Medical and Supportive Care Among People with ALS in the Months Before Death or Tracheostomy

• Published in: Journal of pain and symptom management 2009-10, Vol.38 (4), p.546-553
• Main Authors: Albert, Steven M., PhD, MSPH, Whitaker, Adriene, RN, MPH, Rabkin, Judith G., PhD, MPH, del Bene, Maura, NP-P, MS, Tider, Toby, MSW, O'Sullivan, Ita, NP-P, MS, Mitsumoto, Hiroshi, MD
• Format: Article
• Language: English
• Subjects: Amyotrophic lateral sclerosis; Amyotrophic Lateral Sclerosis - mortality; Amyotrophic Lateral Sclerosis - therapy; Anesthesia & Perioperative Care; Biological and medical sciences; Cerebrospinal fluid. Meninges. Spinal cord; Decision making; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; End of life decisions; Female; Health services; Hospitalization - statistics & numerical data; Humans; Male; mechanical ventilation; Medical sciences; mental health; Middle Aged; Nervous system (semeiology, syndromes); Neurology; New York - epidemiology; Pain Medicine; palliative care; Palliative Care - utilization; Pharmacology. Drug treatments; service use; Terminal Care - utilization; Tracheostomy; Tracheostomy - utilization; Treatment Outcome; Ventilation
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2008.11.013

Abstract People with amyotrophic lateral sclerosis (ALS) who choose tracheostomy demonstrate a strong and mostly consistent attachment to life from the point of diagnosis. It is unclear if these patients also use medical and health services to a greater degree than patients who decide against tracheostomy. In this research, patients with a high likelihood of dying over six months (forced vital capacity < 50% predicted) were followed monthly until death or tracheostomy with long-term mechanical ventilation (LTMV). Patient service use was measured by caregiver reports of 1) ALS-specific prosthetic devices, 2) allied health or medical services, 3) legal preparation for medical care or the end of life, and 4) medical care episodes. Caregivers also reported all patient prescription medications. At follow-up, 57 patients died and 14 elected to have tracheostomy and LTMV. Patients who opted for LTMV were younger and had higher household incomes. They were significantly more likely to use nasal ventilation, paid home care, and family or personal counseling over follow-up, and they were also more likely to remain on medications. The proactive orientation to health and desire to live despite severe disability reported for people choosing LTMV thus extends as well to more intensive use of medical and supportive care in the months before tracheostomy. A challenging task for clinicians is to acknowledge this strong desire to live while providing appropriate expectations for life after tracheostomy.