Palliative Care in Japan for Individuals with Amyotrophic Lateral Sclerosis


Book Description

Palliative care has not been focused on noncancer yet. Amyotrophic lateral sclerosis (ALS) is a fatal, rapid progressive, and intractable neurodegenerative disease. Individuals with advanced ALS cannot perform activities of daily living by themselves, but their mental awareness remains clear. Individuals with ALS experience various pain soon after diagnosis, and a multidisciplinary team approach is needed because their pain can become complicated Caring for individuals with ALS needs to both start and end with palliative care in the physical, psychological, social, and spiritual aspects. The Japanese Ministry of Health, Labour and Welfare enacted the Principles of Policy for Rare and Intractable Diseases (nanbyo), which were the first set of such principles to be established in the world. This chapter describes the palliative care in Japan, from the perspectives of nursing and nanbyo measures. Also, three unique characteristics of ALS care in Japan are mentioned: the high level of disagreement between patients and family; the high rate of ventilator use compared with Western countries; and the low consumption of morphine. Healthcare practitioners need to apply the notion of the total pain to provide palliative care to individuals with ALS and acknowledge the challenges of providing timely symptomatic management.




Highlights on Several Underestimated Topics in Palliative Care


Book Description

This book focuses on several underestimated topics in palliative care. Seven chapters have been divided into four sections: Ethical Issues, Volunteers in Palliative Care, Special Circumstances, and Prognostic Models in Palliative Care. The underestimated topics concern several ethical themes such as the Balance sheets of suffering, Good Death, Euthanasia, Assisted suicide, and the question of the 'Do not attempt resuscitation'. In addition, the role of volunteers, the approach to non-malignant diseases such as diabetes and Amyotrophic Lateral Sclerosis are also addressed. Finally, the features and utility of different tools in order to facilitate optimal decision making for both physicians and patients, are given in details. This book will aid several figures facing the daily challenges of palliative care. Clinicians, nurses, volunteers, students and resident trainees, and other professionals can find this volume useful in their very difficult but extraordinarily fascinating mission.




Palliative Care in Amyotrophic Lateral Sclerosis


Book Description

This volume provides an evidence-based guide to the care of people with ALS/MND, including the control of symptoms, the psychosocial care of patients and their families, and care in bereavement.




Palliative Care in Amyotrophic Lateral Sclerosis


Book Description

Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease 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. Palliative Care in Amyotrophic Lateral Sclerosis: From diagnosis to bereavement 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. Case studies are used to emphasise the complexity of the care needs and involvement of the patient and family, culminating in discussion of bereavement. Different models of care are explored, and this new edition utilizes the increase in both the evidence-base and available literature on the subject. New topics discussed include complementary therapies, personal and family experiences of ALS, new genetics research, and updated guidelines for patient care, to ensure this new edition remains the essential guide to palliative care in ALS.







Amyotrophic Lateral Sclerosis


Book Description

Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disorder with a progressive and fatal course, with no known medical therapies that can reverse the disease or halt its progression. Palliative care is the mainstay of disease management, aimed at maximizing Quality Of Life (QOL) for the patient and caregiver. Clinicians caring for patients with ALS need to understand complex psychological issues in the patient and caregiver, including depression, anxiety, hopelessness, and wish for hastened death (physician-assisted suicide). They also need to confront the psychological implications of rapidly advancing genetic research, the impact of cognitive and behavioural dysfunction in a sizable minority of ALS patients, and caregiver burnout. Healthcare providers can optimize care by better understanding not only these factors, but by learning how to facilitate their management with problem-solving, coping techniques, and with psychologically-based approaches such as mindfulness and other non-pharmacological approaches aimed at maximizing QOL. Amyotrophic Lateral Sclerosis: Understanding and Optimizing Quality of Life and Psychological Well-Being provides a detailed review and evaluation of ALS, presented in a comprehensive and integrated fashion. The book achieves this through detailed and up-to-date information about the current state of knowledge in this field. It also offers new insights regarding future directions for research. This book will provide clinicians with a comprehensive description of the psychological aspects of ALS and their management, and incorporates chapters written by recognized scholars in their respective fields.




Palliative Care in Neurology


Book Description

Over the last 50 years palliative care has usually been associated with cancer patients but more recently there has been increased discussion of the role of palliative care for neurological patients. In the past years, neurology has moved from being a purely diagnostic area to a very therapeutically active one. A further step needs to be taken to modify the therapeutic activity from “cure” to “care” depending on the patient’s disease trajectory. Palliative care has been associated with care at the end of life, whereas it may be appropriate earlier in the disease progression, and will extend after death in the support of bereaved families. The care of patients with neurological disease, and their families, will encompass the psychological, spiritual and existential issues and neurologists, and the teams in which they work, should develop skills to consider all aspects of care, in order to maximize the quality of life of all involved, and enable patients to die peacefully.







Neurodegenerative Disorders as Systemic Diseases


Book Description

This book sheds new light on neurodegenerative disorders as systemic diseases. Classically, neuronal cell death was a hallmark of such disorders. However, it has become evident that neural dysfunction is more important in the pathophysiology of neurodegenerative disorders. More recently, the prionoid-spreading hypothesis of disease-causing molecules has attracted a great deal of attention. Therapeutic strategies thus must be reconsidered in the light that neurodegenerative disorders are indeed systemic diseases. The first part of this book introduces the concept of neurodegeneration in biology and pathophysiology. The second part focuses on clinical evaluation and biomarkers from the perspective of this new concept, while the third summarizes the risk factors of neurodegeneration. The fourth part of this work indicates future directions of treatment, and the final part discusses health promotion for prevention and quality of life. This book will be of interest to both researchers and medical personnel, and provides a fresh approach to neurodegenerative diseases, paving the way to new research and improved quality of health care for patients.




Motor Disorders


Book Description

Preeminent Neurology text extensively updated/expanded by 70 leading authorities,providing encyclopedic summary of scientific advances/new clinical practices; aiding in evaluation, diagnosis, and treatment of various motor disorders; and giving...