Definitely my next tattoo
Items below are from 42 CFR Ch. IV (10–1–11 Edition), PART 418—HOSPICE CARE. (pdf)
“The hospice must designate a registered nurse that is a member of the interdisciplinary group to provide coordination of care and to ensure continuous assessment of each patient’s and family’s needs and implementation of the interdisciplinary plan of care.”
§ 418.56 Condition of participation: Interdisciplinary group, care planning, and coordination of services. (a) (1)
“The hospice must provide nursing care and services by or under the supervision of a registered nurse. Nursing services must ensure that the nursing needs of the patient are met as identified in the patient’s initial assessment, comprehensive assessment, and updated assessments.”
§ 418.64 Condition of participation: Core services. (b) Standard: Nursing services. (1)
Apologies up front - I’m not a lawyer, accountant, or Congressional staffer. I’m self-taught in the ways of reading the Federal Register, and may forget to dot a few i’s or cross a few t’s.
I first wrote about how important it is for hospice clinicians to understand the regulations pertaining to hospice care in this piece at GeriPal - CoPs, obstacle or inspiration.
Bottom line: Any attempt to answer the question, “What’s hospice all about, anyway?” has to start with CoPs.
Nurses are consistently the professional group ranked #1 for trust in Gallup’s annual surveys, though the public may not have the most accurate understanding of what nurses actually do.
The same is true in hospice. While patients and families often point to their “hospice nurse” when asked about their care, that title doesn’t begin to describe our roles and responsibilities. Here’s a quick “Who’s who?” of your hospice nurses.
1. The hospice RN case manager. § 418.56 refers to a role I’ve served in and call, “Registered Nurse Case Manager,” or RNCM. The main function of the RNCM is to, “provide coordination of care and to ensure continuous assessment…”
It’s a full time job, Monday through Friday during normal business hours, because it requires lots of coordination and communication with the rest of the immediate hospice team, as well as with outside resources like pharmacy, equipment providers, referring physicians, and assorted clinical and non-clinical services, all of whom are generally only available at those times.
Being the RNCM is also the single most important responsibility in the hospice construct, the main point of contact for anyone on either side of the bed. It’s a swivel seat position, kind of a cross between air traffic controller and circus juggler - with a little concierge, short order cook, and military post sentry thrown in just for fun. The RNCM doesn’t really go home to home providing care. They go home to home running a series of nursing schools while they also reach out to, hear from, and work with everyone else.
RNCM’s should carry an assigned caseload that makes it reasonable for them to meet these expectation. I wrote more about that here.
Visit length and frequency should be a function of patient/family needs. In my experience, a visit to the home requires anywhere from 45 minutes to 2 hours of attention and activity, depending on what’s happening and not counting documentation and reporting. Some patients and families may only require a visit or two weekly, perhaps supplemented by phone contact, while others may need to be seen daily.
My daily RNCM activity generally included visits to four homes, or maybe five if another visit was short and allowed the time.
My non-hospice experience is in high-mortality settings - hemodialysis and specialty intensive care (high-risk bone marrow transplant and neuroscience) in a major metropolitan medical center, and that mentality guides my work in end of life care.
Hospice is “beyond intensive care,” because effectively managing the clinical trajectory at end of life requires skills and understanding that the critical care setting can’t consistently provide. And that’s not a knock on ICU staff.
Hospice patients are sicker than sick, and when things happen, they often happen quickly and require a prompt response to prevent escalation and disaster. Also, too: we only get one chance to land the plane safely. No pressure.
2. The hospice admission nurse. Patients and families are admitted to hospice just as they’re admitted to any other care setting. It’s a formal process that should include lots of disclosure and agreement, asking/answering questions, initiating services and supplies from pharmacy, equipment providers, and others, along with a useful clinical assessment that can guide the initial plan of care.
In my experience, admitting a patient and family to hospice consistently requires at least 4 hours of attention and activity, including phone calls to initiate, report, or coordinate services, and associated documentation and reporting.
It’s a critical role and process, the first opportunity to set the tone, align expectations, and get everything going effectively. The admitting nurse should also have adequate information and opportunity to review documentation associated with the referral prior to the visit, to prepare for the encounter and understand the context.
3. The off-hours nurse. If the RNCM is a full time Monday-Friday business hour position, who’s available for patients and families evenings, nights, and weekends? That’s the job of the off-hours nurse, also called the triage or on-call nurse. As in hospital and other care settings, fewer staff are available off-hours than in the daytime.
Nurses in this role initially respond to questions and concerns by phone. If a crisis requires a visit to the home, this nurse either makes it or immediately assigns it to a colleague. A smaller off-hours staff, sometimes consisting of a single nurse, means this resource can be stretched to the point of breaking. How can you be at two places at once?
4. The per diem nurse. Most agencies maintain a pool of standby, as-needed staff they can call upon to fill staffing gaps. A per diem nurse usually commits to working a minimum number of hours each month, but also has the ability to control their availability.
In the ideal hospice, one I’d feel comfortable referring friends or family to, these three nursing roles are separate and distinct, the RNCM is full time, and off-hours coverage is staffed to meet the greatest need based on the average daily census and geographic spread.
Watch out for these warning signs
1. Agency requires RNCM’s to admit patients and families. When a full-time RNCM is also required to admit patients and families, something has to give, and that generally means dropping scheduled visits to patients and families already on service, or having them seen by a nurse who is not the RNCM.
Hospice admissions are often urgent, and may not be scheduled in advance. An RNCM facing a day filled with scheduled visits will have that day turned completely upside down by an urgent last-minute call to “drop everything and get to x to admit.”
The most dangerous moments in health care go by the euphemism, “transitions of care” - those times when one clinician hands off a patient to another clinician, a patient is transferred from one locus of care to another, or from one area in a location to another (say, from the recovery room to the general ward), or even from the operating room table to a bed or stretcher.
It’s like a relay race. Everybody can run as fast as they can, but drop that baton and it’s all over but the crying.
Having RNCM’s admit patients is asking for trouble with transitions of care. Do it often enough, and you’re guaranteed to drop the baton.
I’ve worked in agencies where some RNCM’s insisted on admitting patients assigned to them. I think that’s wrong-headed. An RNCM who believes only they are qualified to admit “their” patients and families is an RNCM who’s unable to function on a team.
2. Agency requires RNCM’s to provide off-hours coverage. If my normal work schedule is Monday through Friday, 8-4/9-5, and I have to “carry the beeper,” something’s got to give. That usually means compensating me with a day off elsewhere in the week. If I’m not on duty one weekday 8-4/9-5, who sees my patients?
Continuity of care is an important factor in assuring optimal outcomes. Ideally, my colleagues and I are interchangeable. Our skills are comparable, and our communication/collaboration is strong and consistent, including useful and up to date documentation. We should be able to back each other up, and have confidence in each other.
But the reality is often quite different - documentation may not be complete or current, effective communication and collaboration may not an internalized and active agency value, all RN’s may not be similarly skilled.
The visit may be “covered,” and make the agency believe it’s done its work, but it may also be a lousy visit of little value to the patient. It’s another chance to fall through the cracks.
3. Agencies assign unrealistic caseloads to their RNCM’s. I think the single best feature of Hospice Compare is the checklist, Suggested Questions to Ask When Choosing a Hospice, (PDF), which includes, How many patients are assigned to each hospice nurse? I wrote about that question in an earlier post, Can one number tell us if this hospice is any good?
My usual caseload ranged between 10 and 13. Since I was generally assigned to high-acuity patients being cared for at home, I stayed pretty busy. Ten was do-able, thirteen was a stretch, though thankfully rare.
An RNCM assigned to patients cared for in nursing homes can usually manage a higher caseload, even up to 18-20, because these patients are generally less acute and have the advantage of being in a setting that also provides care.
When a caseload is unrealistically high, patients and families with the most severe crises fill the day, and the RNCM runs around with their hair on fire.
4. Agencies with RNCM’s who are not full time. Unless part-timers participate in clear and effective job-sharing, continuity of care falls by the wayside.
5. Agencies that use contract nurses, or “travelers,” for the RNCM role. I admit, the idea of a 3-month nursing gig in sunny Florida during the worst of winter sounds great. But an agency that consistently depends on large numbers of temps and fill-ins is an agency that’s unable to attract or retain permanent staff.
6. RNCM’s who don’t control their own case scheduling. I once worked at an agency where the RNCM’s started their day by rolling into the office and asking somebody sitting at a desk, “Who am I seeing today?” WTAF?!? Managing a caseload means being able to prioritize competing demands along with being accountable for what happens with each patient and family. Sorry, but a clinical coordinator or other similar title can’t be up on shifting situations, and an RNCM who needs to be told who they’re seeing isn’t actually an RNCM.
7. RNCM’s who pick up lots of “extra hours” on evening, nights, or weekends. Can you say, “boundary issues?” How about, “milking the system?” While there’s certainly sometimes the need to step up in an emergency, not taking adequate time off leads straight to burnout. If you’re anything like me, you want nurses taking care of you who know how to take care of themselves.
I’ve also encountered nurses who believe they’re the only ones who can do the work (they’re not), and others who gorge on overtime while manipulating their day positions. Not good.
8. Agencies with inadequate off-hours staff. Consider this - an agency likely has patients and families spread out over a broad geography, and it could take an hour or more to get from one side of the territory to the other. In the case of a single nurse managing a single crisis, or several nurses each with their hands full, it could take several hours to visit another patient and family facing their own crisis. In the middle of the night.
Most ominous: an agency that won't answer a few simple questions.
"What's your average daily census?"
"How many patients and families on your census are cared for at home?"
"How many full time RN case managers do you currently have on staff to manage ## patients and families living in their homes?"
Why is this the most ominous warning sign? Because an agency that isn't open, forthcoming, and transparent is an agency best avoided. What are they hiding?
Thanks for reading. More later.