Access to Palliative Care and Treatment of Children Bill [HL]

Baroness Butler-Sloss Excerpts

2nd reading & 2nd reading (Hansard): House of Lords & 2nd reading (Hansard)
Friday 7th February 2020 Lords Chamber

[Baroness Butler-Sloss (CB)]

My Lords, I declare an interest as a vice-president of Hospiscare Exeter, mid and east Devon, which works successfully to keep terminally ill people at home, usually to the last week—often, they die at home. We are appealing for money to make this a 24-hour service; currently, it is daily and we hope to do it overnight. The ideal situation for our hospice is where most people die at home.

The hospice work is wonderful. I strongly support the Bill put forward by the noble Baroness, Lady Finlay, except in one matter to which I shall come in a moment. This Bill has absolutely nothing to do with assisted suicide, despite the powerful speech of the noble Baroness, Lady Meacher, supported by the noble Lord, Lord Berkeley. I put it on record yet again that I do not agree with either of them, and I strongly support the way in which the noble Baroness, Lady Finlay, puts this matter forward. I belong to her cohort—I ought to say that because I do not think that the issue of assisted suicide is helpful in our discussions on this Bill.

I entirely support Clause 1 but I am concerned about Clause 2 and an issue that has not been raised, which I shall explain in a moment. Despite what the noble Lord, Lord Berkeley, has just said, mediation is an excellent idea. It works in family matters. These cases come before the family courts. I cannot see why we cannot try mediation. The Government might put a little money forward for a pilot scheme, as the noble Lord, Lord Hunt of Kings Heath, has recommended. I support what he said about that.

As a family judge and then President of the Family Division, I tried numerous, probably several hundred, cases in the years that I sat as a family judge. Those cases were sensitive and often tragic—in the two about which we have heard today, my heart goes out to the families concerned; I have to say to them that I lost a son aged 50 last year and, although he was adult, it was as painful as if he had been a child. For a son or daughter to be cut off as a baby or a young child must be absolutely appalling, and I really feel for them. But it is important when looking at this Bill to remember that the Children Act 1989 makes it the job of the judge trying a child case to regard the welfare and best interests of the child as paramount.

I recognise the trauma for families of going to the court and, I have to say, the great distress of many doctors who are faced with parents with whom they cannot agree. If it is necessary to go to the court, there is a problem for me with Clause 2(4), which says that “the court shall assume”—not the medical profession—

“unless the contrary is clearly established, that any medical treatment proposals put forward by any person holding parental responsibility for the child are in the child’s best interests.”

If I were sitting as a judge, I would feel that that constrained me from the utmost flexibility that I would need in deciding what, in my judgment, the best interests of the child were. That is what really worries me about this clause. I understand the motivation, but I wonder whether the noble Baroness, Lady Finlay, has really put her mind to how a judge would try such a case. “Clearly established” is a higher standard of proof than the first-past-the-post, more than 50%. It is not as high as a criminal requirement, but it would require a standard that would lead me, if I were sitting as a judge, to wonder whether I had the power to say that I did not really think that the parents had got it right.

It is very important to remember, as the noble Baroness, Lady Meacher, was telling us, that some parents are desperate to keep alive their seriously ill child with the most appalling birth injuries or distortions—we have some like that; the doctors here will know what I am talking about. I have had endless cases of children with absolutely no chance of living beyond two whom the parents wished to keep, and the older children were left at home with somebody while the parents sat at the beside until the child died. These are very sad cases but if they have absolutely no chance of survival, it may be that the doctors have got it right, and that is where the judge has to come in. That would not be the point at which I would want parents to put forward a medical treatment proposal. If it is an individual matter, one would hope it would be cleared by mediation, but I am very concerned about cases where the court has to make the decision.

One also has to bear in mind that it is not just about the parents. There are teenage children with extraordinarily serious medical problems who ought to be heard. They are not covered in Clause 2(4). We really must bear in mind that children—including young children—are people, not packages, as I said when I did the Cleveland child abuse inquiry. They really have to be consulted, particularly if the parents’ proposal would put them through a great deal of pain and discomfort, in order to reach a stage where a successful outcome may be less than 50% likely. I have had teenage children say, “I don’t want it; let me die in peace”, but the parents say, “No, no, you must keep the child alive”. This is a problem on which the judge must decide, and Clause 2(4) must not inhibit their exercising their discretion as to what is in the best interests of the child as they see it. That is what worries me about this clause.

I would be very interested in discussing the amendment of the noble Baroness, Lady Jolly, with her. I am not sure I agree with it, but I did not really have the chance to consider it properly. At the moment, I have to say, I would like to see Clause 2(4) deleted in its entirety. Maybe before Committee, we can consider something that does not impede the absolute discretion of the judge to make what he or she thinks is the right decision. With that one reservation, I strongly support the Bill and hope that it goes forward.

--- Later in debate ---

[Baroness Blackwood of North Oxford]

It has been seen that this duty would contradict the other legislation, as it stands, where it allows for autonomy for the CCGs. We have already expressed that we are happy to discuss this further with the noble Baroness, Lady Finlay, to explain it. On the question regarding prescription medications, I was going on to explain—

[Baroness Butler-Sloss]

I am sorry to interrupt the Minister but, following on from an earlier question, would it be possible to have a more wide-ranging discussion and invite other people to attend, so that the NHS team, plus the Minister and the Department for Health and Social Care, could meet them to discuss this? Currently, I think the Government have got it wrong.

[Baroness Blackwood of North Oxford]

Given that this discussion would be with the lead Minister for Social Care and the lawyers, I am very happy to make that commitment on their behalf. I am sure that we could drill down into the legal detail of exactly where the conflict occurs to understand that issue. Perhaps I might go on to explain some of the reasons why we think that some of the provisions have been overtaken in trying to improve palliative care, subsequent to the previous presentation of the Bill. That may be reassuring as well and might help in the debate. Would that be helpful? I will also explain the concerns on the requirement around prescriptions; that was my intent in progressing.

The issue around this representing an expansion of CCGs’ liability for the cost of medicines is that it would encompass the medicines needs of all privately funded hospice residents as well. As it is written, there is a concern. It arguably gives special treatment to one group of privately funded health service users over everybody else with some form of privately funded healthcare. This would require CCGs to fund the cost of drugs, which also risks CCGs choosing to stop funding beds through contracts. If that were to be an unintended consequence, it needs to be considered carefully. I am sure that there will be further debate on this.

This Government are committed to ensuring that we improve end-of-life care and recognise many of the issues that have been raised. They published an end of life care choice commitment in 2016, which I know has been debated previously, in response to an independent review of choice, and it sets out what everyone should expect from their care and the actions taken to reduce variation, which has also been raised here. It also sought to make more personalised care a reality. Since its publication, NHS England, health system partners and stakeholders have worked through the national End of Life Care Programme Board to provide more data, more tools and more evidence, support and guidance to local areas to highlight unwarranted variation, to improve policy development and to provide better commissioning. The end-of-life care atlas of variation, published by Public Health England, highlights variation across a broad range of measures and indicators such as place of death, admissions, the proportion of patients and identification recorded on a GP register. This allows CCGs to be benchmarked across services against one another and to draw on advice, best practice and guidance to improve service quality. This is a significant improvement and promises to be helpful.

This has led to new investment to support the NHS long-term plan, with new actions to help drive further improvement in end-of-life care and support choice. They include accelerating the rollout of personal health budgets, with up to 200,000 people, including those with palliative care needs, benefiting by 2023-24 and rolling out of training to help staff identify, and provide care for, those in their last year of life. I know that the noble Baroness, Lady Thornton, wanted some numbers on that. The latest available show that more than 600 doctors are qualified in palliative medicine—this is almost 200 more since 2010; there are 1,300 nurses and health visitors working in palliative medicine, which is over 300 more since 2010, and the people plan will have a holistic approach to how we can attract clinicians of all the different levels into the harder-to-recruit areas. We have discussed that a number of times over the Dispatch Box, so I shall not go into more detail now.

A number of Peers asked about funding. We are making £4.5 billion of new investment to fund expanded community multidisciplinary teams, providing targeted support to those identified as having the greatest risks and needs. That is important because the majority of palliative care is provided in the community, as the noble Baroness will know, and it is important that we make sure that GP and community care is properly funded. On the £25 million announced by the Prime Minister in August, this was provided to CCGs in October 2019. It has already been allocated to hospices. The 2019 manifesto set out a commitment to build and provide further support for this, which I hope reassures your Lordships. The reason that the money was provided for hospices and palliative care services was that, as was rightly said, hospices do not exist in all areas, so the intention is to make sure that we can drive down variation and improve services across the system.

In addition, we are upgrading NHS support to all care home residents with the enhanced health in care homes model rolled out across the whole country over the coming decade. We are also making end-of-life care one of the new quality improvement areas for the revised GP quality and outcomes framework to support early identification and personalised care planning. I know that the noble Lord, Lord Sheikh, asked me specifically about those who wish to die at home. We know that most patients express a preference to die at home. Currently, around 47% of patients die in hospital. This has improved since 2007, when the figure was 56%, but it is important to note that there are occasions when admission to hospital may not be preventable because, as a situation progresses, some patients may want to be in hospital as death approaches because they feel safer at that point. In other cases, the family or care giver may not be able to cope at that point, but we are working hard to improve choice.

I turn to Clause 2, relating to the treatment of children, and the issues raised by the noble Baroness, Lady Finlay, my noble friend Lord Ribeiro, the noble Lord, Lord Hunt, my noble friend Lady Stroud and a number of others. The noble Baroness, Lady Finlay, has set out proposals calling for mediation in the tragic cases where there is a disagreement in the giving or withdrawing of any form of medical treatment for a child with a life-limiting illness. Decisions around withdrawal of treatment are never easy and it is difficult for any of us to imagine the pain and suffering that families in such situations go through. At the heart of each of these difficult cases, as the noble Baroness, Lady Brinton, said, is the well-being of the child. That must remain everybody’s focus. It is important that we do all we can to ensure that families and medical experts communicate and, where possible, reach agreement on the best interests of the child. My deepest sympathies are of course with any family facing such a difficult decision and trying to navigate the challenges of our healthcare system in such a distressing moment.

Mediation can and does play a vital role in facilitating better communications and creating a space where voices on both sides of a dispute can be heard in a non-adversarial way, which is of course what we all want to achieve. It is certainly important that the legal framework is considered as part of this. The evidence shows that, unfortunately, it does not provide a solution in every dispute, particularly those most serious cases where there is a breakdown in communication or trust between the clinicians in the hospital and the parents, which may lead to animosity and lengthy court battles. It is incumbent on us all to do what we can to prevent these difficult and sad cases reaching court in the first place, which is extremely distressing for all parties—we have seen those cases.

The Government are very supportive of the many excellent mediation schemes available, including those run by charities and the private sector, and we pay tribute to those who run them. We are not sure that legislation is the answer to making sure that they exist everywhere. They are thankfully rare cases, but none the less extremely tragic. We believe that the lack of statutory prescription so far means that mediation can be tailored specifically to meet the individual needs of families and their children, clinicians and hospitals, reflecting the unique circumstances of each case. We are working with NHS England and the Nuffield Council on Bioethics to look at the effectiveness of mediation and of clinical ethics committees in managing disagreements and at how this could be improved. At this time, there does not appear to be a strong call from experts in the field to make mediation or clinical ethics committees a mandatory requirement. My honourable friend the Minister of State for Care has agreed to attend the Nuffield Council on Bioethics round-table discussion on disagreements in the care of critically ill children. This will bring together high-level health policymakers aiming to agree a set of actions reflecting what NHS leaders should do and further support the creation of healthcare environments that foster good collaborative relationships between parents and healthcare staff.

We absolutely believe that healthcare professionals have a duty to act in the best interests of their patients. When doctors and families do not agree about the best interests of a child, as in the tragic cases we have seen in recent years, the courts can be asked to make an independent judgment on the best interests of the child. We are concerned about the issues raised and that legislating in the way set out in the Bill would create a presumption that, unless it is clearly established not to be the case, the views of the parents represent the child’s best interests. There may be instances where this is not necessarily the case. This would be a significant departure from the current situation, which requires the court to make no assumptions and to consider the child’s best interests with an open mind. Establishing a default presumption would override the court’s sole focus on the interests of the child.

In almost every case of dispute, families and clinicians are able to reach agreement. The rare occasions when cases end up in court are picked up and amplified by the media. They are heartbreaking, which is perhaps why they appear more common than they are. Legislating for those rare but difficult cases would not be appropriate at this time. Our efforts are best directed at ways to avoid them in the first instance. My honourable friend the Minister of State for Care would like to offer to meet the Gard family, or representatives of the Charlie Gard Foundation, to discuss how we can focus our efforts on this important area, if that would be welcomed.

To conclude, I would like to thank the noble Baroness for raising the important issues in the Bill and every noble Lord who has contributed to this significant debate. However, I must advise that the Government have expressed their reservations and will move to oppose.