Palliative Care for People With Intellectual and Developmental Disabilities

{"title":"Palliative Care for People With Intellectual and Developmental Disabilities","authors":"Marsha Perales-Hull MD,&nbsp;Mary Scheerer MD","doi":"10.1016/j.jpainsymman.2025.02.095","DOIUrl":null,"url":null,"abstract":"<div><h3>Outcomes</h3><div>1. Participants will be able to understand more about the social, medical, legal and ethical concerns of patients with intellectual and developmental disabilities.</div><div>2. Participants will be able to appreciate how palliative care can be integrated into the care of people with intellectual and developmental disabilities to enhance their experiences nearing the end of life.</div></div><div><h3>Key Message</h3><div>Patients with intellectual and developmental disabilities (IDD) make up approximately 2% of the U.S population. Patients with IDD are now dying of similar conditions found in the general population. Few are given access to care at end-of-life. This presentation addresses how palliative care can be integrated into the care of a patient with IDD.</div></div><div><h3>Abstract</h3><div>Patients with intellectual and developmental disabilities (IDD) make up approximately 2% of the U.S population (5). Advances in medicine have increased life expectancy in patients with IDD and they are now dying of similar conditions found in the general population (3). However, few are given access to care at end-of-life (2). The objectives of this presentation are: 1) define what IDD is and why it is important to understand more about this patient population, 2) Identify legal concerns regarding patients with IDD, 3) Describe how hospice and palliative care can be integrated in their care, 4) Understand how an interdisciplinary approach to care can enhance the medical care of patients with IDD. Access to palliative and hospice care is a continuing disparity among this patient population and literature search shows that we need more research in how best to use palliative care to help patients with IDD and chronic life limiting illness.</div></div><div><h3>References</h3><div>1. Adam E, Sleeman KE, Brearley S, Hunt K, Tuffrey-Wijne I. The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliat Med. 2020 Sep;34(8):1006-1018. doi: 10.1177/0269216320932774. Epub 2020 Jun 17. PMID: 32552409; PMCID: PMC7596767. 2. Friedman SL, Helm DT, Woodman AC. Unique and universal barriers: hospice care for aging adults with intellectual disability. Am J Intellect Dev Disabil. 2012 Nov;117(6):509-32. doi: 10.1352/1944-7558-117.6.509. PMID: 23167489. 3. McGinley JM, Marsack-Topolewski CN. A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities. Glob Qual Nurs Res. 2022 May 11;9:23333936221087626. doi: 10.1177/23333936221087626. PMID: 35572367; PMCID: PMC9102126. 4. Moore CM, Pan CX, Roseman K, Stephens MM, Bien-Aime C, Morgan AC, Ross W, Castillo MC, Palathra BC, Jones CA, Ailey S, Tuffrey-Wijne I, Smeltzer SC, Tobias J. Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities. J Palliat Med. 2022 Dec;25(12):1857-1864. doi: 10.1089/jpm.2022.0384. Epub 2022 Sep 9. PMID: 36083260 5. How many people are affected/at risk for intellectual and developmental disabilities (IDDs)? | NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov) <span><span>https://www.nichd.nih.gov/health/topics/idds/conditioninfo/risk</span><svg><path></path></svg></span></div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"69 5","pages":"Pages e467-e468"},"PeriodicalIF":3.2000,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pain and symptom management","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0885392425001551","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}