Helping Too Little, Too Much—Who Wins and Who Loses?

This blog post was made by Beth Witten, MSW, ACSW, LSCSW on January 8th, 2015.
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.[1]

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
  • Self-cannulation

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.



[1] 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.

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Comments

  • Julie Williams

    Feb 11, 8:46 AM

    Right on the money Beth! I believe learned dependence is an epidemic in the U.S. Dialysis industry and something we should all embrace as something only we can change.

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  • Nieltje

    Jan 14, 11:55 AM

    My thoughts exactly, Beth. I am fiercely independent - have been all my life. So when I trained for hhd, I used my mom's cna, but I trained incenter by myself. She participated in the trainings when I went home. I am lucky my nurse agreed to this. Now I do all tx alone, and love it - hassle free, alarm free! I realize that some people require help because of comorbid conditions, but I hate seeing the "patient" being taught to rely solely on the care partner for all tx - it is not healthy, mentally or physically in my opinion. I just wrote about my experience on my blog, journeyofalifeline.com, titled "family as caregivers". I realize family dynamics will always play a large role in assigning caregiver responsibilities, but I believe that, unless the patient is otherwise handicapped, the teaching curriculum should focus on patient centered care, with the care giver brought in at the end of training to assume only as much or as little of the responsibility as he/she chooses, as well as specific emergency procedures.

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  • Henning Sondergaard

    Jan 10, 7:40 PM

    Wonderful words , Beth. Right up my alley.

    I have spent the last week working on a presentation for the Danish Kidney Association's dialysis conference and this exact subject is part of my piece. As a psychologist I have used the concept of 'learned helplessness' to show how patients (I hate that word) are forced into the role of dependency unless they use all their might and fight back against the colossal healthcare system.

    Unfortunately there is a pretty straight forward correlation between learned helplessness, depression, anxiety, hospitalization (which exacerbate the former three) and, finally, death. At the same time there is so little focus is on these factors in clinical settings that they are only rarely even looked at.

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  • a gray

    Jan 9, 2:00 PM

    I have been a care partner for 35yrs this march, patient centered control works quite well for us and has for a very long time. This entire time has been on home hemo nocturnal, no dialysis related hospitalizations.

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    • Beth Witten

      Jan 9, 5:03 PM

      It's inspirational to read about your success. I don't know whether anyone in your area offers classes for patients facing kidney failure or those who are doing in-center HD and hating it, but I bet your story would be inspirational to others as well. Thanks for sharing! Would you consider writing a blog for this site about how you've had such a long and successful home dialysis experience?

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  • John Agar

    Jan 8, 7:09 PM

    Good blog, Beth.
    Right on the money!
    All dialysis personnel should read this.

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    • Beth Witten

      Jan 9, 5:04 PM

      Thank you, John. Coming from you that's quite a compliment. I'll treasure it.

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