Taking Care of Patients with a Live Hospice Discharge #521

Background

A live hospice discharge can be defined as when a patient is disenrolled from 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 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 six 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, and services required). ⁴

Epidemiology

The National Hospice and Palliative Care Organization 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 discharge rates (11.5%–20.5%) depending on location, patient characteristics, and the business model of the hospice, with for-profit agencies having 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 six months; mortality rates were roughly 20% at 30 days and 40% at six 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 choose 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 requires complex assessment, care coordination, and clear and effective communication.