Advance Care Planning and Healthcare Utilization in Patients With Amyotrophic Lateral Sclerosis: A Retrospective Chart Review.

Background: Amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disorder resulting in functional decline and death. Despite recent emphases on advance care planning (ACP), low rates of documentation of ACP are seen in this population. Objectives: This study aims to determine rates of advance directive (AD) documentation and whether having a documented AD or ACP discussion affects healthcare utilization for ALS patients. Design: Retrospective chart review. Setting/Subjects: 130 patients from a multidisciplinary clinic at one U.S. tertiary care medical center. Measurements: The presence of a completed AD uploaded to the electronic medical record; the documentation of ACP discussions; and rates of percutaneous endoscopic gastrostomy (PEG) placement, tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice utilization. Results: Overall rates of AD documentation in the electronic medical record were low at only 29.2%. Rates of PEG placement, tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice utilization did not vary between patients with and without AD documentation. However, patients with a documented ACP conversation were more likely to have a PEG placed and to utilize hospice. Conclusions: Our study indicates that while having a documented AD is not correlated to differences in healthcare utilization in patients with ALS, the benefit of ACP in this population is in having a dedicated conversation with patients and caregivers rather than focusing on completion of a static document.

Frontotemporal degeneration in the patient with amyotrophic lateral sclerosis: helping the caregiver cope.

Research in the previous decade has found a link between amyotrophic lateral sclerosis (ALS) and frontotemporal degeneration (FTD). It is estimated that as many as 50% of all people with ALS will have some degree of cognitive impairment and that approximately 10%-25% of patients will meet the Neary criteria for FTD. For the caregivers of persons with both ALS and FTD, the burden of care can be quite high. Nurses are in a position to help the caregivers cope.

Early respiratory insufficiency in the ALS patient: a case study.

Respiratory insufficiency is a problem that develops in nearly all people diagnosed with amyotrophic lateral sclerosis (ALS). Noninvasive positive pressure ventilation (NIPPV) is the treatment of choice for ALS patients with respiratory insufficiency. Forced vital capacity (FVC) is the test most commonly used to qualify ALS patients for NIPPV; however, some research suggests FVC may not be the best tool to measure early respiratory insufficiency in all patients with ALS. This case study introduces an ALS patient who had normal FVC results, symptoms of respiratory insufficiency, and abnormal nocturnal oximetry. After NIPPV initiation, the patient reported improved sleep and less daytime fatigue, which he associated with the start of NIPPV treatment.

Medicare hospice referral criteria for patients with amyotrophic lateral sclerosis: a need for improvement.

We conducted a retrospective review of 97 consecutive patients with amyotrophic lateral sclerosis (ALS) who were accepted into hospice care from a tertiary ALS center. Five patients met Medicare criteria at time of hospice enrollment. The mean number of hospice days was 85 (range, 1-534). All but 2 patients met hospice criteria proposed by the Columbia University ALS group. The present Medicare hospice criteria should be changed to reflect the reality of patients dying of ALS.