Home vs. In-Center Dialysis: Reassessing the Burdens
Dori Schatell


The new Medicare draft Conditions for Coverage propose to require that patients be told about all treatment options — a positive change. But how and what we tell patients influences their perceptions, decisions, and even their prejudices about each modality. Since, for a variety of reasons — both medical and lifestyle-related — many patients will change from one modality to another over time, it is vital that we give accurate and balanced messages about what day-to-day life on dialysis may be like. So, let’s take a fresh look at the burdens of home and in-center dialysis on patients and families and challenge some of our own assumptions.

“Leave the Driving to Us”
There is a belief in dialysis that in-center hemodialysis poses the least burden to patients and their families. But is this really the case? Yes, the treatments are administered by the care team. However, in-center hemodialysis creates arguably the highest burden of any modality in terms of life disruption, emotional upsets, and the need to adhere closely to a variety of difficult lifestyle changes. For example:

• Patients’ family, work, and community roles are disrupted by the need to travel to and from a dialysis clinic — on the clinic’s schedule — three times each week. Transportation alone can become hugely burdensome on family members, even forcing some to give up their jobs. It is very difficult for working-age patients to keep their own jobs if they must dialyze during work hours. Family life is further disrupted by the physical ups-and-downs of intermittent short dialysis treatments (e.g., “dialysis hangover,” cramping, fatigue), and by more frequent access problems and related hospitalizations than typically occur at home with a consistent cannulator on hemodialysis, or with peritoneal dialysis (PD).
• Emotionally, patients on in-center hemodialysis are constantly faced with the need to interact with staff and other patients for hours on end — and interpersonal skills are not everyone’s strongest suit: conflict is both ubiquitous and stressful. Too, patients on in-center dialysis are constantly faced with the loss of their own self-efficacy, and also with the tangible loss of other patients, even to the point of witnessing deaths in the clinic. Finally, the inability to fulfill family, work, and community roles can contribute to depression. Family members, too, must cope with patients’ upsets.
• “Compliance,” “adherence,” or what the Medical Education Institute prefers to call “following the treatment plan” is extremely challenging with in-center hemodialysis, which requires the lowest limits on fluids, the greatest number of medications, and a diet that must somehow balance increased protein intake with reduced amounts of phosphorus, sodium, and potassium. The daily struggle merely to figure out what’s okay to eat and to avoid favorite foods that are now “off-limits” is one that most of us have struggled with at some point just to lose weight. And how successful have we been at that?

Burdens of Home Dialysis

Any form of home dialysis requires a training period ranging from a week or two for PD, 2 to 3 weeks for home hemodialysis using the NxStage machine, to as many as 4 to 6 weeks for other home hemodialysis. Training may interfere with work, and may be inconveniently located, perhaps requiring a hotel stay. Essentially, patients and families must learn what dialysis technicians learn.

Once home, patients and families may need to inventory, order, store, and rotate supplies; set up a machine; conduct and monitor all of treatments, fitting them into family life; troubleshoot machine and treatment problems; report problems or symptoms; keep records; and attend monthly clinic visits. The presence of equipment and supplies in the home serve as a constant reminder of the treatment — there is no forgetting it at the clinic and keeping the home separate.
 
Further, patients on home dialysis and their families must agree to take on the stressful and frightening role of recognizing and dealing with emergencies. Needles come untaped. Machines break down. Cycler patients retain fluid instead of removing it. Heart attacks occur. Being prepared for anything at any time is a role not every patient and family member is willing to assume.

   For resources, tips, patient stories, clinics, and more on all types of Home Dialysis, visit Home Dialysis Central at www.homedialysis.org.