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.

1. Robberecht, W, Philips, T. The changing scene of amyotrophic lateral sclerosis. Nat Rev Neurosci. 2013;14:248-264.
Google Scholar | Crossref | Medline | ISI2. Astrow, AB, Sood, JR, Nolan, MT, et al. Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis. J Med Ethics. 2008;34(9):664-668.
Google Scholar | Crossref | Medline | ISI3. Levi, BH, Simmons, Z, Hanna, C, et al. Advance care planning for patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Scler Frontotemporal Degener. 2017;18:388-396.
Google Scholar | Crossref | Medline4. Albert, SM, Murphy, PL, Del Bene, ML, Rowland, LP. A prospective study of preferences and actual treatment choices in ALS. Neurology. 1999;53(2):278-283.
Google Scholar | Crossref | Medline5. Ganzini, L, Johnston, WS, Silveira, MJ. The final month of life in patients with ALS. Neurology. 2002; 59(3): 428-431.
Google Scholar | Crossref | Medline6. Morrison, RS . Advance directives/care planning: clear, simple, and wrong. J Palliat Med. 2020;23(7):878-879.
Google Scholar | Crossref | Medline7. Rechtman, L, Jordan, H, Wagner, L, et al. Racial and ethnic differences among amyotrophic lateral sclerosis cases in the United States. Amyotroph Lateral Scler Frontotemporal Degener. 2015;16(1-2):65-71.
Google Scholar | Crossref | Medline8. Mehta, P, Kaye, W, Raymond, J, et al. Prevalence of amyotrophic lateral sclerosis - United States, 2015. MMWR Morb Mortal Wkly Rep. 2018;67(46):1285-1289.
Google Scholar | Crossref | Medline9. Yadav, KN, Gabler, NB, Cooney, E, et al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff. 2017;36(7):1244-1251.
Google Scholar | Crossref | Medline10. Crockford, C, Newton, J, Lonergan, K, et al. ALS-specific cognitive and behavior changes associated with advancing disease stage in ALS. Neurology. 2018;91(15):e1370-e1380.
Google Scholar | Crossref | Medline11. Benbrika, S, Desgranges, B, Eustache, F, Viader, F. Cognitive, emotional and psychological manifestations in amyotrophic lateral sclerosis at baseline and overtime: a review. Front Neurosci. 2019;13:951.
Google Scholar | Crossref | Medline12. Miller, RG, Jackson, CE, Kasarskis, EJ, et al. Quality standards subcommittee of the American academy of neurology. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the quality standards subcommittee of the American academy of neurology. Neurology. 2009;73(15):1218-1226.
Google Scholar | Crossref | Medline | ISI13. EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis, Andersen, PM, Abrahams, S, et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)--revised report of an EFNS task force. Eur J Neurol. 2012;19(3):360-375.
Google Scholar | Crossref | Medline | ISI14. Gabbard, J, Pajewski, NM, Callahan, KE, et al. Effectiveness of a nurse-led multidisciplinary intervention vs usual care on advance care planning in older adults in an accountable care organization: a randomized clinical trial. JAMA Intern Med. 2021;181(3):361-369.
Google Scholar | Crossref | Medline15. McMahan, RD, Tellez, I, Sudore, RL. Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? a scoping review. J Am Geriatr Soc. 2021;69:234-244.
Google Scholar | Crossref | Medline

留言 (0)

沒有登入
gif