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

2020 ◽  
Author(s):  
Eva Eljas Ahlberg ◽  
Bertil Axelsson
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Registry Study ◽  
Lateral Sclerosis

scholarly journals Choosing the place of death: Empowering motor neurone disease/amyotrophic lateral sclerosis patients in end-of-life care decision making

2015 ◽  
Vol 29 (7) ◽  
pp. 667-668 ◽  
Author(s):  
Suresh Kumar Chhetri ◽  
Belinda Fay Bradley ◽  
Pauline Callagher ◽  
Robert Addison-Jones ◽  
Wendy Bennett ◽  
...  
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Place Of Death ◽  
Life Care ◽  
Care Decision ◽  
Lateral Sclerosis

End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis

2020 ◽  
pp. 026921632096728
Author(s):  
Sabrina Cipolletta ◽  
Margherita Reggiani
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Directives ◽  
Health Professionals ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Life Care ◽  
Advance Care ◽  
Lateral Sclerosis

Background: Advance care planning and advance directives play a key role in the care of life-threatening illnesses such as amyotrophic lateral sclerosis. Aim: The aim of the present study is to explore how the introduction of these features by law improves the experience of end-of-life care. Design: Five focus groups were conducted in Italy 1 year after the new law on advance directives was introduced. Setting/Participants: Purposive sampling was used to recruit 24 health professionals and 23 family caregivers of patients with amyotrophic lateral sclerosis, for a total of 47 participants. Results: The thematic analysis, conducted through the use of ATLAS.ti software, identified four thematic areas: best practices, managing difficulties, care relationships and proposals. The results indicated a lack of organization, collaboration and continuity on the part of healthcare services and professionals, a lack of information on palliative care, advance care planning, and advance directives. End-of-life care is often left to the good will of the individual professional. Difficulties can also derive from ethical dilemmas concerning end-of-life decision-making and from a lack of communication and relationships between health professionals, patients and their families. Conclusion: The introduction of advance directives by law has not been sufficient to improve end-of-life care. In order to make legal regulation effective, the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.

scholarly journals End of life care of persons with amyotrophic lateral sclerosis in hospice

2010 ◽  
Vol 5 (2) ◽  
pp. 137-144
Author(s):  
Shuichi Kato ◽  
Eisuke Ozawa ◽  
Munehiro Shimada ◽  
Jun Kurokawa ◽  
Takahito Nishida ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Lateral Sclerosis

scholarly journals Symptom Management and End-of-Life Care in Amyotrophic Lateral Sclerosis

2015 ◽  
Vol 33 (4) ◽  
pp. 889-908 ◽  
Author(s):  
Carlayne E. Jackson ◽  
April L. McVey ◽  
Stacy Rudnicki ◽  
Mazen M. Dimachkie ◽  
Richard J. Barohn
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
Symptom Management ◽  
End Of Life Care ◽  
Life Care ◽  
Lateral Sclerosis

End-of-Life Care of Patients With Amyotrophic Lateral Sclerosis and Other Nonmalignant Diseases

2016 ◽  
Vol 34 (2) ◽  
pp. 154-159 ◽  
Author(s):  
Anna Tiirola ◽  
Tarja Korhonen ◽  
Tiina Surakka ◽  
Juho T. Lehto
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
End Of Life Care ◽  
Respiratory Symptoms ◽  
Common Symptom ◽  
Life Care ◽  
Care Services ◽  
Ventilation Support ◽  
Palliative Care Services ◽  
Als Patients ◽  
Lateral Sclerosis

Background: Palliative care services extend to meet the needs of patients with nonmalignant diseases. Aim: To explore the diagnoses, symptoms, and treatment of patients dying in hospice due to nonmalignant diseases, with special emphasis on amyotrophic lateral sclerosis (ALS). Design: A retrospective study based on a detailed analysis of patient records. Setting/Participants: All patients with nonmalignant diseases who died in Pirkanmaa Hospice during the period 2004 to 2013 were included. Results: Of the 67 patients studied, 48% had ALS, and the remaining had pulmonary (18%), cardiovascular (13%), neurologic (10%), and other (10%) diseases. Dyspnea, followed by pain and fatigue, was the most common symptom reported, increasing in frequency from admission to the last day of life (31% vs 48%; P < .05). Compared with ALS, patients with other diseases had more comorbidities (3.8% vs 1.4%, P < .001) and were more likely to have very short (≤3 days) final care periods (31% vs 9%; P < .05). During the last day of life, patients with ALS were more frequently unable to swallow (87% vs 31%, P < .001) and received significantly more antidepressants, antibiotics, and laxatives but less corticosteroids and oxygen compared to other patients. Noninvasive ventilation was used in 31% of all patients. Conclusion: Respiratory symptoms are important in the management of nonmalignant diseases in hospice. Especially, units taking care of ALS should be prepared to meet the special needs involved in ventilation support. In contrast to ALS, late referrals to hospice are common in patients with other nonmalignant diseases.

scholarly journals End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer

PLoS ONE ◽  
2016 ◽  
Vol 11 (2) ◽  
pp. e0147694 ◽  
Author(s):  
Heléne Eriksson ◽  
Anna Milberg ◽  
Katarina Hjelm ◽  
Maria Friedrichsen
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Registry Study

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

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