Access to Palliative Care and Treatment of Children Bill [HL] — House of Lords, 2020-02-07
Topic: Health
Ann Butler-Sloss (Crossbench, Unknown): 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.