DIAGNOSING DYING. Defining End of Life Care. For People with Cancer and Non Cancer Diagnoses. February 2008

Transcription

1 DIAGNOSING DYING Defining End of Life Care For People with Cancer and Non Cancer Diagnoses A Position Paper February 2008 Page 1 of 66 20/05/2008

2 CONTENT Page Foreword and Overarching Vision The Purpose of this Paper Northern Ireland Demographics and Diversity Defining and Directing End of Life Care: 3.1 A Trajectory of Terms Diagnosing Dying General Strategic Direction Choice Care Closer to Home Quality and Health Improvement Education and Research Summary of tools and evidence of best practice Gold Standard Framework Preferred Place of Care Liverpool Care Pathway Challenges to Supporting Best Practice Conclusion List of Recommendations Appendices 1. Membership of End of Life Care work strand Literature Review References and Bibliography Scope, appraisal and evaluation of Liverpool Care Pathway Scope, appraisal and evaluation of Gold Standards Framework Scope, appraisal and evaluation of Preferred Place of Care 62 Page 2 of 66 20/05/2008

3 End of life is a period of time during which a person s condition is actively deteriorating and when death is expected End of Life Care helps all those with advanced, progressive, incurable conditions to live as well as possible until they die. It enables the supportive and palliative care needs of both the patient and the family to be identified and met throughout the last phase of life and into bereavement. It includes physical care, management of pain and other symptoms and provision of psychological, social, spiritual and practical support. (National Council for Palliative Care, Focus on commissioning, Feb 2007) Page 3 of 66 20/05/2008

4 Foreword It is hard to have patience with people who say 'There is no death' or 'Death doesn't matter.' There is death. And whatever is matters. And whatever happens has consequences, and it and they are irrevocable and irreversible. You might as well say that birth doesn't matter." C S Lewis, 1966 Life and death are separated by a variable timeline. Much is invested into our support, care and safety as we enter life. Mothers are given choices about the nature of care they wish to receive and much emphasis is placed on the planning of a safe and uneventful birth. Indeed the measure of the state of health and services are often gauged by infant mortality rate. In contrast there is often a sense of failure when life can no longer be medically sustained. The diagnosis of dying is typically devoid of any sense of hope. There is a need to identify this significant period of time and care and establish the same expectation of choice, safety and quality of care through this experience as at the start of life. Confusion about the meaning of medical terms is perhaps one area of commonality between the two spectrums of life and death. A breadth of evidence identifies the challenge for patients, the public, clinical staff, providers and commissioners to understand such terms as supportive and palliative care. A further challenge for all involved is to choose whether to acknowledge or deny that death is actually approaching. There is a need formally to identify end of life as a unique and ultimate period within a person s pathway of care. Acknowledgement of this period provides an opportunity to deliver high standards of care, grounded in choice and responsiveness to needs for both the patient and their family. Page 4 of 66 20/05/2008

5 A heightened agenda for End of Life Care is evolving both nationally and internationally. A more inclusive paradigm for end of life care; for managing people dying from other conditions as well as cancer will be necessary as demographics continue to shift in the future. A focus on needs, rather than diagnosis, is required to promote supported choices, good pain and symptom management and a dignified death. Central to this desire to improve end of life care for all patients, irrespective of diagnosis, includes the provision of a greater choice for patients in their place of care and death. In addition there is a desire to reduce the number of emergency admissions to acute care for those who have expressed a wish to die at home and reduce the number of patients transferred from care homes to acute care in the last days and weeks of life. An Overarching Vision The Supportive and Palliative Care network aim to move towards a position where any patient, from diagnosis to the advanced non-curative stage of disease (cancer and non-cancer), in any setting, lives well and dies well, in the place of their choosing. This requires a person centred, integrated and holistic approach to service planning and delivery. This focus will ensure that all patients will receive high quality reliable care, retain control, choice and dignity to the end of their life. Page 5 of 66 20/05/2008

6 1.0 The Purpose of this Paper The purpose of this paper is to promote discussion, and a greater comprehension, with regard to current end of life care for adults in Northern Ireland. The paper captures the demographics and diversity within the complex nature of this care and, through the objectives stated below, makes recommendations to shape and inform the future direction of end of life care in Northern Ireland. This paper will: Objectives of the position paper a) Review relevant literature with regard to end of life care b) Scope, appraise and evaluate the three existing end of life care tools currently in use i.e., Liverpool Care Pathway (LCP), Gold Standards Framework ( GSF), Preferred Place of Care ( PPC) c) Define end of life care in relation to the Supportive & Palliative care continuum for patients with cancer and non-cancer. d) Draw conclusions on the work, making recommendations in relation to; policy, practice, education and research. e) Inform policy makers, commissioners and providers in regards to best practice, to support the delivery of end of life care by health & social care professionals. This paper has been compiled by a working group of members of the Supportive and Palliative Care network. (Appendix 1, Membership of End of Life Care work strand) It is hoped to promote further consultation and dialogue to ensure the principles set out within this position paper are appropriate for all palliative care patients and their families. Page 6 of 66 20/05/2008

7 2.0 Northern Ireland Demographics and Diversity Every year approximately 14,000 people die in Northern Ireland. Analysis of these deaths indicate that on average 26% are cancer related deaths (see Table 1) Table 1: Annual incidence of deaths, TRUST Population (2001) All deaths Cancer deaths Cancer deaths as a % of all deaths BELFAST 343,879 3, NORTHERN 426,965 3, SOUTH EASTERN 322,089 2, SOUTHERN 311,119 2, WESTERN 281,215 2, TOTAL 1,685,267 14,354 3, Cancer is, however, not the leading cause of death in Northern Ireland. Circulatory diseases account for 35% of deaths, respiratory diseases 14% and other disease a further 19%. Increasing recognition of the palliative care needs of long term conditions highlight that two thirds (9570) of the annual deaths would benefit from palliative care during their last year of life. but for reasons of diagnosis are excluded (National Council for Palliative Care, 2005 and 2007b) Figure 1: Cause of Death in Northern Ireland, 2005 Cause of Death External Causes 761 Other Diseases 2714 Respiratory Diseases 1921 Cancers 3826 Circulatory Diseases Page 7 of 66 20/05/2008

8 Cultural and Ethnic Diversity It is much more important to know what sort of a patient has a disease, than what sort of disease a patient has - Sir William Osler, 1911 The philosophy of palliative care affirms person centred, holistic care and values patient and family lives, beliefs and preferences. As more countries join the European Union, Northern Ireland has seen an increase of migrant workers. The demographics of the country reflect increasing cultural and ethnic diversity. This changing profile requires cultural competence in end of life care. Western models of communication, applied non-selectively without attention to individual values and beliefs, may result in inappropriate practice. Table 2 provides some insight into the cultural diversity within Northern Ireland. Table 2: Breakdown of Ethnic Groups 1 Trust Area All persons White Irish Traveller Mixed Indian Pakistani Bangladeshi Other Asian Black Caribbean Black African Other Black Chinese Other ethnic Northern Trust Belfast Trust South Eastern Trust Southern Trust Western Trust Source: NISRA, Census 2001, Crown Copyright Page 8 of 66 20/05/2008

9 3.0 Defining and Directing End of Life Care 3.1 A Trajectory of Terms Supportive care is an umbrella term for all services, both generalist and specialist, that may be required to support people with life-threatening illness. It is not a response to a particular disease or its stage, but is based on an assumption that people have needs for supportive care from the time that the possibility of a life-threatening condition is raised. (National Council for Palliative Care, 2002) Palliative care is the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments. (WHO, 2002) End of life care - Helps all those with advanced, progressive, incurable conditions to live as well as possible until they die. It enables the supportive and palliative care needs of both the patient and the family to be identified and met throughout the last phase of life and into bereavement. It includes physical care, management of pain and other symptoms and provision of psychological, social, spiritual and practical support. (National Council for Palliative Care, Focus on commissioning, Feb 2007) Capturing some of these aspects diagrammatically may foster a better understanding when positioning end of life care within a continuum of supportive and palliative care, Figure 2 also emphasises the importance of assessment of need throughout the patient pathway. Figure 2: Continuum of Care (DOH, 2005) Patient Pathw ay Review Id e n tify needs Im plem ent Assess n eed Plan supportive and palliative care deterioration death/bereavem en t End of life Care Page 9 of 66 20/05/2008

10 That a person is dying is not an altogether straightforward notion - Sudnow, 1967 Understanding the terms Palliative Care and End of Life Care and that a person is dying is of significance to the patient, their families, carers, providers, commissioners and policy makers. Advances in the treatment regimes for cancer and other chronic life limiting diseases have seen an elongation in the duration of palliative care, the essence of care when cure is no longer possible The literature review (detailed in Appendix 2) identified the difficulty in defining the concept of end of life care. It concluded that, the term end of life is not clearly defined and is often associated with palliative care in a way that causes confusion and misunderstanding. End of life care is under researched from the perspective of patient, family and caregiver experience, and differs according to disease and condition. To enable effective end of life care, across a range of conditions and facilitating choice of place of death, a single and worldwide definition for end of life is needed. Setting this definition in the context of the wider field of palliative care would be helpful. It has not been possible to identify a specific and time-framed definition for the term end of life in the literature. In the U.K, the tools proposed to support the End of Life initiative (DoH, 2005), require the knowledge that someone is predicted to have a clearly defined period of time to live. In the case of the Gold Standards Framework (GSF) this time frame is six months, whereas the Liverpool Care Pathway (LCP) is concerned with the last few days of life. The consensus of the working group is that, for the purpose of this paper, end of life will mean, A period of time during which a person s condition is actively deteriorating and when death is expected. Recommendation 1: An understanding of the terms supportive care, palliative care and end of life care should be promoted, to enhance a coordinated care approach and ensure the provision of good quality end of life care services. Page 10 of 66 20/05/2008

11 3.2: Diagnosing Dying In some cases the nearing of the end of life may be recognised for what it is by the patient. In other cases it may be the judgement of the health or social care professional individually or as a team, which identifies distinctive characteristics triggering recognition of the dying process. Acknowledgment of this period is significant to ensuring that appropriate care will be planned and that responsive services will be available and well coordinated. There is also a heightened need for the respect of humanity and dignity. Furthermore there is need to recognise and support the family and the patient s wider circle of support. (National Council for Palliative Care, 2006) Cancer is often perceived to have a more predictable illness trajectory affording the opportunity to enable the recognition and mobilisation of support and resource to enhance the quality of end of life care. A less predictable illness trajectory is associated with other life limiting diseases, such as heart failure and chronic respiratory disease. It is argued, that in many instances there is a window of opportunity to bring the essence of good end of life care to a patient s dying experience, no matter how limited the time available. The challenge to diagnose dying has seen the development of clinical indicators to help inform professional judgement. Prognostic indicators have been derived from the Gold Standards Framework (2006). These include: The surprise question. Would you be surprised if this patient were to die in the next 12 months? Choice. The patient with advanced disease makes a choice for comfort care only. Need. The patient with advanced disease is in special need of supportive /palliative care Clinical indicators. Specific indicators of advanced disease for each of the three main groups people with cancer, organ failure, and elderly frail/dementia. Page 11 of 66 20/05/2008

12 Lack of recognition of end of life care has the potential to deprive care for the dying person and their family, culminating in a poorly coordinated, unresponsive and unidentified approach to unique needs at this time. Considering ways to promote more effective end of life care in nursing homes, Hockley et al (2005) identified five main themes that were contributing to a shift in perspective, these are: A greater openness around death and dying Recognising dying and taking responsibility Better teamwork Critically using palliative care knowledge to influence practice More meaningful communication. Recommendation 2: Professional and public openness around dying and death should be encouraged. All professionals require enhanced communication skills in order to initiate such discussion, to help people find meaning in their dying and with the aim of promoting better palliative and end of life care. The National Council for Palliative Care (NCPC, 2007) suggest the following underpinning principles should inform best practice in relation to end of life care. These principles provide the opportunity for health and social care professionals not only to meet the expectations of patients and families but also to utilise their skills and values in the delivery of care. An active and compassionate approach to care that ensures respect for and dignity of the patient and family. Partnership in care between patient, family and health and social care professionals Regular and systematic assessment of patient/carer needs incorporating patient consent at all times Anticipation and management of deterioration in the patient s state of health and well-being. Page 12 of 66 20/05/2008

13 Advance care planning in accordance with patient preferences Patient choice about place of care and death Sensitivity to personal, cultural and spiritual beliefs and practices Effective coordination of care across all teams and providers of care (in statutory, voluntary and independent sectors) who are involved in the care of patient and family. The Supportive and Palliative Care network End of Life Care group support the inclusion of bereavement care as a further underpinning principle pertinent to good end of life care. Recommendation 3: Communication is an essential feature of quality health and social care service delivery. There is a therefore a need to ensure effective communication of patient information with the individual and with relevant professionals and across care settings. 3.3 General Strategic Direction We need to create a context in which dying, death and bereavement can be developed as a matter of public concern and where the concept of a good death is a valid aspect of social and public policy Pat Cox, 2006 Former President European Parliament As there is 100% mortality, end of life care is a matter that faces every individual and the whole society. Yet there is a lack of specific end of life care policy within Northern Ireland. General strategic direction, for the delivery of end of life care services, can be derived throughout a number of National and Local policies. A review of pertinent policy and supporting evidence has been themed in the paragraphs which follow. Recommendation 4: To promote the early recognition of the dying process, the principles of end of life care should be embedded within regional service frameworks across the range of illnesses and evidenced through the NICE guidance for Supportive and Palliative Care (NICE, 2004) Page 13 of 66 20/05/2008

14 3.4: Choice Informed through a substantial public consultation exercise, the Government White Paper: "Our Health, Our Care, Our Say" (DOH, 2006), sets out plans for the delivery of health services promoting choice at the end of life. Whilst this paper has little direct impact within the devolved administration for Northern Ireland, its value lies in the comprehensive public consultation, which reflects substantively findings of studies undertaken nationally and locally. From an economic perspective it has been recognised that around a quarter of the entire healthcare someone utilises in their lifetime is consumed in the last year of their life (The Wanless Report, 2002). Given this level of use, it is therefore critical, that services are effective in meeting the individual needs of patients and families. Investment in end of life care services was proposed in Building on the Best (DoH, 2003) The funding was targeted towards moving care from acute to community settings, enhancing the skills base of generalists and thereby improving patients' choices at the end of life. Some factors which influence choice at the end of life have already been reflected within this paper. These emphasise the need for greater social, cultural and political awareness around death and dying. A recurrent reflection of personal choice within the literature prioritises home as the preferred place of care and death. If death in ones own home is not possible, the alternative is to die in a homely place. This reflects the image of hospice care or a care home where there is an ethos of individuality and respect. Alternatively, death in hospital should respect privacy and dignity. A recent launch of a Hospice Friendly Hospitals Development Programme in Ireland (2007) seeks to promote integrated care, communication, dignity and patient autonomy to transform the culture of care and organisation around dying, death and bereavement. The evidence supports the premise that most people have a preference for home based care and death. Whilst this preference may change somewhat as the Page 14 of 66 20/05/2008

15 patients condition deteriorates, a preference for hospital centred care and death appears to be uniformly low. (See Table 3) Table 3: Summary of Examples of Choice Studies Study Sample size Findings You Gov survey ( April 2006) 2000 When asked where their preferred place of care would be should they suffer from a terminal illness. 64% identified home as their preferred place. Objective evidence from public and professional experiential knowledge. On-line BMJ survey 1533 What is a good death? 74% identified a home death as being one of the features. (2003) Objective evidence from public and professional experiential knowledge. Thomas (2003) Quantitative and Qualitative study 41 Captures the preferences of actual patients in the final 3 months of their life. The results showed that of those interviewed 36% expressed a preference for home death, 32% had an equal preference for home or hospice death and 29% expressed a preference for a hospice death. No patient in this study expressed a desire to die in hospital. BMJ (2006) a systematic review of the factors which Analysis and comparison of the results of 58 studies that had 80% of whom had cancer, there was high strength evidence for 17 factors influencing place of death. Of these, five were strongly associated with home death. influence original data on 1. Patient preference place of risk factors for 2. Patients deteriorating condition death place of death 3. Home support and its intensity (i.e. amongst amongst hands on support and frequency of visits) patients. patients 4. Living with relatives 5. Extended family support Page 15 of 66 20/05/2008

16 Figure 3, below, demonstrates the contrasting figures when comparison is made between preferred choice and actual place of death in Northern Ireland, only 27% of patients died at home. Whilst these statistics reflect all deaths, we are reminded of the numbers captured earlier in Figure 1 who will die of a chronic disease. Figure 3: Deaths Registered in Northern Ireland by Place of Occurrence in 2005 Number of Deaths Registered in Northern Ireland by Place of Occurence, ,224 NHS Hospital 8,104 16% Other (deaths at home and in public places) 3,825 27% 57% Other Hospital/Nursing Home/(Psychiatric Hospital 37 deaths) 2,295 Expectations may not always be realised and patient experience within Northern Ireland can be variable. Patients preferences are not always elicited by health and social care professionals. End of life care may be characterised by unnecessary admissions to hospital. Community based services may lack responsiveness throughout a 24hour period and carers may feel unsupported at the most critical of times. Page 16 of 66 20/05/2008

17 3.5: Care Closer to Home Several strategic documents support the concept of care closer to or within the home. Developing Better Services- Modernising Hospitals and Reviewing Structures (DHSSPSNI, 2002) set out the plans for the future organisation of acute hospital provision within NI. This modernisation plan proposed a system of acute hospital services networking with local hospitals and supporting care in the community. The Primary Care Strategy framework, Caring for People beyond tomorrow (DHSSPSNI, 2004) provides a vision for Primary Care for the next 20 years. It acknowledges, amongst other things, the shift in workload from the acute sector to Primary Care, and the emergence of new service developments to prevent inappropriate hospital admission or facilitate early discharge. The DHSSPS, Twenty Year Vision for Health and Wellbeing in Northern Ireland (DHSSPSNI 2005) gives the direction for travel of future health and social services, placing a strong emphasis on the promotion of public health and engagement with people and communities. Significant to this will be the development of responsive and integrated services aiming to treat people in communities rather than hospitals. A more effective and efficient way of working through multi-disciplinary teams to improve the quality of services was highlighted. The Delivering Choice Programme, pioneered by Marie Curie Cancer Care, aims to develop and help provide the best possible services for palliative care in order to give people with advanced progressive disease the choice over where they are cared for and die. Recommendation 5: Future service models should acknowledge and support the importance of patient and carer choice regarding the delivery of care. Such models should aid the seamless transfer of patients between services, and promote continuity of care involving generalist and specialist health and social care professionals as well as those from other agencies. Page 17 of 66 20/05/2008

18 4.0: Quality & Health improvement End of life care may not instantly be perceived as a significant theme within improving health and well being. Yet it is important to recognise the impact on health and well being felt by addressing quality of life, and indeed death through person centred care inclusive of patient and family. The quality of the experience on carers is critical and can assist in the bereavement process and reduce stress related illnesses in the future. One of the objectives of the new GMS contract (2004) was the incorporation of evidence based and quality focused clinical and organisational targets. In this regard it has been beneficial that palliative care is now recognised as a clinical domain within the Quality and Outcomes Framework (QOF). However, it should be recognised that current QOF palliative care targets lack the detail and rigour required to guarantee best practice for all. As such they should be viewed as a welcome start on the journey to evidence based, standards oriented palliative care. The End of Life Care initiative (DoH, 2005) sets out to improve and enhance the care of patients in the last days of life. A variety of End of Life care tools have been developed and have greatly enhanced the ability of care teams to deliver best care to patients. Tools such as The Gold Standards Framework (Thomas 2003), the Liverpool Care Pathway (Ellershaw 2003) and the Preferred Place of Care Plan (DoH2006) have been made available to teams and have at times been successfully implemented. To date however there has not been a coordinated implementation strategy in Northern Ireland and this has inevitably led to uncoordinated, patchy and incomplete implementation with consequent sustainability problems. Recommendation 6: End of life care tools (such as The Liverpool Care Pathway) should be embedded into practice across all care settings and used effectively on the basis of individual need. This will require new investment to support facilitation and promote sustainability through evaluation of the impact of such tools. There should be regional audits of existing guidelines to evaluate end of life care in practice. Page 18 of 66 20/05/2008

19 National Service Frameworks (NSF) have been developed as evidence based standards to increase quality and tackle variations in care. Northern Ireland is adopting a similar approach with the development of service frameworks across a number of areas, many of which will encompass end of life care. Given this approach there is a danger that the further development of end of life services remains piecemeal and uncoordinated. The development of a specific service framework for end of life care, supporting and complementing other service frameworks, could ensure that further developments remain co-ordinated and complete. Recommendation 7: Whilst it is understood that current and future Regional Service Frameworks will incorporate standards and quality indicators for palliative and end of life care, it is recommended that over time there should also be a specific Service Framework in Northern Ireland for Palliative and End of Life care The NICE Guidance on Improving Supportive and Palliative Care for Adults with Cancer (2004) provides direction and comprehensive recommendations reflective of holistic care. These recognise the importance of, for example, user involvement, coordination of care, assessment and response to holistic needs, information giving, psychological support services and access to specialist palliative care services. There has been a recent public consultation on the Cancer Control Programme (2006), the first of a series of documents that will form a Regional Cancer Framework within NI. Within the 55 recommendations, the need to assess supportive and palliative care needs at each stage of the cancer journey is recognised. Added to this is the need to develop action plans for the implementation of recommendations for best practice contained within National Institute for Clinical Excellence (NICE) Guidance on Improving Supportive and Palliative care for Adults with Cancer (2004). Local policy development in relation to Cancer services Investing for the future (DHSS, 1996) has shaped the structural organisation and delivery of treatment and care of people with cancer within NI. This included the Page 19 of 66 20/05/2008

20 establishment of specialist multi-professional palliative care teams within the cancer centre and units. Partnerships in Caring (DHSS, 2000) reviewed palliative care services making a number of recommendations in relation to the provision, models and quality of palliative care services. The strategy also set standards with regard to workforce development and education, recurring themes necessary for the effective coordination of services. This requires organisations throughout the statutory, voluntary and independent sector to work in partnership. There is presently little guidance for commissioners to enable them to comprehend and procure good quality end of life care. Work on in this area is beginning to evolve through the policy department of The National Council for Palliative Care (NCPC) Focus on commissioning, End of Life Care, (NCPC, 2007) Recommendation 8: To support effective commissioning there is a need for a clearly defined service specification for generalist and specialist levels of palliative care provision within; hospitals, hospices (inpatient, day care, community) and hospice at home services, primary and community care, care homes and out of hours services Supportive and Palliative Care has been an integral part in the early development and establishment of the cancer network. The establishment of the Supportive and Palliative care network in March 2006 provides a mechanism to shape and inform quality outcomes framework and promote multi-disciplinary assessment. It has been widely recognised that fundamental to and underpinning the prioritisation of future planning and delivery of care has been the need to undertake a comprehensive population-wide assessment of supportive and palliative care need across Northern Ireland. This work will inform the modernisation and reform necessary within supportive, palliative and end of life care to ensure equity of services and advocate effective solutions, which are clinically and cost effective, safe and sustainable. Page 20 of 66 20/05/2008

21 There is a wide agreement that End of Life Care does not end with the death of a person, but extends to the provision of support to those bereaved. The importance of bereavement care has been endorsed by the DHSSPS which established the Northern Ireland Bereavement Network in 2006, in accordance with the recommendations of the Human Organ Inquiry (2002). The purpose of the network is to promote the provision of a compassionate bereavement service to the dying and their relatives. This will be achieved through the development and co-ordination of bereavement care, standards and training within the statutory sector and by promoting effective partnerships with the voluntary and community sectors, as well as bereaved families and friends. There is a momentum to develop End of Life care networks within England. Presently in Northern Ireland End of Life Care is perceived to be absorbed within the capacity of the Supportive and Palliative care network. It is however acknowledged that collaboration with other Clinical Networks will be required to encompass conditions beyond cancer. Recommendation 9: A robust assessment of need across the region is necessary to ensure appropriate, responsive and well coordinated high quality services are available. It is anticipated that this assessment of need would promote efficiency, equity and would enable the commissioning of effective services. Page 21 of 66 20/05/2008

22 5.0: Education and Research A briefing paper on end of life care for older people, (Help the Aged, 2006) highlights the need for education and training programmes for all health and social care staff working in hospitals, care homes and domiciliary care. Examples of project work, across care homes in Northern Ireland, have been positively evaluated, but need to be sustained e.g. the work on extending palliative care education to nursing home staff across the Eastern Health Social Services Board area, (Northern Ireland Hospice Care, 2007); and extending palliative care education to nursing home staff across the Northern Health Social Services Board area, (Marie Curie Cancer Care, 2007) The hospice model of care is seen as a model of excellence to deliver high quality care. Hospices and other specialist palliative care services provide an important role as enablers; they provide inpatient care, care in the community and stimulate service development. They are a frequently preferred place of care and provide an important link between acute and community care. In addition here they offer services to bereaved relatives. They have an advisory and educational role to influence the quality of care in the community and in hospitals. The major challenge is to transfer best practice from a hospice setting to other care settings and to non-cancer patients. It is important that educational programmes lead to empowerment of generic healthcare workers providing generalist palliative care. The Supportive and Palliative Care network have developed a competency framework for generalist and specialist palliative care ( 2008) Recommendation 10: End of life care, should become a core element of all pre- registration, post registration and clinical education programmes. Further opportunities for multi-disciplinary and multi-professional learning should be developed. Such learning should enable professionals to develop sound knowledge, skills and competencies around palliative and end of life care. These learning opportunities should be accessible and flexible reflecting a wide range of models of delivery to ensure greatest impact Page 22 of 66 20/05/2008

23 Recognising that quality is underpinned by education, a further significant dimension which enhances the quality and educational development of care is research. To date there has been a dearth of strategic thinking about the development of education, training and research in palliative and end of life care (Clark, 2007). In Northern Ireland there is a small but growing body of research, much of it undertaken in pursuit of higher degrees. Recently there has been a ground swell of interest in the development of an All-Ireland Institute for Hospice and Palliative Care. The potential of this initiative will encompass education, training and research, and seek to enhance the capacity to develop knowledge, influence policy and shape practice Academic posts in palliative care are evolving within universities and in partnership with the voluntary sector hospices and charities. This should support the dissemination of research outputs into practice. Recommendation 11: There is an urgent need to strengthen the infrastructure of research and development within supportive, palliative and end of life care. Clinical and academic research should be undertaken through the identification and targeting of funding and grant making bodies. Methodologies should help to explore the culture and context of care, with the aim of promoting and sustaining better end of life practice. This may be inclusive of a practice development approach e.g. through action research. Page 23 of 66 20/05/2008

24 6.0: Summary of tools and evidence of best practice Work has already been developed to support health care professionals to deliver End of Life Care. These include the Liverpool Care Pathway, Preferred Place of Care and Gold Standard Framework. It is recognised that any tool is acting merely as a framework for care and does not replace, but rather should enhance, good practice. Figure 4: Best Practice within the Patient Pathway, (DoH, 2005) Patient Pathw ay Review Id entify needs Im p lem e nt Assess need Plan PPC GSF supportive and palliative care LCP deterioration death/bereavem ent Preferred Place of Care (PPC) Gold Standards Fram ew ork (GSF) Liverpool Care Pathw ay (LCP) 6.1: Gold Standard Framework The Gold Standards Framework (GSF) is an organisational framework designed to support the delivery of community palliative care, principally by primary health care teams. It seeks to promote early identification of patients and their carers, regular and systematic assessment of need, effective communication and planned, proactive case management. It was initially developed as a care framework for cancer diagnoses but is now evolving to incorporate non-malignant palliative care. In general patients will enter into the GSF programme in the final 6 months of life, however this is by no means fixed. Approximately 33% of general practices in Page 24 of 66 20/05/2008

25 England use the GSF, and their involvement is subject to ongoing review and analysis by Warwick University. Within Northern Ireland the implementation of this tool into practice has been piece meal and subject to sustainability difficulties. Evidence so far indicates that GSF is successful in effecting positive changes in how care is organised and coordinated by teams. Evidence of improved clinical outcomes is inconclusive at present. Full appraisal in appendix : Preferred Place of Care Plan (PPC) The Preferred Place of Care is an initiative that aims to identify where patients wish to receive their care and ultimately die. The supporting documentation originated in Lancashire and South Cumbria as a result of local figures which highlighted that only 25% of deaths in the region during actually occurred in the patient s own home compared with approximately 50% of terminally ill patients who express a wish to die at home (Townsend et al, 1990; Dunlop et al 1998). Patients who are able to plan their death are more satisfied, less likely to die alone and are more likely to do so in their own homes. (Seale et al 1997) Currently the PPC in England is under review in light of the recently implemented Mental Capacity Act The document is intended to be a patient held record that can follow the patient throughout their trajectory of care into the different care settings. Guidance notes for patient, carer and staff are available explaining how to use the PPC. By placing the patient and carer at the centre of the plan, it is hoped that autonomy and control are fostered at the end of life (Storey et al 2003) While it was originally intended that the PPC could be initiated by community nurses, any member of the specialist palliative care team, or a GP, debate remains about when it should be initiated and in fact who exactly is the most appropriate person to do so. Page 25 of 66 20/05/2008

26 Benefits of the Preferred Place of Care Plan As this is an advance care plan, one of its biggest benefits is that it encourages open communication early in the illness trajectory, thus giving the patient and family time to make informed choices about the care they wish to receive. Patient choices and any changes to them are recorded, leaving it more likely that their wishes can be adhered to. Inappropriate admission to hospital may be prevented if patient wishes are known. Resource implications for services can be determined and used to plan future provision. Education needs of patients, carers and professionals can be identified. Suggested limitations Timing knowing when to initiate the PPC Criteria for inclusion developed for patients with advanced cancer, it is often very difficult to diagnosis dying for non cancer patients. Enhanced communication skills required in order to initiate end of life discussion may not be available, thus this has implications for training and ultimately financial resources. Time and resource implications of further documentation requiring development. Funding and training would be required for implementation and sustainability. The Preferred Place of Care document may be useful in all care settings, not least because of the need to initiate open, sensitive communication earlier in the illness trajectory; however, if unable to offer the complete document, elements could be incorporated into existing assessment forms. A full appraisal of this document may be found in Appendix 6 6.3: Liverpool Integrated Care of the Dying Pathway (LCP) This tool is a multi professional document which incorporates evidence-based practice and appropriate guidelines related to care of the dying. It was initially designed to transfer the hospice model of best practice for dying patients into hospitals but, given its success, adapted versions are now being used in patients homes, care homes, and hospices. The LCP is for use with patients in the last days or hours of life; criteria for diagnosing dying are included. It is equally Page 26 of 66 20/05/2008

27 appropriate for patients with malignant and non-malignant disease. The LCP involves prompting good communication with the patient and family, in preparation for death, anticipatory planning for psychosocial and spiritual needs, symptom control (pain, agitation, nausea and vomiting, and respiratory tract secretions) and care after death. (DoH, 2006) The successful integration of this tool, particularly within the acute setting, has been as the result of funding from Big Lottery and Macmillan Cancer Support, which has enabled the appointment of time limited coordinator posts to promote the implementation and necessary education of staff. Many of these posts have now come to an end, leaving concerns regarding future sustainability. The LCP has been implemented in most hospitals in Northern Ireland. Some hospices have also implemented the LCP, and a community version of the LCP has been developed. Implementation has been accompanied by audit providing evidence of effect. There is no regional strategy for implementation of the community LCP, and to date there has been no recognition of the utilisation of this tool within care homes. There are many challenges in the ongoing implementation and continued resourcing of the LCP. A full report of the scoping, appraisal and evaluation of this tool can be found in Appendix 4. Page 27 of 66 20/05/2008

28 6.4: Challenges to Supporting Best Practice Appraisal of the end of life tools, recognised that they all had limitations. The Preferred Place of Care document is vague on assessing factors related to illness, probably because it is a record held by the patient. The Liverpool Care Pathway does not specifically record the preferences of patients and families. The Gold Standards Framework offers detailed care planning yet overlooks patients' functional status, ethnicity, and caregivers' preferences. Providing balance individually and collectively these tools provide many benefits and the potential of transferability across care settings. Examples of the benefits are: Encouraging open communication Recognition of patient choice Coordinated and high quality care Identification of educational needs for patients, carers and professionals There are other tools and guidelines which support the health care professional, these include for example Breaking Bad News guidelines (DHSSPSNI, 2003) and patient held records. Implementation of any of these tools has always been problematic and sustained use of them has depended on the commitment of the individual practitioners using them. Recurrent resourcing to facilitate the utilisation of these tools should be seen as a priority for end of life care. In scoping the use of these tools a number of recurrent challenges emerged. These include having a committed dedicated champion, having a positive attitude to new ways of working and initiatives, having a stable workforce with relatively low turnover, commitment of key clinical leaders (Consultants, Ward leaders). There is a need to recognise that by merely focusing on a time limited project towards introduction of specific tools does not promise continued commitment to their use when the project is complete, even when a legacy of resources is available. Sustainability beyond the project can be challenged because of an absence of: A local champion Commitment Stable workforce Leadership Training Page 28 of 66 20/05/2008

29 7.0: Conclusion Improving end of life care for all patients is a complex challenge. The task is considerable and requires commitment and collaboration across all care settings, specialities, professions and agencies. Central to all is the continual focus on the need of the individual patient and their family. A common definition and understanding of End of Life Care is needed within society, and in particular, for patients, their families, health care professionals, providers and commissioners of service. This should prompt recognition and timely diagnosis of dying, and facilitate better assessment of need, in terms of immediate service delivery and the commissioning of future services. Actions to enable real choice at end of life should prioritise ways of empowering families through education. Making real choice a reality requires a continuous effort to improve home based models of care, which are responsive, co-ordinated, appropriately intensive, cost effective, safe and sustainable. An ongoing training requirement is a prerequisite to enhancing the capacity of all generalist palliative care providers across all care settings. Specialist palliative care professionals are influential in this lifelong learning. Ultimately, effective change will require the meaningful engagement of a diverse group of practitioners, planners, commissioners, educators, carers and patients. There is a need for a robust mandate, which should infiltrate all other strategies. and establish significant integration, co-ordination, commitment and resource within end of life care. Page 29 of 66 20/05/2008

30 8.0: List of Recommendations Policy An understanding of the terms supportive care, palliative care and end of life care should be promoted, to enhance a coordinated care approach and ensure the provision of good quality end of life care services. (Page 10) Professional and public openness around dying and death should be encouraged. All professionals require enhanced communication skills in order to initiate such discussion, to help people find meaning in their dying and with the aim of promoting better palliative and end of life care. (Page 12) To promote the early recognition of the dying process, the principles of end of life care should be embedded within regionally service frameworks across the range of illnesses and evidenced through the NICE guidance for Supportive and Palliative Care (NICE, 2004). (Page 13) Future service models should acknowledge and support the importance of patient and carer choice regarding the delivery of care. Such models should aid the seamless transfer of patients between services, and promote continuity of care involving generalist and specialist health and social care professionals as well as those from other agencies. (Page 17) Whilst it is understood that current and future Regional Service Frameworks will incorporate standards and quality indicators for palliative and end of life care, it is recommended that over time there should also be a specific Service Framework in Northern Ireland for Palliative and End of Life care (Page 19) Page 30 of 66 20/05/2008

31 Practice Communication is an essential feature of quality health and social care service delivery. There is therefore a need to ensure effective communication of patient information with the individual and with relevant professionals and across care settings. (Page 13) End of life care tools (such as The Liverpool Care Pathway) should be embedded into practice across all care settings and used effectively on the basis of individual need. This will require new investment to support facilitation and promote sustainability through evaluation of the impact of such tools. There should be regional audits of existing guidelines to evaluate end of life care in practice. (Page 18) To support effective commissioning there is a need for a clearly defined service specification for generalist and specialist levels of palliative care provision within; hospitals, hospices (inpatient, day care, community) and hospice at home services, primary and community care, care homes and out of hours services. (Page 20) A robust assessment of need across the region is necessary to ensure appropriate, responsive and well coordinated high quality services are available. It is anticipated that this assessment of need would promote efficiency, equity and would enable the commissioning of effective services. (Page 21) Page 31 of 66 20/05/2008

32 Education & Research End of life care, should become a core element of all pre- registration, post registration and clinical education programmes. Further opportunities for multidisciplinary and multi-professional learning should be developed. Such learning should enable professionals to develop sound knowledge, skills and competencies around palliative and end of life care. These learning opportunities should be accessible and flexible reflecting a wide range of models of delivery to ensure greatest impact. (Page 22) There is an urgent need to strengthen the infrastructure of research and development within supportive, palliative and end of life care. Clinical and academic research should be undertaken through the identification and targeting of funding and grant making bodies. Methodologies should help to explore the culture and context of care, with the aim of promoting and sustaining better end of life practice. This may be inclusive of a practice development approach e.g. through action research. (Page 23) Page 32 of 66 20/05/2008