STREAM-HD - A Better Name for Transitional Care Dialysis Units?
While the concept of a “transitional care unit” [1, 2, 3] as a universal elective dialysis entry-point that aims to enhance the uptake of home dialysis is an excellent idea, to me, the phrase “transitional care” lacks empathy.
“Transitional care” seems devoid of the personal ...blind and deaf to the “Look at me, listen to me, I am a human,” needs of new dialysis patients and families. The words “transitional” and/or “transitioning” likely mean little to the average layperson. Rather, it gives the impression of being teleported in a Dr. Who episode!
Furthermore, the words “transition,” “transitional,” and “transitioning” are being applied quite indiscriminately across many clinical and administrative healthcare sectors: they are now used wherever increasing needs (e.g., as in aged care) or decreasing needs (e.g., as in hospital discharges) are encountered. To “transition” is medical admin-speak for moving from one space, place, or treatment to another (higher or lower) space, place, or treatment. We now even are said to “transition” when we die…though exactly to where, or to what, no-one really has a clue!
Wikipedia defines “Transitional Care” as: “...the coordination and continuity of health care during a movement from one healthcare setting to either another or to home, called care transition, between health care practitioners and settings as their condition and care needs change during the course of a chronic or acute illness.” But, each of the underlined words are ‘admin-speak’ terms and are not the words our patients either use, speak, or even understand. And, if doctors are to be understood by and in empathy with their patients, neither should they. Admin-speak uses unfriendly words, which we increasingly insist on applying to intensely individual, scary, uncertain, and threatening periods of change when the use of softer, kinder, more meaningful words might be more calming to patients and their families.
Alas, “transitioning” has now finally poked its nose into dialysis language. Patients who are starting dialysis, or are facing the often equally frightening moment of moving from one complicated dialysis treatment choice to another, are now considered to be ‘’In transition.” I would rather like to think they might be frightened, scared, uncertain...more in need of a smile and a touch, and less needful of a transition.
In dialysis circles, the “transitional care dialysis unit” (TCDU) is being use to describe a relatively new and interesting concept—but one that has also been saddled with the catch-all ‘transition’ word. Though it does serve our purpose, it would be nice to think we might find a friendlier, more understandable way to describe and soothe the change (see later). Meantime, we are stuck with the TCDU!
The TDCU is slowly evolving as a specially staffed and structured area where patients who are starting out their dialysis experience…patients rightfully scared out of their wits, fearful of the unknown of the half-known, guts churning, brows in sweat…can be more gently and thoughtfully educated into dialysis. In addition, it is a place where the benefits of home dialysis can be emphasised before any facility-based experiences can cloud the consciousness.
While there are many directions that any one persons’ dialysis treatment might take, it is increasingly clear that a TCDU—the best place for all new patients, barring emergency starts, to begin their dialysis journeys—should have a strong home haemodialysis bias at its’ core. Past practice—almost to exclusion—has been:
Person with Power: “You need to start dialysis.”
The “start time”—even of itself—is an often-fraught decision.
Patient without Power: “I’m scared.”
The fear too often goes unheard.
Person with Power: “You will need to attend “X” Centre at 8.30 sharp on Monday.”
This time may not actually suit the patient or family.
Patient without Power: “But my car is busted, my son works, and...I’m scared.”
The patient may be wondering how to get there so early, with all the traffic.
Person with Power: “Your dialysis will be for 3 hrs, 3 times/week.”
Everyone starts the same way, and you’ll get used to it.
Patient without Power: I’ve read, somewhere, about “incremental starts.”
Maybe that doesn’t apply to me...but I wonder why not?
Person with Power: “You will have a Monday, Wednesday, and Friday schedule”
Schedules are often arbitrarily applied with scant consideration of patient wishes
Patient without Power: “I do Embroidery Guild meetings on Mondays & Fridays.”
I will miss that so much—I so wish my schedule could be different.
Person with Power: “Any questions ...?”
Patient without Power: “Why bother? You haven’t listened to me anyway…”
This sequence is not as it should be.
Starting dialysis is not about wielding or exerting “directive power”—a common perception among patients—or about dictating terms of treatment and dialysis prescriptions. Starting dialysis should be about flexibility, gentleness, understanding, and mutual respect. The first few starting weeks of dialysis should be all about sorting out which dialysis direction will best suit the expectations and needs of each individual patient, and whether that might be best provided at home, or at a centre—for home is by no means best for all.
While the current default is routinely toward facility-based care...with no questions asked… the new Advancing American Kidney Health Initiative (AAKHI) signed in early August 2019 by the US Chief Executive has set an intended direction towards home.
With the AAKHI directive in mind, the first few weeks of the initiation of dialysis should look more like...
Person with Power: “As we know this is a scary moment for you, we want to make your first few weeks on dialysis easier and more flexible by starting you in a place where you (and we) can each get a better feel for how dialysis might best fit the lifestyle you want to continue. It will help you (and us) decide whether you might do best at home, or whether a dialysis centre may suit you better.”
Patient without Power: “Thank you. I am still scared, but I feel I might now cope better with dialysis than I thought I would.”
So, back to words, for words do matter!
What Anglo-Saxon, one-syllable words might succinctly convey the intent of “the transition,” but replace the admin-words with words that accurately describe the purpose of this new service?
What, then, are the purposes of the TCDU? Surely it intends to:
SHOW patients what dialysis will mean for them and their families
TRAIN patients to do as much of their own treatment as possible
REASSURE patients that they can ‘do’ this – even as we have their backs
EDUCATE patients in the principles of the treatment they are undertaking
ASSESS patient potentials to manage dialysis treatment at home
and…it might take up to a MONTH to sort this out
As the intent of the fledgling concept of the TCDU is to show, train, reassure, educate and assess patients, to do this within the first month of dialysis, and to consider the benefits of undertaking their haemodialysis journey at home, the acronym STREAM-HD emerges.
STREAM is, of course, an acronym, and acronyms are also the life-blood of admin-speak. Healthcare uses acronyms for everything! So, am I just replacing an admin-phrase with an admin-acronym? Well, yes...that is true. But, at least the words that create the acronym are words that mean something.
All of our patients who are electively starting haemodialysis start in the STREAM-HD unit. STREAM-HD is—indeed must be—geographically and psychologically separate from all facility-based community or inpatient services. Our STREAM-HD service started in 2018. It is co-located with our consulting offices, and is physically within our long-standing and well-developed home HD and home PD training unit.
This allows all patients who are electively starting haemodialysis to be introduced to dialysis for the first month of their dialysis journey in a purpose-designed home training area where skilled home training staff can give them personalized attention within a two-to-one patient to nurse ratio. This model allows all patients who are electively starting haemodialysis to see, talk with, and be influenced by
(1) Patients who have selected “home” as their preferred destination and are in training for home care.
(2) Patients who are already on home HD and may be dropping by for a chat or to collect supplies.
Not all patients who electively start haemodialysis will be suited to home care. But, by adopting and (shamelessly) promoting the mantra of “home is best,” maximal home penetrance is maintained. In the Australian state of Victoria, the Department of Health and Human Services stipulates, expects, and monitors a set of monthly KPIs (Key Performance Indicators), one of which is a “35% at home target” (combined home HD and home PD). Our STREAM-HD unit helps us to ensure that we continue to meet this target, month on month.
I suggest that STREAM-HD—while an acronym—may be a more meaningful, accurate term than TCDU. It spells out what it intends: the streaming of patients into their best-suited dialysis pathway—while the letters that make up the acronym all stand for the intent of the program: show, train, reassure, educate, and assess, all within the defined time-frame of a month.
Lau K, Gray B, Lo I. Transition Care Unit: A model to support growth of home dialysis. (Abstract) ACKD. 2016; 23(2):128.
Morfin JA, Yang A, Wang E, Schiller B. Transitional dialysis care units: A new approach to increase home dialysis modality uptake and patient outcomes. Seminars in Dialysis. 2018; (1):82-87
Bowman BT. Transitional care unites: Greater than the sum of their parts. CJASN. 2019; 14(5): 765-767.