The final month of life in patients with ALS

Linda Ganzini, Wendy S. Johnston, Maria J. Silveira

    Research output: Contribution to journalArticle

    97 Citations (Scopus)

    Abstract

    Objective: To study the health care experiences and palliative care needs of patients with ALS in their final month of life. Methods: Caregivers of decedent patients with ALS completed a single survey focused on the final month of life. They reported the patients' physical and emotional symptoms, preferences for end-of-life care, completion of advance directives, and preparation for death. The caregiver reported which life-sustaining treatments were administered, withheld, or withdrawn; whether the patient was enrolled in hospice; and their own satisfaction with the patient's medical care. Results: Fifty caregivers completed the survey. Caregivers reported that the most common symptoms in the last month of life included difficulty communicating (62%), dyspnea (56%), insomnia (42%), and discomfort other than pain (48%). Pain was both frequent and severe. One-third of caregivers were dissatisfied with some aspect of symptom management. Caregivers reported an advance directive was completed by 88% of patients and the patients' goals of care were honored by 88% of health care practitioners. Two-thirds of patients were enrolled in hospice. Compared to nonhospice patients, hospice patients were significantly more likely to: 1) die in their preferred location; 2) die outside the hospital; and 3) receive morphine. Most caregivers reported that their loved one was at peace, and prepared for and was accepting of death. Conclusions: Caregivers report that many patients with ALS still experience distressing physical symptoms in the last month of life, despite enrollment in hospice. Most patients with ALS, however, anticipate and plan for their deaths and have their wishes respected.

    Original languageEnglish (US)
    Pages (from-to)428-431
    Number of pages4
    JournalNeurology
    Volume59
    Issue number3
    StatePublished - Aug 13 2002

    Fingerprint

    Caregivers
    Hospices
    Advance Directives
    Patient Care
    Patient Care Planning
    Delivery of Health Care
    Pain
    Terminal Care
    Sleep Initiation and Maintenance Disorders
    Palliative Care
    Dyspnea
    Morphine

    ASJC Scopus subject areas

    • Neuroscience(all)

    Cite this

    Ganzini, L., Johnston, W. S., & Silveira, M. J. (2002). The final month of life in patients with ALS. Neurology, 59(3), 428-431.

    The final month of life in patients with ALS. / Ganzini, Linda; Johnston, Wendy S.; Silveira, Maria J.

    In: Neurology, Vol. 59, No. 3, 13.08.2002, p. 428-431.

    Research output: Contribution to journalArticle

    Ganzini, L, Johnston, WS & Silveira, MJ 2002, 'The final month of life in patients with ALS', Neurology, vol. 59, no. 3, pp. 428-431.
    Ganzini L, Johnston WS, Silveira MJ. The final month of life in patients with ALS. Neurology. 2002 Aug 13;59(3):428-431.
    Ganzini, Linda ; Johnston, Wendy S. ; Silveira, Maria J. / The final month of life in patients with ALS. In: Neurology. 2002 ; Vol. 59, No. 3. pp. 428-431.
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