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

Baroness Finlay of Llandaff Excerpts

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

Moved by

[Baroness Finlay of Llandaff]

That the Bill be now read a second time.

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare my interests in palliative care, including as vice-president of Marie Curie and of Hospice UK and other roles declared in the register. I particularly welcome the noble Lord, Lord Brownlow of Shurlock Row, who has chosen this Bill for his Maiden Speech.

Let me make it clear: this has nothing to do with assisted dying. My Bill aims to solve two problems for the Government. The first is the ongoing variable access to hospice and specialist palliative care, with even less available out-of-hours. The second is to try to avoid some of the very distressing cases that have gone to court where there is disagreement between the clinical team and deeply distressed, loving parents over the best course of action in the management of a child with a serious life-limiting condition.

I will start with palliative care, which the Conservative manifesto committed to support. Last year, over 492,000 people died in England. It is estimated that, at any time, about 0.75% of the population will have palliative care needs, because the majority of those dying will have a significant terminal phase to their illness. Yet about one-third do not receive palliative care when they need it, particularly those with non-cancer diagnoses, or who are from marginalised communities, LGBT+ or of black and ethnic minority heritage. Those facing death are not just older people. Currently around 49,000 children and young people under 18 and over 55,000 young adults aged 18 to 40 are living with a life-limiting or life-threatening condition; almost 13,000 are aged 18 to 25. Even excluding oncology patients, this prevalence had risen by one-third in a decade, yet palliative care support for these young people is even more patchy than for older adults or small children. That is why the Bill covers all ages.

We know what to do, but we are just not doing it. I am grateful to the Minister for meeting me. I fear she will say that the Government feel they can achieve improvements without legislation, but it has not happened for decades. Major health improvements sometimes need the jolt of legislation and this is one of them. Two examples are smoking cessation, which needed a ban on advertising and smoking in public places, and wearing seat belts in cars. In recent years, many reports have highlighted deficits in palliative care provision, referred to in the many briefings which have been supportive of the Bill. The ombudsman’s report, Marie Curie’s research into inequitable care, and the BMA’s qualitative, in-depth study into end-of-life care are examples. Despite 20 years of strategies and policies, my own inquiry five years ago revealed a 40-fold variation in indicative budgets from clinical commissioning groups, ranging from under £50 to almost £2,330 per palliative care patient per annum. Yet almost half the respondents had no plans to update or review their palliative care provision.

Now it is no better; the End of Life Care Coalition found that 18 of 44 sustainability and transformation plans do not even mention end-of-life care, let alone how they would improve it, and only 40% of clinical commissioning groups provided Marie Curie with data on fast-track packages of care. Following Second Reading of a previous iteration of the Bill, the Minister kindly wrote to me confirming that there is a statutory duty to provide maternity services. Indeed, the duty is far wider than only for the ubiquitous experience of being born. In Section 3(1) of the NHS Act 1977 the general duty on the Secretary of State to provide

“to such an extent as he considers necessary to meet all reasonable requirements”

has a list which includes

“such other facilities for the care of expectant and nursing mothers and young children as he considers are appropriate as part of the health service.”

A notable aspect of the way this list is written is that it focuses on the diagnosis, treatment and aftercare of those who have suffered from an illness. In 1977, there was a deep culture of death denial. When services only strived for cure, death was a failure. Indeed, only 10 years earlier Cicely Saunders had opened her hospice—St Christopher’s—and had begun to shine a bright light on the need for medical research to improve the care of the dying. From that beginning, the hospice movement came about outside the NHS and gradually, as the benefits of all it does became evident, the specialty of palliative medicine was recognised in 1989, 12 years after the 1977 NHS Act mandating maternity care. Now it is time to update the obligations of the NHS and end excessive reliance on voluntary donations to provide care for the only other universal experience after birth, which is death.

Hospices renowned for excellent care have sprung up across the UK. Outreach teams go into people’s homes and hospital support teams transform patients’ experience when faced with a terminal illness. All too often, that is at the time of diagnosis. We all recall our much-loved colleague Lady Jowell and her powerful advocacy for research moving the frontiers of knowledge to improve care and outcomes. Systematic reviews, including one I co-authored, have shown the outcome benefits and cost efficacy of palliative care teams. These services are concerned with far more than just the last days of life.

NHS England has estimated that improved recognition of palliative care needs and services outside hospital could improve care and reduce hospital costs by £180 million a year. Previous iterations of this Bill contained more detail—detail that is better in accompanying guidance. The Bill would ensure that those commissioning services meet the duty to reduce inequalities, as required in Section 1C of the National Health Service Act 2006. It reinforces current strategies, such as the “Ambitions” framework, to meet the Government’s commitment, in “Our Commitment to you for end of life care” and the comprehensive personalised care model, to end variation by 2020. It fulfils the pledges of the NHS constitution and the rights of patients to care appropriate to their needs.

Last August’s announcement by the Prime Minister of a welcome £25 million to be administered through sustainability and transformation partnerships is a one-off grant. Unless changes are incorporated in strategic plans, as Clause 4 of the Bill requires, improvements will not be sustained. Clause 2 would ensure that a hospice with in-patient beds can access supplies from the drug tariff. There is a wide variation in how hospices access the medication and supplies they need, especially out of hours. Hospices with adequate pharmacy support can provide expert advice on medicine management, particularly for complex treatment regimes, reduce prescribing errors and ensure safe medicine supply and disposal.

Some 27 years ago my hospice was the second in the UK to take on a part-time pharmacist; in her first two years she saved more than the cost of her salary. Now, although many hospices have pharmacy support, the arrangements with CCGs are very variable, ranging from nil to more than 67 hours a week, but many cannot access GP or hospital records. I have been given examples of hospice drug costs being halved when supply was transferred from an FP10 model to a full hospital pharmacy supply.

I turn to the difficulties and tragedy of children who are imminently dying, where conflict results in an application to the High Court under the Children Act 1989. The wording of the Bill has been developed following several publicised cases where the parents of a child with a life-limiting prognosis sought other treatment options. Sometimes, communication broke down to such an extent that court action was instigated over proposed treatment or treatment-withdrawal decisions, or to prevent transfer of the child’s care to another reputable provider. I am grateful to Chris Gard and Connie Yates, here today, who generously shared their experience to try to prevent others going through what they experienced, when a polarisation of views made it all the harder for clinicians and Charlie’s parents. They had sought a three-month trial of an oral supplement costing £3,000, with a suggested chance of success of more than 50%. They knew it could fail, yet legal fees of more than £l million, a media circus and acrimony ensued. Three years after Charlie’s death, his mum says, “I just wanted to know we’d done everything we could.” Such grief does not fade.

Legal action has many detrimental effects. It exacerbates failures of communication, increases stress and has long-term mental health sequelae. Clause 2(2) states that independent mediation must be offered early by the hospital when views are diverging before proceeding to court. Mediation, voluntarily undertaken and with information shared openly between clinicians and the parent or parents, can ensure that parents feel listened to and are less intimidated by the power differential of clinicians with complex medical knowledge. Options for a second opinion can be discussed. Of course, if mediation fails for whatever reason or the child needs urgent life-saving interventions or abuse is suspected, subsection (2) would not apply.

Some major clinical decisions are terribly difficult. Overall, treatment or an intervention is ceased because no therapeutic goal is being achieved or the intervention has become excessively burdensome. Similarly, a proposed intervention that poses disproportionate risks of significant harm would be withheld or the risks minimised by transferring the child to a more suitable setting. However, often things are far from clear-cut. They must be carefully weighed in the balance of harms against benefits, but risk aversion must not deny realistic hope. Prognosis is an inexact science and the ways a child adapts to progressive disability are unpredictable.

When deciding the best interests of the child, all aspects of the child’s life and experience must be considered. When the child can express wishes and feelings, these are paramount. When they cannot, it is the parents who normally know the child extremely well, and are aware of the child’s wishes and feelings, aspects that comfort the child and the way that the child feels valued. While the child is alive and therefore has interests, those interests are unique to that child; but all interests cease on death.

Clause 2(4) would give appropriate weight to parental views in the court process, in line with societal and medical norms, in the weighing up of the benefits and disbenefits of a proposed course of action. I am most grateful to the noble Baroness, Lady Jolly, for sharing with me a draft amendment that may help clarify this in relation to disproportionate risk of significant harm and improve this subsection, which I know has caused some concern. The subsection does not form a court direction. It is compatible with the Children Act, which emphasises the crucial importance of the child’s interests, wishes and feelings. It allows the healthcare provider to have the chance to show that a different treatment plan is in the child’s best interests. It does not give precedence to one parent’s view over another; the court must decide on an individual basis, as at present.

This Bill solves two major problems for the Government. First, it can show that they are determined to ensure good palliative and end-of-life care for everyone, everywhere, at all times of the day or night. Secondly, it would resolve some distressing disputes between loving parents and clinicians, rather than proceeding to court. I beg to move.

--- Later in debate ---

[Baroness Finlay of Llandaff]

My Lords, I thank all noble Lords who stayed behind on a Friday to contribute and who have done so much research behind the speeches they gave in support of my Bill. I can confidently say that the first part of the Bill has full—from many, completely overwhelming—support. I am extremely grateful for that, as will be all those who are trying to provide excellence in end-of-life and palliative care. I single out the noble Lord, Lord Brownlow, for his amazingly warm maiden speech, in which he showed his understanding of vulnerability and of the fundamental principle of the duty of people in society to look after each other. All noble Lords gained a great deal from it.

I know that the hour is late and we all want to move on, but I will turn briefly to the concerns expressed over Clause 2(4). I am delighted that so many noble Lords want to discuss it. I am more than happy to do so, and to amend it. We have to get things right; this was my humble start. We have fantastic expertise. I reassure the noble Lord, Lord Hunt, that I am in conversation with Together for Short Lives. The noble Baroness, Lady Jolly, has been incredibly helpful to date and I am sure would join me when I say that we should expand the discussions to include the noble and learned Baroness, Lady Butler-Sloss, the noble Lord, Lord Hunt, the noble Baroness, Lady Brinton, and my noble friend Lady Hollins, all of whom have enormous experience. There is no conflict; the wording in the Bill is not right. However, we do need to rebalance the way that the voice of the parent who is genuinely concerned can be heard—probably in the pre-court time—and is then represented by barristers speaking on their behalf.

I take slight issue with the noble Baroness, Lady Meacher, over parents always wanting their child to stay alive. I have had in-depth conversations with parents who have said: “Enough is enough. Can we withdraw? Can we stop?”. I have been involved in extubating children and looking after them as they die peacefully and gently in their parents’ arms. I have helped parents lay out their child after death. It is such an anguishing time, but their overriding concern is to prevent the suffering of the child they love and to have their views and culture respected in the way that that is done.

I am grateful, too, to the noble Lord, Lord Berkeley of Knighton, for highlighting the need for open conversations. I declare an interest in Dying Matters; it is part of Hospice UK and I was part of the group that set it up. It has done an enormous amount to lift the lid off the taboo. People now talk openly about dying. If you go in to any out-patient department, people will sit and talk openly with clinicians about their death and dying. In the gap, the noble Lord, Lord Kerr of Kinlochard, rode into the debate like a shining knight to blow apart the reasons for not legislating for access to palliative care. I would welcome further advice from his vast experience on how we drive this forward. I am sure that that will be in conjunction with the noble Lord, Lord Ribeiro, who brought his experiences and salutary tales of how it used to be. He and I know how awful it was and how it does not need to be like that.

On mediation, the noble Lord, Lord Balfe, made a point about the great importance of listening. Nearly always, things go wrong when people have not listened early on—listened to what people say, listened to their expectations and tried to understand things from their point of view. How true that is. If only people spent 80% of their time listening instead of talking, we might have less misunderstanding.

The noble Lord, Lord Sheikh, brought his experiences of the hospice world and his wide support for it, and also his experience of mediation, to support this. I do think a pilot would be most welcome, as the noble Baroness, Lady Stroud, said in talking about the need for mediation. In fact, there is a Court of Protection pilot going on at the moment over mediation, run by a group of solicitors. There is something to be said for the complete independence of somebody coming in, rather than the clinical team that is already involved and can be perceived as having already taken some kind of stance. Certainly, any kind of pilot needs evaluating, so all those comments were very welcome.

Finally, the noble Baroness, Lady Brinton, highlighted that resources are not just money but also people, and the noble Baroness, Lady Thornton, pointed out that you need people to address the variations: money does not do it, you need trained people. She asked about the number of people in palliative medicine. I just sound a tiny note of warning because, as the shape of training changes, there will be fewer doctors for a time, unless we put the numbers up: they will be doing a lot more in acute medicine and supporting acute medical services, bringing their skills there—but we cannot think that, just because the numbers have gone up from the early days, we have got there yet.

I hope that I have adequately paid tribute to the fantastic contributions of everybody in the debate and I look forward to discussions with the Secretary of State and the Minister with responsibility for this area, because I feel we are at the point where sometimes it needs a jolt. I go back to the analogy with seat belts and tobacco control. Perhaps I have still got too much in the first part of my Bill; I am happy to take it down. But laws send messages, and the variation, as seen in the atlas, despite all the work that so many of us have done over decades, shows that it is now time for that jolt to happen. I beg to move.

Bill read a second time and committed to a Committee of the Whole House.