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This chapter examines the concept of patient choice and best interest in relation to symptom control and maintenance of function in end of life care. It discusses ethical issues which arise in pursuit of the aim of alleviation of suffering in end of life care and the aim of restoration or maintenance of function occasionally gives rise to similar issues. Professionals are responsible for selecting symptom control treatment options so as to promote the patient's best interests, and they ought to inform patients with capacity about possible serious adverse outcomes of symptom control interventions.

This chapter discusses symptom control in care of the dying. It begins by discussing how the Liverpool Care Pathway for the Dying Patient (LCP) can influence symptom control, and then determines the commonest symptoms in a dying patient. The chapter looks at managing various ailments of a dying patient, including pain, agitation, and nausea and vomiting. It then determines the different factors doctors need to consider when taking care of a dying patient, such as the application of drugs, providing comfort in the last hours or days of a patient's life, and even management of skin.

This chapter discusses the implications of the palliative care models on the quality of life and psychological well being of terminally ill patients. Experimental and descriptive studies that evaluated the model of palliative care and used quality of life as an outcome are considered. The term ‘quality of life’ includes the measures to assess the quality of life as well as the measures of pain control, symptom control, and general well being. The chapter does not include discussions on the development of research instruments geared to measure the quality of life, or the impact of palliative care on the quality of life and bereavement of relatives and families, or the implications of palliative care for non-terminally ill patients. However, it does include reviews of assessment tools, the concept of quality of life and its methods of assessment, and the role of care-givers in assessing the quality of life of the patients. Included as well are comparative studies of the palliative care practices and their impact on the quality of life of patients in the US and UK.

This introductory chapter explains the coverage of this book, which is about pediatric hospice care. The book provides specific information about providing for terminally ill children, including children's age-related understanding of death, the critical elements of pain and symptom control, and the psychosocial aspects of life-threatening illnesses in childhood and adolescence. It addresses the spiritual concerns of the family and sibling bereavement and describes inpatient palliative care practiced at St. Mary's Hospital for Children. The chapter also discusses the Children's Hospice International's (CHI) Program for All-Inclusive Care for Children and their Families (CHI PACC).

This chapter discusses symptom control in care of the dying. It is divided into three sections, each of which is written by a single author. The first section, written by Paul Glare, looks at the influence of the Liverpool Care Pathway for the Dying Patient (LCP) on symptom control, and the most common symptoms found in a dying patient. Pain management and managing agitation in dying patients are also studied. Andrew Dickman is the author of the second section, which focuses on the use of syringe drivers and managing respiratory tract secretions and dyspnoea in dying patients. Finally, the third section is prepared by Margaret Goodman, and it studies bowel care, micturition difficulties, mouth care, and mobility or pressure area care. Deciding when to stop administering nursing interventions is also discussed.

This chapter presents another short foreword to a book on psycho-social perspectives on Good Practices in Palliative Care in which Cicely Saunders reminds readers that the emphasis on symptom control in palliative care is ‘only the beginning’ — since to be effective it must focus much more widely on patients in their family and social contexts.

The primary aim of palliative care is the achievement of the best possible quality of life for patients and their families. In a palliative care setting, good symptom control is fundamental as it can improve quality of life. In haemato-oncology, unlike in other malignancies, the disease can be possibly cured. Although, in general, palliative care is provided for incurable diseases, patients with haematological malignancy often require palliative care. These patients are often symptomatic, are treated aggressively, and are the most likely to die in hospitals. Although hospital healthcare professionals have crucial roles, they must adapt an appropriate management strategy specifically designed for potentially curable diseases. This chapter provides a practical overview of the assessment and management of disease- and treatment-related symptoms. Since little evidence is available on symptom control in haemato-oncology, the evidence presented herein is basically derived from studies in patients with other advanced cancers.

This chapter by Cicely Saunders appeared in the first edition of the influential Textbook of Pain, edited by Patrick Wall and Ronald Melzack. Here, she begins by going back to the first clinical study of the way patients die, reported by Sir William Osler in his 1906 lecture Science and Immortality. The chapter contains a report from two groups of staff, mainly nurses, who had discussed the first signs of impending death. They noted among the patients: irritability, sensitivity to minor discomforts, and occasional obsessiveness about belongings. Pain on movement was of most concern to the nurses in the last few days. There are also sections on pain in sudden death and the fear of impending death, together with research into symptom control among the dying, and out of body experience (OOBE).

This chapter focuses on the terminal stage of persons with ALS. It focuses on the care of the person with ALS at the end-of-life stage of the illness. Care at the end of life requires particular attention, symptom management, support of the patient, family, and professional carers. Care at the end of life is crucial in palliative care as it provides some of the most powerful memories for those who are left behind. The future attitudes of the patient's family and friends towards severe illness in themselves or others and in death itself will be determined and moulded by this experience. Good symptom control and good communication with the patient so long as this is possible is crucial and significant not only because it benefits the ALS patient but also because it serves as a public health measure for those who are left behind who have been close to the patient.

This chapter provides a brief account of the diagnosis and treatment of some of the common symptoms found in terminally ill patients. It discusses the causes and recommended treatment for these symptoms, which include anorexia, weight loss, insomnia, and dyspnoea. The chapter also provides a list of essential drugs often given until the last day of life, including morphine, anticonvulsants, and psychotropic drugs.

In this 2000 article, Cicely Saunders likens the evolution of palliative care to that of assembling a kaleidoscope — ‘the putting together of many demands which were not previously related, giving a shake and finding that they come down in a new pattern or synthesis’. An encounter with one patient in 1948 was the catalyst for the Hospice Movement. The challenge to undertake appropriate pain and symptom control together with experience in further listening to patients in the small number of homes especially planned for dying people finally came together during the 1960s as the impetus for the first modern hospice which opened in 1967. Since then, palliative care has been developing worldwide and has shown that the basic principles demonstrated in those early years can be interpreted in various cultures and with different levels of resources.

This introductory chapter explains the coverage of this book, which is about palliative care and pain management in terminally ill patients. The book examines the issues of terminal pain, the use of analgesics, control of symptoms other than pain, components of total pain, and the use of adjuvant therapy in pain control. It also highlights the importance of community care and hospital-based geriatric services in easing the physical burden of care on relatives.

This chapter discusses surgical palliation of the major symptoms, focusing on the surgical aspects of palliation and reflecting on the author's own clinical experience in managing incurable disease. It provides the natural history of head and neck cancer, and the effect of treatment on morbidity and the health-related quality of life. The chapter also determines whether surgical rehabilitation is appropriate for patients following tumour ablation. Symptom control, surgical palliative procedures, nutritional support, and loco-regional control are discussed as well. The dental considerations in general palliative care are provided in the latter part of the chapter. The chapter determines that palliative surgery for patients who have head and neck cancer is challenging. It also shows that radial surgery may lead to poor quality of life and function, and that the chances of survival remain unclear.

This 1999 article from The Hospice Journal, again explores the theme of hospice development and reiterates that this is a history born out of the experience of listening to patients. It goes on to make the important point that the basic principles of this system of care must be worked out and interpreted in different settings, wherein they bring ‘new possibilities of humanising life as well as death’. It was because a number of people took time to listen to patients and families facing mortal illness that the Hospice Movement has grown world-wide since it began in the 1960s. The addition of new skills in pain and symptom control, the understanding of the problems faced by families, and the need for research and teaching has brought the old traditions in care and caring into the present day.

This chapter describes the spectrum of conditions involved requiring ACP in paediatrics, the challenges of ACP in paediatrics, and drivers, evidence base, tools, and pathways to support paediatric ACP. It also discuses maintaining support for the family at the time of and following death, and reflects upon messages from special journeys. The discussion suggests that families need care that is planned in partnership with them, is anticipatory, is regularly reviewed, takes account of the whole family's needs, including siblings, and especially the child/young person, enables choice, encompasses parallel planning, provides access to 24/7 expertise in symptom control, and engages in anticipatory bereavement care.