The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I congratulate the noble Lord, Lord Warner, on securing this debate and on his excellent speech. Indeed, we have listened to a series of moving and powerful speeches throughout the debate, which I, for one, greatly appreciate. We have heard of a number of excellent experiences of care for people approaching the end of their lives. Unfortunately, there have also been reported some much less happy experiences, not least those referred to by the noble Lord, Lord Blair, and the noble Baroness, Lady Masham.
I know that the noble Lord, Lord Warner, is a keen supporter of better end-of-life care services, and I confirm to him immediately that the Government are committed to developing and supporting end-of-life and palliative care services, to ensure that the care people receive, whatever their diagnosis and wherever they are being cared for, is compassionate, appropriate, good quality and supports the exercise of choice by care users. That position is common to all speakers this afternoon.
As noble Lords have so eloquently said, we know that most people would prefer to be cared for and die at home, in familiar surroundings, with their family and friends, and this can also mean a care home where that has become someone’s home. However, we also know that most people die in hospital, the place where many would least prefer to be. Realistically, as the noble Lord, Lord Dubs, pointed out, many people will continue to die in hospital. They may be too ill to be anywhere else, they may need specialist care, they may have an illness that quickly takes hold, or it may be their choice to do so, following discussions with their families and care professionals about their health and care needs. Because of this, we continue to work to ensure that hospital care improves and much encouraging work is being done on this, including through the National End of Life Care Programme’s Transform programme for acute trusts. This will really improve services, integration and, ultimately, people’s experiences.
However, as the noble Baroness, Lady Masham, movingly reminded us, many people die in hospital unnecessarily and more could be cared for and die at home if resources were in the right place and if systems enabled services to be provided where and when they were needed. We made the commitment in the White Paper, Equity and Excellence: Liberating the NHS to,
“move towards a national choice offer to support people’s preferences about how to have a good death”.
Liberating the NHS: No Decision About Me, Without Me reiterated our commitment to introducing a right to choose to die at home, including a care home, when services are well enough developed to allow that to be a realistic offer so that people have access to appropriate, high quality care. Responses to the Liberating the NHS: Greater Choice and Control consultation demonstrated strong support for this.
This choice has, of course, to be within the current legal framework. For choice to become a reality, commissioners and providers need to ensure that quality services, especially in the community, are available. A lot of work is needed in order to enable this to happen, but we are making steady and encouraging progress. The latest data show that 42.4% of people now die in their usual place of residence—that is, at home or in a care home—where people say they want to be. I take the point of the noble Lord, Lord Warner, about local variation, which we must certainly tackle and will, through the strategy, but we can compare that figure to 2008, the year the Department of Health’s end-of-life care strategy was published, when 38% of people died in their usual place of residence. In contrast to that, just over half die in hospital. Again, that’s a big improvement from 2008, when about 58% of people died in hospital. This means that almost 30,000 extra people have been able to die in the community, where they wanted to be. For each of those people, for each of their friends and family members, that is a huge comfort.
The steady progress has been the result of much hard work by many health and social care professionals, all underpinned by our ongoing work to implement the end-of-life care strategy. Your Lordships will know that the strategy received cross-party support when published in 2008. It aims to improve care for people approaching the end of life, whatever their diagnosis and wherever they are, including enabling more people to be cared for and die at home if they wish. On 16 October, we published the strategy’s fourth annual report, which describes in detail the work being undertaken. This can be found on the department’s website and I commend it to your Lordships as a good and encouraging read, but I want to highlight two key areas.
Electronic palliative care co-ordination systems allow people to express their preferences for care, to ensure proper care planning and for that care to be co-ordinated. The noble Lord, Lord Low, and the noble Baroness, Lady Masham, in particular, will welcome this. The EPaCCS contain key patient information and are intended to be accessible to all appropriate service providers, including ambulance services, out-of-hours services, A&E and community services. I believe that they have the potential to improve communication, co-ordination and the planning and delivery of care. More than 30 EPaCCS are now implemented or in development around the country and the rollout is continuing.
I also want to mention VOICES, the first ever national survey of bereaved relatives, helping us to understand how people actually experience care at the end of life and giving commissioners an invaluable critique of services. A critical common theme of these and other activities is communication between services, between organisations and, most important, between patients, their families and health and social care professionals. The noble Baroness, Lady Finlay, was wholly right in drawing attention to this, as she was on so much else in her excellent speech. I cannot overemphasise the part it plays in improving care at the end of life to the benefit not only of the patient, but of the bereaved.
On Monday, the Government launched a consultation on a range of proposals for strengthening the constitution, drawing on the recommendations of the NHS Future Forum. I was particularly appreciative of the comments of the noble Viscount, Lord Craigavon, on those proposals. One of the forum’s recommendations was that the constitution should be much stronger on patient involvement and shared decision-making. We agree. Our proposals make several important changes here—strengthening principles, rights and pledges. In particular, I say to the noble Baroness, Lady Masham, that we also set out a new responsibility on NHS staff to involve patients, their families and carers and to treat patients not only well but compassionately. But we go further by proposing to include end-of-life care in the constitution for the first time.
First, as mentioned by the noble Lord, Lord Hunt of Kings Heath, we propose to strengthen the right of patients, their families and carers to be involved fully in discussions and decisions about their health and care, including their end-of-life care. This draws on the new statutory duties on commissioners to promote the involvement of patients set out in the Health and Social Care Act 2012.
Secondly, we propose to introduce a new pledge on care planning. This sets out a commitment by the NHS to involve patients in discussions about planning their care and to offer them a written record of what is agreed if the patient wants one. This would apply to patients with long-term conditions or at end of life.
The Government believe in and fully support the constitution. We have identified a range of proposals to strengthen it. As part of this, we feel it is helpful to make clear to patients what they are entitled to expect from the NHS at the end of life.
The noble Lord, Lord Blair, the noble Baroness, Lady Greengross, and the noble Viscount, Lord Craigavon, among others, drew attention to the need for there to be awareness of people's wishes at the end of life and to give informed choice to patients. To be able to have real choice, people need to understand what their options are and have proper discussions about the issues around end of life care. But that is constrained by our general lack of willingness to discuss death and dying. That is why we are supporting the Dying Matters Coalition, which is encouraging discussions among the public and raising awareness of end-of-life care issues. That is a particularly welcome development.
A number of noble Lords referred to the draft mandate, including the noble Baroness, Lady Greengross, the noble Lord, Lord Warner, and my noble friend Lord Howard of Lympne. We are aware of the concerns that have been raised during the consultation process that the draft mandate did not include end-of-life care. It is being given careful consideration as we come to finalise the mandate over the coming days.
My noble friend also referred to uncertainty over the future of state funding for hospice care. I would like to acknowledge today the important role of the hospice sector, particularly its valuable contribution to care in the community such as hospice at home services. My noble friend will be familiar with the work that we are taking forward on the development of a per-patient funding system. The aim of the department’s work on palliative care funding is to develop a per-patient system. The work will build on that of the independent palliative care funding review. The new funding system that we are aiming to develop and introduce will cover care regardless of which organisation provides it, encourage more community-based care so that people can remain in their own homes and be fair and transparent to all organisations involved in end-of-life care. The aim is to have a new system in place by 2015, which I hope is of some reassurance to the right reverend Prelate the Bishop of Norwich.
The noble Lord, Lord Hunt, asked about free social care at the end of life, as recommended by the palliative care funding review. In the care and support White Paper we stated:
“We think there is much merit in providing free health and social care in a fully integrated service at the end of life”.
The White Paper went on to say:
“We will use the eight palliative care funding pilot sites to collect the vital data and information we need to assess this proposal, and its costs, along with the Review’s other recommendations. A decision on including free social care at the end of life in the new funding system will be informed by the evaluation of the pilots, and an assessment of resource implications and overall affordability”.
The noble Lord, Lord Low, mentioned his wish that the constitution should cover test and treatment options and care planning. On this, as on a number of other issues, including the Liverpool care pathway, I am afraid that time prevents me from replying as I have just been reminded of the clock. However, I assure noble Lords that I shall write on points that I have not covered.
For the future, we have committed to undertake an evaluation of the progress we have made. This will take place in 2013. It will inform us when the introduction of a right to choose to die at home, including a care home, might realistically be feasible. We are currently considering how this evaluation might best be undertaken. I will ensure that your Lordships are kept fully up to date with this work once it has commenced. Your Lordships can be reassured that we remain committed to continuing our work to improve quality and choice in end-of-life care.