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dc.contributor.authorFaull, Christina
dc.date.accessioned2022-03-18T08:37:48Z
dc.date.available2022-03-18T08:37:48Z
dc.date.issued2022
dc.identifier.citationPhelps, K., Regen, E., McDermott, C., Oliver, D., & Faull, C. (2022). Withdrawal of assisted ventilation at the patient's request in MND: A retrospective exploration of the ethical and legal issues concerning relatives, nurses and allied health care professionals. medRxiv, , 2022.03.14.22271768. doi:10.1101/2022.03.14.22271768en_US
dc.identifier.other10.1136/bmjspcare-2014-000826
dc.identifier.urihttp://hdl.handle.net/20.500.12904/15287
dc.description.abstractBackground There is little literature focusing on the issues relatives and health professionals encounter when withdrawing assisted ventilation at the request of a patient with MND/ALS. Aim To explore with relatives, nurses and allied health professionals the ethical and legal issues that they had encountered in the withdrawal of ventilation at the request of a patient with MND/ALS. Method A retrospective qualitative interview study with 17 family members and 26 professionals. Data was analysed thematically and compared with results from a previous study with doctors. Results The events surrounding ventilation withdrawal were extraordinarily memorable for both HCPs and family members with clear recall of explicit details, even from years previously. The events had had a profound and lasting effect due to the emotional intensity of the experiences. Withdrawal of ventilation posed legal, ethical and moral challenges for relatives and health are professionals. Relatives looked to health care professionals for knowledge, guidance and reassurance on these issues, worried about how the withdrawal would be perceived by others, and found professional ignorance and disagreement distressing. Many health care professionals lacked theoretical knowledge and confidence on the legal and ethical considerations of withdrawal and struggled morally knowing the outcome of the withdrawal would be death. Health care professionals also worried about the perception of others of their involvement, which in turn influenced their practice. There was a lack of consistency in understanding across professions, and professionals often felt uncomfortable and anxious Conclusions Legal, ethical and practical guidance is needed and open discussion of the ethical challenges as well as education and support for health care professionals and relatives would improve the experience of all involved.
dc.description.urihttps://spcare.bmj.com/content/7/2/189.longen_US
dc.subjectmotor neurone diseaseen_US
dc.subjectamyotrophic lateral sclerosisen_US
dc.subjectventilationen_US
dc.subjectethicsen_US
dc.subjectlegalen_US
dc.subjectwithdrawal of treatmenten_US
dc.subjectnursesen_US
dc.subjectallied health professionalsen_US
dc.subjectfamilyen_US
dc.subjectMNDen_US
dc.titleWithdrawal of assisted ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues concerning relatives, nurses and allied health care professionalsen_US
dc.typePreprinten_US
rioxxterms.funderDefault funderen_US
rioxxterms.identifier.projectDefault projecten_US
rioxxterms.versionNAen_US
rioxxterms.versionofrecordhttp://dx.doi.org/10.1136/bmjspcare-2014-000826en_US
rioxxterms.typeJournal Article/Reviewen_US
refterms.panelUnspecifieden_US
html.description.abstractBackground There is little literature focusing on the issues relatives and health professionals encounter when withdrawing assisted ventilation at the request of a patient with MND/ALS. Aim To explore with relatives, nurses and allied health professionals the ethical and legal issues that they had encountered in the withdrawal of ventilation at the request of a patient with MND/ALS. Method A retrospective qualitative interview study with 17 family members and 26 professionals. Data was analysed thematically and compared with results from a previous study with doctors. Results The events surrounding ventilation withdrawal were extraordinarily memorable for both HCPs and family members with clear recall of explicit details, even from years previously. The events had had a profound and lasting effect due to the emotional intensity of the experiences. Withdrawal of ventilation posed legal, ethical and moral challenges for relatives and health are professionals. Relatives looked to health care professionals for knowledge, guidance and reassurance on these issues, worried about how the withdrawal would be perceived by others, and found professional ignorance and disagreement distressing. Many health care professionals lacked theoretical knowledge and confidence on the legal and ethical considerations of withdrawal and struggled morally knowing the outcome of the withdrawal would be death. Health care professionals also worried about the perception of others of their involvement, which in turn influenced their practice. There was a lack of consistency in understanding across professions, and professionals often felt uncomfortable and anxious Conclusions Legal, ethical and practical guidance is needed and open discussion of the ethical challenges as well as education and support for health care professionals and relatives would improve the experience of all involved.en_US
rioxxterms.funder.project94a427429a5bcfef7dd04c33360d80cden_US


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