In the hospice team meetings patient categories are reviewed, usually in the same order each week. We discuss those who have just died, new admissions, anyone recently transferred from their residence to our inpatient hospice facility (and back again), the focus patients, the . . .
Huh? What’s focus patient?
Hey, we try to focus on every patient! But sometimes one of the staff—a nurse or chaplain—has an unexpected issue with a patient or caregiver that may be helped by feedback from the whole team. For example, a patient may wish to take a weekend trip with their family and will be temporarily out of our service area. We might have a quick “focused” discussion about how to make sure their mini-vacation is possible. That can include contacting another hospice along their route to give assistance if there’s a problem. Other “focus” discussions may involve family conflicts or exploring different medications because of unexpected allergies. There are many one-time-only concerns or situations that become a “focus.”
I remain hyper-attentive in the discussions, from the recent deaths to the occasional focus patient. But, gulp, I drift off a smidgen when the team covers “revocations.” I might glance at email (bad Larry), or ponder the day’s to-do list (bad Larry).
What’s a revocation?
It’s when a patient leaves hospice care.
How can that be! This is hospice! This is the end-of-the-line! Aren’t the patients that depart hospice also known as people who have recently died?
A patient can revoke whenever they want. Though there are forms to complete (surprise, eh?), it is relatively easy.
Why would someone leave a hospice?
In a moment, I’ll tell you the most common reasons for a revocation, but here are other possibilities:
Here’s where I hope none of my bosses ever read this essay. On rare occasions, a patient may leave a hospice because she or he (or a family member) had a bad experience with one of the staff: a caregiver may feel their questions/concerns were ignored or responses to a request were delayed. Maybe the patient was at fault for the “problem,” but blamed hospice. Maybe the hospice coulda/shoulda done something better or different. Conflicts between hospices and its patients/families are very, very infrequent, but they can happen. Regardless of who’s at “fault,” if a patient or caregiver prefers to be served by another hospice . . . they can take that step. No penalties. No recrimination. No problems. After all, hospice care has a long tradition (along with legal guidelines) of giving patients and their family as much control as possible with the decisions and directions for comfort care.
The Patient’s Not Ready…
In a typical month, a few new patients quickly revoke because they weren’t ready for hospice. Even though their doctor recommended hospice, and even though they have a terminal illness, they simply aren’t emotionally or spiritually ready to shift from “curing the illness” to “comfort care.” Maybe they didn’t believe it when the oncologist announced there’s nothing more medicine can do. Maybe a family member searched the web and found a miraculous cure that happened to someone else, somewhere else. Why can’t you be a miracle too? And so, days or even hours after starting hospice care, the patient signs a revocation form in order to participate in an experimental treatment. Suddenly, she or he is a former hospice patient. Again, no penalties, no problem.
The Patient’s No Longer Appropriate…
Sometimes a patient stabilizes to the point that they don’t qualify for the hospice benefits. Periodically, a hospice rigorously evaluates every patient to determine if they are “appropriate” for the extensive care hospice provides. When that happens, a hospice works with the patient and family to ensure that good health care continues, but the hospice will no longer be involved. Is it easy for a stable patient to transition out of hospice? As before, a simple answer: yes.
But Many Revoke Because…
In my limited experience, the most likely reason for revoking is when a patient needs a medical procedure not connected to a primary diagnosis. For example, if you’re in hospice because of life-limiting COPD (a respiratory illness), but must have foot surgery, you revoke the hospice benefit during the surgery and post-operative hospital stay. Or patients with heart-related diseases break bones and go to an emergency room. Or patients with dementia get pneumonia and are hospitalized. Or . . . well, there are endless examples. Leaving hospice for “other” health issues and then re-entering occurs with many patients . . . but with no penalties when they return days or weeks later.
Years ago, when my job at another hospice included introducing the hospice benefit to potential patients, I stressed they could easily leave hospice care. No one considers hospice unless facing a serious and terminal diagnosis, but they are still among the living!
Whether under the care of a hospice, or as fit as the proverbial fiddle, everyone deserves to understand the choices and options before them. Everyone deserves to have control over her or his life.
A hospice staff compassionately takes this final journey with patients and their families. But every journey has detours. If a patient needs to “revoke” hospice care, the nurses, social workers and others will help make that possible.
And they will welcome you back with open arms.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
**No, the 3 Rs aren’t the olde reading, ‘riting, and ‘rithmatic (ha!), but the hospice-based 3 Rs of Revocation, Respite, and Recertification. I’ve posted some thoughts on Respite. And also Recertification.by