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The role of the nurse in palliative care settings in a global context

Sheila Payne and colleagues examine the differences and similarities in end-of-life care provided in different countries which, while broadly based on the same models, varies according to resources, cultural attitudes and public health policies
Summary
This article introduces palliative care and palliative care nursing. It goes on to consider models of palliative care delivery and provide a more detailed account of the three elements of palliative care nursing working directly with patients and families, working with other health and social care professionals to network and co-ordinate services, and working at an organisational level to plan, develop and manage service provision in local, regional and national settings. It concludes by detailing the challenges for palliative care nursing and outlines a possible way ahead.
Keywords Culturally sensitive care, palliative care nursing, palliative care services

and to be powerful role models to others trying to improve the provision of palliative care. Nurses face different challenges in resource-poor and resource-rich countries, but promoting high-quality palliative care crosses regional, economic and cultural boundaries (Hunt 2008).

Palliative care
Palliative care is recognised as a global public health concern. Fifty six million people die in the world each year (World Health Organization (WHO) 2002), and 60 per cent of people with a life-threatening illness could benefit from this type of care. Patterns of dying vary. In some countries infants may die after just a few hours or days of life, while increasing numbers of people in industrialised countries die in late old age. The effect of ageing populations in Western countries means that more people experience chronic illnesses, including dementia. In 2007, 115 of the worlds 234 countries (states and allied territories) had established one or more hospice or palliative care service (Wright et al 2008), but only in 35 countries had these become sufficiently well established to become part of national healthcare policies and be integrated with other healthcare service providers. Local development of palliative care services in each country has been shaped by the pattern of disease, healthcare systems, medical technologies, socioeconomic factors, geography, availability of drugs and political and cultural contexts (Davies and Higginson 2004). Palliative care is suitable for people with cancer, human immunodeficiency virus (HIV) and many other life-threatening conditions (Addington-Hall and Higginson 2001) and has been defined by the
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NURSES HAVE been and continue to be important in spearheading, introducing and developing hospice and palliative care services internationally (Payne et al 2008). However, in most countries nurses do not have a professional status equal to that of doctors; they might think that they are not capable of promoting changes and being fully involved in aspects such as assessment and management of pain and advising doctors on appropriate drug treatment, as well as strategy and practice development. There is increasing recognition that change is needed at all levels of the healthcare continuum, from the community through to policy, and that nurses are in an ideal position to effect change in patient care and policy. Empowering nurses and thus helping them to change their own attitudes and practices can enable them to influence patient care
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Box 1 What is palliative care? The World Health Organization (Seplveda et al 2002) defines palliative care as follows: Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Box 2 Terms associated with caring for people facing death Hospice care. Terminal care. Continuing care. Care of the dying. Palliative care. End-of-life care. Supportive care. WHO (Box 1). An increasing emphasis is placed on palliative care being introduced earlier in the illness process, from diagnosis through to death and beyond to bereavement support for families, and not solely during the dying phase. Various terms are used to describe palliative care for people with advanced and terminal disease (Box 2). Philosophy of care Palliative care is a philosophy of care. It can be delivered in a range of settings, including institutions such as hospitals, inpatient hospices and care homes for older people, as well as in peoples own homes. Globally, however, palliative care is commonly provided in peoples homes. For most people, it is generally believed to be best delivered at home because most patients prefer to be nursed at home. In many countries hospice refers to a homebased programme of care for terminally ill patients. The most important thing is that, where possible, palliative care is provided in the environment that the patient wishes in an affordable and culturally appropriate manner. In the UK, the National Council for Hospice and Specialist Palliative Care Services (2002) recognises two types of palliative care: General palliative care, which is provided by the usual professional carers of the patient and family with low to moderate complexity of palliative care need. Specialist palliative care services, which are provided for patients and their families with 22 June 2009 | Volume 8 | Number 5 moderate to high complexity of palliative care need. They are defined in terms of their core service components, their functions and the composition of the multiprofessional teams that are required to deliver them. The philosophy of palliative care has been adapted and applied in a variety of settings. The Australian government has introduced Guidelines for a Palliative Approach in Residential Aged Care (Commonwealth of Australia 2006), which identify three forms of palliative care: A palliative approach: to improve the residents level of comfort and function. Specialist palliative care service provision: to augment a palliative care approach with focused, intermittent, specific input as required. Terminal care: care appropriate for the final days or weeks of life. In Africa, Uganda has embarked on researching the implementation of preferred and affordable health advisers at village level, working with them so that patients in pain can be identified. Hospice Africa Uganda and Mildmay offer training in each district in parallel with making drugs available and affordable. To combat the shortage of health professionals allowed to prescribe morphine, registered palliative care nurse specialists receive training and permission from the government to prescribe morphine (Payne et al 2008). Palliative care is therefore a philosophy of care and a specialist healthcare intervention. It has developed in diverse ways across the globe in response to improving care for terminally ill patients and their families.

Palliative care nurses

Nurses have played an important role in developing and delivering palliative care services (Clark 2000), and have continued to help shape its provision by establishing and developing services and leading educational and research programmes. However, some nurses have not had the opportunity to contribute fully because of the low status of women and/or nurses in their society. The provision of palliative care is important across the continuum of care and in a range of settings. Most palliative care nursing is therefore delivered by general nurses in hospitals and in patients homes. Nurses with specialist knowledge support the provision of palliative care by general nurses. However, in many areas the number of specialist palliative care nurses is small, so they need to concentrate on empowering others. In resource-limited settings, much of the care will not be provided by general nurses but will be given by
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nursing aides and community volunteers, who also need to be trained and supported to provide care. Nurses with additional qualifications and expertise in palliative care are often described as specialist palliative care nurses. They may work in hospitals, in hospices or in the community, both in providing direct care to patients and families and also providing advice to other general health professionals. Many of them work independently, but some are part of multidisciplinary teams. The role of specialist palliative care nursing is varied and complex and includes symptom control and supportive care for patients and families, co-ordination and communication between other services, and offering empathy and respect for the dignity and preferences of those in their care (Skilbeck and Payne 2005). Nurses need to be aware of cultural diversity and the social implications of death and bereavement. Specialist palliative care nurses, however, are not available in all countries, and in some nations palliative care is still a relatively new specialty with neither specialist nurses nor a recognised specialist qualification. the poor quality of care and high use of invasive treatments right up to the end of life (Davies and Higginson 2004). Hospital-based specialist palliative care support teams usually involve nurses and other professionals in providing advice to other health professionals and are predominantly available in Western Europe and North America. Working in an advisory capacity brings with it particular tensions in the hospital (Box 3). In most resource-limited settings, specialist palliative care services are not available or not recognised and care will be given in general hospitals. Specialist palliative care advisers may be available in some hospitals, but this is still the exception rather than the norm. Efforts are being made to get specialist nurses trained and recognised. Day care, outpatient and drop-in clinics Day care services, outpatient and drop-in clinics in hospitals, hospices and community services provide palliative care. Clinics may be taken to people in the community, and the models vary across the world, depending on needs (Wright 2003). Where possible, services try to keep patients, especially children, in their own environment. Hospices and specialist units Palliative care in specialist units such as inpatient hospices takes place in a team environment. Palliative care is focused on caring for patients and their families. Nurses work alongside doctors, social workers, chaplains, therapists and voluntary staff to support family members with their concerns. Box 3 Challenges of delivering specialist palliative care in hospitals Non-acceptance of palliative care as a specialty with specialist knowledge. Divergent opinions between nurses and doctors about who has palliative care needs. Lack of palliative care knowledge and appropriately skilled and trained palliative care specialists. Power sharing between professional disciplines. Poor communication. Acceptance of advice and this being acted on, especially for nurses. Access to free/cheap drugs. Difficulties with opioid prescribing. Role ambiguity for nurses. Lack of resources, human and financial. (Payne et al 2008)
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Models of delivery
The philosophy of palliative care can be applied across a range of situations, contexts and illnesses. It should take account of the particular religious and cultural beliefs of the person and family receiving care. One model of care does not meet every patients needs. The principles of palliative care are the guiding factor; these should be adapted to the needs of those receiving care, taking into account the relevant ethical, legal and cultural factors. Examples of different models for the delivery of palliative care include home, hospitals, day care, outpatient and drop-in clinics, hospices and specialist units. Home Most people with a life-threatening illness remain at home for most of their illness, and their families may need help and support in caring for them. Where palliative care is available, it is most commonly provided by community nurses visiting people in their homes, although in resource-limited settings community volunteers often provide most of the care. In such settings, the provision of holistic care may involve nurses helping to provide food as well as additional money, equipment and other resources. Different models of nursing in the community are seen in different places and will depend on the resources available. Hospitals In many developed countries, most people die in hospitals; however, there is concern about
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Box 4 Roles and competences of a specialist palliative care nurse Roles Palliative care expert Communicator Collaborator Advocate Evidence-based practitioner Professional nurse Educator Competences Knowledge and application of knowledge. Skills with patients, families and multidisciplinary team members. Working with multidisciplinary team members, family carers and other professionals. For patient and family and for palliative care services. Participating in continuing professional development, teacher and researcher. Practising ethically and honestly and delivering best practice to all. Helping to educate patients about self-care; educating families and professionals. into care of older people (Seymour et al 2005). In some areas where HIV is endemic, many older people will be caring for orphans or may be cared for by children, which adds a new dimension to the provision of palliative care. Children: in many parts of the world, such as in the UK and the United States, the number of children requiring palliative care is small, which poses a challenge to providing specialist services for such children near to or in their homes, by experienced paediatric nurses. In other parts of the world, such as in Africa and India, where HIV is endemic, the number of children requiring palliative care is vast, which poses the opposite challenge as to how to provide care for them all. People with special needs, such as those with learning difficulties and/or mental health problems, prisoners, refugees and internally displaced people. People from minority ethnic groups (Koffman and Camps 2008).

Ethical and cultural issues

Ethical frameworks for the delivery of palliative care nursing vary in the context of each country, but the following principles can be used as a guide: Respect for the patients and familys wishes and choices. Advance care planning. Integrity and selflessness to care and not to see this care as a nuisance to the health professionals financial status. Open communication, delivered at the right pace and including content relevant to each patients and familys wishes and capacity. Agreed goals of care, negotiated with the multidisciplinary team, patient and family. Regular planned assessment and review of goals and preferences. Palliative care in the UK has been predominantly developed for adults with cancer, but it is also appropriate for people with other life-threatening illnesses and has been applied successfully in such settings. However, there are many challenges in the delivery of palliative care, including caring for: People who have limited or no resources and are economically poor: for many nurses in resource-limited settings this applies to most patients, placing a significant strain on the limited resources available and affecting the sustainability of programmes. People who live in rural areas: this is a particular problem in some resource-limited settings where healthcare professionals are lacking, for example, in rural areas and where access can be a problem. Older people: these patients are often cared for in situations where palliative care is not routinely available, so palliative care needs to be integrated 24 June 2009 | Volume 8 | Number 5

Palliative care nursing

Nurses are a core component of the multidisciplinary team in palliative care. The nursing role in working with people with advanced life-threatening illnesses varies because of the complexity of each persons illness and its effects. Studies show improvement in the quality of life and the emotional and cognitive functioning in patients who are cared for by palliative care nurse specialists in the UK (Corner etal 2002, Corner 2003). Palliative care nursing skills and roles usually include three elements, outlined below and summarised in Box 4. Working with patients and families The development of trust and rapport is essential in creating a supportive relationship between nurse, patient and carer. Nurses need to respect and value patients. They need to have sufficient time to be with dying patients and to create an environment conducive to a peaceful and dignified death. Eliciting the wishes of patients about their care, such as the use of advance directives in some countries, is important in achieving this. Assessing the needs of people with a life-threatening illness; planning, delivering and evaluating the outcomes of nursing care; and recognising when to refer to others with an additional or different expertise are all essential aspects of the role. Assistance with a persons functional ability and the status of their body are fundamentals of nursing care, involving cleansing and dressing
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the person who is ill and assisting them with their daily living. In the home environment, family members often provide physical care and may need support and advice. Specialist and generalist nurses are involved in assessing the effects of any drug treatment on patients symptoms and therefore need to know about the medications being used and have the skills to administer them. Specialist nurses who work in a consultative capacity in hospitals and the community offer advice about what treatment to prescribe. Achieving adequate symptom control is difficult in countries where drugs such as morphine may be too expensive, unavailable or rarely prescribed (Wright 2003). The use of appropriate equipment to administer drugs, relieve pressure, facilitate rehabilitation, maintain dignity and aid comfort is also an aspect of nursing care. Nurses have a central role in providing clear and accessible information in various formats (verbal, written, electronic) in a timely and sensitive way. They should have good communication skills to help patients express their concerns, preferences and choices. Nurses have an important role in providing support, from diagnosis to death and into bereavement. A large proportion of the palliative care nurse specialists role is providing emotional support to patients and their families, including listening to concerns, facilitating, coping and assessing for bereavement risk (Skilbeck and Payne 2003). Cultural differences will shape the nature of existential distress and the need for religious and spiritual support. Working with health and social care professionals Nurses play a key role in co-ordinating services and liaising with doctors, health and social care staff, and care provider organisations when available, on behalf of the patient and family. Initiating the application for financial help is part of nurses and social workers roles. Lack of co-ordination between services can lead to increased fragmentation of care and poor communication for the person who is ill. In the UK, nurses traditionally work as part of a team and negotiate their roles, skills and knowledge in their immediate team and in the wider healthcare team to meet the needs of the patient. However, in many resource-limited settings the team may be limited and nurses will find themselves working mainly with community volunteers and lay carers. Specialist nurses can improve care by acting as advisers and consultants to others, either by doing joint clinical assessments or via telephone links.
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Working with managers, policymakers and planners Nurses often have to work with limited resources and in healthcare contexts where they have to deal with competing priorities. They need to be able to set goals that are achievable and to advocate for provision of palliative care. They may use audit, clinical governance and evaluation to improve care. In many contexts, palliative care is a nurse-led service requiring strong leadership skills and the ability to organise and manage services or to integrate palliative care into already existing healthcare structures. Nurses need to be involved in all levels of local, regional and national healthcare planning in palliative care to ensure that such care is regarded as more than a medical service. Nurse managers need to create effective and efficient teams by recognising group dynamics and building supportive relationships. This may involve opportunities for reflecting on difficult cases, without blaming individuals, but looking for learning and quality improvement facilitated by a leader from outside the team. Helping staff to set personal and professional boundaries and acknowledge a collective sense of loss are important at times. In the US and the UK, the development of healthcare protocols known as care pathways has been advocated as a means of improving standards during the last days of life in hospitals (Ellershaw and Ward 2003) and in primary care (Thomas 2003). They offer a structured approach to delivery and evaluation of palliative care and potentially to cost containment.

Conclusion
Palliative care is a key topic for all nurses and for all societies. Since death has a universal incidence, the incidence, de facto, makes it a public health concern. Dying is also associated with significant suffering, much of which is preventable (Foley 2003). Seeing palliative care in this way is most common in North America, Australia and the UK, but there is also evidence of a concern in other parts of the world to detail the huge variety of service provision, resources and models of care. Facilitating dialogue about how best to mobilise scarce resources in pursuit of better end-of-life care across the globe is essential (Clark and Wright 2003). Such activity challenges us to look critically at the transferability of different models of palliative care nursing. Most obviously, the possibilities for

Nurses play a key role in co-ordinating care, liaising with doctors, health and social care staff, and providers, on behalf of the patient
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palliative care need to be understood in relation to the demography, epidemiology, politics, policies, economics and cultures of particular societies. One size certainly does not fit all. The changing patterns of disease and dying in the modern world are likely to present new challenges not only to the technical aspects of nursing care but also to the organisational aspects of provision. Formerly acute diseases are becoming chronic, and this is likely to be combined with people, especially older people, experiencing a greater number of comorbidities. The theory and practice of palliative nursing will therefore be challenged by the management of highly complex symptoms of multiple diseases. This may require a different type of workforce, which will have far-reaching implications for nurse educators (Payne et al 2008). In England, the Department of Health (DH) has recognised the need to meet the needs of dying people with any condition and in any care setting by launching last year the first End of Life Care Strategy (DH 2008), which aims to provide people with more choice about where they would like to be cared for. This will require sizeable investment in education, practice development and high-quality research. Nurses will need to play a prominent role in facilitating advance care planning and discussing care options with patients and families. Moreover, in this era of globalisation, the challenge will be to ensure collaboration and learning not only within but also across national boundaries and disciplines. From a public health perspective, it is no longer acceptable that people dying of diseases other than cancer are discriminated against. However, there is References
Addington-Hall J, Higginson I (Eds) (2001) Palliative Care for Non-cancer Patients. Oxford University Press, Oxford. Clark D (2000) Palliative care history: a ritual process. European Journal of Palliative Care . 7, 2, 50-55. Clark D, Wright M (2003) Transitions in End of Life Care: Hospice and Related Developments in Eastern Europe and Central Asia. Open University Press, Buckingham. Commonwealth of Australia (2006) Guidelines for a Palliative Approach in Residential Aged Care . www.nhmrc.gov.au/publications/ synopses/_files/pc29.pdf (Last accessed: May 26 2009.) Corner J (2003) Nursing management in palliative care. European Journal of Oncology Nursing. 7, 2, 83-90. Corner J, Clark D, Normand C (2002) Evaluating the work of clinical nurse specialists in palliative care. Palliative Medicine. 16, 4, 275-277. Davies E, Higginson I (Eds) (2004) The Solid Facts: Palliative Care . World Health Organization, Copenhagen. Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life . The Stationery Office, London. Ellershaw J, Ward C (2003) Care of the dying patient: the last hours or days of life. British Medical Journal. 326, 7379, 30-34. Foley K (2003) How much palliative care do we need? European Journal of Palliative Care . Suppl. 10, 2, 5-7. http://www.eapcnet.org/ download/forCongresses/Foley_K.pdf (Last accessed: May 28 2009.) Hunt J (2008) Palliative care in resource poor countries. In Payne S, Seymour J, Ingleton C (Eds) Palliative Care Nursing: Principles and Evidence for Practice . Second edition. Open University Press, Maidenhead. Koffman J, Camps M (2008) No way in: including the excluded at the end of life. In Payne S, Seymour J, Ingleton C (Eds) Palliative Care Nursing: Principles and Evidence for Practice . Second edition. Open University Press, Maidenhead. National Council for Hospice and Specialist Palliative Care Services (2002) Definitions of Supportive and Palliative Care . Briefing Number 11. NCPC, London. Payne S (2007) Public health and palliative care. Progress in Palliative Care . 15, 3, 101-102. Payne S, Seymour J, Ingleton C (Eds) (2008) Palliative Care Nursing: Principles and Evidence for Practice . Second edition. Open University Press, Maidenhead. Seplveda C, Marlin A, Yoshida T et al (2002) Palliative care: the World Health Organizations global perspective. Journal of Pain and Symptom Management. 24, 2, 91-96. Seymour J, Witherspoon R, Gott M et al (2005) End-of-Life Care: Promoting Comfort, Choice and Well-being for Older People . Policy Press, Bristol. Skilbeck J, Payne S (2003) Emotional support and the role of clinical nurse specialists in palliative care. Journal of Advanced Nursing. 43, 5, 521-530. Skilbeck J, Payne S (2005) End of life care: a discursive analysis of specialist palliative care nursing. Journal of Advanced Nursing. 51, 4, 325-334. Thomas K (2003) The Gold Standards Framework in community palliative care. European Journal of Palliative Care . 10, 3, 113-115. World Health Organization (2002) World Health Report 2002. Reducing Risks, Promoting Healthy Life . WHO, Geneva. www.who.int/ entity/whr/2002/en/whr02_en.pdf (Last accessed: May 26 2009.) Wright M (2003) Models of Hospice and Palliative Care in Resource Poor Countries: Issues and Opportunities. Hospice Information, London. Wright M, Wood J, Lynch T et al (2008) Mapping levels of palliative care development: a global view. Journal of Pain and Symptom Management. 35, 5, 469-485.

Implications for practice

The science of palliative care nursing is going to be challenged by the management of highly complex symptomology of multiple diseases. Palliative care belongs to everyone and, arguably, is a basic human right for all those in need. Nurses have an important role in ensuring greater equity of access to palliative care, but they have to be prepared to be more politically active than they have been in the past. Whatever the configuration of services, people will die and nurses are likely to have a central role in caring for them. To ensure effective care, progress over the next decade will require collaboration internationally and a close commitment by nursing education, research and practice. Further reading Payne S, Seymour J, Ingleton C (Eds) (2008) Palliative Care Nursing: Principles and Evidence for Practice. Second edition. Open University Press, Maidenhead. still a danger that disease category, culture, ethnicity and geographical location will remain the key drivers determining access, rather than the burden of illness (Payne 2007). Nurses could have an important role in ensuring greater equity of access to palliative care, but they will have to be more politically and socially assertive than hitherto. Whatever the configuration of services or diversity of diseases, people will still die and nurses will have a central role in caring for them at this stage of their lives.

This article has been subject to double-blind review. For author guidelines visit the Cancer Nursing Practice home page at www.cancernursingpractice. co.uk For related articles visit our online archive and search using the keywords Sheila Payne is Help the Hospices chair in hospice studies, division of health research, Lancaster University Christine Ingleton is reader in palliative care, Centre for Health and Social Care Studies, University of Sheffield Anita Sargeant is lecturer in nursing, School of Health Studies, University of Bradford Jane Seymour is Sue Ryder Care professor of palliative and end-of-life studies, School of Nursing, University of Nottingham

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