ALS: The Breathless Fight for Death

5. April 2012
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The matter of terminating increasingly requested artificial respiration in patients with amyotrophic lateral sclerosis patients ought to follow the will of the patient. Yet there is a lack of guidelines for discontinuation of such therapy. A retrospective study is helping here.

Respiratory failure in amyotrophic lateral sclerosis (ALS) is the symptom that defines the terminal phase of the illness. Questions on the possible need of any artificial respiration to be done on patients need to be clarified with them and their families. Whether it be invasive or non-invasive ventilation using a mask, many patients at some time want an end to the artificial respiration and thus the termination of life-prolonging measures. In the first week of March, one more patient at Berlin’s Charité reached this point.


For many of those involved, this is a touchy subject. Is this a matter of a legitimate request being made, of a legal grey area? Whatever the case, at least 40 percent of doctors trained in oncology and palliative care believe that elective termination of assisted ventilation is active euthanasia, writes Professor Thomas Meyer from the Berlin Charité clinic for ALS in the journal Neurology. In a judgment of the German Federal Supreme Court (Bundesgerichtshof) from 08.05.1991, it states: “Even with a hopeless prognosis, euthanasia may not be done through deliberate killing, but only in accordance with the stated or presumed intention of the parties via the non-initiation or discontinuation of life-prolonging measures”. If the will of the patient is disregarded and he or she is artificially respired against his or her own wishes, this becomes a case of personal injury. The law allows a natural death, but it is unclear how that occurs.

To die naturally: but how?

Since there are no official recommendations or guidelines in existence. To just stop artificial respiration – that doesn’t really work of course. Palliative drug therapy is used to control symptoms. In a retrospective study, Thomas Meyer and colleagues offer a robust description of their approach to elective termination of respiration for nine patients of age 33-73 with ALS who had been mechanically or artificially ventilated. This included common treatment principles. In the systematic clinical evaluation of the data, premedication, initiation of deep sedation, interruption of ventilation and the subsequent death phase were all elements which were incorporated.

The researchers distinguish between two methods of medical treatment with different objectives. These are dependent on the presence or absence of spontaneous breathing:

Intensified symptom control (IS) of anxiety, agitation and dyspnea is achievable using benzodiazepines, morphine sulphate as well as by supplying oxygen. The primary objective is not the resultant reduction of consciousness. This treatment was preferred for patients with mask ventilation and some degree of spontaneous breathing and led via the retention of CO2 to narcosis, which allows the removal of the respirator mask. 



Deep sedation (TS), also done with benzodiazepines and morphine sulphate, targets the deep loss of consciousness and is preferred for patients with no or minimal residual spontaneous breathing, since the separation from the ventilator results in rapid dyspnea and hypoxia. A primary induction of anesthesia with a bolus of morphine sulphate and subsequent continuous administration via a syringe pump prevents against the presence of any consciousness in instances where this has been evaluated as not tolerable or worth preserving.

Type of treatment influences the course of mortality

IS and TS influence the temporal progression of the final phase. With IS, this can be a rather extended period; here it amounted to a period from 22 to 28 hours. The average dose rate of morphine sulphate was 10 mg/h, the total dose being 185-380 mg. Patients under TS died after an average of 31 minutes. The bolus and high dose rates resulted in a mean total dose of morphine sulphate of 120 mg. Complications or serious adverse events did not occur. Posthypoxic myoclonus and automatisms are possible, and occurred in two patients.



The idea of provision and the occurrence of death was consented to by all family and friends involved, even though there was no data collected here. In the future, controlled studies involving multiple centres would be required so as to pursue many pressing issues, according to the authors. Only in this way can evidence-based guidelines for palliative care then be developed. And they are increasingly needed more urgently. Since the publication of the study, at the Berlin Charité 20 patients have been treated according to this concept, says Meyer.

Artificial respiration – not necessarily right up to the end

The fact that many patients choose not to have artificial respiration usually resides in the fear of loss of control and autonomy. Many patients however can improve their quality of life through artificial respiration, which is something one study from the German Medical Journal Ärzteblatt is able to prove. With information available on the possibility of termination of respiratory therapy, the proportion of artificially-respirated patients increases, so that elective termination of treatment gains ever greater importance.

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1 comment:

Dr. Luiz Antonio de Arruda Botelho
Dr. Luiz Antonio de Arruda Botelho

I think that it is very important to prepare the patients to the death. For example talking about several religious concepts, including the possibility to have “life after death” which has been also published by medical doctors who have investigated the reports of patients who have survived after a havind had a clinical death diagnosis.
If patients improve their knowledge about death, maybe more of them will ask to stop artifical ventilation sooner, with less suffering and expenses…

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