Amyotrophic lateral sclerosis and assisted ventilation: How patients decide

Lemoignan, Josée; Ells, Carolyn

doi:10.1017/s1478951510000027

Cited by 70 publications

(128 citation statements)

References 11 publications

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“…Few qualitative studies have examined decision-making in ALS [29][30][31]. Research has elicited possible influences (including input from family and friends; religious and moral convictions and life sustenance [29]) and has identified themes such as the meaning of the intervention, the importance of context and values, the effect of fear, the need for information, and adaptation to or acceptance of the intervention [30].…”

Section: Introductionmentioning

confidence: 99%

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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word count: 174 words 2 ABSTRACTThe objective was to identify factors associated with decisions made by patients with Amyotrophic Lateral Sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study.Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-depth interview, with or without their informal caregiver present.Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: i) patientcentric factors (including perceptions of control, acceptance and need, and aspects of fear); ii) external factors (including roles played by healthcare professionals, family, and information provision); and iii) the concept of time (including living in the moment and the notion of 'right thing, right time'). Many aspects of these factors were interrelated. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than 'algorithm-based') approaches to facilitating decision-making by people with ALS who require palliative interventions.3

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Section: Introductionmentioning

confidence: 99%

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

et al. 2015

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“…This DSEI does not J Neurol say how to support relatives but aims to draw attention to the fact that relatives in many situations may need support. Examples of these situations, ranging from psychological problems and emotional support to questions regarding self-determination of the patient and surrogate decision making, can be found in the underlying literature [12][13][14]. While in many cases, there was a consensus in the literature about how to deal with specific ethical issues; for some DSEIs, we found inconsistent recommendations or references to controversies.…”

Section: Discussionmentioning

confidence: 90%

“…One of the text sources for this DSEI is the following: 'There was agreement that timing and how information was delivered affected decisions made. However, there was no consensus regarding the best time and method to provide information' [12]. Some text passages allowed further differentiation of DSEIs into more subcategories, but for didactic and readability purposes we have not further divided DSEIs in this paper.…”

Section: Resultsmentioning

confidence: 99%

“…For example, the major category 'decision-making process' with its sub-category 'adequate timing, amount and delivery of information' contains the DSEI 'be aware of the influence of timing and extent of patient information on the patient's decisions'. While Baumrucker et al [15] argue for early and complete education of patients to maximise patient autonomy in the decision-making process, Lemoignan and Ellis [12] point out that the timing and manner of information delivery have an influence on decisions made by patients, without making recommendations about how to deal with that ethical issue. We aimed to indicate such controversies by our DSEI without showing a preference for any of the possible solutions presented in the literature.…”

Section: Discussionmentioning

confidence: 99%

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The full spectrum of ethical issues in the care of patients with ALS: a systematic qualitative review

et al. 2015

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Dealing systematically with ethical issues in amyotrophic lateral sclerosis (ALS) care requires an unbiased awareness of all the relevant ethical issues. The aim of the study was to determine systematically and transparently the full spectrum of ethical issues in ALS care. We conducted a systematic review in Medline and Google Books (restricted to English and German literature published between 1993 and 2014). We applied qualitative text analysis and normative analysis to categorise the spectrum of ethical issues in ALS care. The literature review retrieved 56 references that together mentioned a spectrum of 103 ethical issues in ALS care. The spectrum was structured into six major categories that consist of first and second-order categories of ethical issues. The systematically derived spectrum of ethical issues in ALS care presented in this paper raises awareness and understanding of the complexity of ethical issues in ALS care. It also offers a basis for the systematic development of informational and training materials for health professionals, patients and their relatives, and society as a whole. Finally, it supports a rational and fair selection of all those ethical issues that should be addressed in health policies, position papers and clinical practice guidelines. Further research is needed to identify ways to systematically select the most relevant ethical issues not only in the clinical environment, but also for the development of clinical practice guidelines.

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“…The pathophysiology of respiratory failure in neuromuscular diseases, such as ALS, is complex and may involve several inter-related factors or not. Changes in ventilation control, appearance of fatigue signals and respiratory muscular weakness, changes in mechanical properties of the respiratory system, changes in gas exchange, especially at night and upper respiratory tract dysfunction are some of the impairments found (Lemoignan and Ells, 2010).…”

Section: Discussionmentioning

confidence: 99%

Clinical and Functional Profile of Amyotrophic Lateral Sclerosis Patients: A One Year Follow Up

Orsini¹,

Freitas²,

Nascimento³

et al. 2011

American Journal of Neuroscience

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Problem statement: Amyotrophic Lateral Sclerosis (ALS) is a progressive and degenerative disease that affects the anterior horn motor neurons of the spinal cord and pyramidal tracts. In Brazil, there are few epidemiological data on this disease. Recently, some important findings have been reported, allowing a better understanding on the underlying processes of neuronal death, as well as the characteristics of this population. To discuss the clinical and functional profile of a convenience sample of patients with ALS in Rio de Janeiro and Neurology Department-Federal Fluminense University to compare the data with studies of other regions and countries. Approach: We used the Severity and Functional Ability Scale (SFAS) as a clinical and functional indicator for ALS. The modified El Escorial criteria were used to establish the diagnosis. The participants underwent five quarterly assessments during the study period. The research took place at two University Hospitals (Hospital Universitario Antonio Pedro-Universidade Federal Fluminense and Instituto de Neurologia Deolindo Couto-Universidade Federal do Rio de Janeiro) from March 2007 to December 2009. Results: Of the 98 recruited subjects, only 24 have completed all phases of the study. The average age was 52.7±4.1 years. The time between the onset of first symptoms and seeking care services was 11.6±12.:4 months. The time between the first symptoms and the diagnosis was 20.5±8.4 months. Muscle weakness was identified as the initial symptom in most cases. Patients had impaired muscle strength, speech, swallowing, respiratory function and severity stages of SFAS. The disease had different forms of initial presentation (impaired speech, limbs strength, respiratory function or swallowing), time to progression and clinical characteristics in our population. Conclusion: The knowledge on the individual clinical evolution in ALS is of paramount importance for the healthcare team to provide a correct treatment during the decline of Am. J. Neuroscience 2 (1): [28][29][30][31][32][33][34] 2011 29 the disease and formulate theoretical and conceptual issues, aiming at solving problems in clinical practice.

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Amyotrophic lateral sclerosis and assisted ventilation: How patients decide

Cited by 70 publications

References 11 publications

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

The full spectrum of ethical issues in the care of patients with ALS: a systematic qualitative review

Clinical and Functional Profile of Amyotrophic Lateral Sclerosis Patients: A One Year Follow Up

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