- Email: [email protected]
Meeting the Needs of Children Living with Life-Threatening Conditions
622
Book Reviews
orexia—are well covered here. In addition, symptoms often overlooked in other texts, including urinary incontinence, dysphagia, and pressure sores, receive detailed attention in Enck’s book. Additional chapters highlight symptoms and management issues specific to individual life-threatening illnesses including cancer, dementia, motor neuron disease, AIDS, chronic vegetative state, and advanced heart and lung disease. Inclusion of common screening tools used in palliative care—such as the Brief Pain Inventory and the Edmonton Symptom Assessment Scale—would have made the text more useful. Some dated information from the first edition remains in this book, and some of the new material is not well integrated. The discussion of HIV infection is particularly in need of updating. The “newer combination antiviral regimens” are mentioned only briefly while a long paragraph describing the initial data about a “new antiviral” AZT remains. None of the material on HIV infection adequately reflects the change in the natural history, morbidity, and therapy of HIV infection that has occurred since the development of highly active antiretroviral therapy. There is no discussion of the morbidity associated with hepatitis C, the leading cause of death in HIV patients. Although more effort was taken in updating the discussion of depression, it remains weighted toward the tricyclic antidepressants and benzodiazepines, with only limited material on the role of SSRIs and psychostimulants, and no mention of some of the newer atypical antidepressants. It is difficult to say how this text fits into the growing selection of palliative care educational resources. It is clearly intended to be an introductory text and certainly will not take the place of the Oxford Textbook of Palliative Medicine. It will prove useful for teaching symptom management to students and residents; though it is not as good as McDonald’s case-based textbook either in these areas or in discussing broader topics in palliative care. Despite these limitations, this new edition of Enck’s The Medical Care of Terminally Ill Patients represents a useful addition to the rapidly growing selection of Palliative Care texts. A clinician involved in managing the symptoms of seriously ill patients will find many practical guidelines that enhance their care of patients.
Vol. 24 No. 6 December 2002
Meeting the Needs of Children Living with LifeThreatening Conditions Marcia Levetown, MD
Hospice Care for Children, 2nd Edition Edited by Ann Armstrong-Dailey and Sarah Zarbock Published by Oxford University Press, Inc., New York, 2001 432 pages, $45.00 There are very few resources for pediatric palliative and hospice care currently available. Generally, the pediatric sections of palliative care texts are small, reflecting the much smaller numbers of children who die compared to adults. Nevertheless, for those of us who care for children living with and dying from lifethreatening conditions, a comprehensive, clinically useful resource would be of great value. The second edition of Hospice Care for Children comes much closer to this ideal than the first, with expanded chapter topics and more valuable tables, but unfortunately still falls short of the mark. Still present are the important chapters on children’s understanding of death, though with only one updated reference. Pain and symptom management provides excellent tables of assessment tools, their recommended uses and pitfalls, but would be improved by greater discussion of their use for infants. In addition, a description, based on published research (such as that by Hunt, McCallum, and Wolfe), of the epidemiology of symptoms in children living with life-threatening conditions would be well placed here. Increased discussion of pediatric-specific information, such as physiologic differences in drug-binding and metabolism in different phases of childhood
Marcia Levetown, MD is a pain and palliative care education consultant in Houston, Texas, USA. Dr. Levetown is also a Faculty Scholar of the Project on Death in America of the Open Society Institute.
Vol. 24 No. 6 December 2002
Book Reviews
and information about the epidemiology of pediatric disease also would be helpful. The prevention of procedure-related pain, promotion of parental competence to treat symptoms at home, and the importance of reassessment of symptoms after intervention deserve further emphasis. On the positive side, however, the chapter that addresses these issues appropriately validates the use of palliative care concurrently with life-prolonging measures. There are some assumptions regarding the level of expertise of the reader, such as explaining nociceptive and neuropathic pain and describing distraction and guided imagery, that may well have been appropriate for the book’s audience. The new chapter on Pediatric Hospice Nursing is quite disturbing. The final message seems to be that the nurse is there to protect the child from all other care providers and that he/she can do it all alone. This is not consistent with the model advocated in most settings, and seems to be counterproductive. The neonatal chapter is useful to remind the reader that palliative care for neonates, even in the NICU setting, is appropriate and doable. Unfortunately, several assertions, particularly regarding legal and ethical issues, are inaccurate. Continuing use of terms such as ordinary and extraordinary, rather than weighing the hoped-for benefit and expected burden of the therapy, as discussed in the ethics community and more usefully with families, is just one example. An overview of the important positive effect of sharing autopsy results with families is helpful. The chapter on pediatric AIDS is disappointing. While written by one of the most pre-eminent scholars and practitioners in the field, there is no discussion of the symptomatology specific to children with AIDS, nor the treatment of these symptoms. Instead, there is a discussion of the social milieu and psychosocial impact of death and HIV; the reader is confronted by pleas for change of societal values and the authors’ political opinions instead of immediately helpful information to care for such children.
623
In this first half of the book, Issues on Clinical Management, the writing is spotty and in need of significant editing. Some of the writing is confusing and distracting as well as repetitious. Chapters in the second half of the book, Support Systems, are more helpful. The chapters on caring for bereaved parents, for bereaved siblings, and on spiritual care are all well written and well referenced, with good practical suggestions. The staff support chapter provides clear delineation of the issues and many excellent suggestions for enhancing teamwork and interdisciplinary cooperation, as well as mentoring strategies and methods to prevent burnout. However, the resources needed to effect such solutions may be beyond the scope of most hospices, let alone other health care institutions. The Volunteer, School, and Therapeutic Play chapters are very practical and full of helpful references and resources. The Primary Care Physician chapter is a bit too idealized; although in a perfect world the role described could be filled, it seems unlikely that anyone in primary care would have the time and expertise to perform in such a manner. The chapter Lessons from Pediatrics for Palliative Care is interesting, but seems better placed in a book on care of adults. The Inpatient chapter is well done and the Ethics chapter is comprehensive, if a bit erudite compared to the rest of the volume. The final chapter on incorporating children into an adult program is excellent, covering many of the concerns that most hospices likely to serve children will have. The appendix of reading materials is very practical and helpful. In summary, Hospice Care for Children covers an important array of topics that are relevant to the multiple disciplines that provide palliative care. Much of the book is well-written and practical, but important gaps continue to exist. More attention to the practical issues for those unused to caring for children, and the conditions that are life-threatening in the pediatric age range, would improve this otherwise valuable book.
Book Reviews
orexia—are well covered here. In addition, symptoms often overlooked in other texts, including urinary incontinence, dysphagia, and pressure sores, receive detailed attention in Enck’s book. Additional chapters highlight symptoms and management issues specific to individual life-threatening illnesses including cancer, dementia, motor neuron disease, AIDS, chronic vegetative state, and advanced heart and lung disease. Inclusion of common screening tools used in palliative care—such as the Brief Pain Inventory and the Edmonton Symptom Assessment Scale—would have made the text more useful. Some dated information from the first edition remains in this book, and some of the new material is not well integrated. The discussion of HIV infection is particularly in need of updating. The “newer combination antiviral regimens” are mentioned only briefly while a long paragraph describing the initial data about a “new antiviral” AZT remains. None of the material on HIV infection adequately reflects the change in the natural history, morbidity, and therapy of HIV infection that has occurred since the development of highly active antiretroviral therapy. There is no discussion of the morbidity associated with hepatitis C, the leading cause of death in HIV patients. Although more effort was taken in updating the discussion of depression, it remains weighted toward the tricyclic antidepressants and benzodiazepines, with only limited material on the role of SSRIs and psychostimulants, and no mention of some of the newer atypical antidepressants. It is difficult to say how this text fits into the growing selection of palliative care educational resources. It is clearly intended to be an introductory text and certainly will not take the place of the Oxford Textbook of Palliative Medicine. It will prove useful for teaching symptom management to students and residents; though it is not as good as McDonald’s case-based textbook either in these areas or in discussing broader topics in palliative care. Despite these limitations, this new edition of Enck’s The Medical Care of Terminally Ill Patients represents a useful addition to the rapidly growing selection of Palliative Care texts. A clinician involved in managing the symptoms of seriously ill patients will find many practical guidelines that enhance their care of patients.
Vol. 24 No. 6 December 2002
Meeting the Needs of Children Living with LifeThreatening Conditions Marcia Levetown, MD
Hospice Care for Children, 2nd Edition Edited by Ann Armstrong-Dailey and Sarah Zarbock Published by Oxford University Press, Inc., New York, 2001 432 pages, $45.00 There are very few resources for pediatric palliative and hospice care currently available. Generally, the pediatric sections of palliative care texts are small, reflecting the much smaller numbers of children who die compared to adults. Nevertheless, for those of us who care for children living with and dying from lifethreatening conditions, a comprehensive, clinically useful resource would be of great value. The second edition of Hospice Care for Children comes much closer to this ideal than the first, with expanded chapter topics and more valuable tables, but unfortunately still falls short of the mark. Still present are the important chapters on children’s understanding of death, though with only one updated reference. Pain and symptom management provides excellent tables of assessment tools, their recommended uses and pitfalls, but would be improved by greater discussion of their use for infants. In addition, a description, based on published research (such as that by Hunt, McCallum, and Wolfe), of the epidemiology of symptoms in children living with life-threatening conditions would be well placed here. Increased discussion of pediatric-specific information, such as physiologic differences in drug-binding and metabolism in different phases of childhood
Marcia Levetown, MD is a pain and palliative care education consultant in Houston, Texas, USA. Dr. Levetown is also a Faculty Scholar of the Project on Death in America of the Open Society Institute.
Vol. 24 No. 6 December 2002
Book Reviews
and information about the epidemiology of pediatric disease also would be helpful. The prevention of procedure-related pain, promotion of parental competence to treat symptoms at home, and the importance of reassessment of symptoms after intervention deserve further emphasis. On the positive side, however, the chapter that addresses these issues appropriately validates the use of palliative care concurrently with life-prolonging measures. There are some assumptions regarding the level of expertise of the reader, such as explaining nociceptive and neuropathic pain and describing distraction and guided imagery, that may well have been appropriate for the book’s audience. The new chapter on Pediatric Hospice Nursing is quite disturbing. The final message seems to be that the nurse is there to protect the child from all other care providers and that he/she can do it all alone. This is not consistent with the model advocated in most settings, and seems to be counterproductive. The neonatal chapter is useful to remind the reader that palliative care for neonates, even in the NICU setting, is appropriate and doable. Unfortunately, several assertions, particularly regarding legal and ethical issues, are inaccurate. Continuing use of terms such as ordinary and extraordinary, rather than weighing the hoped-for benefit and expected burden of the therapy, as discussed in the ethics community and more usefully with families, is just one example. An overview of the important positive effect of sharing autopsy results with families is helpful. The chapter on pediatric AIDS is disappointing. While written by one of the most pre-eminent scholars and practitioners in the field, there is no discussion of the symptomatology specific to children with AIDS, nor the treatment of these symptoms. Instead, there is a discussion of the social milieu and psychosocial impact of death and HIV; the reader is confronted by pleas for change of societal values and the authors’ political opinions instead of immediately helpful information to care for such children.
623
In this first half of the book, Issues on Clinical Management, the writing is spotty and in need of significant editing. Some of the writing is confusing and distracting as well as repetitious. Chapters in the second half of the book, Support Systems, are more helpful. The chapters on caring for bereaved parents, for bereaved siblings, and on spiritual care are all well written and well referenced, with good practical suggestions. The staff support chapter provides clear delineation of the issues and many excellent suggestions for enhancing teamwork and interdisciplinary cooperation, as well as mentoring strategies and methods to prevent burnout. However, the resources needed to effect such solutions may be beyond the scope of most hospices, let alone other health care institutions. The Volunteer, School, and Therapeutic Play chapters are very practical and full of helpful references and resources. The Primary Care Physician chapter is a bit too idealized; although in a perfect world the role described could be filled, it seems unlikely that anyone in primary care would have the time and expertise to perform in such a manner. The chapter Lessons from Pediatrics for Palliative Care is interesting, but seems better placed in a book on care of adults. The Inpatient chapter is well done and the Ethics chapter is comprehensive, if a bit erudite compared to the rest of the volume. The final chapter on incorporating children into an adult program is excellent, covering many of the concerns that most hospices likely to serve children will have. The appendix of reading materials is very practical and helpful. In summary, Hospice Care for Children covers an important array of topics that are relevant to the multiple disciplines that provide palliative care. Much of the book is well-written and practical, but important gaps continue to exist. More attention to the practical issues for those unused to caring for children, and the conditions that are life-threatening in the pediatric age range, would improve this otherwise valuable book.