Palliative Care Bill [HL]

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.