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

IF 3.2 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management Pub Date : 2025-04-10 DOI:10.1016/j.jpainsymman.2025.02.026

Eunsong Park MD MPH, Gretchen Bell MD, Elizabeth Silversten MBE CCRN HEC-C, Michael Wiersema MDiv BCC-PCHAC, Paul DeSandre DO FAAHPM, Carina Oltmann LCSW MSSW, Anita Sundaramoorthy MD

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引用次数: 0

Outcomes

1. Describe the constraints on the United States healthcare system in provision of long-term acute care to undocumented persons.

2. Recognize the critical role of multidisciplinary collaboration to advocating for optimal care for those whose options for care may be limited.

Key Message

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.

Abstract

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.

References

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:https://doi.org/10.1177/0148607112469818 3. Jeppesen PB. Spectrum of Short Bowel Syndrome in Adults. Journal of Parenteral and Enteral Nutrition. 2014;38(1S):8S-13S. doi:https://doi.org/10.1177/0148607114520994 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.

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安全网的漏洞：无证患者的生命维持治疗

Outcomes1。描述美国医疗保健系统在向无证人员提供长期急症护理方面的限制。认识到多学科合作的关键作用，为那些护理选择可能有限的人倡导最佳护理。关键信息在资源有限的支离破碎的卫生保健系统中，维持生命的治疗对于无证患者往往是不可行的。姑息治疗被叫到桌面上来，不仅是为了澄清护理的目标，也是为了共同阐明什么是可能的，并在什么是无法解决的痛苦中出现。摘要作为一个国家，我们尚未同意所有人都有获得医疗保健的权利。因此，针对弱势群体的医疗保健落在了一个拼凑而成的安全网上。这个安全网在为无证人员提供急性护理的能力上是有限的(1)。我们提出了这样一个案例，重点是倡导最佳护理的多学科合作。一位讲西班牙语的38岁女性狼疮患者因多处血栓性深静脉血栓而长期住院治疗。她的疗程因中毒性巨结肠而复杂化，需要结肠次全切除术和多次小肠切除术，导致回肠造口伴短肠综合征和全肠外营养（TPN）。她的残肠被怀疑需要几年时间才能达到吸收潜能。TPN可以维持生命，尽管有很大的并发症风险（2,3），但长期TPN带来了挑战，因为患者没有证件且居住在医院资助的集水区之外（3,4）。姑息治疗咨询，以澄清病人的护理目标。姑息治疗跨学科团队（IDT）为患者及其家人提供重要的心理-社会-精神支持，以应对他们对预后不确定和长期肠外营养日益增长的挑战的困扰。她的目标集中在尽可能长时间地照顾她的孩子，并尽可能保持正常的状态。姑息性IDT与医院的其他利益相关者合作，倡导目标一致的护理（1,5）。在伦理学召集的多学科会议上，护理小组确定了优化其肠内营养和断奶TPN的潜在选择。姑息性IDT仍然是患者维持生命治疗目标的倡导者，尽管在这方面存在后勤障碍。最终，患者转移到胃造口管喂养和动力剂，尽管她的回肠造口术持续高输出，并出院到长期急性护理机构。复杂出院和无证病人：日益增长的伦理问题。临床医学杂志，2012;23(4):299-307。2. Matarese勒。肠短综合征患者的营养和液体优化。肠外肠内营养杂志，2013;37(2):161-170。doi: https://doi.org/10.1177/0148607112469818 3。Jeppesen PB。成人短肠综合征谱。肠外肠内营养杂志，2014;38(1):8S-13S。doi: https://doi.org/10.1177/0148607114520994 4。张建军，张建军，张建军，等。医生对资源限制如何与生命末期决策的无效相关的看法：一项定性分析。医学伦理学杂志，2019;45(6):373-379。5. 杨J，弗洛雷斯G，伯曼s。为无证儿童提供拯救生命的医疗保健：争议和伦理问题。儿科。2004;114(5):1316 - 1320。

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来源期刊

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.