Conflicts of Interest: experiences of close relatives of patients suffering from amyotrophic lateral sclerosis

2003 ◽  
Vol 10 (2) ◽  
pp. 186-198 ◽  
Author(s):  
Ingrid Bolmsjö ◽  
Göran Hermerén
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
Emotional Distress ◽  
Conflicts Of Interest ◽  
Terminally Ill ◽  
Shared Decision ◽  
Ethical Problems ◽  
Limited Support ◽  
Close Relatives ◽  
Lateral Sclerosis

It is well known that close relatives of terminally ill patients endure great emotional stress. Many factors, such as existential concerns, contribute to the distress of these relatives. In this study, interviews were conducted to explore experiences concerning life restrictions, emotional distress, and limited support, in a group of close relatives of patients with amyotrophic lateral sclerosis (ALS). The purpose was to identify, illuminate and clarify ethical problems related to these experiences. The results indicate that close relatives of patients with ALS need someone to talk to, as well as more information about the disease and its process. Furthermore, the study illustrates how ethical problems are related to choices and conflicts, and that a process including shared decision making is often an ideal when trying to find a solution to ethical problems.

scholarly journals Critical Review of Complementary and Alternative Medicine Use in Amyotrophic Lateral Sclerosis: Prevalence and Users’ Profile, Decision-Making, Information Seeking, and Disclosure in the Face of a Lack of Efficacy

2018 ◽  
Vol 18 (4) ◽  
pp. 225-232 ◽  
Author(s):  
Jon Adams ◽  
Michael Lee ◽  
Wenbo Peng
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
Alternative Medicine ◽  
Complementary And Alternative Medicine ◽  
Information Seeking ◽  
Disease Process ◽  
Cam Use ◽  
Als Patients ◽  
Lateral Sclerosis ◽  
Complementary And Alternative

Background: Despite a lack of evidence of clinical efficacy for complementary and alternative medicine (CAM) use in amyotrophic lateral sclerosis (ALS), these medicines remain popular around the world. Objective: To examine the prevalence and cost of CAM use in ALS and CAM users’ profile, decision-making, information seeking, and disclosure among ALS patients. Methods: A comprehensive literature search was conducted of MEDLINE, CINAHL/SCOPUS, and AMED databases from their inception to April 2018. This review followed PRISMA guidelines and employed a quality scoring system to assess the included papers. Results: Seven papers met the inclusion criteria and were thematically analysed. ALS patients utilized a range of CAM therapies and/or products, with acupuncture and vitamins being the most frequently reported. CAM modalities were often employed concurrently with conventional medications throughout the disease process. Although some ALS patients reported positive experience regarding CAM use, many were reluctant to disclose their CAM use to their clinicians. Research focusing on CAM use in ALS remains ad hoc and restricted to only a few countries. The rigour and quality of this research field to date has been varied, predominantly drawing upon regional/localized data and failing to report CAM users’ characteristics. Conclusion: A proportion of ALS patients report utilizing CAM concurrently with conventional treatments. Such use, set amidst a dearth of evidence for the efficacy of CAM in ALS, poses potential direct and indirect risks to patient care, and medical providers should be mindful of and enquire about CAM use when treating ALS patients.

scholarly journals The neural network basis of altered decision‐making in patients with amyotrophic lateral sclerosis

2020 ◽  
Vol 7 (11) ◽  
pp. 2115-2126
Author(s):  
Kazunori Imai ◽  
Michihito Masuda ◽  
Hirohisa Watanabe ◽  
Aya Ogura ◽  
Reiko Ohdake ◽  
...  
Keyword(s):  
Neural Network ◽  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
The Neural Network ◽  
Lateral Sclerosis

scholarly journals Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care

2013 ◽  
Vol 18 (5) ◽  
pp. 1769-1782 ◽  
Author(s):  
Anne Hogden ◽  
David Greenfield ◽  
Peter Nugus ◽  
Matthew C Kiernan
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
Multidisciplinary Care ◽  
Lateral Sclerosis

scholarly journals Patterns of Non-Invasive Ventilation in Amyotrophic Lateral Sclerosis

2018 ◽  
Vol 45 (4) ◽  
pp. 445-450
Author(s):  
Nevena Markovic ◽  
Marcus Povitz ◽  
Joanne Smith ◽  
David Leasa ◽  
Christen Shoesmith ◽  
...  
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
Invasive Ventilation ◽  
Non Invasive ◽  
Non Invasive Ventilation ◽  
End Of Life Decision ◽  
Life Decision ◽  
Lateral Sclerosis ◽  
Over Time

AbstractBackground: Non-invasive ventilation (NIV) improves quality of life and survival in patients with amyotrophic lateral sclerosis (ALS) and respiratory symptoms. Little is known about the patterns of NIV use over time and the impact of NIV on end-of-life decision-making in ALS. Objective: This study assessed the pattern of NIV use over the course of the disease and the timing of end-of-life discussions in people living with ALS. Method: A retrospective single-center cohort study was performed at London Health Sciences Centre. Daily NIV duration of use was evaluated at 3-month intervals. The timing of diagnosis, NIV initiation, discussions relating to do-not-attempt-resuscitation (DNAR) and death were examined. Results: In total, 48 patients were included in the analysis. Duration of NIV use increased over time, and tolerance to NIV was observed to be better than expected in patients with bulbar-onset ALS. There was a high degree of variability in the timing of end-of-life discussions in patients with ALS (356±451 days from diagnosis). In this cohort, there was a strong association between the timing of discussions regarding code status and establishment of a DNAR order (r2=0.93). Conclusion: This retrospective cohort study suggests that the use of NIV in ALS increases over time and that there remains a great deal of variability in the timing of end-of-life discussions in people living with ALS. Future prospective studies exploring the use NIV over the disease trajectory and how NIV affects end-of-life decision-making in people with ALS are needed.

scholarly journals The Association Between Maladaptive Metacognitive Beliefs and Emotional Distress in People Living With Amyotrophic Lateral Sclerosis

2021 ◽  
Vol 12 ◽  
Author(s):  
Rachel Dodd ◽  
Peter L. Fisher ◽  
Selina Makin ◽  
Perry Moore ◽  
Mary Gemma Cherry
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Emotional Distress ◽  
Physical Functioning ◽  
Demographic Factors ◽  
Repetitive Negative Thinking ◽  
Duration Of Symptoms ◽  
Negative Thinking ◽  
Metacognitive Beliefs ◽  
Lateral Sclerosis ◽  
Time Since Diagnosis

ObjectiveApproximately half of all people living with amyotrophic lateral sclerosis (ALS) experience persistent or recurrent emotional distress, yet little is known about the psychological processes that maintain emotional distress in this population. The self-regulatory executive functioning (S-REF) model specifies that maladaptive metacognitive beliefs and processes are central to the development and maintenance of emotional distress. This study explored whether maladaptive metacognitive beliefs are associated with emotional distress after controlling for demographic factors, time since diagnosis, and current level of physical functioning.DesignIn a cross-sectional design, 75 adults with a diagnosis of ALS completed self-report questionnaires. Participants had a mean age of 60.40 years, mean duration of symptoms 63.92 months, and male:female gender ratio of 14:11.Main Outcome MeasuresQuestionnaires assessed emotional distress (HADS, adapted for ALS), physical functioning (ALSFRS-R), repetitive negative thinking (RTQ-10), metacognitive beliefs (MCQ-30), and demographic factors.ResultsMaladaptive metacognitive beliefs explained additional variance in emotional distress after controlling for age, gender, time since diagnosis, physical functioning, and repetitive negative thinking. Repetitive negative thinking partially mediated the relationships between positive and negative metacognitive beliefs and emotional distress.ConclusionsThese data support the utility of the metacognitive model in understanding emotional distress in people with ALS. Examination of the temporal relationship between maladaptive metacognitive beliefs and emotional distress in people living with ALS may help to guide the development of therapeutic approaches.

Decision-making for tracheostomy in amyotrophic lateral sclerosis (ALS): a retrospective study

2017 ◽  
Vol 18 (7-8) ◽  
pp. 492-497 ◽  
Author(s):  
Piero Ceriana ◽  
Sara Surbone ◽  
Daniele Segagni ◽  
Annia Schreiber ◽  
Annalisa Carlucci
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
Retrospective Study ◽  
Lateral Sclerosis
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