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House of Lords

Friday, 23 February 2007.

The House met at eleven o’ clock: the LORD SPEAKER on the Woolsack.

Prayers—Read by the Lord Bishop of Coventry.

Palliative Care Bill [HL]

Baroness Finlay of Llandaff: My Lords, I beg to move that this Bill be now read a second time.

I bring this Bill to you 40 years since St Christopher’s Hospice opened and 20 years after the specialty of palliative medicine was officially recognised. What does my Bill do? It lays an obligation on all health service commissioners and providers in England and Wales to work towards ensuring that specialist palliative care services are available for terminally ill people with complex needs and that generalist services can deliver care to meet the ordinary general palliative care needs of patients in the healthcare system as a whole. Such care should be available wherever the patient is. To that end, the Bill requires the development of positive palliative care strategies and annual reports on their achievement.

This is nothing new. Between 1987 and 1999, the Department of Health issued at least eight circulars or executive letters exhorting health authorities to develop palliative care strategies, but co-ordinated strategies have not happened across the board in 20 years. I have contacted all 10 strategic health authorities in England, but I have received very varying responses to my request for their strategies, drawing a blank on four of them. It is hardly surprising that the voluntary sector finds it difficult to plan and provide in partnership with the NHS.

What is palliative care and why is it defined as it is in the Bill? Palliative care provides care for patients with advanced, progressive, incurable illness to live as well as possible until they die of their disease. That covers advanced disease of any diagnosis, not just cancers, and it is not confined to only the last days, weeks or months of life. The definition in my Bill is taken from the guidance of the National Institute for Clinical Excellence in 2004 on improving supportive and palliative care for patients with cancer. It is equally applicable, however, to patients with other illnesses and to all ages, and it has been nationally accepted as the working definition. It states:

“Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount”.

Note that word “holistic”. It means that palliative care concerns the whole patient, not just a collection of symptoms. The NICE guidance was written to guide commissioning, based on evidence including costing data, and it is realistic. It recognises that in many medical conditions physical, psychosocial and spiritual factors are inextricably linked, so that it is necessary to look at the whole patient to be able to

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diagnose the real problem and plan the best management and treatment, often in conjunction with services such as oncology and surgery, which focus on disease control.

The noble Baroness, Lady Jay, sent me her apologies that she could not participate today. When she was a Minister at the Department of Health she said:

“The NHS has much to learn from the example of voluntary hospices, who promote both the physical and psychological well being of patients”.

She went on to say:

“Developing effective symptom control, openness, respect of the patient’s own wishes and the needs and care for the family are the cornerstones of palliative care”.

Indeed they are.

The NICE guidance states:

“Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments”.

That is particularly important, because it is here in the UK that clinical services have recognised that palliative care may be needed shortly after the time of diagnosis and, as I have said in previous debates, it is not simply a “death-bed science”. It helps all those with advanced, progressive, incurable illness to live as well as possible. For that reason, it is so important, and for that reason it has been a catalyst in driving up standards in many other branches of healthcare.

Recently, we had a debate about measuring the effectiveness of palliative care services that aim to relieve distress. There is much that can be measured. Since 1996, a national minimum data set has been developed and is being modified to meet the needs of the modern NHS. Validated tools are in routine use to monitor patient outcomes in all domains. The UK leads the world in producing those measures. They capture what is important to patients and families and help services to evaluate and audit their care. It is callous to suggest that such data should be ignored just because such assessment is difficult.

Palliative care does not get it right 100 per cent of the time, but neither does any other specialty. Could anyone realistically claim that diabetic care achieves 100 per cent effective control with no complications, or that every patient with hypertension has perfect blood pressure control? Such an attitude is unrealistic and allows neither for the vagaries of disease nor for the circumstances of the individual. It is through audit and reflective practice that lessons are learnt when things do not go right. It is through research that we improve care and discover better treatments. That is why my Bill requires that research should be facilitated, not hindered.

The relief of physical symptoms is the bedrock of the discipline and the focus of much research. That science has moved forward in leaps and bounds in recent years. This is a young specialty, with a rapidly developing evidence base. Year on year, there is a marked increase in scientific publications. A search for “palliative care” on PubMed brings more than 27,000 articles from peer-reviewed journals, with over one third of those published in 2006 alone. Research in palliative care, helped by this Government’s important initiatives, is improving the care of

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patients. For example, confusion with opioids and adverse drug effects are now rare as adjuvant analgesics have come along and techniques such as opioid rotation developed. Terminally ill patients are willing to participate in research, even though randomised control trials pose a challenge at the end of life. Some outcomes are as yet difficult to measure, but is that a just reason to abandon looking for them?

Symptom control is a science. Morphine and other drugs given appropriately at the end of life do not shorten life. I shall repeat that: morphine given appropriately does not shorten life, contrary to the misinformation on Radio 4 this morning. Morphine may even prolong life by ensuring that patients are comfortable and not exhausted through intractable symptoms.

Research is not confined to symptom control but encompasses much wider aspects of good care. Palliative care is one of the few specialties that are actively exploring the existential issues of loss of dignity and personal control, and support for the family. It has been championing privacy, has been at the forefront of ensuring that patients are listened to, that patients’ concerns are addressed and that they are given true choices over what can be done for them, including being asked where they would liked to be cared for and where they would like to die. Many aspects of this work are undertaken by specialist nurses and my Bill is strongly supported by the Royal College of Nursing.

Specialist palliative care is teaching the rest of healthcare staff what to do and how to do it better, aiming to raise the general level of palliative care provision across the health service. Specialist palliative care has never claimed that it should or could look after all patients who are dying. The specialist services are there to look after difficult and complex cases, to drive up standards, to research and above all to teach. Every patient encounter is a potential teaching opportunity and specialist palliative care teams view the education of their fellow professionals as a core duty.

The General Medical Council states that it welcomes the opportunity provided by this Bill for consideration of how palliative care services should be provided. It states that it feels that the debate is timely, because it plans,

“to review over the coming months the standards expected of medical graduates in order to gain entry to the medical profession and ... can ensure that the themes of this debate are included in this review”.

That is a major step forward. Licensing will require that those medical graduates know something about palliative care.

Specialist palliative care is the only healthcare service which has been developed outside the NHS, which is principally provided outside the NHS, and yet on which the NHS is very dependent. It has completely changed patient care. I do not make that claim lightly. Specialist palliative care services have been teaching communication skills, have challenged the way that pain relief and other symptoms are managed and have turned many practices on their

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head. People now, rightly, expect to receive analgesics such as morphine in adequate dose. Families expect adequate information when someone is very sick and dying, but, sadly, those standards are not embedded in all general services. Indeed, the recent Healthcare Commission report revealed that more than half of the complaints about hospitals concerned care around the time of a patient’s death, and a recurring theme in complaints was poor communication between staff and patients and their family.

The duty to provide palliative care to such an extent as is necessary to reach a patient’s reasonable requirements exists precisely because care must be underpinned by ensuring that respect for the person, their dignity and privacy are part of all aspects of care. The Bill stipulates “reasonable requirements” because need and demand are not synonymous. Services are not limitless—far from it—and the principle of justice dictates that each person should have the best care within the resources available and that there must be an equitable distribution of resources. “I want” does not mean “I get”, but needs that are properly assessed and identified must and should be met.

The Bill is supported by the National Council for Palliative Care and its partner organisations Help the Hospices, Marie Curie Cancer Care and Sue Ryder Care. The national council has been working with the Department of Health for many years and has undertaken a population-based needs assessment for palliative care in England and an in-depth review in Wales. It has been collecting minimum data on services and has estimated that 300,000 people per annum could benefit from specialist palliative care, but are not referred because their clinical service does not have links to such a service.

I bring this Bill before your Lordships more in sorrow than in anger. For more than 20 years, the whole of my consultant career, there have been executive letters to health authorities and to their successors instructing them to develop strategies at a local level for equitable care. In 2004, the NICE guidance, based on level-A evidence, the highest level, acknowledged palliative care as a mainstream standard for the NHS, but since then, palliative care has not become mainstreamed and specialist palliative care services do not know from one year to the next whether there will be a contract for their services or whether they will, in effect, be closed down.

I fully accept that sometimes resources need to be shifted, but I do not accept a shift that abandons the most vulnerable and distressed. A recent review of funding revealed that around 60 per cent of hospices were experiencing a real-terms decrease in funding contribution from the NHS. Only 20 per cent appeared to be maintaining or increasing the value of their NHS contribution and there appears to have been significant erosion of the value of the extra £50 million that the Government committed to services in England, with one unit experiencing a cut of £400,000.

Some patients do have complex needs—for example, those with motor neurone disease. The Motor Neurone Disease Association, which supports

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the aim of my Bill, feels that all patients with MND need specialist palliative care because of the complex nature of the disease. The British Heart Foundation welcomes the Bill, as does Marie Curie Cancer Care, which points out that most palliative care is provided by the usual professional carers of the patient and family. Indeed, most generalist services could look after most dying people well if the basic rudiments of such care were a national priority for commissioners, and if the generalist services can access specialist advice whenever they need it. My Bill aims to ensure that such an infrastructure is in place and it gives the Secretary of State or the Minister in Wales the power to make regulations should they need to, but I hope that they will not find this necessary because good palliative care saves not only distress but money as well.

Professor Mike Richards has done much to improve cancer services and he now leads the important end-of-life care strategy for the Department of Health. When this strategy has been fully developed I hope that it will not gather dust, as its predecessors have done; that would be a tragedy. My Bill is designed to ensure that commissioners and providers have to pay heed to a strategy and look at the way that dying patients are cared for in every service; they also need to recognise that specialist palliative care services can be small but that they point the way in raising standards. They are a cost-effective resource.

The cost-effectiveness of palliative care cannot be measured just in relation to the patient. There are opportunity-cost savings from futile interventions. Such costs are avoided by freeing up hospital beds by early discharge, by avoiding unnecessary hospital admissions through good anticipatory care and by decreasing morbidity in the bereaved by good care around the death. There is a shift from hi-tech to person-focused care. Based on current costs paid by the NHS, palliative care is the most cost-effective health service in the UK. But no care is cheap: the cheap option is no care.

We know that many patients wish to die at home and that in some parts of the country that wish is being realised through high-quality services. However, the number of hospital deaths has risen overall since 2002, and in 2004 the figure stood at 58 per cent of all deaths. Deaths in care homes seem to have fallen to about one in six in 2004 despite the same number of beds being in place in care homes. This trend has to be reversed. Strategy across all sectors of care needs to have some teeth. Currently, ignorance by staff and an inappropriate sense of defensive practice result in distressed patients being put in an ambulance and sent to emergency departments because their care has not been planned or properly co-ordinated.

We have a devolved healthcare service, where decisions are being taken at a local level. Directives from the centre are not the NHS of today. But that is precisely why a strategy at a local level must be in place and, given 20 years of non-implementation of the executive letters, my Bill is needed.

Moved, That the Bill be now read a second time.—(Baroness Finlay of Llandaff.)

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11.22 am

Lord MacKenzie of Culkein: My Lords, I warmly congratulate the noble Baroness, Lady Finlay of Llandaff, on introducing this very important Bill to the House.

I declare an interest first as a nurse, and secondly as a member of the All-Party Parliamentary Group on Motor Neurone Disease. In the days when I practised as a nurse, my specialty was operating theatres and trauma intensive care. I was fortunate during my general nurse training to work with and learn from a very talented charge nurse and an equally excellent staff nurse, who taught young students a great deal that was outside the then syllabus of training and included much about social and spiritual needs in care as well as the basic essentials of nursing care for the terminally ill.

One never forgets a good teacher or what they teach. In recent times, what has become known as palliative care has been reinforced for me by the very different treatment of two people I have known who lived with and then died from motor neurone disease. One had excellent support and care. For the other, the experience was a lesson in how awful and damaging poor communications within and between services and poor support can be both to the patient and to the family. I made reference to these cases in the recent Question for Short Debate on 31 January at col. 312.

For those reasons I am delighted to support the Bill. I hope that we are pushing at open doors when asking the Government to give it a favourable wind in its progress through this House and another place.

It has been the policy of both Conservative and Labour Governments for something like 20 years that palliative care should become a mainstream service. Although it is only right to acknowledge that some progress has been made, we are still a very long way from that happy situation. We are a long way from systematic planning and funding with the result that access to palliative care is more miss than hit. I think that it is correct to say that the majority of people who would benefit from such care are not getting it.

At present, almost 80 per cent of adult in-patient palliative care beds are provided by charitable hospices. I welcome the promise in my party’s most recent election manifesto to,

“double the investment going into palliative care”.

Obviously, less than half way through a Parliament, we have not yet met that commitment, but what now concerns me is that the gap between what is spent by hospices on NHS services and the contribution from the NHS is clearly widening. In a recent survey, the National Council for Palliative Care reported that 35 per cent of respondents have lost resources in the past year. The gap in funding for NHS services through hospices is now coming from local fundraising—charity shops, donations and legacies. So I believe it is not only timely but right that, in a rich developed country, we focus much more on end-of-life care. It is not something that a comprehensive National Health Service can or should stand aside from.

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I take MND as an example. We know that it is a ghastly and usually rapidly progressing fatal illness which can affect any of us at any time. Most people with the disease become completely paralysed and cannot talk or feed themselves, although the intellect is almost always completely unaffected. Three people die from motor neurone disease every day, but on average only one of them will have been referred to specialist palliative care. Such a state of affairs, as well as geographical gaps in the availability of specialist provision and in the quality of that provision, cannot be acceptable in the 21st century.

As the noble Baroness, Lady Finlay, said, an end-of-life strategy is to be published later this year. I do not know what the strategy will suggest but it will be surprising if it does not support choice for patients, regardless of diagnosis, about where they live and die, and provide the necessary care packages to make that possible. To be blunt, I hope that the prospect of that strategy will not be used as a reason for not giving the Bill a fair wind. If enacted, the Bill will complement whatever comes out of the new strategy and ensure that the concept of palliative care goes beyond the definition set out by NICE in 2004. While that definition is appropriate to all care, palliative care relates specifically to patients with malignancies. Unless there is a duty to provide palliative care for all who need it, we will continue to have patchy provision or no provision at all. When there are stresses on funding, as in the present climate, the focus will not be on end-of-life care unless an absolute requirement or duty is placed on health care commissioners to provide palliative care.

I welcome every one of the regulations set out in the Bill although I would like to see more emphasis in Clause 5(2)(f) on improving co-operation within the NHS and social services as well as between those organisations and the voluntary sector. It was, among other things, the complete failure of communication within local health services and between them and social services that led to the most appalling catalogue of failure that I referred to earlier.

There also needs to be a requirement to ensure the availability of specialist support which goes beyond providing care, treatment and psychological and spiritual support where there are complex care requirements such as in motor neurone disease. Unless specialist support is available, gaps in care will continue. It is important to ensure that palliative care professionals form part of any multidisciplinary team caring for people with conditions such as motor neurone disease.

I again most warmly congratulate the noble Baroness, Lady Finlay, and am delighted to support this important Bill. I look forward to following its progress in this House and another place.

11.29 am

Lord Patten: My Lords, I share the strong feelings of support expressed by the noble Lord, Lord MacKenzie of Culkein, for the excellent Bill of the noble Baroness, Lady Finlay. I wish it a fair wind in

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this House. I have no interests of any sort to declare. I have never known anyone who has experienced hospice or palliative care, and I have no medical expertise of any sort, no medical legal expertise and certainly no medical ethical expertise to offer your Lordships’ House, so I suppose that I speak as the average Peer in the street in support of the noble Baroness’s Bill.

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