Health and Care Bill — House of Lords, 2022-03-16
Topic: Health
Ilora Gillian Finlay (Crossbench, Unknown): My Lords, we now come to the very real problem that relates to the power differential between a doctor and the parents of a sick child. I am most grateful to all who have met me and discussed the amendment, particularly some senior paediatricians and the charity Together for Short Lives, and for support from the Charlie Gard Foundation in redrafting this amendment. The amendment has been carefully redrafted in the light of comments made on the earlier version. Everyone I have spoken to has recognised that problems sometimes arise. In its 2018-19 review, the Nuffield Council on Bioethics observed common themes behind disagreements —communication issues, differing perspectives on what kind of risks could justifiably be taken, feelings of powerlessness for both parents and staff, and delays in seeking resolution interventions. Among the recommendations is mandatory communications training, as in proposed new subsection (2)(a) in the amendment, and the timely use of effective resolution interventions such as mediation, as in proposed new subsection (2)(e). When parents, as most do, have looked up their child’s condition on the internet, they often come across suggested treatments on different websites or by talking to medical contacts that they have. Clinicians can feel threatened by that When parents are worried, they can come across as angry or difficult in their attempt to get information or get something done. All too often, they are labelled as overanxious. Yet, is it normal to be out of your mind with worry if your child, whom you adore, looks as if they might die This amendment tries to provide a route for everyone to communicate better, and for the temperature to be lowered. It applies where there is a difference of opinion between the parents and the responsible doctor when a child is thought to be nearing the end of life. When staff become aware of a difference of opinion, the clinicians need to listen to the parents, and others concerned with the child’s welfare, who may have important information to inform thinking. Parents who want to seek a second opinion want to know the results of tests, such as radiology, for example, and, at the moment, they must go through a complex and sometimes slow process to access the information. Sadly, some parents only find out what was in the clinical record after their child has died. Of course, if there is any suspicion of child abuse, subsection (2)(b) would not apply, as it would be outwith the "reasonable steps" criterion Where another clinician from a reputable centre is suggesting a treatment, they should be asked to explain it, and the evidence base behind the suggestion, to avoid distortion of messaging—hence, subsection (2)(d) of the amendment. Clinicians, in explaining why they oppose a proposal, need to be able to explain to the parents what the "significant harm" in the proposal is. When taking any clinical decision, harms and burdens are weighed up against potential benefit. If a child is going to be taken into care, the test is whether it is of "significant harm" to leave the child where they are, rather than be taken into care. In some ways, this is similar, because the clinicians are being asked to show that it is significantly harmful for the child to pursue the parents’ proposal, rather than continuing with the current management plan—when it often involves withdrawing treatment and is likely to lead to death Some hospitals have excellent ethics committees to involve early. The Nuffield Council report recognises that there are very real difficulties in the concept of best interest when deciding not to treat, as it is often not clear to the parents why abandoning the hope of improvement is in the interests of the child. In an overcrowded NHS, unconscious bias can skew towards wanting a service to clear beds, when prognosis looks poor. However, parents know that the child has no interests once they are dead. Nuffield recommends that the views of parents should be accorded considerable weight in decisions about their child When the two parties are unable to resolve their difference of opinion, such a case would now go to the court immediately. This amendment suggests that a "mediation process, acceptable to both parties" should be allowed when, and only when, earlier attempts at resolution have failed, as in subsection (2)(e). A mediation process would be between the parents and the senior doctor with overall clinical responsibility. It cannot be delegated to a junior in training or to one of the nurses on the ward. If mediation fails, then, as now, the case would proceed to court. The amendment is clear that no doctor or institution would be required to provide a treatment which they do not feel comfortable giving. This is the current law. The amendment is also clear that the overriding principle is the principle, as laid out in current law, of the "best interests of the child" being paramount. If the child is Gillick-competent, such an amendment would not apply Similarly, the views of others, such as a social worker or health visitor who knows the family may provide important information. As is the case now, that information must be listened to, as it may relate to some safeguarding issues or other information unknown to either the clinical team or the court. The early steps outlined in this amendment should improve the quality of communication between parents and the medical team, thereby decreasing the need to go to mediation. The mediation process is to try to decrease the number of cases going to court. I beg to move.