Background: A live hospice discharge can be defined as when a patient is disenrolled in hospice care prior to death (1). This can occur for many reasons, but most often due to a change in goals of care, an improvement in the patient’s prognosis, or an acute medical situation that cannot be adequately addressed under hospice care (1). A live hospice discharge is a major care transition in which patients may lose key hospice services upon which they have depended. Emergency room (ER) visits and hospitalizations are common after live hospice discharges and often result in patients being cared for by clinicians who are unfamiliar with their hospice history (2,3). This Fast Fact is written for clinicians seeing these patients in the hospital or outpatient setting.

Reasons patients have a live hospice discharge: Upon hospice admission, the hospice agency should provide education on eligibility criteria within the Medicare Hospice Benefit. This includes that live discharges can be initiated by the hospice agency or by the patient or their activated decision-maker.   

• Hospice-initiated discharge: Hospice agencies are obligated to evaluate the patient’s prognostic eligibility for hospice ongoingly. If the patient is no longer showing objective signs to suggest a prognosis of 6 months or less, they must be decertified or discharged (2-4). In these situations, hospice agencies should tell the patient or surrogate about the discharge with sufficient time to obtain other care. The hospice should provide the next clinicians a documented hand-off summarizing the care plan (e.g., symptoms, orders, treatments, services required) (4).
• Patient-initiated discharge: patients and/or their decision makers may initiate a hospice discharge if they decide to pursue life-prolonging interventions such as re-hospitalizations and disease-directed therapies, a process referred to as a revocation (3). Hospice agencies should inform patients and their families about the revocation process and how it could impact their care. 

Epidemiology: The National Hospice and Palliative Care Organization (NHPCO) reported in 2022 that 17.3% of Medicare patients enrolled in hospice had live discharges (5). National studies have found a wider range of live discharges (11.5% to 20.5%) depending on location, patient characteristics, and the business model of the hospice – for-profit agencies have higher live discharge rates than not-for-profit agencies (1,6,7). Contributing factors to hospice-initiated discharges include difficulty determining prognosis, fear of audits, market competition, poor access to medical care prior to hospice initiation, and contracting challenges with inpatient facilities (8,9). Black patients, Hispanic patients, and those with a non-cancer diagnosis (e.g. dementia, heart disease) were more likely to revoke hospice (1,6,7,10).

Care outcomes: Among patients with Medicare, about one-third of those discharged from hospice were hospitalized within 30 days and almost half within 6 months; mortality rates were roughly 20% at 30 days and 40% at 6 months (11).  Many patients and their families found the hospice discharge process a distressing experience (12). Patients felt lonely, less secure, abandoned, and some reported physical decline. There was also frustration around the uncertainty of the discharge process and questions around next steps (13,14).

Post-hospice discharge care approach: When a patient presents to clinic or a hospital after a hospice live discharge, the first step is to explore the patient’s experience with hospice. Ideally the hospice agency should reach out and inform clinicians of the care plan and reason for discharge. If that does not happen, clinicians should contact the hospice agency (15). Additional history that should be gathered includes what hospice care components patients/families found beneficial and what concerns they had with the hospice experience (14). These are often very sick patients who need a complete symptom assessment to determine next steps. The patient and family may also need emotional support to process the discharge experience. Reassessing how the patient’s values may have changed is important to develop a new treatment plan as is reassessing their understanding of hospice care (16).

Patients discharged from hospice for lack of disease progression are likely to have different needs than patients who chose to disenroll. For patients whom hospice has initiated the discharge, the major issues may have to do with finding a new primary care clinician, obtaining or paying for necessary durable medical equipment, and replacing the extra psychosocial supports that hospice provided (3). It is important to ensure patients have a prescribing provider who is comfortable managing symptom-based medications such as opioids and benzodiazepines. Palliative care consultation is recommended.

Summary: Clinicians may care for patients who either were disenrolled from hospice or revoked hospice. When encountering these patients, avoid making assumptions of the patient’s goals of care or needs just because they were once enrolled in hospice. This is a vulnerable population that require complex assessment, care coordination, and clear and effective communication.

References: 

1. Luth EA, Brennan C, Hurley SL, et al. Hospice Readmission, Hospitalization, and Hospital Death Among Patients Discharged Alive from Hospice. JAMA Netw Open. 2024;7(5):e2411520.
2. Wu, Serena; Volker, Deborah L. PhD, RN, FAAN. Live Discharge From Hospice: A Systematic Review. Journal of Hospice & Palliative Nursing 21(6):p 482-488, December 2019.
3. Wladkowski SP, Wallace CL. The Forgotten and Misdiagnosed Care Transition: Live Discharge From Hospice Care. Gerontology and Geriatric Medicine. 2022;8.
4. National Hospice and Palliative Care Organization. 2022 Edition: Understanding and Managing Live Patient Discharge in Hospice Care. Alexandria, VA: National Alliance for Care at Home. Published September 2022. Accessed May 15, 2025
5. 5. National Hospice and Palliative Care Organization. 2024 Edition: Hospice Facts and Figures. Alexandria, VA: National Alliance for Care at Home. Published September 2024. Accessed April 4, 2025.
6. 6. Dolin, Rachel, et al. “Do live discharge rates increase as hospices approach their Medicare aggregate payment caps?.” Journal of pain and symptom management3 (2018): 775-784.
7. 7. Teno, Joan M., et al. “A national study of live discharges from hospice.” Journal of palliative medicine10 (2014): 1121-1127.
8. 8. Gianattasio, Kan Z., et al. “Medicare hospice policy changes and beneficiaries’ rate of live discharge and length-of-stay.” Journal of pain and symptom management3 (2023): 162-172.
9. 9. Dolin, Rachel, et al. “Factors driving live discharge from hospice: Provider perspectives.” Journal of pain and symptom management6 (2017): 1050-1056.
10. Luth, Elizabeth A., et al. “Race, ethnicity, and other risks for live discharge among hospice patients with dementia.” Journal of the American Geriatrics Society 68.3 (2020): 551-558.
11. 11. Zhang Y, Shao H, Zhang M, et al. Healthcare utilization and mortality after hospice live discharge among Medicare patients with and without Alzheimer’s disease and related dementias. J Gen Intern Med 2023;38(10):2272–2278.
12. Clayton, Margaret F., et al. “Live hospice discharge: experiences of families, and hospice staff.” Patient education and counseling 104.8 (2021): 2054-2059.
13. 13. Watson Campbell, Rebeka. “Being discharged from hospice alive: The lived experience of patients and families.” Journal of palliative medicine6 (2015): 495-499.
14. 14. National Hospice and Palliative Care Organization. NHPCO Managing Live Patient Discharges in Hospice Care. Published September 2022. Accessed April 2, 2025.
15. Wallace, Cara L., and Stephanie P. Wladkowski. “It’s past time for an upgrade to the Medicare hospice benefit.” Health Affairs Forefront (2024).
16. Wladkowski SP, Hunt LJ, Luth EA, Teno J, Harrison KL, Wallace CL. Top Ten Tips Palliative Care Clinicians Should Know About Hospice Live Discharge. Journal of palliative medicine. 2024 Sep 18.

Author Affiliation: 1Icahn School of Medicine at Mount Sinai, New York, NY, USA; 2Saint Louis University, St. Louis, MO, USA; 3 Washington University, St. Louis, Missouri, USA.
Conflicts of Interest: None to report.
Version History: Originally edited by Sean Marks MD; first electronically published in September 2025.