Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0014
D. Rajapakse, Margaret Comac
The aims of this chapter are to discuss the prevalence of symptoms in paediatric palliative care, the importance of accurate symptom assessment, as well as the principles of and challenges to assessing symptoms comprehensively. We examine the areas where knowledge and expertise are lacking and the reasons for this. Finally, we discuss novel approaches to assessing symptoms and discuss areas for future study. In 2018 the World Health Organization published a guidance document for healthcare workers delivering paediatric palliative care in which it describes ‘the medical and moral necessity of making palliative care accessible to all children in need and their families’.
{"title":"Overview of symptoms and their assessment in life-limiting illness","authors":"D. Rajapakse, Margaret Comac","doi":"10.1093/med/9780198821311.003.0014","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0014","url":null,"abstract":"The aims of this chapter are to discuss the prevalence of symptoms in paediatric palliative care, the importance of accurate symptom assessment, as well as the principles of and challenges to assessing symptoms comprehensively. We examine the areas where knowledge and expertise are lacking and the reasons for this. Finally, we discuss novel approaches to assessing symptoms and discuss areas for future study. In 2018 the World Health Organization published a guidance document for healthcare workers delivering paediatric palliative care in which it describes ‘the medical and moral necessity of making palliative care accessible to all children in need and their families’.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"34 4","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"120926045","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0030
B. Carter
The goals of intensive care and palliative care teams may at first seem to be polar opposites. The one focuses on advanced technologies directed towards saving or prolonging life, while the other focuses on providing comfort and support, accepting death as a likely outcome. In caring for patients in the paediatric intensive care unit (PICU), however, those two teams are brought into a close working relationship. PCIU provides a natural interface for these teams with different goals. Here children and families face potential or inevitable death, and alongside attempts to save or prolong life, they need access to the kind of care that is at the heart of palliation. Where PICU and palliative care meet, children can receive the most advanced technology alongside skilled, holistic, supportive care, and both teams can work together with families to facilitate appropriate support as goals change. Palliative care is not a separate or different approach, but a continuation of the philosophy that medicine must only intervene in ways that will do more good than harm. Palliative care continues to be integrated into the care of patients and families in both the neonatal and PICU settings. With focused research aimed at healthcare service delivery, effective symptom management, and the role of palliative care consultants in the PICU, the potential to broaden and improve palliative care in the PICU will be further advanced for all children and their families. The surprise is not that these two services should be integrated, but rather that it has taken us so long to realize the importance of such integration.
{"title":"Intensive care units","authors":"B. Carter","doi":"10.1093/med/9780198821311.003.0030","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0030","url":null,"abstract":"The goals of intensive care and palliative care teams may at first seem to be polar opposites. The one focuses on advanced technologies directed towards saving or prolonging life, while the other focuses on providing comfort and support, accepting death as a likely outcome. In caring for patients in the paediatric intensive care unit (PICU), however, those two teams are brought into a close working relationship. PCIU provides a natural interface for these teams with different goals. Here children and families face potential or inevitable death, and alongside attempts to save or prolong life, they need access to the kind of care that is at the heart of palliation. Where PICU and palliative care meet, children can receive the most advanced technology alongside skilled, holistic, supportive care, and both teams can work together with families to facilitate appropriate support as goals change. Palliative care is not a separate or different approach, but a continuation of the philosophy that medicine must only intervene in ways that will do more good than harm. Palliative care continues to be integrated into the care of patients and families in both the neonatal and PICU settings. With focused research aimed at healthcare service delivery, effective symptom management, and the role of palliative care consultants in the PICU, the potential to broaden and improve palliative care in the PICU will be further advanced for all children and their families. The surprise is not that these two services should be integrated, but rather that it has taken us so long to realize the importance of such integration.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"31 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130337888","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0011
S. Boucher
Every child has the right to an education. Children with life-limiting illnesses or conditions aspire to normality and will often express a strong desire to return to school or continue their education, despite probable limitations. This chapter looks at how education can be offered to children with a life-limiting diagnosis and suggests how mainstream schools can work collaboratively with the child and the family to integrate or reintegrate them into their school programme. Information is provided on ways in which the school can manage risks, protect the child, and play a pivotal role in the provision of holistic and ongoing support. It also considers the need for in-depth planning and training for school staff in order to achieve safe reintegration and what must be done to provide support to siblings, classmates, and educators while the child attends school and during bereavement, should the child die.
{"title":"Education and school","authors":"S. Boucher","doi":"10.1093/med/9780198821311.003.0011","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0011","url":null,"abstract":"Every child has the right to an education. Children with life-limiting illnesses or conditions aspire to normality and will often express a strong desire to return to school or continue their education, despite probable limitations. This chapter looks at how education can be offered to children with a life-limiting diagnosis and suggests how mainstream schools can work collaboratively with the child and the family to integrate or reintegrate them into their school programme. Information is provided on ways in which the school can manage risks, protect the child, and play a pivotal role in the provision of holistic and ongoing support. It also considers the need for in-depth planning and training for school staff in order to achieve safe reintegration and what must be done to provide support to siblings, classmates, and educators while the child attends school and during bereavement, should the child die.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130668798","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0037
S. Blacker, R. Thienprayoon
Emphasis on quality improvement (QI) can facilitate the dissemination of palliative care practices within the healthcare system. The opportunities for advancing the quality agenda in paediatric palliative care are significant. Research, evidence-based practice, and QI are necessary to transform knowledge into improved care for the unique population of children and families who receive palliative care. Barriers to implementation of QI need to be understood, and strategies need to be implemented, including ensuring adequate funding, and education, in order to provide the highest quality palliative and hospice care to children and their families.
{"title":"Quality improvement in paediatric hospice and palliative care","authors":"S. Blacker, R. Thienprayoon","doi":"10.1093/med/9780198821311.003.0037","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0037","url":null,"abstract":"Emphasis on quality improvement (QI) can facilitate the dissemination of palliative care practices within the healthcare system. The opportunities for advancing the quality agenda in paediatric palliative care are significant. Research, evidence-based practice, and QI are necessary to transform knowledge into improved care for the unique population of children and families who receive palliative care. Barriers to implementation of QI need to be understood, and strategies need to be implemented, including ensuring adequate funding, and education, in order to provide the highest quality palliative and hospice care to children and their families.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"26 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"127792526","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0022
S. Mahant, M. Meiring, A. Rapoport
Feeding a child is considered basic care. As such, when a medical condition impacts a child’s desire or ability to feed and grow, the concerns and negative feelings experienced by the family can be profound. This chapter reviews strategies to promote safe feeding in children, especially those with underlying neurological impairment, in an effort to optimize growth and overall quality of life. The indications and challenges with enterostomy tubes and total parental nutrition (TPN) are also discussed. The concept of ‘feeding for comfort’ at the end of life in children who no longer desire to feed or when feeding causes suffering are explored, as well as the medical and psychosocial interventions to address anorexia and cachexia. Lastly, while the authors wholeheartedly support steps to rectify global malnutrition, a palliative care approach is provided to this problem which continues to result in chronic morbidity and mortality in millions of children annually.
{"title":"Feeding, cachexia, and malnutrition in children’s palliative care","authors":"S. Mahant, M. Meiring, A. Rapoport","doi":"10.1093/med/9780198821311.003.0022","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0022","url":null,"abstract":"Feeding a child is considered basic care. As such, when a medical condition impacts a child’s desire or ability to feed and grow, the concerns and negative feelings experienced by the family can be profound. This chapter reviews strategies to promote safe feeding in children, especially those with underlying neurological impairment, in an effort to optimize growth and overall quality of life. The indications and challenges with enterostomy tubes and total parental nutrition (TPN) are also discussed. The concept of ‘feeding for comfort’ at the end of life in children who no longer desire to feed or when feeding causes suffering are explored, as well as the medical and psychosocial interventions to address anorexia and cachexia. Lastly, while the authors wholeheartedly support steps to rectify global malnutrition, a palliative care approach is provided to this problem which continues to result in chronic morbidity and mortality in millions of children annually.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"11 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130818137","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0004
M. Bluebond-Langner, R. Langner
Support in decision-making is a key part of paediatric palliative care (PPC). In this chapter, we explore some of the salient features of decision-making for seriously ill children and young people (CYP) with life-limiting or life-threatening illnesses and reflect on their implications for clinical practice. We begin with a discussion of two fundamental aspects of decision-making: defining the problem that the decision maker faces and eliciting preferences, goals, and values. We consider what each of the stakeholders—clinician, parent, patient—bring to the decision-making process and their roles in the process. We also address some of the problems and conflicts that can arise and practical approaches to resolving them.
{"title":"Decision-making with children, young people, and parents","authors":"M. Bluebond-Langner, R. Langner","doi":"10.1093/med/9780198821311.003.0004","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0004","url":null,"abstract":"Support in decision-making is a key part of paediatric palliative care (PPC). In this chapter, we explore some of the salient features of decision-making for seriously ill children and young people (CYP) with life-limiting or life-threatening illnesses and reflect on their implications for clinical practice. We begin with a discussion of two fundamental aspects of decision-making: defining the problem that the decision maker faces and eliciting preferences, goals, and values. We consider what each of the stakeholders—clinician, parent, patient—bring to the decision-making process and their roles in the process. We also address some of the problems and conflicts that can arise and practical approaches to resolving them.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"66 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128919064","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0029
Á. Laoire, D. Nuzum, M. O'Reilly, Marie Twomey, K. O’Donoghue, M. Devins
Perinatal palliative care (PNPC) is a holistic multidisciplinary model of care for both baby and family in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialized support to families from diagnosis through to birth, death, and bereavement. This chapter aims to address the challenging clinical, ethical, and practical issues specific to perinatal palliative care. It describes antenatal life-limiting diagnoses, the role of anticipatory bereavement care, a palliative care approach to pregnancy, and outlines the complex planning and models of care required to optimally provide for the baby, mother, and family throughout. This chapter ultimately aims to provide management strategies to guide multidisciplinary teams (MDT) to deliver high-quality PNPC to the family as a whole.
{"title":"Perinatal palliative care","authors":"Á. Laoire, D. Nuzum, M. O'Reilly, Marie Twomey, K. O’Donoghue, M. Devins","doi":"10.1093/med/9780198821311.003.0029","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0029","url":null,"abstract":"Perinatal palliative care (PNPC) is a holistic multidisciplinary model of care for both baby and family in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialized support to families from diagnosis through to birth, death, and bereavement. This chapter aims to address the challenging clinical, ethical, and practical issues specific to perinatal palliative care. It describes antenatal life-limiting diagnoses, the role of anticipatory bereavement care, a palliative care approach to pregnancy, and outlines the complex planning and models of care required to optimally provide for the baby, mother, and family throughout. This chapter ultimately aims to provide management strategies to guide multidisciplinary teams (MDT) to deliver high-quality PNPC to the family as a whole.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"114 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115452428","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0020
D. Steinhorn
Palliative care and integrative medicine (IM) share many of the same goals of alleviating suffering, restoring wholeness, enhancing resiliency in the face of health challenges, and optimizing opportunities for personal growth and healing. Integrative approaches often contribute a sense of peace and wholeness that cannot be achieved with pharmacologic means alone. A range of integrative modalities is discussed in this chapter, which fit well with paediatric palliative care medicine in developed countries, as a complement to conventional medical efforts to cure disease or thwart its progression and reduce suffering. They also play an important role in many of the countries in the world, where less access to conventional Western medical care is available.
{"title":"Integrative approach to pain and other symptoms","authors":"D. Steinhorn","doi":"10.1093/med/9780198821311.003.0020","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0020","url":null,"abstract":"Palliative care and integrative medicine (IM) share many of the same goals of alleviating suffering, restoring wholeness, enhancing resiliency in the face of health challenges, and optimizing opportunities for personal growth and healing. Integrative approaches often contribute a sense of peace and wholeness that cannot be achieved with pharmacologic means alone. A range of integrative modalities is discussed in this chapter, which fit well with paediatric palliative care medicine in developed countries, as a complement to conventional medical efforts to cure disease or thwart its progression and reduce suffering. They also play an important role in many of the countries in the world, where less access to conventional Western medical care is available.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"15 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130453819","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0025
E. Harrop, Roxanne E Kirsch
Cardiorespiratory symptoms are important in paediatric palliative care, affecting those with cancer as well as children with non-oncological life-limiting illnesses. Breathing is not only a vital function; it also often acts as a barometer of a person’s overall comfort. Breathlessness, often the end point of both cardiac and respiratory compromise, is invariably listed among the most distressing of symptoms. A multimodal approach to treating discomfort related to cardiorespiratory compromise, is essential, allowing for the physical, psychological, social, and spiritual dimensions of the symptoms. The range of possible treatments available continues to expand, encompassing everything from simple non-pharmacological measures to long-term mechanical support of respiratory or cardiac function. This chapter will outline a holistic approach to managing cardiorespiratory symptoms in the child, providing excellent palliative care, where improving quality of life is a primary focus.
{"title":"Cardiorespiratory symptoms","authors":"E. Harrop, Roxanne E Kirsch","doi":"10.1093/med/9780198821311.003.0025","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0025","url":null,"abstract":"Cardiorespiratory symptoms are important in paediatric palliative care, affecting those with cancer as well as children with non-oncological life-limiting illnesses. Breathing is not only a vital function; it also often acts as a barometer of a person’s overall comfort. Breathlessness, often the end point of both cardiac and respiratory compromise, is invariably listed among the most distressing of symptoms. A multimodal approach to treating discomfort related to cardiorespiratory compromise, is essential, allowing for the physical, psychological, social, and spiritual dimensions of the symptoms. The range of possible treatments available continues to expand, encompassing everything from simple non-pharmacological measures to long-term mechanical support of respiratory or cardiac function. This chapter will outline a holistic approach to managing cardiorespiratory symptoms in the child, providing excellent palliative care, where improving quality of life is a primary focus.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"48 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"127595154","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0021
J. Laddie, A. Terblanche, M. Meiring
The gastro-intestinal tract (GIT) is a complex and essential organ that is the source of much distress from several and varied causes in palliative care. These causes include diseases of the gastro-intestinal system itself, and virtually every other system in the body. Medications used to treat underlying diseases (esp. cancer and human immunodeficiency virus (HIV)) often cause GIT side effects and even drugs used for palliation (esp. opioids) are often culprits. This chapter covers the management of common GIT symptoms and also discusses palliative care for children with intestinal failure and liver disease that were not covered in the last edition of this textbook.
{"title":"Gastrointestinal and liver-related symptoms in paediatric palliative care","authors":"J. Laddie, A. Terblanche, M. Meiring","doi":"10.1093/med/9780198821311.003.0021","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0021","url":null,"abstract":"The gastro-intestinal tract (GIT) is a complex and essential organ that is the source of much distress from several and varied causes in palliative care. These causes include diseases of the gastro-intestinal system itself, and virtually every other system in the body. Medications used to treat underlying diseases (esp. cancer and human immunodeficiency virus (HIV)) often cause GIT side effects and even drugs used for palliation (esp. opioids) are often culprits. This chapter covers the management of common GIT symptoms and also discusses palliative care for children with intestinal failure and liver disease that were not covered in the last edition of this textbook.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"42 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"127681618","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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