Select Committee on Health Written Evidence


APPENDIX 31

Memorandum by St Christopher's Hospice (PC 41)

  Founded by Dame Cicely Saunders in 1967, St Christopher's was the first modern hospice, now providing the highest quality care to over 1,800 people each year in its 48-bedded Hospice, and in people's homes. It provides a comprehensive palliative care service to an ethnically and socially diverse area in south London.

  St Christopher's provides specialist hospice and palliative care, offering expert pain and symptom relief, nursing care and psychological, social and spiritual support and care to people with life-threatening illnesses as they approach the end of life and to their families and carers during the illness and after death. This work connects with non-specialist health and social care provision in the area it serves. It carries out research and provides extensive education in palliative care locally, nationally and internationally, involving its clinicians and practitioners, based on its daily experience of service provision.

EVIDENCE TO THE SELECT COMMITTEE

  St Christopher's is a member of, and supports the evidence submitted by, Help the Hospices. This evidence is supplementary, and builds on our current direct experience over nearly 40 years of providing palliative care, which has developed to offer a comprehensive service.

  Everyone dies; everyone will be bereaved. The universality of this experience is why people want the security of good care around the end of life and during bereavement; it is why there is such community support through fundraising and volunteers for the hospice movement. The focus of our evidence is on the importance of interweaving complex aspects of care at a high standard within palliative care to enhance the resilience of communities and wider non-specialist care services.

  When families and communities and health and social care services require a response to extremely difficult care needs, they need the certainty that it can be made available. Good specialist palliative care offers a security that enables non-specialist, community and informal care to function. It is in this way integral to the fabric of all caring services.

  Our experience suggests that a comprehensive service must include a wide range of elements, implemented flexibly. By way of example, St Christopher's offers:

    —  in-patient medical and nursing care led by consultants in palliative medicine and experienced and specially qualified nurses, also providing an important training site for medical and nursing professionals;

    —  home care led by clinical nurse specialists in teams focused on each of our five local-authority and primary care trust (PCT) areas, to strengthen liaison with community services;

    —  home nursing and other care to patients in their own homes, supplementing district nurse and other community services where palliative care patients have needs requiring additional services;

    —  our home care services will go out to patients 24-hours, seven days a week, rather than the more limited NICE guideline of 24-hour advice;

    —  extensive day care and creative living support, discussed more fully below because we think this is an area that demands greater commitment and clarity;

    —  in-patient and home care multiprofessional teams that include social workers and chaplains;

    —  social work is necessary to assist patients in resolving family and community relationships and emotional responses to their impending death and bereavement, and to facilitate access to a wide range of public and private services. People and services are sympathetic, but it is not easy to ring up an official or company to say: "please help me with this, I'm dying";

    —  for the same reason, we are increasing our complement of welfare advisers because of the demand to help with debt problems, homelessness, severance from work, private and public pensions and allowances. A recent audit of this service has shown that there is a particular burden of housing and council tax benefit problems, since these benefits are notoriously badly administered, but in particular because they change every time people's circumstances change, sometimes weekly, and families with a dying member and in bereavement often experience successive rapid changes in circumstances;

    —  chaplains to provide spiritual care to help people with thinking about their lives, the contribution they have made to the world, the meaning and value of their life, their value to their community and family, and many other spiritual issues; for people with a faith commitment, religious services are necessary; we regularly baptise and marry and perform funeral and other relevant religious services;

    —  psychiatric treatment, since a large minority of dying people and their families have symptoms of anxiety and depression;

    —  physiotherapy is an important treatment for many symptoms of dying patients and we offer a general lymphoedema service responding to fluid retention problems; and

    —  complementary therapies such as acupuncture (where there is research evidence for effectiveness in some areas of pain relief and reduction of stiffness), aromatherapy, hypnotherapy, massage and reflexology are appreciated by patients as experiences and also because they offer the chance for someone with a damaged body and disrupted body image to receive gentle physical care.

  All these are incorporated into a complex texture of care that responds to the particular needs of the communities we serve.

CHOICE

  Patients' choice of where to die is not the end of choice in palliative care. Most people choose to die in their own home, and palliative care services set out to achieve that wherever possible, and often manage to do so. In making this choice, patients often have an image of dying peacefully surrounded by their family. Many will achieve this.

  However people become aware of the particular effects of an illness on them and their families, their choices will change; services have to be flexible to accept and respond to this. Our experience is that choices are made throughout the patient's journey, not only by the patient but also by their carers, families and others around them. Dying in your own home may not be the best choice where the patient is being physically or sexually abused by a carer or financially abused by a relative. Dying in your own home is not so attractive when it is an isolating flat with little furniture and poor facilities. Dying with your family around you is not the picture for many elderly people whose family are estranged or scattered across the world. Dying in your own home of a serious illness may mean that even a loving family cannot manage complex and demanding care needs.

  The complexity and changing nature of these needs and the choices that people must make is the reason why palliative care must be established and managed to interweave a wide range of professional and community responses together in a complex texture of public and voluntary services and personal help.

  Recommendation: government policy needs to recognise the personal importance of care around the end-of-life and in bereavement to many people, and the importance of managing services in such a way as to interweave services not to intervene or impose but to respond to care and support needs in ways that increase people's resilience and the resilience of communities around them to the experience of dying and bereavement.

DAY CARE AS A CHOICE

  Serious illness restricts social opportunities and stimulation. There is no point in preserving life, reducing the effects of symptoms and treating physical and psychological problems if people cannot make use of the life left to them. They might wish to complete important life tasks—to see the new grandchild on the other side of Europe, to fly an aeroplane, to renew a relationship with an estranged child have all been recent objectives for some of our patients. At least, they do not want to stare at four walls all day and every day, and be a boring nuisance to family and friends because all they have now is their illness. Worthwhile palliative care must meet these needs, and this goes well beyond health care objectives. St Christopher's day centre offers a stimulating social environment and the chance for a day away from staring at four walls. Among the options available, which vary from time to time are:

    —  Art, drama, sculpture, pottery, music, horticultural and other creative therapies—we use the artistic work as a means to help people develop stimulating social and groups relationships and engage in discussion about issues that are important to them.

    —  Visits with skilled nursing and social support to events and social opportunities, such as concerts, parks, pubs, restaurants.

    —  To share ideas and experiences with others in the same situation, develop new social relationships.

    —  Social support group.

    —  Through Rosetta Life (see www.rosettalife.org.uk) to give people the chance to express themselves though digital and video photography and the creative use of internet presentations.

  Day care forms a crucial element in a comprehensive palliative care service. It is not everyone's choice, but it offers:

    —  Respite for carers at home.

    —  Stimulation for patients, who are usually isolated from social contact by the restrictions imposed by their illness.

    —  Education and self-development for patients until their last moments of life.

    —  Stimulating social relations for patients with other people who have something new to contribute from their experiences.

  We have a current research project assessing the impact of day care and some examples of the benefits that patients felt they gained are given in the Appendix.

  Two emphases in day care focus on:

    —  nursing and medical treatment on a day basis; such day provision can otherwise often be little more than glorified waiting rooms; and

    —  comprehensive social care designed to give patients stimulating new experiences, to improve education and self-development and to improve social relations.

  Research shows that patients who attend value enormously the experience they have in day care. However, recent research has aggregated the wide range of types of day care, so it has been hard to disentangle what is beneficial and what is not. There is a need to identify the value of different kinds and mixes of provision. In particular, simply using day care as a diversion while waiting for medical treatment may reduce worthwhile outcomes.

  Recommendation: identify and support a small number of beacon day centres to achieve a comprehensive range of provision and evaluate outcomes of different elements of the provision with a well-managed research study, to achieve valid guidance on appropriate services.

EQUITY AND EXCLUSION

  The availability of specialist palliative care across the country is unequal, and the mode of provision varies. This may be appropriate, since palliative care in our conception should respond to the needs of the community and individuals it serves. However, comprehensive provision that meets the World Health Organisation model of providing for both health and psycho-social and spiritual care needs in an integrated way is central to an equitable provision.

  Psychological and social needs may be raised in particular ways for different ethnic and social groups, and it is important that social divisions do not hinder appropriate care for the populations serviced, or exclude particular groups. Information about the palliative care needs of different population groups is not easily available, and to allow an appropriate response, health and social care services should work to identify population needs to guide the development of local services.

  Recommendation: The Government should ensure that PCTs and other commissioners work to identify palliative care needs of the particular population and social mix of their areas, and should fund research to identify the particular needs of specific population groups.

COMMUNICATION BETWEEN CLINICIANS AND PATIENTS

  Much of the concern about communication has been focused on delivering "bad news", because of evidence that this has been handled badly in many situations. The position has been much improved even if more work needs to be done. However, we wish to emphasise the importance of communicating a sense of hope, optimism, personal worth and value of patients, families and their carers, of concern for their resilience and strength in facing a difficult time in their lives and of preparedness to be alongside them in facing their difficulties. It is also important to intervene to help patients communicate with their carers and families, even where their physical symptoms and the psychological state and social relationships of those involved are fragile. This does not always mean speaking about matters of difficulty, it also involves making judgements about what people want to communicate and how, and the use of metaphors and mechanisms for communication: art, music, religion, drama and other opportunities for indirect communication and self-expression are relevant. Research carried out at St Christopher's recently published by Rachel Stanworth (Recognizing Spiritual Needs in People who are Dying, Oxford University Press, 2003) illustrates in relation to spiritual metaphor the complexity of communication that may take place and that professionals in this field need to be able to deal with.

  Recommendation: Guidelines on and regulation of specialist palliative care services need to research and recognise complex communication needs.

QUALITY

  Palliative care includes specialist medical and nursing care, both for in-patients and for patients at home, but essentially it offers extremely high-quality multi-professional care by well-qualified staff. The evaluations given by our patients of the care demonstrate the high quality of care that would be possible to provide for people moving towards the end of life, mentally and physically frail and with medical conditions affecting their social life. Such care is not routinely offered to people whose deaths are the result of non-cancer conditions. This is a fundamental inequity in health and social care provision.

  Recommendation: research to establish the applicability of the lessons of palliative care skills and service organisations for long-term health and social care, particularly of elderly people and of people with long-term illnesses and disabilities.

REGULATION

  Hospices are regulated by the National Care Standards Commission, being treated as a special category of independent hospital, and will shortly be regulated by the Commission for Healthcare Audit and Inspection. The experience of regulation by the NCSC has been marred by a formulaic approach. For example, a glance at the standards will show that they are primarily about the production and availability of policies and procedures, rather than the assessment of actual care. Another example is the requirement to report deaths every 24 hours, an important indicator of something going wrong in hospitals, perhaps, but surely inappropriate as an indicator for hospices, where care for people dying is an important aspect of their existence. Some requirements are unreasonable for a relatively small charity. For example, a requirement to translate all the contents (including extensive documentation) in an NCSC-specified patient care handbook into numerous languages applicable to our population, ignores the extensive printed information we already provide to patients in plain English and the availability of audiotapes for people with sensory impairments and interpreters provided at our expense for people whose first language is other than English.

  Recommendation: careful establishment of the CHAI process so that it focuses on patient care outcomes rather than procedural compliance with inflexible guidelines.

USER INVOLVEMENT

  A crucial aspect of quality is extensive and increasing user involvement. St Christopher's has played a leading role in introducing user involvements as an important aspect of its services and developing user involvement nationally and internationally. Two brief published papers on our experience and approach are attached as appendices.[17]

  There are two aspects to involvement:

    —  over individual matters concerning a user's own situation, strengthening interpersonal interaction between client and worker, within the context of assessment and intervention. Thus, we see working with a user as partnership, and see the responsibility as to create an agreement about mutual goals that reflect our professional knowledge and experience and the personal and social aims of patients and those around them. We avoid doing things to and for patients, carers and their families.

    —  over service development, where the collective voice of service users can make a difference to the planning and operation of services. Here we have a consistent process involving questionnaires to patients, those close to them and visitors to the Hospice, regularly analysed and reported, supported by user forums which make their own comments, receive reports of questionnaire analysis and make suggestions and receive a report back about action taken. We get very high satisfaction ratings, so that every individual detailed comment is needed and is crucial to providing a individualised response to a very diverse user group. Individual comments give us ideas for improvements, as well as contributing to a collective view. Results are taken very seriously at clinical governance meetings of managers and a trustee held every two months. In addition the Trustees' services committee reads and comments on the detailed reports every time they are produced.

  Among the outcomes of user involvement that we have experienced are.

    —  Enhanced self esteem and control of their lives for patients.

    —  A more satisfying experience of using health and social care services for patients.

    .—  More accessible, sensitive and accountable health and social care service.

    —  Significant service innovations.

    —  A greater sense of ownership by patients, carers and their families of the service. This applies to ownership of both the whole service and of what happened in individual cases.

  Recommendation: user participation practices and outcomes should be a crucial part of quality audit and regulation.

GOVERNMENT POLICY

  The Cancer Plan has delivered some important improvements in services, but in many areas the money for palliative care has been spent catching up with adequate provision. Similarly, while the NICE guidelines set a reasonable basic standard, they focus on and only fully represent needs in the health care aspect of palliative care; they do not, of course, set out wider standards. In particular, the detailed funding recommendations, which will guide allocations of funding to achieve equitable standards, need to include the full range of provision, rather than just in-patient care, which may be the most expensive care per patient, but is the least important part of the whole service to a patient throughout their illness and to their family and carers during the illness and after it. More effectively researched guidance on home care, day care and social, psychological and spiritual care elements will be essential to develop a rounded service provision nationally.

  Placing palliative care development wholly within the framework of the Cancer Plan is limiting, since increasingly palliative care looks to deal with the consequences of a wider range of illnesses. The focus on cancer may hold back diversification of palliative care, since it can mean that other services do not think that palliative care services can be used with other illnesses, general practitioners and community health and social care professionals do not refer when palliative care could make a difference and people in the community do not benefit from palliative care skills and experience.

  It is still the case that community and health and social care provision is patchy for people approaching the end of life with a diagnosis other than cancer. Such situations may continue for many years, and quality of care is variable. Poor care for people moving towards the end of life will affect many more people as the post-second world war jump in population reaches old age, and is likely to lead to demands for greater policy attention. The skills and experience in palliative care could be transferred to less specialised care and community understanding through programmes of community and non-specialised professional education. For example, St Christopher's Candle Project has worked with the Metropolitan Police to train police family liaison officers to deal more effectively with people whose family members are believed dead or who are suddenly and often violently bereaved. Candle also works to help schools affected by bereavement. Much more needs to be done to strengthen the capacity of individuals and communities through faith groups and churches and many community groups that contribute to the resilience of communities and individuals to respond to death and bereavement.

  Recommendation: planning for all areas of health and social care, not just cancer and diagnosed degenerative diseases, should include provision for care of service users approaching the end of life and bereavement care, drawing on the experience of palliative care.

  Recommendation: community and continuing professional education for many health, social care, education and community professions should include components to strengthen the resilience of communities and individuals in dealing with death and bereavement.



17   Not printed. Back


 
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