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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
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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
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12.35 pm
Baroness Masham of Ilton: 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
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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
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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.
12.48 pm
Baroness Howe of Idlicote: 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.
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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
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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.
12.57 pm
Viscount Bridgeman: 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
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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.
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