Graduating From Hospice Calls for a Continuum of Care
The terminology describing pre-death discharges from hospice care needs to be clarified and resources need to be improved
How can we help people survive what they were told to believe was an impossibility? When patients are brought on and admitted into hospice care services, they are informed that they have approximately six months or less to live. This comfort-driven philosophy of care is diametrically opposed to the traditional medical model of care, which was designed to promote and prolong life, no matter the cost.
Patients and their families are given packets and pamphlets that contain information about grief and how to manage their emotions, as well as feelings of anticipatory grief and loss. Hospice care comes at little to no cost as a part of the Medicare Hospice Benefit, paid for through payroll tax withholdings from employee earnings. Patients have essentially pre-paid for these services throughout their working years.
Most pre-death discharges from hospice occur because there is insufficient evidence to support continuous decline.
Despite the medical advancements that have led the United States to adopt the hospice care philosophy and low utilization rates, patients discharged from care before death are often not provided the proper resources to continue their journey.
Most pre-death discharges from hospice occur because there is insufficient evidence to support continuous decline. In essence: you're not dying fast enough. Medicare has specific guidelines that govern its ability to provide and reimburse for services rendered. If those criteria are no longer met, the patient is no longer eligible for care. To make matters worse, the Medicare term for making it out of hospice alive is to "graduate."
After Discharge, Struggling to Find Support
Pediatric cancer survivors who emerge from chemotherapy look forward to returning to a life of normalcy. However, many geriatric survivors of hospice were prepared, counseled, and equipped in more ways than one for their lives to end with hospice care at their bedside.
Approximately 20% of patients who select hospice care are still alive to be discharged, according to NPR. Despite the somewhat common nature of discharging patients from hospice, many providers leave patients and family members stranded to find alternative care support, resources, and counsel.
The Trauma of Leaving Hospice Care
For the 20% that experience this oxymoronic post-hospice survivor status, graduation hardly feels like an appropriate term to describe their condition. The origin of the word "graduation" comes from 15th-century alchemists who refined substances to a certain degree. In the late 15th century, it morphed into the activity of giving or receiving a degree.
The term is associated with academic achievement and honor, hardly an appropriate term to describe emerging (still in ill health) from a service designed to keep you comfortable and at peace until your body shuts down for the last time.
Leaving the safety net of this radically different type of care is traumatic and unwieldy, and it is family caregivers who fill this gap. Over 53 million family caregivers provide unpaid care each year to their loved ones. In 2017, this hidden group of kindhearted men and women accounted for 470 billion dollars (in hours of care provided).
End-of-life care is especially difficult for family members and patients: compounding the existing challenges of caregiving. When patients survive hospice, it undermines the integrity of the company's ability to properly admit patients on time and start them on a regimen of care that best suits their individual needs.
Predictive modeling and analytics have helped to pinpoint timelines that streamline patient care and schedule clinicians to visit with patients during their active dying or transition phase.
But what if that doesn't happen? Patients need a backup plan for care that they can rely on if their conditions improve or remain stagnant. Whether hospice agencies can provide that care or not, patients need a haven to continue their care, regardless of an arbitrary six-month prognosis.
'Survivor' Instead of 'Graduate'
Upon consuming online content about the next steps if a patient's condition improves, there's a gap in content. The text often skips from discharge to readmission: when a patient is reevaluated and meets the criteria to resume hospice care services. However, the in-between remains unsaid. Some go as far as to explain the process to appeal a discharge, but no agency has said what they (or anyone else) can do beyond stopping or restarting care.
Rather than defining hospice care as the final destination of care, we could rebrand it as an end-of-life continuum of care.
Patients deserve more dignified ways to have their needs met, including changing the terminology that we use to describe discharges from hospice.
One of the alternatives should be hospice care survivor or survivorship. "Survivor" is a more appropriate term than "graduate," because survivorship doesn't have an inherently positive connotation. Its definition proves that a person has lived through an event during which others have died.
Rather than defining hospice care as the final destination of care, we could rebrand it as an end-of-life continuum of care. It may be a stopping point or endpoint for many. However, it's important to validate the experience of all patients. This also means equipping patients and families for the possibility that they may die while in hospice care, but they may also be discharged before that point.
Patients need both tangible and intangible resources to cope with their conditions. Patients and their families also need emotional and spiritual support. But, in the event that their conditions plateau or improve, they need providers to guide them on their path.
When someone is discharged from hospice care, odds are slim that they're in good health. This prompts the necessity for a continuum of care that extends beyond hospice.