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Communications to the Editor |

Home Mechanical Ventilation in Amyotrophic Lateral Sclerosis Patients Is Not Always a Problem FREE TO VIEW

Emilio Servera, MD, FCCP; Elia Gómez-Merino, MD; Diego Pérez, MD; Julio Marín, MD, FCCP
Author and Funding Information

Hospital Clinico Universitario Universidad de Valencia Valencia, Spain;Correspondence to: Emilio Servera, Avda. Blasco Ibañez, 84. 46021, Valencia, Spain; e-mail: Emilio.Servera @uv.es



Chest. 2000;117(3):924. doi:10.1378/chest.117.3.924
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Published online

To the Editor:

In an editorial in the New England Journal of Medicine concerning assisted suicide and alternatives for patients with amyotrophic lateral sclerosis (ALS),1 L.P. Rowland reported that “the progressive paralysis leads to increasing loss of function, culminating in complete dependence on the help of others for all activities of daily living and, if life is sustained by assisted ventilation, loss of the ability to communicate or swallow.” This sentence is misleading because it implies that the loss of ability to communicate or swallow is caused by the assisted ventilation rather than by the progressive paralysis that occurs as survival is prolonged.

In ALS, speech and swallowing difficulties are directly related to the disease itself. A large number of ALS patients experience swallowing problems and have severe difficulties talking even before ventilatory support is required. Tracheostomy ventilation can exacerbate these difficulties in some patients (but not all, because insuflation leaks with a deflated cuff, allowing speech). In our experience, noninvasive ventilation (NIV) can facilitate speech and swallowing. It also relieves hypoventilation symptoms and can result in weight gain.

Unfortunately, Rowland does not discuss NIV benefits and fails to discuss noninvasive ventilatory options other than remarking that“ positive pressure nasal ventilation is an alternative to tracheostomy for some patients.”1Does he mean tracheostomy is needed only for secretion management and protection against aspiration, or as an alternative to NIV even for patients who require 24-h ventilatory support? In fact, some patients whose time away from ventilation is negligible prefer NIV support to tracheostomy ventilation for comfort, appearance, facilitation of speech, and swallowing. NIV support includes not only nasal ventilation but mouthpiece ventilation, pneumobelt, and other noninvasive muscle aids, and this may significantly prolong life without resorting to tracheostomy.2Of course, when NIV fails, physicians need to offer the best choices in conventional ventilation procedures to patients.3

Unfortunately, most physicians and most patients are misinformed about noninvasive (and invasive) methods of prolonging and optimizing the quality of their lives.4Moreover, this misinformation can strongly influence the decisions concerning maintenance of life. Life in ALS patients is very hard, but fortunately, “there is life after ventilation.”5 It is important to bear this in mind when reading Rowland’s editorial.

References

Rowland, LP (1998) Assisted suicide and alternatives in amyotrophic lateral sclerosis.N Engl J Med339,987-988. [PubMed] [CrossRef]
 
Bach, JR Amyotrophic lateral sclerosis: predictors for prolongation of life by noninvasive respiratory aids.Arch Phys Med Rehab1995;76,828-831
 
Make, BJ, Hill, NS, Goldberg, AI, et al Mechanical ventilation beyond the intensive care unit: report of a consensus conference of the American College of Chest Physicians.Chest1998;113(suppl),289S-344S
 
Polkey, M, Lyall, R, Davidson, A, et al Ethical and clinical issues in the use of home noninvasive mechanical ventilation for the palliation of breathlessness in motor neurone disease.Thorax1999;54,367-371. [PubMed]
 
Scharf, T Yes, there is life after ventilation [editorial]. Chest. 1993;;103 ,.:1319. [PubMed]
 

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References

Rowland, LP (1998) Assisted suicide and alternatives in amyotrophic lateral sclerosis.N Engl J Med339,987-988. [PubMed] [CrossRef]
 
Bach, JR Amyotrophic lateral sclerosis: predictors for prolongation of life by noninvasive respiratory aids.Arch Phys Med Rehab1995;76,828-831
 
Make, BJ, Hill, NS, Goldberg, AI, et al Mechanical ventilation beyond the intensive care unit: report of a consensus conference of the American College of Chest Physicians.Chest1998;113(suppl),289S-344S
 
Polkey, M, Lyall, R, Davidson, A, et al Ethical and clinical issues in the use of home noninvasive mechanical ventilation for the palliation of breathlessness in motor neurone disease.Thorax1999;54,367-371. [PubMed]
 
Scharf, T Yes, there is life after ventilation [editorial]. Chest. 1993;;103 ,.:1319. [PubMed]
 
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