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Books > Medicine > Other branches of medicine > Palliative medicine
Maintaining dignity for patients approaching death is a core principle of palliative care. Translating that principle into methods of guiding care at the end of life, however, can be a complicated and daunting task. Dignity therapy, a psychological intervention developed by Dr. Harvey Max Chochinov and his internationally lauded research group, has been designed specifically to address many of the psychological, existential, and spiritual challenges that patients and their families face as they grapple with the reality of life drawing to a close. Tested with patients with advanced illnesses in Canada, the United States, Australia, China, Scotland, England, and Denmark, dignity therapy has been shown to not only benefit patients, but their families as well. In the first book to lay out the blueprint for this unique and meaningful intervention, Chochinov addresses one of the most important dimensions of being human. Being alive means being vulnerable and mortal; he argues that dignity therapy offers a way to preserve meaning and hope for patients approaching death. Dignity Therapy: Final Words for Final Days is a beautiful introduction to this pioneering and innovative work. With history and foundations of dignity in care, and step by step guidance for readers interested in implementing the program, this volume illuminates how dignity therapy can change end-of-life experience for those about to die - and for those who will grieve their passing.
The case of Terri Schiavo, a young woman who spent 15 years in a persistent vegetative state, has emerged as a watershed in debates over end-of-life care. While many observers had thought the right to refuse medical treatment was well established, this case split a family, divided a nation, and counfounded physicians, legislators, and many of the people they treated or represented. In renewing debates over the importance of advance directives, the appropriate role of artificial hydration and nutrition, and the responsibilities of family members, the case also became one of history's most extensively litigated health care disputes. The Case of Terri Schiavo assembles a team of first-hand participants and content experts to provide thoughtful and nuanced analyses. In addition to a comprehensive overview, the book includes contributions by Ms. Schiavo's guardian ad litem, a neurologist and lawyer who participated in the case, and scholars who examine issues related to litigation, faith, gender, and disability. The volume also includes a powerful dissent from the views of many scholars in the bioethics community. The book is intended for students, health care professionals, policy makers, and other in search of carefully reasoned analyses of the case that will shape our view of death and end-of-life medical care for decades.
The effective management of pain from cancer is a top priority for
patients, carers and healthcare professionals, and has been the
subject of extensive research. Approximately two-thirds of cancer
patients will experience severe pain, and many of them will have
more than one pain. However, because of the increasing number of
available treatments for cancer, patients are surviving for longer
periods, and are developing complex consequences of their cancer
and its treatment, such as central and peripheral neuropathic pain
syndromes. Approximately 8 - 10% of cancer pain remains unrelieved
by conventional means.
Society has become increasingly diverse; multi-cultural, multi-faith and wide ranging in family structures. The wealthier are healthier and social inequalities are more pronounced. Respecting and working with the range of 'differences' among service users, families and communities in health and social care with ill, dying and bereaved people is a neglected area in the literature. As the principles of palliative and end of life care increasingly permeate the mainstream of health and social care services, it is important that professionals are sensitive and respond to the differing needs of individuals from diverse socio-economic backgrounds, ethnicities, beliefs, abilities and sexual orientations, as well as to the different contexts and social environments in which people live and die. This book explores what underpins inequality, disadvantage and injustice in access to good end of life care. Increasingly clinicians, policy planners, and academics are concerned about inequity in service provision. Internationally, there is an increasing focus and sense of urgency both on delivering good care in all settings regardless of diagnosis, and on better meeting the needs of vulnerable and disadvantaged groups. National initiatives emphasise the importance of resolving disparities in care and harnessing empowered user voices to drive change. This newly expanded, fully revised second edition, with 11 new chapters, provides a comprehensive analysis of discrimination, difference and disadvantage in end of life care, and offers practical guidance for all who seek to support the equitable provision of good end of life care.
Respiratory disease is the second most common cause of death
worldwide. Patients with advanced non-malignant disease, such as
chronic obstructive pulmonary disease, have similar or even greater
health care needs than those with advanced lung cancer.
Uncontrolled symptoms, distress, and social isolation contribute to
the poor quality of life experienced by such patients.
Ageing populations mean that palliative and end of life care for
older people must assume greater priority. Indeed, there is an
urgent need to improve the experiences of older people at the end
of life, given that they have been identified as the 'disadvantaged
dying'. To date, models of care are underpinned by the ideals of
specialist palliative care which were developed to meet the needs
of predominantly middle-aged and 'young old' people, and evidence
suggests these may not be adequate for the older population group.
The need for renewal and support for those who care for seriously ill, dying, and bereaved people has been acknowledged from the very beginning of the hospice and palliative care movement. While often referring to the rewards and satisfactions of the work, Dame Cicely Saunders was the -first to acknowledge that helping encounters with dying patients and distressed relatives could be a source of anguish and grief for dedicated and compassionate carers. Caregiver Stress and Staff Support in Illness, Dying, and Bereavement discusses the challenge of finding a balance between the support needs of patients, families, and staff and the resources available. With contributions from practitioners and researchers from around the world, this book recognizes that palliative care today is being provided in many different settings and that there may be wide variations in the way individuals and organizations identify and manage the stressors that arise through the work. This unique collection of international perspectives on the complexities and management of caregiver stress and staff support builds on the firm foundation Mary Vachon built over thirty years ago in her studies, yet broadens the scope to include significant social, political, and cultural variations on the theme.
A widely adopted practitioner resource and course text, this book shows how to apply knowledge about behavior change in general -- and the stages-of-change model in particular -- to make substance abuse treatment more effective. The authors are leaders in the field who describe ways to tailor interventions for clients with varying levels of motivation or readiness to change. They draw on cutting-edge theory and research on the transtheoretical model to explain what works (and what doesn't work) at different stages of change. Rich clinical examples illustrate the "whats," "whys," and "how-tos" of using the stages-of-change model to inform treatment planning and intervention for individuals, groups, couples, and families. New to This Edition *Reflects the ongoing development of the stages-of-change model and research advances over the past decade. *Chapter on stage-based brief interventions in health care, social service, and community settings. *Group treatment chapter has been significantly revised. *Expanded coverage of the change processes relevant to each stage. See also Group Treatment for Substance Abuse, Second Edition, by Mary Marden Velasquez et al., a manual for a group-based approach grounded in the transtheoretical model.
Recent years have seen increasing interest in the needs of children
facing bereavement, and a corresponding increase in services to
support them. This book addresses and explains the theoretical
concepts and practical implications behind the idea of brief work
with bereaved children and families. Flexible and accessible short
term services delivered at the right time underpin the strengths of
bereaved children, supporting their recovery rather than
pathologizing the grief process. In this way, the book also speaks
to the current interest in the concept of resilience and working
with families' strengths and possibilities, rather than merely
identifying their problems.
Childen's palliative care has developed rapidly as a discipline, as
health care professionals recognize that the principles of adult
palliative care may not always be applicable to children at the end
of life. The unique needs of dying children are particularly
evident across Africa, where the scale of the problem is
overwhelming, and the figures so enormous that they are barely
comprehensible: over 400,000 children in Africa died from AIDS in
2003, and out of the 166,000 children a year diagnosed with cancer,
85% of these are in the developing world. Despite the enormous
need, provision of children's palliative care in Africa is almost
non-existent, with very few health workers trained and confident to
provide care for dying children. The challenges of providing
palliative care in this setting are different to those in more
developed countries, contending with the shortage of physical and
human resources in addition to the vast scope of the care needed.
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 of 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.
Predicting survival and other outcomes is increasingly being
recognized as an important skill for palliative care doctors and
nurses, oncologists, and other healthcare professionals who treat
patients with advanced cancer. Accurate prognosis is essential if
we are to offer quality of care and 'a good death', as well as to
aid decision-making. There is much prognostic information available
that is scattered throughout the palliative care and oncological
literature but this is the first time it has been gathered
systematically in one place.
Effective palliative care that rests on a sound ethical foundation requires ongoing discussions about patient and family values and preferences. This is especially important when addressing care at end-of-life including artificial nutrition and hydration, withdrawal of life-sustaining therapies and palliative sedation as well as requests for assistance in hastening death. The eighth volume in the HPNA Palliative Nursing Manuals series, Legal and Ethical Aspects of Palliative Care, provides an overview of critical communication skills and formal organizational mechanisms, such as ethics committees and interdisciplinary rounds, required for decisions in ethical dilemmas which respect diversity in the views of colleagues, as well as patients. The content of the concise, clinically focused volumes in the HPNA Palliative Nursing Manuals series is one resource for nurses preparing for specialty certification exams and provides a quick-reference in daily practice.
The first book of its kind, Resilience and Palliative Care - Achievement in adversity takes the increasing international literature on resilience and applies it to palliative and end-of-life care. The book offers an overview of all key aspects of palliative care, presented through a resilience perspective. Why do some patients and families break down while others surmounts the challenges facing them? What interventions strengthen individual, family and community coping? This book aims to facilitate change with people facing the crisis of death, dying and bereavement. Much of the existing literature has focused on risk, problems and vulnerability; the emerging concept of resilience focuses on strengths and possibilities. The 'total pain'/'total care' approach pioneered by Dame Cicely Saunders and St Christopher's Hospice now needs reinterpreting in the light of changing contexts and challenges. The realities of demographic change and resource-constrained health and social care environments have generated an increasingly risk focused approach to service delivery. A narrowly medicalised approach has inevitable limitations; professional care alone will be unable to meet need and demand in the face of ageing populations, changing patterns of illness and the need for equity. The resilience approach offers a counterbalance that harnesses the strengths of individuals and the communities in which they live and in which most of their dying will take place. Resilience thinking emphasises the importance of public health and creates a partnership between patients, professionals and community structures, seeking to build community capacity and to deliver a preventive health care that will leave future generations less afraid of the dying and bereavement that will confront all of us. This book offers insights into how, at all levels of planning and delivering palliative care, there is the opportunity to maximise coping, build an infrastructure for self-help, and increase the capacity of strengthened teams and organisations.
Health care professionals seeking to improve the quality of life for those living with serious illness and nearing the end of life will find exactly what their organization needs in the second edition of this acclaimed book by Dr. Joanne Lynn and her colleagues. Improving Care for the End of Life provides expert guidance on how to make significant improvements now, at all levels of the health care system from the bedside and the hospital to the health care policy and legislative arenas by using the rapid-cycle breakthrough approach to change. The ideas are proven, and the stories of teams that have put them to use will inspire and enlighten. New to the second edition: BL New chapters to address issues of growing interest such as continuity of care, and the special needs of dementia patients and their loved ones BL Details on trajectories of care and how these affect decisions at the end of life BL Updated and expanded information on pain management, advance care planning, ventilator withdrawal, depression and delirium, advanced heart and lung disease, and more BL Scores of new insights, measurement approaches, and tips based on the experiences of hundreds of improvement teams nationwide BL Thoroughly updated references The sourcebook speaks to all managers of health care systems serving people with serious illnesses, including doctors in offices, nurse managers on hospital units, social workers in long-term care facilities, administrators of home care and hospice agencies, hospital chaplains, directors of volunteer services, and others.
Pain in later life is both quite common and disabling, and it
differs significantly in terms of its aetiology, diagnosis and
treatment from pain in the general adult population. Older people
often have complicated co-morbidities, have a high prevalence of
mental health problems (e.g. anxiety, cognitive impairment, and
depression) and respond to treatment in different ways compared to
younger people. Their specific needs are rarely discussed
specifically in more general texts.
Around one in three people in the western world will develop cancer at some stage in life and complementary therapies are increasingly being used alongside orthodox treatments as part of the 'integrative' approach to cancer care. Enhancing Cancer Care is a practical, evidence-based guide to complementary cancer therapies, also described as natural or holistic therapies. More and more patients are turning to these therapies as there is now considerable evidence that they can help with symptom-control and quality-of-life, and that some may also extend survival. Complementary therapies can also provide the patient with a greater sense of control regarding the management of their illness. From the editor of Integrated Cancer Care, this new title provides detailed commentary on a broad range of complementary therapies and features practical advice on how to implement therapies to enhance current practice. The first part of the book deals with the general principles behind complementary therapies and the factors driving their growing popularity, the challenges of evaluating their benefits and unwanted effects, and experience of using them in oncology units, hospices, the private sector and primary care. The second part includes chapters on specific interventions, including complementary therapies such as acupuncture and aromatherapy massage; lifestyle modifications through diet and exercise; creative therapies using art and music; and psychological and spiritual support for individuals and groups. These chapters provide descriptions of the therapies, a summary of the evidence for their benefits in cancer care, and illustrative case histories. The emphasis throughout this book is on enhancing practice; that is, using the therapies alongside conventional medicine, rather than as alternatives to it.
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 enables practitioners and teachers to share 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 practical, empowering guide to navigating your partner's diagnosis of a terminal or life-limiting illness, or death. Receiving the news that your partner has a terminal or life-limiting illness, or has died unexpectedly, is among the worst experiences in life. At a time when you are least able to cope, you are faced with a multitude of difficult decisions, some of which must be made quickly. What you need is a friend who has experienced everything you are about to face, who can support you as you navigate some tough, important choices. This book is that friend. There is plenty of information out there but where to start looking? What information is needed and how can it be accessed? What decisions are essential in the immediate term and what can be left until later? Throughout the book, the emphasis is on protecting and supporting those left behind by presenting almost every choice you may need to make and the possible implications of each decision. You will learn: - The importance of creating a will, arranging power of attorney, organising advanced decisions of treatment, and even getting married or entering a civil partnership - What you are entitled to from the state, the NHS and your employer - How to stabilise your finances and prepare to run a household alone - Where your partner ought to be during treatment and/or palliative care, and how to go about achieving this - Which decisions need to be made after death, from planning the funeral to accessing your partner's estate - How to navigate the grieving process and take control of a happy future No matter where you are in the process, How to Survive Losing a Loved One is a comprehensive, practical and empowering guide to coping with your partner's terminal illness and death, and building the next chapter in your life.
The idea of a philosophy of palliative care emerged with Cicely Saunders' vision for 'a good death', and was developed further with the 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, Randall and Downie 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 health care 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. Their philosophy prompts many ethical and philosophical questions about the future of palliative care.
All long-term illnesses, whatever their diagnosis, have much in common. The difficulties and challenges that come with illness, and the strategies to overcome them, are shared by most patients. Managing an illness effectively and tackling the difficulties it causes can greatly improve how you feel and your quality of life. This book identifies the challenges posed by illness and suggests a wide variety of ways in which you might meet them. Key to this is the idea of becoming expert in managing your own illness and learning how best to deal with it. The authors accept that you know more than them about how you experience it, so that rather than telling you what to do, they offer a tool box from which you may pick the strategies that best suit you. The two authors, one a person with a long-term illness and one a doctor, combine their expertise and experience to offer a practical and comprehensive guide along your own unique journey. If you have a long-term illness, or if you care for someone who does, then this is a book for you.
This is the fourth volume in a new international, multi-contributed series aimed at providing practical, clinical guidance on how to deal with difficult symptoms related to specific cancer sites. In this volume the Editors bring together first-rate palliative care with oncological treatment for patients with advanced breast cancer. The book is presented in a user-friendly handbook format, with use of tables and algorithms to ensure that it is portable, accessible and can be read and referred to on, or before going to, the ward, or before a domiciliary visit. Specialists in palliative care and oncology settings, working in the acute sector and in hospices, will find the book invaluable. It will also appeal to consultants as well as specialist registrars, clinical nurse specialists and nurse practitioners in palliative care and oncology. The Palliative Care Consultations series is primarily aimed at those individuals working in an acute hospital cancer centre and/or tertiary referral centre. Books are designed to give the busy clinician advice on clinical problems, both those rarely encountered and those that are very common, but difficult. The volumes are site specific and each volume encompasses a review of the current oncological or haemato-oncological management of advanced disease with symptom control advice. These volumes will give clinicians excellent advice on symptom control in the context of palliative care. The books will also be of use and interest to other professions working in acute hospitals.
Since the publication of the first edition of "The Medical Care of Terminally Ill Patients," the field of palliative care has progressed significantly, both socially and scientifically. In this new edition, Dr. Robert Enck reviews the results of clinical studies devoted to the care of dying patients. Special attention is given to pain management, management of symptoms, care of advanced cancer patients, and care of patients with nonmalignant diseases. More than 100 new references, a new list of abbreviations, and tables with new drugs and dosages provides valuable information. Dr. Enck places great emphasis on enhancing the quality of life while addressing the most common symptoms of terminal illness.
This book provides a practical, evidence-based overview of the supportive care of patients with urological failure, covering issues such as quality of life measurements, the role of the multidisciplinary team, and psychological and social support for patients, families and carers. The book focuses on chronic symptoms such as chronic prostatitis. It begins by looking at quality of life measurements, self-help strategies, the role of the interdisciplinary team, and psychological and social support. It then moves on to clinical chapters which cover issues such as patients who present with hematuria, urinary retention, urinary incontinence, neurological disease affecting the urinary tract, chronic prostatitis, and infertility; ending with a chapter on supportive care for the urology patient and family in the future. The book places a special emphasis on symptomatic interventions, particularly in the setting where the course of the illness cannot be modified. |
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