Current management of ALS

Bradley, Walter G.; Anderson, Fred; Bromberg, Mark B.; Gutmann, Laurie; Harati, Yadollah; Ross, Mark A.; Miller, Robert G.

doi:10.1212/wnl.57.3.500

Cited by 122 publications

(58 citation statements)

References 13 publications

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“…Although the percentage of ALS patients that actually die following acute respiratory distress is small (0-3%), a large percentage of ALS patients are afraid of suffocation [3,6,9]. A retrospective study carried out in ALS caregivers, however, reported that 52% of ALS patients had moderate to severe choking episodes during the last month of their life [8].…”

Section: Discussionmentioning

confidence: 99%

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients

et al. 2010

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In The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%). We wanted to gain insight into the reasons for ALS patients requesting EAS and compare these with the reasons of cancer and heart failure patients. Knowing disease-specific reasons for requesting EAS may improve palliative care in these vulnerable patients. The data used in the present study were derived from the Support and Consultation in Euthanasia in The Netherlands (SCEN) evaluation study. This study provided consultation reports and questionnaires filled out by the attending physicians from 3,337 consultations conducted by SCEN physicians in situations where a patient requested EAS. For this study we selected data on all ALS patients (n = 51), all heart failure patients (n = 61), and a random sample of 73 cancer patients. The most frequently reported reasons for unbearable suffering were: fear of suffocation (45%) and dependency (29%) in ALS patients, pain (46%) and fatigue (28%) in cancer patients, and dyspnea (52%) and dependency (37%) in heart failure patients. Somatic complaints were reported more frequently as a reason for EAS by cancer patients [odds ratio (OR) 0.20, 95% confidence interval (CI) 0.09-0.46] and heart failure patients [OR 0.16, 95% CI 0.05-0.46] than by ALS patients. ALS patients should be helped in a timely fashion to cope with psychosocial symptoms, e.g., by informing them about the low risk of suffocation in the terminal phase and the possible means of preventing this.

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Section: Discussionmentioning

confidence: 99%

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients

et al. 2010

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“…In the United States, fewer than 5% of patients opt for tracheostomy and mechanical ventilation. 24,25 Factors that contribute to this opting out include the financial burden associated with daily maintenance, quality of life concerns for patient and caregiver, and uncertainty about when to remove a patient from the ventilator. 7,20 If a patient elects to undergo tracheostomy and mechanical ventilation, it is critical for clear criteria to be established regarding ventilator withdrawal.…”

Section: Aligning Treatment With Patient Preferencesmentioning

confidence: 99%

Neurologists as primary palliative care providers

2016

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Purpose of review: To present current knowledge and recommendations regarding communication tasks and practice approaches for neurologists as they practice primary palliative care, including discussing serious news, managing symptoms, aligning treatment with patient preferences, introducing hospice/terminal care, and using the multiprofessional approach. Recent findings: Neurologists receive little formal palliative care training yet often need to discuss prognosis in serious illness, manage intractable symptoms in chronic progressive disease, and alleviate suffering for patients and their families. Because patients with neurologic disorders often have major cognitive impairment, physical impairment, or both, with an uncertain prognosis, their palliative care needs are particularly challenging and they remain largely uncharacterized and often unmanaged. Summary: We provide an overview of neuropalliative care as a fundamental skill set for all neurologists. Neurol Clin Pract 2016;6:40-48 P alliative care is specialized medical care for people with serious illness. With few curative options in neurology, most patients need to learn to live with their disease for a long time before they die with-or from-that disease. The newly proposed concept of distinguishing primary palliative care (skills that all clinicians should have) from specialist palliative care (palliative care specialty skills) 1,2 is particularly relevant to neurology, in which palliative and neurologic care needs coexist.In this review, we will follow 2 patients and their families through their illness trajectory (1 with amyotrophic lateral sclerosis (ALS) in the outpatient setting and 1 with severe stroke in the inpatient setting) and discuss proposed communication tasks. Rather than providing a comprehensive review of neuropalliative care, this article highlights some common issues faced by neurologists and aims to alert both neurologists and non-neurologists to the variety of palliative care issues in daily neurologic practice. For readers wanting a more in-depth and diseasespecific review of palliative care, we refer them to several recent reviews.

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“…A Cochrane Library meta-analysis (including three doubleblind randomized placebo controlled trials by (Miller, 2002) suggests that riluzole provides a 9% gain in the probability of surviving one year and adds approximately 2 months to patient survival. Carbamazepine Phenytion Magnesium (Miller, et al, 1999;Andersen, et al, 2005) Physiotherapy Physical exercise Massage Hydrotherapy (Miller, et al, 1999;Andersen, et al, 2005 (Miller, et al, 1999;Andersen, et al, 2005) Amitriptyline (Bradley et al, 2001) Home suction device Nebulisation (Andersen, et al, 2005) injections of botulinum toxin into parotid glands (Giess et al, 2000/ Winterholler et al, 2001) irradiation of the salivary glands (Iannaccone et al, 1996;Stalpers and Moser, 2002) Persistent saliva and bronchial secretions -Bulbar weakness -Respiratory complications Carbocisteine Propranolol Metoprolol (Newall, et al, 1996) Home suction device hydrobromide (Miller, et al, 1999/Andersen, et al, 2005 Reduced intake of diary products, alcohol, and caffeine. …”

Section: Pharmacological Treatmentmentioning

confidence: 99%

Motor Neuron Disease

Tallawy¹

2012

Neuromuscular Disorders

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Current management of ALS

Cited by 122 publications

References 13 publications

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients

Neurologists as primary palliative care providers

Motor Neuron Disease

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