Palliative Care Bill [HL]

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 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, "““the research perspective in relation to the Psychological Dimensions is a relatively new in the specialist Palliative care field but is growing and changing alongside other developments in the general field of health and social care””." 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: "““Clinicians are aware that they need not only to take account of the best practice evidence base for their work but also to work as ‘scientist practitioners’. That is, to take a systematic approach to their work and treat each situation as a case study. This may take the form of a quantitative inquiry, using standardised measures to ascertain changes in symptoms, pain or it may be using more qualitative approaches such as new methodologies; for example Mckardle and Reason (2006) … There is also an assessment currently being developed in the UK by clinical psychologists based on work in the US. This assessment is known as the Distress Thermometer … and it aims to help the individual name and rank their distressing symptoms across a number of domains including spiritual, social, psychological and physical. Once the individual has made a decision about what their most distressing symptoms are the multiprofessional team can work together with the family and the individual where appropriate to try to alleviate/ameliorate those symptoms as far as possible. Preliminary results show that the DT is enabling nursing and medical staff to move into domains that they would previously have found difficult and also to make more appropriate referrals to the relevant other professionals … It is therefore imperative that psychologically trained practitioners are part of the core multiprofessional team to offer guidance, support and supervision to the staff and also appropriate assessment interventions for the individual patients, their families and following death for the bereaved as appropriate””." 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 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 levels 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: "““Palliative Care is not only to help you die peacefully but also to live until you die””." 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, "““patients admitted with long term degenerative illness often request that death is aided because they do feel initially repulsed with their body. But good palliative care from an appropriate multi-professional team resulted in the request being withdrawn as improved comfort, quality of life and learning to cope better with their illness have made life more bearable. Every single one of the cases I have personally witnessed has expressed their gratitude to us for not acting upon their original request””." 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.