Options for Dealing with Failing Home Patients
In my previous post, I discussed the complex and emotive issue of patients, once home-safe and home-effective, who begin to struggle, whether by advancing age or amassed co-morbidity, and are deemed no longer safe at home. This is a threat, not only for the patient and his/her loved ones at home, but for the home program that supports them and, ultimately, for the acceptance and sustainability of home-based dialysis as a treatment modality.
So…are there modality and/or service changes that might help to resolve this difficult issue or, at the least, may smooth the path back to facility care, if it becomes clear that home care is no longer feasible. I believe the answer is…yes.
Bob Lockridge, a staunch believer and enabler of home dialysis in the United States, gave the Plenary address at the ADC- 2017 in Long Beach, California in March, earlier this year; his topic: “The Transitional Start Unit: An Out of the Box Approach to Expand Home Dialysis”. This was a thoughtful standout presentation to kick off a stellar 3 ½ days—see Page 14 of the ADC Program for a description.
But, note the two key concepts in the title: (1) Start and (2) Expand home dialysis. His talk only addressed home dialysis uptake. But, what if transitional care also addressed the “back end” of home haemodialysis? Might this very same “transitional” unit—or a facsimile of it—provide an answer to the issue I raised in my last post: how a caring home team can decide with a failing home patient and his/her family that enough is enough at home, and that it is time that a switch is made back to facility care?
Too much in haemodialysis is black or white. Care must be facility or home care; self-care or cared-for care; or outpatient or inpatient care. There is too little acceptance of “enabled part-care,’” i.e., encouraged patient participation to a larger or lesser extent in shared-care models. Renal services, especially in the north or England, have been pursuing “shared care,” and are honing this model, which is worth watching and emulating.
So…using the same Lockridge concept of transitional care at dialysis entry, at the start of care, to enable, grow and expand home haemodialysis programs, might the same unit be helpful in reassessing the failing home patient and determining whether they may be sustainable at home? This assessment might help determine if home dialysis is still possible with targeted re-training, or whether home care is truly “over” for that patient, and an agreed model of shared care—utilizing some, but not all, of the patients’ home-trained skills—might allow low-acuity facility care to sustain some level of patient autonomy. We should transition “in,” absolutely…but we should also transition “out.”
Importantly, when I talk of transitioning “out,” I am not referring to or confusing with the issue of respite care. These are not the same. Respite care implies a home-safe patient who, for a myriad of social and/or temporary reasons, needs assisted care from the home management team. Respite implies and means that home care will resume once the reason for respite has passed. The failing home patient is a different issue altogether.
Transitioning “out” should not be the sudden, all or nothing, removal of patient self-care. That must deliver a truly shattering impact to self-confidence and self-esteem. Yet, unbelievably, that is is what we (and I) have done to patients in the past when home care has ended. How callous we (and I) have been! How sad that it has taken to the end of my career for that penny to have dropped. But, it has dropped, and change must follow.
We must be far more flexible. I loved Bob’s transitional care idea when I first heard him talk of it over a pizza in Seattle a year or two ago. He convinced me at the ADC - 2017 Plenary that it was a model we should encourage. But, now we need to drift this idea to the back end of home care too, and, perhaps, in-build the Yorkshire model of shared-care as a means to provide and model a dignified exit strategy for the failing home haemodialysis patient. This maybe the best bet we have to allow patients who can no longer manage safely at home to dialyse with some dignity and self esteem in a safer environment but, using their long-honed skills, contributing to a facility-based, but semi-self-care model.
To allow one of the key advantages of home dialysis: dialysis in one’s own time, a different structure would be needed. But, as I haven’t this structure—or, more importantly, its logistics—straight in my head yet, I have asked Dori Schatell, Executive Director of the non-profit Medical Education Institute which runs this site, to specifically circulate these two blogs to several nephrologists whom I know have shown interest in this area. I will ask her to email each, to seek their input and participation in the discussion section of these two blogs, taken as a pair, to see if we can flesh out some options…especially with constructive patient comments, too…that might help, in a dignified way, deal with this very real, but ignored issue.