Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0027
M. Chan, K. Weingarten
The management of symptomatic anaemia, minor bleeding, and other rarer haematological symptoms in the palliative phase illustrates very well the challenging decisions that face professionals who are working with dying children. On the one hand, modern medical interventions have the capacity to relieve some of the symptoms that haematological abnormalities can cause. On the other hand, the interventions themselves carry morbidity and can cause not only symptoms related to physical reactions, but also often emotional and psychological issues related to otherwise avoidable hospital attendance. The ethical issues involved in subjecting a child—whose voice is often unheard—to treatments just because they are available should also be carefully considered. The best clinical decision can only be made by considering the needs of the individual child and their family, giving appropriate weight to the risks and potential benefits of giving an intervention, both physical and otherwise, and the risks and potential benefits of withholding it. In this respect, management of haematological symptoms is typical of thoughtful and skilled childhood palliative care in general.
{"title":"Haematological symptoms","authors":"M. Chan, K. Weingarten","doi":"10.1093/med/9780198821311.003.0027","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0027","url":null,"abstract":"The management of symptomatic anaemia, minor bleeding, and other rarer haematological symptoms in the palliative phase illustrates very well the challenging decisions that face professionals who are working with dying children. On the one hand, modern medical interventions have the capacity to relieve some of the symptoms that haematological abnormalities can cause. On the other hand, the interventions themselves carry morbidity and can cause not only symptoms related to physical reactions, but also often emotional and psychological issues related to otherwise avoidable hospital attendance. The ethical issues involved in subjecting a child—whose voice is often unheard—to treatments just because they are available should also be carefully considered. The best clinical decision can only be made by considering the needs of the individual child and their family, giving appropriate weight to the risks and potential benefits of giving an intervention, both physical and otherwise, and the risks and potential benefits of withholding it. In this respect, management of haematological symptoms is typical of thoughtful and skilled childhood palliative care in general.","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":"130230860","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 : 2012-05-24DOI: 10.1093/MED/9780199595105.003.0032
D. Davies
Caring for a child and his or her family during the last hours and days of the child’s life is emotionally charged, with inherent pressure to ‘get things right.’ Anticipation and treatment of the patient’s changing symptoms are essential to stave off emergency situations or, at least, to be optimally prepared to deal with them. Parents must be actively supported during this time, regardless of the setting, and the availability of professional assistance must be continuous, even if this can be only by telephone in some circumstances. Access to emergency medications must be anticipated in this context. Communication must be seamless, and care providers must be prepared for sudden changes in the desired setting of care. It is much easier to plan for every contingency, knowing that some plans will go unused, than to have to cobble together suboptimal arrangements at the last minute.
{"title":"Care in the final hours and days","authors":"D. Davies","doi":"10.1093/MED/9780199595105.003.0032","DOIUrl":"https://doi.org/10.1093/MED/9780199595105.003.0032","url":null,"abstract":"Caring for a child and his or her family during the last hours and days of the child’s life is emotionally charged, with inherent pressure to ‘get things right.’ Anticipation and treatment of the patient’s changing symptoms are essential to stave off emergency situations or, at least, to be optimally prepared to deal with them. Parents must be actively supported during this time, regardless of the setting, and the availability of professional assistance must be continuous, even if this can be only by telephone in some circumstances. Access to emergency medications must be anticipated in this context. Communication must be seamless, and care providers must be prepared for sudden changes in the desired setting of care. It is much easier to plan for every contingency, knowing that some plans will go unused, than to have to cobble together suboptimal arrangements at the last minute.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"15 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2012-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"131718465","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 : 2012-05-24DOI: 10.1093/MED/9780199595105.003.0026
J. Hauer, K. W. Faulkner
Conditions associated with the impaired nervous system are common in paediatric palliative care (PPC). And yet, many neurological conditions are themselves rare, thereby limiting knowledge about each condition and its expected course. Parents and providers often face significant uncertainty about the risks and benefits associated with treatment decisions as prognostic information and scientific evidence may be limited. Other challenges include difficult assessment for the presence and source of distressing symptoms and the lifelong nature of many of the symptoms these children experience. This chapter addresses several aspects of palliative care in the management of neurological and neuromuscular symptoms. The first section provides a palliative framework for addressing neurological and neuromuscular conditions and a brief overview of the major life-limiting conditions related to the nervous system. The second section reviews the associated symptoms of the impaired central nervous system (CNS) along with their treatment strategies. This chapter deliberately focuses on care for children with severe neurological impairment, as these children increasingly benefit from the specific expertise of palliative care teams.
{"title":"Neurological and neuromuscular conditions and symptoms","authors":"J. Hauer, K. W. Faulkner","doi":"10.1093/MED/9780199595105.003.0026","DOIUrl":"https://doi.org/10.1093/MED/9780199595105.003.0026","url":null,"abstract":"Conditions associated with the impaired nervous system are common in paediatric palliative care (PPC). And yet, many neurological conditions are themselves rare, thereby limiting knowledge about each condition and its expected course. Parents and providers often face significant uncertainty about the risks and benefits associated with treatment decisions as prognostic information and scientific evidence may be limited. Other challenges include difficult assessment for the presence and source of distressing symptoms and the lifelong nature of many of the symptoms these children experience. This chapter addresses several aspects of palliative care in the management of neurological and neuromuscular symptoms. The first section provides a palliative framework for addressing neurological and neuromuscular conditions and a brief overview of the major life-limiting conditions related to the nervous system. The second section reviews the associated symptoms of the impaired central nervous system (CNS) along with their treatment strategies. This chapter deliberately focuses on care for children with severe neurological impairment, as these children increasingly benefit from the specific expertise of palliative care teams.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"2013 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2012-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"129190736","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 : 2012-05-24DOI: 10.1093/med/9780199595105.003.0027
A. Muriel, R. McCulloch, J. Hammel
The assessment and treatment of psychological disorders such as depression, anxiety, and delirium can prove challenging in paediatric palliative care (PPC). Clinicians face the difficulties of distinguishing among symptoms of disease progression, medical side effects, and ‘normal’ psychological distress; the roles of cognitive and emotional development; and the lack of standardized assessment measures. Because research in this area is limited, recommendations often are extrapolated from adult palliative care (PC), or paediatric psychiatric or psychological literature in populations without life-threatening conditions. Patient- and family-centred care require that we address these symptoms, which may not meet clear diagnostic criteria, but significantly impair quality of life (QOL). Careful history taking, active listening, and close observation are essential in unearthing psychological symptoms. Collaboration with mental health professionals is recommended whenever possible, to provide specialist assessment and inform non-pharmacological and psychopharmacological treatment. Clinicians must incorporate limited data with clinical judgement and consultation to guide interventions that best reduce suffering and improve quality of life.
{"title":"Depression, anxiety, and delirium","authors":"A. Muriel, R. McCulloch, J. Hammel","doi":"10.1093/med/9780199595105.003.0027","DOIUrl":"https://doi.org/10.1093/med/9780199595105.003.0027","url":null,"abstract":"The assessment and treatment of psychological disorders such as depression, anxiety, and delirium can prove challenging in paediatric palliative care (PPC). Clinicians face the difficulties of distinguishing among symptoms of disease progression, medical side effects, and ‘normal’ psychological distress; the roles of cognitive and emotional development; and the lack of standardized assessment measures. Because research in this area is limited, recommendations often are extrapolated from adult palliative care (PC), or paediatric psychiatric or psychological literature in populations without life-threatening conditions. Patient- and family-centred care require that we address these symptoms, which may not meet clear diagnostic criteria, but significantly impair quality of life (QOL). Careful history taking, active listening, and close observation are essential in unearthing psychological symptoms. Collaboration with mental health professionals is recommended whenever possible, to provide specialist assessment and inform non-pharmacological and psychopharmacological treatment. Clinicians must incorporate limited data with clinical judgement and consultation to guide interventions that best reduce suffering and improve quality of life.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"22 10","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2012-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"131506012","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 : 2012-05-24DOI: 10.1093/MED/9780199595105.003.0018
A. Bioy, C. Wood
When caring for a child who is in pain in a palliative care setting, the extent and intensity of the physical components of pain represent only one of many important aspects that need to be considered. How does the child understand their pain? Are they afraid of the actual pain or the future pain? How do they interpret their disease? Can they control or cope with the pain? It is of fundamental importance not only to help the child to cope with their condition, but also to help them through the disease by building a trustworthy and interactive relationship between the patient, their family, and their peers. One must try to carefully monitor the child’s level of distress, their defense strategies, their coping strategies, and the attitudes and opportunities that they encounter in their environment (e.g. encouragement, active participation in activities). All of this takes place within a biopsychosocial and holistic model of care that ‘reflects modern society’s attempt to face up to the reality of death by introducing dying and bereavement into the midstream of life.’ It personalizes care by adopting a relationship-centered approach and, with the collaboration of all caregivers, it humanizes care. In this chapter we first explore the history of pain in medicine and then develop our actual knowledge about pain. Finally, we shall establish some guidelines for understanding and analyzing the complaint of the child in palliative care.
{"title":"Introduction to pain","authors":"A. Bioy, C. Wood","doi":"10.1093/MED/9780199595105.003.0018","DOIUrl":"https://doi.org/10.1093/MED/9780199595105.003.0018","url":null,"abstract":"When caring for a child who is in pain in a palliative care setting, the extent and intensity of the physical components of pain represent only one of many important aspects that need to be considered. How does the child understand their pain? Are they afraid of the actual pain or the future pain? How do they interpret their disease? Can they control or cope with the pain? It is of fundamental importance not only to help the child to cope with their condition, but also to help them through the disease by building a trustworthy and interactive relationship between the patient, their family, and their peers. One must try to carefully monitor the child’s level of distress, their defense strategies, their coping strategies, and the attitudes and opportunities that they encounter in their environment (e.g. encouragement, active participation in activities). All of this takes place within a biopsychosocial and holistic model of care that ‘reflects modern society’s attempt to face up to the reality of death by introducing dying and bereavement into the midstream of life.’ It personalizes care by adopting a relationship-centered approach and, with the collaboration of all caregivers, it humanizes care. In this chapter we first explore the history of pain in medicine and then develop our actual knowledge about pain. Finally, we shall establish some guidelines for understanding and analyzing the complaint of the child in palliative care.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"6 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2012-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"131388327","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 : 2012-05-24DOI: 10.1093/MED/9780199595105.003.0008
J. Aldridge, Barbara M. Sourkes
The children and families who speak in this chapter articulate concerns that are shared by many who are living with potentially life-shortening illnesses or conditions. They have all had to negotiate the changing, and often narrowing, of their world that the progressive losses that illness can bring and find ways to live with these changes and the ongoing uncertainty. The chapter explores how the availability of sensitive emotional support and psychological expertise throughout the course of the child’s and family`s journey can bring much comfort, ease suffering and distress, and even aspire to enable growth in the face of enormous challenge.
{"title":"The psychological impact of life-limiting conditions on the child","authors":"J. Aldridge, Barbara M. Sourkes","doi":"10.1093/MED/9780199595105.003.0008","DOIUrl":"https://doi.org/10.1093/MED/9780199595105.003.0008","url":null,"abstract":"The children and families who speak in this chapter articulate concerns that are shared by many who are living with potentially life-shortening illnesses or conditions. They have all had to negotiate the changing, and often narrowing, of their world that the progressive losses that illness can bring and find ways to live with these changes and the ongoing uncertainty. The chapter explores how the availability of sensitive emotional support and psychological expertise throughout the course of the child’s and family`s journey can bring much comfort, ease suffering and distress, and even aspire to enable growth in the face of enormous challenge.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"138 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2012-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"124288185","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 : 2012-05-24DOI: 10.1093/MED/9780199595105.003.0036
D. Papadatou
Caring for children who die may evoke suffering in healthcare professionals that is normal, healthy, and unavoidable. It is acknowledged when practitioners remain ‘vulnerable enough’ in their encounters with children and families and engage in an ongoing self- and team-reflective process their approaches work. In this chapter, a model that illuminates the grieving process of healthcare professionals is presented, along with the functional and dysfunctional patterns that teams develop to cope with the suffering of their own members in death situations. A systemic approach helps expand our understanding and underscores the responsibility of the organization’s leaders to cultivate a work culture which promotes self-care, compassion, learning, and collaboration.
{"title":"Healthcare providers’ responses to the death of a child","authors":"D. Papadatou","doi":"10.1093/MED/9780199595105.003.0036","DOIUrl":"https://doi.org/10.1093/MED/9780199595105.003.0036","url":null,"abstract":"Caring for children who die may evoke suffering in healthcare professionals that is normal, healthy, and unavoidable. It is acknowledged when practitioners remain ‘vulnerable enough’ in their encounters with children and families and engage in an ongoing self- and team-reflective process their approaches work. In this chapter, a model that illuminates the grieving process of healthcare professionals is presented, along with the functional and dysfunctional patterns that teams develop to cope with the suffering of their own members in death situations. A systemic approach helps expand our understanding and underscores the responsibility of the organization’s leaders to cultivate a work culture which promotes self-care, compassion, learning, and collaboration.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"42 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2012-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123278320","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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