Home Hemodialysis Needs You!
Authors and Affiliations:
John W M Agar, MBBS, FRACP, FRCP1
Dori R Schatell, MS2
Rachael Walker, BN, RN, MN3
1Renal Unit, University Hospital, Barwon Health, Geelong, Victoria, Australia; 2Medical Education Institute, Inc., Madison, WI, USA; 3 Renal Department, Hawke’s Bay District Health Board, Hastings, New Zealand
Three words, “Yes, we can,” were used with great effect by Barack Obama in his 2008 campaign for the American presidency. These words came to epitomize the hopes of a new generation yearning for a better way. While some may question whether those political goals have been achieved, what cannot be argued is the optimism and enthusiasm that this short phrase embodied.
The same three words “Yes, we can” also aptly apply to the provision of hemodialysis (HD) in the home; however, in this case, “yes we can” has truly become “yes, we are.” For those unfamiliar with home HD or those who are unsure how to begin, this website will show you that “you can, too.”
Home Hemodialysis Uptake
Despite demonstrated benefits to patients, many dialysis professionals still seem reluctant to tread a home dialysis path. In the United States, the growth of home modalities has been hindered by a system that until recently has not promoted home options to patients.1
Despite the early success and implementation of home HD, use of this modality in that country declined rapidly in the years that followed the passage of the Social Security Act of 1972, legislation that favored facility HD rather than home-based care.2 Meanwhile, in other countries, such as Australia and New Zealand, legislation and funding structures developed in a way to favor home-based care instead.
The days of home HD underutilization may be coming to an end in the United States, as evidenced by the growing concerted effort of clinicians to encourage home modalities and, in particular, by working HD patients who want to maintain their employment status.
Unfortunately, the 30-year hiatus in expertise and familiarity with home modalities created by the predominance of the for-profit model has left a deep chasm in physician knowledge about and acceptance of home HD.
While governments are now realizing the dual outcome advantages of home dialysis—better clinical outcomes at lower cost to the overall health system—physician inertia now seems to be the most important remaining challenge to overcome.1,3
Such inertia is largely bred from unfamiliarity, as many physicians receive training that does not require experience with home HD. The unfortunate result is a lack of knowledge among physicians on how to establish home HD programs and how to adequately manage home HD training and care.
In Australia and New Zealand, all nephrology trainees have long been required to fully train in both home peritoneal dialysis and home HD.4Perhaps as a result, home modalities comprise more than one-third of all dialysis patients in these 2 countries, while home HD sustains 11% (Australia) and 18% (New Zealand) of all dialysis patients.5
Conversely, in the United States, many trainees have not been exposed to any home dialysis training. In a national survey of US nephrologists, 38% reported that they did not even feel well enough prepared to care for in-center HD patients despite success in their certification examinations, let alone care for home HD patients. Of note, however, only 6% said they would choose standard in-center HD for themselves if their kidneys failed, assuming they had to wait 5 years for a transplant.6
It stands to reason that if we do not train, and trainees are not exposed to home-based treatment, then it is unlikely that many clinicians will later prescribe these modalities or establish a home dialysis program. This fact, coupled with the inevitable distortions created by complex reimbursement and financial disincentives, may contribute to the extremely low uptake of home HD in the United States, which at most recent estimate was just 1.3%.7
Fortunately, the American Society of Nephrology recently moved to mandate a home dialysis curriculum for all trainees, with similar requirements proposed for dialysis nurses. Times are truly changing.
Educating Patients On Modality Options
What is certain is that we, the professionals who lead and inform, must accept responsibility for informing our patients of home dialysis alternatives, rather than hiding behind the easy option of center-only treatment. Growing home HD first needs YOU—the clinician—to engage with home care, and to then engage your patients.
Your patients won’t “go home” unless you lead them there, and it is not primarily their fear, but their lack of awareness, that holds them back from choosing home HD.
Although the authors acknowledge that not all patients are clinically appropriate for home dialysis, dialysis providers in Australia and New Zealand have achieved a prevalence of home HD that is several-fold higher than that of the United States and many other countries.
Indeed, some clinicians in Australia and New Zealand manage more than 50% of their dialysis population on HD and peritoneal dialysis at home. Others consistently sustain >25% to 30% of all HD as home treatment.8
In Australia and New Zealand, dialysis decisions are commonly led, influenced, and encouraged by home–savvy clinicians who understand the benefits for patient outcomes and provider cost containment—both are part of the home equation. Further, binational survival data underpin and encourage this approach.9
It is not unethical to “lead” patients to choose a dialysis modality. It is essential that nephrology professionals provide expert guidance. If clinically and socially suited and provided the opportunity, many patients prefer self-care at home—as did more than 90% of both Scottish10 and American6nephrologists when asked where they would prefer to dialyze. Yet, most physicians currently send the great majority of their patients to facility care that they would not accept for themselves.
While we must be careful not to send patients home who are unsuitable, this website will help you determine between those who can and cannot manage at home. Consider this: at your next regular predialysis group or one-on-one education session—you do run one, don’t you?—ask your patients one simple question, “Do you drive?” Driving requires a number of key cognitive attributes: conceptualization; problem-solving; multitasking; decisions at speed; rapid responses; adequate vision and manual dexterity; and, above all, confidence, self-belief, and bravery.
These same attributes indicate that a patient is also a potential candidate for home dialysis, until proven otherwise. In addition, “driving” a home dialysis system is arguably both easier and safer than driving a car.
Creating and Expanding Home HD Programs
Many good, reliable websites have described successful programs. Among these are a basic but informative Australian website (http://www.nocturnaldialysis.org) that provides useful patient-oriented material,11 and the US-based Home Dialysis Central (www.homedialysis.org), a not-for-profit website brimming with useful information for both patients and professionals.12
But among the best home advocates of all are the home HD patients themselves. They are uniquely passionate about their home care—harness their passion. Think about it: Can you name a single facility patient of yours who shows a passion for in-center care? Resignation, perhaps, but rarely passion.
The website describes, in detail, the prerequisites for successful home HD, and we hope you will read it in its entirety. Meanwhile, the following simplistic guide for patient recruitment encapsulates 6 key essentials that combine to deliver a successful program:
- Find, educate, or become a “champion”.
- Consider forming a partnership with an experienced home HD program to assist with planning, funding, building, and staffing issues and to provide advice if or where problems might arise.
- Invite a ready-made expert—a home dialysis professional, or better still, an experienced home HD patient—to speak at your program’s education days.
- Identify your potential home HD patients using the module in this website titled “Patient Selection and Training for Home Hemodialysis”, or use the MATCH-D tool,13 or the Renal Association’s NICE Guidelines on selection of patients for home dialysis.14
- Educate patients about the data supporting home HD: reduced dietary and fluid restrictions; reengagement with society, friends, and the community; return to work; and associated improved survival.
- Provide copies of Help, I need Dialysis!,15 and encourage the use of the My Life, My Dialysis Choice,16 or the My Kidneys, My Choice17decision aids that are designed to help each patient match his or her desired lifestyle to a dialysis option
For any who still doubt the effectiveness of home HD; for any who may be uncertain about how to choose suitable patients, or to know who might benefit; for any who fear potential clinical, ethical, or legal traps and pitfalls; for any who are unfamiliar with the infrastructure, water, and machine requirements for successful support in the home; for those uncertain about funding or costs; for any concerned about misadventure or mishaps at home and, if or when they do uncommonly occur, how these should be handled—this website addresses these questions and details how others have overcome the challenges that home HD can present.
As the future affordability of all dialysis and an improved trajectory toward more optimal dialysis is now increasingly linked to home-based care, this website will show you where to start. We challenge you to start to believe that “Yes, you can,” too.
- Mehrotra R, Marsh D, Vonesh E, Peters V, Nissenson A. Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis. Kidney Int. 2005;68:378-390.
- Rettig RA. Origins of the Medicare Kidney Disease Entitlement: The Social Security Amendments of 1972. In: Hanna KE, ed. Biomedical Politics. Washington, DC: Division of Health Sciences Policy: Committee to Study Biomedical Decision Making, Institute of Medicine. 1991;176-214. Available from: http://www.nap.edu (accessed date: January 27, 2016).
- Agar JWM. Home hemodialysis: A glass half-full. Nephrol News Issues. 2013;27:22.
- Royal Australasian College of Physicians. Advanced Training in Nephrology. Available from: http://www.racp.edu.au/… (accessed date: January 27, 2016).
- Polkinghorne K, Briggs N, Khanal N, Hurst K, Clayton P. The Australia and New Zealand Dialysis and Transplant Registry. Chapter 5: Haemodialysis (including home haemodialysis). 36th Annual Report. Adelaide: Australia, 2013. Available from: http://www.anzdata.org.au/… (accessed date: January 27, 2016).
- Merighi JR, Schatell DR, Bragg-Gresham JL, Witten B, Mehrotra R. Insights into nephrologists, clinical practice, and dialysis choice. Hemodial Int. 2012; 16:242-251.
- USRDS Annual Data Report. International Comparisons. Am J Kidney Dis. 2014;63(Suppl 1):e333-e334.
- Fortnum D, Ludlow M, Morton RL. Renal unit characteristics and patient education practices that predict a high prevalence of home-based dialysis in Australia. Nephrology (Carlton). 2014; 19:587-593.
- Marshall MR, Hawley CM, Kerr PG, et al. The effect of home haemodialysis on mortality risk in Australian and New Zealand populations. Am J Kidney Dis. 2011;58:782-793.
- McManus SK, Mactier RA. Scottish nephrologists’ dialysis preferences: exposing the gap between what we offer and what we would choose [abstract]. The Scottish Renal Association, 2009 Autumn. Abstract 1.
- Agar JWM. Nocturnal Home Haemodialysis. 2012. Available from:
http://www.nocturnaldialysis.org (accessed date: January 27, 2016).
- Medical Education Institute, Inc. Home Dialysis Central. 2014. Available from: http://www.homedialysiscentral.org (accessed date: January 27, 2016).
- Schatell DR, Witten B, et al. Method to assess treatment choices for home dialysis (MATCH-D). Madison, WI: Medical Education Institute, Inc. 2013. Available from: http://homedialysis.org/match-d (accessed date: January 27, 2016).
- Mactier R, Hoenich N, Breen C. The Renal Association Home Haemodialysis Guidelines (9.1-9.3). 2009. Available from: http://www.renal.org (accessed date: January 27, 2016).
- Schatell DR, Agar JWM. Help, I Need Dialysis. 2012. Available from: http://lifeoptions.org/help_book (accessed date: January 27, 2016).
- Schatell DR, Witten B, Agar JWM. My Life, My Dialysis Choice. 2014. Available from: http://mydialysischoice.org(accessed date: January 27, 2016).
- Fortnum D (for Kidney Health Australia). My Kidneys, My Choice. 2013. Available from: http://homedialysis.org.au/… (accessed date: January 27, 2016).