Decision making of using invasive mechanical ventilation in patients with amyotrophic lateral sclerosis in Sapporo

Objectives. The possibility of prolonging and augmenting the quality of life of respiratory patients in end-stage disease and in particular neuromuscular disease patients depends on an increased level of care. Amyotrophic lateral sclerosis (ALS) is a neurological disease characterized by a fast progressive impairment of respiratory function which leads to mechanical ventilation and high burden of care. A specifically designed questionnaire was administered to caregivers to analyze the level of care provided to these patients in our districts. Patients and methods. The study population consisted of 70 patients (44 males and 26 females). Of the 70 patients, 46 were being treated with non-invasive ventilation and 24 with invasive mechanical ventilation. The questionnaire was divided in two parts: questions 1 to 13 investigated life conditions and 14 to 22 the quality of care provided. Results. The patients studied present a heavy burden of care and this is in relation to the quantity of respiratory aids prescribed. The symptom which created statistically significant problems for care was breathlessness, as is often reported in the literature. The presence of homecare tended to create conditions of greater serenity for the caregivers. Conclusions. This study shows that the burden of care in end-stage ALS patients is very onerous, and it can help to point out problems not sufficiently contemplated in healthcare planning.

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Radiotherapy treatment of the salivary glands, sialorrhea, and non-invasive mechanical ventilation in amyotrophic lateral sclerosis: what are we doing?

Journal of Neurology ◽

10.1007/s00415-015-8003-1 ◽

2016 ◽

Vol 263 (3) ◽

pp. 583-584

Author(s):

Giancarlo Garuti ◽

Jessica Mandrioli ◽

Antonio M. Esquinas

Keyword(s):

Mechanical Ventilation ◽

Amyotrophic Lateral Sclerosis ◽

Salivary Glands ◽

Invasive Mechanical Ventilation ◽

Non Invasive ◽

Radiotherapy Treatment ◽

Lateral Sclerosis

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Decision-making in the respiratory care of amyotrophic lateral sclerosis: should home mechanical ventilation be used?

Palliative Medicine ◽

10.1177/0269216393007004s09 ◽

1993 ◽

Vol 7 (4_suppl) ◽

pp. 49-64 ◽

Cited By ~ 15

Author(s):

Edward Anthony Oppenheimer

Keyword(s):

Decision Making ◽

Mechanical Ventilation ◽

Amyotrophic Lateral Sclerosis ◽

Respiratory Function ◽

Ventilatory Support ◽

Respiratory Care ◽

Home Mechanical Ventilation ◽

Lateral Sclerosis ◽

At Home

As respiratory function starts to deteriorate in those with amyotrophic lateral sclerosis, one of the principal questions that has to be answered is whether it is appropriate to provide ventilatory support. Although expensive, it is perfectly feasible to provide this at home, and this article examines many of the issues surrounding home mechanical ventilation.

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Ethical issues in invasive mechanical ventilation for amyotrophic lateral sclerosis

Nursing Ethics ◽

10.1177/0969733009350945 ◽

2010 ◽

Vol 17 (1) ◽

pp. 51-63 ◽

Cited By ~ 11

Author(s):

Yuko Hirano ◽

Yoshihiko Yamazaki

Keyword(s):

Decision Making ◽

Amyotrophic Lateral Sclerosis ◽

Ethical Issues ◽

Invasive Mechanical Ventilation ◽

Patient Decision Making ◽

Nursing Advocacy ◽

Patient Decision ◽

Decision Making Factors ◽

Herth Hope Index ◽

Lateral Sclerosis

Currently in Japan, discontinuing an invasive mechanical ventilator (IMV) is illegal; therefore IMV-related decision making is a crucial issue. This study examined IMV decision-making factors and psychological conflict in 50 patients with amyotrophic lateral sclerosis. The Herth Hope Index was used for the assessment of pre- and post-IMV conflict. Interviews identified some decision-making factors: patient’s decision, patient’s and family’s mutual decision, family’s decision, and emergency-induced without patient’s or family’s consent. Participants who experienced no IMV-related regret received sufficient prior IMV education from physicians and nurses, and time for reflection and family consultation. Their hope was similar to their pre-onset levels. Patients who received no prior IMV education accepted treatment as a natural progression. Their hope levels were lower than pre-onset. Those who received only a brief prior IMV explanation rejected the ventilator, experiencing regret if they were given an emergency IMV. Their hope levels were among the lowest. However, some of these patients managed to overcome their regret through being helped by nurses. Sufficient physician explanation and nursing advocacy for autonomous patient decision making are critical for improving hope in this patient group.

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