A Hole in the Safety Net: Life-sustaining Treatment for Undocumented Patients

{"title":"A Hole in the Safety Net: Life-sustaining Treatment for Undocumented Patients","authors":"Eunsong Park MD MPH,&nbsp;Gretchen Bell MD,&nbsp;Elizabeth Silversten MBE CCRN HEC-C,&nbsp;Michael Wiersema MDiv BCC-PCHAC,&nbsp;Paul DeSandre DO FAAHPM,&nbsp;Carina Oltmann LCSW MSSW,&nbsp;Anita Sundaramoorthy MD","doi":"10.1016/j.jpainsymman.2025.02.026","DOIUrl":null,"url":null,"abstract":"<div><h3>Outcomes</h3><div>1. Describe the constraints on the United States healthcare system in provision of long-term acute care to undocumented persons.</div><div>2. Recognize the critical role of multidisciplinary collaboration to advocating for optimal care for those whose options for care may be limited.</div></div><div><h3>Key Message</h3><div>Life-sustaining treatment is often infeasible for undocumented patients within a fragmented healthcare system constrained by limited resources. Palliative Care is called to the table, not only to clarify goals of care, but also to collaboratively elucidate what is possible and to be present in the distress of what is unresolvable.</div></div><div><h3>Abstract</h3><div>As a country, we have not agreed that all persons have a right to healthcare. As a result, healthcare for the vulnerable falls upon a safety net that is a patchwork. This safety net is limited in its ability to provide acute care to undocumented persons (1). We present such a case, focusing on the multidisciplinary collaboration critical to advocating for optimal care. A Spanish-speaking 38-year-old woman with lupus had a prolonged hospitalization which began with multiple occlusive DVTs. Her course was complicated by toxic megacolon requiring subtotal colectomy and multiple small bowel resections, resulting in an ileostomy with short-gut syndrome and total parenteral nutrition (TPN). Her remnant bowel was suspected to require a few years to reach its absorbative potential. TPN can be life-sustaining despite a substantial risk of complications (2,3), however long-term TPN posed challenges because the patient was undocumented and resided outside the hospital's funded catchment area (3,4). Palliative Care was consulted to clarify the patient's goals of care. The Palliative interdisciplinary team (IDT) provided vital psychosocial-spiritual support to the patient and her family amidst their distress concerning her uncertain prognosis and growing challenges to securing long-term parenteral nutrition. Her goals focused on caring for her children for as long as possible and in as functional a condition as was possible. The Palliative IDT collaborated with other stakeholders in the hospital to advocate for goal-concordant care (1,5). In a multidisciplinary meeting convened by Ethics, the care team identified potential options for optimizing her enteral nutrition and weaning the TPN. The Palliative IDT remained an advocate for the patient's goal of life-sustaining treatment, despite logistical obstacles to this end. Eventually, the patient was transitioned to gastrostomy tube for feeding and motility agents, though with sustained high output from her ileostomy, and discharged to a long-term acute care facility.</div></div><div><h3>References</h3><div>1. Parsi K, Hossa N. Complex discharges and undocumented patients: Growing ethical concerns. The Journal of Clinical Ethics. 2012;23(4):299-307. 2. Matarese LE. Nutrition and Fluid Optimization for Patients With Short Bowel Syndrome. Journal of Parenteral and Enteral Nutrition. 2013;37(2):161-170. doi:<span><span>https://doi.org/10.1177/0148607112469818</span><svg><path></path></svg></span> 3. Jeppesen PB. Spectrum of Short Bowel Syndrome in Adults. Journal of Parenteral and Enteral Nutrition. 2014;38(1S):8S-13S. doi:<span><span>https://doi.org/10.1177/0148607114520994</span><svg><path></path></svg></span> 4. Close E, White BP, Willmott L, et al. Doctors’ perceptions of how resource limitations relate to futility in end-of-life decision making: a qualitative analysis. Journal of Medical Ethics. 2019;45(6):373-379. 5. Young J, Flores G, Berman S. Providing life-saving health care to undocumented children: controversies and ethical issues. Pediatrics. 2004;114(5):1316-1320.</div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"69 5","pages":"Pages e421-e422"},"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/S0885392425000867","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}