Amendment 172

Health and Care Bill - Report (4th Day) (Continued) – in the House of Lords at 9:17 pm on 16 March 2022.

Alert me about debates like this

Votes in this debate

Baroness Finlay of Llandaff:

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 statementThis amendment aims to ensure that disputes between parents and doctors will be able to engage effective mediation.

Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Deputy Chairman of Committees, Deputy Speaker (Lords)

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.

Photo of Lord Russell of Liverpool Lord Russell of Liverpool Deputy Chairman of Committees

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

Photo of Baroness Brinton Baroness Brinton Liberal Democrat Lords Spokesperson (Health)

My Lords, I have put my name to Amendment 172. I thank the noble Baroness, Lady Finlay of Llandaff, for tabling this improved amendment, with important changes since Committee, as she has very helpfully explained to your Lordships’ House. I believe that this helps to find a way to balance the views of the child’s parents and the child’s doctors, and it is reassuring that many of the stakeholders from different perspectives have come to agreement on this.

The amendment also makes it clear that nothing affects the principle of the best interests of the child. This means that no medical professional could ever be forced to provide a medical treatment that they do not believe is in the best interests of the child, and that any other provider of such medical treatment would have to provide evidence during the mediation that this would benefit the child.

Another key reason for the need for this amendment is that at the moment mediation provision across England is inconsistent. While there is certainly excellence, there are also some problem areas. Having in legislation an independent mediation process made available at the earliest stage possible can help facilitate less confrontational conversations while supporting both sides in the argument.

The issue of parent-doctor conflicts will continue to persist frequently unless the Government can consider this amendment, and I strongly urge them to do so. If the noble Baroness, Lady Finlay, were to call a Division, we would support her on this, but I hope that the Minister will be able to provide some positive news.

Photo of Lord Russell of Liverpool Lord Russell of Liverpool Deputy Chairman of Committees

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

Photo of Baroness Masham of Ilton Baroness Masham of Ilton Crossbench

My Lords, I have my name to Amendment 172, and I congratulate my noble friend Lady Finlay of Llandaff on her persistence on this important matter of mediation. It is a proven way of dismantling conflicts before they reach the courts.

Over the years, there have been some tragic cases when relationships have broken down between doctors and family members. When this happens in a hospital environment, parents can feel backed into a corner, with no alternatives. Mediation gives the opportunity for the parents to give their views and to hear the doctors’ views too at the earliest stage.

Ending up in the courts costs parents, hospitals and the Government hundreds of thousands in legal fees and causes avoidable distress and concern to all those involved. The only people who win are the lawyers. Parents have to live with grief and the decisions which have been made for their child for the rest of their lives if the results are not good. They want to know that they tried everything possible to give their child the best chance.

I feel that there should be adequate training for doctors, nurses and social workers in the values of mediation so that there is a team approach to treating a child in a life-and-death situation. I hope the Minister understands the need for this amendment and will accept it.

Photo of Baroness Stowell of Beeston Baroness Stowell of Beeston Chair, Communications and Digital Committee, Chair, Communications and Digital Committee

My Lords, it is always a great privilege to follow the noble Baroness, Lady Masham of Ilton. I too have added my name to Amendment 172 and commend the noble Baroness, Lady Finlay, for the way in which she introduced it. This debate could risk sounding technical and legalistic, but it is really about redressing an imbalance of power between doctors and parents when their child is desperately sick and at risk of dying and decisions are being made about how best to care for them.

I will not repeat all that I said in Committee, but my attention was drawn to this issue just over a year ago by listening to Connie Yates describe the ordeal that she and her partner Chris endured through the courts when the Great Ormond Street Hospital doctors disagreed with their decision as parents to seek alternative treatment for their baby. Theirs may be an extreme example of what it means not to be listened to or taken seriously by highly qualified professionals who, because they know more, believe they know best, but it is all the more profound because, as parents, what they experienced was not right, and it certainly was not what they deserved.

While this kind of ordeal might be rare, the wider principle—ensuring that we are all taken seriously when we deserve to be—needs promoting with vigour by those of us who enjoy great power and privilege. We need to go out of our way to redress imbalances where we see them, because the inequalities and unfairnesses that people feel, which have driven the political realignment we have seen in recent years, will not be fixed by infrastructure projects or economic decisions alone.

This Government are clearly committed to levelling up, but one of the most important ways of us achieving that goal is cost-free because it is about mutual respect. People want and deserve mutual respect from the professionals and experts they rely on for all sorts of things, but especially in their hour of greatest need.

I am very grateful to my noble friend the Minister for the care and consideration he has given to this issue since Committee, and I will of course listen carefully to what he has to say when he responds to this debate. I should add that my noble friend Lord Howe is a great example of humility from anyone who enjoys status and privilege.

I also understand that the Government will be reluctant to legislate. I understand that principle—it is not normally the solution I would reach for—but the proposal in the amendment that the noble Baroness, Lady Finlay, has brought forward is really modest. The doctors are not losing any power. We are just ensuring that parents of desperately sick children are shown respect and taken seriously when it comes to discussing with doctors how to do what is best for their child. All it does is make sure that, if relations break down, the doctors cannot go straight to court and rely on yet more highly qualified professionals, to the exclusion of the families in such a desperate situation.

As she said she would, the noble Baroness, Lady Finlay, has listened to all those who raised legitimate questions in Committee and has changed the amendment to address their concerns. I sincerely hope that my noble friend the Minister feels able to accept it.

Photo of Lord Balfe Lord Balfe Conservative 9:30, 16 March 2022

My Lords, my only previous intervention on the Bill came about when I read the proposed clause, and in my capacity as a trained mediator I thought that the original proposed clause was not very sound. The proposed new clause is a huge improvement on that, and I hope it will be looked on with favour. As the noble Baroness said, it is about evening up the power relations.

If you are in a hospital and dealing with anyone who is ill, but particularly small babies, it can be a very difficult experience. My daughter-in-law had two very small twin babies. Gathered around the incubator were one PhD and three decent BScs, and we did not know what to do. We felt quite powerless, but we also felt that it was very difficult to get the doctors to tell us what the prognosis was. In fact, the prognosis was quite good—they recovered and are now both in the school football team—but at the time there was on our part a great sense of powerlessness and a feeling that the doctors did not feel they really needed to communicate with us. That level of powerlessness is what this aims to address.

It is about early access to independent mediation. The first qualification of a mediator is that independence. They will not get a result, and nor should they, unless they have the trust of both sides and unless both sides enter into it in a good spirit, looking for a solution. Finally, if they get a solution, it has to be one that sticks. That is why the amendment refers to

“the senior doctor with overall clinical responsibility.”

This cannot be a mediation where a junior member of the medical staff is sent along, where it has no binding effect and where the senior doctor looks at it and says, “I don’t like that; we’re not going to do that.” There has to be some sort of legislative backing.

However, as noble Lords will have seen, the amendment states:

“Where the authorities … become aware of the difference of opinion they must take … reasonable steps.”

It is all about getting consensus; it is about releasing medical data to both sides, and it is about ensuring that the doctors responsible for treatment are at least obliged to listen to any alternatives that the parents might wish to put forward.

When we last debated this issue, I advised—and indeed this has been done—that we knock out the financial provisions, because we thought that the Government would object and say, “We can’t sign a blank cheque.” However, clearly not all the people listened, because this very morning the Ministry of Justice released its Legal Aid Means Test Review, which states:

“We are proposing to increase significantly both the income and capital thresholds for legal aid eligibility, and remove the means test entirely for some civil cases. These include legal representation for children, and legal representation for parents whose children are facing proceedings in relation to the withholding or withdrawal of life-sustaining treatment.”

It rather shoots the government fox that was running around, does it not? It was said that mediation would encourage litigation, whereas now mediation will discourage litigation, because it will be in the interests of both the health service and the medical profession to make mediation work. In making it work, they will not have days and days in court, but they will have a chance of putting the case to a mediator—having been one, I can tell you that it is a lot cheaper than a barrister—and coming to an agreement without needing the great generosity of our Deputy Prime Minister, Dominic Raab, in offering to pay all these costs. I must say that I was surprised by that statement, but if anyone wants to read it, there are multiple copies in the Printed Paper Office, which is where I got mine.

I hope that the Minister will be able complement his colleagues in the Ministry of Justice by taking a positive attitude to curing this particular result. Otherwise, we will be in a position where the Department of Health and Social Care is saying no to mediation, but where we are now going to get free access to the law courts to run up huge bills. What the Ministry of Justice does not say is which departmental budget will pay for this concession. I would not mind placing a little bet as to which one it has in mind.

So I am asking the Department of Health and Social Care to save itself some money, thanks to the beneficent amendment proposed by the four noble Baronesses and supported by me. We are out to save the Government some money, to make it much easier and to build into the system a right for parents to have a more evenly balanced say in what happens to their child at what is a very difficult and distressing time for many of them.

Photo of Baroness Fraser of Craigmaddie Baroness Fraser of Craigmaddie Conservative

My Lords, I did not contribute to the debate on this amendment in Committee, but I did sit and listen to the contributions from around the House. What struck me was that in his characteristically sympathetic response, the Minister had not quite understood the purpose of the amendment and the problems it would solve. He stated that the amendment would place the views of parents and guardians above those of clinicians. I do not see that this is the case, especially with the revised amendment that we have before us. Unfortunately, it is a reality that parent-doctor conflict happens. I declare an interest as chief executive of Cerebral Palsy Scotland, and I have seen far too often the views of parents dismissed by clinicians. No matter how qualified parents may be, or what their role in life outside the hospital may be, they are consistently referred to only as “mum” or “dad”. Too often there is an imbalance of power with doctors, and too often parents are labelled as “difficult” or “sharp-elbowed”, as if wanting to do the best for your child is an irritant, and such parents should be grateful for what they get.

By the time a family is faced with palliative care, they will undoubtedly have been through the care of many clinicians: specialist, community, hospital and, potentially, hospice teams. The parents are therefore often the one consistent factor, and they are especially important when the child is too young or too ill, or unable to voice their own views. It is when parents feel they have not been listened to by clinicians that they resort to formal complaints or litigation. It is a last resort, but too often it is the only resort that is open to them. This amendment seeks to address this by giving them space for a formal coming together of all interested parties at an earlier stage, and so preventing costly and lengthy legal disputes. It does not place one party’s views above others; it does not, as outlined in proposed subsection (3), require the provision of resources for any treatment or require a doctor to provide treatment not in the best interests of the child. It simply ensures that there is a clear framework in these tragic, difficult cases to guide what happens next.

This amendment is designed to solve a problem currently faced by families and clinicians at moments of crisis. I urge the Government to consider it, and I will listen carefully to the response of the Minister tonight.

Photo of Lord Alton of Liverpool Lord Alton of Liverpool Crossbench

My Lords, the House will want to move on quickly, so I will not make the speech that I intended to make on this issue, but I would very much like to endorse what the noble Baronesses, Lady Fraser and Lady Stowell, the noble Lord, Lord Balfe, and my noble friend said in their earlier speeches. I know Connie Yates and Chris Gard, who are the parents of Charlie Gard, who died in 2017 of mitochondrial DNA depletion syndrome. Indeed, I have entertained them here in the House, arranged meetings for them and travelled with them. I entirely agree with what my noble friend is trying to do. This will make mediation work; it will create a proper balance and equality of arms. No parents should have to face litigation in these often tragic and troubling circumstances, so this is a good amendment and I hope the Minister will feel he can accept it.

Photo of Lord Sentamu Lord Sentamu Crossbench

My Lords, I was patron of Martin House in York, which is one of the amazing hospices that care for children and their parents. I was invited by the parents of a nine year-old, who was having a very difficult and trying time, to talk to clinicians, because they did not think that they were being heard. As we talked, it became clear that that was not true: the clinicians were on the side of the parents, but their language was not helpful. We had this amazing conversation, and as a result the needs of the child and the aspirations of both the parents and the clinicians matched, and we were able to get very careful care. What the noble Baroness, Lady Finlay, is trying to do is recognise that in most cases parents have good desires, and clinicians probably know more than they are willing to say but hold back because of the sheer pain and difficulty that they see on the faces of everybody, and another voice can help in these situations.

Should I call it mediation? No, it is a coming alongside. In my time as patron of Martin House in York, I had probably 20 such conversations. The new chief executive has been training other listeners. Without this, in the midst of sheer pain, people polarise when they should not. So I support this because, in my experience, it has opened doors and then the conversations become better.

What was amazing for this young boy called Paul is that the parents are now great supporters of that hospice. They are able to talk to other parents and say that mediation is the best way; please do not polarise when facing such deep problems.

Photo of Baroness Merron Baroness Merron Opposition Whip (Lords), Shadow Spokesperson (Health and Social Care), Shadow Spokesperson (Digital, Culture, Media and Sport) 9:45, 16 March 2022

My Lords, this eminently sensible amendment sets out various considerations aimed at ensuring that there can be effective mediation when there is a dispute over children’s palliative care. There has been considerable discussion to bring this amendment to its current iteration and I pay tribute to the noble Baroness, Lady Finlay, for her efforts around this, having already secured a meaningful amendment to ensure that ICBs must commission the palliative care services they consider appropriate.

Your Lordships’ House is aware that this amendment and debate come out of the heartbreaking situation of Charlie Gard and multiple other cases like his. I therefore know that this issue has to be handled and considered incredibly delicately, taking into account the best interests of the patient receiving care above all others.

Balancing the views of clinicians and parents is intrinsically and incredibly difficult, and particularly challenging to codify in legislation. This amendment is a rational measure to move towards achieving a better balance and keeping matters out of the court, as the noble Baroness, Lady Finlay, referred to in her opening. We certainly support its intent and I therefore hope that the Minister’s response gives it due justice.

Photo of Earl Howe Earl Howe Deputy Leader of the House of Lords

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.

Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Deputy Chairman of Committees, Deputy Speaker (Lords)

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.

Ayes 112, Noes 107.

Division number 4 Health and Care Bill - Report (4th Day) (Continued) — Amendment 172

Aye: 112 Members of the House of Lords

No: 107 Members of the House of Lords

Aye: A-Z by last name

No: A-Z by last name

Amendment 172 agreed.

Amendment 173 not moved.