Humanizing Dialysis: Trying to Make Something Good Out of a Really Bad Diagnosis

This blog post was made by Gale Schulke, RN, CDN on March 31st, 2016.
Humanizing Dialysis: Trying to Make Something Good Out of a Really Bad Diagnosis

As a nurse for home dialysis programs, I find that we are in a perfect position to humanize dialysis. Being a training nurse is more than just administering dialysis. We need to learn as much as we can about our patient clients. When they ask to do dialysis in the home, they are asking to be empowered. They are asking us to teach them as much as we can so they can take care of themselves. They ask us for independence and to be a CARE PARTNER with them on this journey. So what does that mean, exactly?

The first thing that comes to mind is education. Since our clients are not “cookie cutter” people, each training session must be tailored to the individual. Adult learning varies from person to person. Some people learn best by getting their hands on whatever they are learning. Some want to be talked to, some need to read. Some need to take notes. Some use a combination of things. It is important that the nurse be aware of how their patient clients learn; if you don’t do that first, you are wasting valuable time. Most patients know how they learn best. Ask them:

  1. Do you learn best by getting your hands on?
  2. Do you prefer to read the procedure first, or have me explain it?
  3. Do you need to take notes?
  4. Should I demonstrate first?

ALWAYS, ALWAYS, ALWAYS include WHY something is done in a particular way. When you tell a client WHY, they remember HOW. Along with teaching patients HOW to do dialysis, we need to teach them about kidneys. They need to know WHY they are being asked to take binders, for example. How do they work? Where do they work? Why is it so important to keep phosphorous in check? Will taking a particular binder be different from another type that may be less expensive?

Next on my list for humanizing dialysis is to LISTEN! Do not be a dictator. It is not “your way or the highway”. Your patient clients know their bodies better than anyone else. When something is amiss, they know long before you do. If you are in the habit of listening to what they say, they are more apt to tell you when something does not feel right, and you need to build that relationship from day 1. If you don’t, you will never have another chance to convince them that you care and that you are paying attention. In reality, patient clients are going to do whatever they makes up their minds to do. But, they are more apt to follow your direction and advice if you have established a Healthcare Advisor—not Healthcare Dictator—relationship from the start. Ultimately each choice is their decision, not yours. So, work with what you have.

Most people will try their best to do what is right and the best for themselves. Many have great intentions, but, as we all do, forget or just don’t realize the importance of something we teach. How many of us have missed taking our own medications or started an exercise program, only to find that it took up too much time? Our patient clients are no different. They are human, just like us. You cannot expect perfection when we, ourselves, are not perfect. It is so easy to demand that people do exactly what we tell them to, but reality is very different. We need to understand that our patients do not deliberately jeopardize their health. What they need is for you, the nurse, to partner with them and come up with ideas for how they can better manage their care. Again, for everything you ask them to do, you must give a reason WHY.

Labs: Share them with the patient. Most people in their 40’s on up do not appreciate the kindergarten version of the labs. They really DO want to know what they are and how important each test is. Telling patients that albumin is “low” does not give them the WHY of how important a higher level is. Give them the facts. Give them solutions that will work for them. Don’t tell someone who cannot stand the sight or taste of eggs to eat eggs. When it comes to labs, it is truly an interdisciplinary team approach that includes the patient client. For example, you may need to involve the social worker to assist in finding low cost alternatives for food and medications. All people are not created the same. So many things come into play when dealing with people. Respecting their individuality is of prime importance.

On the subject of listening… when a patient client comes to you and says, for example, that they want to do nocturnal or extended home hemo therapy, please don’t shut them down just because you have never done it before. Most dialysis companies are offering this alternative now. Yes, you as the nurse, may have to work a little to get all the information you need, but remember, it is for the patient. You may need to be their advocate with the nephrologist. Patient clients get very frustrated when staff tells them NO. They are within their rights to leave your program and go where they feel they are listened to. None of us want to lose a patient just because we have never offered a modality. Work with them and come up with a plan that works for both of you.

This is just basic “stuff” In future posts, I will talk more about some specifics and how to deal with them. I welcome input from the patient/clients who read this. My goal as a Home modality RN is to get feedback from you and come up with ideas that can help you both , going forward.

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Comments

  • Ro

    Apr 5, 3:37 PM

    Awesome article, great read!!! I will definitely print out and share this to family members that are in dialysis. This will help MANY new pt's more comfortable and trust us with their treatments and lives.

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  • James Wadee

    Apr 5, 2:20 PM

    Great and excellent article as teaching tool for learning how to teach!

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  • Elaine Brecher, LMSW

    Apr 5, 8:24 AM

    Gale,
    You hit this out of the ballpark! Each patient is a person unique unto themselves and should be treated as such. We are a team in this journey to best outcome for our patient who should be the leader of this team. As a social worker I am thrilled when nurses come to me to assist a patient with nutritional supplements and medications! Home therapy ROCKS!!!

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  • Henry P Snicklesnorter

    Apr 4, 5:27 AM

    Gale, your blog describes the training for Home HDI received here in Western Australia perfectly. The standard is extremely high, such that I have never had to call for help during a treatment in the four years that I have been on nocturnal Home HD. The one time I needed to ask a question was in relation to a minor adjustment of the machine for subsequent treatments. Empowerment is the basis of the training and and we are encouraged to have our labs sent to us, and further encouraged to understand and evaluate them. In my case, with the encouragement of my nephrologist, I determine the changes in medications, e.g. Aranesp, Iron and calcium dosage and frequency, dietary changes etc if needed. I advise my nephrologist via email of the changes and so far he has always agreed with them. Further, I am a passionate adherent of Long Slow Gentle Low UF Nocturnal Dialysis, as championed by Professor John Agar. I lead a very full 'normal' life and find kidney failure a minor part of that life.
    I truly wish that every one in the US could enjoy that which is the norm for us here in Australia.

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  • Pat Ligon USA

    Apr 1, 2:00 PM

    Thanks so much for this article. As a new dialysis patient I was totally overwhelmed with the new regimen I had to learn. When the nurse cares, the patient learns to trust and that makes learning easier. Patients are going through a major life change. Following the diagnosis I was devastated, and scared to death. I didn't know if death was imminent. The manual dialysis routines were lengthy and complicated and crucial. I hated dialysis. It took up precious time. After several months the light began to dawn. Now dialysis is my friend. It gives me life, and my job is to fill that life with joy and memories. My nurse and doctor are my best supporters. Thank you for all that you do.

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  • Theodôr

    Apr 1, 9:13 AM

    True dear all. Health care professionals are often forced to work protocolised rather than taking the time and adjust to the learning curve and pace, rather than getting the tick boxes filed.

    However I do not perform a real task in the technical proces I tend to ask during the training about the actual self- confidence e.g. level of self- efficasy which is needed for that person to make it work. Try to empower patients and nurses to talk about it and identify how we can support to make it work!

    Cheers

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  • Dale Williams

    Mar 31, 8:09 PM

    Good articleThe nurse has to be the advocate for the patient Because not everything Patient Situation is the same.I used to be on dialysis To hear my story visit Daletheauthor.com

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  • Gale Schulke

    Mar 31, 4:26 PM

    I do SO agree with you, John. We should not have to advocate, but when it comes to modality choice, sometimes we do.

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  • John agar

    Mar 31, 4:04 PM

    Nicely done, Gayle. My only comments is re the comment the the home training nurse 'may need to be an advocate for the patient with the nephrologist' ... surely the nephrologist OUGHT to equally be a patient advocate,
    and it is sad that seems not to always be so.

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  • Debra Null

    Mar 31, 3:19 PM

    Very good points, Gale. Thank you for taking your time to do this. I do plan to print off a couple of these to share with my clinic's staff. Do you mind if I do so with yours?

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    • Gale Schulke

      Mar 31, 3:58 PM

      Anyone is more than welcome to print off anything I write about. I am honored that you find it valuable.

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