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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
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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,
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
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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.
11.40 am
Lord Lester of Herne Hill: 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.
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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:
pain relief that may shorten life as a consequence—
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
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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—
or, I would add, would hasten,
- “the patent’s death, the doctor could still be held to have positively intended the patient’s death”.—[Official Report, 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
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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.
11.49 am
The Lord Bishop of St Albans: 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.
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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.
11.57 am
Lord Brennan: 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.
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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.
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