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    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

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    Author
    Faull, Christina
    Keyword
    motor neurone disease
    amyotrophic lateral sclerosis
    ventilation
    ethics
    legal
    withdrawal of treatment
    nurses
    allied health professionals
    family
    MND
    Date
    2022
    
    Metadata
    Show full item record
    Publisher's URL
    https://www.medrxiv.org/content/10.1101/2022.03.14.22271768v1.full.pdf
    Abstract
    Background 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.
    Citation
    Phelps, 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:10.1101/2022.03.14.22271768
    Type
    Preprint
    URI
    http://hdl.handle.net/20.500.12904/15287
    Collections
    Palliative Care

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