University of Kent

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A STUDY OF CANCER SUPPORTIVE CARE INFORMATION NEEDS FOR THE KENT AND MEDWAY CANCER NETWORK

O’Neill D.F. Bungay H. Ojo T. THE CENTRE FOR HEALTH SERVICE STUDIES UNIVERSITY OF KENT 2003

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A STUDY OF CANCER SUPPORTIVE CARE NEEDS FOR THE KENT CANCER NETWORK

Contents: Page

Executive Summaries

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Chapter 1 Introduction Chapter 2 Methodology Chapter 3 Literature Review Chapter 4 Survey of English Cancer Networks’ Supportive Care Strategies Chapter 5 A Study into Perceptions of information support in Kent, through Interviewing a sample of Members of the Kent and Medway Cancer Network References

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List of Tables Page

Table 1

Distribution of responses on Cancer prevention Table 2 Distribution of responses on information about a suspected diagnosis of the cancer in question Table 3 Distribution of responses on information about the cancer in question and its treatment Table 4 Distribution of responses on information about Inpatient stays Table 5 Distribution of responses on information about Supportive and palliative care services Table 6 Distribution of responses on the ways in which the information is made available Table 7 The proportion of respondents who identified a specific information source Table 8 The proportionate distribution of opinion on how well patients were informed about specific issues Table 9 The proportionate distribution of opinion on how well patients and their carers were empowered to make decisions relating to specific issues Table 10 The proportion of respondents who Identified specific types of information sources available to health professionals. Table 11a Characteristics of Empowerment Table 11b Characteristics of Dignity Table 11c Characteristics of a holistic approach to cancer care

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University of Kent

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Executive Summary 1

What does this report address? Information needs in cancer supportive care’. The Kent and Medway Cancer Network is particularly interested in the area of information support, for patients and carers and professionals, relating to: appropriate management of the individual, empowerment of cancer patients in relation to decision making, levels of information on cancer supportive care, availability of and access to that information.

How does this report address information needs? Through 3 different studies conducted on behalf of the network

What does the report provide? It provides a review of recent published literature on information needs in supportive care. It provides summary of types information made available by different cancer networks around England. It provides the views of a sample of professionals concerned with the provision of Cancer Supportive Care in the Kent and Medway Cancer Network.

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Executive Summary 2

How do you use this report? This report may be used in many ways. The scientific literature review provides a current snap shot of accurate information, and evidence on a wide range of issues relating to information needs in cancer supportive care. It may be used to underpin evidence based policy development, or it may be sought as a reference document for definitions, descriptions, methods and models of organisation and care. The review of information available from cancer network sources provides a recent picture of activities and information services, in the field, in other parts of the country. There are examples of innovation as well as numerous useful references from web sites and networks. The study of professionals’ views provides insights from different perspectives of service delivery across the network. While a single view may see no weakness in a structure or organisation, a look from a range of differing perspectives can reveal valuable insights, which planners and decision makers may need to address.

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Executive Summary 3 What are the Major Findings from the Scientific Literature Review? The importance of cancer in England, the outcomes compared with other countries, and particular variations relating to social deprivation and geography in Kent are reviewed. The policy background from the Calman-Hine report (DoH1995 ibid) through to the National Service Framework for supportive care services commissioned by the National Institute for Clinical Excellence (NICE), are considered. The changing nature of palliative care and supportive care and the descriptions and definitions of these important health services are addressed in a special section. An overview of supportive care needs and details relating to physical needs, integrated service needs, psychosocial needs and spiritual needs are presented. Wide coverage of different aspects of informational needs is provided. The information issues relating to appropriate management, particularly with reference to dignity, respect and holistic care are summarised. An overview of the principles and structure of modern service organisation has been presented, and complementary therapy in cancer care is addressed.

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Executive Summary 4

What are the Major Findings from the Review Of Information Made Available By Different Cancer Networks Around England? The 34 Cancer Networks in England were asked if they wished to volunteer copies of policy documents relating to palliative and supportive care, including advice for staff and patients under the headings of: appropriate and holistic care management, and empowerment and decision-making for patients and carers. A short questionnaire was also attached. The information received from responders is presented.

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Executive Summary 5 What are some of the Major Findings from the Study of Perceptions of Professionals Working in Cancer Care? Those working outside the acute setting were less aware of the availability of written information than those in the acute setting. Quality of information relating to the patients admission varies. a need for some improvement is noted. Different members of the cancer network need to be made aware of the literature provided by other professional groups in order to deliver a holistic approach to care. There is evidence that information accessible to ethnic minorities and those with special needs is limited. Some professionals were better able to access up to date information and education than others. The more peripheral care becomes the more variable the standards of information gathering and use become. Also proposed that while provision of information to patients is important, it not likely to empower patients without front line staff being empowered. Performance management is seen as incompatible with empowering patients and their carers. A range of definitions of dignity from the person-centred individual characteristic to the socio-political position with the way that professionals treat the patient arose from the interviews. Opinions of how a person’s dignity may be maintained or impaired were put forward. Three distinct perspectives of a holistic approach to patient care emerged.

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Chapter 1

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Introduction

Introduction:

Cancer Services in Kent and Medway are commissioned to meet the needs of patients, ensuring high quality, integrated care along the patient pathway, according to agreed standards. In meeting the needs of patients, equity of health service provision for cancer for the whole population is essential (Kent Cancer Network 2001). The Kent and Medway Cancer Network is developing a Cancer Information Strategy. In doing so the Network has identified a major area of concern, which they wish to address. This is ‘information needs in cancer supportive care’. The Network is particularly interested in the area of information support, for patients and carers and professionals, relating to: i. the appropriate management of patients, their families and their carers in terms of dignity, respect and general holistic care of the individual; ii. the empowerment of cancer patients in relation to their involvement, or otherwise, in the decision making processes concerning their care and treatment; iii. modalities and levels of information on cancer supportive care, as well as the availability of and access to that information. The objective of this study is to address these currently unmet needs. The way proposed to achieve this objective is to identify, construct and make available the evidence base pertaining to information support, for patients and carers and professionals in the relevant areas.

The objective of this study will be achieved through construction of this evidence base from three sources: i. a review of the scientific literature, ii. a survey of current information support developments in the field of cancer supportive care, in England, iii. a qualitative study of perceptions of information support in Kent through a sample of members of the Kent and Medway Cancer Network

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Methodology

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2.

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Methodology

The following tasks are designed to address the objective of the study:

2.1

A Scientific Literature Review of:

(a) studies which address the appropriate management of patients, their families and their carers in terms of dignity respect and general holistic care of the individual. (b) studies which address the empowerment of cancer patients in relation to their involvement, or otherwise, in the decision making processes concerning their care and treatment. (c) studies which assess modalities and levels of information on cancer supportive care, (d) studies which assess the availability of and access to that information.

2.2 A survey of current Cancer support information (Grey Literature) on: (a) the appropriate management of patients, their families and their carers in terms of dignity respect and general holistic care of the individual. (b) empowerment of cancer patients in relation to their involvement, or otherwise, in the decision making processes concerning their care and treatment.

2.3 A ‘current view’ inventory supportive care information, in Kent.

of

existing

cancer

This would be a ‘snap shot’ through the eyes of key personnel involved in the broader delivery of care to cancer patients. The qualitative evaluation would be conducted through telephone interviews of a sample of members of the Kent Cancer Network. There are obvious difficulties encountered when seeking views across a relatively diffuse network of professionals, whose membership numbers over 600 and who operate in various fields across a district with a population of 1.5 million. To gather a spectrum of views while maintaining coherence of subject matter across the range of differing perspectives is difficult. To do so within the limited resources of a small study requires a degree of compromise. This compromise probably limits the usefulness of the findings to within this particular network. It was, therefore, decided that the survey would be confined to a group health care providers involved with one cancer type. The cancer type chosen was is one of the common cancers occurring in the South East, which is not gender specific and has patterns of illness amenable to health gain, through health and social care interventions. It will not be described further to preserve the anonymity of participants.

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The interviews were semi-structured and designed to address (a) knowledge and perceptions about available cancer supportive care information, (b) the information support available to patients and carers, (c) perceptions of unmet needs for cancer supportive care information, and how this relates to future service development, mindful of the cancer profile for Kent. The review of the scientific literature and grey literature follows

Scientific literature search methodology: A computer-aided literature search was conducted using key words and terms some of which were derived using a Thesaurus and free-text search /mesh browser and include: psychosocial support, palliative care services, supportive care, cancer information needs, cancer complementary therapies and bereavement support. All texts identified by on-line search were obtained except where was clear from the title or abstract that they were unsuitable. Texts selected for review included those published in peerreviewed journals, grey literature, and reported original research conducted using comparative methods. Literature reviews from other countries were included provided they included a methods section, as were unpublished final reports on relevant studies from UK universities funded by the NHS. The databases used were Medline, Embase, CancerLit, CINHAL, British Nursing Index and HMIC. Other websites searched include the Audit Commission, NICE, Cancer Link, Cancer Bacup and a hand search of literature in St. Christopher’s hospice and the King’s Fund library.

Grey literature search methodology: This was conducted by sending a canvassing letter to Cancer Network Leads, requesting samples of all available policy documents, strategies, plans and other grey literature pertaining to: (a) the appropriate management of patients, their families and their carers in terms of dignity respect and general holistic care of the individual. (b) empowerment of cancer patients in relation to their involvement, or otherwise, in the decision making processes concerning their care and treatment. A follow up letter was sent to non-responders after four weeks. Responses were received from 18 networks (56%). The amount of material received varied from individual copies of palliative care / supportive care strategies, directions to network websites, through to comprehensive collations of information sources and service descriptions. The collated responses are set out in chapter 4.

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Chapter 3

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Literature Review

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3.

Literature review

3.1

Cancer: National and International Patterns of Cancer

Cancer is currently the cause of 12% of all deaths world-wide and approximately 20 million people are alive with the disease at present (WHO 2002). In Europe in 1995, there were an estimated 2.6 million new cases of cancer representing over one quarter of the world burden of cancer. The corresponding number of deaths in Europe from cancer was around 1.6 million (Bray et al. 2002). Lung cancer, with an estimated 377,000 cases, was the most common cancer in Europe in 1995, together with cancers of colon and rectum (334,000), and female breast (321,000), the three cancers represented approximately 40% of new cases in Europe. In men, the most common primary sites were lung (22% of all cancer cases), colon and rectum (12%) and prostate (11%), and in females, breast (26%), colon and rectum (14%) and stomach (7%). Lung cancer was the most common cause of death from cancer in men (29%). Breast cancer was the leading cause of death in females (17%). In the U.K., cancer is a main cause of death in the population. Mortality from cancer accounts for approximately one quarter of all deaths. (Department of Health 2000a) There are 200,000 new cases diagnosed annually in England (excluding non-melanomatous skin cancers -NMSC), and 120,00 cancer deaths per annum. One of three people will develop cancer during their lifetime (Department of Health 2002). The commonest types of cancers recorded in the in the South East are breast, prostate, lung and colo-rectal (Thames Cancer Registry 2002). The 5 year survival rates in England & Wales, for each these cancers, is demonstrably lower than for the same cancer in comparable European countries. The five-year relative survival for men for all cancers combined (excluding NMSC and a few very rare cancers) is approximately 31% for England & Wales for patients diagnosed between 1986 and 1990. In women it is approximately 43%. Within a population of 1,000,000 there are approximately 2,800 cancer deaths per year (Higginson). However, overall, mortality rates are falling. Mortality rates for breast cancer have fallen by over 20% over the past decade The falls in the rate of smoking among men since the early 1970s have led to a marked fall in the incidence and death rate from lung cancer. The numbers of people surviving more than five years has improved, about 4% every five years. Much more dramatic improvements have been seen in childhood cancers and testicular tumours. Cervical cancer mortality rates have fallen by 7% a year since the introduction of the national cervical screening programme. (Dept. of Health. 2000b). Studies indicate that cancer is predominantly a disease of the elderly with twothirds of cases reported in 1995 being in people over the age of 65 years. Cancer is a disease which has effects that are manifested not only physically but also psychologically, spiritually, socially and economically. Cancer can arise in an individual as a result of a wide range of interacting, causative

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factors. These include genetic predisposition, lifestyle risk factors, environmental agents and the wider determinants of ill health such as poverty, poor housing, unemployment. The incidence and prevalence of cancer has increased in recent decades (Calman Hine 1996) while at the same time life expectancy including length of survival, while living with disease, has increased. As life expectancy increases the annual number of deaths in the population from any cause will reduce. Hence we have seen that the overall cancer mortality trends in England are falling (Dept. of Health 2001 ibid. Dept. of Health 2000.) See fig. 1

Figure 1 T r e n d s in C a n c e r M o r t a l i t y 1 9 8 9 - 9 9 , A ll P e r s o n s aged under 75

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1997 1998 1999 East Kent

(DASR= Directly age standardised rate. Source: East Kent Coastal PCT)

As has been mentioned exposure to the wider determinants of ill health such as poverty, poor housing, unemployment give a predisposition to cancer. Thus cancer is strongly associated with poor socio-economic status and deprivation because of the associated higher prevalence of other risk factors. While overall cancer mortality rates are falling, the distribution of cancer morbidity and mortality is heavily weighted towards the more deprived ( Jenkins et al. 2001). See Fig 2.

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Lung cancer rates by deprivation 300

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Figure 2. Age Standardised Hospital Episode Rates for Lung Cancer, in deciles, according to population distributed by deprivation (DETR Index) East Kent 1999/2000. (Chart source: East Kent Coastal PCT.)

The causative factors most obviously accessible to preventive action and modification of cancer incidence will therefore include, lifestyle factors such as smoking and diet, poverty and reversal of inequalities, and raising awareness to risk. The impact of cancer is far greater than the number of cases alone would suggest and the initial diagnosis is still perceived by many patients as a lifethreatening event with more than a third of patients experiencing clinical range anxiety and depression. Cancer can profoundly affect the family's daily functioning and economic situation through social isolation, the loss of income and increasing health care expenses. Health care providers in their turn bear a burden of psychosocial effects through caring for people with cancer (WHO 2002). Cancer is often a progressive disease with a wide range of complications and disabling effects. In response cancer treatments can themselves be aggressive and cause unpleasant side effects. While techniques range from surgical excision of tumours, through radiotherapeutic ablation or palliation and chemotherapy, they change significantly with time and innovation but remain frequently debilitating and costly. To many patients the quality of life that is available to them within the context of cancer care, including rehabilitation has become a highly important issue (Watson 1991).

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The NHS Plan (Dept. of Health, 2000a.) introduced the policy background against which the modernisation of the health services and implementation of service specific policies can take place. This provides for the setting of targets and investment in change through the introduction of service developments with which to meet such targets. At the highest level there are national targets such as those for reducing deaths from cancer • Reduction in mortality rates from cancer by 20% in people under 75 by 2010. • Reduction in rates of smoking in adults from 28% to 24% by 2010. From these and others further targets cascade down through various levels. The NHS Cancer plan addresses all such targets through strategies aimed at: • Better prevention • Action on Health Inequalities • Earlier detection • Faster diagnosis and treatment • Consistent high quality services • Improved quality of life through better care There exist a wide range of services within hospitals, primary care teams, hospices and palliative care teams. Recent Government initiatives have been developed to tackle the widespread and sometimes devastating effects of the disease, foremost of these is the NHS Cancer Plan (Department of Health 2000). This establishes cancer networks as a new model of integrated cancer care service provision. Also, palliative care providers have initiated the development of networks for supportive care services of patients alongside the cancer networks to improve the co-ordination of care.

3.2 The profile of Cancer in the Kent and Medway Cancer Network Catchment Mortality from Cancer in Kent In 1999 there were a total of 7435 deaths in East Kent and 9500 deaths in West Kent. Medway Authority had male (112) and female (113) mortality ratios that were significantly above the national average. The mortality rate for men (118) in Thanet is the highest in Kent. Sevenoaks (82), Tunbridge Wells (83), and Canterbury (88) have the lowest male mortality rates in Kent. West Kent’s mortality rate (persons 100) is marginally higher than East Kent’s (persons 99). The distribution of areas of relative deprivation alongside areas of relative wealth in Kent can tend to statistically mask the burden of ill health in the more deprived populations. The male lung cancer rates in both areas and the female mortality rate in Medway are significantly above the national average. In contrast, Sevenoaks, Tunbridge Wells and Maidstone have the lowest overall mortality rates in Kent from lung cancer (SMRs) at 63, 71 and 77 respectively. These rates are significantly below the national average.

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When compared with national figures, patients waiting for treatment in East Kent NHS Trust have similar average waiting time for some cancers but wait longer for lung cancer, most genitourinary cancers and cervical cancer (Jenkins et al. 2001).

Incidence and Prevalence of Cancer in Kent The Kent Cancer Network serves a population of nearly 1.8million and is made up of the Kent County (1.3 million), Medway Authority (300,000), Hastings and Rother (180,000) and around 40,000 of the East Sussex population who receive secondary care treatment hospital in Tunbridge Wells (Kent Cancer Network 2001). In Kent & Medway, there are 366 electoral wards, which are spread across 12 local authorities. Of these 366 wards, 54 wards fall into the 20% most deprived wards in England. 15 of these 54 wards fall into the worst 10% in England (7 of which are located in Thanet). An estimated 244,000 people live in these wards – 15.7% of the population of Kent & Medway. Ashford Local Authority is the best in terms of deprivation and considered to be the most affluent. In the year 1997, there were 3468 newly diagnosed cases of cancer in males and 3791 cases of cancer in females. For the years 1997/1998/1999, the highest registration rate for lung cancer in males was in the Medway Unitary Authority area at 89.6 and the lowest in Sevenoaks Local Authority at 49.1. The highest rate for females was in Thanet Local Authority at 39.4 and the lowest in Tunbridge Wells Local Authority at 19.8. In the same years 1997/1998/1999, registration rates for breast cancer in females were highest in Tonbridge and Malling Local Authority at 130.2 and lowest in Canterbury Local at 108.4. At a PCT level, the highest rate for newly diagnosed cases of cancer in males was in East Kent Coastal PCT at 89.1 and the lowest in South West Kent PCT 52.4. The highest rate for females was in East Kent Coastal PCT at 41.2 and the lowest in South West Kent PCT at 20.3. In terms of prevalence, Ashford, Canterbury and Swale had lower rates compared to East Kent as a whole although Ashford had the highest rates for ovarian cancers. Thanet has higher rates for most cancers which include lung cancer and Shepway had more rates for cancers such as breast and prostate. Large areas in East and North Kent and pockets of West and South Kent have relatively high unemployment and low wages, and deaths from many cancers are higher in these areas of deprivation. In contrast, the West of the County generally has a very buoyant economic base, with a high cost of living. In 1999, a total of 7435 deaths from cancer accounted for 27.1% and 27.5% of all male deaths in East and West Kent respectively, while female cancer deaths accounted for 21% (East Kent) and 24% (West Kent) of total deaths.

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The highest mortality for males occurred in Thanet (118) while the lowest mortality rates were found in Sevenoaks (82), Tunbridge wells (83) and Canterbury (88). The variation across local authorities can be attributed to disparities in socio-economic circumstances of individuals living in those areas Trend data for Kent suggest that although East Kent is on line to meet the national 2010 cancer targets; in West Kent they are unlikely to be met. In particular Swale and Medway local authority areas will remain above target. (The Kent and Medway Cancer Report 2002)

3.3

The Policy Background

The vision for cancer services was laid out in the Calman Hine Report (DoH 1995) and the subsequent ‘Improving Outcomes’ Guidance. The main triggers to the commissioning of this report were: the increasing incidence and prevalence of cancer, and the “apparent variations in recorded outcomes of treatment" within the UK. The five sets of key principles underpinning good care as outlined in ‘A Policy Framework for Commissioning Cancer Services’ are: i. focus on quality of life of the patient; ii. whole-person approach taking into account the patient’s past life experience and current situation; iii. care that encompasses both the patient and those that matter to the patient; iv. respect for patient autonomy and choice v. emphasis on open and sensitive communication that extends to patients, informal carers and professional colleagues. (EL(96)85: A Policy Framework for Commissioning Cancer Services). Whilst the Calman-Hine Report provided the stimulus for change the National Cancer Plan (2000) was intended to implicate the mechanism whereby the Calman-Hine proposals might be put into practise. The Cancer Plan set out the first comprehensive national cancer programme for Englandencompassing prevention, screening, diagnosis, treatment, research and supportive/palliative care. The plan had the following objectives: saving more lives, improving the quality of life, reducing inequalities and building for the future through education, training and research, and expansion of the workforce. The targets introduced in the Cancer Plan include: • reduction in smoking rates among manual groups from 32% in 1998 to 26% by 2010, to narrow the health gap; • encouraging a healthier diets by increasing fruit and vegetable consumption with the introduction of the national "5-a-day" programme. Some of the specific actions to reduce deaths from cancer would incorporate the following primary and secondary preventive measures:

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Ensuring that interventions address national Health Inequalities targets and priorities; Working with identified high risk/hard to reach groups (linking with existing schemes for regeneration, and Healthy Living Centres, as deaths from cancer are higher in these areas); Developing the health promoting education and training role for health professionals/community workers and using the leadership of local cancer clinicians to raise awareness in local communities of action that can be taken to reduce deaths from cancer; Ensuring that cancer patient information materials and public information, for example through web-sites, includes advice about promoting health; Recognition of the importance of access to psychological support and helping patients to help themselves through advice on access to other supportive services.

The National Cancer Plan was supported by significant additional resources. A proportion of this extra £570 million funding was intended for hospice and palliative care services. The Cancer Plan recognised the variation of hospice and palliative care services in England. It found that only 1/3 of health authorities have developed strategies for specialist palliative care provision and that services are uneven. Some regions have twice as many specialist palliative care beds, whether in a voluntary hospice or in a specialist NHS unit as others, and the same is true for home care nurses. Within the plan it was acknowledged that the major contribution (about £170 million per annum) to clinical palliative care services to date has come from the voluntary sector, and that for too long the NHS has regarded specialist palliative care as an optional extra. The Plan proposed that by 2004 the NHS will invest an extra £50 million to end inequalities in access to specialist palliative care so that NHS investment matches that of the voluntary sector. However it was also stated that palliative care services must work to agreed national standards if they are to be funded on a 50% basis rather than 33%. The Cancer Plan also confirmed the importance of cancer networks, created as a result of Calman. Across England the 34 networks provide the operational model for cancer services for a defined population of 1-2 million people, bringing together health service commissioners and providers, the voluntary and private sector and local authorities. The cancer networks are responsible for the commissioning and delivery of all cancer services within one geographical area. Most Cancer Networks are in the process of developing supportive care strategies and early in 2003 a National Service Framework for Supportive care Services commissioned by the National Institute for Clinical Excellence (NICE)will be published. The Draft of the Guidance on Supportive Care provides a comprehensive review of evidence supporting the improved provision of supportive care in terms of the appropriate management of patients, their families and their carers and empowerment of cancer patients. The specific topic areas for this evidence based guidance are: information giving, psychological support, palliative care, social support, rehabilitation, spiritual support, complementary

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therapies, user involvement, self help and support, symptom control, end-oflife and bereavement care. The National Council for Hospice and Specialist Palliative Care Services in 2000 proposed that, “Palliative Care and Supportive Care Networks would be ‘virtual service organisations’ that would bring together service providers and commissioners from the NHS and voluntary sectors into a unified collaborative system for planning, implementing, monitoring and evaluating palliative and supportive care services for their populations.” In addition the Department of Health (2000) described a supportive care network as an "effective consortium of providers of information, psychological support, complementary therapies, social care and palliative care working with commissioners within a Cancer Network and will encompass NHS, social services, voluntary sector and user groups.” Since 2001 there has been a group working to develop the Kent Specialist Palliative Care Strategy. This is concerned with the future provision of specialist palliative care. It forms part of the emerging strategy for supportive care for patients with cancer in Kent. Also, links have been established with educational institutions to develop training programmes for the Network. It was proposed that a Kent Supportive and Palliative care network should be developed to work alongside the Kent Cancer Network in order to provide a framework to establish protocols and develop a network-wide strategy for Palliative Care provision.

3.4

Defining Supportive and Palliative Care

3.4.1.

Palliative Care

Various definitions of palliative care exist. The National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) definition is based on that of the World Health Organisation (WHO) which defines palliative care as, “the active total (holistic) care of patients whose disease is not responsive to curative treatment. Control of pain, other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families,” Palliative care aims to: • affirm life, and regard dying as a natural process • provide relief from pain and other symptoms • integrate psychological and spiritual aspects of care • offer a support system to help patients to live as actively as possible until death • offer a support system to help the family cope during the patient's illness and in their own environment (WHO 1990).

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A similar definition was proffered by the Standing Medical Advisory Committee and Standing Nursing and Midwifery Advisory Committee in 1992. Palliative care was defined as, “the active total care offered to a patient with a progressive illness and their family when it is recognised that the illness is no longer curable, in order to concentrate on the quality of life and the alleviation of distressing symptoms within the framework of a co-ordinated service. It neither hastens nor postpones death; it provides a relief from pain and other distressing symptoms and integrates the psychological and spiritual aspects of care. In addition it offers a support system to help the patient’s illness and in bereavement,” (Standing Medical Advisory Committee and Standing Nursing and Midwifery Advisory Committee 1992). Thus palliative care should maintain the optimum quality of life for the individual: to sustain his or her independence and dignity for as long as possible and support patients and their families, staff and other carers before and during bereavement, (Hoare 1993). There are generic and specialist palliative care services. General palliative care is an integral part of every health and social care professional's role (NICE 2002). Whereas specialist palliative care is the active total care of patients with progressive, far advanced disease and limited prognosis, and their families, by a multi-professional team who have undergone recognised specialist palliative care training. It provides physical, psychological, social and spiritual support, and will involve practitioners with a broad mix of skills, including medical and nursing, social work, pastoral/spiritual care, physiotherapy, occupational therapy, pharmacy and related specialities (Palliative Care 2000). 3.4.2.

Supportive Care:

Several attempts have been made at defining supportive care, and at present there is an on-going debate about the terms 'palliative' and 'supportive' and their relationship. The National Council for Hospice and Specialist Palliative Care Services (2002) considering the relationship between supportive and palliative care suggested that as far as supportive care and general palliative care were concerned that the principles underpinning good practice were broadly the same and it would be acceptable to substitute the term 'supportive care' for 'generic palliative care', specialist palliative care as defined above would then be termed 'palliative care'. The working definition of the National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) of Supportive Care, describes a concept of care which is

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“designed to help the patient and their family to cope with cancer and treatment of it - from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment" (NCHSPCS 2002). NICE suggests that as supportive care is provided to people with cancer and their carers throughout the patient pathway, 'it should not only be given equal priority with other aspects of care, but should also be fully integrated with diagnosis and treatment (NICE 2002). Supportive care encompasses: • Self-help and support • User involvement • Information giving • Psychological support • Symptom control • Social support • Rehabilitation • Complementary Therapies • Spiritual support • Palliative care • End-of-life bereavement care. ‘Supportive Care’ as defined by Fitch (1995) and Ganz (1990) is, “ the provision of the necessary services as defined by those living with or affected by cancer to meet their physical, social, emotional, nutritional, informational, psychological, spiritual and practical needs throughout the spectrum of the cancer experience” (Fitch 1995, Ganz 1990). Such needs are applicable to all cancer patients. They may occur at any stage of the illness and revolve around issues of survivorship, recurrence, palliative care and bereavement (Supportive Care Working Group Report, 2002). Meeting these needs will vary from one person to another as different people have different methods of learning and coping and also differing perceptions of the condition. Where needs remain unmet, appropriate management of the patient may be compromised as the patient may not be able to comply with chemotherapy and utilisation of other health care services. This has great implications in the holistic care of the person affected with cancer. Supportive care is thus: - "an 'umbrella' term for all the services, generalist and specialist, that may be required to support people with cancer and their carers; - not a distinct specialty but is the responsibility of all health and social care professionals, who deliver care that is informed…." (NICE 2002). An awareness of supportive care needs is important for planning effective supportive care interventions for patients and their families as well as carers. Cancer Supportive care is provided whether or nor the patient's disease responds to curative treatment.

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3.5 Aspects of Supportive Care and Supportive Care Needs 3.5.1

Overview

Studies on supportive care needs reveal that individuals with cancer and their family members experience different needs across the spectrum of the disease, including the diagnostic, treatment, follow up-phases which change over time and are influenced by factors such as age, gender, socio-economic status (SES), culture, education, religion, coping resources, and social support. Whether a person can meet his or her own needs, can be influen.ced by illness. The Canadian Strategy for Cancer Control: Supportive Care/Cancer Rehabilitation Workgroup (SCWG) (2002), provided an overview of the needs of cancer patients and developed from the literature the following categories of need: physical, practical, emotional, psychological, social, spiritual and informational. In the UK the National Council for Hospice and Specialist Palliative Care Services (2002) derived the following domains of care from a patient survey undertaken by Cancerlink: •

Information needs Patients should receive all the information they want concerning their condition and possible treatment and care options. The information should be up to date, honest, timely and sensitive.

•

Intergrated support services Patients need support for their carer and family, advice on financial and employment matters and provision of transport

•

Being treated as a human being Patients should be treated with dignity and respect as an individual whole person (not just as a disease or as a numbered patient)

•

Empowerment Patients need to have their voice heard, directly or through advocacy, and to be valued for the knowledge and skills that they can bring to their individual situations. They need to be able to exercise real choice about their care and treatment and where it takes place.

•

Physical needs Patients need to have their physical symptoms managed to a degree that is acceptable to them and achievable within current knowledge.

•

Continuity of care Patients need well informed health and social care professionals, who work in the community. They also need good communication between professional working within and across the NHS and voluntary sector service providers.

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Psychological needs Emotional support for the patient and those caring for them and giving them time to listen and understand concerns

•

Social needs Patients need support for their carers and family, advice on financial and employment matters and provision of transport.

•

Spiritual needs Support for patients to be able to explore the spiritual issues that are important to them.

These domains are very similar to those developed by the SCWG (2002) together this provides evidence of their relevance to supportive care. In the following sections these needs will be explored in greater detail, particularly those areas identified in or linked to the aims and objectives of the study: empowerment, information, being treated as a human being (holistic care of the individual, and dignity). 3.5.2

Physical Needs

Physical needs are needs for physical comfort and freedom from pain, optimum nutrition, and also the ability to carry out the usual day-to day functions. A reduction in patients’ pain and discomfort is a key outcome in palliative care (Neale et al, 1993). Physical symptoms in the terminal phase of disease are associated with increased distress, as well as major depression and anxiety (Vachon et al 1995). Vachon et al. (ibid) also reported that severe pain, which is inadequately controlled and poorly tolerated, has been associated with suicide in cancer patients. Difficulty in coping with the patients symptoms can also be a source of distress to carers, (Jones et al. 1993). The psychological effects of cachexia and anorexia can be severe for the patient, their families and carers. Dietary advice and counselling, about optimum nutrition, is an important part of the care of cancer patients, (Urie 2000). Malnutrition complicated by the cancer cachexia syndrome, is reported as being the most common secondary diagnosis in cancer patients, with multifactorial aetiology, (Shike, 1996). Body (1999) reported a positive relationship between nutritional deterioration and quality of life, with frequency and severity of weight loss in patients ranging from 31-87% during treatment. Patients need to have their physical symptoms managed to a degree that is acceptable to them and achievable within current knowledge. 3.5.3

Integrated Support Services

Practical needs for integrated support services, refer to needs for direct assistance, in order to accomplish a task or activity (usually daily living activities), thereby reducing the demands on the person e.g. financial assistance, daily home help and transportation. Jones et al. (1993), reported that from the perspective of carers looking after terminally ill patients one of

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the most difficult issues was the lack of information available about financial benefits and sources of help outside the NHS. There was also a delay in obtaining domestic help in the home. According to several authors cancer care has improved in recent years however there still exists a need to give carers more advice about help available outside health services. Jones et al. (1993), assessed carers’ experiences of caring for people who had died at home from cancer in Exeter, Torbay, and Plymouth health districts and found that over 50% of the carers were not given advice on financial help and information on support available from local charities. The investigators also found that most carers experienced physical symptoms during the terminal illness and were often reluctant to mention these to the doctors and that practical nursing support was lacking for those involved in daily care (Jones et al 1993). It is exceptionally difficult for families looking after a relative who has high levels of need to cope without respite. It is even more difficult if that patient has been having regular respite care at the hospice for a long period of time (Kirk 1999). Respite care is the temporary care that permits caregivers to relinquish their duties, stress and responsibilities for a time-limited period in order to maintain their physical and emotional strength’ (Miller 1986). It allows the carer to feel that they are entitled to breaks away from the person they are looking after. This is seen as a social responsibility by the health authority and not part of specialist palliative care provision. 3.5.4

Psychosocial needs

According to the literature, psychosocial needs encompasses the patient’s, and their family's, mental, social, cultural, spiritual and developmental needs. Psychological needs relate to the ability to cope with the illness experience and its consequences. They include the need for optimal personal control and the need to experience positive self-esteem. Practical issues, which are likely to require psychological adjustment, might include such things as changes in lifestyle, sexual problems, diminished cognitive ability, and so on. Emotional needs to be addressed include the need for a sense of comfort, belonging, understanding and reassurance, at times of stress and incomprehension. Social needs include family relationships, role change, difficulty dealing with the responses of family members/children, social relationships, interpersonal communication, telling other people about the illness and arriving at acceptance by family, friends colleagues and community. The National Council for Hospice and Specialist Palliative Care Services defines psychosocial care as ‘ including psychological approaches concerned with enabling the patient and those close to them to express thoughts, feelings and concerns relating to the illness’. According to Ward (1985), the management by nurses of terminal cancer patients and their families has changed since 1969, with an increased emphasis on the education and support of family carers. “When discussing psychological care it is important

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to remember that it is the quality of the relationship between patients and their professional carers that promotes the disclosure of information”, (Lloyd-Williams et al. 1999).

Family members often cite friends and co-workers as sources of support but in cases where the cancer patient was married, Petrie et al. (2001), found that healthcare professionals were rarely regarded as sources of support by the spouse. Feelings experienced by family members include fear, sadness, guilt, distress, anger, grief, abandonment and feelings of powerlessness. Distress is a normal response to cancer and levels may be high. Over a third of longterm cancer survivors were found to suffer maladjustment to diagnosis and treatment, remaining symptomatic six years later (Grassi .1996). Informal carers may experience many of the same concerns and fears as patients. It is a stressful period for all involved. Hence a necessity to identify where available, or develop where unavailable, appropriate needs assessment tools and supportive interventions for each category of persons involved. This is seen as beneficial in creating more effective intervention strategies especially where the clinician is involved (Northouse et al., 1995). The needs of the informal carers require to be known, understood and met. Needs assessment for family members should include resources for psychosocial support. Ongoing support is seen as playing an important role in maintaining higher levels of adjustment. Petrie et al. (2001) found that healthy family members were affected by the illness of another family member, therefore causing physical, emotional, or social symptoms. These discomforts which presented as disability or sense of personal crisis interfered with the individual’s capacity to act, thus the usual ways of meeting one'’ needs were compromised. “Family and friends are often intimately involved in patient care, sometimes at the expense of their own health” (Urie et al, 2000). In a study, relatives were identified as the principal carers for over 80% of those needing care at home and 6% of patients relied on friends and neighbours (Addington-Hall and McCarthy, 1995). In a cross sectional survey of newly diagnosed cancer patients, Whelan et al. (1997) found that the most commonly reported symptoms related to fatigue, pain and psychological distress whilst other frequently reported issues related to the need for information and social concerns regarding the patients ability to take care of their home and maintain family and other relationships (Whelan et al. 1997, Sanson-Fisher et al. 1998). These may arise from a wide range of factors, which include: the emotional responses to their diagnosis, their social and role limitations, the loss of their physical and mental abilities, the complexities of their treatment the impact of cancer on family and friends, (Frost et al 1997).

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Spiritual Needs

Spiritual need: Is any factor that is necessary (requisite, indispensable) to support the spiritual strengths of a person or to diminish the spiritual deficits. Spiritual needs are much less tangible than physical needs because they are often abstract, complex and more difficult to measure (Watson 1997). Several authors have reported the role of religion in helping patients and carers cope. Hospice spiritual care is seen as being promoted through the practice of presence, compassion, hopefulness, and the affirmation of life as fruitful (O’Connor, 1986). Nagai-Jacobsen and Burkhadt in 1989, identified three goals of caring spirituality: fostering personal integrity; promoting interpersonal connection; supporting personal search for meaning. Variances however existed in that in some cases religion became more important as the illness progressed or that those involved were older and therefore tended to be more religious. Spiritual needs are thus related to the meaning and purpose in life.

3.6

Informational Needs

3.6.1

Overview

The Department of Health has referred to NHS Direct as a source of immediate advice for people worried that they might have cancer, and the Expert Patients programme as helping to ensure that people with the disease are best able to manage it, giving the best hope of a good outcome (DoH 1999). The Cancer Information Strategy (NHS Executive 2000) built on existing policy initiatives (The New NHS 1997, The Calman-Hine Report 1995, Improving Outcomes Guidance, Information for Health 1998). Its aims are to: • Ensure that accurate, comprehensible information about cancer is accessible to all those who need it. • Enhance the quality of care given to patients with actual or suspected cancer, by ensuring that their needs for information are met in a timely sensitive and appropriate way, and by ensuring good communication exists between various health sectors. • Underpin the Governments' commitment to modernise cancer care in this country and to monitor progress towards the achievement of specific targets to reduce the death rate from cancer. The first two aims are concerned with delivery of information to the patients and to health care professionals, the third aim is concerned with the receipt of information about individual patients to audit progress. The Cancer Information Strategy deals with cancer from two different perspectives: a. the information needs of the users – the public, patients with suspected cancer and their carers, patients with proven cancer and their carers, health professionals, health service managers and planners, and researchers;

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b. the division and structuring of information according to subject – generic information about cancer, information about cancer services, information about individual cancer patients and information about groups and populations of cancer patients. Patients cannot make informed decisions unless they are given sufficient and appropriate information, including details about their condition and the likely outcomes with and without treatment (Coulter et al 1999). Most patients with cancer want as much information as possible to their personal needs and circumstances (Jones et al 1999). Indeed in Meredith et al’s study of 250 patients attending an oncology centre in Scotland 96% of the patients specifically wanted to know if their illness was cancer, almost all patients wanted to know the chance of cure and the side effects of treatment. The use of questionnaires in estimating the level of information required by patients post-diagnosis demonstrated that nearly 80% of patients want as much information as possible whilst 20% wished to have only positive information or wanted to let the doctor make decisions on their behalf without informed input (Meredith et al., 1996 and Thomas et al., 1998). Information needs exist because of the necessity to reduce confusion, anxiety and fear, to inform a patient’s or carer’s decision-making and to assist in skill acquisition (SCWG 2002). Yet providing patients with information opens the way for truly informed consent, increased patient understanding and satisfaction, and increased compliance with treatment (Ley 1990). The quality of pain treatment in cancer patients with chronic pain has shown to be enhanced by educating patients and improving their participation in their treatment (de Wit et al 2001). Furthermore experts agree that being able to influence care decisions through active participation is highly relevant to cancer patients who experience a loss of personal control due to the uncertainties relating to disease progression (Bottorff et al 1998). Coulter et al (1999) summarised the patients need for information as being to be able to: • Understand what is wrong • Gain a realistic idea of prognosis • Make the most of consultations • Understand the processes and likely outcomes of possible tests and treatments • Assist in self-care • Learn about available services and sources of help • Provide reassurance and help to cope • Help others to understand • Legitimise seeking help and their concerns • Learn how to prevent further illness • Identify further information and self-help groups • Identify the 'best' healthcare provider.

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Evidence shows however that many cancer patients experience difficulties in obtaining sufficient and relevant information hence they cannot make informed decisions or express informed preferences. It has been found that high levels of patients and relatives dissatisfaction with the level of information provided by GPs after a diagnosis of cancer had been established exist. This has been attributed to GPs’ ignorance about the aspects of care and availability of specialist services (Audit Commission, 1993, Mosconi et al., 1991, National Cancer Alliance, 1996). Also, such dissatisfied patients were much more likely to be depressed and were marginally more likely to be anxious or to want as much information as possible (Jones et al 1999). Many patients and carers report that they receive insufficient information from health and social care professionals and that much of the information received is inadequate and of variable quality (NICE 2002). Coulter et al (1999) suggested that possible reasons for this included: - Health professionals underestimating patients’ desire for and ability to cope with information - Limited consultation times - Lack of knowledge of treatment options and effects by the health professional. Health care professionals should be able to assess the patient's desire for information by allowing the patient to express his or her feelings about the illness (Watson 1991). 3.6.2

Families and carers needs for information

The patients' families and carers also have information needs. Families often feel inadequately prepared to cope and feel they also have informational and skills needs (Hinds, 1985). Other studies have found that the need for more information about the disease is very important to the caregivers to help them to cope (Willis-Hileman and Lackey, 1990; Hinds, 1985). Family members especially spouses need information about the cancer and its treatment which is separate and different from that of the patient and will seek information to help them cope. As information needs change over time, provision of high quality information to the patient and carers (informal and formal) should be an ongoing process. The level of information required after diagnosis is usually high and may be sought via meetings with the physician or using computer software. Other forms of information needs include those on care and communication issues, condition changes, probable outcomes of surgery, specific treatments and side effects, support groups and assurance that the best possible treatment is being provided (Kilpatrick, Kristjanson, Tataryn, and Fraser, 1998). Where information has been collected from both general practitioners and their patients/ patients’ relatives (Blyth 1990, Kurti and O’Dowd 1995, Reilly and Patten 1981, Seale and Cartwright 1994) communication and symptom control emerged as areas of concern for clients. Communication includes the passing of information amongst patient, families, nurses and physicians (Ferrell and Schneider, 1988). In her study, Linda Nugent (1998) highlighted the role of effective communication as being paramount in the successful care

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of the patient and their family. Good communication between patients and health professionals is also central to empowering patients 3.6.3

Equal access to information

The National Cancer Plan (2000) recognised that people from minority ethnic groups have particular needs and suggested that the provision of culturally sensitive information and the adoption of different approaches to giving information could improve the accessibility of screening services to these groups. The publication 'Towards a Cancer Information Strategy' (DoH 2000) also expressed concern that people from ethnic minority groups experience consultations without proper translation facilities, with the result that family members including children act as interpreters. It further states that such practises are unacceptable and that members of ethnic minority groups have the right to adequate information which includes the services of suitably skilled interpreters or advocates and to information in their preferred language. The production of information directed at ethnic minority groups needs to take account of the importance of cultural and religions issues. For example, health promotion literature cannot be simply translated from one language to another, but requires sensitivity to different cultural attitudes to health issues, interpretation of images and signs. There are also communication difficulties for many people with hearing, sight or combined sensory disabilities (Towards a Cancer Information Strategy 2000). The existing written and multimedia materials are often unsuitable for people with sight or hearing disabilities, learning difficulties or low literacy levels. It is estimated that one in eight adults in the UK have reading and writing difficulties (Dixon 1992). Therefore information given to patients and relatives should cover a wide range of topics in the broadest way possible and be presented in a readable, but not condescending way. The Cancer Plan also identified that women with learning difficulties often do not have the information and support they need to decide whether or not to attend for breast and cervical screening or to understand the need for breast awareness. The Department of Health has established a working group, including women with learning difficulties, to draw up good practice guidance and materials for women and their families and health care professionals. The NHS Screening Office produces information about breast and cervical screening for women from: ethnic minorities, with learning disabilities, and women with hearing impairments. These include information sheets written about screening in six languages, symptom awareness in 10 languages, audio tapes in four languages, videos specifically targeted at Caribbean and African women, Asian women (in five languages), Chinese and Vietnamese (3 languages). There are videos using British sign language available for women with hearing impairment about screening and information about post diagnosis procedures, and leaflets for women with learning disabilities about breast and cervical screening. The written information and audio tapes are provided free of charge and some of the written information can be downloaded from the Cancer Screening Programme Website (www.cancerscreening.nhs.uk). There

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is a charge for the videos, ranging from £10-35, but in practise these would be purchased by breast screening centres who would then lend the videos to local communities. 3.6.4

Methods of informing patients and their families

Much work has been done on the effectiveness of various media used to inform patients, families and health professionals of ways of managing cancer. Gysels and Higginson's review of studies evaluating methods of information provision to cancer patients and their families showed that: a. written materials in the form of leaflets or booklets were the mainstay of supplementary patient education (Ley 1990, Lilley 1991); b. availability of a cancer information helpline was a good resource for patients, the people close to them and for the general public. Best evidence from the review indicated that the information provision should be targeted to the individual (Gysels and Higginson 2002). As already stated providing patients with adequate information can help them to cope with their illness and retain a sense of control. However the fear of cancer can prevent patients and their families from absorbing and retaining the information that is given to them verbally. Dixon (1992) found evidence that some patients had a selective memory, and may rationalise what they are told to suit themselves. They may also revert to previously held views once they are away from the medical setting. An advantage of providing written information is that it is available to consider, review, absorb and share as they are ready and at their convenience. In addition health care professionals should also then be aware what information the patient has been given. Dougherty and Stuttaford (1993) found that relatives also considered it useful to have information written down particularly if they had not been present when the information was shared, or if the patient was too anxious to remember all that was said. An important premise in family system theory is that families are capable of taking in information, changing, and growing throughout the course of a patient’s illness (Lewandowski and Jones, 1988). Informal carers have identified the value of repeating information and they look for reassurances and reiteration of advice given previously. Retention of information is improved by providing information in several different formats (Sykes et al. 1992). In the research carried out by Jones et al. (1993), only 15.5% of carers were satisfied with the information provided about sources of support, the main problems cited were lack of early domestic support, lack of financial advice, lack of information about resources outside the health service and lack of practical support within the United Kingdom. Hence other mechanisms such as for listening to, recording and responding to patients and carers needs, views and priorities should be in place (Gysels and Higginson 2002). Nurses can also act as educators, support people, community resource liaisons, and advocates. They need to make comprehensive assessments of each family’s communication patterns, support, knowledge of the disease process, stress, and the effectiveness of coping behaviours (Northouse et al., 1991).

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A solution to addressing information needs for cancer patients may be to ensure that patients have access to written or audiovisual material, to inform themselves and to use in discussion with health professionals. Such materials must start with needs defined by the patients, give treatment information from evidence-based sources. For example The Lynda Jackson Macmillan Centre for Cancer Support and Information at Mount Vernon Hospital, offers support to address the information needs of cancer patients. The Workshop on Guidelines in 1993, revealed that information on relevant support services e.g. CancerLink, Breast Cancer and Mastectomy Association, cancer support groups is seen as being important in helping to prepare the patient/relative for diagnostic consultation. Patients and carers present felt that being unprepared for the diagnosis caused a feeling of being unable to absorb what was being said (Scottish Partnership for Palliative Cancer Care). Suggestions for good practice included: being given written communication or recorded information to take away; being encouraged to ask questions; being encouraged to have a relative or friend present and a contact person to telephone with any later questions. The St. Christopher’s Hospice Information Service is another useful source of information on local services or contacts. A directory of hospice and palliative services in the UK and republic of Ireland and information on hospices and services abroad and the National Council for Hospices and Specialist Palliative Care Services is published by the Hospice Information Service and is freely available. In addition, pamphlets and advice can be obtained from the BACUP (British Association of Cancer United Patients) and other sources include videocassettes, written leaflets and the internet (e.g. NHS Direct Online and Cancernet). Cancerlink’s national network of cancer service users links with existing regionally based cancer self-help and support groups and provides cancer users with information, support and training. 3.6.5

Examples of Good Practice

Examples of good practice as identified by Ferguson et al. (1998) taking place within the Northern and Yorkshire region are -: The provision of understandable, well-communicated and adequate information to meet patient needs at each stage of illness The development of information packages by cancer centres and units in form of leaflets, video or audiotapes and increasing patients awareness of national publications such as BACUP booklets.

3.7

Empowerment of Cancer Patients

There are a wide range of views on what patient empowerment means (Elliott 1996). Gibson (1991) defined empowerment as "a process of helping people to assert control over factors which affect their lives". Rodwell (1996)

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described empowerment as a process whereby groups or individuals are enabled to change a situation through being given the necessary skills, resources, and authority to do so. The individual has the power and freedom to make choices and accept responsibility for those choices. To 'empower' is to give authority to, or to enable, and enablement is about changing the nature and distribution of power. Mason et al. (1991), suggested that empowerment in addition to enabling people to recognise their strengths and abilities and personal power, also includes power-sharing and respect for self and others. Patient empowerment involves the transfer of power from the professional to the patient (Elliott 1996). However according to Labonte (1989), health professionals and services cannot empower people. People only empower themselves through self-awareness and through the resources which are provided within the process. From a policy perspective, documents such as 'Shifting the Balance of Power' released by the Department of Health, reflect the Government's dedication to empowering patients through giving greater authority and decision making power to patients, underpinning this with changes in organisational roles and relationships (Department of Health 2002). Furthermore, 'The NHS Plan' states that “good communication between health professionals and patients is essential for the provision of high quality care and is central to empowering patients to be involved in decision making” (DoH 2000). The value of patient participation as a way of enhancing decision-making has been widely recognised (World Health Organisation 1978, Council of Europe 1982, Audit Commission 1993). To allow a decision to be made, individuals require information on which to base their decision. The NHSME (1993) stated that the giving of information is the most important factor in empowering patients as communication/information empowers people and can reduce health disparities. A comprehensive review of the literature on patient empowerment shows that the literature has built up around hospice and palliative care and contains the general consensus that patients should be fully involved in their care and fully informed throughout the care process (Denise 1987, Martyn 1989, Saunders 1990). From the above it can be determined that there are two essential ways in which cancer patients can be empowered: through the provision of information and to be involved or participate in decision making. The UKCC (United Kingdom Central Council for Nursing, Midwifery and Health Visiting) in their recent document, Guidelines for Professional Practice (UKCC 1996) devotes a section to advocacy and autonomy whereby nurses are required to respect the patients autonomy and choices concerning their own lives. Patients’ need to have their voices heard directly or through advocacy and to be valued for their ability to contribute to the decision-making process (e.g. offering of the choice of care at home or in other settings) during their illness (O’Neill, Rodway 1998). Shared decision making is vital especially where there are several treatment options which may have different effects on

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the patient’s quality of life, and their involvement may increase the effectiveness of the treatment (Coulter et al. 1999). A number of studies indicate that although patients with breast cancer for example, preferred to leave the actual decision making to their doctor, they still wanted the opportunity to discuss treatment options and to be a part of the decision making process. Such patients were shown to suffer less depression and anxiety when treated by physicians who adopt a participative consultation style (Fallowfield et al. 1994). The degree of patient participation in the consultation will depend on a number of factors: including the patients ability to access appropriate information, and the professionals willingness so to involve the patient in the decision making process. Thus Rodwell (1996) sees the relinquishment of professional power as a key element of empowerment.

3.8 The Appropriate Management Of Cancer Patients, their Families and Carers, in Terms Of Dignity, Respect and General Holistic Care of the Individual. 3.8.1

Management

The term 'holistic' was derived from the Greek word 'Holos' meaning whole or complete. Holism has been defined as "concerned with the interrelationship of body, mind and spirit in an everchanging environment". ‘Holism’ as a term was coined by Gen. J. C. Smuts (1870-1950) to designate the tendency in nature to produce wholes (i.e. bodies or organisms) from the ordered grouping of unit structures. Therefore ‘holistic medicine’ is said to be, a form of medical treatment that attempts to deal with the whole person and not merely with his or her physical condition (Oxford English Dictionary 2002). The appropriate holistic management of cancer patients would therefore be geared towards more family-centred care provided by a supportive care or hospice and palliative care program (Hilden et al. 2001). 'Dying with dignity' and the 'preservation of dignity' are commonly used terms in palliative care and yet dignity is an elusive concept. Szawarski (1986) cited in de Raeve (1996), considers that there are three basic meanings of dignity: • 'a certain quality which pertains to each and every person without exception' so being a person and having dignity are in essence the same thing. It has do to with self respect • • It has to do with social and political roles. For Higginson (2001) dignity is 'an essential human state and many individuals wish to die as they have lived, thus achieving good control of symptoms and alleviating fears, anxieties and psychological problems are important steps towards achieving dignity’. The dead are unable to express the indignity they suffered, and it therefore essential that those caring for the dying consider the dignity of the dying patient (Turner et al 1996).

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For the living, dignity is the ability to feel important and valuable in relation to others, communicate this feeling to others, and to be treated as such by others. A further important component of dignity is the possession of one's own dignity which affects the ability to maintain or promote the dignity of another (Haddock 1996). Higginson (2001), suggests that the dignity of those with advanced disease can be maintained through personal possessions and clothing, regular visitors, privacy when required and personal care of appearance for example hairdressing. Patients self esteem and thus dignity can also be maintained through the provision of new dimensions and opportunities to participate in activities such as painting and craft work. On the other hand dignity is eroded when people are treated as objects, as children, without human rights or as individuals, and are not given choices, privacy or independence (Haddock 1996). The 2002 NHS patients cancer survey reported that 86% of patients had complete confidence in all of the doctors responsible for their care. 79% of patients said that they were always treated with dignity and respect. 83% of patients reported having completely understood the explanation of their diagnosis. 89% of patients reported having being involved in decision making as much as they felt necessary. 3.8.2

Inequalities in Access

The Cancer Plan (2000) reported that there is evidence that black and ethnic minorities and socially deprived groups have reduced access to palliative care services. Patients from these groups are unlikely to take up services, which are culturally unsuitable or delivered in an insensitive way. Shipman, Levenson, Gillam 2002 found evidence that black people make little use of hospices as they are seen to be associated with death by hastening the dying process. The Cancer Black Care, an organisation based in East London, aims to address the cultural and emotional needs of black and minority ethnic communities affected by cancer, as well as their carers, families and friends. Supportive care is offered through counselling, which could be on a ‘face to face’ basis, or by telephone, or through a monthly support group. Help with practical issues such as obtaining benefits and other social needs and an information service are proposed.

3.9 Organisational Arrangements of Supportive Care Services Organisational arrangements for supportive and palliative care services have changed significantly in recent years and continue to evolve. No two areas are at exactly the same stage of evolution or have identical structural models. Most areas are, however, developing services according to certain organisational principles. It is expected that the NICE guidance will provide further clarification, but previous publications such as the Draft Supportive Care Guidance (2000 ibid.) and the Canadian Strategy for Cancer Control SCWG (2002 ibid.) have already provided some of the basis for these principles.

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Patient-focused Care

The patient is considered to be an equal partner and has a right to autonomy and choices. He/she is informed of the diagnosis, treatment and potential outcomes, encouraged to take responsibility and also make choices for his/her own health and quality of life. The indicators are: identification of the patient, information provided to patients, patient’s empowerment, individualised approach and patient satisfaction. 3.9.2

Early Intervention

This provides and opportunity to educate the patient, family and carer on the Supportive Care process and to secure their involvement and alleviates anxiety. This is indicated by the time post-diagnosis at which supportive care services started. A component of the Supportive Care strategy is the provision of support from when cancer is first suspected through to death and into bereavement via Palliative Care. The referral guidelines for suspected cancer developed by the Department of Health are an aid to early intervention as they aim to facilitate appropriate referral between primary and secondary care for patients whom a GP suspects may have cancer (Department of Health). 3.9.3

Interdisciplinary team

Based on the varying supportive care needs of the patient and family and indicated by the organisational structure of the team. The ‘Improving Outcomes Guidance’ places stresses that services are best improved by teams of clinicians and other specialists working together. 3.9.4

Co-ordinated care

According to the Supportive Care Guidance draft proposal the supportive care link worker is that appropriately qualified/experienced person acting as the patient and carer’s principal contact point and are available at any and all stages of the patient’s journey through the supportive care services (Department of Health, 2000). Evidence supporting this proposal were derived from the National Cancer Alliance data (patient demand), and the NHS Ombudsman reports. Perceived benefits include increased patient satisfaction, decreased anxiety, better understanding of treatment and disease, fewer missed appointments, improved access for disadvantaged groups and timely and appropriate referral to support agencies. Access to the link-worker service is facilitated through communication to all patients, carers including NHS staff. 3.9.5

Continuity of care and recognition

This indicates patients’ need for good communication between professional working within and across the NHS and voluntary sector service. Patients’ should be able expect to be treated as human beings, with dignity and respect in all their contacts with care services.

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Accessibility of care

A key recommendation of the Calman/Hine report is that “all patients should have access to uniformly high quality of care”. Good home deaths require access to a range of hospice, palliative care and primary care services, committed and confident GPs and good co-ordination and access to education for health and social care professionals (National Council for Hospice and Specialist Palliative Care Services 2000) 3.9.7

Professional, Volunteer and Patient training

As the knowledge base and effective organisation of supportive services continues to evolve, the updating and acknowledgement of skills and knowledge, in professionals, volunteers and patients themselves is a key factor in the provision of quality care. 3.9.8

Evidence-based research, evaluation and quality improvement

Barriers to Evidence Based Clinical Practice exist.Their resolution is an issue of importance in care provision ,(Haynes 1998, Stewart 1999, Bostrom 1993, Pearcy 1995, Luker 1992, McKibbon 1994, Deykin 1996). The approach set out in the NHS Cancer Plan to ensure the delivery of high quality services involves – setting out evidence-based guidance for the configuration of services and effectiveness of treatments, implementation and monitoring of the guidance. The development of evidence-based guidance by NICE is a key element of the Supportive Care strategy and the key themes include the concept of supportive and palliative care networks, information and communication, partnership/joint commissioning, access to specialist palliative care and users and carers. Key facets for development include – •

•

•

Information Technology (IT). The use of IT in this context would involve the use of a single data source by care professionals, management, patients and carers, researchers and service commissioners. Details of care to be expected by the patient and what is being provided would also be included in this data source. Quality Audit. Hatcliffe and Dawe’s (1995) findings from the implementation of the ‘A vision for the Future’ (DoH/NHSME, 1992) targets at the St.Christopher’s Hospice, London demonstrated that evaluation of palliative care services through audit and quality assurance could encourage interdisciplinary collaboration and identify the need for further research which could contribute to the creation of clinical guidelines. Specialised Outcome Assessment. The palliative care assessment tool (Ellershaw et al., 1995) has been found to be an appropriate means of assessing the effectiveness of treatments for all physical symptoms thereby showing that the service had a positive impact and value in the relief of pain and other symptoms (Hatcliffe and Dawe, 1995)

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3.10

Components of Cancer Supportive Care Services:

3.10.1

Overview

Cancer supportive services consist of : Tertiary Health Care Centres: These provide clinical services, education and training of professionals, public and policy education, research and program evaluation. Also include rehabilitation centres. Secondary Cancer Care Centres: These carry out some of the functions of tertiary health care centres. Primary Health Care Centres: These are community-based services focused on prevention and home care. Community Supportive Care Services: These consist of support groups and psycho-social and spiritual counsellors. They work closely with or may be integrate into tertiary, secondary, primary care and rehabilitation centres. These services deliver support, provided by community-based health and social service teams, to the cancer patient, from diagnosis to cure or to death and beyond into bereavement. Specialist services in the community are provided by Macmillan Nurses, Marie Curie Palliative Care Nurses and hospice home care nurses. The referral role: A recent survey of day centres in North Thames revealed that patient referral to day care was done by GPs, community nurses and hospital teams for specific ongoing therapies and medical interventions, for social and psychological support, for personal care and to provide respite to carers (Hearne and Higginson 2000). 3.10.2

Tertiary and Secondary Cancer Care

Specialist palliative care units can include independent hospices, Marie Curie hospice centres, and NHS palliative care units, working in patnership. An example is the Marie Curie Cancer Care and Royal Liverpool University NHS Trust. The ‘Liverpool Care Pathway for the Dying Patient’. It was developed by health care professionals from hospital, community and hospice services. It came about as a response to reports of relatives/carers receiving poor support outside hospice units, recurring incidents of lack of symptom control, and the perception that there inadequate attention to dignity in many services. Most Marie Curie Hospice Centres and NHS palliative care units provide in-patient care, day hospice, home care and 24 hour advice service together with bereavement support. In Britain the hospice movement arose out of a perceived inadequacy in the care of dying patients. The ‘hospice’ was developed as a modern approach to palliative care with the aim of giving people with a terminal illness (cancer) an option to traditional medicine. Hospices championed a holistic model, designed to meet the physical, social and psychological needs of dying people and those close to them (Seale 1989). It is a concept of care which has been established to improve the quality of life of the terminally ill mainly those living with cancer with a focus on helping patients communicate effectively and sharing life agendas, (Curtis and Fernsler, 1989). The

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developments were strongly supported by research evidence, based on reports of bereaved relatives or occasionally from patients. Such reports frequently indicated that hospital and home care failed to meet the patients’ needs for pain and symptom control, psychosocial and spiritual care, as well as communication and information needs and care for the family. Many hospices are purpose built to encourage patient and family privacy (Higginson 2001). Hospices have captured the publics' imagination in ways which has led to pressure for further expansion. Hospices came out of the voluntary sector in response to un met needs. Without the voluntary sector input, it is unlikely that the statutory authorities would have provided a similar service (Clarke and Neale 1994). The 1994-5 survey of hospice and specialist services in the UK entailed an enquiry of inpatient, home care and day care services undertaken by the Hospice Information Service. Out of 30 401 admissions 74% were from home and just under a quarter from hospital. The commonest reason for admission, (almost half), was symptom control, followed by respite and terminal care and finally rehabilitation (Eve et al. 1997). 3.10.3

Primary and Community Cancer Care

The Calman-Hine report stressed that cancer care should be provided as close to the patient’s home as possible, and that the primary care team is a central and continuing element in cancer care. Therefore primary care is central to the provision of supportive and palliative care. With 'Shifting the Balance of Power' Primary Care Trusts have become the front line NHS organisation, working through partnerships with local communities, Local Authorities, NHS Trusts, the voluntary and private sector, the other local agencies and Strategic Health Authorities and government. They also have responsibility for the management, development and integration of all primary care services including medical, dental, community, pharmaceutical and optical. By 2004 PCTs will have responsibility for at least 75% of the NHS budget (Department of Health 2002). Primary Care Trusts are thus in the best position to develop provision for the needs of patients with terminal cancer within their localities through their responsibilities for both commissioning and and direct service provision (Shipman, Levenson and Gillam 2002). Over 90% of patients with cancer spend most of their last year of life at home and over 90% of those patients are admitted overnight to hospital at least once during this time (Addington-Hall and McCarthy, 1995). Although the majority of cancer deaths occur in hospital, most terminally ill patients and their lay carers would prefer death to occur at home (Barclay et al. 1999). If care is to be patient focused, enabling choice and empowerment, patients should have a say about where they die (Fox 1999). Research evidence however indicates that not all patients are able to die in the place of their choice. Factors determining the place of death are complex, and in areas where hospice availability have increased this has been associated with a decrease in home deaths and DGH deaths (Johnson and Oliver 1991). Koffman et al (1996) suggested that the reasons why people are unable to

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remain at home to die include: the lack of a supportive carer in the home, poor availability of 24 hour nursing and home care support services, areas of high social deprivation, uncontrolled symptoms and changes in patient and family preferences as death approaches. The proportion of patients with cancer dying at home has fallen steadily in the UK from 37% in 1965 to 27% in 1987, and 22% in the 1990s (Gaze 2000). In order to determine the preference of terminally ill patients with cancer for their place of final care, Townsend et al. (1990) conducted a prospective study of randomly selected patients with cancer from the hospital and the community whose life expectancy was less than a year. Of 98 patients approached, 84 (86%) agreed to be interviewed, of whom 70 (83%) died during the study and 59 (84%) stated a preferred place of final care: 34 (58%) wished to die at home given existing circumstances, 12 (20%) in the hospital, 12 (20%) in a hospice and one (2%) elsewhere. Their own home was the preferred place of care for 17 (94%) of the patients who died there, whereas of the 32 patients who died in the hospital 22 (69%) stated a preference to die elsewhere. Had circumstances been more favourable 67% of patients would have preferred to die at home, 16% in hospital and 15% in hospice. It was concluded that with a limited increase in community care 50% more patients with cancer could be supported to die at home, as they and their carers would prefer. The investigators also acknowledge that place of death and quality of final care are important components of terminal cancer care for both the patient and the family. However Gaze (2000) found that it can be difficult for community staff when patient and their families have different agendas. Patients may want to die at home regardless of whether symptoms are controlled or not. But if things become too difficult for the family to manage, they may need the patient to be hospitalised. The NCHSPCS (2000) National Plan and Strategic Framework for Palliative Care draft recognised the importance of patient choice at the end of life as a factor in improving access to services. According to the draft, evidence reviewed showed that patients wished to be cared for and to die in their own homes and achieving this required regular access to a range of hospice, palliative care and primary care services, committed and confident GPs, good co-ordination and access to education for health and social care professionals (National Council for Hospice and Specialist Palliative Care Services 2000). Dying at home is also preferred by most of the general public and primary care professionals but most importantly, a good death is important for cancer patients and families if it can be achieved with dignity, within place of choice and with symptoms well managed. On the other hand, in situations where the patient is frightened, insecure, or lacks confidence in their support network or where the informal carer is physically or mentally tired, patient choice may not be possible as urgent admission to hospital or hospice is likely to be sought, even when death is imminent (O’Neill, Rodway 1998). Grande et al (1996), investigated how terminally ill patients under home care, viewed the care and support provided by their doctors and nurses. The three main providers of community support within their study were GPs, district nurses and Macmillan nurses. They found that there were predominantly

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positive views of the support received which was mainly psychosocial of which communication, kindness and consideration were mostly valued. The qualitative analysis of patients’ statements also indicated that emotional support and information were provided predominantly by Macmillan nurses. The same study showed that at least 70% of terminally ill cancer patients receiving home care will have some contact with a GP, at least 56% will have contact with a district nurse and 37% with a Macmillan nurse in the last year of life. According to Higginson, “ studies in of the effectiveness of care at home have tended to demonstrate weaknesses where conventional care is provided alone, and support the use of inpatient hospices and mobile support teams especially those operating in the community. Cost-effectiveness studies suggest that these services are not more expensive than conventional care and in some instances may be cheaper”. In Sunderland, a pilot service called the Out-of-Hours Palliative Care District Nursing Service was initiated where the aim was for skilled practitioners to support and care for patients who wanted to die at home, regardless of the complexity of their illness or the timing of crises. The services’ value was demonstrated through both qualitative and quantitative data analysis and during the pilot period, 37 of the 80 patients referred to the service died, 31 of those (87%) at home. Without the service many of the patients might have been admitted to hospital against their wishes. However, not all supportive and palliative care initiatives have been successful. In an audit of home-based palliative care of patients dying from cancer in the Grampian region of Scotland, a range of difficulties which had affected the delivery of supportive care were found. Communication difficulties were present in 93.7% of cases, only 66.3% of patients were fully informed of diagnosis and 55.4% about the prognosis. Also, 26% of cases were late referrals to district nurses who were involved in 76.6% of cases and Macmillan nurses were involved in few cases (28%). Social work, physiotherapy, occupational therapy and self-help groups were found to be under-utilised. This suggests that services need better co-ordination, integration and accurate needs assessment of patient and carer needs. 3.10.4

Community Support Terms

The principles of community care are firmly established within health and welfare policy, and encompasses the overlap between social care, health and nursing services. Clarke and Neale (1994) raised the concern that the drive to build more hospices is contrary to the principles of community care, and they described local models of palliative care in the community. They concluded that community care has a number of dimensions and provides the necessary diversification of hospice care into a variety of settings. It allows for a flexible delivery of holistic care, which can be tailored to individual circumstances. This fits more appropriately with a patient-centred and needs led approach to provision. Further more, the approach lends itself to a breakdown of the traditional emphasis on terminal care, in favour of continuous care, throughout

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the progression of a disease. Finally community led projects are of relatively low cost, with the emphasis on service developments, rather than on fundraising for new buildings. Community palliative care teams provide support for patients dying at home there are more than 300 such teams across the UK (Shipman et al 2002). Specialist care, provided by specialist terminal cancer teams, has an approach to home care which is largely advisory and supportive, rather than being devoted to practical nursing tasks (Ward 1985, Yardley 1986). Views of patients and their families, living within inner London and North Kent, about supportive care, reveal that support teams receive the most praise being rated by 89% of patients, and 91% of family members, as good or excellent. The care provided by the teams was found to be more valued than that provided by other health professionals. This can be attributed to the aims of such support teams which are similar to those of the hospice movement: to control symptoms, to give support and advice, to co-ordinate care, to meet practical and financial needs, and to provide education and bereavement support when necessary (Higginson et al. 1990). Cartwright suggested a lack of supportive community services as having a major role in making people reluctant to care for their dying relatives at home. 3.10.5

Day Care Centres

Day care is a component of palliative care service provision that is valuable for patients who are not ill enough for admission to a hospital palliative care unit but who need more than community / carer support. Not only can day care provide the opportunity to monitor symptom control it can also provide opportunities for rehabilitation and respite care (Dicks 1990). Douglas et al. (2000) conducted a multi-centre study which revealed that informal carers of patients attending palliative day care centres, in the Thames region, felt supported. The particularly derived psychological benefit from their belief that their relative’s quality of life was improved by attending day care. They felt more able to look after the patient at home for longer periods of time as a result. They felt that they benefited particularly when they had an opportunity to talk about their own needs with day care staff and other carers. The study also revealed that palliative day care centres combined their therapeutic and social support, and aimed to ensure that the package of care included assessment, and creative and therapeutic interventions. The study found that 90% of the centres were headed by a nurse, three out of four had access to medical support and all dealt with psychological and emotional issues as well as symptom control (Douglas et al. 2000). Day care, therefore, allows patients to live at home while attending a specialist palliative care on a regular basis (Grande et al. 1998). Positive outcomes in coping response, quality of life and compliance, and the patient’s psychological state have been reported by the following authors: Fawzy 1999, Greer 1993, Moorey 1994, Worden 1984, Richardson 1990, Bucher 1999.

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Multidisciplinary Teams

Supportive care is provided to the patient and family by oncologists, nurses, radiation therapists, pharmacists in the course of diagnosis and treatment. It is also provided by professionals working in private practice in the community or within a private or charitable institution e.g. social workers, psychologists, family physicians, palliative care physicians, dieticians, clergy/chaplains, specialty nurses, physiotherapists, occupational therapists, speech pathologists and volunteers. Supportive Care service providers can hence fall under the following: a. psychosocial care: psychology, social work, psychiatry. This can be further described using the four level model of psychological support which depicts effective information giving, communication and general psychological care as being on the first level; crisis management on the second level, counselling on the third and formal and specialist psychological and/or psychiatric intervention on the fourth (Department of Health, 2000). b. physical care: nutrition, home care programs and services; c. rehabilitation: occupational therapy, physiotherapy, speech therapy, dentistry; and d. supportive care: spiritual counsellors, community support groups Macmillan nurses provide or co-ordinate specialised nursing at home for people with terminal cancer. Such specialist nurses work closely with the primary health care team in an advisory liaison and supportive role, but do not provide a hands-on nursing service. They provide information and advice to the GP or district nurse on physical symptom control and emotional and psychological support to patients and their carers. An example is the Countess Mountbatten House Community Palliative Care Service, which provides integrated services under the auspices of the Southampton University NHS Trust Home Care and Carers service. Patients and carers are given practical and emotional support so that the patient can remain at home. Specialist services are delivered in conjunction with the Primary Health Care team. District nurses are frequent providers of supportive care to patients and carers. Most patients dying at home have some contact with a member of the district nursing team. Millar et al (1998) found that nurses were involved in 76% of all cases, but in 26% of cases the district nurse was only involved at a late stage of terminal illness. Austin et al (2000) found in their study that district nurses viewed early referral of patients to the district nursing service as essential because it facilitated contact with the family and ensured that the nurse could make an assessment of the patients and family's needs and make suggestions as to the kind of support they might wish to receive. There are difficulties in placing the burden of supportive care onto the District nursing service without appropriate organisation and infrastructure. In the nurses’ work, the most common source of stress has been found to be relationships with professional colleagues, especially GPs. Yardley (1986) studied 45 specialist teams and reported that a fifth of the nurses did not get

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emotional support in their work and over half wanted more contact with other nurses in similar services (Yardley 1986). Nurses cited other sources of stress as arising from emotional involvement with families where a person is dying thus the expression of need for more time to spend with such persons and their families (Clive 1992). Palliative care is a relatively small part of a GPs workload. They are responsible for providing symptom control and for onward referral to other services, including specialist palliative care, social services and those provided by the voluntary sector (Shipman et al 2002). From General Practitioners’ accounts of their care for dying people, Field (1998) found that common themes were that the care of dying people was important, rewarding and satisfying; that the GPs saw themselves as: a. part of a team of formal carers and frequently as team co-ordinators; b. having good working the relationships with district nurses who were the main continuing point of contact and symptom management and often recommended treatment changes which the GPs simply validated; c. having less satisfactory relationships with hospitals and social workers. The position of GPs as the normal first point of entry to and liaison with other, more specialist, services has become more important with the increased emphasis upon community care and primary care in the NHS of the 1990s (Field 1998). Studies in the past carried out by Still and Todd (1986), Todd and Still (1993) paid particular attention to communication about terminal prognoses reflecting the practices of GPs. They found that only few GPs in their sample reported that they had tried to disclose such prognoses and that some made strenuous efforts to avoid disclosure. The practice however seems to be decreasing. More recent research suggests that disclosure has become more commonly accepted as preferred practice (Field 1996; Hinton 1994, Seale and Cartwright 1994). Lloyd-Williams et al’s study to determine the input of psychologists and psychiatrists within hospices in the U.K. revealed that there was a shortage of both professional groups. Also there was lack of patient referral even when the services were available whereas social work, counselling and chaplaincy support was available in many hospices. Ferguson et al. (1998) reported the collaborative approach adopted in the Northern and Yorkshire region in the implementation of the national cancer policy. Recommendations for translating policy into practice include: a. Continuing care and follow-up - recognition of the importance of specialist intervention, the development of nurse led clinics; b. Cancer support and associated services - cancer centres and units would provide holistic cancer care which would include provision of nurse specialists, counsellors and therapists, social workers and benefits officers; harnessing of skills and resources available within the charitable/voluntary sector; c. Pathways for referral and prompt diagnosis - recognition of the importance of health education and promotion, presence of adequate diagnostic

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resources, specialist skills and resources for the management of children and adolescents, and the mechanisms for engaging these; d. Acknowledgement of the special needs of cancer patients and their families within minority and disadvantaged groups through consideration of potential language barriers by creating a directory of identified interpreters and awareness of religious and cultural practices important to the care of patients in hospital and at the end of life. Examples of Good Practice. In August 1991, a questionnaire was sent to all district general managers in Yorkshire Health to establish what progress had been made in implementing the proposals. All 16 health authorities had developed, or were developing strategies; some of the developments in the DHAs are described as examples of good practice. a. Grimsby Health Authority: A specialist palliative care team had already been developed and included Macmillan nurses, a breast care nurse, a stoma care nurse, an infectious disease (AIDS) nurse and a Marie Curie nurse all of whom were responsible to one specialist palliative care service to people with all life-threatening diseases. b. Leeds Health: A community care joint planning team, including representatives from Leeds City Council, health services and voluntary agencies, were addressing palliative care and three sub-groups were formed to consider the current service provision, information and dissemination, and service planning. A fourth group was being established to consider aspects of palliative care in multidisciplinary education. c. Scunthorpe Health Authority: A palliative care working group had been developed, by the district general manager. d. Hospices and specialist palliative care services: There were 13 hospices for adults within the Yorkshire region many of which saw themselves as specialist units offering symptom control and respite care. According to the report, the number of people dying in the hospices was falling because of the comprehensive services developed between hospital, hospices and community.

3.11

Use of Complementary Medicine in Cancer Care

Ernst and Cassielth (1998) attempted to determine the prevalence of complementary therapies usage amongst cancer patients through a systematic literature review of 26 studies from 13 countries. They suggested that the average prevalence among adults was 31% and that this use reflected an adjunctive approach rather than a rejection of orthodox medicine. A recent population study in the UK (Rees et al 2000) found that over a third of women diagnosed with breast cancer in the South Thames NHS region had visited a complementary medicine practitioner since their diagnosis. Surveys of attenders at cancer centres (Coss et al. 1998, Downer et al. 1994, Crocetti et al. 1988) suggest that only small numbers of cancer patients were using complementary medicine and they tended to be younger, of higher socio-economic groups and more frequently used complementary medicine prior to their cancer diagnosis. Reasons for using complementary medicine

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arose from dissatisfaction with orthodox treatment caused by lack of curative effect or experience of distressing side-effects rather than as an alternative to conventional treatment. Cassileth et al. (1996) in their study of comparisons between cancer patients who did an did not use complementary medicine also found that patients using complementary medicine were more likely to believe their cancer was preventable though diets, stress reduction and environmental change. The provision of complementary medicine in U.K. cancer services appears fragmented and uncoordinated and there are few published studies of the uptake or provision of these services in NHS cancer services. A few unpublished studies are available, for example, Wilkes (1992) reported that approximately 70% of UK hospices were offering massage and aromatherapy services. Lee and Whitehead (1998) in their study of 190 hospices found that 91% provided some form of complementary therapy. Whilst, Wood (1994) in their published study found that of the 66 cancer centres audited within the UK only 63% had a recognised structure of patient support which included complementary medicine and the range of therapies was limited, with half the centres offering one or two types of therapy the most popular being aromatherapy and relaxation followed by reflexology. The role of complementary therapies in cancer care have been reviewed in the Supportive Care Strategy. Before the introduction of the Supportive Care strategy, complementary therapies were not high profile in the NHS. Recent studies show that more people in the U.K. are seeking to help themselves through the use of complementary therapies, especially in hospitals and the private sector (Mayo 2002). Perceived benefits relate to fulfilment of empowerment, psychological and emotional needs as patients indicate that they have significant quality time to spend with the therapist in an atmosphere where they are free to communicate openly about their situation (Mayo 2002). Ott and Lynch (2002), investigated the benefits of combining conventional and complementary therapy care interventions and concluded that it could improve the quality of life for patients. In their study, quality of life was defined in terms of physical, emotional, social and spiritual where conventional care was concerned whilst from the complementary care perspective it was defined as harmony of body, mind, and spirit.

3.12

What the Literature Review Told Us?

Cancer is an important subject in health care. It is the cause of one in every four deaths, in the UK. One out of every three people can expect to develop cancer in their lifetime. While overall mortality rates are decreasing, the survival rates from cancer are less favourable in the UK than other parts of Europe. The overall burden of cancer is higher in the more deprived sections of the population. In Kent, because of the population distribution, different P.C.T.s can have markedly differing cancer burdens. The NHS Plan provides for the introduction of service developments, which are set up in the context of achieving specific targets. Target setting, while contributing to the national picture, should be designed to address local cancer needs.

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On the policy side, the Calman-Hine report (DoH1995 ibid) set the scene for the future of cancer services. It specified the need to focus on quality of life of the patient, to take a whole-person approach, to provide services appropriate to patients and those close to them, to respect autonomy and choice, to provide broad open and sensitive communication to all. Through the Cancer Plan these aspirations are being turned into a comprehensive and targeted national cancer programme for England. The Cancer Plan recognised the variation of hospice and palliative care services in England, and proposed a means to address it. The Cancer Plan also confirmed the importance of cancer networks, most of which are in the process of developing supportive care strategies. A National Service Framework for Supportive care Services commissioned by the National Institute for Clinical Excellence (NICE) is due to be published around the time of this report. As the evidence base, on the needs and desires of patients and carers, has enlarged, policy development reflects these advances. In consequence the dynamics of palliative care and supportive care have been changing. At the same time, the definitions of palliative care and supportive care have changed. These definitions have been addressed in detail in section 3.4.1. Similarly, the actual supportive care needs of patients and carers are becoming more clearly described, in this evolving world of care. An overview of supportive care needs and specific details relating to physical needs, the need for integrated services, the psychosocial needs and the spiritual needs of patients and carers have been addressed. Informational needs are complex. This is area is perhaps historically less developed, but is currently on the cusp of substantial change. A range of aspects have been addressed. Informational needs is part of the broader issue of appropriate management, particularly with reference to dignity, respect and holistic care. There is an important literature on this issue which is summarised at 3.8. Because of the dynamic change occurring in this field, a lot is being written about the way that new services are emerging. An overview of the principles and structure of modern service organisation has been presented. In addition a separate section addressed Complementary Medicine because of the relative newness of evidence emerging on the prevalence of its use in cancer care.

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Chapter 4

Survey of English Cancer Networks’ Supportive Care Strategies

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4. Survey of English Cancer Networks’ Supportive Care Strategies. (Grey literature review). 4.1

Introduction

The objective of this study is to address unmet needs in the area of information support, for patients and carers and professionals, relating to appropriate management, empowerment and availability of and access to information on cancer supportive care. In addition to reviewing the scientific literature the study was also charged to look at information, currently available, for patients, carers and professionals, and to look at the strategies, of cancer networks, which underpin this information provision. This is the ‘grey literature review’. Contact details for each of the 34 Cancer Networks were obtained from the Cancer Action Team Website, and a letter was sent to the Lead Manager of each network. The networks were asked if they wished to volunteer copies of policy documents relating to palliative and supportive care, including advice for staff and patients under the headings of: appropriate and holistic care management, and empowerment and decision-making for patients and carers. A short questionnaire was also attached to the letter, which asked the following questions: What Supportive Care Services are available for cancer patients within your Network (NHS or Voluntary Sector). What information is available for health care professionals about these services (Please attach copies) What information is available for patients about the supportive care services (please attach copies) Where would patients and their families be able to access this information. Networks were given two weeks to respond to this letter, and then follow up phone calls were made. Although the contact details were only four months old a number of managers were no longer in post, several of the networks had moved offices and or changes telephone numbers. Information below is from written responses, websites and telephone conversations with Network Leads. Responses were received from 56 % of addressees. This probably reflected both the dynamic nature of cancer policy development and the fact that changes relating to ‘Shifting the Balance of Power’ were in progress, at the time. The responses varied from a few lines to very detailed expositions of the work of a network, or direct reference to websites.

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Lancashire and South Cumbria

They replied that the Network was a relatively new organisation, and that they are only just beginning to explore the palliative and supportive care needs across their geographical area. Therefore did not have any information to share at present.

4.3

Mid Trent

Did not wish to take part.

4.4

Trent

Website: Provides information about the Cancer networks in the Trent region in the form of a map of each network, the management arrangements, and professional standards for cancer care.

4.5

Sussex

Website has two areas: public and professional. The site provides information relevant to the provision of cancer services but not clinical information about cancer. However it does provide links to sites which do offer clinical information. The Sussex site provides details of a patient forum, and a cancer information group, which is concerned with data collection and audit. The website gives some information about the Palliative Care Group its achievements, current work and future plans. (From Telephone): Use CancerBACUP leaflets for clinical information. No real policy documents about supportive care available at the time of the survey, but they will be looking at it when the NICE Guidance is published.

4.6

North East London

(From telephone communication) Each hospital has its own directory of local services. Joining the CancerSupportUK website with other London Networks, this has information about cancer services and support. Network has a strategy group for patient information.

4.7

North London

Website: This provides details of the Cancer Network structure and the Service Delivery Plan for 2002-2004. While there is no mention of a current supportive care strategy, as a separate entity, there is a palliative care strategy. Also there is work in progress on a draft supportive care strategy [personal communication]. There is a patient information strategy and Macmillan fund a post specifically for this. There is a local patient forum and PALS which act as a source of information and feedback on information needs. The network is joining CancerSupportUK and will have a directory of local services on that website.

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West London

This site is linked with the CancerSupportUK website, and also has a published directory of local cancer services produced in conjunction with CancerSupportUK. Their palliative care service delivery plan is currently being developed. It includes a needs assessment and summary of current service provision.

4.9

South East London

A copy of the draft of the Palliative Care Strategy was provided in response to the survey. They are currently looking at information and have got Macmillan funding for an information manager post, also 'stock-taking' what they have got in terms of patient information.

4.10

Central Couth Coast

Via email: There are Supportive and Palliative Care Networks that consists of specialist palliative care, inpatient, day care, home care and hospice, rehabilitation services. Patient information is available through general information points. In particular there is a Macmillan information centre in Portsmouth. A similar centre is planned in Southampton. There are written guidelines for the production of information leaflets. Network wide guidelines and patient information folders are available and patient information pathways are currently being developed. A Network patient information group exists and they are currently developing a patient information strategy. There are also two projects looking at patient information for black and ethnic minorities. There is a wide range of support groups. A directory of support groups is being developed. There is a local charity which offers patient information and a counselling service. A website for patients and professionals is due to be available in 2003.

4.11

Dorset Cancer Network

Has a website that is on the NHS intranet. A large amount of information was provided which is detailed below. An example of a newsletter from CancerCare Dorset was also received along with examples of information provided for patients and health professionals, from one of the Hospices. Supportive care Services Mixture of NHS and Voluntary Sector Services. 3 Acute Trusts in Network: 1.

1 WTE palliative care nurse 1 (0.6 WTE)Complimentary Therapist 10 bedded specialist palliative care beds in hospice

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Linked to hospice are 2 community palliative care nurses Yoga sessions for cancer patients Lymphoedema services Patient Information and Resource Centre attached to the hospital Dream catchers support group for children Child counsellors/bereavement service 2.

Macmillan Unit with inpatient beds 2 WTE Hospital Palliative Care Services (liaison) psychological support nurse based on oncology/haematology unit hospital chaplincy Unit based social worker

3.

Palliative care services (liaison) Lymphoedema services.

Primary Care Trust. 4 Community palliative care nurses 5 oncology nurse specialists Specialists have access to community palliative care beds and support services. 3 Hospices 1. Inpatient hospice counselling services bereavement support 2.

Day hospital complimentary therapies links with community teams

3. Day care centre (offers advice and support for patients and carers leaflets sent) lymphoedema clinic breathlessness clinic Also throughout network there are site specific nurse specialists Voluntary Sector Organisation CancerCare Dorset Direct referrals from patients and professionals Complimentary therapies Community nurses (14 nurses including 3 at an acute trust) Aromatherapy at home, patients, carers and bereaved Bereavement support. 2 bereavement counsellors bereavement social group-volunteers general volunteer service some child bereavement service with counsellors

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Website Information about services for health professionals Information available on Network website Held in the resource centre Specialists have information on services Specialist nurse directory Information available for patients about supportive care services Information available via professional web site Each service has patient information Partnership Panel looking at producing a directory of support groups and complimentary therapy services Many areas have posters advertising services Many support services run by patients/carers Where patients and families can access this information Most information is provided on the patient's first visit/appointment Within CancerCare Dorset's patient pack Hospital held records Charity shops Libraries Health Information Website.

4.12

Humber and Yorkshire Coast Cancer network

The information sent included a draft of a Network Adult Palliative Care Strategy, a copy of the Network Palliative Care Needs Assessment (unconfirmed), and a copy of Continuing Care Directory. The network does not have its own website at present but information is available on other websites, and its own website is in development. Organisations involved in providing care: 1 cancer centre 4 cancer units 5 community facilities (bedded) 7 Hospices (4 within network, 3 outside network). 7 Primary Care Organisations Social Services Departments Nursing Homes Residential Homes Other Residential organisations NHS Trusts Voluntary Organisations Prisons

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The Adult Palliative Care Strategy was drawn up in response to the tasks set within the Government Manual of Cancer Standards (Dec 2000). Within the draft there is no specific reference to Supportive Care however general palliative care services and specialist palliative care services are distinguished. The stated aims of the Humber and Yorkshire Coast Strategy are: To improve the quality or remaining life for patients To sustain quality of life for carers through the patient's illness and into bereavement. To reduce psychological morbidity in cancer associated with their experience of the patient's illness and death. To maintain a healthy workforce by providing appropriate support for staff. In addition to the draft strategy a palliative care needs assessment or gap analysis has been undertaken to enable a service delivery plan to be developed. The gap analysis consists of a needs assessment to identify what palliative care services are required to meet the projected needs of network population followed by a comparison with current services. Information for Patients A Guide to Continuing Care Services produced by the Cancer Services Project. The aim of the guide is provide information about appropriate sources of help and information for patients and their families and carers, and to act as reference for those working in health and social care. It includes information about the services offered and contact details for: cancer charities, Bereavement services, Service for children, Hospitals, clinical nurse specialists, support groups, palliative care beds, chaplaincy, Hospices, Department of Social Security, Customer Service Centres, Community Health Councils, Age Concern Centres, Advocacy Organisations, Care Organisations, Citizens Advice Bureau, Information available on the Website There are web pages for each of the following which include contact details and services offered: Clinical Nurse Specialists for each tumour site; Community Macmillan Teams; Hospital Based Macmillan Palliative Care Nurse Specialists; Palliative Day Care; Inpatient support- Community Hospitals; Hospice Support; Radiotherapy Information and Support Team There are also pages providing information about different types of cancer: Frequently asked questions about cancer; How do I ask for information These pages were compiled form resources provided by Cancer Bacup and the ICRF and a Patient User Group.

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West Anglia

Website for patients and professionals the professionals. In the professional section Network news is posted and there is a password protected area. The information provided for patients on the website is about local cancer services and there is a contact list of other useful websites. There is also details about a patient/user forum which is open to patients and carers who have received treatment with the past two years, and a patient information group which includes patient reader panels. Information provided to patients is currently being revised with participation of members of the patient/user forum.

4.14

Three Counties

The website provided information about specific cancers, and details of useful links. The 3 Counties Cancer Services Collaborative Newsletter is also posted on the website. This is also circulated to GPs, consultants, nurses and other interested parties.

4.15

Derby and Burton

(Via Telephone) Very new network, developing supportive and palliative care network, has Cancer information Centre.

4.16

Yorkshire

Website: Network Details, cancer information, cancer standards, cancer collaborative, guidelines for the production and use of written information. Service Delivery Plan 2001/2002 which includes the Palliative Care Strategy which is being updated, anticipated that NICE Guidance will inform strategy update.

4.17

Northern

Website: Information about individual cancers tests and treatment, Complimentary therapies, getting help and support. Two cancer information centres 5 more planned, the information centres provide a library of leaflets, books, and videos, practical advice about finance benefits etc. information about local and national support groups, trained team available to talk to.

4.18

Black Country

Three palliative care nurses in the acute trust and 5 in the community. Site specific clinical nurse specialists for each tumour site treated in the trust. Local Hospice. The White House Cancer Support provides drop in and support groups for all types of cancer, as well as complimentary therapies and bereavement support.

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For health care professionals there is a resource file provided to each care delivery location in the acute sector and primary care, it contains information on each type of cancer as well as services available, and contact telephone numbers. Each GP is provided with a directory of cancer and palliative care services in the area. A network Directory is planned for a later date. All patients are provided with an information pack on cancer treatment at diagnosis, and a cancer information centre is proposed. Palliative care strategy attached and copies of information available for patients about support services.

4.19

Avon and Somerset and Wiltshire

Website: Includes Annual Report 2001, Palliative Care Strategy for Adults 2001, A list of all the services and contact details for all the cancer services, and support organisations. Information about the local Cancer Forum, professional standards, site specific information about cancers for patients.

4.20 Conclusions This small survey demonstrates the widely varying positions of different cancer networks with regard to the development of information and information strategies for palliative and supportive care. Over half of the 34 Cancer Networks approached in England, volunteered copies of policy documents, relating to palliative and supportive care. The included such things as advice for staff and patients, appropriate and holistic care, management, empowerment and decision-making for patients and carers. They also responded to a short questionnaire. The authors appreciate the effort made by the representatives of these groups.

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Chapter 5

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A Study Into Perceptions Of Information Support In Kent Through A Sample Of Members Of The Kent And Medway Cancer Network

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5. A Study Into Perceptions Of Information Support In Kent, Through Inteviewing A Sample Of Members Of The Kent And Medway Cancer Network 5.1

Overview

A survey of views of ten professional carers from different professions and specialties providing care in the Kent and Medway Cancer Network was conducted. To address the scope of perspectives a broad range of professionals was chosen. While all having a heavy commitment to cancer care, the subjects were expected to have diverse and differing perspectives. They were not chosen to represent any particular profession’s view. Their views are on services within their network. They do not provide a picture which can be generalised to services in any areas outside of Kent and Medway. To limit the size of the survey the cohort of professionals chosen was selected from professionals who worked within a single cancer category. While having differing perspectives they were associated with each other through a common disease category within cancer. The cancer type chosen was is one of the common cancers occurring in the South East, which is not gender specific and has patterns of illness amenable to health gain, through health and social care interventions. It will not be described further in order to help preserve the anonymity of participants. The subjects comprised the following: A Specialist surgeon SS A District Nurse DN An Oncologist ON A Nutritionist / Dietician ND A Complimentary Therapist CT A General Practitioner GP A Social Worker SW A Chaplain CH A Nursing Specialist NS A Palliative Care Specialist The ten subjects each underwent a semi-structured interview designed to address (a) knowledge and perceptions about available cancer supportive care information, (b) the information support available to patients and carers, (c) perceptions of unmet needs for cancer supportive care information, and how this relates to future service development, mindful of the cancer profile for Kent. Interviews were conducted by H.B and DO’N, by telephone, all within a period of four weeks and lasting an hour or less. The protocol for the study and the questionnaire used for the interviews were LREC approved and all subjects freely consented to participate. The questionnaire forms the basis of the interviews. The questionnaire appears as appendix 1 at the end of the report. The questionnaire used contained 12 sections.

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5.2

Quantifiable Survey Information

5.2.1

The frequencies of responses to the semi structured questions

Sections 1-8 &12 of the questionnaire contained semi structured questions which provided for both yes / no answers and open commentary from subjects. The findings therefore consist of some quantifiable data which can be used to represent the spread of opinion on particular issues. These questions relate particularly to peoples’ knowledge (or lack of ) of the existence of various types of information. The frequencies and proportionate distributions of positive and negative responses provide us with a simple profile of various aspects of information provision. Because the data comes from a small sample it is not particularly sensitive or hugely informative. The respondents provided yes or now answers, where they did not know the response neither was recorded and where they thought it was ‘in between ‘ both were recorded. The cumulative results therefore represent an amalgam of responses. Gross interpretation therefore roughly indicates a majority providing a positive response, a majority providing a negative response or a spread of opinion. On the following pages the proportionate distribution of opinions are demonstrated in tables 1-10.

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Table 1 Distribution of responses on Cancer Prevention Respondents were asked if they had information available about diet, relating to general issues in the prevention of the cancer in question. 50% said they had such information available for patients and their families. 50 % did not. 50% said they had such information available for professionals. 30% said they did not. 20% gave no response. Respondents were asked if they had information available about alcohol use, relating to general issues in the prevention of the cancer in question. 30% said they had such information available for patients and their families. 70 % did not. 40% said they had such information available for professionals. 40% said they did not. 20% gave no response. Respondents were asked if they had information available about smoking, relating to general issues in the prevention of the cancer in question. 40% said they had such information available for patients and their families. 60 % did not. 40% said they had such information available for professionals. 40% said they did not. 20% gave no response. Respondents were asked if they had information available specific screening, relating to general issues in the prevention of the cancer in question. 30% said they had such information available for patients and their families. 70 % did not. 40% said they had such information available for professionals. 60% said they did not. Respondents were asked if they had information available about early symptom changes, relating to general issues in the prevention of the cancer in question. 70% said they had such information available for patients and their families. 30 % did not. 60% said they had such information available for professionals. 30% said they did not. 10% gave no response. Respondents were asked if they had information available about smoking, relating to general issues in the prevention of the cancer in question. 40% said they had such information available for patients and their families. 60 % did not. 40% said they had such information available for professionals. 50% said they did not. 10% gave no response.

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Table 2 Distribution of responses on information about a suspected diagnosis of the cancer in question Respondents were asked if they had information available about symptoms associated with the cancer in question. 60% said they had such information available for patients and their families. 30 % did not. 10% gave no response 80% said they had such information available for professionals. 10% said they did not. 10% gave no response. Respondents were asked if they had explanatory information available about diagnostic tests used for the cancer in question. 70% said they had such information available for patients and their families. 30 % did not. 70% said they had such information available for professionals. 20% said they did not. 10% gave no response. Respondents were asked if they had information about how the results of tests for the cancer in question, would be provided. 40% said they had such information available for patients and their families. 40 % did not. 20% gave no response 50% said they had such information available for professionals. 30% said they did not. 20% gave no response. Respondents were asked if they had information available about possible locations and times of appointments for the cancer in question. 60% said they had such information available for patients and their families. 30 % did not. 10% gave no response 50% said they had such information available for professionals. 20% said they did not. 30% gave no response.

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Table 3 Distribution of responses on information about the cancer in question and its treatment Respondents were asked if they had information available about the disease in question 60% said they had such information available for patients and their families. 30 % did not. 10% gave no response 80% said they had such information available for professionals. 10% said they did not. 10% gave no response. Respondents were asked if they had information available about treatment options for the cancer in question. 60% said they had such information available for patients and their families. 30 % did not. 10% gave no response. 70% said they had such information available for professionals. 10% said they did not. 20% gave no response. Respondents were asked if they had information available about side effects of the treatment options. 60% said they had such information available for patients and their families. 20 % did not. 20% gave no response 60% said they had such information available for professionals. 10% said they did not. 30% gave no response. Respondents were asked if they had information available about the symptoms of the cancer in question. 70% said they had such information available for patients and their families. 20 % did not. 10% gave no response 70% said they had such information available for professionals. 10% said they did not. 20% gave no response. Respondents were asked if they had information available about the support groups for the cancer in question. 80% said they had such information available for patients and their families. 0 % did not. 20% gave no response 80% said they had such information available for professionals. 0% said they did not. 20% gave no response. Table 4 Distribution of responses on information about inpatient stays Respondents were asked if they had information available about the inpatient stay regarding practical arrangements 30% said they had such information available for patients and their families. 50 % did not. 20% gave no response 20% said they had such information available for professionals. 50% said they did not. 30% gave no response. Respondents were asked if they had information available about the inpatient stay regarding what to expect in hospital 30% said they had such information available for patients and their families. 60 % did not. 10% gave no response. 20% said they had such information available for professionals. 50% said they did not. 30% gave no response. Respondents were asked if they had information available about the inpatient stay regarding what happens after discharge 40% said they had such information available for patients and their families. 50 % did not. 10% gave no response 20% said they had such information available for professionals. 50% said they did not. 30% gave no response.

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Table 5 Distribution of responses on information about supportive and palliative care services Respondents were asked if they had information available about supportive & palliative care services for patients and their families relating to emotional support. Responses were as follows: Patients and Health care their families professionals Yes No Yes No Bereavement 50% 20% 80% 10% Spirituality 80% 20% 70% 10% Counselling 100% 80% 10% Relationship issues 60% 40% 50% 30% Psychosocial support (within NHS) 50% 50% 40% 40% Psychosocial support (in the private/voluntary 80% 20% 70% 10% sector) Respondents were asked if they had information available about supportive & palliative care services for patients and their families relating to practical support. Responses were as follows: Patients and Health care their families professionals Yes No Yes No Nutrition 50% 60% 40% 50% Prosthesis equipment 70% 30% 60$ 20% Housing issues 50% 20% 40% 20% Legal/rights 50% 20% 40% 20% Private Health Insurance 30% 50% 20% 40% Care in other countries/ travel 30% 50% 10% 50% Respite care 70% 20% 40% 20% Talking to families 60% 20% 30% 20% Financial Issues 60% 30% 60% 20% Complimentary Therapies (within NHS) 80% 30% 50% 30% Complimentary Therapies (in the private/voluntary 80% 20% 60% 10% sector) Inpatient palliative services (within NHS) 80% 10% 50% 10% Inpatient palliative services (in the 80% 70% private/voluntary sector) Hospital support 70% 30% 50% 20% Palliative home care 100% 10% 60% Day centres (within NHS) 40% 50% 20% 40% Day centres (in the voluntary sector) 70% 40% 70% 20% Clinical nurse specialists 100% 80% Specialist community nurses 80% 20% 70% 10%

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Table 6 Distribution of responses on the ways in which the information is made available? Cancer Prevention Yes 20%

Is there information for those with sensory impairments Information for those with learning disabilities Is there user involvement in the production of the information Is there a mechanism for recording what information has been given to patients Is there a mechanism in place for reviewing and updating the information Is there information culturally appropriate to

No 40%

Information about Suspected Cancers Yes No 10% 30%

70%

50%

90%

10%

50%

50%

50%

30%

50%

80%

20%

60%

20%

40%

40%

40%

20%

minority ethnic groups

Table 7 The proportion of respondents who identified a specific information source Library 40% Internet 70% GP Surgery 80% Help line 70% Outpatient clinics 90% Cancer information centre 50%

Table 8 The proportionate distribution of opinion on how well patients were informed about specific issues V. Poorly Prevention of xxxxx cancer Symptoms and diagnosing of xxxxx cancer The disease and its treatment Supportive and Palliative Care Services

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40% 10% 10%

Poor to Fair 40% 60% 10% 20%

Fair to Good

V. Well

10% 20% 50% 80%

10% 10%

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Table 9 The proportionate distribution of opinion on how well patients and their carers were empowered to make decisions relating to specific issues V. Poorly Prevention of xxxxx cancer Symptoms and diagnosing of xxxxx cancer The disease and its treatment Supportive and Palliative Care Services

30% 40%

In your view, how well does current practice empower patients and their carers to make decisions relating to : Prevention of xxxxx cancer Symptoms and diagnosing of xxxxx cancer The disease and its treatment Supportive and Palliative Care Services

V. Poorly

10%

30% 30% 10% 10%

Poor to Fair 40% 10% 20% 10%

Fair to Good

V. Well

20% 40% 40%

20%

Poor to Fair 40% 30% 10% 30%

Fair to Good

V. Well

10% 10%

10% 20% 60% 20%

20%

Table 10 The proportion of respondents who identified specific types of information sources available to health professionals? Guidelines 100% Databases 50% Journals 70% Website access/links 70% Webcasts 10% Cancer network 80% Intranet e.g. ‘quick place’/’autonomy’ 70% Contraversial topics in cancer 40%

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5.2 General findings which emerged during the structured part of the questionnaire 5.2.1 Information about cancer prevention, symptoms and specific types of cancer. In the acute setting information about cancer its prevention associated symptoms and the specific types of cancer appear to be provided to patients face to face, the written information available is limited and is produced nationally by Cancerbacup and Macmillan Cancer Relief. There is a patient information room within one of the oncology centres. Those working outside the acute setting were less aware of the availability of written information. A need was identified for information to be more tailored to local situations and appropriately resourced. A gap in the provision of information was identified, although written information is available not all the professionals interviewed were aware of the existence of certain forms and would rely on the clinicians and nurse specialists to provide the information. 5.2.2

Availability of information about inpatient stays

Patients are informed about the inpatient stay in a letter of pre-admission, they also receive advice verbally from the clinical nurse specialist. The information reaching the community or primary care settings relating to the patients admission varies in the amount and quality. It was recognised that there was a need for the information to be improved. 5.2.3 Availability of information about supportive and palliative care settings There appear to be variable amounts of written information available. There is an issue surrounding the availability of information on the subject of practical support. Social services do provide a booklet for hospice patients. However this was not mentioned by health professionals in the acute, or primary care, or hospice settings. This suggested that they were unaware of the booklet that it was available. Different members of the cancer network need to be made aware of the literature provided by different professional groups in order to deliver a holistic approach to care. 5.2.4

Format of information

From the data it appears that staff rely on using verbal communication to inform patients about their condition. From the literature there is evidence of the importance of information to empower patients and assist the decisionmaking processes. The need for information to be provided or made available in different formats has also been discussed. From the interviews it is evident that there is limited information accessible to ethnic minorities and those with special needs, although the social worker did describe information that was provided for children and families in the form of videos, and a work book.

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Much of the information that is provided in the network comes from national organisations and indeed the professionals recommended the websites of Bacup to their patients. There is therefore a need to explore the provision of local information for patients. It is not only patients who require information, professionals need to be kept up to date with services and any new forms of treatment. Some professionals were better able to access this than others. Another consideration is the way in which professionals gather and disseminate information for audit purposes. The district nurse interviewed described how, previously, all the patients who she visited had their details fed into a hand held computer, but since her employing authority had changed (under ‘Shifting the Balance of Care’), she had had to give up the hand held computer and had reverted to hand written notes. The team of 15 nurses subsequently had access to one fixed location personal computer. She had no simple mechanism for feeding back information about the patient to the GPs.

5.3 Qualitative Analysis

Survey

Information:

Qualitative

Data

Sections 1-8 &12 of the questionnaire also provided for open commentary from subjects and sections 9-11 of the questionnaire contained open questions. The output from these questions has provided a very rich and informative collection of opinions and perceptions from inside the cancer network in Kent and Medway. It provides an insight as to how the network appears to be addressing these issues. Because the sample was a small and diverse group it was felt that in depth thematic analysis was not appropriate and an inductive approach was adopted. In the first section the general impressions gathered from the structured part of the questionnaire are discussed and in the second section the data from the open questions is presented in a simple matrix format. (Miles and Huberman 1994). 5.3.1

Empowerment

In the literature there were a number of ways in which it was thought that patients could be empowered: by helping people to assert control, providing information, communication, with information and communication being necessary for decision making, the relinquishment of professional power, and the freedom to make choices. In table 11a these characteristics of empowerment and how people can be disempowered are presented under the following headings: control, information, communication, professional power and choice.

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From table 11a it can be seen that there are a number a factors which were thought to empower or disempower patients and their carers. There is general consensus that the provision of information and how it communicated is important, however that also the provision of information in itself cannot empower people. A further requisite of empowerment that was raised in the interviews was the need for front line staff to be empowered, and it was also thought that performance management is incompatible with empowering patients and their carers. 5.3.2

Dignity

Dignity is part of being a person, it is something that comes from being human, and having self-respect, but also through social and political roles. The interviewees provided a range of definitions of dignity from the personcentred individual characteristic to the socio-political position with the way that professionals treat the patient. In table 11b these definitions of dignity are presented. The definitions on the left hand side of the table are those which focus on the patients dignity as coming from the individual as we move across the spectrum those on the right revolve around the idea that dignity is something that professionals give to patients in the way in which they treat them. However it was also suggested that it is also important to recognise that one’s assessment of dignity may change with time or circumstances, it is not a static concept and therefore needs to be reviewed with patients throughout their care. Also in table 11b are opinions of how a person’s dignity may be maintained or impaired again there is a range of views from those that see the patient as the individual as the focus, to the organisational factors which may impair a person’s dignity, the rushed consultations and professionals not sharing information between each other. 5.3.3 Holistic Approach From the interviews three distinct perspectives of a holistic approach to patient care emerged: Ø The patient as the individual- seeing the patient as a whole person Ø The patient as part of a family unit-seeing the patient as a whole person including the family relationships Ø The professionals approach –service orientated, with access to all services. However some of those interviewed defined holistic care from more than one of these perspectives providing examples of each, and references were made to the way in which multidisciplinary team work contributes to a holistic approach to patient care. In table 11c examples of the different perspectives are given, only one reference to each perspective is provided, these were chosen on the basis of being succinct, and may not have been the only definition provided by the individual. A number of different ways in which a holistic approach to care can be achieved is also presented within the table.

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Table 11a Characteristics of Empowerment [To 'empower' is to give authority to, or to enable, and enablement is about changing the nature and distribution of power. Mason et al. (1991)] Control Professional Power Information Communication Choice Empowering More proactive information Individual clinicians To improve-difficult To improve situation That patients do and exchanging of views. need to become more not really in terms of more health promotion. have a choice about (CT) aware through change specific information Education of GPs and the treatment they factors such as more about the way Practise Nurse. have and they can education, generation people are treated the Standards of care and say no to it and shift, litigation (2-edged way they are spoken communication flexible that’s an OK sword) (SS) to and listened to approach, and access to decision sometimes really (CH) people. (ND) so it is something about getting a match between the philosophy and the practice. (SW) Disempowering

I hear a lot of people talking about feeling.. not using the word disempowered but certainly feeling that, from not seeing people when they wanted to, having to wait long lengths of time, having a wrong diagnosis, feeling they were a small cog in a big machine, and not really knowing what was going on (CH)

To enhance personal relationship tends to enhance empowerment while speedy impersonal leaflet based systems meet performance indicators but don’t improve empowerment. (GP)

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Where current practise does not sufficiently empower patients and their carers to make decisions in the prevention of cancer. Written information is poor, national only, only written information nothing for people with disability. (NS)

Current practise does not sufficiently empower patients and their carers to make decisions relating to the prevention of cancer and symptoms and diagnosing of cancer because of lack of communication and its relevance to patient and family needs. (PN)

Patients need to be given more time to make decisions. (CT)

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Table 11b Characteristics of Dignity [Dignity is 'an essential human state and many individuals wish to die as they have lived, thus achieving good control of symptoms and alleviating fears, anxieties and psychological problems are important steps towards achieving dignity’. Higginson (2001)] Patient Patient Patient/Professional Professional Professional Defining Dignity Something that is Dignity is the Its about patients feeling Treating them with Looking at the patient self-defined by the maintenance of the that that their individual respect, allowing them as a person rather patient (SW) patients normal needs and requests are to make decisions, than a collection of standing in their every heard, not necessarily giving them privacy to organs. (GP). day life (CT) can always be met but make decisions. (NS) that they are listened to (CH)

Maintaining Dignity

Impairing Dignity

Respect Dignity is about being respected as a human being, and heard and listened to, wishes complied with where possible and reasons given where not possible (CH) Dignity can be impaired by taking away their feeling of being an individual and becoming just a number. (CT)

Listening Listening (GP)

Dignity can be impaired, certainly by not listening to them and not taking them as the centre of focus of the care, of the treatment (SW)

Informing Ascertainment of the knowledge they have and their capacity to accept knowledge. Sharing relevant information across professionals. Ignoring this will impair dignity (DN) Patients’ dignity can be impaired by giving them information in the middle of a public place. (NS)

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Education Measures that can be taken to ensure the maintenance of patients dignity, are education to increase awareness of needs, communication skills and resources (PN) Attitudes of clinicians, nurses, secretaries and all supporting staff are very important. Lack of consideration is main barrier to maintaining patients dignity (SS)

Organisation Ensuring adequate time is given to consultations, and appropriate resources (CT).

By being open and honest, if you get anyone in the professions who is holding back from the patient that is when they are going to lose their dignity. (NS)

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Table 11c Characteristics of a holistic approach to cancer care [‘holistic medicine’ is said to be, a form of medical treatment that attempts to deal with the whole person and not merely with his or her physical condition (Oxford English Dictionary 2002).] Individual The individual as part of a unit Professional/Service orientated Perspectives Holistic is an attitude of each Seeing them as part of a unit, so Holistic means good teamwork and a individual working with a patient are one part of a system maybe number of different professionals rather than being narrow minded part of their family, maybe part of who perhaps have different ways (the human side of things) (GP) their work system. How they define from each other respecting each themselves in terms of their other and working together. (CH) relationships. (SW). Ways of achieving a holistic A holistic approach is treating the How the patient is treated, not just Means getting the whole picture, approach. patient as a human being, an treated as a medical case or getting access to all available individual with a problem, not somebody whom certain nursing services, meeting all the people treating the problem or disease in procedures are going to be done, concerned..//.Ensuring provision will isolation. (CT) the whole of their relationship, their be through meetings with family their interests being taken professionals, communication, The whole person, looking at every into consideration as part of their patient access to information, some aspect. The person themselves so care. (CH) joint visits by professionals. (DN). you would obviously be looking at physical, psychological, social and Looking at physical, psychotic, Taking the patients issues into spiritual. (NS) spiritual needs of families consideration. The variability of this throughout the illness and is related to variable patient Holistic approach is looking at the bereavement process. (PN) experience. Education should be patient as a whole- all the different tried but does not change some aspects of their needs, physical, Need to understand patients the people. (SS) emotional and spiritual. We should circumstances of living and their strive for every patient at the understanding and experience of Measures that can be taken are oncology centre to experience this cancer (ON) education of staff involved and a shift approach. (ND). in approach from a disease base to an individual base. (CT)

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Conclusions from the study of provider views The study discovered substantial diversity of views and understanding of the information needs. Those working outside the acute setting were less aware of the availability of written information than those in the acute setting. Quality of information relating to patients’ admissions varies. A need for some improvement is noted. Different members of the cancer network need to be made aware of the literature provided by other professional groups, in order to deliver a holistic approach to care. There is evidence that information accessible to ethnic minorities and those with special needs is limited. Some professionals were better able to access up to date information and education than others. The more distributed care becomes at a community level, the more variable the standards of information gathering and use become. There appears to be an outstanding need for determining information standards at the periphery. Also proposed that while provision of information to patients is important, it not likely to empower patients without front line staff being empowered. Performance management is seen as incompatible with empowering patients and their carers. A range of definitions of dignity from the person-centred individual characteristic to the socio-political position with the way that professionals treat the patient arose from the interviews. Opinions of how a person’s dignity may be maintained or impaired were put forward. Three distinct perspectives of a holistic approach to patient care emerged.

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10. Bucher J, editor. The Application of Problem-Solving Therapy to Psychosocial Oncology care. Haworth Medical Press New York, 1999. 11. Canadian Strategy for Cancer Control: Supportive Care/Cancer Rehabilitation Workgroup. Final Report, 2002. 12. Cartwright A. Balance of care for the dying between hospitals and the community: Perceptions of general practitioners, hospital consultants’ community nurses and relatives. Br J Gen Pract 1991; 41: 271-74. 13. Casseileth (1986) Unorthodox cancer medicine. Cancer Investigation 4 (6) 591-8

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