Helping Too Little, Too Much—Who Wins and Who Loses?
New patients on dialysis don’t know what to expect. They may feel overwhelmed and may expect staff to do everything for them. And staff may expect new dialysis patients to need help with everything. In my experience, people live up or down to our expectations. Having low expectations breeds dependency—while having high expectations breeds success. Therefore, when patients ask for help with a task:
- First consider what education or support the patient needs to learn to do each task with little or no help.
- Determine which patients have unmodifiable limitations that will prevent them from taking on a task independently and assess the help they will need and the strength of their support system to provide it.
The same is true for new patients who are considering home dialysis: can they do most or all aspects of their home dialysis treatment or do they need their care partner to do most or all of the treatment for them? Are home training staff and the care partner encouraging the patient to be as independent as possible—or are our expectations influencing who is expected to do what? Have the patient and care partner kept roles they assumed during an acute illness where the ill person did little and the well person assumed responsibility for full care? If so, is this still appropriate?
There is a downside to helping too much :
When staff or care partners do things for patients that patients could do for themselves, it fosters dependency.
Dependency contributes to a loss of confidence, a sense of worthlessness, and depression.
Depression contributes to poor mental functioning scores and a higher risk of hospitalization and death.
So by helping too much, staff or the care partner could be killing patients with kindness.
We need to encourage patients to be as independent as possible to build their confidence and competency so they can take control of things they can control . It may be a challenge to change long-standing expectations of established in-center and home patients. However, when patients are new, rather than doing everything for them, we can teach them to perform as many of these steps to self-care as possible:
- Washing their access site and care for it
- Recording their weight
- Taking their temperature
- Taking their blood pressure
- Checking to be sure the dialyzer is theirs
- Reporting symptoms and to whom
- Describing what lab results mean and to do to bring them into range
- Describing how the machine works including what different alarms are for
- Setting up the machine
- Taking care of their access site
Learning to do these steps toward self-care can help patients to gain the confidence and competence they need to consider home HD— and for the home dialysis care partner to take a step back. Empowering self-care among home HD patients can help prevent care partner burnout that can lead to relationship difficulties and a return to in-center dialysis . Taking a little extra time to teach a patient these things can foster independence that may carry over to other areas of the patient’s life, which could also counteract the helplessness, hopelessness, and depression that many people with kidney failure often feel.
Even better, when the established in-center patients see the new patients doing more self-care in-center or being able to go home to do dialysis on their schedule, they may want to learn more too. This might be a way to grow your home patient program with more independent patients and happier care partners.
 Lowrie EG, Curtin RB, LePain N, Schatell D. Medical outcomes study short form-36: a consistent and powerful predictor of morbidity and mortality in dialysis patients. Am J Kidney Dis. 2003 Jun;41(6):1286-92.