Table 1.

Characteristics of studies included in the scoping review.

First author	Title	Aim/s	Location/setting	Method/population	Data presented relevant to scoping review
Baxter et al. 27	The Use of Non-Invasive Ventilation at End of Life in Patients with Motor Neurone Disease: A Qualitative Exploration of Family Carer and Health Professional Experiences	To describe carer and healthcare professional experiences of end of life care of motor neurone disease patients using NIV.	UK. Motor neurone disease clinic within single hospital.	Qualitative. Longitudinal semi-structured interviews. Family carers (n = 9) and healthcare professionals (n = 15) who were closely involved in the final months of life of patients with motor neurone disease who were using NIV during the final phase of their disease.	Barriers to recognising dying. Speed of terminal decline.
Chaudri et al. 28	Patterns of Mortality in Patients with Motor Neurone Disease	To explore patterns of mortality in patients with motor neurone disease with an emphasis on place of death.	UK. Motor neurone disease clinic within single hospital.	Quantitative. Retrospective review of hospital and GP medical notes, and post-mortem reports. All patients (n = 179) at the clinic with probable or definite motor neurone disease who died between 1990 and 2000.	Cause of death. Place of death.
Daneau et al. 38	‘Intensive Palliative Care’: A Qualitative Study of Issues Related to Nurses’ Care of People with Amyotrophic Lateral Sclerosis at End-of-Life.	To explore the experience of nurses when caring for people with ALS at end-of-life. To explore the characteristics of nurses’ care of people with ALS at end-of-life. To identify the needs of nurses in providing quality care to people with ALS at the end-of-life.	Canada. Home care, hospitals and palliative care homes in Quebec.	Qualitative. Individual semi-structured interviews. Nurses (n = 24) from hospitals, home care and palliative care homes who had provided care for at least one person with ALS at the end of life in the last 12 months.	Barriers to recognising dying. Signs at end of life.
Eljas Ahlberg and Axelsson 30	End-of-Life Care in Amyotrophic Lateral Sclerosis: A Comparative Registry Study	To study whether the quality of end of life care in the last week of life for patients dying from ALS differed compared to patients dying from cancer. To learn more about the place of death for patients with ALS in Sweden.	Sweden. Used data from the Swedish Register for Palliative Care and the Swedish Cause of Death Register.	Quantitative. Retrospective comparative registry study. Patients (n = 825) who had an expected death, with ALS reported as the main cause of death in the SRPC database, and/or in the Swedish Cause-of-Death Register 2012–2016. Patients (n = 3300) with cancer reported as the main cause of death in the SRPC during the same period were chosen as controls.	Symptoms at end of life.
Lerum et al. 37	Unstable Terminality: Negotiating the Meaning of Chronicity and Terminality in Motor Neurone Disease	To explore the meaning of chronicity and terminality in MND.	Norway. Three sites, each consisting of a hospital and corresponding primary care.	Qualitative. Narrative and thematic interviews. Patients with motor neurone disease (n = 5) and their informal carers (n = 25). Healthcare professionals from primary (n = 18) and secondary (n = 17) care with experience looking after patients with motor neurone disease.	Barriers to recognising dying. Speed of terminal decline.
Neudert et al. 39	The Course of the Terminal Phase in Amyotrophic Lateral Sclerosis	Not explicitly stated; implies aim is to understand the natural course of death in patient with ALS.	UK and Germany. Motor neurone disease clinic in single German hospital, and single UK hospice.	Mixed methods. Retrospective analysis of patient records from German and UK hospitals. Structured interviews with relatives of patients recruited from the German hospital. Patients (n = 121) with motor neurone disease who died January 1995–March 1999 from motor neurone disease clinic list at German hospital, and caregivers who were present at the moment of death of for most of the 24 h before death. Patients (n = 50) with ALS who died between 1991 and 1999 who had been followed by the UK hospice.	Cause of death. Speed of terminal decline. Symptoms at end of life.
O’Brien et al. 29	Motor Neurone Disease: A Hospice Perspective	To describe and evaluate management of patients with motor neurone disease from a hospice perspective.	UK. Single hospice.	Quantitative. Retrospective review of medical and nursing notes. Patients (n = 124) with motor neurone disease cared for by the hospice January 1980–November 1990.	Cause of death. Speed of terminal decline.
Ozanne et al. 31	Symptom Relief During Last Week of Life in Neurological Disease	To investigate symptom prevalence, symptom relief and palliative care indicators in the last week of life.	Sweden. Used data from the Swedish Register for Palliative Care and the Swedish Cause of Death Register.	Quantitative. Retrospective comparative registry study. Patients aged 18 or over whose cause of death was ALS (n = 419), CNS tumour (n = 799) or other neurological disease (n = 1407) between January 2011 and December 2012.	Symptoms at end of life.
Ryan et al. 35	A Retrospective Review of Specialist Palliative Care Involvement in Motor Neurone Disease	To describe the demographic and clinical characteristics of motor neurone disease patients referred to hospice services for palliative care assessment. To collect peri-mortem data regarding these patients. To understand how these patients used the hospice services.	Republic of Ireland. Hospice services serving two areas of Dublin; comprising a home-care service, an inpatient service, a day hospice service and an outpatient service.	Quantitative. Retrospective review of clinical notes. All patients (n = 72) with a diagnosis of motor neurone disease that had their first palliative care assessment between 1/1/99 and 31/12/08.	Place of death.
Sennfält et al. 32	Dying from ALS in Sweden: Clinical Status, Setting, and Symptoms	To provide a comprehensive account of death in patients with ALS, including preceding clinical status, place of death and symptoms.	Sweden. Single hospital in Stockholm. Also used data from Swedish Motor Neurone Disease Quality Registry and Swedish Register of Palliative Care.	Quantitative. Review of patient medical records, the Swedish Motor Neuron Disease Quality Registry and the Swedish Quality Registry of Palliative Care. Two cohorts. Main cohort of patients (n = 93) diagnosed with ALS at study hospital 2016 onwards, deceased 2018–2020 and registered with the Swedish Motor Neurone Disease Quality Registry and the Swedish Quality Registry of Palliative Care. Secondary cohort of patients (n = 2224) diagnosed with ALS in any region of Sweden, that died 2011–2020 and registered with the Swedish Quality Registry of Palliative Care.	Place of death. Symptoms at end of life.
Tiirola et al. 36	End-of-Life Care of Patients with Amyotrophic Lateral Sclerosis and Other Nonmalignant Diseases	To explore the diagnoses, symptoms and treatment of patients dying in a hospice due to nonmalignant diseases, particularly ALS.	Finland. Single hospice.	Quantitative. Retrospective analysis of patient records. Patients (n = 67) with non-malignant diseases who died in the hospice 2004–2013, of which a proportion had ALS (n = 32).	Symptoms at end of life.
Ushikubo et al. 33	Illness Course and Circumstances of Death among Individuals with Rapidly Progressive Amyotrophic Lateral Sclerosis	To understand the illness course and circumstances of death in individuals with ALS who died within 1 year of starting home care.	Japan. Single home care nursing agency, and the neurology ward of a university hospital.	Mixed methods. Retrospective analysis of hospital patient records. Minimally structured interviews with nursing staff. Patients (n = 6) who were admitted to the neurology ward and diagnosed with ALS April 2009–March 2011, started homecare nursing and died within 1 year of leaving hospital. Nurses from the homecare nursing agencies providing care for these patients (n = 5). Nurses from the hospital discharge liaison team (n = 3).	Cause of terminal decline.
Ushikubo 34	Circumstances and Signs of Approaching Death in Patients with Amyotrophic Lateral Sclerosis Undergoing Noninvasive Ventilation in Home Care Settings	To ascertain the circumstances and symptoms of patients with ALS using NPPV approaching death, to understand how to provide palliative care to these patients.	Japan. Six home care nursing agencies within one region of Japan.	Qualitative. Individual and group semi-structured interviews. Home visiting nurses (n = 6) who were the head or subhead of nursing agencies with experience of caring for patients with ALS.	Barriers to recognising dying. Cause of terminal decline. Signs at end of life.