The development of medical treatments and the extension of life expectancy during much of the last century left much suffering un-addressed. The development of the modern hospice movement, in the UK and the US, challenged conventional thinking that symptoms could not be controlled and that death was failure. Although a small number of hospices had existed for many years, the development by Dame Cicely Saunders of St Christopher's Hospice in South London in 1967, marks for many the beginning of a modern hospice movement, concerned not only with the best in care, but also research into improving practice and education. In the intervening thirty or so years the principles and philosophy of hospice care have spread world-wide. They have been adapted to the needs of patients and families living in different societies, and modified to work within and alongside a wide range of health care systems. Many people with cancer have been enabled to maintain a good quality of life, to die well, and to know that their families are supported after their deaths. There is much to celebrate. But sadly there are still patients who even today miss out on the best in care, still die in pain, without appropriate physical, psychological and spiritual support.
While some cancer patients do miss out on care, cancer accounts for only one in four deaths, and far fewer patients with non-malignant diseases seem to receive appropriate care. And there is a lack of knowledge of what is to be done for the best. It is this lack of knowledge that drove us to prepare this book.
Since the inception of modern hospice care, it has been recognized, that the principles of hospice care might apply to other patients with progressive life-threatening or advanced diseases. But the focus of hospice and palliative care has remained on cancer. This has enabled the rapid progress we have seen in symptom control and in the development of appropriate services. But the question remains of whether other people would also benefit from the principles and practice of hospice and palliative care. The gaps in what we know means that it is often not possible to provide definitive answers to questions such as which other patients, and when. We hope, however, that readers will—like us—be stimulated, provoked, informed and challenged by the material presented here, and that this volume will therefore play an important role for those who wish to seek ways to improve care, and those who wish to furthering our understanding of the needs of patients with progressive non-malignant disease. In the future, just as research into the management of problems and into providing care improved the lot of patients with cancer, circumstances for those with non-cancer diseases will be improved.
We are indebted to the authors of each chapter in the volume. They have risen magnificently to the challenge of being requested to produce evidence-based chapters in areas with often limited evidence. It has been a great privilege to work with them, during the time consuming and complex area to producing a book of this scale and scope. We would thank Bimpe Akinwunmi, who provided secretarial support to us during the production of the volume. She has, as always, been professional, patient and supportive—even when vexed by our administrative abilities.
(p.viii) Each of us also have people to whom we are indebted. JAH is grateful for the forbearance and encouragement of Keith, and for the diversions provided by Jonathan and Edward. IJH is grateful to the friends, family and colleagues who endured her during the preparations for the book.