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:
- Do you learn best by getting your hands on?
- Do you prefer to read the procedure first, or have me explain it?
- Do you need to take notes?
- 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.