Oxford American Handbook of Hospice and Palliative Medicine and Supportive Care 2nd Edition
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In the United States, hospice and palliative medicine has emerged as a new subspecialty recently recognized by the American Board of Medical Specialties. During the last 0 years there has been a very significant increase in the number of inpatient and outpatient palliative care programs, as well as a major increase in the number of patients who access hospice
for end- of- life care.Unfortunately, educational efforts are lagging behind, and the vast majority of medical students, residents, and even fellows receive minimal palliative medicine education in the United States. However, these junior physicians, along with a number of busy clinical specialists, are exposed to patients with progressive incurable illnesses and their families on a daily basis.
The purpose of this handbook is to provide up- to- date, practical, and concise information to healthcare professionals delivering care to patients requiring hospice and palliative care in the United States. This includes physicians, nurse practitioners, fellows, residents, and students.All the chapters are primarily aimed at the clinical and administrative arrangements within the American healthcare system, including the hospice Medicare benefit.
We believe this book will provide rapid access to most of the daily bedside clinical and administrative needs, and it will hopefully help our colleagues in the delivery of excellent palliative and hospice care.We would like to acknowledge the authors of each of the chapters for having committed their time and effort to our joint project. We would also like to acknowledge the commitment to excellence by Oxford University Press and in particular Andrea Knobloch, our Senior Editor, for the excellent work in coordinating our book. Finally, we would like to acknowledge the daily effort of healthcare professionals who have contributed by their daily clinical work, education, and research to the development of theextraordinary body of knowledge that we have had the privilege to synthesize in this book
the modern hospice movement started in the 960s in the United Kingdom.
patients with progressive incurable illnesses were admitted to inpatient hospices and also received home hospice care until death. hospices delivered care very close to the end of life (Figure .). In the 970s it became clear that many patients with severe distress were being admitted to acute care hospitals. Dr. Balfour Mount coined the term palliative careand adapted many of the principles of the British hospice movement to acute care hospitals, initially in Canada and then worldwide.palliative care programs2,3developed with three main characteristics:
• Multidimensional assessment and management of severe physical and emotional distress
• Interdisciplinary care by multiple disciplines in addition to physicians and nurses
• emphasis on caring not only for the patients but also for their families.
Inpatient palliative care programs provided care earlier than hospice programs (Figure .). however, it became clear that many of the patients with chronic progressive illnesses had severe symptom burden before they became admitted to the hospital and therefore outpatient palliative care programs were developed for early access.
In the 990s supportive care emerged as a discipline aiming to provide predominantly cancer patients with support for the management of treatment- related adverse effects as well as disease- related symptoms.
Over time, supportive care has also expanded into domains such as psychosocial and spiritual care, communication, and survivorship care
Symptom assessment is very important because symptoms directly affect patients’ distress level, quality of life (QOL), and survival.
Symptoms can be related to the disease itself, its treatment, and comorbid illnesses.
Multiple physical, psychological, and spiritually distressing factors affect QOL, a multidimensional construct with specific emotional, physical, and social aspects2
(Figure 2.).the symptoms and their interference with life increase with increasing cancer stage, possibly reflecting tumor burden and treatment complications.this increasing symptom burden decreases patients’ QOL.2
Symptoms affect but do not necessarily determine patients’ QOL.the experience of patients living with advanced illness is complex; it includes physical symptoms, coping, financial concerns, caregiver burden, social and family changes, and spiritual concerns. In clinical practice, patients present with multiple symptoms that require simultaneous assessment and management. Clinicians must have an effective assessment strategy that respects the treatment goals and the patient’s wishes.
pain is one of the main symptoms experienced by cancer patients, during both curative and palliative therapy. pain often triggers the patient’s initial medical evaluation prior to the diagnosis of malignancy. numerous national and international surveys have found that 30%– 50% of cancer patients in active therapy and as many as 60%– 90% with advanced disease have pain.– 5
pain, however, is undertreated. the reasons are many and include physicians’ lack of knowledge, lack of availability of opioid medication, governmental regulations, physicians’ fear of regulations, diversion of medication, and fear of addiction.6,7
Malignant diseases— both solid tumors, such as in lung or colon cancer, and liquid tumors, such as in leukemia— can lead to pain symptoms. the pain may be due to the tumor itself, either by direct involvement (e.g., of the bone, nerves, or viscera) or by indirect effects (e.g., tumor release of inflammatory mediators), or to treatments aimed at cure or palliation (see Box 4.). pain associated with direct tumor involvement occurs in 65%– 85% of patients with advanced cancer.
Cancer therapy accounts for pain in approximately 5%– 25% of patients receiving chemotherapy, surgery, or radiation therapy.8pain syndromes commonly observed in the noncancer population are present in 0%– 5% of cancer patients— for example, lower back pain secondary to degenerative disc disease.effective pain management involves an interdisciplinary approach using multimodal techniques, the goal being to relieve the patient’s suffering. precise assessment of pain and associated factors is crucial, as the objective of treatment is to treat the cause whenever possible.In this chapter the authors discuss the most practical aspects of pain management in patients receiving palliative care. While the focus here is on pain management in patients with cancer because cancer- related pain is common and often severe, the same principles of pain management apply to patients receiving palliative care for a variety of diseases.