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Volunteers have a long history of supporting the development and delivery of hospice and palliative care in most countries throughout the world. As hospice and palliative care services anticipate significant increasing and changing demands, it is recognised that volunteers have a vital role to play in supporting the future delivery of services. However, as society changes so too does volunteering. This multi-author text explores the complex phenomenon of hospice and palliative care volunteering from an international perspective and considers the influence on volunteering of different cultures and constructs. The book also explores the likely impact of changes in hospice and palliative care on volunteers and considers how and why volunteering itself is changing and the subsequent implications for managers, organizations, and policy makers. This book does not attempt to offer solutions to the many challenges ahead, but rather poses questions that may help to reflect on new possibilities and opportunities.

Cicely Saunders is universally acclaimed as a pioneer of modern hospice care. Trained initially in nursing and social work, she qualified in medicine in 1958 and subsequently dedicated the whole of her professional life to improving the care of the dying and bereaved people. Founding St Christopher's Hospice in London in 1967, she encouraged a radical new approach to end of life care combining attention to physical, social, emotional and spiritual problems, captured in her concept of ‘total pain’. Her ideas about clinical care, education and research have been hugely influential, leading to numerous prizes and awards in recognition of her humanitarian achievements. This book includes a selection of Cicely Saunders' most important writings throughout a period of over forty years. Full articles, chapters, editorials, reviews, and commentaries include important clinical themes relating to the care of dying people such as pain and symptom management, issues of communication and truth telling, and the needs of particular patient groups, such as those with cancer and other diseases. The book includes pieces that reflect on the wider development of the palliative care field and on policy and organisational issues. Some of the papers take up the theme of spiritual care at the end of life, as well as the question of euthanasia, raising in turn issues of a wider theological and philosophical nature. The book is a testimony to the personal contribution of Cicely Saunders and the influence she has had upon the modern field of palliative and end of life care.

Cicely Saunders is universally acclaimed as a pioneer of modern hospice care. Trained initially in nursing and social work, she qualified in medicine in 1958 and subsequently dedicated the whole of her professional life to improving the care of dying and bereaved people. Founding St Christopher's Hospice in London in 1967, she encouraged a radical new approach to end-of-life care, combining attention to physical, social, emotional, and spiritual problems, brilliantly captured in her concept of ‘total pain’. Saunders' ideas about clinical care, education, and research have been hugely influential, leading to numerous prizes and awards in recognition of her humanitarian achievements. This book presents a selection of her vast correspondence, together with the author's commentary. The letters of Cicely Saunders tell a remarkable story of vision, determination, and creativity. They should be read by anyone interested in how we die in the modern world.

Despite the fact that most palliative care educators are involved in teaching, there is little literature devoted to education specifically within palliative care. This book bridges that gap, giving a wide-ranging, global view of palliative care education. It offers theoretical and practical insights, along with specific suggestions for developing knowledge and skills for teaching. It also contains extensive accounts of important contextual matters which influence the range and quality of palliative care education, including: interprofessional learning; continuing professional development; evaluation; and educational leadership. The development of palliative care as a clinical speciality is increasingly conducted at an international level, and a special feature of this book is the inclusion of chapters reviewing palliative care education in each continent. This encourages the sharing of knowledge across diverse healthcare systems and cultures. There is also an acknowledgement of the multi-professional team involved in palliative care, as education and training are looked at from the perspectives of doctors, nurses, and allied health professionals. The book is split into three distinct parts: Part 1 sets the scene for existing palliative care education, both in the UK and internationally. Part 2 focuses on the theory underpinning each aspect of teaching, learning and assessment, and then examines the practicalities of delivering these in the clinical setting. Part 3 explores ways of building and nurturing a culture of learning in palliative care, whether as an individual or as an organization.

A book for nurses, doctors and all who provide end of life care, this volume guides readers through the ethical complexities of such care, including current policy initiatives, and encourages debate and discussion on their controversial aspects. Dived into two parts, the book introduces and explains clinical decision making-processes about which there is broad consensus, in line with guidance documents issued by the WHO, BMA, GMC, and similar bodies. The changing political and social context where ‘patient choice’ has become a central idea, and the broadened scope of patients' best interests, have added to the complexity of decision-making in end of life care. The authors discuss issues widely encountered by GPs, nurses, and hospital clinicians. These include patient choice, consent, life-prolonging treatment, and symptom relief including sedation. Part two explores the more controversial current end of life care initiatives, such as advance care planning, preferred place of care and death, euthanasia and assisted suicide, extended ideas of ‘best interests’, and the view that there are therapeutic duties to the relatives. Throughout their discussion the authors draw attention to loose ends and contradictions in some of the proposals. Examining the current policy of consumerist choice, they reject its place in the health service, proposing a realistic, fair, humane and widely adoptable system of end of life care. An appendix on ethical theories and terms is available online.

The past 30 years has seen a huge expansion in the provision of palliative care services. Because palliative medicine is a multidisciplinary specialty – combining the expertise of oncologists, anaesthetists, nurses, and many other therapeutic groups – the effectiveness of such treatment can be very difficult to measure. Additionally, research involving terminally ill patients and their carers can also present a number of practical and ethical problems. In spite of this, current health policy demands evidence of the effectiveness and value for money of health service interventions at all levels of complexity, including the service level. This book provides an introduction to the theory and practice of the evaluation of palliative care services. It examines the methodological issues involved in the evaluation of palliative care and outlines a practical approach that is readily applicable to many other health care interventions. In particular, research issues involving terminally ill patients and their carers are analysed and discussed, and approaches suggested for future work.

Support for the family is a key component of palliative care practice and philosophy, with both patient and family construed as the ‘unit of care’. However, there is not always formal acknowledgement of the importance of the family carer role, or that of friends, neighbours, and other non-professional, informal carers. Consequently, health and social care professionals find carer support work particularly challenging. Symptom management, personal care, and administering medications are just some of the tasks taken on by this group of non-professionals, and the impact of this role can have negative emotional, physical, financial and social implications on the care-giver. Furthermore, family carers consistently report unmet needs, and there has been a lack of intervention studies aimed at improving carer support. This book provides an evidence-based, practical guide to enable health and social care professionals to assess and respond to family carer needs. It also explores the wider sociological, policy, and research issues related to family carers and palliative care.

This book provides clinicians with practical and evidence-based guidelines to achieve effective, patient-centred communication in the areas of cancer and palliative care. It breaks communication down into key modules that cover the life-cycle of cancer care and includes coverage of diagnosis and treatment including clinical trials, empathic support in response to distress, transition to survivorship or palliative therapies, discussion of prognosis, conduct of family meetings, and care of the dying. Complementary training of cancer patients in their communication with the doctor completes the interactive dyad. The art of teaching, impact of gender and power in the consultation and the ethical context are carefully considered. Special communication challenges include discussion of genetic risk, rehabilitative and salvage surgery, promotion of treatment adherence, unanticipated adverse outcomes, intercultural issues, and fertility and sexuality. The value of decision aides, question prompt lists, audio-recording of consultations and use of the internet is illustrated. Theoretical models are examined from the medical school to the highly specialized practice, facilitation training and actor training are made explicit, and international approaches to communication skills training are compared and contrasted. Finally, research tools that assist in coding cancer consultations, evaluating training courses, and employing mixed methods in studies aid the reader in providing clear and sensitive communication when handling challenging situations whilst treating cancer sufferers and palliative care patients.

Eight hundred million people live in Africa, a continent which covers 22 percent of the world's surface and encompasses some fifty countries. Conflict, poverty, endemic diseases, and lack of clean water pose serious challenges for the population, made worse by a rampaging AIDS pandemic. Huge loss of life has impacted dramatically on both health systems and social and family structures. As the attention of the world focused increasingly on Africa, the International Observatory on End of Life Care was commissioned to conduct a timely review of hospice and palliative care development across the continent. The Observatory undertook this review using an approach specially designed for resource-poor settings. Information was collected against an agreed template to allow comparisons between countries and regions. As a result, an insight is given into the challenges, opportunities and successes faced by hospice and palliative care workers, country by country, throughout the twenty-six countries in Africa where a palliative care initiative is underway. Strategies and models of care are explored, and the development of palliative care is viewed from various standpoints including ethnographic, historical, ethnic, demographic and epidemiological perspectives. This is the first book to focus exclusively on palliative care and hospice development in Africa.

Palliative care is rapidly evolving as a multidimensional therapeutic model devoted to improving the quality of life of all patients with life-threatening illness. Symptom control, management of psychosocial and spiritual concerns, decision making consistent with values and goals, and care of the imminently dying that is appropriate and sensitive to the unique needs of the individual and the family — these are among the critical issues addressed through palliative care. As this discipline has evolved, the need for research in all these areas has become widely acknowledged. This book describes both the progress that has already been made in the investigation of these issues and the methodologic elements that must be addressed in future studies. The perspective is broad and the overriding goal is to inform about the state of the art in these rapidly evolving areas of research.

This is an important book on a very important and increasingly relevant subject for all who are involved in any way with palliative and End of Life Care. It is about the realities, messiness, uncertainties, contradictions, paradoxes and ambivalence that are part and parcel of living through advanced illness, dying and bereavement but also about what helps and heals. It is about responding to feelings, hopes, fears and stresses associated with major illness, often experienced by patients and their carers, both family and professional. The content is largely drawn from research and clinical experience as a psychotherapist and pastoral carer in bereavement counselling and palliative care. It is not about technical medical procedures. Its value lies in the highlighting of the non-technical role and presence of caregivers. The aim is to help carers in training both professional and volunteer or who are already in practice, to understand better the attitudes and behaviour of their patients or clients. It could also be of help to teachers and trainers in the field of hospice, palliative and bereavement care and to patients and their families and friends as they try to come to terms with their own situations and how they can cope better with them. The book reviews a range of responses to illness and loss, the challenges posed to countless patients, relatives and carers and the support both personal and organisational. It is written in an accessible style using many stories shared with the authors. This publication offers an inspiring way for people in contemporary society to review death as part of life. (263 words)

Improvements in health care in the 21st century mean people are living longer, but with the paradox that chronic illness is increasingly prevalent. Dementia, a term used to describe various different brain disorders that involve a loss of brain function which is usually progressive and eventually severe, is a condition associated with an ageing population and is becoming increasingly common. Worldwide, there are approximately 24 million people with dementia, expected to rise to 81 million by 2040. Inevitably, people living with dementia will die, but their needs at the end of life are not well known. This book describes what might be achieved if the values and best practice of both dementia care and palliative care are brought together, to achieve quality end-of-life care for this specific group of patients. It explores what is known about the experience of dying with dementia, using a narrative approach, and develops a model that draws together a ‘person-centred’ approach to care. The book examines the possibilities and the challenges faced when trying to improve quality of life for people with dementia, and presents examples of good practice from across the world.

There is a growing conflict in medicine between the research imperative, with its implicit goal of overcoming death itself, and the re-emergent clinical imperative to treat death as a part of life and to make the process of dying as tolerable as possible. Central to this conflict is the rise of scientific medicine and the decline of religious and associated discourses. Many Anglo Saxon countries are marked by a moral and religious pluralism that breeds controversy over bioethical issues such as euthanasia. Some scholars argue that modern medicine has put the cure of bodies before the care of persons. Some scholars attribute this to a metaphysical heritage of dualism and reductionism. This heritage has become problematic in the modern age, where waning belief in a divine order leaves the individual self as the bearer of meaning. At the same time, knowledge about nature and society has been increasing at such an accelerated pace that it has become difficult to develop a unified secular worldview. Chapters One and Two address these larger issues. Chapter Three focuses on medicine's approach to cancer as an example of the strengths and weaknesses of the research imperative. Chapter Four looks at the diffusion of the theory and practice of palliative care throughout the Anglo Saxon world. The fifth chapter discusses the development of effective pain control. The sixth chapter addresses the changing meaning of euthanasia in Western history in the past century as it has transitioned from a philosophical position to a widely debated policy proposal.

The use of narrative methods has a long history in palliative care, pioneered by Dame Cicely Saunders, founder of the modern hospice movement. This book provides a multidisciplinary examination of work with narrative and stories in contemporary health and social care, with a focus on the care of people who are ill and dying. It animates the academic literature with ‘real-world’ examples from international contributors, including palliative care service users and those working in the social and human sciences, medicine, theology, and the creative arts. The book addresses and clarifies core issues: What is a narrative? What is a story? What are some of the main methods and models that can be used and for what purposes? What practical and ethical dilemmas can the methods entail in work with illness, death, and dying? As well as highlighting the power of stories to create new possibilities, the book also acknowledges the conceptual, methodological, and ethnical problems and challenges inherent in narrative work. As the hospice and palliative care movement evolves to meet the challenges of 21st century health care, this book highlights how narratives and stories can be attended to in ways that are productive, ethical, and caring.

Amyotrophic lateral sclerosis (or motor neurone disease) is a rare disease but one that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore be integral to the clinical approach to the disease. This book reflects the wide scope of this care; it must cover not just the terminal phase, but support the patient and their family from the onset of the disease. Both the multidisciplinary palliative care team and the neurology team are essential in providing a high standard of care and allowing quality of life (both patient and carer) to be maintained. Clear guidelines are provided to address care throughout the disease process. Control of symptoms is covered alongside the psychosocial care of patients and their families, culminating in discussion of bereavement. The experience of patients and families is considered and case studies are provided to show the practical application of the theoretical knowledge. Different models of care are explored, and this second edition of the text utilises the increase in both the evidence-base and available literature on the subject. Additional chapters on nursing, spiritual care, decision making, and ethical issues surrounding end of life care are included in this edition.

Participatory research is a relatively new method of researching practice especially within palliative care. It differs from other methodologies in that there is an expectation of action within the research process. The values that underpin participatory research are collaboration, empowerment, and reflection. In the current climate of collaboration and working with people in healthcare, participatory research methods are gaining increasing interest when there is a desire to bring about change. Organisational change is becoming an important focus as we look at ways of not only reducing costs but at the same time improving quality of care. While palliative care puts the patient and family at the centre, this book discusses a new research methodology that puts practitioners at the heart of the research process as collaborators who work together with researchers to resolve problems in practice. Divided into three sections, it provides theoretical groundings of action research, a greater focus on exemplars from studies within palliative care, and discusses prominent issues when using such a methodology. All three sections are illustrated by an action research study undertaken by the author within a palliative care setting.

Patient participation and user involvement are central to current thinking about the effective delivery of desired healthcare outcomes. Working with the person who lies behind every patient is core to palliative care. A voice can only become significant when it is listened to and acted upon. With palliative care increasingly addressing the needs of people with a variety of conditions in a range of settings, as well as with advances in research, technology, and information, the challenge to be ‘a voice for the voiceless’ is greater than ever. This book addresses key aspects in the provision of patient-centered palliative care and tracks significant developments in user involvement. It sets the philosophy within the cultural, social, and political context of modern healthcare, particularly addressing issues of quality, standards, education, and bereavement. A key component in the delivery of high-quality palliative care is the multi-professional team. Following a discussion of teamwork, five core professions present a critical analysis of their working practices. The book concludes with a commentary from a palliative care user and a bereaved carer. It is often somewhat glibly asserted that the patient is, or should be, at the centre of care. There have been few attempts to examine how to keep him or her there without professional needs and protocols crowding him or her out. This book asks how we listen and why we listen, and focuses on the challenges of how professionals can keep the needs of the patient central in clinical care.

The idea of a philosophy of palliative care emerged with Cicely Saunders' vision for ‘a good death’, and was developed further with the World Health Organization (WHO) definition of palliative care. It is now being applied not only to cancer patients, but to all patients in end-of-life situations. As this palliative care approach advances, it is important to pause and comment on its effectiveness. It is a philosophy of patient care, and is therefore open to critique and evaluation. Using the Oxford Textbook of Palliative Medicine, 3rd edition as their basic reference, the authors present their argument that the palliative care approach has become too busy and over-professionalised, and that it therefore has significant weaknesses. They examine the framework of the specialty – quality of life, autonomy, dignity, patient-centredness, and the priority assigned to relatives in the remit of care – and the moral problems associated with implementing such a philosophy. The resource implications of various healthcare policies are also discussed in relation to the WHO definition. Whilst the authors defend the achievements of palliative care and those who work in the profession, they present suggestions for an alternative philosophy that prompts many ethical and philosophical questions about the future of palliative care.

This book addresses key questions about the need for palliative care, the current provision of services, and the evidence for the effectiveness of a range of alternative models of organisation in palliative care. A broad approach is taken to include the needs of both cancer patients and patients with other terminal diseases, and the relationship between palliative care and other aspects of health care services. The book is based on a comprehensive and detailed review of the international scientific literature on evaluation of palliative care, providing an essential evidence base for policy decisions.

Caring for patients with a terminal illness and their families requires the skills of many professionals working together as a team. It is often the psychosocial issues surrounding patients and families that cause professionals even greater difficulty than the physical symptoms. The issues of psychosocial assessment, treatment, care, and support of palliative care patients differs from the care of patients with early, treatable cancer — time is short and the emphasis different both from a patient and carer perspective. This second edition examines current practice and provision of psychosocial support as applied to palliative care patients. It is a practical text, reviewing the current literature and evidence in order to demonstrate good, and better, practice in psychosocial care. The text covers a number of areas including the nature of services required to provide effective psychosocial care; cultural issues of psychosocial care and adaptation; the importance of communication, including patients with communication difficulties; and socio-economic issues affecting the patient with advanced metastatic disease. Specific disorders such as anxiety and depression are included, as is the integration of service provision. The book also explores the evidence of specific psychotherapeutic interventions and includes guidelines on techniques that can be used in clinical practice. Complementary therapies are widely sought by patients and families and the evidence base is slowly growing — a review of such therapies including herbal and homeopathic medicines is included. Whilst spiritual support and staff support are an integral part of all aspects of psychosocial care, and are incorporated throughout, these areas are also discussed in-depth in individual chapters.