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Respiratory Insufficiency in Patients with ALS at Or Near the End of Life

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Respiratory Insufficiency in Patients with ALS at Or Near the End of Life Amyotrophic lateral sclerosis (ALS) is a devastating motor neuron disease causing progressive paralysis and eventual death, usually from respiratory failure. Treatment for ALS is focused primarily on optimal symptom manage- ment because there is no known cure. Respiratory symptoms that occur are related to the disease process and can be very distressing for patients and their loved ones. Recommendations on the management of respira- tory insufficiency are provided to help guide clinicians caring for patients with ALS. Hospice and Palliative Care Feature The Management of Andrea L. Torres, APN, CNP Respiratory Insufficiency in Patients With ALS at or Near the End of Life 186 Home Healthcare Nurse www.homehealthcarenurseonline.com Copyright © 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Introduction 2007). By the time most patients are definitively Amyotrophic lateral sclerosis (ALS) is a devastat- diagnosed, they are often already in an advanced ing motor neuron disease characterized by pro- stage of the disease (Wood-Allum & Shaw, 2010). gressive muscle weakness eventually leading to Life expectancy is typically 3-5 years from the paralysis and death. The onset typically occurs onset of symptoms (Elman et al., 2007). in late middle age, with men slightly more af- fected than women (Wood-Allum & Shaw, 2010). Palliative Care Approaches for ALS Patients The majority of cases of ALS have no known Due to the progressive nature of ALS, early pal- cause; about 10% of ALS cases are linked to a fa- liative care is an essential component in the milial trait (Ferguson & Elman, 2007). Treatment treatment plan, and should begin as soon as the is primarily focused on optimal symptom man- diagnosis of ALS is confirmed (Elman et al., 2007). agement and palliative care as the etiology and Palliative care aims to prevent and alleviate suf- pathophysiology remain unknown, and there is fering while improving quality of life for patients no cure for the disease to date (Elman et al., 2007; and their families (Morrison & Morrison, 2006). It Wood-Allum & Shaw, 2010). is a holistic approach to care, tending to the There are many theories about causative fac- physical, spiritual, and psychosocial needs of tors of ALS, such as toxic accumulations of gluta- patients who are living with advanced disease mate, oxidative stress, and genetic links that are (McCluskey, 2007). As ALS progresses into the currently being researched; the evidence sug- terminal phase, patients then qualify for hospice gests it is a polyfactorial, multigenic disease care. (Corcia & Meininger, 2008; Valente & Karp, 2007). In the United States, hospice care is a formal The theory that glutamate toxicity results in neu- and reimbursed program of palliative care that ronal cell death led to the development of rilu- always involves an interdisciplinary team, in- zole, the only medication approved for treatment cluding a physician, nurse, hospice aide, social (Ferguson & Elman, 2007). Although the drug is worker, chaplain, volunteers, and at times other very expensive—costing about $10,000 per year— members of the healthcare team such as physi- this medication slows the disease’s progression cal, occupational, speech, and respiratory ther- and can extend life by at least 2 to 3 months apists. Alternative therapies such as music (Ferguson & Elman, 2007; Miller et al., 2009). therapy, art therapy, and massage are provided The typical disease course varies between to patients. In addition, hospice provides medi- patients, but the most common presentation is a cal equipment, supplies, and medications to unilateral weakness involving one body segment manage symptoms. To qualify for hospice care, that progressively becomes worse over time and physician certification verifying an expected spreads to other areas of the body (Ferguson & prognosis of 6 months or less if the disease runs Elman, 2007). Approximately one-third of ALS its typical course is necessary. The present Medi- patients present with symptoms of difficulty care criteria for hospice care specific to ALS speaking or swallowing known as bulbar dys- patients are listed in Supplemental Digital Con- function (Ferguson & Elman, 2007). Signs and tent 1, http://links.lww.com/HHN/A7. According symptoms of ALS that indicate bulbar weakness to the Medicare criteria, patients must display a include dysarthria, dysphagia, tongue atrophy or rapid progression of the ALS disease process and weakness, drooling, and muscle twitches called have significant nutritional or respiratory im- fasciculations (Ferguson & Elman, 2007). Usually pairment meeting all of the characteristics listed bowel and bladder control and eye movements to be in the terminal stage of the disease process are spared by the disease, but not always (Mitsu- (McCluskey & Houseman, 2004). Medicare’s cri- moto & Rabkin, 2007). teria are viewed as being too stringent by many There is no definitive diagnostic test for ALS; clinicians who work with ALS patients (McClus- diagnosis is based on the loss of both upper and key & Houseman, 2004; Mitsumoto et al., 2005). It lower motor neurons in multiple body segments is recommended that readers check with their (Ferguson & Elman, 2007). The diagnostic pro- fiscal intermediary Medicare administrator con- cess can be a difficult and lengthy process as tractors for any ALS-specific policies. patients undergo multiple diagnostic tests to rule Because the majority of patients with ALS out other disease processes (Ferguson & Elman, die from respiratory failure, it is important for vol. 30 • no. 3 • March 2012 Home Healthcare Nurse 187 Copyright © 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Due to the progressive nature of ALS, early palliative care is an essential component in the treatment plan, and should begin as soon as the diagnosis of ALS is confirmed. Palliative care aims to prevent and alleviate suffering while improving quality of life for patients and their families. It is a holistic approach to care, tending to the physical, spiritual, and psychosocial needs of patients who are living with advanced disease. As ALS progresses into the terminal phase, patients then qualify for hospice care. clinicians working with these patients to effec- Diagnostic Testing to Evaluate Respiratory tively manage their respiratory symptoms as the Muscle Strength in Patients With ALS disease progresses. The following literature re- There are a number of tests available to measure view provides evidence-based recommendations inspiratory respiratory muscle function; the for the management of respiratory insufficiency forced vital capacity (FVC) is the most commonly experienced by patients with ALS at and near the used (Heffernan et al., 2006). Using a spirometer, end-of-life. patients are instructed to take the deepest breath possible and then exhale forcefully as long as ALS: Management of Respiratory possible and the volume of air exhaled is mea- Insufficiency sured (Gregory, 2007). Patients with ALS have Overview of Respiratory Insufficiency measurements taken both sitting upright and in Patients with ALS lying supine (Andersen et al., 2007; Gregory, Because the majority of patients with ALS die 2007). An abnormal FVC value is anything less from respiratory failure, interventions to help than 80% of predicted (Gregory, 2007). Another manage respiratory insufficiency and improve method used is the maximal inspiratory pres- control of symptoms related to breathing are sure (MIP). The patient is instructed to inhale crucial (Miller et al., 2009). Respiratory insuffi- against an occluded airway and the pressure is ciency in ALS is caused by the disease process then recorded by a manometer (Gregory, 2007). itself; death of the nerve cells that innervate the An MIP value of less than -60 cm H2O implies respiratory muscles leads to weakness of the inspiratory muscle weakness (Gregory, 2007). muscles of inspiration, expiration, the accessory For a quick reference for diagnostic tools, see muscles, and the upper airway muscles (Gregory, Table 1. 2007). Weakness of the diaphragm, the most im- The MIP value may be difficult to interpret for portant muscle for inspiration, often leads to ALS patients who have severe oral muscle weak- nocturnal hypoventilation in part because the ness because their value may be low simply due supine position during sleep further negatively to difficulty performing the test (Gregory, 2007). impacts a weakened diaphragm (Gregory, 2007). The sniff nasal pressure (SNP) is a newer method Patients with ALS often may report the following to measure inspiratory respiratory muscle strength initial symptoms: morning headaches, orthopnea, that is easier for patients with oral muscle weak- daytime sleepiness, and poor sleep (Gregory, ness to perform (Gregory, 2007). A pressure trans- 2007). As the disease progresses reports of a ducer is inserted into one nostril and the patient weak cough, difficulty blowing the nose and is asked to sniff (Gregory, 2007). The pressure clearing secretions, and dyspnea at rest occur obtained from sniffing correlates well with the because of advanced respiratory musculature transdiaphragmatic pressures and has shown to weakness (Elman et al., 2007; Gregory, 2007). be a more reliable indicator of respiratory func- Signs of respiratory insufficiency that may be tion in patients with ALS (Gregory, 2007; Miller et seen on clinical exam may include tachypnea and al., 2009). An SNP value of less than 65 cm H2O is the
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