Nursing Care at the End-of-Life: Books

For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.

There is an unspoken dark side of American medicine--keeping patients alive at any price. Two thirds of Americans die in healthcare institutions tethered to machines and tubes at bankrupting costs, even though research shows that most prefer to die at home in comfort, surrounded by loved ones.Dr. Angelo E. Volandes believes that a life well lived deserves a good ending. Through the stories of seven patients and seven very different end-of-life experiences, he demonstrates that what people with a serious illness, who are approaching the end of their lives, need most is not new technologies but one simple thing: The Conversation. He argues for a radical re-envisioning of the patient-doctor relationship and offers ways for patients and their families to talk about this difficult issue to ensure that patients will be at the center and in charge of their medical care.It might be the most important conversation you ever have.

The many unfounded myths and fears that surround working with people at the end of their lives are dispelled in this thoughtful book, and the authors provide both practical and emotional support for those involved in caring for dying patients. The book covers everything from the philosophy behind the practice to the diverse roles in the multi-disciplinary team, as well as current challenges and opportunities facing end of life care, with an emphasis on how therapy and arts therapies can be integrated effectively. It also looks at palliative care models that address all aspects of a patient's wellbeing and conveys the latest research and challenges in the field, bridging the gap between theory and the realities of working with patients on a daily basis. Using material from artists and therapists working in the field, the varying demands of inpatient, outpatient and home care are described, as well as the processes of bereavement, how to handle the practicalities of loss and the help that therapists can give at this stage. How artists and therapists with experience of working at the end of life can be involved in other areas of care such as supporting older people in care homes and those living with dementia is also discussed. The book also introduces the important area of health promotion, and how there is a growing responsibility to change people's attitudes towards death, dying and bereavement. Clear, practical examples are given as to how this might be achieved. Full of professional advice and career guidance, this book will be an invaluable tool for those working with patients nearing the end of life and those considering working in this area, as well as students in training.

"This is a very substantive book that encompasses the various aspects of advance care planning, both prior to and after a diagnosis of a life-limiting disease. The realistic case studies help readers understand the complexities of decision-making by the individual and the family."--Doody's Medical Reviews While advance directives hold a great deal of promise for ensuring self-determination and quality of life near its end, the majority of Americans face life-threatening illness without having completed effective advance care planning.. This volume recounts the history of advance directives, chronicling the evolution of an approach that initially focused on completing forms, to one that now emphasizes more comprehensive strategies for facilitating conversations about end-of-life care and planning for dying and death. It provides helpful strategies for initiating and guiding discussions among providers, patients, and their loved ones, easing the burdens of uncertainty, and improving the efficacy of surrogate decision making near the end of life. Scholars and practitioners from a variety of disciplines provide a well-rounded view of the history and challenges of advance directives. Authors include palliative care physicians, nurses, social workers, grief counselors, educators, lawyers, psychologists, sociologists, and medical ethicists. The book shares successful strategies on how effective advance care planning can provide smoother transitions at the end of life and ensure better quality of living before death. It incorporates effective multidisciplinary, relationship-based models of advance care planning along with multidisciplinary perspectives to help caregiving professionals initiate conversations and disseminate relevant information to patients and their loved ones and advocates. Case studies illustrate the importance of, challenges with, and prospects for advance directives and advance care planning. The book addresses common barriers to advance care planning and offers ways to overcome them, as well as detailing public health, legal, and comprehensive community planning approaches to change how our current American society deals with dying, death, and end-of-life care. Key Features: Introduces a multidisciplinary, pragmatic approach to advance care planning Addresses strategies to reform advance care planning Presents case studies illustrating the importance, benefits, and challenges of advance directives Features successful initiatives in advance care planning and new directions that shift community practice related to dying, death, and end-of-life care. Includes the contributions of physicians, grief counselors, medical ethicists, social workers, psychologists, medical ethicists, lawyers, nurses, educators, and others

Awarded second place in the 2013 AJN Book of the Year Awards in the Palliative Care and Hospice category "This book provides many options for pain management in cancer patients, including pharmacological and nonpharmacological options, ... and] is well organized and easy to navigate." Score: 92, 4 Stars.--Doody's Medical Reviews "Overall, this book] is a comprehensive and wide-ranging text that, as proclaimed on the cover, is evidence-based and fully referenced. Practitioners and students alike will find it useful, and it deserves a place on the library shelf where people from a wide range of backgrounds can gain access."--International Journal of Palliative Nursing " This] text is full of 'clinical pearls' based on the authors'] extensive clinical experience with effective and ineffective pain management interventions...The scope of the content in this text is extremely comprehensive...newer content on the effect of opioid polymorphisms, cancer pain emergencies, myofascial pain, and chronic pain in cancer survivors places this text at the forefront in terms of cutting-edge issues in cancer pain management." Christine Miaskowski, RN, PhD, FAAN Professor and Associate Dean for Academic Affairs American Cancer Society Clinical Research Professor Sharon A. Lamb Endowed Chair in Symptom Management Research Department of Physiological Nursing University of California, San Francisco, CA From the Foreword Although the prevalence of uncontrolled cancer pain remains unnecessarily high, research has indicated that 90% of cancer patients with pain can be successfully treated with standard therapies. This concise yet extremely comprehensive guide to managing cancer pain will enable nurses on the front lines of pain assessment and management to incorporate effective strategies into their daily practice. It offers quick access to current evidence-based guidelines for busy nurses and nurse practitioners working in all oncology care settings. To facilitate quick information retrieval, the text is designed in a consistently organized, bulleted format with highlighted key information and tools for assessment and standardized treatment. It also serves as an important review for the ONS and HPNA certification exam. This book focuses on all aspects of cancer pain, including assessment and screening tools, pharmacologic and nonpharmacologic treatment options, current national guidelines for pain management, regional anesthesia techniques, patient-controlled anesthesia, and epidural pain management. It also includes updated information on the effect of opioid polymorphisms, cancer pain emergencies, myofascial pain, and chronic pain in cancer survivors. The book covers palliative care and end-of-life pain management, especially for patients who have symptoms that are not managed. Information on chronic pain conditions such as neuropathic pain in cancer and the use of adjuvant medications for pain control are included, along with special treatment options for addiction and substance abuse in the cancer population. The text additionally provides information on managing pain with difficult-to-treat populations. Key Features: Provides current, evidence-based information on all aspects of cancer pain management Includes important new guidelines on using a combination of pain management scales for optimal pain assessment and management Describes interventional techniques for managing severe pain situations Organized for speedy information retrieval

Over a period of almost 10 years, the work of the Project on Death in America (PDIA) played a formative role in the advancement of end of life care in the United States. The project concerned itself with adults and children, and with interests crossing boundaries between the clinical disciplines, the social sciences, arts and humanities. PDIA engaged with the problems of resources in poor communities and marginalized groups and settings, and it attempted to foster collaboration across a range of sectors and organizations. Authored by medical sociologist David Clark, whose research career has focused on mapping, archiving and analyzing the history and development of hospice, palliative care and related end of life issues, this book examines the broad, ambitious conception of PDIA - which sought to 'transform the culture of dying in America' - and assesses PDIA's contribution to the development of the palliative care field and to wider debates about end of life care within American society. Chapters consider key issues and topics tackled by PDIA grantees which include: explorations of the meanings of death in contemporary American culture; the varying experiences of care at the end of life (in different settings, among different social and ethnic groups); the innovations in service development and clinical practice that have occurred in the US in response to a growing awareness of and debate about end of life issues; the emerging evidence base for palliative and end of life care in the US; the maturation of a field of academic and clinical specialization; the policy and legal issues that have shaped development, including the ethical debate about assisted suicide and the Oregon experience; the opportunities and barriers that have been encountered; and the prospects for future development. A final chapter captures developments and milestones in the field since PDIA closed in 2003, and some of the challenges going forward.

As someone approaches the end of their life, it is vitally important that they receive quality care and support, that their wishes are met, and that they are treated with dignity and respect. Pathways through Care at the End of Life is a comprehensive guide to providing excellent, person-centred end of life care. Following a pathway from initial conversations about end of life to care in the last days of life and after death, it covers assessing need and planning care, co-ordinating care between different agencies, and ensuring quality in different settings, such as at home, in a hospice, or in hospital. Good practice guidance on communication, ensuring the person's needs are met, support for their family and how to facilitate a good death is given. Case studies illustrate real life practice, and questions throughout each chapter encourage reflective practice. This book will be essential reading for all those working with people at the end of life, such as nurses, social workers, GPs and home carers, as well as students in these fields.

How do people face life-limiting illness and death? This challenging question is discussed in-depth in Life to be Lived by looking at the feelings, hopes, fears and stresses associated with life-threatening illness, often experienced by patients and their carers.Drawn from personal research and clinical experience, the authors, who work in bereavement counselling and palliative care, examine the process of adjustment that patients and their families go through nearer the end of life.Case-based examples from counsellors, chaplains, and carers provide an accessible and candid look at the challenges that both patients and carers face when dealing with options from symptom and pain control, communicating the appropriate information to families, to adjusting to the psychosocialimplications of being ill. Life to be Lived is essential reading for professionals and trained volunteers who work as a part of multidisciplinary teams in palliative and end of life care to improve understanding of the attitudes and behaviour of their patients. Families and friends will also benefit from the book as they tryto come to terms with their own situations and how they can cope better with them.

This major new work updates and significantly expands The Hastings Center's 1987 Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying. Like its predecessor, this second edition will shape the ethical and legal framework for decision-making on treatment and end-of-life care in the United States. This groundbreaking work incorporates 25 years of research and innovation in clinical care, law, and policy. It is written for physicians, nurses, and other health care professionals and is structured for easy reference in difficult clinical situations. It supports the work of clinical ethicists, ethics committee members, health lawyers, clinical educators, scholars, and policymakers. It includes extensive practical recommendations. Health care reform places a new set of challenges on decision-making and care near the end of life. The Hastings Center Guidelines are an essential resource.

2011 AJN Book of the Year Winner in both Gerontologic Nursing and Hospice and Palliative Care ""The book is easy to read and is essential to all who work and care for those at the end of life."" --David Shields, RN, MSN, QTTT Assistant Professor of Nursing Capital University ""The book is thought provoking and, if you are like me, you will be assessing (consciously or subconsciously) how good you or your service are at providing holistic care around the time of death. It deserves to be widely read and I hope it starts many a conversation."" IAHPC Newsletter "" This book] is a gem. It is a rare balance of an interesting read with an incredible integration of factual information. I intend to share it in my long term care circles...A wonderful contribution "" Charlotte Eliopoulos, RN, MPH, PhD Executive Director American Association for Long Term Care Nursing ""Every once in a long while a short, succinct book comes along that awakens our senses and motivates us to action. This] is one such book. It cuts right to the chase to offer a new, innovative change for an old, outmoded rite of passage.""Barbara Dossey, PhD, RN, AHN-BC, FAAN Co-Director, Nightingale Initiative for Global Health, Canada and Virginia Director, Holistic Nursing Consultants, New Mexico (From the Foreword) This professional clinical guide presents nursing administrators and nurses in acute care agencies, nursing homes, hospice, and palliative care settings with detailed implementation strategies for accommodating dying persons and their loved ones as they make the transition from physical life. It presents the need for and the development of the concept: "Golden Room" concept: a place for dying that facilitates a dignified, peaceful, and profound experience for dying persons and their loved ones. This book presents a practical solution on multiple levels that will benefit all involved-patient, family, nurses, administrators, policy makers, and insurance companies. It presents the theoretical frameworks for end-of-life care and how the "Golden Room" concept fits into these frameworks.Published in partnership with the Watson Caring Science Institute, this unique resource: Advocates the use of "Golden Rooms," which provide dignified, private, and safe settings for death and dying Presents various cases that illustrate the need for a dignified death, as well as strategies on how to provide for this dignified death Provides questions of concern after each case scenario, suitable for class discussion or personal reflection Offers cost-effective end-of-life solutions for families, the medical establishment, and insurance companies