End‐of‐life care in amyotrophic lateral sclerosis: A comparative registry study

Background Amyotrophic lateral sclerosis (ALS) is a fatal disease requiring palliative care. End-of-life care has been well studied in patients with incurable cancer, but less is known about the quality of such care for patients with ALS. Aim To study whether the quality of end-of-life care the last week in life for patients dying from ALS differed compared to patients with cancer in terms of registered symptoms, symptom management, and communication. Design This retrospective comparative registry study used data from the Swedish Registry of Palliative Care for 2012–2016. Each patient with ALS (n = 825) was matched to 4 patients with cancer (n = 3,300). Results Between-group differences in assessments for pain and other symptoms were significant (p < 0.01), and patients with ALS had fewer as-needed injection drugs prescribed than patients with cancer. Patients with ALS also had dyspnea and anxiety significantly more often than patients with cancer. There was no significant difference in communication about transition to end-of-life care between the two groups. Patients dying from ALS received artificial nutrition on their last day of life significantly more often than patients with cancer. Conclusions The results indicate that patients with ALS receive poorer end-of-life care than patients dying from cancer in terms of validated symptom assessments, prescription of as-needed drugs, and timely cessation of artificial nutrition. Educational efforts seem needed to facilitate equal care of dying patients, regardless of diagnosis.