Ethical considerations and palliative care in patients with amyotrophic lateral sclerosis: A review

Danel-Brunaud, Véronique; Touzet, Licia; Chevalier, Luc; Moreau, Caroline; Devos, David; Vandoolaeghe, Sylvie; Defebvre, Luc

doi:10.1016/j.neurol.2017.03.032

Cited by 30 publications

(27 citation statements)

References 42 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…16 There is consensus that advance care planning discussions should occur, but there is little evidence to support the timing of such discussions. [8][9][10] Within our cohort, there was a strong association between the timing of first documented discussion regarding code status and establishment of a DNAR order. It is difficult to understand whether this relationship exists because the physician was good at gauging patient's readiness to address the topic or that patients are prepared to talk about endof-life decisions from even earlier in the course of the disease.…”

Section: Discussionmentioning

confidence: 69%

“…6,7 Advance care planning and end-of-life decision-making are important elements in the management of ALS. [8][9][10] Understanding how NIV use changes throughout the disease trajectory will help guide patients and families in decisions regarding end of life, as well as the timing of end-of-life discussions. It will also assist physicians with optimizing timing for broaching these discussions.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Patterns of Non-Invasive Ventilation in Amyotrophic Lateral Sclerosis

Markovic

Povitz

Smith

et al. 2018

Can. J. Neurol. Sci.

View full text Add to dashboard Cite

show abstract

Section: Discussionmentioning

confidence: 69%

Section: Introductionmentioning

confidence: 99%

Patterns of Non-Invasive Ventilation in Amyotrophic Lateral Sclerosis

Markovic

Povitz

Smith

et al. 2018

Can. J. Neurol. Sci.

View full text Add to dashboard Cite

show abstract

“…It was argued before that this approach will also disburden caregivers from vital decisions for their loved ones in the fear of making them against their actual will. Parallel to ensuring the patient's autonomy, the highly burdened caregivers need to be involved in medical decision making ( 6 , 15 ) and to receive specialized practical and psychological support ( 72 , 73 ).…”

Section: Impact Of Patient Autonomy In Palliative Carementioning

confidence: 99%

“…Potentially life-sustaining measures such as percutaneous endoscopic gastrostomy (PEG), non-invasive ventilation (NIV) and tracheostomy with invasive ventilation (TIV) can also improve QoL by controlling feeding problems or dyspnea. However, their initiation needs careful discussion, individualized decisions and patients' explicit and fully informed consent ( 6 – 9 ).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis

Linse

Aust

Joos³

et al. 2018

Front. Neurol.

View full text Add to dashboard Cite

Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease, leading to progressive paralysis, dysarthria, dysphagia, and respiratory disabilities. Therapy is mostly focused on palliative interventions. During the course of the disease, verbal as well as nonverbal communicative abilities become more and more impaired. In this light, communication has been argued to be “the essence of human life” and crucial for patients' quality of life. High-tech augmentative and alternative communication (HT-AAC) technologies such as eyetracking based computer devices and brain-computer-interfaces provide the possibility to maintain caregiver-independent communication and environmental control even in the advanced disease state of ALS. Thus, they enable patients to preserve social participation and to independently communicate end-of-life-decisions. In accordance with these functions of HT-AAC, their use is reported to strengthen self-determination, increase patients' quality of life and reduce caregiver burden. Therefore, HT-AAC should be considered as standard of (palliative) care for people with ALS. On the other hand, the supply with individually tailored HT-AAC technologies is limited by external and patient-inherent variables. This review aims to provide an overview of the possibilities and limitations of HT-AAC technologies and discuss their role in the palliative care for patients with ALS.

show abstract

The experiences of patients with amyotrophic lateral sclerosis of their decision‐making processes to invasive home mechanical ventilation—A qualitative study

et al. 2023

View full text Add to dashboard Cite

Amyotrophic lateral sclerosis (ALS) is a disease being rapidly progressive affecting patients' whole-body function and has an impact on them psychologically. Therefore, patients at an early disease stage have to be well informed about their future treatment opportunities: home mechanical ventilation (HMV) which is either non-invasive or invasive or palliative care. It is important that they are able to make an informed decision before it becomes too late and they end up with invasive home mechanical ventilation (IHMV) without wanting it. Therefore, it is important to uncover aspects that may ease the patients' decision-making process.

show abstract

Ethical considerations and palliative care in patients with amyotrophic lateral sclerosis: A review

Cited by 30 publications

References 42 publications

Patterns of Non-Invasive Ventilation in Amyotrophic Lateral Sclerosis

Patterns of Non-Invasive Ventilation in Amyotrophic Lateral Sclerosis

Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis

The experiences of patients with amyotrophic lateral sclerosis of their decision‐making processes to invasive home mechanical ventilation—A qualitative study

Contact Info

Product

Resources

About