Editorial
ALS: Control ventilation, manage respiratory secretions and, when required, oversee the process of dying
ELA: controlar a ventilação, manobrar as secreções respiratórias e, quando necessário, supervisionar o processo da morte
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While there is no cure for ALS, treatment is available and, as recently said to us a board member of a Spanish ALS patient association, “our doctor is the pulmonologist”. This is true, but only to an extent. The contribution of a neurologist and other professionals is essential for the management of some of the problems which damage quality of life of patients and their relatives.<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a> Moreover, respiratory care teams are committed to move treatment away from the environment of palliative care, for those patients who desire this, and move it towards what A. Oppenheimer called “high technology and compassionate care.” Yet, we must also prevent dyspnoea and any other kind of suffering for those patients who refuse life-sustaining treatment.</p><p id="par0010" class="elsevierStylePara elsevierViewall">The old statistics on the survival of ALS patients are no longer valid because their lives can now be prolonged – without damaging quality of life and even improving it – thanks to the respiratory muscle aids now in use: aids for the maintenance of adequate alveolar ventilation and the appropriate management of pulmonary secretions. Non-invasive procedures have demonstrated their ability to have a positive effect on the prognosis of these patients and they constitute extremely valuable tools until the impairment of the bulbar-innervated muscles becomes so severe that they become ineffective.<a class="elsevierStyleCrossRefs" href="#bib0010"><span class="elsevierStyleSup">2,3</span></a> Thus, the muscles which cause non-invasive ventilation techniques to fail are not the thoracic muscles (as inexperienced doctors might suspect) but those which are bulbar-innervated. Patients can be kept alive by means of non-invasive techniques without the patient being required to make any effort to breathe or cough,<a class="elsevierStyleCrossRefs" href="#bib0010"><span class="elsevierStyleSup">2–4</span></a> even during episodes of pneumonia<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a> – bulbar impairment permitting.</p><p id="par0015" class="elsevierStylePara elsevierViewall">To achieve this, comprehensive knowledge of the available tools and their use is necessary: the right ventilators, masks of various types, procedures for cough capacity assessment and coughing aids where necessary, having in mind that, as Dr Escarrabill wrote,<a class="elsevierStyleCrossRef" href="#bib0030"><span class="elsevierStyleSup">6</span></a> “the therapy “package” must also include the organisation of care”. A good doctor must not introduce devices too early into the home of a patient nor delay this unnecessarily; patients must be carefully studied in order to ensure that they receive the most effective and efficient treatment. And let us not forget that very few patients refuse non-invasive procedures, whereas the percentage of patients who refuse invasive treatment is relatively high.<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a> Therefore, when we accept the responsibility to take on the care of a patient, it also becomes our responsibility to be masters of the techniques which can provide support to the respiratory muscles. When speaking of such expertise, it is important to remember that what is of real value in a unit for ALS patients is not the fact that the patient may be visited by a range of specialists in the course of one day. Of course, such co-ordination is of interest, but it becomes of little value if the shift schedule is such that these patients are at times left in the care of doctors with little or no expertise in non-invasive ventilation or who are unaware of how to undertake patient-centred, informed decision-making. Can anyone imagine a lung transplant patient being treated in an emergency by a doctor with no relevant experience?</p><p id="par0020" class="elsevierStylePara elsevierViewall">When non-invasive procedures fail, there are two alternatives, which the patients and their family members must have been able to consider previously in good time, having received full information on them: tracheotomy ventilation and comprehensive palliative care.<a class="elsevierStyleCrossRefs" href="#bib0005"><span class="elsevierStyleSup">1,4,7</span></a> Units specialising in the care of ALS patients must be able to provide them with both of these options at excellent standards of quality. Doctors should not begin treatment involving mechanical ventilation if they cannot then end such treatment in the proper manner, if this is the patient's wish.<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a> We must minimise the suffering of patients and relatives.</p><p id="par0025" class="elsevierStylePara elsevierViewall">This edition of the Rev Port Pneumol makes a significant contribution to knowledge regarding the treatment of respiratory problems suffered by ALS patients thanks to the work of a group of experts from across Europe.<a class="elsevierStyleCrossRefs" href="#bib0030"><span class="elsevierStyleSup">6,9,10</span></a> However, we must also pay tribute to the work of someone who for many of us has been the real pioneer. He was the one who enabled us to change our procedures and multiply our therapeutic effectiveness while minimising treatment side-effects. We have come a long way on our own now, but we must ensure that those new to the field understand that it was JR Bach who showed us the way.</p><p id="par0030" class="elsevierStylePara elsevierViewall">In order to improve treatment, in the early 2000s we would often stress the importance for the presence of units specialising in the respiratory care of ALS patients.<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">11</span></a> Unfortunately, until very recently, the lack of dedicated resources for such patients was still a common complaint, as their rights to be treated fairly were clearly not being respected.<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a> However, things are changing. The profile of ALS patients is rising in both medical and social contexts and pulmonologists are showing particular interest in acquiring the right knowledge and skills to be able to provide them with high-quality care. This journal is an example of this change.</p></span>" "pdfFichero" => "main.pdf" "tienePdf" => true "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0005" "bibliografiaReferencia" => array:11 [ 0 => array:3 [ "identificador" => "bib0005" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "EFNS guidelines on the clinical management of amyotophic lateral sclerosis (MALS)- Revised report of an EFNS task force" "autores" => array:1 [ 0 => array:2 [ "etal" => true "autores" => array:6 [ 0 => "P.M. Andersen" 1 => "S. Abrahams" 2 => "G.D. Borasio" 3 => "M. de Carvalho" 4 => "A. Chio" 5 => "P. 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| Year/Month | Html | Total | |
|---|---|---|---|
| 2024 November | 15 | 11 | 26 |
| 2024 October | 43 | 45 | 88 |
| 2024 September | 61 | 29 | 90 |
| 2024 August | 70 | 41 | 111 |
| 2024 July | 59 | 27 | 86 |
| 2024 June | 51 | 34 | 85 |
| 2024 May | 42 | 34 | 76 |
| 2024 April | 58 | 32 | 90 |
| 2024 March | 48 | 23 | 71 |
| 2024 February | 26 | 22 | 48 |
| 2024 January | 31 | 22 | 53 |
| 2023 December | 25 | 32 | 57 |
| 2023 November | 23 | 29 | 52 |
| 2023 October | 22 | 29 | 51 |
| 2023 September | 25 | 38 | 63 |
| 2023 August | 32 | 20 | 52 |
| 2023 July | 22 | 27 | 49 |
| 2023 June | 20 | 14 | 34 |
| 2023 May | 31 | 30 | 61 |
| 2023 April | 26 | 22 | 48 |
| 2023 March | 46 | 17 | 63 |
| 2023 February | 35 | 22 | 57 |
| 2023 January | 28 | 21 | 49 |
| 2022 December | 30 | 16 | 46 |
| 2022 November | 50 | 32 | 82 |
| 2022 October | 38 | 30 | 68 |
| 2022 September | 22 | 26 | 48 |
| 2022 August | 32 | 49 | 81 |
| 2022 July | 31 | 46 | 77 |
| 2022 June | 25 | 35 | 60 |
| 2022 May | 33 | 39 | 72 |
| 2022 April | 32 | 33 | 65 |
| 2022 March | 31 | 48 | 79 |
| 2022 February | 28 | 30 | 58 |
| 2022 January | 27 | 30 | 57 |
| 2021 December | 24 | 38 | 62 |
| 2021 November | 32 | 35 | 67 |
| 2021 October | 30 | 38 | 68 |
| 2021 September | 25 | 34 | 59 |
| 2021 August | 30 | 20 | 50 |
| 2021 July | 25 | 23 | 48 |
| 2021 June | 23 | 26 | 49 |
| 2021 May | 34 | 28 | 62 |
| 2021 April | 77 | 79 | 156 |
| 2021 March | 60 | 19 | 79 |
| 2021 February | 69 | 14 | 83 |
| 2021 January | 38 | 16 | 54 |
| 2020 December | 39 | 9 | 48 |
| 2020 November | 29 | 20 | 49 |
| 2020 October | 27 | 13 | 40 |
| 2020 September | 49 | 19 | 68 |
| 2020 August | 45 | 25 | 70 |
| 2020 July | 71 | 18 | 89 |
| 2020 June | 59 | 18 | 77 |
| 2020 May | 83 | 16 | 99 |
| 2020 April | 65 | 10 | 75 |
| 2020 March | 55 | 16 | 71 |
| 2020 February | 42 | 19 | 61 |
| 2020 January | 66 | 20 | 86 |
| 2019 December | 51 | 19 | 70 |
| 2019 November | 58 | 14 | 72 |
| 2019 October | 62 | 11 | 73 |
| 2019 September | 58 | 15 | 73 |
| 2019 August | 132 | 10 | 142 |
| 2019 July | 125 | 19 | 144 |
| 2019 June | 113 | 14 | 127 |
| 2019 May | 153 | 25 | 178 |
| 2019 April | 154 | 20 | 174 |
| 2019 March | 274 | 26 | 300 |
| 2019 February | 280 | 17 | 297 |
| 2019 January | 244 | 29 | 273 |
| 2018 December | 175 | 8 | 183 |
| 2018 November | 60 | 2 | 62 |
| 2018 October | 69 | 8 | 77 |
| 2018 September | 28 | 7 | 35 |
| 2018 August | 48 | 23 | 71 |
| 2018 July | 47 | 19 | 66 |
| 2018 June | 63 | 14 | 77 |
| 2018 May | 72 | 20 | 92 |
| 2018 April | 80 | 18 | 98 |
| 2018 March | 82 | 11 | 93 |
| 2018 February | 40 | 12 | 52 |
| 2018 January | 60 | 19 | 79 |
| 2017 December | 40 | 18 | 58 |
| 2017 November | 27 | 17 | 44 |
| 2017 October | 23 | 13 | 36 |
| 2017 September | 20 | 20 | 40 |
| 2017 August | 29 | 27 | 56 |
| 2017 July | 16 | 16 | 32 |
| 2017 June | 26 | 20 | 46 |
| 2017 May | 31 | 12 | 43 |
| 2017 April | 14 | 2 | 16 |
| 2017 March | 19 | 33 | 52 |
| 2017 February | 10 | 2 | 12 |
| 2017 January | 16 | 6 | 22 |
| 2016 December | 11 | 11 | 22 |
| 2016 November | 5 | 4 | 9 |
| 2016 October | 10 | 8 | 18 |
| 2016 September | 3 | 4 | 7 |
| 2016 August | 7 | 6 | 13 |
| 2016 July | 4 | 8 | 12 |
| 2016 June | 0 | 7 | 7 |
| 2016 May | 7 | 8 | 15 |
| 2016 April | 20 | 3 | 23 |
| 2016 March | 45 | 23 | 68 |
| 2016 February | 50 | 20 | 70 |
| 2016 January | 34 | 18 | 52 |
| 2015 December | 50 | 23 | 73 |
| 2015 November | 39 | 21 | 60 |
| 2015 October | 26 | 22 | 48 |
| 2015 September | 36 | 16 | 52 |
| 2015 August | 36 | 17 | 53 |
| 2015 July | 19 | 5 | 24 |
| 2015 June | 15 | 7 | 22 |
| 2015 May | 29 | 7 | 36 |
| 2015 April | 31 | 16 | 47 |
| 2015 March | 34 | 17 | 51 |
| 2015 February | 38 | 10 | 48 |
| 2015 January | 38 | 14 | 52 |
| 2014 December | 50 | 20 | 70 |
| 2014 November | 32 | 17 | 49 |
| 2014 October | 47 | 22 | 69 |
| 2014 September | 36 | 18 | 54 |
| 2014 August | 78 | 44 | 122 |
| 2014 July | 103 | 60 | 163 |
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