Abstract
Outcomes1. Through this case study, participants will find that patient care advocacy, even at the very end of life, can yield collaborative and creative approaches in providing patient-centered care. 2. This case study demonstrates that concurrent hospice care may be the most appropriate model of end-of-life care for patients with terminal anorexia. Key MessageA case study from a Midwestern academic medical center shows that advocating for concurrent hospice care for a patient with terminal anorexia may help mitigate the challenges and controversy in defining and diagnosing the condition while still acknowledging a patient's poor prognosis and patient and family need for supportive services. AbstractSevere Enduring Anorexia Nervosa (SE-AN), also known as “terminal anorexia,” is a rare, but life-threatening progression of restrictive and other eating-disordered behaviors. Recently clinical characteristics of SE-AN have been proposed with ongoing debate about the appropriateness and utilization of such guidelines. Those who work in palliative care and end of life are tasked with attenuating the suffering of patients with life-limiting or terminal illnesses. That challenge is heightened when the patient's condition is uncommon or when the care team has little experience with a particular clinical context. Given the relative youth of those with SE-AN coupled with the supposition of a terminal psychiatric disorder can bring discomfort to those charged with caring for patients with SE-AN. A case report from a Midwestern academic medical center about a 20-year-old woman with SE-AN provides an example of end-of-life care for this vulnerable population that is not guideline-focused, but patient-centered. When she enrolled in hospice, the hospice organization offered to cover ongoing treatment while simultaneously providing supportive care services to her and her family. She ultimately died on hospice, but the concurrent care model offers a pathway that acknowledges the care team's concern about poor prognosis while supporting any pivot toward life-prolonging treatment and simultaneously supporting the patient and family through this difficult scenario. KeywordsModels of Palliative Care Delivery / Advocacy / Policy/ Regulations