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

Abstract

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.

Optimizing breathlessness management in amyotrophic lateral sclerosis: insights from a comprehensive systematic review

“…Our review included two qualitative studies with interviews [ 20 , 21 ], one RCT [ 22 ], three cohort studies (two retrospective [ 23 , 24 ], one prospective [ 25 ]), and two comparative retrospective chart/registry studies [ 26 , 27 ]. The majority of articles originated from Europe, with contributions from the United Kingdom [ 20 , 21 ], Italy [ 22 ], Finland [ 23 ], Sweden [ 24 , 26 ], and France [ 25 ]. One article was from the United States of America [ 27 ].…”

“…In a retrospective registry study, Eljas Ahlberg et al compared 825 deceased ALS patients to 3300 deceased cancer patients, examining topics such as symptom assessment, prescription of as-needed drugs, and communication about the transition to end-of-life care [ 26 ].…”

Palliation, end of life care and ventilation withdrawal in neuromuscular disorders

“…Despite an expanding evidence-base on symptom management, patients with NMDs are likely to receive poorer symptom control at the end of life than those dying with cancer. 83 , 84 A recent qualitative study of bereaved carers demonstrated that unmanaged respiratory and psychological symptoms were frequently a significant cause of distress to both patients and their carers. 32 As discussed above, symptoms should be proactively addressed and reviewed regularly.…”

The Challenge: Equal Availability to Palliative Care According to Individual Need Regardless of Age, Diagnosis, Geographical Location, and Care Level

“…Older age decreased the probability of implementing appropriate palliative measures during the last week of life and involving a specialized palliative team [ 16 , 17 ]. Diagnosis seems also to be of importance as previous studies conclude that a patient who is dying of cancer is more likely to be offered palliative interventions than patients dying of amyotrophic lateral sclerosis [ 18 ], COPD [ 19 ], dementia [ 20 ], or stroke [ 21 ].…”