Kidney Patient Education: A Lost Art, or Just Rarely Seen?
It is more than a little odd that so much time in nephrology practice is spent in the management of the deeper spaces of chronic kidney disease (CKD4, CKD5 and CKD5D)—in the management of vascular access, in the approach or presence of dialysis itself, or in the preparation for sooner or later transplantation. Yet, so little time is devoted in many programs to preparing, educating, and steering patients and their loved ones through the profound upheaval that advanced CKD brings to employability, lifestyle, family, and social structure.
Particularly in the past decade, social media sites have opened the window to more collective patient opinions. Before the advent of the Internet, and before sites like FaceBook gave an interactive voice to previously isolated patient experiences, little or no shared opinion was possible. Patients lived in splendid isolation, unaware that their experience—or their lack of it—might be similar to that of others. Now, the patterns of care (or the lack of them) are far more easily shared. And, if these patterns are reflective of the wider CKD patient experience, then the efforts made by many nephrology professionals to educate their charges do not draw a flattering picture.
Though it is tempting to drift this blog towards the seeming reticence of many of my colleague nephrologists to explore, use, and contribute to the opportunities the digital media opens for education and information, that might be a topic for another day. Meantime, there is seems to be a yawning gap between the patient’s thirst for greater yet less jargon-ridden explanation, and the current delivery, by many programs, of inadequate education in end stage renal care.
This does not mean all programs fail. Some offer excellent one-on-one and group sessions, taking their patients and their families on a careful and gentle journey through a compassionate introduction to dialysis. But, sadly, it seems many do not. As a craft group, nephrologists and the teams they work with, could likely do a whole lot better.
What, then, does a good program offer? How is it structured? How can we better ease a patient and his/her family through the rest-of-life experience that dialysis will, for so many, inevitably become?
This blog clearly encompasses the views of a single nephrologist, and others may think me far from the mark. However, it may prove a more empathetic starting point—according to many of the discussions I have seen at dialysis patient sites—than current practice, practice too frequently perceived as uncaring, laced with jargon, and impersonal.
Let me use the eGFR in a different way. The eGFR is often poorly used in deep CKD—indeed, some still seem to use it as a starting gate for initiating dialysis, although its use in this way is quite wrong. In my view, the eGFR is a useful marker guide for when to “do stuff” relevant to advanced CKD management and organization. Using the eGFR as a step-marker must be interpreted against the rate of renal functional decline, chrono-physiologic age, the intent to dialyse or pursue conservative care (+/- a number of other factors). In our renal service, an eGFR of 25 commonly starts to ring bells!
To us, an eGFR of 25 says it is time to start firming up directions of care: to begin discussions about dialysis, pre-emptive transplantation, or the pursuit of possible conservative care options in the elderly. At this point, all patients and their families are invited to one of our group education days…yes, a full day—with lunch!…held 3 times a year. Here, the gentle introduction of all treatment options is put on the table.
Dialysis, home dialysis—both PD and HD—are presented as the best choices. We believe facility care should be a fallback option only. For transplantation, pre-emptive live donor transplantation is kept front-and-centre, accepting that some may not have a ready donor and need supportive dialysis until a matching deceased donor graft is found. For all, care directives and enduring powers of attorney concepts are introduced.
Short talks are given by one of our nephrologists, by our home training staff (but not facility staff), by a social worker, and a dietician. The real stars of our show are always and only our home patients (again, none from facilities). This is where and when the most engagement, the most interactivity, the most interest, and the greatest positivity come alive. Our home patients get a huge buzz from their contribution, while the dialysis-patients-to-be get the benefit of proper, learned experience. In my view, this is how an eGFR south of 25 can be maximally used.
While patients are offered a return trip, should they wish it, most subsequent education is done, one-on-one, by our full time dialysis and transplant educator. It is intentionally “drip-feed” by nature. Not too much information should be given at one sitting, but rather in bite-sized bits that do not overpower. Several visits, often for 2 or more hours at a time, may be needed to guide a patient and family at their chosen pace through information now more clearly focused on their primary dialysis choice—a choice that, for most, has by now likely been made.
At this point, patients and significant others are shown the machines they may need to maste. They can touch, feel, and size them. And, they can opt to talk with patients who have already mastered their chosen modality. Issues are raised like storage, floor strength, plumbing needs, travel, or work issues that might impact training time. Holiday options: the Big Red Bus and the fitted-out dialysis holiday homes owned and operated by the dialysis patient organisations are discussed.
By an eGFR of 20, it is time to get all the access “ducks in a row”. If HD is planned, vein mapping of both lower and upper arms (both sides) is undertaken, with referral to our fortnightly access clinic for surgical assessment and listing. This should ensure that AV access is in place and maturing by an eGFR of 15-18, leaving time, if required, for superficialisation or other secondary procedures to secure functional access.
By eGFR 12-13, all should be done. By this time, all boxes should have been ticked and the check list complete.
If the choice has been for pre-emptive transplantation, a similar checklist begins with donor selection and discussion between eGFRs of 25 and 20, along with tissue typing and the streaming selection to either direct transplantation, or to entry into the national paired exchange program. Donor and recipient work up occurs between 18 and 15, with surgical and transplant physician assessments to ensure any individual requirements are met.
If used as a time-check to do “x” and/or “y,” the eGFR serves as a ready reckoner along the path to the final chosen preference in renal replacement therapy, again, showcasing home dialysis and pre-emptive transplantation, while back-seating (where possible) facility care. All that said, it is clear and obvious that many patients will not be suited for transplantation, or for a home dialysis therapy. Recognizing this, it IS important that facility dialysis is not de-valued along the way, but is supported as a good option for those who need may it as their primary option or may come to need it at some later time.
Finally, there are those who have become known as the “crash-landers” ...those who either present late from the community, via acute —> chronic renal failure, or who, despite all fair effort to warn and educate, make like Ozzie the Ostrich, and ignore through fear, or neglect, or a mistaken belief that they are “bulletproof.”
An effective program needs balance. It needs structure. It needs a committed staff. It needs empathy, compassion, understanding and patience. It must accept that different patients assimilate information at a different pace. It must acknowledge that different education styles are needed for different folks: some learning visually, some by ear, and some prefering to read. It must present adaptable staff, not require adaptable patients. And, it must know it may still fail some patients, and be prepared for fair criticism.
From social media critique, it seems many programs may still fall short of these marks. Is this just criticism from the disaffected few? I think not. The critical base is too wide to be isolated comment. As such, it behooves us all to listen to, and to better interact with our patients...and to speak to them in plain language. To translate complex medical and/or technical concepts into understandable everyday words requires that the translators (us) actually fully understand the concepts we interpret. It is a skill we often fail to do well.
Patient education and teaching is a vital cog in good care...and the word is out that we could do a whole lot better.