Dying from ALS in Sweden: clinical status, setting, and symptoms

Abstract

Objectives

This retrospective cohort study aims to provide a comprehensive account of death in Swedish patients with ALS, including clinical status preceding death, the death setting, as well as symptoms.

Methods

The study presents detailed information on a cohort of patients with ALS from Stockholm, Sweden, deceased in 2018–2020. In addition, selected information is presented on a larger complementary cohort of ALS patients from all regions of Sweden deceased in 2011–2020. Data were obtained from patient medical records, the Swedish Motor Neuron Disease Quality Registry, and the Swedish Quality Registry of Palliative Care.

Results

Ninety-three patients were included in the main cohort and 2224 patients in the complementary cohort. In the main cohort, there was a slow decline in weight and motor function during the 12 months preceding death. Most (93.4%) anticipated/prolonged deaths occurred in a palliative care unit, at home, or in an assisted living facility while 44.8% of precipitous deaths occurred in a hospital ward. Next of kin or health care staff were present at death for most patients (78.7%). In the final week of life, 41.1% experienced at least one symptom (either pain, anxiety, confusion, or dyspnea) that was only partially relieved or not at all.

Conclusion

The majority of patients died in their own homes or at a palliative unit in the presence of next of kin and most symptoms were adequately managed. This paper might be used in educating patients, next of kin as well as health professionals, decreasing uncertainty surrounding the end of life.

Keywords:

• ALS
• death
• palliation

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Data availability statement

The study is based on data from the Swedish Motor Neuron Disease Quality Registry and the Swedish Quality Registry of Palliative Care. Having obtained the appropriate approval from a research ethics board, these data can be accessed from the registry offices upon request. Data obtained from medical records can be accessed from the principal author upon request after obtaining the appropriate ethics board approval.

Additional information

Funding

This study was supported by Bjorklunds Fund, the Ulla-Carin Lindquist Foundation, Neuro Sweden, and Konung Gustaf V:s och Drottning Victorias Frimurarestiftelse.