Death after cessation of treatment by cystic fibrosis patients: An international survey of clinicians

Pisaturo, Marisa; Deppen, Alain; Rochat, Isabelle; Robinson, Walter M.; Hafen, Gaudenz

doi:10.1177/0269216316637773

Cited by 4 publications

(1 citation statement)

References 24 publications

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“…13,16 As with other diseases, the failure to integrate palliative care into a holistic approach to CF care may lead to potentially inappropriate use of aggressive lifesustaining treatments before death 17,18 and the use of treatments that may not be desired by fully informed patients. 19 Because of certain unique aspects of CF, including the age of the population and the lifelong nature of their illness, we hypothesized that existing models for delivering palliative care for patients with serious illness might not be appropriate. 8,10 Therefore, we undertook a mixed-methods study of patients with moderate to severe CF to understand patients' perspectives on their palliative care needs and explore ways to meet those needs.…”

Section: Introductionmentioning

confidence: 99%

Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs

Hobler

Engelberg

Curtis

et al. 2018

Journal of Palliative Medicine

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Section: Introductionmentioning

confidence: 99%

Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs

Hobler

Engelberg

Curtis

et al. 2018

Journal of Palliative Medicine

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Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members

Trandel

Kavalieratos

Basile

et al. 2020

Pediatric Pulmonology

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BackgroundThe role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams.MethodsCF care team members (“clinicians”), adults with CF (“patients”), and family caregivers (“caregivers”) rated the ability of CF clinicians to provide aspects of PC using a five‐point scale (“poor” to “excellent”). Median ratings were compared between groups.ResultsA total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as “very good” at basic pain assessment and “good” at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P < .0001), basic depression assessment (P < .001), and discussing transplant, advance directives, end of life, code status, and hospice (all P < .0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P < .001), end of life (P = .006), advance directives (P < .001), code status (P = .012), and hospice (P = .016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training.ConclusionsDiscrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians’ more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.

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Cystic Fibrosis

Bourke¹,

Quibell²

2019

Integrated Palliative Care of Respiratory Disease

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Death after cessation of treatment by cystic fibrosis patients: An international survey of clinicians

Abstract: Death of cystic fibrosis patients, not considered to be terminally ill, is reported in Europe, the United States and Australia due to voluntary cessation of treatment.

Cited by 4 publications

References 24 publications

Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs

Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs

Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members

Cystic Fibrosis

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