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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
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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.
1.58 pm
Lord McColl of Dulwich: 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
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“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,
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.
“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.
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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,
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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.
2.10 pm
The Minister of State, Department of Health (Lord Hunt of Kings Heath): 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.
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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
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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 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.
Lord Carlile of Berriew: 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.
Lord Hunt of Kings Heath: 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
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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.
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