End-of-Life Care in Adults with Cystic Fibrosis

Philip, Jennifer; Gold, Michelle; Sutherland, Sharon; Finlayson, F.; Ware, Claire; Braithwaite, M.; Harris, J. Irene; Kotsimbos, Tom; Wilson, John F.

doi:10.1089/jpm.2007.0106

Cited by 33 publications

(36 citation statements)

References 8 publications

(9 reference statements)

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“…Hope is therefore maintained through periods of silence, allowing patients to circumvent information that may diminish hope. Whilst patients want to know more about end of life, few had actually initiated it [4,12]. The staff found themselves colluding with patients' positivity which hindered communication.…”

Section: Discussionmentioning

confidence: 99%

“…Those with non-malignant disease have been described, however, as the "disadvantaged dying" [3] as they frequently are not referred to palliative care services [4,5] and may benefit from better resourced palliative care. There has been limited attention exploring the palliative care and psychosocial needs of adults with non-malignant disease facing end of life.…”

Section: Introductionmentioning

confidence: 99%

“…In a large centre with multidisciplinary teams and evidence-based guideline management, most patients can expect to live beyond 30 years of age [4].…”

Section: Introductionmentioning

confidence: 99%

“…These include a lack of consistent clinical staging to predict morbidity and survival, uncertainty of eventual lung transplantation, recovery from repeated acute exacerbations and poor recognition of the terminal phase of illness [4,6]. The unpredictability of future outcomes can be associated with psychological distress, anxiety, and depression, which in turn adds to the complexity of palliative care provision [7].…”

Section: Introductionmentioning

confidence: 99%

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End of life care in CF: Patients, families and staff experiences and unmet needs

Braithwaite

Philip

Tranberg

et al. 2011

Journal of Cystic Fibrosis

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…In a large centre with multidisciplinary teams and evidence-based guideline management, most patients can expect to live beyond 30 years of age [4].…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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End of life care in CF: Patients, families and staff experiences and unmet needs

Braithwaite

Philip

Tranberg

et al. 2011

Journal of Cystic Fibrosis

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“…Integration of a palliative care approach with hematopoietic stem cell or solid organ transplantation has been recently proposed. [40][41][42] Song et al have found that barriers to integrating palliative care with lung transplantation include providers' misconceptions that palliative care is equivalent to EOL care, difficulty in discussing palliative care with families, and uncertainty about prognosis. 43 Pediatricians and nurses report similar barriers to the provision of pediatric palliative care in ICU and non-ICU settings, including prognostic uncertainty.…”

Section: Discussionmentioning

confidence: 99%

End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care

Ullrich

Dussel

Hilden

et al. 2010

Blood

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The end-of-life (EOL) experience of children who undergo stem cell transplantation (SCT) may differ from that of other children with cancer. To evaluate perspectives and patterns of EOL care after SCT, we surveyed 141 parents of children who died of cancer (response rate, 64%) and their physicians. Chart review provided additional information. Children for whom SCT was the last cancer therapy (n ‫؍‬ 31) were compared with those for whom it was not (n ‫؍‬ 110). SCT parents and physicians recognized no realistic chance for cure later than non-SCT peers (both P < .001) and were more likely to have a primary goal of cure at death (parents, P < .001; physicians, P ‫؍‬ .02). SCT children were more likely to suffer highly from their last cancer therapy and die in the intensive care unit (both P < .001), with less opportunity for EOL preparation. SCT parents who recognized no realistic chance for cure more than 7 days before death along with the physician were more likely to prepare for EOL, and if their primary goal was to reduce suffering, to achieve this (P < .001). SCT is associated with significant suffering and less opportunity to prepare for EOL. Children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals, and opportunities to maximize quality of life. (Blood.

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Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis

Friedman

Linnemann

Altstein

et al. 2019

Pediatric Pulmonology

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Background: Despite the significant impact of chronic symptoms on quality of life with cystic fibrosis (CF), the role of palliative care in management of this disease is not well defined. The coping, goal assessment, and relief from evolving CF symptoms (CF-CARES) model is a primary palliative care intervention designed to provide chronic symptom management at all stages of the disease. The goal of this pilot study was to estimate the effectiveness of the CF-CARES intervention on improving chronic symptoms and quality of life for people living with CF. Methods: A structured assessment was used to guide referral to supportive services intended to address burdensome symptoms. Follow-up assessments were performed approximately 3 and 6 months later. Longitudinal regression analyses of changes in symptoms and quality of life were performed for all participants regardless of utilization of supportive services. Subgroup analyses were performed for subjects participating in mental health and alternative health services. Results: Forty-one subjects completed assessment and referral processes. The mean number of CF-associated symptoms decreased over time, as did respiratory symptom-related distress and depressive symptoms. Subjects utilizing alternative health services reported less psychological distress at follow-up. Among subjects with severe disease, mental health, and quality of life improved, especially for those using mental health services. Conclusions: The CF-CARES model resulted in significant mental health and quality-oflife benefits, suggesting the value of integrating symptom management interventions Pediatric Pulmonology. 2019;54:984-992. wileyonlinelibrary.com/journal/ppul 984 | Questionnaire 9-item scale; ppFEV 1 , percent predicted forced expiratory volume in 1 second; QoL, quality of life. Moskowitz and Yonker have contributed equally to this work.

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End-of-Life Care in Adults with Cystic Fibrosis

Cited by 33 publications

References 8 publications

End of life care in CF: Patients, families and staff experiences and unmet needs

End of life care in CF: Patients, families and staff experiences and unmet needs

End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care

Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis

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