Palliative Care Bill [HL]

– in the House of Lords on 23rd February 2007.

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Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Crossbench

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 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 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 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 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.)

Photo of Lord MacKenzie of Culkein Lord MacKenzie of Culkein Labour 11:22 am, 23rd February 2007

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.

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.

Photo of Lord Patten Lord Patten Conservative 11:29 am, 23rd February 2007

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 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.

The first thing that occurs to me is that there are gross inequalities in the provision of palliative care in England and Wales. One has only to look at the geography. It is reflected in the geography because the distribution of such services often seems randomly related to need. Secondly, there is also a considerable element of randomness in access to such services, for those with terminal illnesses other than cancer are grossly disadvantaged in their search for help—so much so that I think, to most people in England and Wales, the mention of "hospice" or "palliative care" equals "cancer care" for those who are dying of cancer. The fact is that only about one in 10 of those who get palliative care in a hospice or hospital is not suffering from cancer. So there is a geographical disequilibrium and there is also, I believe, a gross disequilibrium between different classes of patient suffering from different terminal diseases. The noble Baroness's Bill gives a clear road map for how this and other inequalities can be put right, and I congratulate her on that. It is very straightforward and easy to understand.

I expect that the Minister will say in his wind-up speech—I must not try to pre-empt that of course—that to pick on palliative care is to pick out one bit of the National Health Service and that that is very unfair because there are lots of other important bits of the NHS, and it is wrong to pick out one bit of partly publicly funded provision for special treatment, which is, in itself, inequitable. That argument simply does not run and I hope that he will not use it, for, in fact, more than half the funding for palliative and hospice care comes from voluntary and charitable endeavour and not from state provision. I believe that, in that sense, palliative care is unique within the National Health Service; it is different, and it is certainly different in the very high level of satisfaction that all patient satisfaction surveys have shown, with the great majority being very satisfied with the care that they get. So we are dealing with something very unusual within the National Health Service, and it is important that we stress that.

These duties need to be laid on Minister and commissioner alike to ensure greater equality of access and greater geographical fairness and also to make it clear that a disproportionate amount of what I think should be provided by the National Health Service is not dumped on charities and the voluntary sector in perpetuity. Perhaps I may give one example of how this is being played out now in London, not far from your Lordships' House. I refer to the Pembridge unit, which was set up not by a charity but by the NHS more than 15 years ago within St Mary's Hospital, Paddington. This unit has been threatened with closure. It used to have 17 beds; it now has 13—this in a densely populated area known for its problems of social exclusion with, I am told by one authoritative source, no fewer than 215 different languages and different dialects spoken by those who use the services of that hospital. That figure may not be right, but halve it and it is still a formidable number of different languages and dialects.

This year, the Pembridge unit has to raise £400,000 or shut. It has to raise £400,000 next year or shut. That could be the end of palliative care in St Mary's unless help is forthcoming. So I hope that the Minister and your Lordships do not feel that I am making wild generalisations from the Back Benches about the problems that NHS-founded units have within hospitals.

This sort of thing flies in the face of what I always thought was a politically bipartisan policy agreed by successive Governments over the past 20 years, as the noble Lord, Lord MacKenzie of Culkein, has just said in his excellent speech. Yet I think that now palliative care is too often marginalised; too often it has been sub-let to the voluntary sector and charitable bodies.

After some recent debates in this place during the Committee stage of the Mental Health Bill, which are ongoing and in which, with his characteristic courtesy and care, the Minister also took part, the General Medical Council wrote to me out of the blue, which was kind of it, and sent me a booklet called Good Medical Practice. It may startle your Lordships to know that I read it. Out of the page at paragraph 3(d) leapt the following instruction to doctors by the GMC. It said that all doctors must,

"take steps to alleviate pain and distress whether or not a cure may be possible".

I simply do not think that doctors in the NHS can do that because of the lack of proper provision for palliative care.

That point also highlights the need for good quality of life right to the end and for vigilance at both ends of the National Health Service spectrum of care. What do I mean by that? This is probably more a matter for other Bills and other discussions in your Lordships' House, but I mean that there is a paradox in that, at one end of the NHS spectrum, units, hospices and community carers are devotedly trying to help those in need who are facing a terminal illness and death. That is sometimes going on in the very same NHS hospitals or other facilities where, at least some would assert, there is increasing evidence that other people are not getting that help and that, indeed, their ends are being hastened by a covert nil-by-mouth strategy adopted by some clinicians and others to withdraw food and water. I do not know whether those allegations and assertions are true; I know only that it has been gone into in very great detail by a number of authoritative persons. One of our noble colleagues in your Lordships' House tells me that a dossier has been compiled with about 200 examples of such assertions and allegations concerning people who should be getting palliative care, not, in the end, death-inducing neglect.

This is a very important issue and it will not go away. I ask noble Lords to imagine the public outrage if, as a matter of public policy, we decided to put down unwanted dogs and cats by shutting them away in a room and taking all the water and food away from them. That would not be seen as acceptable. This is business for another day but it is a marker that I wish to put down for the Minister, because it is business that will be pursued in your Lordships' House.

Lastly, this Bill, when enacted, as I hope it will be, should help, not, as the noble Lord, Lord MacKenzie of Culkein, said, hinder the Government in ensuring that their new end-of-life care strategy is a success. I end my brief words with a request to the Minister. I know that he will be very busy in replying to the debate and that he will not be able to respond to many questions, but I should be extremely grateful if he could answer one question that I pose him in conclusion. I understand that, according to government announcements, the strategy is to be published in autumn 2007. Most of us know that timescales such as spring, summer, autumn and winter are very flexible in government parlance. Indeed, I fear that a form of administrative or governmental global warming might move the autumn season of 2007 inexorably deep into 2008. I should like to press the Minister to give a clear undertaking today that, by the end of the calendar year 2007—I am prepared to let autumn stretch that far—this strategy will be published.

Photo of Lord Lester of Herne Hill Lord Lester of Herne Hill Women & Equality, Cross-Portfolio and Non-Portfolio Responsibilities 11:40 am, 23rd February 2007

My Lords, as the noble Baroness has clearly explained, the Bill has the important aim of securing the provision of good palliative care to everyone with a terminal illness. The debate is timely, coming in the wake of the debate introduced by the noble Baroness, Lady Jay of Paddington, on 31 January on this subject.

This year is the 40th anniversary of the opening of St Christopher's Hospice. Led by its founder, Dame Cicely Saunders, it marked the start of a highly influential movement to improve end-of-life care world-wide.

Everyone in this House will surely support the aim underlying the Bill. As the Minister will explain, the Government clearly do so. They have increased funding for hospices significantly and support the NHS end-of- life-care programme. That programme's aim is to improve care for those patients and enable more patients to live and die in the place of their choice.

The principles of good palliative care were well stated by Help the Hospices, taking as its starting point the affirmation of death as a natural part of life. Built on that bedrock are the values of respect, choice, empowerment, holistic care and compassion. If there is to be a statute, its definition of good palliative care should encompass the philosophy of Help the Hospices and address some of the difficulties in the provision of medical treatment to relieve pain and suffering. It would also need to give effect to the Government's commitment to increase choice for all patients regardless of their condition within available resources, and to meet the treatment needs of the patient.

It is important to give effect in such a Bill to the rights of patients to personal autonomy and self-determination in their medical care and treatment. That right is enshrined in the principles on which the Mental Capacity Act 2005 is based. The draft code of practice, which was laid before Parliament yesterday, anchors that clearly. Palliative care is broadly defined in Clause 7 of the Bill as,

"care given with the intention of improving the quality of life of persons with a terminal illness by ... treatment which controls and relieves pain, distress, discomfort or other symptoms caused by, related to or coincidental with terminal illness, and ... psychological, social and spiritual help and support".

No reference is made in that definition to the wishes or choices of the patient. Palliative care must surely be grounded in the wishes and the consent of the patient. That goes to the heart of what good palliative care should be about. It is the patient rather than the medical team who experiences the pain, distress, discomfort or other suffering; and patients with mental capacity know whether the care they are receiving meets their needs. The statute would need to recognise patient autonomy to make clear that the provision of good palliative care must not be based on the outdated paternalistic model of the doctor deciding what is in the patient's best interests.

The other issue that I wish to raise is the vexed question of medical care and treatment for patients, where the relief of pain or suffering may have the likely or inevitable consequence of foreshortening life. The doctrine of double effect permits doctors to administer potentially lethal drugs, provided their intention is not to kill, but simply to relieve pain and suffering. Professor Seale published two reports in 2006 to assess the frequency of different end-of-life decisions in the United Kingdom and the degree to which patients' lives are shortened by end-of-life decisions. Based on a study of 857 doctors, he found that in one-third of deaths, patients were medicated to alleviate symptoms with a possibly life-shortening effect.

The Law Commission's 2006 consultation paper on a new homicide Act for England and Wales states:

"It is now an accepted part of common law that a doctor may lawfully prescribe such medication"— pain relief that may shorten life as a consequence—

"in such circumstances and, thereby, have a defence to a charge of murder".

But the principle of double effect does not sit well with the current formulation of intention and the law of homicide, and the absence of a proper legal framework and the risk of prosecution undoubtedly deters some doctors from treating their patients in accordance with those patients' wishes. The December 2005 trial of Dr Howard Martin, who was found not guilty of murdering his patients by administering high doses of morphine and diamorphine, demonstrated the practical problems in applying the principle of double effect.

Reasonable legal certainty is especially important where a patient is suffering from a terminal illness and facing the prospect of experiencing severe suffering and indignity. Patients have the right to life. They also have the right to personal autonomy and to live and die with dignity. They, their doctors and other healthcare professionals need to know what exception there is to the law of homicide enabling a doctor, acting in accordance with the patient's wishes, and the doctor's judgment as to the appropriate medical treatment, to administer that treatment, even though it is virtually certain that it will hasten the patient's death. Unless the criminal law and good medical practice are clear, conscientious doctors, seeking to act in the best interests of their patients, are left in a state of uncertainty—as are their patients.

Some things are clear. There is no doubt that the intentional taking of life, albeit at the patient's request or for a merciful motive, is unlawful. For a doctor to intervene actively to bring about a death is unlawful. Equally, a doctor who owes a duty of care to a patient and who withdraws or withholds treatment without lawful excuse commits an unlawful act. It is also clear that a competent adult has the right to consent to, or to decline medical treatment, even if the decision would result in the patient's death.

The problem with the existing state of the law is for the doctor or other healthcare professional to know what can lawfully be done to relieve pain or suffering towards the end of a patient's life without fear of prosecution. One problem concerns the relationship between intention and foresight in deciding whether a doctor has a criminal intent. In deciding whether there is the mental element necessary for murder, foresight of the consequences is usually evidence of the existence of a criminal intent. The greater the probability of death as a consequence, the more likely that it was foreseen, and the greater the probability that it was also intended.

As the noble Baroness, Lady Andrews, pointed out during the Second Reading debate on the Patients' Protection Bill,

"In criminal law, when juries are asked to consider 'intent' factors they may be asked to take into account the probability of the outcome and the extent to which that was appreciated by the defendant even if it were not their main intention. Therefore, if a doctor knew, as a virtual certainty, that withholding or withdrawing treatment"— or, I would add, giving treatment—

"even at the patient's request, would result in", or, I would add, would hasten,

"the patent's death, the doctor could still be held to have positively intended the patient's death".—[Hansard, 12/3/03; col. 1433.]

When a doctor acts in accordance with what she or he considers to be responsible medical practice, with the aim of relieving pain or severe distress but with the probable consequence of hastening the patient's death, the risk to the doctor is that the jury, as directed by the judge on currently declared legal principles, will impute the necessary specific intent to find the doctor guilty of culpable homicide, and the judge will have to impose a mandatory sentence of life imprisonment.

The humane theological doctrine of double effect attempts to provide a justification for administering drugs necessary for the relief of a patient's pain or severe distress in the knowledge that a probable consequence is the shortening of the patient's life. But the absence of a clearly prescribed legal framework and the risk of prosecution undoubtedly deter some doctors from treating their patients in accordance with the patient's wishes and the doctor's conscientious beliefs.

This uncertainty and confusion could be addressed if the definition of palliative care were widened to cover the giving of treatment, irrespective of whether it is likely to shorten life, while making clear, as does the Mental Capacity Act, that it is unlawful to give treatment with the motive of shortening life.

Photo of The Bishop of St Albans The Bishop of St Albans Bishop 11:49 am, 23rd February 2007

My Lords, I join everyone here in welcoming this profoundly important Bill and in congratulating the noble Baroness, Lady Finlay of Llandaff, on her far-sighted determination to create a Bill that has the potential to bring real care and comfort to the people of our country.

When I was a parish priest I had the privilege of being involved in the work of a local hospice. To be with patients, families and staff as individuals made their journey towards death was humbling and deeply moving. Years later, I can bring particular individuals to mind. I think, for example, of a very senior military figure dying in that hospice. Suddenly and unexpectedly, all his terrible experiences of the Second World War erupted. He was very perturbed. In that hospice, the provision of physical, emotional and spiritual care meant that he ultimately went to his death in peace. I think of an Austrian woman with no family whatever, who described the hospice as the best trade union she had ever belonged to, because she discovered a sense of human solidarity there—remember: no family, no relations, no one but herself.

Now that I am a Bishop, I have the privilege of being patron of a number of hospices in Hertfordshire and Bedfordshire. I witness palliative care of a high order in each, based upon a number of implicit and explicit beliefs. First, each human being has absolute worth and value, and must therefore be treated with compassion, respect and love. Secondly, dying can, paradoxically, be part of a healing process for the person who is dying and for their family. Thirdly, the attention given by society to the dying is usually a measure of how it treats the living. Fourthly, each individual's spiritual and religious needs should be accorded as much attention and care as their physical and emotional needs. I shall briefly concentrate on that last point.

It seems to me that every one of us, whether we practise a religious faith or not, has an indefinable but irreducible core for which the word "soul" is the most appropriate description. If we do not treat people's inner beings, their souls, seriously, we are failing to treat them with that respect and compassion which is the inalienable right of all human beings. For those of us with a religious faith, of course, our spirituality is shaped by and given expression through that faith, but when I use the word "soul" I refer to every human being whether they have a faith or not. Religion and spirituality are not necessarily the same.

If what I have said is true, it follows that we cannot talk of palliative care being adequate or good if it does not take seriously the spiritual and religious needs of each one of us. I join with others in welcoming the Government's creation of an end-of-life strategy group; though that seems the kind of title George Orwell would have given anything to create. In its initial remit and the make-up of the board, however—with the greatest respect to all its members—there seem to be some gaping holes. In defining its task, the strategy group uses almost exclusively mechanistic language. There is much talk of "levers". In Professor Richards's letter to his colleagues, just over a single side of A4, the word "lever" occurs no fewer than four times. It is of course accompanied by talk of "underpinning" and "delivery". I understand such language, but can someone please tell me why the word "spirituality" is not mentioned in a strategy devoted to improving palliative care? Language is always significant, and if we use only mechanistic language to shape our thinking about palliative care, we shall end up treating human beings like robots.

I hope I have not got this wrong, but I have been told that there is not a single member of the hospice movement in this end-of-life strategy group. The group, quite rightly, includes someone to ensure that racial equality issues are not overlooked. Can someone please explain why there is no one from the hospices? Why has that movement, which has thousands upon thousands of dedicated volunteers and totally devoted, experienced and professional palliative care personnel, been overlooked? I suppose I would say this, but if it is true, as I have said, that every single human being has a soul, why is there no representative from the fields of spirituality or religion? In common with other priests in this country, I have sat with dying people time after time. I have heard the confessions of the dying. I have taken hundreds of funerals. Does that have nothing to contribute to a group looking at end-of-life strategy?

The Bill is so important because it will deeply affect our entire nation. It is based implicitly upon the value and worth of every single human being, and implicitly desires for each one of us the best and most peaceful death. But it will be in the implementation of such a Bill that the real test of this proposed legislation will be found. We shall need to keep a careful eye on that implementation process, to see whether the dominant metaphor is of human beings as machines, or as living souls. I, no doubt along with everyone else here, warmly welcome the Bill. We have before us the opportunity to ensure the best palliative care pathway for everyone in our country, but its potential will be truly fulfilled only if the values implicit within it are made explicit in its application.

Photo of Lord Brennan Lord Brennan Labour 11:57 am, 23rd February 2007

My Lords, I agree with the right reverend Prelate about the importance of the Bill. I commend the noble Baroness, Lady Finlay, for introducing it to the House, because it provides a rare opportunity for us to note and act on the most unusual alignment of profound moral principle and serious political objectives.

The Bill's title, "Palliative Care", should be foremost in our thinking, in particular the word "care". I suspect that if we asked any person outside Parliament and government what were the most important aspects of their life over its passage, they would say the health of themselves and their family, and care when in need. That is a basic human desire, and the establishment of the National Health Service after the war provided, to the extent that it economically could, the means of trying to satisfy that need.

I hope that in the subsequent debate—and, I am sure, in the Minister's reply—we will not convert this into a question of economic necessity and availability of means, serious though those issues are. I propose to invite the House to consider the importance of the concept of palliative care, the commitment that it requires from us as legislators and its value to our society.

I shall start with the commitment that it requires. Human life is not to be treated like some socio-economic commodity, the value of which relates to age, utility, the cost of medical treatment or the available finances. It relates to none of them. When, after the war, my party introduced the National Health Service Act, it did so to reflect a concept of human dignity. That human dignity was reflected in helping another person in need. Over time, medicine has developed and palliative care, which the noble Baroness called a young part of the medical profession, has refined its skills. It illustrates that the human need—the legislative purpose of looking after the healthcare of our people—can always change, but will never end. I sincerely hope that human dignity is not forgotten, because the Bill seeks to meet a need for the terminally ill person and his family that is potentially desperate and agonising, when their dependence, which is nearly always acute, is on someone else. The extent of that commitment must be considered seriously.

Clause 7(b) includes a word that is rarely used in a legislative context, as the right reverend Prelate noted. In it, palliative care is defined as including,

"psychological, social and spiritual help and support".

"Psychological" and "social" are difficult concepts to meet analytically and financially, but they exist and are fundamental parts of medical treatment. "Spiritual" is not used religiously in this context; it refers to the relationship between one human being in need and other human beings who want to give care to the suffering person. That is a spiritual matter as well as a strictly medical one. It would be thinking overcome by intellectual hubris that did not recognise that spiritual context in palliative care. Why do I labour this point about the word? I do so because the intent of the Bill reflects the best values and moral principles of our society. In dealing with the extent of our commitment to palliative care, we must look at it holistically.

Lastly, what is the value—not simply the economic value—of palliative care to our society? Clause 1 is a declaration of principle. Nobody could enforce it by judicial review; it repeats Clause 1 of most of the National Health Service Acts. It declares a national intent to help those who are ill. In determining its value beyond that, we must be careful to avoid the following line of thinking: terminal illness leads to palliative care, which is not precisely definable in financial and medical terms, so we move to the utilitarian analysis of whether it is worth it and to the economic factor—it costs so much—and we are driven over time to the conclusion that it is simply an economic question, which it is not.

I think that the Bill is so important because those outside and those in my party who were little interested in the Licensing Act and were probably dismayed by the Gambling Act would certainly wake up to parliamentary action to look after them at their time of greatest need. It is the mark of a civilised society and, for my party, it is a mark of our commitment to our basic ideals.

Photo of Baroness Gardner of Parkes Baroness Gardner of Parkes Conservative 12:05 pm, 23rd February 2007

My Lords, it is appropriate that such an expert on palliative care has introduced this Bill, and I thank the noble Baroness.

Until last month, palliative care was of academic interest to me; it was something of which I approved but really knew little about. All that changed when my husband became critically ill and was admitted to hospital on 24 January. On 2 February, he was moved to intensive care, where he remained for five days. Then, when it was decided, on expert medical advice, by all the family, including him, that his very aggressive lymphoma was untreatable, he was disconnected from all but the basic oxygen and nutrition tubes and transferred to an ordinary bed.

It was then that the family met the palliative care specialist, a capable and sympathetic young woman called Caroline Stirling, and heard about how my husband could be made more comfortable and what treatment she proposed to continue for him. Had his prospects been long term, it was intended that he move home or to a hospice, but within a day it was clear that time was very short, and none of us wanted him to face the added trauma of a move anywhere. Family were with him when he died peacefully in the early morning of 11 February, just 12 days ago.

I particularly wish to speak today not only to pay tribute to Kevin, who was a wonderful husband for over 50 years, and to my children, who have been so supportive throughout this difficult time, but also to speak out for palliative care. It was an enormous comfort to us all to see Kevin so calm, peaceful and well cared for and to see him as a human being rather than as an inert figure swamped by vast numbers of tubes and artificial supports. His end was peaceful, and we can all wish to go in that way when our time comes.

Noble Lords might wonder how I am able to speak on this so soon—and so badly, I might add. It is because it is so soon. I am still in that state of disbelief where I cannot really believe that a loved one has gone for ever. My experience was of an acute and short-term situation. Not all conditions are so clearly defined, and many people with chronic illnesses live a very long time in suffering. Palliative care should be the right of all those in need of it, and I have no doubt that the Bill could help many people.

Cancer is considered to get the most supportive palliative care, and it is important that other terminal conditions should also be covered. Care at home means a great deal, and end-of-life care should become a mainstream service. We have all seen the figure that 64 per cent of people would prefer to die at home. That does not surprise me, as I am sure it is a natural feeling. However, I saw an interesting letter from a GP in a busy London practice, who wrote:

"Patients and relatives say that they want to die at home, but when it comes down to it dial 999 because as a society we have no experience of serious illness being looked after at home and relatives often have never seen anyone very ill and certainly have never seen anyone die (or even dead) ... For stroke patients or heart failure patients who have bounced in and out of casualty for years, they simply cannot see them go blue and stop breathing without summoning the ambulance ... Relatives/patients could not actually go through with it, even though very intensive doctor/nurse input at home was available. All of this has practical, clinical and ethical implications".

The GP also makes the important point that three-monthly meetings of palliative care teams are too infrequent for real care, but her calculation from other suggested schedules is that the local hospice team, which serves 50 practices, would need to attend 200 meetings a year, which would be equal to the loss of about 600 nurse practitioner hours of seeing patients. It is most important that this point be addressed.

The General Medical Council made some good points in making clear the need to ensure that,

"all doctors—not just those involved in cancer care—are aware of the nature and value of palliative care and the importance of early identification and referral of patients who might benefit from such support".

It is good, too, that the GMC makes clear the need to involve a patient in decisions about the type of care provided for them and to take account of their wishes about the appropriate place for receiving care. I stress that this should not be just a medical point; everyone would benefit from discussing the priorities and wishes of those dear to them long before any decisions need to be made.

The only certainty in life is death. This Bill will help.

Photo of Lord Carlile of Berriew Lord Carlile of Berriew Liberal Democrat 12:11 pm, 23rd February 2007

My Lords, I am sure that the whole House would wish to join me in expressing our deepest sympathy to the noble Baroness at her sad and recent loss. I am sure also that the House would agree that she spoke with great fortitude in the circumstances. That she was able to make so cogent a speech in those circumstances is no surprise to those of us who have heard her speak on many occasions; nevertheless, it was a remarkable occasion.

I join in congratulating the noble Baroness, Lady Finlay, on introducing this Bill, which I support very strongly. When thinking about the Bill I was struck by the contrast we make in the way we speak respectively about birth and death. I am obviously a child; I am also a parent and a grandparent. I have known the sadness of death in the family and the joys of many births, including those of five grandchildren, and I hope more to come. We talk about birth always in terms of joy—a good birth, a happy birth; we talk about the contrast between the pain of childbirth and the joy of the child arriving. In my view there are equal points of good practice, of even joy, to be made about death, but somehow we do not speak about these things as often as we should. The noble Baroness's Bill helps us to address these issues head on.

When my father died at a great age, we enjoyed—I use that term deliberately—as good a death-bed scene as one could imagine. He was dying of a painful cancer, but through the intervention of palliative care specialists, in which I include his general practitioner, we were able to face that death with a degree of pleasure. Indeed, I recall the last words he said to me. He was always of the view that I was very scruffy, and he and I being exactly the same size, his last words to me were, "Wear my black suit at the funeral". I wore his black suit when I read the reading at his funeral. One should be able to remember death in terms of joy like that whenever possible.

I want to make a point in a few moments about the doctor/patient relationship, which is important in dealing with the purpose and the structure behind the noble Baroness's Bill. The doctor/patient relationship is very different from the days when my father was a general practitioner in Burnley, Lancashire, where we lived in the surgery in which I was brought up. Of course I recognise that medicine is much more technological than it was in those days, and it is neither possible nor desirable to have the same doctor/patient relationship as there was then, because so much more can be done for patients than simply enabling them to talk to a sympathetic general practitioner. Nevertheless, there are issues about that relationship that are relevant to this Bill, to which I will turn in a few moments.

Specialists such as the noble Baroness, Lady Finlay, who is most distinguished in this field, have done a great deal to bring the United Kingdom to the forefront of the possibilities, if not always the practice, of best palliative care. I applaud the Government's manifesto commitment to double the investment in palliative care. Help the Hospices says in its briefing for this debate, however, that,

"the gap between what hospices spend on NHS services and what the NHS contributes is estimated at £150-£200 million and is widening. Most hospices are suffering a real terms cut in their funding, leaving many hospices reliant on local fundraising" to provide what we should regard as essential services.

There are pressures from elsewhere. My noble friend Lord Roberts of Llandudno—a Methodist minister with some expertise, he tells me, in matters relating to gambling—has drawn to my attention this morning a real issue arising from the Gambling Act. Many hospices that run lotteries and take contributions by telephone and on the internet now have to stump up substantial licensing fees, which bring the very viability of those lotteries into question. Sometimes we know not quite what we do when we introduce yet more regulation. I invite the Government to look at that issue facing hospices and similar organisations to see whether four-figure licensing fees are really necessary.

I am concerned about inconsistent commissioning practices. Primary care trusts can decide with little or no warning to reduce commissioning levels or funding. That results in unexpected and unpredictable pressure on charitable income and causes considerable difficulties for the trustees of hospices.

I shall now make my doctor/patient relationship point. A few years ago the Welsh Assembly Government granted me the privilege of writing a report on the safety of children in the National Health Service in Wales, Too Serious a Thing, in which I was assisted by many medical experts. The preparation of that report gave me the opportunity to look at the NHS in every aspect as it affected children—the optician, the school nurse, the general practice, the accident and emergency unit, the hospice, child and adolescent mental health services, and every other part of the NHS operating in Wales. The basic observation I made as I sat down to write that report was that there were patients and there were providers of services—the NHS, for the most part—but there was not much relationship between the two.

I am one of those old-fashioned Liberal Democrats who believes in the principle of duty: that the state has duties and that equally citizens have duties. We cannot expect the state to work on our behalf if we do not do our bit as partners in the state in which we live. That seems to me the essence of a liberal democracy.

As it happens I went to my general practitioner this morning with a minor ailment. I was able to be seen very quickly; I was prescribed; I went to a chemist; I collected the drugs; and, as it happens, I applied them in the gentlemen's lavatory on the first floor West Front when I arrived here to speak in the noble Baroness's debate—that is perhaps more detail than your Lordships need. It struck me as I was going through this process, which is very real to me today, that although my general practitioner could not have been more helpful, I was not really a stakeholder in any contractual sense in my relationship over that minor ailment with the National Health Service.

I return to something I mentioned earlier; it is what I called the principle of duty—that is not my phrase; it is used very skilfully in a seminal work by David Selbourne. If I have a compact with the National Health Service and the National Health Service has a compact with me, if there is a quasi-contractual relationship between the citizen and the state, it all becomes much more meaningful.

In my view, the framework of the Bill could well be replicated elsewhere. It makes the patient and the state stakeholders; it makes them contracting parties. It means that there are rights—this will trouble the Government—that can be enforced. Surely, when we pay our taxes for the huge National Health Service, we should be able to enforce those rights in roughly the same way as when we go for private medical treatment. The Bill contains a useful framework that could be replicated in many parts of the health and other public services. It is right that such relationships should exist and should be fostered by legislation.

Photo of Baroness Greengross Baroness Greengross Crossbench 12:21 pm, 23rd February 2007

My Lords, when I had four very young children, I had a close friend and neighbour who was about the same age as me, in her late 20s or early 30s, who had a second child and then contracted the sort of fast-advancing cancer that can attack young women soon after they have babies. I was deeply shocked. I was very fond of her and we were close friends. She spent the last few weeks of her life in a hospice and we spoke on the phone most days. She told me repeatedly that her last weeks—the time in the hospice—were a very beautiful experience for her and for her young doctor husband. I never forgot that, as I shall not forget the speech that the noble Baroness, Lady Gardner, just made. You do not forget things like that and we are deeply moved. I thank her very much for talking to us in that way.

Perhaps I may say how much I support the Bill and its aims. I have a total commitment to and belief in the value of good palliative care, as exemplified by the work of my noble friend Lady Finlay, whom I hold in the highest regard. As a result of many years of work with older people, I became extremely concerned at the lack of good care that so many people experience at the end of their lives—those who are denied palliative care at its best. I pay tribute to the many people, professionals and others, who provide such care to dying people, sometimes in very difficult circumstances and I congratulate the Government on increasing the level of funding available for palliative care. Having said that, I am sure that we all agree that there remains much work to be done and a great need for additional resources if we are to get the provision right.

We must ensure that there is greater availability of palliative care to a much broader range of people, often with complex conditions that require specialist attention. It has been heartening to see palliative care start to engage with the challenges of neurological conditions, in particular. I make a special plea for the Government to help to improve the care given to people suffering from dementia. By the time that someone suffering from dementia is admitted to continuing care, they are likely to be within the last two years of their life. Their needs are physical, emotional, psychological and spiritual. Like all Members of the House, I was moved by the speech made by the right reverend Prelate, on which I congratulate him. Much of what has been said today is unforgettable. Much more needs to be done to ensure that the care given to people with dementia meets all those needs. I know that my noble friend Lady Murphy, who is unfortunately unable to attend today's Second Reading, feels strongly about that and shares my view of the priority that must be given to people suffering from dementia.

I turn my attention to patient choice. My noble friend Lady Finlay emphasised that that is an important concern, especially as the person reaches the very last stages of life. There is now a more general acceptance of the holistic approach that is needed to the subject of dying, which recognises the process of dying as a life stage for which, like any other, we need to prepare if we can and over which we should be able to exercise as much choice and autonomy as possible. The Government have recognised the importance of choice, dignity and other factors both in their Dignity in Care campaign and in their emerging end-of-life care strategy.

The key to helping every individual to achieve the kind of death they long for is to recognise him or her as an individual with individual requirements and needs. Two people may be dying from the same condition but may well experience it in different ways, both physically and mentally. Consequently, they will make different choices about how they want to live their final months, weeks, days or hours. One person may want to die at home; another would find it reassuring to be in hospital. One may want to try every last treatment option available; the other may tire of medical interventions. One person may suffer greatly because she is unusually sensitive to the medication that her symptoms require; the other may experience less pain but find it distressing to receive care from a young person of the opposite sex. Two people may wish to spend the time they have remaining in very different ways and consequently want very different things from palliative care.

If we do not achieve as much choice as possible in the process, we will fail the dying. Palliative care should therefore be rooted in the wishes of the patient. For that reason it is important that the principle of patient choice is built into my noble friend's Bill to ensure that the Bill and palliative care take the individual patient's needs and wishes as their starting point and protect the discipline against any charge of paternalism.

We all recognise that palliative care is not provided exclusively in a hospice setting. Figures from the ONS tell us that most people die not there, but in hospitals or at home, including in care homes. The majority of our population wish to die at home, the next preference being in a hospice. Much more needs to be done to extend excellent palliative care into all settings and across the NHS, as stated in the Bill. Even in the most up-to-date and best equipped hospital, staff may not be able to devote the time, space and attention that a dying person deserves. I should like the best features of hospice provision included somewhere in all hospital premises, so that the terminally ill patient can have the best of both worlds: an appropriate setting with privacy, time for family and friends to be together in comfort; and first-rate medical support close at hand. Although only a small number of people die from a recognised terminal illness in care homes, they may face inadequate treatment due to the lack of appropriately trained staff or they may be transferred to a hospital for the final stage of their lives, perhaps against their wishes. Neither is acceptable.

Ultimately, palliative care is about good care and the relief of suffering, but we know that there are circumstances in which some dying patients still experience considerable suffering, which even excellent palliative care does not relieve. I know that that is true of only a small minority.

The noble Lord, Lord Lester, spoke eloquently about the need to respect the autonomy and choice of people at the end of life and the need for clarification of the law to ensure that people have, and know that they will have, adequate care and pain relief wherever they are. Doctors need to know that they are not at risk of being prosecuted for employing what we believe to be good practice. The noble Lord, Lord McColl, whom I admire enormously for his work, noted in last month's debate that there is a problem here because doctors are wary of giving analgesics, especially when there is respiratory distress. We want to clarify what doctors can and cannot do. Perhaps that could usefully be explored in Committee.

Palliative care is the last opportunity we have to treat and care for a person at a stage when their dignity must be maintained and cherished to the end. This Bill will go a long way to ensure that that happens. It deserves our wholehearted support and that of Her Majesty's Government.

Photo of Lord Colwyn Lord Colwyn Conservative 12:30 pm, 23rd February 2007

My Lords, I thank the noble Baroness, Lady Finlay, for introducing this Bill. Patients who are dying should have access to the same attention and standard of healthcare as all other patients. This access should be provided equitably to all groups in society. That was made clear in the powerful and emotional speech of my noble friend Lady Gardner, which, I, too, will remember. Most speakers so far have supported the Bill. I support the aims of the Bill but suspect that the Government will be reluctant to accept legislation on the provision of specific services. The General Medical Council supports the aim of ensuring that adult patients nearing the end of their lives should have access to high quality palliative care, both in hospital and in community settings, regardless of their diagnosis.

Thirteen years ago, I was a member of the House of Lords Select Committee on Medical Ethics, which was appointed to consider the ethical, legal and clinical implications of a person's right to withhold consent to life-prolonging treatment and the position of persons who were no longer able to give or withhold consent. One of the many conclusions that we reached was that resources for healthcare are not and can never be infinite. Healthcare teams should not be required to make decisions relating to resources in the course of day-to-day clinical care of individual patients. Their concerns should be for that individual's welfare. Decisions about treatments which society can or cannot afford should be made elsewhere than in the hospital ward or doctor's consulting room on the basis that such treatments as society wishes to fund must be made available equally to all who can benefit from them.

We recommended that high quality palliative care should be made more widely available and that research into new and improved methods of pain relief and symptom control should be supported. The training of healthcare professionals should do more to prepare them for the difficult ethical responsibilities which they carry by giving more priority to ethics, counselling and communication skills.

Many members of the committee believed that a solution to euthanasia was a development and widening of the hospice service. We visited different hospices and were tremendously impressed with the facilities for and the treatment of patients. Although in 1994 there were nearly 200 centres working with many more community and home-care teams, it was suggested that hospice care was not available to the vast majority of dying patients.

The committee thought that there should be further research into pain relief and symptom control so that the standard of palliative medicine that many of us had seen should be available in hospitals and the community throughout the country. The Conservative Government's response to this part of the report was described as timid and, although stating a determination to see good quality care, the Minister declined to recommend any increased funding for palliative services.

In his reply to the recent debate on 31 January, the noble Lord, Lord Hunt, accepted the points made about the need to expand palliative care and indicated that the new end-of-life care strategy under the leadership of Professor Mike Richards would set a framework and would ensure that good quality palliative care is more widely available. I look forward to his comments on the membership of that group, as pointed out by the right reverend Prelate.

As advances in medical science lead to new technology and drugs, decisions about life and death become more complex. The ability to prolong life can now subject the terminally ill to a dependence on technology which is stressful for patients, their families and healthcare professionals. Misconceptions among medical staff can lead to under-treatment and a hesitancy about providing the necessary degree of pain relief for fear of drug tolerance or shortening the patient's life.

I am grateful for the briefings that I have received from various organisations—the National Council for Palliative Care, Help the Hospices and the General Medical Council, to name but three. They all support the noble Baroness's initiative, believing that the Bill will strengthen and extend the provision of palliative care. The GMC welcomes the Bill as it coincides with its published guidance, Good Medical Practice, and its planned review of standards expected of medical graduates in order to gain entry to the medical profession. As the noble Baroness, Lady Finlay, has said, it has promised to ensure that the themes of this debate are included in the review.

My noble friend Lord Patten suggested that most of the changes in developing palliative care have been in relation to cancer, but of course it applies to those with other conditions. Non-malignant diseases, including circulatory, respiratory, neurological and dementia are responsible for many more deaths. Palliative care should be developed for all those who need it, including all terminal illnesses. It is still not a mainstream service and inequities persist. I hope that this Bill, or perhaps the discussion we have on this Bill, will be part of the development process.

Photo of Baroness Masham of Ilton Baroness Masham of Ilton Crossbench 12:35 pm, 23rd February 2007

My Lords, I thank my noble friend Lady Finlay of Llandaff for this humane and necessary Bill. Why do I think it is necessary? The services of palliative care throughout the country seem to be very patchy. I know that from personal experience. My husband died 11 months ago, having lived for many years with several different medical conditions, which were the result of strokes, diabetes and Parkinson's disease. He had a bleed in his head from too much Warfarin. A thrombosis developed in hospital: he was discharged with it and then had to be admitted to another hospital as an emergency. He got cellulitis. Later on he also developed a cancerous tumour that resulted in an open wound which had to be dressed twice a day. I am pleased to say that treatment with Warfarin has thankfully improved from the early days and is now monitored regularly, I hope, for everyone who needs it.

Over the years, we had many dramas, some excellent medical treatment and some which could have been better. But in the last few months of my husband's life, I was extremely grateful for good advice from my noble friend about palliative care. As a professor of palliative care, the noble Baroness, Lady Finlay of Llandaff, is the ideal person to introduce such a Bill to your Lordships' House. Already this Bill has engendered a great amount of interest from the GMC to many voluntary bodies, which is excellent. Perhaps everyone speaking in this debate should declare an interest. One never knows when any of your Lordships or I may find ourselves at the receiving end of palliative care.

The weekend my husband died I had to rely on the out-of-hours doctor services. As my husband's condition deteriorated and he was running a temperature, on that Sunday I had to wait three hours for the doctor to telephone back. When she did, she offered no help; only to say that she was unable to find a physiotherapist to help with his breathing. As she was 24 miles away, she did not bother to come out. Because of the risk of hospital infection, the GPs thought that it was better for my husband to be at home, but the community could not offer the assistance that he needed on that last Sunday. The next doctor to whom I spoke sent an ambulance and we took my husband to hospital, with all the drama that that involved. He died of pneumonia while still in the accident and emergency department, without doctors being able to access his notes because they were in the GP surgery and the other local hospital—and it was a Sunday. As it was classified as a "sudden death", the police were involved. This is why I find the Bill so important.

I am told that there is a voluntary gold-standard scheme for GPs which includes a quality framework for palliative care, planning for the patient's end of life, in which the patient and his or her family are involved, and the out-of-hours doctor service being informed of people in a palliative care state in their area. Will my noble friend encourage this service throughout the country? I believe that such a scheme exists in Cambridge. Perhaps one day it will reach North Yorkshire.

I am pleased that the Bill has already brought items of good practice to the notice of some of us. I am glad that the General Medical Council has stated that it supports the aim of ensuring that adult patients nearing the end of their lives should have access to high quality palliative care, both in hospital and community settings, regardless of their diagnosis. It also agrees that it is important that access to such services should be provided to all groups in society. I hope that these services will include out-of-hours doctors because so many things happen at weekends and during the night.

I am also pleased that the GMC welcomes the opportunity provided by the Bill for further consultation on how palliative care services should be provided. 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. It can ensure that the themes of this debate are included in this review.

I hope it will also include the specialist needs of patients with swallowing problems, such as those with Parkinson's disease and motor neurone disease, and patients who are vulnerable to pressure sores, such as those with spinal injuries. However basic the needs, they should be included in high standards of medical education.

Cases such as the 86 year-old diabetic lady who died in Doncaster Royal Infirmary when she developed leg ulcers after a gall bladder operation last July should be avoided at all costs. It was discovered that ulcer wounds on her legs had become infested with maggots when she was being treated on a ward. Her hospital post-mortem examination reported that she had died of old age, but her family were so unhappy with the findings that they made a formal complaint of criminal negligence to the coroner. The police were called and, in a second examination by the Home Office pathologist, it was found that blood poisoning primarily contributed to her death. The lady's daughter is a nurse and she condemned the appalling standards of care. Vulnerable patients need particularly good care and there should be no cover-up when things go wrong.

People in the last stages of their lives receiving palliative care may be immuno-compromised for many different reasons. Transplant patients and patients receiving drugs for cancer, HIV or liver disease, as well as people with long-term disabilities, are very much at risk—and many have died—from the dangerous infection Clostridium difficile, now rife in many hospitals and care homes. It causes debilitating liquid diarrhoea. This week I was shown by the company ConvaTec an interesting faecal management system—Flexi-Seal FMS—which collects liquid faecal matter from unfortunate patients should they contract C. difficile. If any of your Lordships are interested in seeing this device, I have one in my office. It is hopeful that companies are trying to help patients and staff in these difficult and unpleasant circumstances. The device will save changing a bed many times a day.

I would like to ask the Minister this question: what guidelines or protocols are there for the NHS in the treatment of infection-related faecal incontinence—for example, C. difficile? I stress how important it is for patients receiving palliative care in their own homes to have their wound, stoma care, urology and incontinence products delivered. Thousands of patients depend on this service and the companies provide support to patients, carers and clinical nurse specialists in stoma care, urology and continence. I hope this service will continue. It is under consultation at the moment, having been extended until 2 April.

The Bill seeks to facilitate the spread of best practice and to drive up standards. It would seem incredible if anyone disagreed with these aims. It is an appropriate time to discuss the Bill, just two days after Ash Wednesday. Good palliative care should also include spiritual support when it is wanted. Very often people who have lapsed want to come back to it at the last stage of life.

Good care is not expensive but bad care can be very expensive as there can be all kinds of breakdowns in many directions. I wish the Bill a speedy, successful journey through your Lordships' House. It has been a privilege to take part and share in the debate today.

Photo of Baroness Howe of Idlicote Baroness Howe of Idlicote Crossbench 12:48 pm, 23rd February 2007

My Lords, it is a privilege to follow my noble friend Lady Masham of Ilton and to take part in this remarkable and moving debate on the Bill of my noble friend Lady Finlay of Llandaff. I pay tribute to the many memorable speeches we have heard today, in particular that of the noble Baroness, Lady Gardner of Parkes.

My noble friend Lady Finlay of Llandaff has achieved a huge amount already in promoting palliative care. Her introduction of the Bill is an important—indeed, essential—step in ensuring that the topic is very firmly placed at the top of the nation's healthcare agenda. It is a most welcome reinforcement of the Government's recent thinking on the end-of-life care strategy.

No one, of course, is surprised that this service, like so many other philanthropic good causes, began with voluntary charitable work. Palliative care and the hospice movement generally have remained largely dependent on the voluntary and charitable sectors for fund-raising and for mobilising the human resources, skills and training needed to tackle the task.

One wonders why so much started by the voluntary and charitable sectors has become the responsibility of the state. I believe that there are two explanations. The first, which is undoubtedly true, is that the expertise developed by organisations such as Marie Curie and Macmillan Cancer Support have so qualified them that, with quite modest backing from the public purse, they are uniquely well qualified to deliver this increasingly community-valued end-of life service.

The second explanation is of a rather different kind, and follows in a way the comments made by the noble Lord, Lord Carlile: it is the impact of what I believe is a developing change in the balance of public perception. We have long celebrated, both in families and as a nation, the birth of every baby—his or her start of life. Medical investment in that has been enormous. So, too, have we applauded every improvement in infant mortality rates. But until recently, at least, the circumstances of that same baby's end of life has not been seen by successive Governments—nor, to be fair, by the rest of us—as having anything like the same importance. We fail to value or celebrate his or her contribution to family, the community or indeed the economy. Bluntly, those facing end of life have not been a priority for government spending.

People carry the scars from bad care they have witnessed for the rest of their life. We have heard some appalling examples of that this morning. It is unsurprising that there has been a reluctance to think, let alone talk, about when—still less, how—one's death will happen. The most, perhaps, that we have all hoped for until recently has been for a quick, sudden death. Now, however, more and more people are seeing, many of us within our own circle of family and friends, that with palliative care expertise the end of life, though inevitably sad, can be positively reassuring for all involved.

I mentioned one such family's experience when last I spoke on this issue. That same family today is still talking about the comfort and enrichment that that whole experience gave them. That is why this Bill is such an important pointer to a future that is better balanced between birth and death, for there are still far too many circumstances in which palliative care is just not available, and too many communities, towns and even districts where it is barely available at all. We should prefer to die in our own home; we have heard that reinforced. Marie Curie's 64 per cent is a striking percentage.

The crucial requirement, I argue, as your Lordships have done before me, is for all those who are involved in the provision of end-of-life healthcare to have access to resources that will allow them to establish partnership or other arrangements that will secure the best provision of the best possible palliative care. The Bill addresses just that need. Unless the state provides the necessary funding, the palliative care postcode lottery will continue. That means, as usual, that the most deprived areas are the least likely to have the excellent arrangements that we, for example, enjoy in south Warwickshire. Quite apart from the availability of at least three local hospices, we have a well spread, widely supported voluntary organisation, Shipston Home Nursing. Two key features of that are that the chairman is a senior partner in the local GP medical centre, and that there remains open nearby a small local National Health Service hospital from which the combined half-voluntary, half-public seven-day service is organised.

That is the kind of standard we should be seeking to achieve elsewhere—everywhere—not just because patients are getting a more appropriate, personal and choice-based service; Shipston Home Nursing is also making a substantial saving for the National Health Service. One patient being cared for at home last Christmas saved the cost of one month in a hospital bed—about £15,000.

The follow-up document, published in October 2006, to the Government's White Paper illustrates some of the other encouraging pilots and partnerships already under way, which will spread knowledge of, and training for and in, palliative methods. It is especially encouraging to read of Marie Curie's Delivering Choice programmes in Lincolnshire, Tayside and Leeds. All those are steps in the right direction, arising from a growing conviction that the palliative care approach is the right one for all older people at the end of a long life. Arrangements of this kind are already demonstrating that, by providing a rapid-response range of services for those at home, a considerable saving in hospital admissions is achieved. There is a long way to go on that, however, and there are many circumstances in which people will call an ambulance because they are so concerned and unsettled by what they see in a loved one, as my noble friend Lady Masham pointed out.

The saving as far as hospital beds are concerned is a claim that all palliative care enthusiasts have made for some time. The research by Professor David Taylor and Sarah Carter suggests that for every £1 extra invested in community palliative care, £2 is released to the acute hospital sector.

Even against that background, the Government's commitment to provide £50 million towards refurbishment of hospices, although of course welcome, will not be remotely enough to ensure that adequate resources, facilities and training for palliative care staff are available throughout England and Wales. That is exactly why my noble friend's Bill is essential, if anything like the Government's own plans for palliative care are to be achieved. I join others in hoping that your Lordships will be hearing from the Minister today that the Government will indeed support the Bill.

Photo of Viscount Bridgeman Viscount Bridgeman Deputy Chief Whip, Whips, Shadow Minister, Home Affairs, Shadow Minister, Northern Ireland 12:57 pm, 23rd February 2007

My Lords, I join other noble Lords in congratulating the noble Baroness, Lady Finlay, on introducing the Bill, which has met with such a warm welcome right across the palliative care profession, and which has been so eloquently praised by many of your Lordships today. We are also grateful to my noble friend Lady Gardner of Parkes and the noble Baroness, Lady Masham of Ilton, for their courage and, indeed, for the service that they have done this House by sharing with us their experiences of the last days of their husbands.

I return to the matter of funding, about which I spoke briefly in the debate introduced by the noble Baroness, Lady Jay, on 31 January. I declare an interest as chairman of St John's Hospice in St John's Wood in London. That hospice is in the voluntary sector. It is likely that the voluntary sector will be increasingly relied on by the National Health Service, at the very least to maintain its existing place in the palliative care movement; indeed, as pressures on funding from the Department of Health rise, the voluntary sector will probably play an increasing role in it. My case rests on the eloquent explanation of the role of the voluntary sector by the noble Baroness, Lady Finlay.

As your Lordships will be well aware, the voluntary hospices recover a maximum of 50 per cent of their costs from the Department of Health. In many cases, the recovery is considerably below that figure. Bear in mind that the majority of voluntary hospices do not enjoy the support of parent charities, as we are fortunate to do—in our case, the Hospital of St John and St Elizabeth. For those charities, it is a real and increasing struggle. The only way to make good the shortfall is by fundraising, and it is becoming an increasingly tough business.

An interesting published statistic that I discovered only recently is that, overall in the country, a general practice has only eight patients per annum who need palliative care. All of us involved in the industry know how the relatives of a palliative care patient get tied in emotionally to the hospice, and we are so grateful for the volunteers, particularly in day centres and so on, who give their services so freely. But a remarkably small proportion of the population has the need for palliative care and the facilities that we are talking about, unlike the situation with some of the major charities dealing with complaints such as cancer; for those charities, the appeal is much wider.

In its bulletin The Funding Reality for 2006/07, published in November,the National Council for Palliative Care sent out a questionnaire to its voluntary sector members on the state of their funding negotiations with the National Health Service. Twenty per cent had not been able to reach final agreement on the National Health Service contribution for 2006-07, principally because of planned reorganisation of primary care trusts. Twenty per cent had received an uplift of at least 3 per cent, including their allocation from the £50 million pot. However, 50 per cent had received an inflation uplift of less than 3 per cent, and in half of those cases the increase was less than 2 per cent.

Across the board, 16 per cent of respondents reported difficulties in maintaining their allocation from the £50 million pot, either in whole or in part. It had been completely removed, cut back, held back or there was simply no uplift.

The overall differential between the funding of the voluntary sector and National Health Service units was 1 per cent last year. This year, it is likely to be in the region of 0.5 per cent. These figures may not sound much, but in the realities of the costs in the hospice movement, they are significant.

Why should there be any differential at all? In referring to the voluntary sector, the NCPC bulletin stated that very few service cuts were identified. In other words, the voluntary sector hospices are, I surmise, simply getting down to it and getting on with their dedicated mission. Before this debate, I promised the Minister that I would not repeat my accusation of cynicism on the part of the Government. But is it possible that they are taking advantage of this commitment to maintain services in the face of significant funding difficulties?

Those of us associated with the voluntary hospice movement have every sympathy with the financial problems faced by hospice units within the National Health Service—indeed, we work very closely with them. My noble friend Lord Patten may be interested to know that I spoke to our hospice director this morning and in her office was seated the director of the Pembridge clinic. That shows the degree of co-operation between hospices in localities.

I feel strongly that, with the huge dependence on the voluntary sector for palliative care, which, as I said, I predict will increase rather than decrease, the uplift contribution should be the same for both sectors. I hope that the Minister will be able to give some reassurance on this subject, which I hope to pursue in Committee.

Photo of Baroness O'Neill of Bengarve Baroness O'Neill of Bengarve Crossbench 1:03 pm, 23rd February 2007

My Lords, like other noble Lords, I feel a great debt to my noble friend Lady Finlay of Llandaff for introducing this important Bill. As many points have already been made, I shall be very brief.

I believe that the crucial term in the Bill is "strategy"—this is about a strategy for palliative care. A strategy will have more fundamental and less fundamental parts. I entirely share the objective of palliative care that provides for the social, emotional and spiritual needs of each person as he or she is dying, but in all of this one of the great triumphs of the hospice movement has been to attend to pain relief. I believe that this has a certain strategic priority because it makes it easier to attend to all the other things that the dying person may need.

We have heard some hard experiences, and I am going to tell your Lordships one more. My brother was a very well organised man and, when he knew he was dying, he made contact with the local hospice and the local nursing home. He visited both and knew what was available. When he decided—and it was his decision—that we were no longer able to look after him at home, which was true, he asked me to ring the hospice. It said that there were six people ahead of him before there would be a bed available. That meant that six people would have to die. I knew that my brother had waited until the last moment and that he could not wait for that, so his GP got him into the nursing home. The staff there, together with the local vicar, were splendid at giving emotional, social and spiritual care but they did not have the authority to prescribe additional drugs, and it was Christmas weekend. As Christmas Day and Boxing Day—your Lordships will remember that it was the day of the tsunami—went by, I began to long for him to die soon because it was not possible to give him the pain care to which he was entitled, which he needed and of which those running the nursing home had full experience; but, in the wake of the Shipman inquiry, they did not have the authority, without the say-so of people they could not reach, to increase the amount of morphine.

Photo of Lord Cavendish of Furness Lord Cavendish of Furness Conservative 1:05 pm, 23rd February 2007

My Lords, it is with real pleasure that I support the Bill, introduced with such eloquence and authority by the noble Baroness, Lady Finlay of Llandaff. It would be hard to exaggerate the contribution that she has made in this field. She combines the hard-headed approach of a distinguished scientist with the humanity that comes of a penetrating understanding of human suffering. It is a combination that I welcome, especially as there appears to some of us to have existed in recent months a trend for the end-of-life debate to pit the scientific approach against the humanitarian one, when I think that most reasonable people believe that it should draw on both.

As on previous occasions, I need to declare my personal interest in the Bill. I was one of the founders of St Mary's Hospice in Ulverston, south-west Cumbria, in the late 1980s; I have been continuously involved with the organisation ever since and am currently chairman.

I have regaled your Lordships on the problems we have faced at St Mary's through our gross underfunding and through the failure on the part of the then PCT to understand what the hospice was about or to deal fairly with us. Although there remains very little improvement on the very low 10 per cent funding we have historically received from the Government, I have grounds for mild optimism, and that optimism grows stronger with the introduction of the Bill.

Echoing my noble friend Lord Bridgeman, I say that at 10 per cent funding in an area such as mine, it has been a very painful operation to keep going, and it is completely unsustainable. I cannot ask local people to contribute 90 per cent for this sort of operation.

This measure seeks to enshrine in law what has in effect been the policy of successive Governments for the past 20 years or more. Apart from providing a statutory framework to ensure that palliative care becomes a mainstream service, it provides for its effective delivery for all who need it. In addition, and very significantly from the point of view of those who run a hospice, it requires commissioners to identify need in their area, demonstrate transparency in publishing their plans of action and account for the progress they are making towards improving core palliative care services.

I do not know whether the noble Baroness had any choice over the timing of the Bill's introduction. For me, the timing is perfect, coinciding as it does with the Government working up their end-of-life care strategy, on which they will report later in the year. On that activity, I have this to say: for a long time now, I have been struck by the public sector's selectivity when it comes to consulting people. It is as though it avoids having to listen to anyone who might challenge current orthodoxy or whose superior experience and knowledge might be seen as a threat.

I share the view of the right reverend Prelate the Bishop of St Albans that it seems odd that the advisory board for the end-of-life strategy includes no one from the hospice movement. I suggest that, at the very least, a senior person from Help the Hospices is invited to join, even at this late stage. After all, between 80 per cent and 85 per cent of palliative care beds are provided by charitable hospices. At St Mary's Hospice, through the provision of in-patient services alone we save the NHS £1 million a year, calculated on the basis of the tariffs it employs. That does not include the round-the-clock, seven-days-a-week telephone advice that we provide. It does not include the daycare. It does not include the numerous add-ons such as complementary therapy.

On the end-of-life care strategy, might the Minister be able to help me when he comes to speak on behalf of the Government? According to information that I have, there are across the United Kingdom nearly 100 vacancies in palliative care medicine. On the understanding that the new strategy will extend, quite rightly, far beyond cancer, the workload will inevitably increase significantly. I have heard it suggested that it may even double. Will the Minister tell me, or perhaps inform me in writing, what steps he has in mind to address this problem?

Reading the debate introduced by the noble Baroness, Lady Jay, not long ago—I was very sorry to miss it—I experienced some unease at a number of noble Lords challenging the notion of palliative care going beyond the relief of physical symptoms. There are certainly some add-ons and therapies that we offer in St Mary's which I would be very hard pressed to measure. I do not think that I can improve on the observation made by right reverend Prelate the Bishop of Winchester in that debate, who said:

"I am not arguing that the effectiveness of palliative care services should not be rigorously assessed and evaluated, but I suggest that in this field, as in many others, there is much that is real, true, describable and important, but not, in the end, measurable".—[Hansard, 31/1/07; col. 311.]

Albert Einstein put it even more simply:

"Not everything that matters can be measured and not everything that can be measured matters".

There is another major stakeholder whose voice is seldom heard—the general public. Of this I feel certain. The general public, certainly in Cumbria, most certainly want the unmeasurables that we provide. In support of that opinion, I ask why else they give such unstinting and loyal financial support. In our case, it is nearly 90 per cent of our total costs.

I shall highlight just one of these unmeasurables—the bereavement service. This is quite often dismissed as unimportant and low on the scale of priorities. Perhaps there was a time when even I was a sceptic. I now know through our experience that it is hugely important. Put at its most prosaic, it is quite often the only path along which a devastated individual family is able to function and resume normal life. Put another way, at the heart of what we in the hospice movement believe is that not only dying people, but also their families and loved ones, must know that they will not be abandoned to their suffering just when they are most in need. Not infrequently, it is the dying person who needs to know that the family will be looked after in this way.

At a 30 per cent level of public support for hospices, I venture to suggest that a happy synergy kicks in. Ministers who are faced with an imperative to account for public money can sleep easily in the knowledge that they are getting a bargain deal on core costs of palliative care, and the public get the extras through their local contribution. However, if this is to work, as it can and should, it will entail close co-operation between the public and voluntary sectors. Such co-operation has so far been elusive. Differing cultures present real problems which cannot be wished away.

Here I come to my second area of optimism. We in Cumbria have a new PCT under new leadership. We are in discussion with this almost brand-new organisation, with a view to establishing what has become known as social enterprise, which would provide the best possible end-of-life care through proper partnership between the hospice movement, the NHS, social services, the voluntary sector and private nursing homes. The PCT has made it clear to us that it believes that our hospice can play a leading role in developing and spreading best practice around individualised patient care. I pay warm tribute to it for this brave and welcome initiative. I believe that it would be the first such enterprise of its kind in the UK and could herald a new era for hospices. It will be a triumph for all participating parties if we can make this work. We are in the very early days of building our partnership, but I have high hopes for it. There appears to be the will among all concerned and on all sides for it to work.

I would welcome the Minister's comments on rurality—I have touched on it previously. There was a time when, as I remember, financial formulae were in place which were designed to even out the inequities of public service provision which arose out of rurality or remoteness. They have largely been removed with two results: first, providers in rural areas are put under terrible pressure to maintain services and balance their books. The second inevitable consequence is growing rural deprivation. I know that this is a complex subject, and I acknowledge also that common sense dictates that there are trade-offs as a consequence of living in a remote area. However, there should be areas in which there should be no trade-offs and no compromises, and palliative care is one of them. I hope that the Minister will look at this again. If he does not, I fear that he will add in significant degree to the growing problem of rural deprivation and the worsening provision of palliative care in areas such as Cumbria.

It has been pointed out to me that Eric Cassell, professor of public health at Cornell University, is regarded as one of the greats in contemporary medicine. He has said:

"The test of a system of medicine should be its adequacy in the face of suffering".

This short but important Bill seems to echo Cassell's dictum. I support it and wish it safe passage.

Photo of Lord Alton of Liverpool Lord Alton of Liverpool Crossbench 1:16 pm, 23rd February 2007

My Lords, my noble friend Lady Finlay of Llandaff has rendered a great service to your Lordships' House by introducing her excellent and timely Bill. I think that we were all moved by the powerful speeches that were made in this debate, and by none more so than those of my noble friends Lady O'Neill of Bengarve and Lady Masham of Ilton, and of the noble Baroness, Lady Gardner of Parkes. I was privileged to meet the late husbands of the noble Baronesses, Lady Masham and Lady Gardner, and I am certain that we were all deeply affected by the experiences which they shared with us today and would want to be associated with the condolences which have already been expressed.

My noble friend's Bill is urgently needed and the speeches that we have heard have explained why. The UK leads the world in palliative care, but its universal application is compromised because this crucial service remains underfunded. The Bill is not about assisted dying or euthanasia, which rightly remain entirely outside the scope of this measure. However, as the noble Lord, Lord Colwyn, argued earlier, it provides us with a radical alternative to arguments for the killing of the terminally ill or disabled.

As my noble friend told us, palliative care is about enhancing quality of life and enabling patients to live as actively as possible until they die naturally, peacefully and, wherever possible, with their families around them. The World Health Organisation describes palliative care as improving,

"the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement".

By 2031, 23 per cent of the population will be at pensionable age or above, of which 12 per cent will be over the age of 75, in comparison with about 8 per cent at present. As people live longer, the need for palliative care services will clearly increase hugely, and we need to confront the issue now to plan well for the future. That is why the Bill is so timely. It is unacceptable that two-thirds of hospice funding still comes from the voluntary sector. The National Council for Palliative Care has recently released a funding survey which states that around 60 per cent of hospices are experiencing a real-terms decrease in the value of the funding contributions from the National Health Service.

I know from my own involvement over many years as vice-president of JOSPICE—St Joseph's Hospice Association—that its hospices at Thornton on Merseyside and at Ormskirk in Lancashire, as well as its hospices overseas, run at full capacity. At times, it has been a desperate battle to raise the funds to ensure that they can meet those needs. The quality of palliative care in hospices such as these and all over Britain, as we have heard from all parts of your Lordships' House today, has made huge strides during the past 10 to 20 years, but its quantity and distribution simply have not kept pace. As a result, there is a postcode lottery for the terminally ill, as was said in the preceding speech. Inadequate funding is allotted to palliative care within the NHS and there are not enough trained specialists in practice.

Three years ago the NHS Cancer Plan promised an extra £50 million a year specifically for specialist palliative care. This addition, made by the Government, is of course extremely welcome but it is thinly spread across the country. Progress is slow and not all the resources are reaching front-line specialists. The National Council for Palliative Care estimates that, while 95 per cent of patients using hospice or palliative care have cancer, 300,000 people with other terminal diseases are excluded. Yet even for those with cancer the provision is far from satisfactory. According to Marie Curie, more than 155,000 people die of cancer every year, yet Help the Hospices points out that there are only 3,250 hospice beds available, and 2,489 of these are supplied by the voluntary sector.

Half of all patients diagnosed with motor neurone disease—an issue raised powerfully by the noble Lord, Lord MacKenzie of Culkein—die within 14 months of diagnosis. Yet in 2005, the Motor Neurone Disease Association identified that only 39 per cent of these patients were referred to specialist palliative care services. Because hospices have often been funded by cancer charities, some only admit one person with MND at a time and access can be difficult. Is it any wonder that people often become deeply depressed or suicidal when diagnosed with MND, particularly when their fears can be stoked by the pro-euthanasia lobby? Palliative care does not require expensive treatments or technology because its essence lies in specialist knowledge of how to use pain-relieving drugs and how to give holistic care to ease the dying process. A relatively small refocusing of NHS resources would bring disproportionate benefits compared with other branches of medicine. Only a minority of us will need cardiac or neuro surgery but one in two of us will be in need of good palliative care when we die.

In the recent debate in your Lordships' House initiated by the noble Baroness, Lady Jay, which has been referred to, I was disappointed to read some of the scepticism that was expressed about the holistic nature of palliative care, especially the spiritual aspects—a point touched on at the outset of the debate by my noble friend and by the right reverend Prelate the Bishop of St Albans in his very moving speech. The World Health Organisation description of palliative care that I referred to earlier specifically refers to the spiritual support provided by palliative care and the desirability of providing that support. The importance of this spiritual support is reflected in guidance from NICE. I was interested to read some material from the Association of Hospice and Palliative Care Chaplains on this point, which states:

"Spiritual Care has always been central to the philosophy and practice of Palliative Care. Palliative Care seeks to be holistic in its approach to its care of persons with life-threatening illness and to integrate the physical, social, psychological and spiritual so that patients and carers may come to terms with their experience of dying as fully and creatively as they are able".

At a time when fears are being expressed about the marginalisation of faith groups in the delivery of public services, I look forward to receiving the Minister's assurance that the Government, like WHO and NICE, recognise the importance of the spiritual dimension of palliative care and will ensure that this support service is appropriately resourced.

By extending palliative care to all terminally ill patients, as my noble friend's Bill attempts to do, the Government would save the NHS money. Marie Curie Cancer Care in its Dying at Home report points out that every pound invested in home palliative care services will free up £2 in the NHS. This is an attractive proposition, yet despite increased funding commitments the number of cancer patients dying at home has remained the same—a point made by the noble Baroness, Lady Howe of Idlicote, and others—with 80 per cent of resources allocated to specialist palliative care being allocated to hospital-based care, and that should change.

A Help the Aged report found that older people are,

"less likely than younger people to receive support at home, in hospital or in a hospice, or to receive attention from GPs or district nurses during the last year of their lives. Older people are often described as the 'disadvantaged dying'".

But children are at a disadvantage too. I am a patron of the Zoe's Place Trust, a charity that runs two baby hospices, one in Liverpool, which I helped to establish, and the other in Middlesbrough. There are plans to open a third in the Midlands. When one considers that children's hospices receive only approximately 5 per cent of their funding from official sources whereas adult hospices receive 30 per cent from the same sources, it comes as little surprise that many children's hospices struggle to survive. It costs an average of £2.5 million to run a children's hospice service each year.

In a joint submission by the Association of Children's Hospices and the Association for Children's Palliative Care, provided for me by St Francis Children's Hospice, Manchester, which I have visited and where I am a patron, it is estimated that 25,000 families in the UK are coping with morbidity of a child, adolescent or young adult. They say that 3,400 children die annually with 80,000 to 100,000 family members affected and requiring palliative care and support. The submission is an excellent document in which they describe their,

"shared vision of a good life and a good death", a point so eloquently expounded upon earlier by the noble Lord, Lord Carlile of Berriew. I commend that submission to Members of your Lordships' House for further study.

But if holding the line of existing provision is extremely difficult, what of expanding the provision of children's hospices? Hospices such as Zoe's Place are extremely grateful for the £27 million, spread over three years, which the Government have recently made available to them, in the form of so-called Section 64 grants by the Department of Health. But these funds are to help with running costs of existing hospices. What we badly need are more hospices. It is highly desirable that the Government should help with capital costs; for example, by providing matching funds to enable charities to expand the total provision of hospices, especially for the young. No fundraising is easy, but raising cash to sustain existing premises, which people can see and actually use, is probably easier on the whole than getting support for a project which is still on the drawing board. So what are most needed are the one-off grants to enable new hospices to be built. Comprehensive palliative care legislation should be our priority. I am sure that my noble friend has that right.

I conclude by addressing an argument that was put by some Members of your Lordships' House today—that a Bill of this nature can quite happily coexist with the legalisation of euthanasia and physician-assisted suicide. We have heard much about patient choice and autonomy in one or two of the speeches, but if personal autonomy becomes a creed, we descend into barbarism. If public reason and statute are to subsist on a diet of choice, autonomy and claimed rights, it will inevitably lead to the emaciation of values which have hitherto underpinned the common good. Hospices and palliative care are surely among the most striking representations of a practical working-out of the common good. My noble friend is therefore absolutely right explicitly to leave out such an approach from the scope of this Bill.

Far too little consideration is given to the implications of replacing an approach to suffering based on relief with an approach based on the ending of life. What does it do to someone who has a disability or a serious illness if you constantly drip-feed them the lie that they would be better off dead? If, ad nauseam, we persist in telling them that their lives have no value, they will doubtless come to believe it. We rightly hear a lot about dignity, but where is the dignity in an approach predicated on an assumption that your life holds no further worth? Telling someone that they would be better off dead represents a failure in what the noble Lord, Lord Carlile, rightly referred to as our duty to care. "Care" and "kill" cannot be used as synonyms; nor can they be cohabitees, coexisting in a hospice established to provide unconditional love, not a lethal injection. It is simply nonsensical to pretend that someone's life has value if you simultaneously insist that their very existence is of negative value.

This fallacy that autonomy is a superior commodity to all other considerations has profound implications for the way in which we treat the sick. It also has profound implications for those who care for them.

Photo of Lord Lester of Herne Hill Lord Lester of Herne Hill Women & Equality, Cross-Portfolio and Non-Portfolio Responsibilities

My Lords, nothing in what I said suggests the opposite, does it?

Photo of Lord Alton of Liverpool Lord Alton of Liverpool Crossbench

My Lords, the noble Lord, who was a supporter of the Bill of my noble friend Lord Joffe in favour of assisted suicide, and who has represented the Voluntary Euthanasia Society on occasion in the courts, has expressed his views on other occasions. Members of your Lordships' House may measure them against what he has said today.

We have no right to tell a physician that they must judge a person's life as lacking worth and that it should, for this reason, be ended. In such a regime, the doctor is merely an automaton or hired gun. In the last analysis, if a doctor is to do the killing and be answerable in law, he needs to have considerable reason to justify doing so. If we adopt that approach, our hospices will become charnel houses. To die with dignity, we do not need doctors to kill us. Our best defence against a descent into such a murky world remains our excellent hospice movement and an internationally respected medical profession that is committed to the highest possible standards. The Bill seeks to achieve the constant improvement of palliative care, and I am very pleased to support it.

Photo of Baroness Emerton Baroness Emerton Crossbench 1:30 pm, 23rd February 2007

My Lords, I join other noble Lords in congratulating my noble friend Lady Finlay on introducing the Bill, which I support. I declare an interest as a retired nurse, although I am not a specialist in palliative care nursing. My concerns have been raised recently by the vast increase in the public's disquiet about the care of the terminally ill in general hospitals and the community setting. This is supported by Healthcare Commission evidence, to which my noble friend Lady Finlay referred, that in excess of 54 per cent of complaints received about hospitals show that families received contradictory or confused information from different staff caring for relations. In other complaints, relatives felt that they were unprepared for the death or had no time to arrange for family members to be present. This overwhelmingly confirms the need for an end-of-life care strategy, and I am delighted that a committee under the chairmanship of Professor Michael Richards has been established. Other noble Lords have already referred to this.

I understand that there are various sub-groups, and although there is no specialist palliative care nurse on the central board, I hope that nursing will be represented on these working groups. I hope that the Minister will be able to reassure me about that, as I am sure he will recognise, as do other noble Lords, that 80 per cent of direct care is delivered by nurses, who provide a very important part of the care programme and have much to contribute by observing changes in the condition of the patient through patient contact, in addition to providing direct care.

Inevitably, the nurse has a close professional relationship with the patient and family, and plays a most important part in carrying out the most intimate care requirements: ensuring that pressure areas are treated to avoid pressure sores, the mouth is kept moist, and nutrition and hydration needs met; monitoring levels of pain and discomfort and treating accordingly; and maintaining the dignity of the patient throughout. Nothing is too basic in holistic care. The care must be holistic; that is, it must meet the physical, mental and spiritual needs of the patient, as stated in the Bill.

As a student nurse in the introductory course 54 years ago, I remember being told by the tutor—the noble Lord, Lord MacKenzie of Culkein, mentioned the value of good teaching—that holistic care requires not only the direct treatment of physical symptoms but that often there are latent issues affecting the mind or spirit. I was also told that careful observations by the nurse often reveal what these issues are, and that they may be one of the root causes of the patient's discomfort and require attention and even treatment. Likewise, a patient in a terminal stage of illness who is suffering from a physical condition often has a latent psychological or spiritual need that is not immediately manifested, but the need for holistic care by the palliative care team for the patient and family is still vital. It is for these patients that extra time is needed to determine the underlying cause of the problem. The nurse is often the first to pick up the signs because of their major involvement in the treatment of the patient, but this calls for sensitivity and an ethical approach when dealing with often sensitive, personal issues. If the nurse is not able or equipped to deal with the particular situation, they need to refer for help. A team taking a holistic approach values the worth of each member's contribution.

Dr Christine Kalus, consultant clinical psychologist and chair of the British Psychological Society working party on end-of-life issues, states that,

"the research perspective in relation to the Psychological Dimensions is a relatively new in the specialist Palliative care field but is growing and changing alongside other developments in the general field of health and social care".

My noble friend Lady Finlay has already mentioned that. The benefits of the specialist being dedicated to taking a "whole person approach" means that researchers can make a variety of research methods both quantitative and qualitative, to approach an exploration of the questions that this complex and challenging field offers.

Dr Kalus continues:

"Clinicians are aware that they need not only to take account of the best practice evidence base for their work but also to work as 'scientist practitioners'. That is, to take a systematic approach to their work and treat each situation as a case study. This may take the form of a quantitative inquiry, using standardised measures to ascertain changes in symptoms, pain or it may be using more qualitative approaches such as new methodologies; for example Mckardle and Reason (2006) ... There is also an assessment currently being developed in the UK by clinical psychologists based on work in the US. This assessment is known as the Distress Thermometer ... and it aims to help the individual name and rank their distressing symptoms across a number of domains including spiritual, social, psychological and physical. Once the individual has made a decision about what their most distressing symptoms are the multiprofessional team can work together with the family and the individual where appropriate to try to alleviate/ameliorate those symptoms as far as possible. Preliminary results show that the DT is enabling nursing and medical staff to move into domains that they would previously have found difficult and also to make more appropriate referrals to the relevant other professionals ... It is therefore imperative that psychologically trained practitioners are part of the core multiprofessional team to offer guidance, support and supervision to the staff and also appropriate assessment interventions for the individual patients, their families and following death for the bereaved as appropriate".

As the noble Lord, Lord Cavendish, has already stated, it is also helpful to remember the words of Albert Einstein, who said that not everything that matters can be measured and not everything that can be measured matters. The Bill also includes the words "social" and "spiritual". Time does not allow me to pursue these, but I must emphasise that both are important, as the right reverend Prelate the Bishop of St Albans so eloquently explained.

The Bill also sets out regulations and standards. A variety of checks are, of course, already in place. For example, hospices carry out rigorous self-assessment that is then audited by inspection by the Healthcare Commission. The relevant clauses cover patient focus issues, safety, governance, clinical cost-effectiveness and the environment, amounting to 74 pages of detail. However, these checks are only for hospices, not for hospitals or community care in the patient's home. One important factor that cannot be ignored is that the level of development of pressure sores is very low with good basic nursing care when nurses have time to perform this vital aspect of care. This is not confined to the palliative care patient; the need for such care applies to all patients who are too ill or too weak to move themselves around enough to avoid the risk of pressure sores.

The Bill would give the Minister powers to create regulations and standards. One hopes that such regulations will be unnecessary if there is a culture change in openness and transparency and in trust between patients' families and team members. Dame Cecily Saunders stated:

"Palliative Care is not only to help you die peacefully but also to live until you die".

However, that is not always an easy assignment, certainly not for the patient, for the family or even for the palliative care team. It takes time, energy and commitment to overcome what might seem to be insoluble problems, but they can be overcome with the special attention that they deserve.

For example, the Royal Marsden Hospital, the largest comprehensive cancer centre in Europe, has a large palliative medicine department. It receives approximately 40,000 new patient referrals a year, and of those the department of palliative medicine sees around 1,200 new patients a year. Its aim is to control pain and distressing physical and psychological symptoms and to discharge the patients to the community services close to their home. Despite its best efforts, approximately 500 patients die in the hospital.

So-called assisted dying is outside the scope of the Bill, but as the topic has been raised by one or two noble Lords in this Second Reading debate, I will make a comment. Notwithstanding the physical and mental suffering of those patients, the palliative care team of the Royal Marsden reports that less than one patient a year asks for help to die. The palliative care team seeks to address the underlying cause for that request, and over the years of caring for thousands of terminally ill patients, not one has ultimately convinced the team that it was the answer. The director of nursing care of Fair Havens Hospice, Catherine Wood, states that,

"patients admitted with long term degenerative illness often request that death is aided because they do feel initially repulsed with their body. But good palliative care from an appropriate multi-professional team resulted in the request being withdrawn as improved comfort, quality of life and learning to cope better with their illness have made life more bearable. Every single one of the cases I have personally witnessed has expressed their gratitude to us for not acting upon their original request".

Surely that demonstrates that patient choice can be addressed. The hallmark of a civilised society is to care for the vulnerable, the mentally ill, the old, the young and the infirm.

The Bill provides the way forward to deliver appropriate end-of-life care to a standard of excellence that already exists in places such as the Royal Marsden Hospital, including the excellent work of hospices. It is a standard that surely all patients and families deserve and should be able to experience, as so movingly expressed by the noble Baronesses, Lady Gardner of Parkes, Lady Masham and Lady O'Neill.

Photo of Baroness Neuberger Baroness Neuberger Spokesperson in the Lords, Health 1:42 pm, 23rd February 2007

My Lords, I, too, congratulate the noble Baroness, Lady Finlay of Llandaff, on the Bill. I support it, and I wish it well. I declare an interest as one of the founders and now a patron of the North London Hospice and as former chief executive of the King's Fund. I have a long-standing interest in palliative care, and I have written extensively about caring for dying people. I also want to congratulate the noble Baroness, Lady Finlay, not only on introducing this Bill so beautifully and ably today, but on her birthday. What a day to introduce her Bill.

I, too, pay tribute to the very moving speech made by the noble Baroness, Lady Gardner of Parkes, who made it all too clear to us why we should support the Bill; as did the noble Baroness, Lady Masham of Ilton, in her account of her husband's death; and as did the noble Baroness, Lady O'Neill of Bengarve, in her very moving account of her brother's death, particularly about the lack of access to the drugs that would have made a difference if palliative care services had been universally available 365 days a year, 24/7.

This Government are to be commended for the work that they have put into cancer services. The cancer plan and the work of Professor Mike Richards as the cancer tsar have been remarkable. We are, as many other noble Lords have mentioned, still awaiting further news on the exact timing of the end-of-life strategy on which Professor Richards and others are engaged, as we were a few weeks ago when we last debated palliative care. I hope that the Minister can tell us how he proposes, once he gets the strategy, to use it to ingrain support for palliative care into the National Health Service. We seem to have reached a watershed in provision of palliative care services. While children's hospice services have rightly grown, they are still woefully under-funded, as the noble Lord, Lord Alton of Liverpool, made clear in his speech. There is now a review of palliative care services for children and a campaign seeking guaranteed funding for palliative care services for those children. While palliative care services for patients with cancer now have a greater reach, although by no means far enough, palliative care services for people with other conditions are distinctly hit and miss, as other noble Lords have mentioned.

The Government published their summary of the progress of the NHS end-of-life care programme last March. And there has been progress, but, as many people will tell you, by no means enough. In nursing home care, it is by no means common to receive proper palliative care at all alongside the general nursing care that is ordinarily provided, although the best nursing homes provide an excellent service. Yet, in all too many care homes, the palliative care that would afford the human dignity for dying people of which the noble Lord, Lord Brennan, has rightly reminded us, is not available. The noble Baroness, Lady Greengross, was absolutely right to emphasise, in the name of the noble Baroness, Lady Murphy, who is not in her place today, the poor support for people with dementia, especially when they are dying.

The Department of Health introduced its Introductory guide to end of life care in care homes last April, co-authored with the National Council for Palliative Care, and it set out what patients can expect, but, as yet, it is not enough. PCTs vary in how much they pay, and to whom, to provide palliative care services. This cannot be right. There is rarely a day when I do not receive a letter or an appeal asking me to support the campaign of one hospice or another around the country or one palliative care service or another somewhere. That must be true of all noble Lords here today. I also hear about palliative care teams threatened either with closure or, as is more common at the moment, asked to do more generic and less specialist work. So the noble Baroness, Lady Finlay, is right to try to force the Government to do more to support palliative care and to mainstream it throughout the NHS.

We know that hospices are dearly loved. I was a speaker last week at the second Cecily Saunders memorial seminar at St Christopher's Hospice in south-east London, which Dame Cecily founded. It was well expressed that there is huge appreciation, huge support and considerable irritation that so much of the money has to be raised voluntarily and that the National Health Service puts so little into palliative care services, comparatively speaking. In addition, the National Council for Palliative Care makes it clear that in real terms the value of the Government's existing contribution to specialist palliative care services is being eroded, despite their 2005 manifesto pledge to double the investment.

When it comes to beds being funded in hospices or the funding of services provided by hospices, full recovery cost is rare, so that providing services for the NHS means that the voluntary sector is out of pocket. That is outrageous—indeed, you might say that it is even worse than outrageous. In most cases, funding from the NHS for a percentage of beds in a hospice is on a year-by-year basis, often decided after the financial year has begun. There is no good reason why those contracts could not be drawn up with at least three years to run, and no good reason why government should not issue the strongest of guidance to the service, however strapped for cash it is, that this approach to the hospices is bound to cause chaos and resentment, and fits singularly badly with a government approach that wants to increase hospice an palliative care services.

The present figures show a gap of some £150 million to £200 million between what hospices spend on NHS services and what the NHS actually pays for—other noble Lords have drawn attention to that—and the gap is widening. It is disgraceful. The noble Lord, Lord Patten, was right to draw attention to the plight of the Pembridge Unit, and I am sure that many of us have received letters from that unit or have seen other people lobbying on its behalf. Its funding shortfall is a disgrace—and, of course, it was originally a National Health Service service.

The noble Viscount, Lord Bridgeman, is right to point out the difficulty that St John's Hospice, even with the support that it has from the rest of the charity, is experiencing. From all sides of this Chamber, we could go on and on raising individual hospices or individual services that are having some kind of difficulty.

Meanwhile, 95 per cent of those who access palliative care services have cancer, although only 25 per cent of people die from cancer. There are gross inequalities in whether you can access palliative care services if you do not have cancer. It depends almost entirely on where you live. My parents lived in north Camden and both were fortunate enough to receive superb palliative care at the end of their lives, although neither suffered from cancer. I echo the words of the right reverend Prelate the Bishop of St Albans about spiritual care. My mother was a refugee from Nazi Germany. She was not a religious woman; having a rabbi as a daughter was a source of deep disquiet to her. However, at the very end of her life, she kept talking about going home. She did not mean going home to meet her maker; she meant going home to Germany. It was the combination of a specialist palliative care nurse and a district nurse, with their training in spiritual and psychosocial support, who were able to work out what she was saying, precisely because they had the skills and broad ability to reflect. Those are not widely available if you have not had that training and you are not sufficiently clued-up. Had my parents lived across the border in Islington, those services would not have been available for them. Had they lived across the border the other side, in Westminster, those services would have been partially available—very possibly at St John's Hospice.

This is not about rich or poor—some poorer areas have far better palliative care services than wealthy ones; nor is it about whose need is greatest. When we look at the spread of hospice and palliative care services, it is largely about history. It is about where services happen to grow up and where voluntary groups started them off. There simply is not enough provision—particularly not for people with conditions other than cancer. People's own preferences for where they want to die are largely going unmet. The noble Lord, Lord MacKenzie of Culkein, was right to draw our attention to the very different treatment of two friends dying from motor neurone disease. These differences are deeply disturbing. We keep hearing of this. In one place it is good and in another it is bad; we must be able to do better than that.

I want to take a more general look at the palliative care services that are provided by primary care services. Although 60 per cent of acute care trusts are now using the Liverpool care pathway, only 28 per cent of GP practices are doing so. Coverage for all patients rather than cancer patients alone ranges from 50 per cent for GP practices to 97 per cent for community hospitals. Far too often, patients do not get their preferred place of care, despite the preferred place of care advanced planning tool that patients hold for themselves and through which they can discuss their thoughts and choices with healthcare staff.

There is a real variation here. If you talk to people who run services, they will tell you that they want different things. In a study conducted by the King's Fund a couple of years ago, people prioritised different services that they wanted to make the service work better. GPs prioritised specialist services such as specialist nurses and in-patient beds. District nurses prioritised daytime district nursing. Marie Curie nurses wanted night cover—Marie Curie nurses are highly valued but not always available. District nurses also wanted specialist assessment and in-patient beds. Like GPs, they rated out-of-hours GP cover as a lower priority but, being district nurses, they highlighted night district nursing services as a high priority. I could go on.

This is a complex system; it is not easy. Even if the Bill gets full support and goes forward, this still is not easy to do. Palliative care services cannot do it alone. This Bill is about palliative care, but I believe that we need even more than that. In a sense, the Government could issue guidance to NHS bodies if they really wish to make clear their determination to improve services for dying people, but they will need to do so with a whole-systems approach as well as an approach involving specialist palliative care. That means a variety of things. It means a commitment to education in this area for all medical, nursing and health students, and, as the noble Lord, Lord Colwyn, has already mentioned, the Bill has rightly been welcomed by the GMC because it is about to review the standards expected of medical students and can ensure that the themes within the Bill are included in that review.

The noble Lord, Lord Cavendish of Furness, was right to highlight the vacancies that exist within palliative care services, and there is a huge need here for further training. The possibility of education provision is included under regulations in the noble Baroness's Bill at Clause 5(2)(e), but I argue that everyone needs this training. Irrespective of whether students expect to look after people with terminal illness, this should be a basic part of healthcare training. Mortality covers 100 per cent of the population: we all die. In their training, all students deal with pregnancy, child health, some emergency procedures and infectious diseases, but they do not yet cover the entire population, while death does. It is not enough to require training for those who care for terminally ill people at any one time; it should be a given. And it should fit with other training, such as the medical ethics training which all students now get and which includes the principle of autonomy. My noble friend Lord Lester of Herne Hill raised that in his speech and it led to a slight altercation between him and the noble Lord, Lord Alton, but that is a debate for another time.

Secondly, there should be a huge dependence on primary care, and here I believe that the Government could make a big difference in their guidance to PCTs. Most people will have only limited access to specialist palliative care and may not need more, but those who care for them will need access to specialists, and GPs and district nurses need to feel well supported and well equipped to handle the deaths of the people they care for, especially those who are dying at home.

Lastly, as well as the Minister telling us how he is going to carry forward the principles contained in the Bill and how he is going to use all the techniques that he and his colleagues have at their disposal of urging, nagging and sending guidance to the service, I urge him to tell us how he will work with others on a cross-departmental strategy involving stakeholder organisations outside government, many of which support the Bill, to look at how we can better support people in coping with death, dying and loss. This matter goes broader than what is contained in the noble Baroness's excellent Bill. As others have said, I believe that it means public education, bereavement support, support for dying at home, respite care, extra benefits for carers, education for non-healthcare staff, such as social services staff and benefits advisers, and links between palliative care services and the prisons and secure mental health hospitals, because people die there too.

My noble friend Lord Carlile was right to emphasise that we expect to have a good birth and a good death. There is a duty to care, and we need concerted action—the noble Baroness, Lady Finlay, is right about that. I hope that the Minister will be able to offer us support for the Bill and the principles behind it. We now need concerted action.

Photo of Lord McColl of Dulwich Lord McColl of Dulwich Shadow Minister, Health 1:58 pm, 23rd February 2007

My Lords, I, too, congratulate the noble Baroness on introducing this Bill. I also express my deep sympathy for my noble friend Lady Gardner in her loss; I was deeply moved by her courageous speech. I declare an interest as president of the Mildmay centre in east London. I was involved in setting up this first hospice in Europe for people dying of AIDS.

During the Select Committee chaired by my noble and learned friend Lord Mackay of Clashfern, we had a very useful contribution from Help the Hospices, which stated that,

"experience of ... pain control is radically different from the promise of pain control, and cessation of pain almost unimaginable if symptom control has been poor. On this view, patients seeking assistance to die without having experienced good symptom control could not be deemed fully informed".

It is clear that some people have not grasped the important fact that experience of pain control is radically different from the promise of pain control. When one reads some of the speeches on previous debates on the hospice movement, one realises that there are serious misunderstandings about the nature of palliative care. The noble Baroness, Lady Finlay, drew attention to NICE's definition:

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

I was pleased to see that incorporated in Clause 7 but sad that in our previous debate on palliative care, on 31 January, the Bill was criticised for including,

"psychological, social and spiritual help", which NICE said was paramount. The critic described the inclusion in the Bill as "mission creep".

The question was asked: how would NHS performance managers measure the efficacy of spiritual intervention? How indeed? As other noble Lords have asked, are we saying that, because we cannot measure something precisely, it cannot be allowed to exist? I hope not. It sounds rather like the language of accountants, who know the cost of everything and the value of nothing. That was stressed by my noble friend Lord Cavendish of Furness, the right reverend Prelate the Bishop of St Albans and the noble Lord, Lord Alton of Liverpool.

NICE went on to say:

"Palliative care is part of an overall supportive care, which anyone facing a life-threatening or long-term illness will need at some time".

Palliative care is often seen as simply offering pain control and symptom control, but it offers a great deal of psychological support in helping people to come to terms with what may have been potentially a devastating diagnosis or piece of news at the end of a process of treatment.

In the debate on 31 January it was implied that there were patients who did not want palliative care, which includes relief of nausea, vomiting, respiratory distress, pain, intolerable itching, anxiety, insomnia and many other symptoms. Where are the people who want to suffer those symptoms without relief? Perhaps the misunderstanding derives from another statement in the debate that opiate medication caused drowsiness and dry mouth and made patients befuddled, and that some patients forgo pain relief to avoid that. They choose to be alert at the cost of considerable suffering.

Good palliative care avoids the need to make that choice. Modern drugs in small, precise doses relieve symptoms without knocking the patient out. It was stated that breathlessness, profound wasting, skin breakdown and choking are difficult to relieve, but those are the very symptoms that palliative care concentrates on preventing and relieving. How is that accomplished? As the noble Baroness, Lady Emerton, emphasised, such symptoms are prevented by good—excellent—nursing care. When a patient is dying he is susceptible to thrush in the mouth, called candida because it is a bright white colour. It is easily treated. Dry mouth from drugs, or because the secretions tend to dry up when the circulation of the blood is inadequate, can be effectively managed with good mouth care.

Anyone who goes to bed for a week—I am sure that all noble Lords have experienced this—tends to develop painful areas. There are six areas to be precise: heels, elbows and the sacral area. If regular attention is not paid to those areas, they can ulcerate and produce a very uncomfortable and painful bedsore. In the good old days, if a patient developed a bedsore the attending nurse had to report to the matron—that was when we had them, and how much we miss them. Pressure sores are a pointer to poor nursing care. They are not an inevitable accompaniment of terminal illness.

People may have a mistaken view of palliative care because their views are coloured by what happened several decades ago, when pain and other symptoms were poorly relieved by inappropriate doses of morphine, which were only given when the pain had come back with a vengeance. The exhausted patient tended to lapse into semi-coma and then resurface whenever pain returned, only to be greeted by another injection of morphine. As has been mentioned, the speaker on "Thought for the Day" only this morning, who clearly had little knowledge of modern medicine, stated that doctors commonly give patients in pain massive doses of morphine to end their lives. That is outdated medicine of a bygone age.

The noble Lord, Lord Lester of Herne Hill, raised the doctrine of double effect, which has troubled him for some time. I am grateful to him for confirming that Mr Justice Devlin described double effect in the trial of Dr Bodkin Adams. With all due respect to the learned judge, who eventually became a Member of your Lordships' House, the term "double effect" is most unhelpful. All treatments have a double effect. Penicillin can be given to cure an infection, but it can and occasionally does kill the patient.

Dr Bodkin Adams was accused of deliberately killing a patient at the end of her life with a large dose of morphine. The jury took exactly 45 minutes to reach their verdict of "not guilty", and rightly so. The chief prosecution witness was asked by the brilliant barrister for the defence whether he could say what would be the effect of giving this large dose of morphine to the patient. The witness said, "Given with intent to kill". The barrister hesitated, there was a long legal pause and shuffling of papers, and asked, "Would you like to reconsider that statement?". "No, quite definitely given with intent to kill". There followed a further shuffling of papers and another long legal pause, and the barrister then said, "Would it interest you to know that the patient received a similar dose three months before, without it killing them?". It later came to light that this expert witness had given a similar dose to a private patient six months earlier.

Much smaller doses are used nowadays, together with more effective drugs. It is important to emphasise that the dose required to relieve pain is a fraction of the dose required to kill. That, after all, is the definition of a good drug; we call it the therapeutic index. Some have accused doctors of hypocrisy in saying that they are giving morphine to relieve pain when they really know that they will kill the patient. That is quite a false accusation. If, however, the doctor was giving alcohol to relieve pain, that would be hypocrisy; the dose required to relieve pain is the same as that required to kill. So we can bury this confusing and unhelpful doctrine of the double effect.

As a suggestion, would those noble Lords who harbour doubts about the effectiveness of the hospice movement like to spend a day in a hospice, shadowing staff to see what goes on at first hand? I am sure that they will be surprised at the sensitivity of the care and the serenity of the place, let alone at the high morale and the warmth. That atmosphere is greatly appreciated by patients and families. Noble Lords might find it strange that those who work in an environment of imminent death enjoy their work and are fulfilled as they realise the true value of their vocation.

I wish the Bill well and congratulate the noble Baroness, Lady Finlay, on this excellent piece of work.

Photo of Lord Hunt of Kings Heath Lord Hunt of Kings Heath Minister of State, Department of Health, Minister of State (Department of Health) (NHS Reform) 2:10 pm, 23rd February 2007

My Lords, I declare an interest as a member and supporter of Birmingham St Mary's Hospice. Like other noble Lords, I start by congratulating the noble Baroness, Lady Finlay, on introducing the Bill. She has made immense contributions to palliative care and to your Lordships' House on many matters. I am delighted to respond to her Bill.

All noble Lords are grateful to Trixie—the noble Baroness, Lady Gardner of Parkes—for her courageous speech, which we all found most moving. It is good that her daughter is sitting below Bar and listened to her wonderful speech. The noble Baroness spoke movingly about the wonderful contribution of palliative care and the need for all doctors and nurses to understand the role of and access to palliative care. I could not agree with her more.

I echo the remarks of the noble Lord, Lord Carlile, who spoke about the celebration of death. That was well spoken, and all noble Lords agreed with his sentiments. There can be no question about the importance of palliative care or our need to widen its provision. The intent of the noble Baroness's Bill is widely welcomed. As the noble Lord, Lord Cavendish, the noble Baroness, Lady Howe, and the noble Viscount, Lord Bridgeman, suggested, there can be no doubt about the contribution of the voluntary sector and the hospice movement to palliative care services. That contribution has been profound, and we should be ever grateful. I recognise the challenge that the hospice movement faces in raising funds in a competitive environment for many charities and voluntary organisations.

We have had an interesting debate about the definition of good palliative care. The noble Lord, Lord Lester, and the noble Baroness, Lady Greengross, spoke about the need for a patient to have his wishes and choices respected fully rather than being subjected to a more paternalistic approach, and the noble Baroness, Lady Finlay, provides a definition in Clause 7.

The noble Lords, Lord Brennan, Lord McColl and Lord Alton, and the right reverend Prelate the Bishop of St Albans stressed the need for spirituality and echoed a debate that we had on the Motion moved some two or three weeks ago by my noble friend Lady Jay. My view is that the question of spirituality is a matter of conscience and personal perspectives and beliefs. I was very taken with the well chosen example given by the noble Baroness, Lady Neuberger. When I responded at the end of the debate on the Motion moved by my noble friend Lady Jay, I said that I would ensure that these matters are deliberated on in the end-of-life care working groups and strategy, which I shall refer to in a moment, because they are clearly very important, if undeniably difficult.

The exchange between the noble Lord, Lord Lester, and the noble Lord, Lord McColl, on the question of double effect was fascinating and, aside from judgments being made in the courts, there are clearly different clinical views on the matter. I understand that the Law Commission review is being considered by the Home Office. I am happy to write to the noble Lord, Lord Lester, if I can find further details about when the Home Office is likely to respond to that review.

The noble Lord, Lord Patten, echoed remarks made by the noble Baroness, Lady Knight, in a debate in Committee on the Mental Health Bill about wholly inappropriate activities by care staff that induce death. I have met the noble Lord, the noble Baroness and the noble Lord, Lord Carlile, to discuss the matter. I have asked them kindly to supply me with evidence. Clearly, such unacceptable behaviour can never be tolerated. I am anxious to learn what further actions might need to be taken by the health service. I have also invited those noble Lords to a meeting with the national clinical director on older people's issues to discuss the matters more fully.

Understandably, the noble Baroness's Bill has drawn widespread support from your Lordships' House. While the Government understand and obviously appreciate the Bill's intent, it is my duty to point out some of the problems with it. The noble Lords, Lord Patten and Lord Colwyn, anticipated my response. None the less, it is my duty to give that response. Essentially, we do not believe that it is necessary to impose a statutory duty for the provision of palliative care, as the general powers in Sections 1 to 3 of the National Health Service Act 1977 are sufficient to enable the Secretary of State to provide or secure the provision of palliative care as part of the health service. Those noble Lords who have been enjoying the debates on the Mental Health Bill will know that I have repeated this phrase on a number of occasions; indeed, I intend to do so vigorously on Monday.

Section 2 of the Act provides the Secretary of State with powers to provide such services as she considers appropriate for the purpose of discharging her duties under the Act. Those functions are in turn delegated to primary care trusts in England. These obligations are general duties. They also give discretion to the Secretary of State concerning the circumstances in which she will provide those services. The Secretary of State is not obliged to meet all medical or nursing requirements or demands. She is entitled to take into account the resources available and the demands placed on those resources.

In contrast, the Bill of the noble Baroness, Lady Finlay, appears to create a duty owed to every person with a terminal illness. As a result, the Secretary of State would be failing in her duty if an individual showed that she had failed to ensure the provision of palliative care to that individual so as to meet their individual needs. The Bill sets down that palliative care would be provided,

"to such extent as is necessary", to meet each person's reasonable requirements. By comparison, the NHS Act provides for the provision of services to such extent as the Secretary of State "considers necessary" to meet all reasonable requirements. The noble Baroness's Bill does not take account of the possibility that there may well be a considerable gap between the minimum requirements that the Secretary of State or a primary care trust would consider necessary and the more extensive requirements that an individual might consider necessary.

Under current legislation, a primary care trust can consider the provision of end-of-life care services alongside the demands on and requirements for other NHS services. The noble Baroness's Bill does not allow for that. In practice, her Bill, if enacted, would elevate the provision of end-of-life care services above all other NHS services. That is the problem with it.

The noble Lord, Lord Carlile, likes that approach. I understand why he likes it. He said that we should adopt the approach that the noble Baroness has very cleverly in her drafting adopted in the Bill to all other services. Of course he seeks intellectual justification for the similar approach that he takes to mental health. The problem is that, if we were to accede to the noble Baroness's Bill and to the noble Lord's amendments on Monday, what about the other services? It must follow that, one way or another, other noble Lords will seek to enact similar provision for all other NHS services. As night follows day, that will follow.

Photo of Lord Carlile of Berriew Lord Carlile of Berriew Liberal Democrat

My Lords, I am grateful to the noble Lord for giving us a trailer of an argument that we will have on Monday, which is very helpful for planning for that debate. But what is the problem about objective tests such as those set out in the noble Baroness's Bill? The Minister seems to be equating the objective test of what is reasonable with an entirely different subjective test of what a patient might wish for. We are asking in this Bill, and indeed in the Mental Health Bill, for nothing more than what is reasonable.

Photo of Lord Hunt of Kings Heath Lord Hunt of Kings Heath Minister of State, Department of Health, Minister of State (Department of Health) (NHS Reform)

My Lords, the noble Lord seeks in supporting the Bill to establish a statutory entitlement to services for individuals that, in my judgment, it would not be possible for the statutory services to guarantee to provide. He must recognise that that is a major problem. If we go down the route of legislating for all the things that we would love to be provided by local statutory services without any regard to the practical consequences, all we will do is raise people's expectations, which the statutory services are almost bound to fail to follow.

I was not going to let myself be distracted, but I did. I have no doubt that we will repeat those arguments on Monday. However, these are important discussions and debates. Getting the balance right between a general duty to provide services and explicit provision is clearly very important. However much I may disagree with the noble Baroness's approach, the need for us to improve the provision of palliative care in this country is not in doubt.

Noble Lords have graphically described why we need to do that. My noble friend Lord MacKenzie talked about variations in care in relation to two people whom he knew. The noble Lords, Lord Patten and Lord Alton, and the noble Baronesses, Lady Greengross and Lady Howe, all talked about variation in provision and quality of service. There are variations in geography and pathways of care. There is the fact that if you have cancer and are at the end of your life, you are much more likely to receive high-quality palliative care than are people suffering from Alzheimer's disease. There are many other examples where we clearly have a major problem of variation in services.

I also recognise the funding pressure on hospices. Several noble Lords talked about that; the noble Baronesses, Lady Finlay and Lady Neuberger, in particular, talked about some aspects of it. There is no question about the contribution of the voluntary sector to the funding of palliative care. I understand that the current contribution of the voluntary sector to end-of-life care and existing specialist palliative care services is about 60 per cent, which is an absolutely magnificent contribution. I also accept that the deficits in the health service in England in the current financial year have led primary care trusts to make some difficult decisions about the funding of local palliative care services. I do not seek to deny that that has happened and I understand that it has brought difficulties; indeed, we have heard examples of the difficulties that it has brought to hospices. I just say that that must be considered alongside a 40 per cent increase in NHS funding for adult voluntary specialist palliative care services since 2000. The NHS Cancer Plan 2000 recognised the need for increased NHS support for specialist palliative care, and that has followed.

I agree with the noble Baroness, Lady Neuberger, about certainty of funding. I well understand that if a hospice does not know from the beginning of the financial year or, indeed, within the financial year what its allocation from the health service will be, that is a pretty poor position to be in. I also agree with her that it is very desirable that hospices have long-term certainty of funding. That is not in my gift. As the noble Baroness rightly said, these are matters for primary care trusts. However, every time I can, I take the opportunity to make it clear to PCTs that, when they deal with voluntary organisations, they must recognise issues about the raising of money and the fact that those organisations cannot depend on funding in the way that statutory agencies can. I will talk about the end-of-life care strategy in a moment, but I hope that it will address some of those points.

The noble Lord, Lord Alton, referred to the challenges for those providing children's palliative care. The end-of-life care strategy does not cover provision of palliative care services for children, but an independent review of the long-term sustainability of children's palliative care is being undertaken by Professor Sir Alan Craft and Miss Sue Killen. My understanding is that the review findings will be reported to Ministers shortly.

I say to the noble Baroness, Lady Masham, that I and other noble Lords were very moved by what she said about her experience and that of her late husband. I was very sorry to hear of the shortcomings in the service and I shall refer her comments to officials working in this area, as well as to the primary care trust covering North Yorkshire. She is right to mention the Quality and Outcomes Framework for general practitioners, which I assure her contains some points relating to palliative care. The framework certainly recognises the need for GPs to provide their support in palliative care. Obviously, we will look at that to see whether more needs to be done. On C. difficile, of course we have mandatory guidance, but we look to update it from time to time. There is a rapid revaluation panel which looks at ideas and products for dealing with C. difficile and MRSA. I am happy to refer the product that the noble Baroness mentioned to the panel.

The noble Baroness, Lady Emerton, and the noble Lord, Lord McColl, made important and heartening contributions on the potential of pain relief. However, we heard from the noble Baroness, Lady O'Neill, in another very moving account, about the experience of her brother and the problem of pain relief in nursing homes, particularly at a holiday time. The availability of drugs within the community will be considered as part of the end-of-life care strategy. I am also aware of the problem that professionals post-Shipman have concerns and may be deterred from using effective painkillers. Of course, that is the last thing that we would wish to see happen. I understand that the department is working closely with healthcare professions on this issue in order to get the right messages across. The noble Lord, Lord Cavendish, talked about rurality. Perhaps I may write to him with details of the NHS approach to that.

On the end-of-life care strategy, perhaps I may say to the noble Lords, Lord Colwyn and Lord Alton, and the noble Baroness, Lady Emerton, that I was particularly struck by the demographics. They are quite right that the strategy will need to reflect the demographic challenge that we all face. This strategy is the way in which the Government will address many of the issues raised by noble Lords. The noble Lord, Lord Patten, said that the report is expected to be made to Ministers in the autumn of 2007 and asked me to define the Department of Health's definition of autumn. I am tempted to say that it has its ordinary and regular meaning; I am afraid that I cannot go further than that. However, of course we treat this with great importance. I am sure that my ministerial colleagues who are concerned with this area of policy will wish to study it with the greatest of care and be able to report to Parliament and the public on the outcome of that work. Several working groups have been set up, which will cover primary care, as referred to by the noble Baroness, Lady Neuberger, and the care home sector. They will also cover the very important issue of the training of staff—not just specialist staff, but general staff in particular.

I understand the importance of the questions raised about the membership of Professor Richards's group and the working groups. The advisory board has representation from the chief executive officer of the National Council for Palliative Care, which is the umbrella body for the NHS and hospices. I understand that Marie Curie is also represented on the board.

I would like to take back the issue of spiritual care to consider whether we can strengthen the ways in which the churches, religions and faiths in general can make a contribution to the group. There are a number of working groups on which, I understand, both spiritual care providers and hospices are strongly represented, as are, I should say to the noble Baroness, Lady Emerton, nurse consultants. The working groups have a broad representation, which is very important because we want the ownership of this work to be from as wide a spectrum of stakeholders as possible. As I have said, I will consider the position of the churches, particularly in relation to the advisory group, to see whether we can at least establish some kind of liaison between the churches and the faiths and the work of the group. I understand the importance of that.

The noble Lord, Lord Cavendish, is right about the recruitment of consultants, doctors and other staff in general. We believe that the recruitment of consultants in palliative care will increase significantly in the next few years. One of the working groups that have been established is looking into that issue.

I very much appreciate the quality of the debate. It has been very helpful and will inform the end-of-life care strategy. I again congratulate the noble Baroness on her Bill and I look forward to debating it in Committee in due course.

Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Crossbench 2:31 pm, 23rd February 2007

My Lords, I thank all noble Lords who have spoken today. It has been an outstanding Second Reading debate and every contribution has been riveting. The courage and dignity of the noble Baroness, Lady Gardner of Parkes, in coming here today to share her recent experience has raised an acute awareness of the importance of the debate. My noble friend Lady Masham illustrated what can happen when care is not available and, even more poignantly, my noble friend Lady O'Neill of Bengarve illustrated what happens when there is no care. She also referred to what has happened in the wake of Shipman. I shall return to that point as it is crucial in the care of patients.

I appreciate the Minister's generosity in welcoming the intent of my Bill. I recognise that he finds himself between a rock and a hard place in the tension between rationing and the allocation of resources. Perhaps the time has come when we are beginning to have an open debate about the country's priorities. The end-of-life care strategy is welcome and I am delighted that Professor Mike Richards has invited me to participate in the process. I hope to be able to carry the mantle and that responsibility forward into the work of the board and working groups.

The noble Baroness, Lady Neuberger, brought to the debate her wide experience and knowledge of palliative care services going back over many years. Her speech complemented mine completely. I feel that they should be read in conjunction in order to flesh out the importance of the issues that we have tried to address today.

Palliative care must become a basic part of the healthcare training of every professional. I am sad that some nursing courses have decreased their palliative care training in recent times, but glad that all medical schools in the UK now teach palliative care and that, in many of them, it is a subject of the final examination.

On the tension between rationing and the allocation of resources, it is an issue of choices. We have to be very careful that choices are not placed in a hierarchy in which those that save the NHS money are accorded a higher ranking, and more time, than those that cost more. After all, good care is not cheap care. I would also like to build on the issue of choices at the end of life, as alluded to by the noble Lord, Lord Lester, and my noble friend Lady Greengross. Choices are difficult, as are informed choices. The autonomy of one person cannot override the autonomy of another. There has to be an equipoise in the management of autonomy. Choices are acutely difficult when people are vulnerable.

During the summer I went to Belgium, which has recently introduced a euthanasia law, and saw the hospital services in Antwerp. I was struck by the fact that the palliative care team there, in conjunction with the hospital authorities, has introduced a palliative care filter. Every week, two or three patients who are expressing a wish to die—who are desperate to end their lives—are referred to the team. Since the Belgians introduced their law, only four patients have gone on to euthanasia, with three in the first year. The team felt that it had been a bit too rapid with at least two.

So there is a problem. Patients often express very clearly a wish to die because the situation in which they find themselves is overwhelming. It is gratifying for those of us who work in palliative care to find that we can lift the veil of black despair for patients. We can help them live again and get their symptoms under control. But as the noble Lord, Lord Alton, pointed out, despair is fuelled by misinformation; for example, misinformation to motor neurone disease patients on issues of suffocation and choking to death. That does not happen, particularly when they have good care. A very good international study which included post mortems showed that these patients do not choke to death. As was so eloquently pointed out by the noble Lord, Lord MacKenzie of Culkein, patients with motor neurone disease have complex needs. Good care allows them to fulfil their lives; bad care is a disaster. As my noble friend Lady Howe of Idlicote said, the effect of bad care on the bereaved lives on. That trauma never goes away.

The noble Lord, Lord Patten, pointed out the problems of bad or appalling care when decisions are not made properly over withholding or withdrawing food and fluids, or when patients and families are not involved. I am glad that the Minister has today given us an assurance that he is taking this very seriously. I must declare an interest here. I was part of the BMA ethics committee group which is shortly to publish guidance on withdrawing and withholding. I hope that it will set the profession right on what to do and what not to do to avoid bad care. The Liverpool Care Pathway which was alluded to by the noble Baroness, Lady Neuberger, and the advanced care planning tools are helping to make decision-making better at the end of life.

The noble Lord, Lord Colwyn, highlighted the complexities of end-of-life decisions. I was interested that so many noble Lords spoke about the present cost problems. The noble Lords, Lord Alton and Lord Cavendish, the noble Viscount, Lord Bridgeman, and the noble Baroness, Lady Neuberger, all spoke about the tension in establishing a partnership with the NHS and in obtaining funds. The noble Lord, Lord Carlile, alluded to the problems of the lotteries and the unforeseen consequences of actions taken on the Floor of this House.

I was, however, glad that the noble Lord, Lord Carlile, spoke about the need to celebrate life, because nearing the end of life is not necessarily depressing at all. Many people in hospices are cheerful, and many volunteers come back time and again because they say the hospice is such a happy place. The noble Lord's story reminded me of a paraplegic patient of mine who, against all the odds, managed to get home, where his wife amazingly coped with him for some weeks. When he died, his children decided that he should be buried in his Welsh rugby shirt and that the time of his burial should be exactly at the kick-off for the Wales-England match. We all laughed about it quite a lot. The importance of bereavement care shone through. I was glad that that was alluded to by the noble Lord, Lord Cavendish. Bereavement care, not only of adults but of children, is crucial. I hope it is not forgotten as we look at services.

The noble Lord, Lord Brennan, touched on a fundamental principle of the founding of the NHS—that of human dignity and equitable access for those in need, as well as the profound moral principle and serious political objectives which have to come together. Those words will ring in the ears of all who have participated today. He also spoke of the value to our society of the individual who is facing the end of life, and I hope that my Bill will be able to enhance that and ensure that they can contribute maximally for as long as they want.

Let me return to the vexed questions of Shipman, morphine and decision-making. In his study of decisions at the end of life, Professor Seel noted that a culture of sharing decisions with patients and relatives was evident. There is a slight problem with one of the questions in his survey, however. He asked, "In your estimation, how much was the patient's life shortened by the last mentioned act or omission?". That is a leading question; one could flippantly say it is a little like, "When did you stop hitting your wife?". It makes an assumption that the giving of the drug shortened life.

How has this happened? Over the years, the early physiology in animal studies showed that morphine given to animals which were not in pain depressed respiration. From that grew the assumption that morphine was a dangerous drug and was associated with addiction. The logical fallacies ran as follows: "Morphine is a good analgesic but it is an addictive killer. I must not harm my patients so I do not give it too often, but then I am pushed into doing so because pain in the dying is so severe. I give morphine only to the dying, but if my dying patients are given morphine and then die, perhaps it was my morphine that killed them". But there will always have been a last dose of a drug, as there will have been a last cup of tea and a last breakfast. That logical fallacy has carried on through.

Double effect occurs in some branches of medicine, including oncology. Potent drugs are given with the intention of treating a malignancy, killing off malignant cells. Sometimes they overshoot the mark; the patient has a bone marrow suppression, develops sepsis and dies. But we do not wring our hands and say, "You killed the patient with your oncological treatments". We say, "What did we get wrong with that dose and how could we have done it differently?". That is double effect—the intent was to treat the disease, but the outcome, unintended but foreseeable, was that the patient died.

What about morphine? The evidence that morphine is remarkably safe is increasing. I will not run through all the references, but an increasing number of studies show that morphine given properly to patients in pain does not depress their respiration, even patients with restrictive lung disease whom we would expect to be the most vulnerable. There have been some very good studies internationally; it is worth noting that the Dutch abandoned using opioids as a method for euthanasia because they found they did not work. Excellent studies have been done all around the world and more are coming forward. They are worth looking at. The principle of double effect is not good palliative care in its being invoked. You do not need it but you do need to treat patients properly.

I appreciate all the contributions that have been made. We shall all die one day, and many of us will need good palliative care when we do. That sobering thought should guide us to channel healthcare resources towards the needs of such patients, as well as towards those whose conditions can be successfully treated. Such action is indeed the mark of a civilised society, and I hope that the House will afford my Bill a Second Reading.

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