Palliative Care Bill [HL]

My Lords, my noble friend Lady Finlay of Llandaff has rendered a great service to your Lordships' House by introducing her excellent and timely Bill. I think that we were all moved by the powerful speeches that were made in this debate, and by none more so than those of my noble friends Lady O’Neill of Bengarve and Lady Masham of Ilton, and of the noble Baroness, Lady Gardner of Parkes. I was privileged to meet the late husbands of the noble Baronesses, Lady Masham and Lady Gardner, and I am certain that we were all deeply affected by the experiences which they shared with us today and would want to be associated with the condolences which have already been expressed. My noble friend’s Bill is urgently needed and the speeches that we have heard have explained why. The UK leads the world in palliative care, but its universal application is compromised because this crucially important service remains underfunded. The Bill is not about assisted dying or euthanasia, which rightly remain entirely outside the scope of this measure. However, as the noble Lord, Lord Colwyn, argued earlier, it provides us with a radical alternative to arguments for the killing of the terminally ill or disabled. As my noble friend told us, palliative care is about enhancing quality of life and enabling patients to live as actively as possible until they die naturally, peacefully and, wherever possible, with their families around them. The World Health Organisation describes palliative care as improving, "““the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement””." By 2031, 23 per cent of the population will be at pensionable age or above, of which 12 per cent will be over the age of 75, in comparison with about 8 per cent at present. As people live longer, the need for palliative care services will clearly increase hugely, and we need to confront the issue now to plan well for the future. That is why the Bill is so timely. It is unacceptable that two-thirds of hospice funding still comes from the voluntary sector. The National Council for Palliative Care has recently released a funding survey which states that around 60 per cent of hospices are experiencing a real-terms decrease in the value of the funding contributions from the National Health Service. I know from my own involvement over many years as vice-president of JOSPICE—St Joseph’s Hospice Association—that its hospices at Thornton on Merseyside and at Ormskirk in Lancashire, as well as its hospices overseas, run at full capacity. At times, it has been a desperate battle to raise the funds to ensure that they can meet those needs. The quality of palliative care in hospices such as these and all over Britain, as we have heard from all parts of your Lordships' House today, has made huge strides during the past 10 to 20 years, but its quantity and distribution simply have not kept pace. As a result, there is a postcode lottery for the terminally ill, as was said in the preceding speech. Inadequate funding is allotted to palliative care within the NHS and there are not enough trained specialists in practice. Three years ago the NHS Cancer Plan promised an extra £50 million a year specifically for specialist palliative care. This addition, made by the Government, is of course extremely welcome but it is thinly spread across the country. Progress is slow and not all the resources are reaching front-line specialists. The National Council for Palliative Care estimates that, while 95 per cent of patients using hospice or palliative care have cancer, 300,000 people with other terminal diseases are excluded. Yet even for those with cancer the provision is far from satisfactory. According to Marie Curie, more than 155,000 people die of cancer every year, yet Help the Hospices points out that there are only 3,250 hospice beds available, and 2,489 of these are supplied by the voluntary sector. Half of all patients diagnosed with motor neurone disease—an issue raised powerfully by the noble Lord, Lord MacKenzie of Culkein—die within 14 months of diagnosis. Yet in 2005, the Motor Neurone Disease Association identified that only 39 per cent of these patients were referred to specialist palliative care services. Because hospices have often been funded by cancer charities, some only admit one person with MND at a time and access can be difficult. Is it any wonder that people often become deeply depressed or suicidal when diagnosed with MND, particularly when their fears can be stoked by the pro-euthanasia lobby? Palliative care does not require expensive treatments or technology because its essence lies in specialist knowledge of how to use pain-relieving drugs and how to give holistic care to ease the dying process. A relatively small refocusing of NHS resources would bring disproportionate benefits compared with other branches of medicine. Only a minority of us will need cardiac or neuro surgery but one in two of us will be in need of good palliative care when we die. In the recent debate in your Lordships’ House initiated by the noble Baroness, Lady Jay, which has been referred to, I was disappointed to read some of the scepticism that was expressed about the holistic nature of palliative care, especially the spiritual aspects—a point touched on at the outset of the debate by my noble friend and by the right reverend Prelate the Bishop of St Albans in his very moving speech. The World Health Organisation description of palliative care that I referred to earlier specifically refers to the spiritual support provided by palliative care and the desirability of providing that support. The importance of this spiritual support is reflected in guidance from NICE. I was interested to read some material from the Association of Hospice and Palliative Care Chaplains on this point, which states: "““Spiritual Care has always been central to the philosophy and practice of Palliative Care. Palliative Care seeks to be holistic in its approach to its care of persons with life-threatening illness and to integrate the physical, social, psychological and spiritual so that patients and carers may come to terms with their experience of dying as fully and creatively as they are able””." At a time when fears are being expressed about the marginalisation of faith groups in the delivery of public services, I look forward to receiving the Minister’s assurance that the Government, like WHO and NICE, recognise the importance of the spiritual dimension of palliative care and will ensure that this support service is appropriately resourced. By extending palliative care to all terminally ill patients, as my noble friend’s Bill attempts to do, the Government would save the NHS money. Marie Curie Cancer Care in its Dying at Home report points out that every pound invested in home palliative care services will free up £2 in the NHS. This is an attractive proposition, yet despite increased funding commitments the number of cancer patients dying at home has remained the same—a point made by the noble Baroness, Lady Howe of Idlicote, and others—with 80 per cent of resources allocated to specialist palliative care being allocated to hospital-based care, and that should change. A Help the Aged report found that older people are, "““less likely than younger people to receive support at home, in hospital or in a hospice, or to receive attention from GPs or district nurses during the last year of their lives. Older people are often described as the ‘disadvantaged dying’””." But children are at a disadvantage too. I am a patron of the Zoe’s Place Trust, a charity that runs two baby hospices, one in Liverpool, which I helped to establish, and the other in Middlesbrough. There are plans to open a third in the Midlands. When one considers that children’s hospices receive only approximately 5 per cent of their funding from official sources whereas adult hospices receive 30 per cent from the same sources, it comes as little surprise that many children’s hospices struggle to survive. It costs an average of £2.5 million to run a children’s hospice service each year. In a joint submission by the Association of Children’s Hospices and the Association for Children’s Palliative Care, provided for me by St Francis Children’s Hospice, Manchester, which I have visited and where I am a patron, it is estimated that 25,000 families in the UK are coping with morbidity of a child, adolescent or young adult. They say that 3,400 children die annually with 80,000 to 100,000 family members affected and requiring palliative care and support. The submission is an excellent document in which they describe their, "““shared vision of a good life and a good death””," a point so eloquently expounded upon earlier by the noble Lord, Lord Carlile of Berriew. I commend that submission to Members of your Lordships’ House for further study. But if holding the line of existing provision is extremely difficult, what of expanding the provision of children’s hospices? Hospices such as Zoe’s Place are extremely grateful for the £27 million, spread over three years, which the Government have recently made available to them, in the form of so-called Section 64 grants by the Department of Health. But these funds are to help with running costs of existing hospices. What we badly need are more hospices. It is highly desirable that the Government should help with capital costs; for example, by providing matching funds, to enable charities to expand the total provision of hospices, especially for the young. No fundraising is easy, but raising cash to sustain existing premises, which people can see and actually use, is probably easier on the whole than getting support for a project which is still on the drawing board. So what are most needed are the one-off grants to enable new hospices to be built. Comprehensive palliative care legislation should be our priority. I am sure that my noble friend has that right. I conclude by addressing an argument that was put by some Members of your Lordships’ House today—that a Bill of this nature can quite happily coexist with the legalisation of euthanasia and physician-assisted suicide. We have heard much about patient choice and autonomy in one or two of the speeches. But if personal autonomy becomes a creed, we descend into barbarism. If public reason and statute are to subsist on a diet of choice, autonomy and claimed rights, it will inevitably lead to the emaciation of values which have hitherto underpinned the common good. Hospices and palliative care are surely among the most striking representations of a practical working-out of the common good. My noble friend is therefore absolutely right explicitly to leave out such an approach from the scope of this Bill. Far too little consideration is given to the implications of replacing an approach to suffering based on relief with an approach based on the ending of life. What does it do to someone who has a disability or a serious illness if you constantly drip-feed them the lie that they would be better off dead? If, ad nauseam, we persist in telling them that their lives have no value, they will doubtless come to believe it. We rightly hear a lot about dignity, but where is the dignity in an approach predicated on an assumption that your life holds no further worth? Telling someone that they would be better off dead represents a failure in what the noble Lord, Lord Carlile, rightly referred to as our duty to care. ““Care”” and ““kill”” cannot be used as synonyms; nor can they be cohabitees, coexisting alongside one another in a hospice established to provide unconditional love, not a lethal injection. It is simply nonsensical to pretend that someone’s life has value if you simultaneously insist that their very existence is of negative value. This fallacy that autonomy is a superior commodity to all other considerations has profound implications for the way in which we treat the sick. It also has profound implications for those who care for them.