Choosing a Quality Hospice

You matter because of who you are. You matter to the last moment of your life, and we will do all we can not only to die peacefully, but also to live until you die.

Dame Cicely Saunders, founder of the modern hospice movement

Don’t count on treating your chronic disease indefinitely, or that it won’t kill you. The medical definition of “chronic” includes the pessimist standby: “it only gets worse”.

Here’s how to prepare for being told some variation of, “There nothing left that we can offer you…except hospice.” That the candy store is empty. How “We tried everything”. Let’s focus now on “keeping you comfortable”. There’s going to be another experimental drug/procedure/mantra-spell-crystal-prayer-cryo preserving method coming online soon, if you want to enroll, one that your insurance should cover.

Consider, first, how most people elect to enroll into hospice: They don’t choose one, they accept one chosen for them. More often than not, among the sometimes hundreds of specific hospice businesses that operate within the area, medical professionals promote only one of them, which is brought forward as the patient’s sole option.

This is how that happens. You’re sick, get tested and find a disease that’s inoperable, incurable, and soon to be terminal. The shattering news is dumped onto your lap, suddenly, like a frat boy’s puke. Next coherent, self-generated thoughts are nowhere to be found. Torpid, tropical sweat drenching you soon after being fresh off the airline from a chilly drizzling London fog at least allows you eight hour’s expectation time to contemplate the waiting climactic uncertainty. But this anvil dropped from the sky offers no time for alternate ideas. And how could you possibly think? One needs big chunks of time in order to think. When you’re in shock and need to explore this new feeling akin to being in free fall, thoughts come slowly.

Clinicians can’t bill for the time it takes to get your emotional and mental act together. But since Dr. Feelgood pushed you out of the flying plane and into your shock, she’s prepared to throw you a parachute.

If you were a Wayne Dwyer or some other self-helper guru of meditation, you might vegan-butter your daily bread with these opportunities for a spiritual wake up. For the rest of us, let’s assume that we actually hate feeling out of control. Weak and disoriented, the lightest feather moves us. We’re being dumped by our medical lovers (after all we’ve been through!), ripe for the Rebound. We’re suggestible, hungry for comfort, we’ll latch onto the next offer. That’s when the hospice card is played.

If you’re given the Bad News within a medical facility, chances are it uses (in brochure speak: “utilizes” or even cozier, “partners with”) a preferred hospice. Not just any bunch of Kavorkian slobs. You trust your doctors so far, perhaps love your nurses, or one of them, and so leap over the fallacious logic that “reasons” (read: feels-figures): “How can these fine clinicians even come close to associate with a clown car batch of screw ups? What the hey, let’s give them a tryout.” And so you invite strange people into your home and trust them to do — you know not what else.

So, you’ll say, “Okay, maybe, but not just yet”. You might even say, “Let me think a minute!”, playing for time. Dr. Benway may be a prescribing quack but he’s no vacation timeshare Closer, pressuring you to sign. Your doctor won’t abandon you right then on the spot. Not if you have insurance, anyway.

Like W. C. Fields kept his medicinal drop of liquor handy (in case he saw a snake), you can pull out this list of dandy questions. Open your notebook (as Fields also kept his snake handy) and document until you get all the answers to these questions. Leave a whole page empty under each question to make sure you don’t skip any, and to compare different hospices. Or to doodle, and make it seem you’re not letting any representative off the hook for their promises. Oh, yes — hospices will make assertions, say things like “Oh, Yes, we do offer Tibetan monks to chant the Bardo Thodol while you’re taking your last breaths!” Quote them later from your notes.

Are they Medicare certified? If not, they’re not for you. Hospice is a Federal healthcare benefit. If you’re over sixty-five, it’s Medicare. If not and you’re poor enough, unable to self-pay your way through the possible months of intensive contact hours @$200 and up a visit, then it’s Medicaid which covers expenses…once you’ve been enrolled, that is. That could take a little time. “[H]ospices must meet specific Federal requirements and be separately certified and approved for Medicare participation.”  https://www.cms.gov/medicare/health-safety-standards/certification-compliance/hospice.

How many staff are certified in Hospice and Palliative Care? The more nurses and CNAs who study and successfully sit for their certification, the better motivated and the closer they hold to a professional standard of excellence. That’s the reasoning, that certified nurses enjoy what they do and they’re good at it. The HPCRN certification test felt much more difficult than my NCLEX. Renewal testing is mandatory every two years.

Of course, you can still have an RN sporting an HPC (Hospice and Palliative Certified) on his business card and talk to you like a robot or treat you like he thinks you’re an idiot, either of which mark him as bad company. Ask your hospice visitors, “Do you know any good hospice jokes?”, a second-best method for separating the stiff chaf from the nourishing wheat. Don’t underestimate laughter to lighten your spirits in every healing encounter.

A golfing enthusiastic doctor told me this hospice joke.

A man in hospice begs his wife to reconsider his request that she eventually allow herself to date again if she meets the right person. She finally gives in, but the effort zaps his energy.

He calms down after a coughing fit, then weakly asks, “Will he sleep in our bed?” “Oh, honey! we just bought that bed, I don’t know…” breaking off and tearing up.

Sorry he caused her grief, the man says, “Well, that’s alright, he can have my golf clubs.”

“Oh, never!” the wife says. “He’s left handed.”

What oversight agency surveys them; the last time what deficiencies needed resolving? Centers for Medicare & Medicaid Services (CMS) oversees compliance of Clinical Standards and Quality, specifically: Is this person Eligible? How does the hospice documentation support this judgment?

When surveyed by a State representative of the CMS, hospice businesses will expect this includes selective chart reviews. Office nurse managers keep tabs, during annual inspection window periods, of some tidier and better-represented charts that can be “spontaneously” brought out for detailed review. The auditors know these charts were cherrypicked. No one’s fooling anyone any more.

Next come the dedicated hospice facility visits where they’re also reviewed and inspected for proper bedside care and environmental order. Is everything in the stock room no closer than X inches from the ceiling? Regional clinical operations managers either sweat or geek out over minutiae like that.

Then, the follow-along home visits assess nursing precision of the latest hygiene standards and general safety protocol, procedural accuracy and skill, as well as personality deportment. I live in dread of being called on to host a reviewer during a home visit. What if I forget to sanitize my hands after changing a pair of gloves during long and complex wound care? What if my sanitizing cloths in this ziplock baggie isn’t labeled with the latest expiration date from the cannister back in the trunk? Will I remember to count all 213 pills in the thirteen bottles when eyeballing or merely shaking the pill bottles is “doing pretty good” — for me?

We assume the reviewers are going to find some deficiencies, somewhere. It’s not a business breaker, the Empire won’t fall. We write up a “plan of correction” to address these deficiencies, show evidence of correcting them within a few week’s time, then submit the report. End of subject. Until next year.

Was it that the care plans needed timelier updates? An in-service and follow-up reviews at weekly meetings can fix that. Was it that the nurse cursed out a demented patient, or lied to the family about actually being at the nursing home when “assessing” their mother there, not just calling the nurse working on that floor? Unethical and fraudulent work can’t be explained away — that’s your red flag against signing with that outfit.

Is it a National Hospice and Palliative Care Organization (NHPCO) member? How recently have you completed its Standards Self Assessment? This gets bonus points, but isn’t necessary. Every time I joined a new professional nursing organization or sought more letters after my name, the first blush of virtuous feeling seemed like the length and extent of its payoff. I just scrolled through the NHPCO 2023 newsletter and wasn’t terribly enlightened. Perhaps I’m not much of a joiner. I keep imagining embarrassing conga line dancing and the wearing of silly hats at the meetings.

Talk about your family evaluation surveys about your services. What are your recent scores? This one is important. Families respond to questionnaires, sent about six weeks after their person in hospice dies, about what they remember of the quality of care for themselves and their deceased family member. Were we there enough visits, especially at the end; did we fix the symptoms (i.e., the pain, anxiety, nausea); were we available to answer and did we help them feel secure and well cared for? If the hospice you’re being fitted to is glad to show their responses — which should be publicly available but are privately difficult to access — and tell you what they fixed to respond to anything critical, then trust them a little further.

Private residences, hospital units, nursing homes to use if care becomes too complicated or overwhelming at home? Become comfortable yourself first to this question, or less anxious about its meaning. With courageous understanding know that death is usually messy, and taking care of yourself or others can be exhausting without relief. Who has our backs? Where can we turn within your organization to place the identified patient for a limited time to fix what’s unmanageable at home? Where’s help when the caregiver needs relief, even if they’re the terminal one themselves?

Private residential hospice is prevalent in England where Dame Saunders’ influence matched the socialized medicine concept more successfully than here in Chicago. I think people imagine that the English model of a paid-for, place-to-go-die is what hospice is all about in the USA. No, it isn’t. We have nursing homes, and they’re generally bad news. Tread carefully in your vetting one. Another blog post is needed to explain why (I wrote several you might check out).

My employer still holds a few dozen beds in hospitals at various parts of town for cases of caregiver relief (“Respite”) or uncontrollable symptoms, including a bit-too-much to handle wounds. Respite is for a limited number of overnights (ask/note how many); symptom management is for however long it takes, typically discharging after 48 hours when less than three as-needed medications/24 hours are given with overall conditions appearing settled.

Respite means letting the caregiver attend to any other matters, no judgements made. You made a date to attend a family reunion? Go, live your life, even if it’s actually an S&M convention you’re booked for.

Are volunteers used? What will they do and how quickly are they available? Volunteers are the lifeblood and soul of hospice philosophy, I think. It’s something Dame Cicely emphasized; one of her books is on hospice volunteerism. A lot of memoirs I will stay away from delve into their author’s discovering the meaning of life through hanging around hospice patients and witnessing them die. A rich guy I nursed from the North Shore who made his fortune but retired early because of heart failure, he kept repeating “It’s the best kept secret!” Medieval pilgrims in need of a faith healing found help from the unpaid along the trails, who cared for many unto death, and even buried some. It seems to me that my hospice just waits for volunteers to inquire, and hopes enough of our total patient contact hours come from volunteers. It’s a requirement. I forget the percentage, maybe 3%, or 5%. In eight years I think my patient’s volunteer contact is less than 0.0001%, and not for my lack of asking. Not a lot of volunteer interest comes up about impoverished neighborhoods. Pilgrims trudging there tend to look after their own.  

By the way, volunteers at private residences doen’t mean that the sole caregiver can pop out for some darts at the local pub. Ask a neighbor for that favor.

Night and weekend crisis availability — how 24/7 capable are you if a crisis arose on home site? How important is having nurses show up when there’s bad trouble? Right, this one can’t go un-asked. When are the worst melt downs? Two to four AM. Call our 800# after hours and an RN picks up. Maybe things can get worked out over the phone. I’ve yet to convince my Spanish speakers to call our help line. Depending on the number of crisis calls, and whether call-offs in our hospital units force one or more on-call nurses to be pulled indoors and unavailable to your sudden need, an overnight nurse might show up anywhere from 30 minutes to 3 hours after you call us. Maybe not even arrive until the daytime crew gets bustling. Fortunately, on-call matters go fairly well.

Which hospitals and nursing homes do you work with? The more, the merrier. The wider the geographic range, the more varied the selection of facilities, the more likely you’ll be taken care of. Range and depth of cooperation agreements with heath care facilities should inspire confidence that your auditioning hospice can follow you through the gamut of any intervention, at whatever level of care the change occurs. See you at the hospital/the nursing home/at Wrigley Field while you’re playing hookey! (“Beuller…Beuller?”)

How long have you worked in the community? Length of service and long-term relationships signify a positive reputation, honesty, decency (George Orwell ranked this principle very high), stability, positive moral qualities, and fair dealing with employees.

Don’t lose sight of the fact that no one is forcing you to accept any hospice help, from anywhere, by anyone. Hospice controls several resources by arranging for equipment, supplies, home hygiene and skilled nursing care, social workers, chaplains and music therapists. On a clear day you can even see physical therapists, podiatrists, and activity specialists who help suggest ideas for legacy remembrances like “memory bears”, Teddy bears sewn together with uncle’s favorite plaid shirt.

Or you can shut the door, head for the Johnny Walker Red Label, light up another smoke, and watch your VHS recorded “Ba-Ba Black Sheep”, or reruns of “The Jeffersons”, “WCRP In Cincinnati”, “Masterpiece Theater” while you think a while. See what happens. You can always recind a DNR; you can always revoke hospice. Maybe you’ll feel different tomorrow and call a few places. Or you can book passage to Antarctica to contemplate (and contribute to) global warming, or go sweat yourself at the Equator.