This workbook was created specifically for personal support workers and anyone who provides direct care. As a companion workbook to "Integrating a Palliative Approach: Essentials for Personal Support Worker's. Second Edition," this book will help you to solidify knowledge and develop skills in providing palliative and end-of-life care, and integrating a palliative approach. You will develop palliative care best practices and learn ways to provide culturally safe care to support a dying person and their family, including providing care with a trauma informed approach. The workbook is filled with creative learning activities designed to develop self-awareness, address bias and racism, and build palliative care knowledge and skills for supporting physical comfort and providing psychosocial care for the dying person and family. Examples of activities include reflective writing, short answer and true/false questions, mind mapping, creating vision boards, small and large group discussions, and role plays. Prepare yourself to care for the dying and their family by exploring your belief and biases through reflective writing developing your understanding of palliative and end of life care language, principles, and practises applying your knowledge in case scenarios, role-plays, in group discussion This is a companion resource to help you develop your capacity to provide culturally safe palliative and end of life care and integrate a palliative approach for any person with a life limiting illness.
Kath Murray has a love for hospice and palliative care and a love for education that is engaging, delicious, and digestible. Her passion is to provide exceptional resources to help nurses, health care workers, and personal support workers provide excellent care for the dying and their family, and to find meaning and value in doing so.
Integration of Palliative Care in Chronic Conditions: An Interdisciplinary Approach will equip multidisciplinary teams with the resources necessary to provide patients and their families with the best possible care and management of multiple chronic conditions. Written in an easily accessible outline format, this comprehensive text explores pharmacologic interventions; advance care planning; and the physiology, symptoms, diagnostics, and interventions of various chronic conditions and malignancies. In addition, case studies highlight approaches to the care of individual patients with varying backgrounds and needs. Emphasizing the importance of self care, spiritual and religious support, compassion, goal setting, education, preparation, and communication in all areas of the palliative care realm, this book is an essential resource in guiding healthcare professionals in their mission of providing quality care to patients and their families.
The first book of its kind, this must-have resource examines the integration of palliative interventions from a disease-specific approach, providing practical guidance on caring for patients who follow a progressive, chronic disease trajectory prior to death. This uniquely practical book addresses all aspects of palliative care, going beyond theoretical information to advise practitioners on the most effective management of common symptoms and providing physical, psychological, and spiritual comfort to patients and families. The multidisciplinary focus of care is reflected by collaborative contributors and diverse authorship of an oncology/palliative care nurse practitioner, a physician, and a social worker. Expert authors in the field of palliative care - an oncology/palliative care nurse practitioner, an MD, and a social worker - represent the collaborative nature of caring for chronically ill patients. The most common illnesses that cause death in the United States are addressed in separate chapters on specific disease states: Cardiovascular, Pulmonary, Nephrology, Oncology, and Neurology. Case studies at the conclusion of each chapter illustrate important patient scenarios in the context of clinical practice. Comprehensive drug information for symptom management and comfort measures is provided in an appendix, as well as palliative care assessment tools and helpful website resources. An entire chapter is devoted to cancer pain. Objectives at the beginning of each chapter introduce the reader to concepts that will be addressed in that chapter. Each chapter ends with multiple-choice objective questions to test the reader's comprehension, with answers and rationales provided in the back of book. Prognostic tables demonstrate precisely how and when to integrate palliative interventions into the course of an advanced illness, identifying prognostic indicators where appropriate. Other important topics are covered with chapters on sleep, ethics, cultural and spiritual issues, and the dying process.
Find out all you need to know about providing high-quality care to patients with serious illnesses from the 2nd edition of Palliative Care: Core Skills and Clinical Competencies. Drs. Linda L. Emanuel and S. Lawrence Librach, leaders in the field, address the clinical, physical, psychological, cultural, and spiritual dimensions that are integral to the care of the whole patient. They give you a broad understanding of the core clinical skills and competencies needed to effectively approach patient assessment, care of special populations, symptom control, ethical issues, and more. Clearly written in a user-friendly, high-yield format, this resource is your ultimate guidebook to the burgeoning practice of palliative medicine. Improve your pain management and symptom management skills with a better understanding of best practices in palliative care. Quickly review specific treatment protocols for both malignant and non-malignant illnesses, including HIV/AIDS, heart failure, renal failure, pulmonary disease, and neurodegenerative disease. Better understand and manage the common and unique challenges associated with delivering palliative care in various social settings, such as the ICU, hospice, and the home; and to diverse populations, such as children, elders, and vulnerable members of society. Expand your knowledge of palliative care issues with new chapters on Veterans, Special Populations, Prognostication, Delirium, Working with Families, Wound Care, Home Care, and Dealing with Economic Hardship. Find the information you need quickly and easily with a templated, high-yield format.
Accessible and instructive, Palliative Care guides and inspires health social workers to integrate palliative care principles into their current clinical practice. Through the lenses of environmental theory and intersectionality, rich case narratives and diverse practice settings highlightopportunities for social workers to enhance their work, thereby advancing whole-person care in the face of serious illness. The volume also models engagement, assessment, and intervention through key palliative care skills and language. Chapters include questions to concretize ideas and demonstratereal-world application, while case narratives cover a range of settings, diagnoses, and populations. This book is a useful tool for any social worker working with individuals and families navigating complex health care systems.
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
Palliative care is the interdisciplinary specialty focused on improving quality of life for people with serious illness and their families. This interdisciplinary care is provided by doctors, nurses, social workers, chaplains and others who work together with the patient's other doctors to provide an extra layer of support. Such care is appropriate for people at any age and at any stage in a serious illness, and can be provided together with curative treatment to address clinical, emotional, psychosocial and spiritual concerns of the patient and their family. To better understand how the principles of palliative care can be integrated into the overall provision of care and services to those facing serious illness, the Roundtable on Quality Care for People with Serious Illness held a public workshop in April 2017. This publication summarizes the presentations and discussions from the workshop.
An Investigation of Patients and Caregivers' Outcome and Professional Perspectives
Author: Wesley Too
Background: Although antiretroviral treatment is expanding in sub-Saharan Africa, the World Health Organization advocates for integration of palliative care with HAART because pain, other distressing symptoms and complex psychosocial challenges persist throughout the HIV trajectory. Palliative care improves the outcome for patients with HIV and may complement antiretroviral treatment by increasing adherence through better management of side effects from the treatment, providing patient and family-centred holistic care, and giving end-of-life care when necessary. However, integrating what have become two disciplines is challenging. Aim: To study the implications for palliative care provision in the context of changing policy to universal access to HAART for people living with advanced AIDS (PLWA) in Uganda. Research questions addressed in the study included: 1. How do patients with advanced AIDS (stage 1Il and IV) and with palliative care needs and their families experience care delivery and receipt over a period of 8 weeks? 2. How is the morphine roll-out programme among advanced AIDS patients operationalized in Uganda? 3. What are the challenges faced by health care workers involved in delivery and implementation of integrated palliative care for patients with advanced AIDS? 4. What are the views of key opinion leaders on development of palliative care policies in Uganda? Methods: A mixed methods approach was employed. The study comprised of three phases. In phase one, a consecutive sample of 30 newly enrolled patients advanced AIDS (stage III & IV) and their carers were recruited at Hospice Africa Uganda and followed up for 8 weeks. Qualitative interviews were conducted with patients and their carers at one time point and an outcome measure using African Palliative Care Association-Palliative Outcome Scale (APeA-POS) was used to assess changes in their experiences over 8 weeks, following access to palliative care. In phase two, 10 palliative care staff members participated in individual interviews and one focus group to explore the challenges they faced in delivering services to patients. Phase three explored, by the use of interviews with 7 key stakeholders, the broader context of palliative care policy development and opinions about key priorities for the future. Findings: Out of 30 patients, 14 were male and 16 were female. They ranged in age from 18-60 years. The majority of patients were bed-ridden and experienced distressing symptoms related to advanced AIDS and AIDS-defining cancers which necessitated timely palliative care intervention. The key findings of the study relate to the range of physical symptoms experienced by patients and the psychosocial challenges of disclosure and stigma encountered by patients and their families against u backdrop of profound poverty. Palliative care staff indicated two categories which broadly covered the challenges of palliative care delivery to PLWA in Uganda: service-linked and provider-linked challenges. Palliative health care staff and key stakeholders identified strategies to respond to palliative care needs for PL W A across four dimensions: a) partnerships or networking together with stakeholders; b) improving palliative care education; c) raising awareness of palliative care among communities and health care workers; d) advocacy and policies which support and strengthen initiation and expansion of palliative care services to PL W A, including the availability of morphine. Conclusion: The study shows the paramount importance of drawing on patients' and carers' experiences and concerns to shape models of African palliative care. Both palliative care staff and key informants' perspectives highlight successes, barriers and important lessons for palliative care service delivery in Uganda. These lessons have several implications across the dimensions of practice, education, policy and research. Palliative care staff need to work with several key players or stakeholders to address the many psychosocial issues affecting PL W A including support during treatment. The study indicates the need to translate government policies on palliative care into action.
Is there a place for palliative care within mental health? This inspirational book offers an excellent foundation for integrating best-practice specialist palliative care, into serious and enduring mental health service delivery. The shared practice values and vision between these two disciplines provide an optimistic starting point from which to address the lack of palliative care service delivery in mental health practice. Focussing on the similarity in philosophy between palliative care and mental health practice, it incorporates: person-centred practice relationship based connectedness a belief in compassionate care respect for autonomy and choice quality of life issues The book addresses the practice skills needed in preparation for competent intervention and treatment. Each chapter develops a theoretical framework, and which is supported by practical application. Both professionals and students of palliative care will find the interactive text and practical care-studies especially valuable, as will the professional working in the substance use. Its user-friendly approach will appeal to a wide range of readers various related disciplines.
Geriatric Palliative Care covers a broad spectrum of issues characterizing care near the end of life for older adults. Beginning with the social and cultural context of old age and frailty, this volume details specific aspects of palliative care relevant to particular disorders (e.g. cancer, strokes, dementia, etc.) as well as individual symptoms (e.g., pain, fatigue, anxiety, etc.). Communication between care-givers and patients, in a variety of settings, is also discussed. The theme of this book is that palliative care is the best approach to the care of chronically ill and frail elderly because of its focus on: quality of life; support for functional independence; and the centrality of the patient's values and experiences in determining the goals of medical care. Indeed, Geriatric Palliative Care provides a comprehensive medical reference for all clinicians who care for older adults.
Palliative care seems set to continue its rapid development into the early years of the 21st century. From its origins in the modern hospice movement, the new multidisciplinary specialty of palliative care has expanded into a variety of settings. Palliative care services are now being provided in the home, in hospital and in nursing homes. There are moves to extend palliative care beyond its traditional constituency of people with cancer. Efforts are being made to provide a wide range of palliative therapies to patients at an early stage of their disease progression. The evidence-base of palliative care is growing, with more research, evaluation and audit, along with specialist programmes of education. Palliative care appears to be coming of age. On the other hand numbers of challenges still exist. Much service development has been unplanned and unregulated. Palliative care providers must continue to adapt to changing patterns of commissioning and funding services. The voluntary hospice movement may feel its values threatened by a new professionalism and policies which require its greater integration within mainstream services. There are concerns about the re-medicalization of palliative care, about how an evidence-based approach to practice can be developed, and about the extent to which its methods are transferring across diseases and settings. Beyond these preoccupations lie wider societal issues about the organization of death and dying in late modern culture. To what extent have notions of death as a contemporary taboo been superseded? How can we characterize the nature of suffering? What factors are involved in the debate surrounding end of life care ethics and euthanasia? David Clark and Jane Seymour, drawing on a wide range of sources, as well as their own empirical studies, offer a set of reflections on the development of palliative care and its place within a wider social context. Their book will be essential reading to any practitioner, policy maker, teacher or student involved in palliative care or concerned about death, dying and life-limiting illness.
"The first edition of Communication in Palliative Nursing was published in 2012 and became the market leader for nurses wanting to learn more about how to improve and teach palliative care communication. For the last 8 years, it has remained the only text solely focused on the vital role of nurses in palliative care. During this time, the COMFORT model was taught to nurses nationwide who brought the curriculum back to their own institutions and taught components of the model to more than 10,000 healthcare providers across the United States (Wittenberg, Ferrell, Goldsmith, Ragan, & Buller, 2017). Numerous journal articles and research studies have been produced to highlight the principle components of the COMFORT model and test its effectiveness among healthcare audiences across a variety of clinical and educational settings. Through this all, as the model was disseminated to clinical audiences of bedside nurses, nurse leaders, nursing students, and interprofessional learners, feedback was captured about COMFORT. Comments revealed major components of the model that were working and weren't working for the nurses and other healthcare providers who utilized the strategies with patients and families, and began using curriculum tools for teaching and integrating palliative care communication instruction. So, much like the model's grounding in a transactional communication approach, which relies on the co-created interaction between parties, it was clear that the COMFORT model was also ebbing and flowing and had to change. More importantly, palliative care has been growing, changing, expanding, and becoming more sophisticated, more wide-spread! Now more than ever before, palliative care is provided in the home, clinic, or inpatient setting and serves patients who are seriously or chronically ill and their families. It became evident that in order to continue improvements to the model and to keep up with the changing landscape of palliative care and palliative patient populations, a new edition was necessary. Before we highlight the changes, it is never too early to overstate our steadfast commitment to the following principles: We believe that communication research and theory can shape palliative care practices, providing tools for a variety of contexts. We believe that palliative care, offering compassionate, holistic treatment for patients and their families, will not be possible without caring for the entire person (body and mind). We believe that communicating about palliative care must begin at diagnosis of serious illness, not just at end-stages. We believe in a patient-centered approach to communication that emphasizes the role of the family caregiver in the illness trajectory. We believe that intentional communication emphasizing team processes among physicians, nurses, social workers, chaplains, and other healthcare professionals improves palliative care practice. We believe that palliative care should be introduced early in the communication education of all health professionals. We believe that education about palliative care and communication must extend to patients and families who can then advocate for and partner more productively in such services. We believe that communication with the family caregiver is essential for the treatment of pain and symptom management. We believe that frequent conversations are needed across the disease/care trajectory, as patients and families encounter ongoing points of decision-making"--
The specialty of palliative care has traditionally grown out of oncology. This study considers the needs and experiences of patients dying from, for instance, stroke, heart disease or dementia by drawing on a range of specialties in medicine.
Addressing key questions about the need for palliative care, the current provision of services and the evidence for the effectiveness of a range of alternative methods of organisation in palliative care, this provides a base for policy decisions.
This new book provides a valuable resource for practicing nurses at all levels in the health care continuum who care for older adults at the end of life. The focus of the book is on enhancing the quality of life for older adult patients and families who have progressive, incurable illnesses. Focuses on quality end-of-life nursing care and its impact from a palliative care perspective. Addresses active and compassionate care therapies to enhance physical, psychological, social, and spiritual domains of life. Explores the spiritual, social, and psychological aspects of key nursing competencies at the end of life and progresses to the more evidence-based information and interventions related to pain, symptom management, disease progression, and care of the dying elder. Includes Case Studies which help put the content into a more humanistic perspective. Provides Evidence-Based Practice boxes that apply current research to findings.
The report talks about the difficulties faced by patients in major cancer hospitals across India. Released in October 2009, this 102-page report takes an investigative look into the pain treatment situation in these hospitals. The report identifies three key obstacles to improving the availability of pain treatment and palliative care, including restrictive drug regulations and the failure to train doctors about pain treatment methods. Visitors will find that the report is divided into several major sections including "Palliative Care and Pain Treatment in India" and "The Plight of Patients". Additionally, interested parties can also view the appendices attached to the report. An online slide show and a video feature round out the site.
Excellent end of life care for people with heart failure is challenging but possible. In easily digestible summaries, this book presents practical advice about how and when to integrate a palliative care approach alongside standard heart failure management.
Author: U. S. Department of Health and Human Services
Publisher: Createspace Independent Pub
The Health Resources and Services Administration (HRSA) of the United States Department of Health and Human Services has as its mission the improvement of access to health care and services for underserved and vulnerable populations. HRSA accomplishes this mission by partnering with community-based organizations in the delivery of health and social services, with academic health centers in the education of health professionals, and with State and local health departments in the areas of prevention, public health promotion and health care delivery. Improved quality of care and quality of life are the goals of the programs and initiatives of HRSA. To that end HRSA's HIV/AIDS Bureau has embarked on the publication of A Clinical Guide to Supportive and Palliative Care for HIV/AIDS. Through the work of visionaries in the fields of HIV/AIDS and palliative care, we conclude that excellent HIV care can be provided by integrating the principles and framework of palliative care into the delivery of care and services to people living with HIV/AIDS, throughout the continuum of illness. This integration of services holds the promise of patient and family-centered care that is proactive in addressing the multitude of issues with which patients are challenged. With this volume we seek to expand the definition of palliative care and to realize palliative care's full potential to improve the quality of care and the quality of life of those living with HIV/AIDS. The HIV/AIDS Bureau, through its Working Group on Palliative Care in HIV, has set forth the following working definition: Palliative care is patient- and family-centered care. It optimizes quality of life by active anticipation, prevention, and treatment of suffering. It emphasizes use of an interdisciplinary team approach throughout the continuum of illness, placing critical importance on the building of respectful and trusting relationships. Palliative care addresses physical, intellectual, emotional, social, and spiritual needs. It facilitates patient autonomy, access to information, and choice. Palliative care is complementary care, not alternative care, and therefore should not be provided only when disease-directed therapy fails or is unavailable. It is a mistake to adopt a palliative perspective and approach only at the last stages of illness. One need only reflect on the pain associated with receiving a first HIV diagnosis or upon the psychological and spiritual suffering that are the substrates of substance abuse and other behaviors exposing individuals to HIV, to realize the importance of using palliative care principles at all points along the course of this illness. Providers should focus their attention on comfort, relief of suffering, and quality of life throughout the course of HIV disease. The central role of medication adherence is not to be underestimated in stabilizing the course of disease, but other factors can be equally important in optimizing clinical outcomes. These factors include a wide range of hard-to-control socioeconomic as well as personal characteristics: an understanding of the disease process; empowerment in relation to personal health; a safe place to live; freedom from pain and distressing symptoms; adequate nutrition; treatment for substance abuse, depression and other mental illness; hope; adequate help of friends, family and other caregivers, especially when functional status is diminished and disease progression is ongoing. These challenges can be met successfully by using a palliative care framework to approach the patient, providers, caregivers, family, loved ones, and the health care system. This manual is organized to address the many aspects of palliative care that are key in caring for the person living with HIV and AIDS. A wealth of expertise and experience in the areas of HIV and palliative care has provided a unique document that expands the realms of both disciplines.