Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 2 & Report stage
Wednesday 16th March 2022 Lords Chamber

Moved by

[Baroness Finlay of Llandaff]

172: After Clause 164, insert the following new Clause—
“Dispute resolution in children’s palliative care
(1) This section applies where there is a difference of opinion between a parent of a child with a life-limiting illness and a doctor responsible for the child’s treatment about—(a) the nature (or extent) of specialist palliative care that should be made available for the child, or(b) the extent to which palliative care provided to the child should be accompanied by one or more disease-modifying treatments.(2) Where the authorities responsible for a health service hospital become aware of the difference of opinion they must take all reasonable steps—(a) to ensure that the views of the parent, and of anyone else concerned with the welfare of the child, are listened to and taken into account;(b) to make available to the parent any medical data relating to the child reasonably required to obtain evidence to inform the parent’s proposals for the child’s treatment (including obtaining an additional medical opinion);(c) to allow the provider of an alternative treatment that is being advocated by the parent to provide evidence, in person or remotely, to the mediation process and subsequently to the court;(d) to demonstrate the reasons that significant harm would be likely to be caused by the proposed treatment; and(e) where the two parties are unable to resolve their difference of opinion, to allow for a mediation process, acceptable to both parties, between the parent and the senior doctor with overall clinical responsibility.(3) Nothing in subsection (2) requires, or may be relied upon so as to require, the provision of any specific treatment by a doctor or institution, and in particular nothing in subsection (2)—(a) requires the provision of resources for any particular course of treatment; or(b) requires a doctor to provide treatment that the doctor considers likely to be futile or harmful, or otherwise not in the best interests of the child.(4) In this section—“child” means an individual under the age of 18;“health service hospital” has the meaning given by section 275 of the National Health Service Act 2006 (interpretation);“parent” means a person with parental responsibility for a child within the meaning of the Children Act 1989.(5) Nothing in this section affects—(a) the principle of the best interests of the child,(b) the law about the appropriate clinical practice to be followed as to—(i) having regard to the child’s own views, where they can be expressed; and(ii) having regard to the views of anyone interested in the welfare of the child, whether or not a person concerned with the welfare of the child within the meaning of this section.”Member’s explanatory statement
This amendment aims to ensure that disputes between parents and doctors will be able to engage effective mediation.

[Baroness Finlay of Llandaff (CB)]

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.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite the noble Baroness to speak.

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[Earl Howe (Con)]

My Lords, I first thank the noble Baroness, Lady Finlay, for having brought forward this important issue for debate and for introducing it in her characteristically informed and professional way. I assure her that I understand the issues she has highlighted and why she has done so. There is no doubt in my mind that the kinds of case that she has cited are extremely distressing and stressful for all involved, and can, on occasions, be contentious.

The Government agree that mediation is often a good route to take when there is such contention. Parents and clinicians should have access to high-quality, independent mediation schemes where they wish to do so. There are many mediation schemes available and we are very supportive of them.

The NHS already ensures access to mediation in many cases, and we strongly encourage it to continue doing so. But, at the same time, we need to ensure that those schemes are effective in the different contexts in which they are needed. Currently, organisations have the flexibility to offer mediation services earlier in a dispute or to prevent such disputes arising. They have the flexibility to tailor services specifically to the unique circumstances in which they are needed.

I hope the noble Baroness would agree that each case is unique. It is essential that everyone is able to have their voice heard, that there is a good understanding of different perspectives and that there is appropriate involvement of parents in decisions about the care and treatment of their child. Naturally, in that process, differences of opinion can and do arise.

The key to progress in this area is something deeply nuanced—human relationships. That is why I believe that, rather than legislation, our efforts are better directed at working together to develop systemwide solutions about how disagreements can be avoided or recognised early and, most importantly, sensitively managed. We need to ensure that in these difficult situations NHS trusts and staff are well equipped, well prepared and well supported to make that sure parents’ feelings and concerns are fully considered and supported, and that the relationship remains positive and constructive. We know that there are already examples of best practice and guidance but we need to do more.

To improve the outcomes of these difficult cases, we need to look at the whole process. We need to look at how best practice can be shared across the system to ensure that parents’ voices are heard throughout the process, not just in mediation, and how we can prevent disputes arising in the first place. In the rare cases when a dispute does arise, we need to focus on the quality of mediation schemes and not just prescribe that mediation is offered by default.

To look at how best we can embed best practice, training and advice on shared decision-making and dispute resolution across the system, the Minister for Patient Safety and Primary Care has agreed to chair a round-table event facilitated by the Nuffield Council on Bioethics. This will build on the work already being done by bringing together key stakeholders to agree actions that support the creation of healthcare environments that foster good, collaborative relationships between parents and healthcare staff. I have also offered to meet Connie Yates and Chris Gard to hear their experiences and discuss how we can support better collaborative relationships between parents and healthcare staff. I hope this demonstrates that the Government understand the importance of this issue and that we are committed to addressing it.

It is the Government’s view—I say this with some regret—that putting this amendment or another in the Bill will not help improve the outcomes of the very difficult, rare situations in which an unresolvable dispute arises. This is because efforts need to be focused on a holistic approach to dispute resolution to improve the process as a whole. Merely allowing for mediation to be available at the end of a dispute will not do this; either party could refuse it and allowing mediation will not, we think, drive the careful, sympathetic and considered work with parents and carers that this topic so urgently demands.

I recognise that these are difficult matters, but I think progress will best be made through practical, down-to-earth work across the system and by bringing in a wide range of perspectives. This is what I am now offering and I therefore hope that, in reflecting on that offer, the noble Baroness, Lady Finlay, will feel able to withdraw this amendment.

[Baroness Finlay of Llandaff (CB)]

I am most grateful to everyone who has spoken. I realise that the time is late so I will try to be very brief in responding. I appreciate the offer of Nuffield to host another round-table event. I believe it held one recently and it had its previous inquiry. The sad reality, however, is that over recent decades of trying to teach communication skills, things have not improved as much as they should. One of the reasons is high staff turnover, which means you educate one group and it moves on. Yes, things have to be sensitively managed, but the role models come from the seniors. We are not talking about the vast majority, who are doing really well. The problem is that the people who are not doing well are the very ones who do not take up the education and do not want to change. I believe we have now got to the point where we need to send a very clear message and put this in the Bill. I beg leave to test the opinion of the House.

--- Later in debate ---

[Lord Bethell (Con)]

My Lords, I am grateful to the noble Lord, Lord Alton. I join him and the right reverend Prelate the Bishop of Durham in paying tribute to my noble friend Lady Sugg for her work on women’s issues—work that I support in every way I possibly can. I think that this amendment is a useful amendment to this Bill. My noble friend Lady Sugg is right that the world is changing: science raced ahead during the pandemic, and many things that had not been tried before were tried. Clinical tools have become more sophisticated, practices are undoubtedly evolving and there are definitely lessons from the pandemic that are worth our consideration.

That is why I very much welcome an opportunity to stand back and reflect on what has changed since 1967, which the noble Lord, Lord Alton, referred to, when the current settlement on abortion was agreed. That was an incredibly important moment, when those with different views engaged with public opinion, clinical judgment, ethical analysis and spiritual leaders. I accept that that settlement made in 1967 will not last for ever. In fact, I agree with my noble friend Lady Sugg that the arrangements that have been in place for many years definitely need a second look. If we agree that the moment is right, I emphasise that any reconsideration of these issues should be done in a thoughtful, considered fashion and that we should engage the large number of people who have strong feelings, as well as expert opinion.

We need to do this because these issues are extremely complex and the evidence is conflicted, and they engage so many different strands of our emotional, spiritual and intellectual life. If this this debate this evening is a starting gun for that process, I would recognise its significance and ask the Minister to reflect on the moment in his comments.

However, if this amendment is a realistic attempt to bring about a significant long-term change to the clinical pathways of our health system, I would be extremely alarmed. Regarding the point made by the noble Lord, Lord Alton, on procedure, I have serious concerns. There is no value in blowing up the long-term arrangements that were agreed in 1967 in a late-night Report debate on an amendment introduced at the last minute to a Bill that is about the integration of our healthcare system. It would be a travesty if the easements that were brought in to cope with a global pandemic were used as a pretext for a long-term rewriting of our abortion laws. We were promised that that would not be the case, and it would be regrettable if this Government went back on those reassurances.

I draw to the attention of noble Lords the report by Gynuity Health Projects, published in March 2021, on its study of the efficacy of telemedicine abortion. It found that 5% of participants using the medical abortion treatment at home needed surgical intervention to complete the procedure. These are worrying numbers and are worthy of further investigation before the current situation passes into legislation.

My hope is that this amendment is regarded for what it should be: a testing amendment to stimulate debate and not a serious effort to overturn arrangements that need to be reformed, not overturned. That is why I call on the Minister to explain why this amendment should not stand, and on my noble friend Lady Sugg to confirm that she will not be moving her amendment.

[Baroness Finlay of Llandaff (CB)]

My Lords, I find myself conflicted over this amendment. I am probably the only person in this Chamber who has consulted women over abortions, signed forms for abortions and performed abortions and I have been with women during late abortions for foetal abnormality. It is a complex area. I have also had women say to me, in the privacy of the consulting room, just before they go, “I have never told anybody else this before”—they have then told me about the serious abuse that they have suffered.

My worry with the first part of the amendment, on remote consultation, is that you do not know who is on the other side of camera or who is standing in the room with the woman. You do not know whether the man is using fertility and sex as a form of abuse and is standing there threatening the woman to proceed in one way or another. We know that men refusing to use condoms is a common form of coercive control of women.

The abortifacient tablets, to which my noble friend Baroness Watkins referred, are a separate step. It is inhumane to expect women to take those and then travel on a bus or even go in a taxi. Knowing what has happened before, I cannot help feeling that there is another step. Yes, let the women have their tablets and take them in the privacy of their own home. It is not pleasant to undergo an abortion—nobody should think that it is—but those women also need support and contraceptive advice as part of the package. I am concerned that I do not see that in this amendment and I have been concerned that during the pandemic the ability of women to access contraception may have become more difficult.

This is a complex issue. It is about a pathway with many steps in it. I wonder whether we should return to it at Third Reading, rather than trying to take a yes or no decision tonight on something that has some merits but also some problems. We are not adequately going into them by having a short debate now.

[Baroness Stowell of Beeston (Con)]

My Lords, it gives me great pleasure to follow the noble Baroness, Lady Finlay, whose contribution reflects her extensive wisdom and knowledge in this area. I just want to say that I commend my noble friend Lady Sugg for her leadership in bringing forward the amendment. I, too, will listen to what the Minister says in reply this evening, but instinctively I support what my noble friend is seeking to achieve.