Palliative Care

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.

As the practice of pediatric oncology continues to advance and prognoses continue to improve, the course of treatment for children with poor prognoses becomes more biologically aggressive, more stressful, and more uncertain. Even for children who cannot be cured, new treatments have prolonged the survival of those with active disease and, consequently, medical interventions have complicated the dying process. For those who are cured, there are the lingering uncertainties of having undergone medical regimens whose adverse late effects are not yet fully understood. Consequently the field of pediatric oncology now encompasses more than strictly medical concerns. The conditions of treatment, survival, and dying have become the concerns of all health-care practitioners, including psychiatrists. This volume addresses a range of psychological issues—coping with pediatric cancer, pain and symptom management, medication compliance, sibling and family relations, care of the dying child, among others—pertaining to the practice of pediatric oncology. Each topic encompasses a substantial body of research that has theoretical and applied significance. Each chapter contextually defines the research area, discusses its theoretical and methodological concerns, critically reviews and integrates research findings in the area, discusses unresolved research issues, and suggests future research. The topics included are currently supported by sufficient empirical research to allow useful generalization of findings in the clinical setting.

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.

Pruritus is a prevalent symptom in many skin conditions. However, much less is known about pruritus unassociated with primary skin disease. This latter problem is of major relevance to most medical specialties, notably palliative care, haematology, oncology, internal medicine, hepatology, nephrology, anaesthesiology, immunology, and psychiatry. Specialists in these non-dermatological disciplines each see a few patients with severe pruritus and, therefore have only limited possibilities to learn from their personal experience. In response to the need for information on pruritus in non-dermatological disciplines, this book aims to build a bridge of relevant knowledge and evidence between the various non-dermatological specialties. Pruritus can cause considerable discomfort in patients with cancer, patients receiving treatment for cancer, and patients with non-malignant terminal illnesses. Some knowledge about the pathophysiology of certain types of pruritus exists in different clinical specialties. This book brings this information together. An international group of contributors cover the neurophysiology and clinical assessment of pruritus, the measurement of scratching activity as well as opioid-induced pruritus, pruritus in haematological disorders, neuropathic pruritus and psychogenic pruritus, and the treatment of pruritus in these different clinical settings.

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.

Worldwide, more than 50 million people die each year and it is estimated on the basis of the conditions leading to death that up to 60% of them could benefit from some form of palliative care. It is a public health challenge to ensure that these people can access good palliative or end-of-life care. Pursuing good population health essentially also implies striving for a ‘good enough death’ and a good quality of care at the end of life. Safeguarding a good quality of the end of life for patient populations for whom it is appropriate requires a public health approach. In most developed countries ageing populations that increasingly die from chronic diseases after a prolonged — often degenerative — dying trajectory make up the public health challenges for palliative care. The very large baby boom generation will soon reach old age and can be expected to pose strong demands regarding the circumstances and care at their end of life. Only by applying a public health approach to palliative care (instead of individual patient perspectives), can societies successfully help to organize and plan end-of-life care in accordance with these aspirations. This book presents a synthesis and overview of relevant research and empirical data on the end of life that can bear a basis for a more systematic ‘public health of the end of life’. The book focuses on population health, rather than clinical interventions or other aspects of individual health, and discusses studies using different methodologies (not only epidemiological research). The focus is on the quality of the end-of-life of populations, in particular from social sciences, environmental sciences, and humanities perspectives.

Listening carefully to patients at the end of life is at the heart of good palliative care and this book provides a means of recognizing and talking about spiritual needs even when religious language is not used. The author refers to this as a ‘language of spirit’. The book is based on interviews with patients who are dying and the language that they use to describe their experiences. It deals with death, dying, the experiences of patients, and the relief of spiritual pain by looking closely at patient stories, drawings, and behaviour. The book explains why it is often easier to recognize than to explain spiritual issues. Part One explores the psychological, spiritual, and theological interpretations of human experience. A detailed account is given of how the patients' own stories were collected. Drawing on a broad literature that is grounded in patients' words and deeds, Part Two introduces a non-religious ‘language of spirit’. Illuminated by patient art, Part Three shows what patients use this language to ‘say’ about their situation and how it is mediated through various metaphors. Part Four suggests ways of responding positively to patients' spiritual needs.

Palliative and end-of-life care are concerned with the physical, social, psychological, and spiritual care of people with advanced disease. It currently has a poorly developed research base, but the need to improve this is increasingly recognized. One of the reasons for the lack of research — and the variable quality of the research that is undertaken — is the difficulty of conducting research with very ill and bereaved people. Standard and well-established research methods may need to be adapted to work in this context. This means that existing research methods' books may be of limited use to palliative care practitioners seeking to do research for the first time, or to more experienced researchers wanting to apply their knowledge in palliative care settings. This book encompasses methods used in both clinical and health services' research in palliative care, with sections on clinical, epidemiological, survey and qualitative research, as well as a section covering skills needed in any research project. Each chapter provides an up-to-date overview of the research method in question, an understanding of its applicability to palliative care and of the particular challenges of using it in this setting.