are medical professionals who believe that the parents do not really understand all the details. Let us make sure that we get this right.

My Lords, I too thank the Minister for having met me earlier in the week to discuss this issue. When parents receive devastating news, they are in such a state of shock that communication with them, however sensitively undertaken, risks being misunderstood. Parents are unaware of the limitations on their ability to request interventions or transfer for their child, unlike when the child is at home. So will the Minister confirm that the review will take direct, in-person evidence from parents who have been in this terrible situation and who wish to contribute from their experience—not to apportion blame, but to improve care for others?

I thank the noble Baroness, Lady Finlay, for the conversations we have had since the passage of the Health and Care Bill. My officials have been incredibly appreciative of her bringing her expertise to this field and, in fact, for educating them—and me—on some of the sensitive issues that people have to deal with in these environments. We want the review to be as wide as possible; we do not want to cut it off; probably the only thing we want to avoid is blame. We want to do this in a sensitive way; we want to hear from the families; we want to make sure it is a balanced review, and we hope to take evidence for the review from as many people as have a view on this. That is why we are taking our time; we have to publish it by 1 October 2023.

My Lords, as a family judge I tried a very considerable number of end-of-life cases, in relation to both children and vulnerable adults, so I hope this review will take into account that when the parents and the medical profession are locked in disagreement, there is a way out, where the judge who tries the case actually looks exclusively at the best interests of the child—taking into account, of course, what the parents think and what the doctors and the nurses think. It is crucial to have that ability to go to a family judge, who will deal with these cases sympathetically but firmly.

The noble and learned Baroness makes an incredibly important point about getting this right and getting the right balance. We know how difficult and sensitive these cases are when they have come to court. One issue that has been discussed by a number of parties is mediation: can we avoid it going to court in the first place, but also at what stage should mediation take place? It should not just be offered right at the end when everything has ended. We must make sure we really hear the voices of professionals as well as those affected, and families, to get the right balance. So far, we have relied heavily on the courts for some of these cases, sadly, but we just want to make sure we get this right.

My Lords, over the last six years, the provision of palliative care for children and young people has become very patchy. CCGs across England have been closing down palliative care for children. Are the Government taking action to hold integrated care boards to account publicly on implementing their duty to commission palliative care for children and young people?

The noble Baroness will be aware that earlier in the week, when we had the debate on integrated care boards and their responsibilities, we added—thanks to the work, once again, of the noble Baroness, Lady Finlay—palliative care services to the list of services that integrated care boards must commission. Integrated care boards will be accountable to NHS England, but also the CQC will be doing a lot of evaluation and they will be measured against the list of services that they have to commission. Clearly, there will have to be accountability on palliative care services.

My Lords, when a child is at the end of their life, quality palliative care should ensure, of course, both the child’s comfort and managing pain and symptoms, but also provide support and care for the entire family. These are clearly heartbreaking situations for everybody involved, so will the Minister assure your Lordships’ House that the review will take account of the support that is given to the whole staff team, including ancillary workers? They, of course, have a key role to play.

One thing that often happens at reviews is that we realise how complicated these issues are. One often cannot pinpoint one key issue, or one silver bullet, as it were. Therefore, quite often—and I was on a call on a different issue yesterday—we thought we had to tackle certain issues but realised there were wider systemic issues. Clearly, that is going to be the case here. NHS England’s palliative and end-of-life care programme is an all-age programme, but there are specific pieces of work focused on children and young people. We have also been working very sympathetically with charities such as Together for Short Lives. It has been commissioned to produce written guidance to provide ICBs and ICSs more detail, as the noble Baroness asked for, but also to make sure we make it a better environment and learn.

My Lords, in my conversation with the family of Charlie Gard, they were emphatic that adding to the tragedy of the loss of a child, the thing they found hardest was having to go to court and go through an adversarial system. Anything the review can do to prevent the necessity of court action, notwithstanding wonderful judges such as my noble and learned friend, would be welcomed by such families.

I think many noble Lords will echo the sentiments of the noble Lord on that. That is why we want the review to be as wide-ranging as possible. People have suggested mediation, but should that be mandated or voluntary? There is also a difference between commercial mediation and family mediation. Commercial mediation is usually binding, whereas family mediation is not always binding. A further question is: at what stage do we offer mediation? One thing we are being told is not to offer it when everything else has failed: we should offer it as soon as possible, to encourage a collaborative approach.

My Lords, clearly it is important that the professionals are involved in this review, but I think it is also important—as this review begins and my noble friend considers the terms of reference—that emphasis really is given to families, because these tragic cases are symptomatic of a wider problem that a lot of people face when they engage with officialdom and professionals, which is feeling that they are not being taken seriously. It is even more acute when the situation is the one that these families find themselves in, when they are parents and have important status as parents, and the issue at hand is the life and death of their own child. My noble friend has been very good at reassuring this House, but I ask if he could just give greater emphasis again to the importance of the families in this review.

Once again, I thank my noble friend for joining the meeting this week on this issue. It is quite clear that we want to hear from all voices. We encouraged the families to come forward. We have heard a number of cases, including some raised by noble Lords personally, who have been in contact with the families, and raised their concerns. Quite often they felt that their voices were not heard and they did not really understand the issues; they were in a very emotionally difficult time to take some of those issues in and understand the choices that were available. Sometimes they felt rushed into it by medical professionals. I think sometimes medical professionals have to show a bit of humility and not act like God.