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Pain at end-of-life among patients with amyotrophic lateral sclerosis receiving noninvasive ventilation

Mitsuko Ushikubo

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The purpose of this study was to clarify aspects of pain before death among patients with amyotrophic lateral sclerosis (ALS) receiving noninvasive positive pressure ventilation (NPPV). The participant in this study was an excellent nurse manager. We conducted a semi-structured interview regarding three ALS patients who had been receiving NPPV during the last month before death. Data were analyzed using inductive qualitative analysis.The deceased ALS patients who had been receiving NPPV were two males and one female ranging in age between their 60s and 70s. The period from onset of ALS to death ranged from 18–31 months. The duration of NPPV use ranged from 1.5 months to 2 years. The following seven categories were extracted as aspects of patients’ pain: physical pain; anxiety about their children; regrets about life; pain from a bad family relationship; pain from strong pride; pain from fluctuating decision making about medical treatment for respiratory problems; and pain from not being able to express gratitude to others. Nurses and other health care professions should employ the concept of “total pain” and a community-integrated approach to provide palliative care to ALS patients receiving NPPV at end-of-life.

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