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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 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.

Lord Lester of Herne Hill: My Lords, nothing in what I said suggests the opposite, does it?

Lord Alton of Liverpool: My Lords, the noble Lord, who was a supporter of the Bill of my noble friend Lord Joffe in favour of assisted suicide, and who has represented the Voluntary Euthanasia Society on occasion in the courts, has expressed his views on other occasions. Members of your Lordships’ House may measure them against what he has said today.

We have no right to tell a physician that they must judge a person’s life as lacking worth and that it should, for this reason, be ended. In such a regime, the doctor is merely an automaton or hired gun. In the last analysis, if a doctor is to do the killing and be answerable in law, he needs to have considerable

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reason to justify doing so. If we adopt that approach, our hospices will become charnel houses. To die with dignity, we do not need doctors to kill us. Our best defence against a descent into such a murky world remains our excellent hospice movement and an internationally respected medical profession that is committed to the highest possible standards. The Bill seeks to achieve the constant improvement of palliative care, and I am very pleased to support it.

1.30 pm

Baroness Emerton: My Lords, I join other noble Lords in congratulating my noble friend Lady Finlay on introducing the Bill, which I support. I declare an interest as a retired nurse, although I am not a specialist in palliative care nursing. My concerns have been raised recently by the vast increase in the public’s disquiet about the care of the terminally ill in general hospitals and the community setting. This is supported by Healthcare Commission evidence, to which my noble friend Lady Finlay referred, that in excess of 54 per cent of complaints received about hospitals show that families received contradictory or confused information from different staff caring for relations. In other complaints, relatives felt that they were unprepared for the death or had no time to arrange for family members to be present. This overwhelmingly confirms the need for an end-of-life care strategy, and I am delighted that a committee under the chairmanship of Professor Michael Richards has been established. Other noble Lords have already referred to this.

I understand that there are various sub-groups, and although there is no specialist palliative care nurse on the central board, I hope that nursing will be represented on these working groups. I hope that the Minister will be able to reassure me about that, as I am sure he will recognise, as do other noble Lords, that 80 per cent of direct care is delivered by nurses, who provide a very important part of the care programme and have much to contribute by observing changes in the condition of the patient through patient contact, in addition to providing direct care.

Inevitably, the nurse has a close professional relationship with the patient and family, and plays a most important part in carrying out the most intimate care requirements: ensuring that pressure areas are treated to avoid pressure sores, the mouth is kept moist, and nutrition and hydration needs met; monitoring levels of pain and discomfort and treating accordingly; and maintaining the dignity of the patient throughout. Nothing is too basic in holistic care. The care must be holistic; that is, it must meet the physical, mental and spiritual needs of the patient, as stated in the Bill.

As a student nurse in the introductory course 54 years ago, I remember being told by the tutor—the noble Lord, Lord MacKenzie of Culkein, mentioned the value of good teaching—that holistic care requires not only the direct treatment of physical symptoms but that often there are latent issues affecting the mind or spirit. I was also told that careful observations by the nurse often reveal what

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these issues are, and that they may be one of the root causes of the patient’s discomfort and require attention and even treatment. Likewise, a patient in a terminal stage of illness who is suffering from a physical condition often has a latent psychological or spiritual need that is not immediately manifested, but the need for holistic care by the palliative care team for the patient and family is still vital. It is for these patients that extra time is needed to determine the underlying cause of the problem. The nurse is often the first to pick up the signs because of their major involvement in the treatment of the patient, but this calls for sensitivity and an ethical approach when dealing with often sensitive, personal issues. If the nurse is not able or equipped to deal with the particular situation, they need to refer for help. A team taking a holistic approach values the worth of each member’s contribution.

Dr Christine Kalus, consultant clinical psychologist and chair of the British Psychological Society working party on end-of-life issues, states that,

My noble friend Lady Finlay has already mentioned that. The benefits of the specialist being dedicated to taking a “whole person approach” means that researchers can make a variety of research methods both quantitative and qualitative, to approach an exploration of the questions that this complex and challenging field offers.

Dr Kalus continues:

As the noble Lord, Lord Cavendish, has already stated, it is also helpful to remember the words of Albert Einstein, who said that not everything that matters can be measured and not everything that can be measured matters. The Bill also includes the words “social” and “spiritual”. Time does not allow me to

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pursue these, but I must emphasise that both are important, as the right reverend Prelate the Bishop of St Albans so eloquently explained.

The Bill also sets out regulations and standards. A variety of checks are, of course, already in place. For example, hospices carry out rigorous self-assessment that is then audited by inspection by the Healthcare Commission. The relevant clauses cover patient focus issues, safety, governance, clinical cost-effectiveness and the environment, amounting to 74 pages of detail. However, these checks are only for hospices, not for hospitals or community care in the patient’s home. One important factor that cannot be ignored is that the level of development of pressure sores is very low with good basic nursing care when nurses have time to perform this vital aspect of care. This is not confined to the palliative care patient; the need for such care applies to all patients who are too ill or too weak to move themselves around enough to avoid the risk of pressure sores.

The Bill would give the Minister powers to create regulations and standards. One hopes that such regulations will be unnecessary if there is a culture change in openness and transparency and in trust between patients’ families and team members. Dame Cecily Saunders stated:

However, that is not always an easy assignment, certainly not for the patient, for the family or even for the palliative care team. It takes time, energy and commitment to overcome what might seem to be insoluble problems, but they can be overcome with the special attention that they deserve.

For example, the Royal Marsden Hospital, the largest comprehensive cancer centre in Europe, has a large palliative medicine department. It receives approximately 40,000 new patient referrals a year, and of those the department of palliative medicine sees around 1,200 new patients a year. Its aim is to control pain and distressing physical and psychological symptoms and to discharge the patients to the community services close to their home. Despite its best efforts, approximately 500 patients die in the hospital.

So-called assisted dying is outside the scope of the Bill, but as the topic has been raised by one or two noble Lords in this Second Reading debate, I will make a comment. Notwithstanding the physical and mental suffering of those patients, the palliative care team of the Royal Marsden reports that less than one patient a year asks for help to die. The palliative care team seeks to address the underlying cause for that request, and over the years of caring for thousands of terminally ill patients, not one has ultimately convinced the team that it was the answer. The director of nursing care of Fair Havens Hospice, Catherine Wood, states that,



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Surely that demonstrates that patient choice can be addressed. The hallmark of a civilised society is to care for the vulnerable, the mentally ill, the old, the young and the infirm.

The Bill provides the way forward to deliver appropriate end-of-life care to a standard of excellence that already exists in places such as the Royal Marsden Hospital, including the excellent work of hospices. It is a standard that surely all patients and families deserve and should be able to experience, as so movingly expressed by the noble Baronesses, Lady Gardner of Parkes, Lady Masham and Lady O’Neill.

1.42 pm

Baroness Neuberger: My Lords, I, too, congratulate the noble Baroness, Lady Finlay of Llandaff, on the Bill. I support it, and I wish it well. I declare an interest as one of the founders and now a patron of the North London Hospice and as former chief executive of the King’s Fund. I have a long-standing interest in palliative care, and I have written extensively about caring for dying people. I also want to congratulate the noble Baroness, Lady Finlay, not only on introducing this Bill so beautifully and ably today, but on her birthday. What a day to introduce her Bill.

I, too, pay tribute to the very moving speech made by the noble Baroness, Lady Gardner of Parkes, who made it all too clear to us why we should support the Bill; as did the noble Baroness, Lady Masham of Ilton, in her account of her husband’s death; and as did the noble Baroness, Lady O’Neill of Bengarve, in her very moving account of her brother’s death, particularly about the lack of access to the drugs that would have made a difference if palliative care services had been universally available 365 days a year, 24/7.

This Government are to be commended for the work that they have put into cancer services. The cancer plan and the work of Professor Mike Richards as the cancer tsar have been remarkable. We are, as many other noble Lords have mentioned, still awaiting further news on the exact timing of the end-of-life strategy on which Professor Richards and others are engaged, as we were a few weeks ago when we last debated palliative care. I hope that the Minister can tell us how he proposes, once he gets the strategy, to use it to ingrain support for palliative care into the National Health Service. We seem to have reached a watershed in provision of palliative care services. While children’s hospice services have rightly grown, they are still woefully under-funded, as the noble Lord, Lord Alton of Liverpool, made clear in his speech. There is now a review of palliative care services for children and a campaign seeking guaranteed funding for palliative care services for those children. While palliative care services for patients with cancer now have a greater reach, although by no means far enough, palliative care services for people with other conditions are distinctly hit and miss, as other noble Lords have mentioned.

The Government published their summary of the progress of the NHS end-of-life care programme last March. And there has been progress, but, as many

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people will tell you, by no means enough. In nursing home care, it is by no means common to receive proper palliative care at all alongside the general nursing care that is ordinarily provided, although the best nursing homes provide an excellent service. Yet, in all too many care homes, the palliative care that would afford the human dignity for dying people of which the noble Lord, Lord Brennan, has rightly reminded us, is not available. The noble Baroness, Lady Greengross, was absolutely right to emphasise, in the name of the noble Baroness, Lady Murphy, who is not in her place today, the poor support for people with dementia, especially when they are dying.

The Department of Health introduced its Introductory guide to end of life care in care homes last April, co-authored with the National Council for Palliative Care, and it set out what patients can expect, but, as yet, it is not enough. PCTs vary in how much they pay, and to whom, to provide palliative care services. This cannot be right. There is rarely a day when I do not receive a letter or an appeal asking me to support the campaign of one hospice or another around the country or one palliative care service or another somewhere. That must be true of all noble Lords here today. I also hear about palliative care teams threatened either with closure or, as is more common at the moment, asked to do more generic and less specialist work. So the noble Baroness, Lady Finlay, is right to try to force the Government to do more to support palliative care and to mainstream it throughout the NHS.

We know that hospices are dearly loved. I was a speaker last week at the second Cecily Saunders memorial seminar at St Christopher’s Hospice in south-east London, which Dame Cecily founded. It was well expressed that there is huge appreciation, huge support and considerable irritation that so much of the money has to be raised voluntarily and that the National Health Service puts so little into palliative care services, comparatively speaking. In addition, the National Council for Palliative Care makes it clear that in real terms the value of the Government’s existing contribution to specialist palliative care services is being eroded, despite their 2005 manifesto pledge to double the investment.

When it comes to beds being funded in hospices or the funding of services provided by hospices, full recovery cost is rare, so that providing services for the NHS means that the voluntary sector is out of pocket. That is outrageous—indeed, you might say that it is even worse than outrageous. In most cases, funding from the NHS for a percentage of beds in a hospice is on a year-by-year basis, often decided after the financial year has begun. There is no good reason why those contracts could not be drawn up with at least three years to run, and no good reason why government should not issue the strongest of guidance to the service, however strapped for cash it is, that this approach to the hospices is bound to cause chaos and resentment, and fits singularly badly with a government approach that wants to increase hospice an palliative care services.

The present figures show a gap of some £150 million to £200 million between what hospices

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spend on NHS services and what the NHS actually pays for—other noble Lords have drawn attention to that—and the gap is widening. It is disgraceful. The noble Lord, Lord Patten, was right to draw attention to the plight of the Pembridge Unit, and I am sure that many of us have received letters from that unit or have seen other people lobbying on its behalf. Its funding shortfall is a disgrace—and, of course, it was originally a National Health Service service.

The noble Viscount, Lord Bridgeman, is right to point out the difficulty that St John’s Hospice, even with the support that it has from the rest of the charity, is experiencing. From all sides of this Chamber, we could go on and on raising individual hospices or individual services that are having some kind of difficulty.

Meanwhile, 95 per cent of those who access palliative care services have cancer, although only 25 per cent of people die from cancer. There are gross inequalities in whether you can access palliative care services if you do not have cancer. It depends almost entirely on where you live. My parents lived in north Camden and both were fortunate enough to receive superb palliative care at the end of their lives, although neither suffered from cancer. I echo the words of the right reverend Prelate the Bishop of St Albans about spiritual care. My mother was a refugee from Nazi Germany. She was not a religious woman; having a rabbi as a daughter was a source of deep disquiet to her. However, at the very end of her life, she kept talking about going home. She did not mean going home to meet her maker; she meant going home to Germany. It was the combination of a specialist palliative care nurse and a district nurse, with their training in spiritual and psychosocial support, who were able to work out what she was saying, precisely because they had the skills and broad ability to reflect. Those are not widely available if you have not had that training and you are not sufficiently clued-up. Had my parents lived across the border in Islington, those services would not have been available for them. Had they lived across the border the other side, in Westminster, those services would have been partially available—very possibly at St John’s Hospice.

This is not about rich or poor—some poorer areas have far better palliative care services than wealthy ones; nor is it about whose need is greatest. When we look at the spread of hospice and palliative care services, it is largely about history. It is about where services happen to grow up and where voluntary groups started them off. There simply is not enough provision—particularly not for people with conditions other than cancer. People’s own preferences for where they want to die are largely going unmet. The noble Lord, Lord MacKenzie of Culkein, was right to draw our attention to the very different treatment of two friends dying from motor neurone disease. These differences are deeply disturbing. We keep hearing of this. In one place it is good and in another it is bad; we must be able to do better than that.

I want to take a more general look at the palliative care services that are provided by primary care services. Although 60 per cent of acute care trusts are

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now using the Liverpool care pathway, only 28 per cent of GP practices are doing so. Coverage for all patients rather than cancer patients alone ranges from 50 per cent for GP practices to 97 per cent for community hospitals. Far too often, patients do not get their preferred place of care, despite the preferred place of care advanced planning tool that patients hold for themselves and through which they can discuss their thoughts and choices with healthcare staff.

There is a real variation here. If you talk to people who run services, they will tell you that they want different things. In a study conducted by the King’s Fund a couple of years ago, people prioritised different services that they wanted to make the service work better. GPs prioritised specialist services such as specialist nurses and in-patient beds. District nurses prioritised daytime district nursing. Marie Curie nurses wanted night cover—Marie Curie nurses are highly valued but not always available. District nurses also wanted specialist assessment and in-patient beds. Like GPs, they rated out-of-hours GP cover as a lower priority but, being district nurses, they highlighted night district nursing services as a high priority. I could go on.

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