A colleague writes: "... we often are challenged in meeting physical needs alone, much less holistic needs."
I respond: Medicare's Conditions of Participation are clear - the hospice must meet the patient's and family's physical, emotional, and spiritual needs (see 418.100 below).
Hospice nurses aren't expected to do everything, and shouldn't try - that's what the IDT is for.
The colleague continues: "...few of us have the ability to meet both physical and emotional needs given our workload..."
I think my colleague hit the nail on the head!
We need to talk about crappy corporate hospices that abuse their staff.
They most often do it with high case loads, making case managers cover off-hours, and urgent demands to "drop everything" at the last minute for an admission, but they also have plenty of other ways...
Here's what I think - there are 3 important questions anyone should ask up front when assessing a hospice, whether as a potential patient and family or as a possible employee:
Does the hospice have enough staff?
Are they (the staff) any good?
Who are they (the staff)?
If they don't have enough staff, the rest doesn't matter.
If they won't openly answer the questions, they've told you plenty about who they are.
Here's another important question - who owns you?
There's a fundamental difference between the original vision of community-based not for profit hospice developed in the mid-late 1970's that served as the model for the Medicare hospice benefit, and the for profit corporate hospice that now dominates our space. (pdf 'Facts & Figures: Hospice Care in America (August 20, 2020) page 21, figure 22 "Tax Status")****
Corporate hospice is the greatest threat to effective and compassionate care in serious illness at end of life.
Corporate hospice is crappy hospice. Not for profit hospices can also be crappy hospices, especially when they try to act like for profit corporate hospice.
I've worked at 5 hospices. One was acquired and no longer exists. That transition was traumatic, with month after month of service failures and high staff turnover - broken bodies on the floor that the acquirer shrugged off as just the cost of doing business. I found that organizational culture rancid.
Another was a VNA that had acquired the hospice and home care business of another agency just before I arrived, and acquired an even bigger agency before I left less than a year later - nonstop chaos. That was 8 years ago, every exec but one got fired or beat feet with exec turnover twice, the place is still a mess, and their ownership is once again up in the air...
I got out of the one big for-profit hospice I worked at as fast as I could, and marked it down as a bad job choice. They're still in "growth mode" and privately held, so no chance for any financial disclosures. They just merged with another big privately-held corporate hospice, because now the name of the game is get as big as you can as fact as you can.
Folks need to follow what's going on in "the industry" by learning to access and understand IRS 990's, SEC filings, and basic management accounting.
Based on my personal experience in metropolitan Boston, there's one agency I recommend without hesitation; one I suggest if there were no alternatives; and two that I advise, "run away!"
I've been in nursing since 1973, and my clinical practice has always been in high-mortality settings: critical care in community hospitals and major medical centers; outpatient hemodialysis; and hospice. The work is always challenging - but it's also very doable in the right environment with the support of a good team and an employer that cares about the mission.
That's not always the case.
My heart breaks for colleagues who endure abuse and overcome obstacles from their employers and managers just for wanting to do the right thing - they're being subjected to moral distress and PTSD. It's less evident in this closed community than in other more open forums but nurses are breaking, and being broken.
Now that "gaslighting" is a more widely-understood phenomenon, it's also possible to more accurately describe and understand the actions and motivations of others who insist. "Things really aren't so bad, we're all in this together, this is what you signed up for, just do what you can, it's just tax status, etc."
I've been on "both sides of the bed," as the primary caregiver to my wife Jeanne - also a nurse and educator - through our trajectory from the initial diagnosis of mild cognitive impairment to her peaceful death at home. I had to keep my eyes sharp for crappy care even as an "informed insider," including with folks in hospice.
Our system is a minefield. Patients and families need guidance, someone to join them, and I don't think it's too much to expect hospice clinicians to have the skill, compassion, and opportunities to guide them. It's actually required, so...
I think it's great for patients and families to have an advocate and ally in healthcare throughout the lifespan. So much more is possible if they have an established and trusted relationship with someone, as our colleague in the private club described her own practice in the Zoom meeting she hosted.
I hired a private caregiver 32 hours/week (4 x 8) in Jeanne's last months, was able to keep it together for two years thanks to a caregiver support group, and took advantage of opportunities to consult with others whenever I needed an objective assessment.
But if Jeanne and I had encountered crappy hospice, and if that crappy hospice said, "You need a doula…" or, "We're going to send you a doula…" or, "Maybe you should take doula training…"
No, just no.
Also too I think online doula training for $$$ is problematic. Always ask, "Whose needs are being met?"
Let's pay attention to what really matters - patients and families facing serious illness and end of life.
Thanks for reading. See you next time.
*** "Tax Status" is both accurate and misleading - misleading because the operative concept here isn't taxes it's "PROFIT."
+++
