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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” 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

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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.

12.05 pm

Baroness Gardner of Parkes: 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

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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:

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,

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.

12.11 pm

Lord Carlile of Berriew: 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

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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,

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

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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

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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.

12.21 pm

Baroness Greengross: 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

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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

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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.

12.30 pm

Lord Colwyn: 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.


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