When Enough Becomes Enough for Home Dialysis

This blog post was made by Dr. John Agar on August 10th, 2017.
When Enough Becomes Enough for Home Dialysis

For decades, I have advocated for, supported, encouraged, and recommended home dialysis therapies - and in particular, have energised home haemodialysis (HHD) - as the optimum form of dialytic practice. I have been involved in providing HHD for 45 years now, and in driving nocturnal HHD for 20 years. And, I will continue to do so, as it is! But, while I believe, with every fibre, that home care offers the best outcomes, the best rehabilitation, and the best chance for lifestyle to dominate treatment rather than for treatment to override lifestyle, emphasized by the old saying “dialyse to live, don't live to dialyse” - there are dark corners in every human endeavour.

One such dark corner of HHD is what I have come to refer to as the “back end” of home care: how does a caring home team, supportive to the core with their home patients, tell a home patient that enough is enough at home ...it is time for your safety—and the safety of the entire HHD program—that you switch to facility care?

In our service, while we are careful, we are also expansive and inclusive in our HHD patient selection. How else could we have managed to sustain a constant 25 - 33% of our HD patient population on self-care and, almost exclusively, nocturnal HHD for almost two decades? But that extensive experience has also allowed us to identify some of the more difficult areas in home care, and one that is rarely—if ever—discussed, is “the back end.”

Home patients, in the main, quickly grow to treasure the freedoms, the lifestyle, the wellness, the “escape” from the limitations forced by facility care. In particular, these include the inconveniences (and cost) of travel and access, the frustration of rosters, the (sometimes) unfeeling curtness of staff, the production line mentality, the silence, the battles, and the angsts of clinic care. Home patients, by a vast majority, cling to home care! When they compare home care to the facility-based option, it is fully understandable that a fear of clinics, hospitals, and facility line-ups grows. I often hear thoughts expressed like... “I could NEVER go back to facility care”. This is an often-expressed view at the HDC FaceBook group for home patients.

But, years pass. We age. And as we age, frailties that were not there at in the earlier years creep in. Other stuff happens, like ‘”accrued co-morbidities” = medical speak for “the other ailments” that begin to pile up on us all as our years pass. Dexterity imperceptibly alters. Cognitive function declines. Memory develops annoying little gaps or pauses. Words can flit away just out of reach as we seek to find them. Reaction times slow down. These are the realities of aging. Thus, a home dialysis patient, assessed as competent and capable of self-care at inception, may slowly deteriorate in all these ways—and more—as the years pass. Often the only one who does not notice, who can't see it, or who refuses (or suppresses) their recognition of the changes wrought by time, is the patient. This failure to see/accept the influence of aging is subconsciously fed by a fear of a loss of independence.

We all fear that! It is true of us all, and not just the dialysis patient. But for a home dialysis patient, to lose the extra levels of independence that home care brings can be all the more threatening. So...how do we “extract” a failing patient from home? And, how do we explain why we see impending trouble but the patient vehemently argues the contrary; the patient who insists “I am fine” when we fear (or know) she or he is not? Such patients can become more than just a danger to themselves, but they can threaten the program that supports them, and—beyond that—can rock the foundations of the very notion of allowing/supporting a complex medical therapy to be delivered at home by a medically untrained person.

Deaths of home dialysis patients at home and on dialysis are, thankfully, extremely rare…but they do happen. Unlike deaths in dialysis facilities—deaths that are, sadly, all too common—a death at home inevitably attracts coronial examination. That is as it should be, and is not in question. However, patient competency to self-care, or carer competency to be a medico-nursing untrained operator is always a core issue in such examinations. And this can be hard enough to answer, without the added load of known cognitive or physical decline—yet without home withdrawal.

So, beyond careful initial patient selection, beyond good, slow and extended training, beyond meticulous home support by a highly trained, empathetic and 24/7 available home team who know and have trained the patient...all nonnegotiable absolutes for successful home care…must be the consent an bipartisan agreement, to relinquish home care if, in the passing of time, the home team deems a patient to be a threat to themselves or to the program as a whole**.

I still wrestle with the best way to ensure this agreement, this acceptance, and how to find a way by which it can be upheld and implemented. A consent document signed prior to home transfer at the start is one way. But, consent documents, when the pinch comes, can be hard (or impossible) to implement in a system (healthcare) that is not custodial but emphasizes “enabling” and “empowering.” How, then, do we ensure that both (or all) parties—the family included—agree to pull the home pin when the time comes? Experience dictates that agreement by all often fails to co-locate! I am afraid that I don't have a glib and satisfactory answer. Indeed, I am not sure anyone does, from either side of the dialysis membrane, user or giver. And…we, the treating team, can be wrong in our assessment, while the patient is often blinded to his/her changing circumstance.

This blog has not arisen out of any one specific circumstance but from a growing realisation that while we are very gung-ho about expanding and growing home haemodialysis, we must be mindful that all good things must end, sooner or later, and we must manage the ending as with as much rigour as we do the start. More thought, more discussion, and a more empathetic and compassionate light must be shone on this most complex of all aspects of home care in the months and years to come, for the safety of patients, for the survival of programs, and for the health of the home dialysis concept.

Comments

  • Kathy Chesney

    Aug 18, 7:45 AM

    I am an Admission Director at a skilled nursing facility. This is a highly emotional time for the patient and their loved ones as the patient has experienced a significant health event leading to placement in a skilled nursing care. I find that it works best to lay out the reasonable expectations our therapy department will need to see the patient achieve before they can safely return home. I think if you set the expectation at the beginning of home dialysis that this will probably not last the rest of your life, just as long as you are safely able to do it, and share what measures you will be reviewing, and asking the family to also look for, to help everyone see when home dialysis is no longer safe and appropriate care. If they know going in that this won't last forever, and know what to be watching for, you might be surprised the patients who will take responsibility for their care by telling you when they become concerned about their ability for self care. The one thing that surprised me most about my job when I first came, were the number of residents who started off with a goal of going home, and as they worked through therapy saw that they weren't able to reach the goals they set for themselves, and requested to stay long term. Hope this helps, God Bless!

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  • yvonne rowbottom

    Aug 17, 3:36 PM

    I am 72 years and have been on PD FOR 8 months. The operation to fit the catheter was the source for Peritonitis. I then had an adverse reaction to Gentamycin and Vancomycin, leaving me with permanent state of dizziness and staggering walk. The diagnosis was Bilateral Vestibular Hypofunction. The Auditory nerves have been damaged. I have been suspended from the Transplant List because of Peritonitis and BVH. The #Consultant has advised that I would be too much of a risk because of my co-morbities and age. I feel so angry with the renal consultant as none of this is my fault.

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  • Dori

    Aug 16, 12:25 PM

    We are so glad to have you in the group! You are a wonderful contributor already.

    Unfortunately, we can't connect a closed Facebook discussion to this blog, but a future post will share some of the quotes without identifying who said them. :-)

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  • Nancy

    Aug 13, 10:40 AM

    Hi John. I have read this with great interest. I think the change from home to in-center or end of life care is a complex one. One that could be discussed at length. Asking the patient and family for regular input as to what their home experience is like, what changes are they seeing or problems they are experiencing could be valuable. I'm in Alberta, Canada. Questions about vision, sensation, memory changes are asked at each appointment. Helping patients/family remember they are the key person keeping themselves safe. I really believe if the in center experience can be improved by making the patient a part of it rather than being done to them. Keeping the responsibility of how much weight they take off. Looking at low and slow even on three times a week makes the dialysis less traumatic to the body as fluids and electrolytes shift. Offering self assisted in center allows for supervision and assistance with set up providing support and monitoring. It could also provide a support network of other self assisted users that tends to be missing with home users. Early discussions of transitions and staff concerns allows the concerns time to assimilated rather than being a surprise to the patient and family. I'm so grateful to my in center unit (that I've needed in times of illness and injury) and the physicians who try hard to individualize treatment, hence low and slow for me. Thanks you so much for your hard work and generous sharing of your work. I enjoy reading your posts, learning from each one I read. Nancy

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  • John Agar

    Aug 11, 9:50 PM

    I have been truly humbled by the outpouring of sensible, sane, well-thought-through, deep, and intelligent comment passed on this blog at the Home Dialysis Central FaceBook page ... in this instance, unfortunately a 'closed page' that requires membership, else I could direct readers to it to witness the breadth of expression that appears there.

    I have discussed with Dori Schatell the potential to link those comments to this site so that they can form a permanent resource to further this discussion. Time will tell if this can be accomplished.

    Suffice to say, my appreciation for the candour, and for the open approach all at HDC FaceBook have taken to this most difficult issue. It clearly need far more open discussion as the months and years pass.

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    • kelly

      Aug 15, 9:40 AM

      Yes, this wonderful piece is being shared around the community. I hope we can link the brilliant and helpful discussions. The problem is protecting the privacy closed forums provide so that friends, family, and even caregivers do not see our raw emotion.

      Your dedication to our community, meanwhile, is one of my most admired and I really have learned so much from you, Doctor.

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    • Leong Seng Chen

      Aug 14, 4:33 PM

      We in South East Asia if not Asia is quite fresh or new to hi-tech application of advance healthcare matters or business such as the artificial kidney treatment or therapy. Such as using the products of Artificial Kidney machine for conditional factors of over all kidney patients.

      With exceptional of Chinese Traditional Medicine of treatment, it is basically one shoe fit for all normal system as far as machine is concerned. More so, most if not all are solely depending upon the clinics or centres or hospitals arrangement of rule or policy. Unlike Western Countries they are mutually very open in dialogue discussion or even debate among patients nurses & doctors which is good for over all improvement in terms of relationship among patients, nurses, and doctors for deeper knowledge of inter-independence to move on. Why do I say so? Simply because without patients there will be no need for nurses or doctors around at all.

      Quite often clinics or centres do not incline to pay attention or listen carefully those capable & or knowledgeable patients feed back or their personal experiences on their body-mind-game/system. For this I like & want to see more engagement with this area as we are quite behind in many medical field.

      As I believe should there be any major improvement or breakthrough in medical field of recreation or reinvention, it is in Asia today simply we are still lack of basic medical facilities as well as the lifelong learning in term of educational culture & value. Thank you!

      Yesterday I was surprised the nurse who attended me told me she was adding 15 minutes for my normal 4 hours haemodialysis HD session & I was so happy indeed as I had responded to them that I always feel uncomfortable (tend to cramp) for the last half a hour or last 15 minutes of 4 hours HD.

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  • Leong Seng Chen

    Aug 11, 10:11 AM

    I am rather quite fresh & new in CKD haemodialysis (HD) treatment. Therapy at our local clinic or centre in Singapore. I am a Malaysian but living in Singapore as PR with my family. We are basically quite conservative in many ways yet as far as healthcare matters or business. However we are improving nevertheless. I managed to connect Home Dialysis Central Discussion Group at face book pages recently & I find it very useful & knowledgeable for me to learn & pick up something as I go a long my struggling path of dialysis.

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