Graduating from hospice care
By Terre Mirsch
I stumbled upon another blog this weekend- one that immediately caught my interest because it is written by a hospice patient. In Til we meet again, Wanda shares her journey through hospice, checking off items from her bucket list and learning to live each day to its fullest. I found her spirit and willingness to openly share her journey with others inspiring; her zest for living is a force to be emulated by all of us. As I read through Wanda’s blog posts, where she discussed a variety of experiences and emotions, I was not surprised when she posed the question, “Is death the only way out of hospice?”
There are, in fact, several reasons that one may be discharged from hospice care:
- Moving out of the service area of the hospice provider. This may occur under circumstances when one is not available to receive services such as a move to another part of the country, an extended vacation, or if receiving care in a facility where the hospice does not have a contract. If hospice care is still needed, hospice care may be elected with another provider in the new location. In the case of a time limited vacation, the ‘home’ hospice may contract with a ‘traveling’ hospice to provide services during this time period.
- Requesting a transfer to other hospice. The Medicare Hospice Benefit allows for transfer from one hospice provider to another once per benefit period. Transfer of hospice may occur when one moves to a new service location. It may also occur when the hospice provider is not meeting patient or caregiver needs, or if care is provided in a facility that contracts with a different hospice agency.
- The hospice determines the behavior of the patient or others in the home is disruptive, abusive, or uncooperative and jeopardizes the ability of the hospice to provide safe and effective care. In this instance, the hospice follows policies and protocols to first attempt to resolve concerns. Discharge will occur as a last resort, only if a safe environment for care delivery cannot be established.
In the above circumstances, one continues to be eligible to receive hospice care. Additionally, a person receiving hospice care can choose to withdraw from care by “revoking” the hospice benefit at any time for any reason.
But what Wanda was likely asking when posing her question was, “Is it possible that I will get better? That my illness will not follow the ‘usual course’? That they are all terribly wrong? Or that a ‘miracle’ might occur?” Even in the face of serious illness, hope prevails for all of us. Her question leads us to the other reason that one might be discharged from hospice care:
- The hospice determines that the patient is no longer terminally ill.
While most that receive hospice care continue to experience progression of illness, it is indeed possible to ‘graduate’ from hospice care. The choice to receive hospice care does not automatically mean that decline or death will occur suddenly or rapidly. There are times when those on hospice may no longer need the care; when the uncertainty of life expectancy weighs in favor a longer prognosis; when despite what tests and lab results would predict, illness does not run its normal course. There are even times when the care of the hospice interdisciplinary team provides the support necessary to alleviate symptoms and for illness to stabilize. Increasing evidence suggests that those who receive hospice care may, indeed, live longer than those who do not receive hospice care.
Eligibility for hospice care occurs throughout the course of care and is a decision that is made based on the medical judgment of the physician and hospice medical director, in collaboration with the hospice team. When physical decline such as weight loss, increase in symptoms, decline in function, or medical complications are not evident, hospice will discuss discharge plans and will provide a formal notification as required by the Centers for Medicare and Medicaid Services. If you disagree with the decision for discharge, you have the right to request an independent review by Medicare’s Quality Improvement Organization (QIO).
The difference between those that receive hospice care and the rest of us is a known serious illness with an expectation that length of life is limited. For many this expectation proves to be true; others defy all odds. Given life’s uncertainties, we should all live each day to its fullest- following Wanda’s lead, checking off the items on our bucket list with no regrets.