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.
Comments
Gale Schulke
Sep 15, 2017 4:35 PM
Dawn P, Edwards
Aug 18, 2017 6:02 PM
We are all aware of how great it is to finally get out of the unit and have the freedom and independence of dialysis at home. But what do we think when things become difficult and respite care is needed? For many of us at corporate owned facilities, respite care is a loss of money for our nurses who should be training new patients and gaining 'points'. For them, respite care can be a huge inconvenience.
Instead of treating a patient with loving kindness when they are having a hard time at home, our capitalist society has our nurses so busy training to gain points that they don't have time to give respite care. Which leaves patients stuck right back into the unit that they ran away from. I ask you where is the 'rest' in respite?
Personally, going back in center after being independent for so long is a completely traumatic experience. Having to watch to see who is washing their hands or not. Looking for patients to get sick on the machine or praying that no one codes on my shift.
What is needed is thoughtful and 'caring' care teams to evaluate if a patient really needs to cease home treatment. After carefully exhausting every opportunity to keep a patient in their modality of choice. Returning a patient back to the unit could be traumatizing at the least, and at its most, could lead a patient to making a decision to withdraw from dialysis altogether.
Just like training is required to begin home treatment, the same care and concern must be used to end home treatment, with careful attention to what the patient wants and the emotional state of the patient at the time. Staff should consider if all options have been exhausted to keep the patient in the modality of CHOICE. What is the current quality of this person's life in their eyes, and will making a change adversely affect this person's life? Maybe psychological and family counseling may be needed, or maybe some thinking outside of the box may be required. I just ask that great thought, care and concern for all aspects of a patient's life be considered before making a choice to take away the independence of home therapy and whom truly is being served?
Barbara Bettencourt
Nov 06, 2019 7:53 PM
John Agar
Aug 17, 2017 10:34 PM
"... when mom first started doing home dialysis, so much emphasis was placed on how great it was because we were "taking back our freedom", "putting our care in our hands", "being in control of our health" etc. Which is all very true, but when there came a time that mom could no longer do home dialysis, it felt, consciously or perhaps subconsciously like we'd failed, like we were giving up control or our part in her care and health. What was at one time a huge motivator and positive, became something that when we had to switch from it was now a source of shame and failure."
That comment came like a timely bucket of cold water and I thanked her for alerting me to my careless terminology, by replying:
... "when I used the term 'failing patient', perhaps I didn't think it through enough to the impact that that term may have on the patient or his/her family. You are spot on to raise my error. While a 'falling patient' is a term in commonly usage, your post makes me want to re-phrase it - find another descriptor - that avoids sending mixed messages to the 'failing' individual, that somehow, he or she, or his/her loved ones/carer(s) are somehow the lesser - through failure.
'Failing' in the sense I have used it is, commonly, a complex of small things, 'failure' by 1000 cuts, if you like ... worsening sight, memory lapses, a trembling hand, increasing deafness ... the list is long. Each may be small but the total can be significant.
We DO need to manage the messages we send around this issue far better than we do. And this carer post highlighted a key negative psychological 'hit' that we may be landing on a patient or family if we don't simultaneously sustain pride in their achievemen, while persuading safety over risk.
Henning Sondergaard
Aug 17, 2017 8:55 PM
I am just surprised it isn't implemented in more places already. The reason for this is that my clinic is exactly that sort of clinic in Denmark and it's been up and running since the late 80's. And I know of another clinic in Sweden that works in the same way.
So basically we have three types of care. Limited care, Selfcare, and home care. That means people come in and train to see where they belong. The majority train to go home. Some have a situation where they can’t go home (shared/small living quarters – or no home at all) they transition to the self-care part, and finally there are the folks who need help with some of their treatment who will be in the limited-care unit. Some of us transition from one to the other on a regular basis. As a home patient (or in-center self-care patient) it is nice to be able come to your own center if you suddenly end up with an acute cath until your regular access is online again – I guess this falls under respite care.
And then we have those who have done home but can’t do it anymore. They can stay in the unit as long as they are able to help out even the slightest. And not until they NEED full service are they transitioned to an in-center facility.
I am presenting my clinic at the IU Home Dialysis Symposium in Indianapolis September 14th, where I will talk about patient centered care in theory and practice. The practice part of the presentation will be a presentation of my clinic and some of the patients who are not able to be in a home based care facility while they do not really belong in-center either.