Revocations of the hospice benefit can have serious adverse effects on patients and families, as well as providers. Understanding the causes and repercussions of these incidents can help operators prevent them, when appropriate.
Live discharges can occur for a number of reasons, including the patient or family changing their minds about receiving hospice care, or the patient improves and no longer needs those services. A patient may choose to resume curative treatment, or they might move out of the hospice’s service area.
In some cases, a frightened patient or a patient in crisis may call an ambulance or visit and emergency room, prompting revocation of the Medicare Hospice Benefit in order to receive hospital care.
Causes of revocations
When it comes to revocations, fear and a lack of education about hospice are often significant factors, Sara Sprague, manager of clinical quality improvement, for Providence Hospices of Orange County in California, said at the National Hospice and Palliative Organization’s (NHPCO) Annual Leadership Conference.
“Families don’t fully understand hospice and the scope of hospice, what it provides. There’s also a lack of clarity on disease progression and prognosis, caregiver burden, distress, or difficult to manage symptoms,” Sprauge said at the conference. “You also have caregivers’ reluctance to administer morphine, and the response time of the hospice when compared to 911, and the family’s difficulty in accepting the patient’s own mortality. What’s interesting here when you look at these items is that some of them are within the control of hospice.”
About 15.4% of patients who were discharged from hospice in 2020 did so while they were still alive, according to NHPCO. Of those, 5.7% were due to revocations, and 2.2% transferred to a different hospice.
A small percentage of live discharges occur due to a patient moving to a new area or because they are no longer terminally ill. Less than 1% of live discharges are “for-cause,” NHPCO reported. This means that patient or family behavior made it unsafe to continue care in the home.
Impact on patients and families
After a revocation, patients may feel more isolated after breaking the often close ties they often develop with their interdisciplinary care teams, Sprague said. Sometimes families don’t understand the full ramifications of revoking the benefit, including the end of those relationships.
Another likely outcome is that the patient returns to the hospital. Some will die as inpatient despite stating their wishes to spend their last days at home.
“When they go into the acute realm, and they’re seeking aggressive treatment, the whole picture changes for them. They may be exposed to more therapies and things that they never elected prior or had hoped to avoid in their course of disease progression,” Sprague said. “The second is that aggressive symptom management, whatever regimen they were on, will more than likely be interrupted, changed, which of course, anybody in our line of work knows could put them at risk for a symptom crisis.”
The impact on providers can also be profound. For one, a live discharge means lost revenue. It may also attract the attention of regulators.
The U.S. Centers for Medicare & Medicaid Services (CMS) and the U.S. Department of Health & Human Services Office of the Inspector General (OIG) has been closely eyeing live discharge rates. These have become a frequent trigger for audits, which can be expensive and time consuming for a hospice.
The discharged patient’s care team may also need some additional support. They may mourn the lost relationship with the patient and family or blame themselves for the revocation, Sprague indicated.
That said, circumstances exist in which a live discharge is appropriate, according to Dr. Martina Meier, a physician with Providence TrinityCare Hospice.
“If truly the goals of care change and are not being met by providing hospice services, then a life discharge might be just the right thing for a patient and their family,” Meier said at the NHPCO conference.
While maintaining respect for patient choices, hospices can take some steps to prevent revocations by patients who still need hospice care.
One is to understand some of the demographic and social factors that can put patients at risk of a revocation, Meier indicated.
For example, Black and Latino patients are more likely to revoke. Patients with certain conditions — such as dementia, congestive heart failure or a cerebral vascular accident, among others — are more likely to disenroll than cancer patients, Sprague said.
Education is also key. Patients and families should have clear and simple instructions on what to do if they get scared or if a crisis occurs. They should also receive effective education on what hospice care entails, as well as the likely trajectory of their illnesses.
“So maybe just an extra touch, reaffirming the goals of care. If we can direct a physician to visit these patients who are considered higher risk of revocation a little bit earlier in the course, and really for the whole team to provide better education about hospice to people who are at risk for revocation,” Meier said. “There is a need to, on an ongoing basis, communicate better about disease progression and prognosis.”
Another key strategy is to ensure the hospice is collaborating and coordinating care with the patient’s prior providers as well as EMS services in the area, Meier added. Leveraging telehealth to ensure easy, immediate 24/7 access to a hospice clinician can also go a long way toward reassuring patients and families.
“One thing that we found really helpful is to actively demonstrate that we are collaborating with prior key providers of health care,” Meier said. “I think it behooves me to share with the patient and family that I am collaborating with that person of trust, who they might otherwise feel is being left out of a loop.”