scholarly journals Literature Review of Palliative End-of-Life Care for Patients with Amyotrophic Lateral Sclerosis under Non-invasive Positive-pressure Ventilation

2017 ◽  
Vol 67 (1) ◽  
pp. 55-62 ◽  
Author(s):  
Mitsuko Ushikubo ◽  
Mitsue Iida ◽  
Miyuki Suzuki ◽  
Kyoko Sasaki
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Literature Review ◽  
End Of Life ◽  
End Of Life Care ◽  
Positive Pressure Ventilation ◽  
Positive Pressure ◽  
Life Care ◽  
Non Invasive ◽  
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
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