A Clear Explanation

When someone is diagnosed with a chronic illness, it takes quite a bit of time and explanation for them to understand what they are dealing with, and helping them cope.

One of the most challenging aspects in working with people diagnosed with a chronic illness is compliance of treatments. As health care professionals, when we see patients refusing to accept treatments or not coming to treatments on a frequent basis, we get frustrated. Because we know the dangers if they don't comply with treatments. We think they are the stubborn ones. We think we have tried our best to tell them to come but it's their fault if they don't accept our help.

But we clearly missed out one basic step that we have all learned in medical or nursing school. Verifying with the patient if they understand what they were told.

In our current society, too many of us jump to conclusions based on one thing we see. In this case, because we see patients skipping treatment, we automatically assume they already know the side effects of missing treatments. What no one really does is following up with the patient the next time they come back to see if they understand the consequences.

Now, some patients do understand the consequences and are prepared to deal with it. But I would say most are not ready to deal with the ultimate consequence: death.

There are times that I have worked with patients and they start asking basic questions. Questions that should have been answered by the doctor when they were initially seen by them. Yet they are still asking me basic questions. But understanding a disease process is not like 1+1. It is anatomy and physiology complicated with pathophysiology. It will take time for someone to understand what is going on with their bodies.

As a health care professional, I have an obligation to teach and educate patients. I answer the basic questions that have been asked many times. Each person is different in their knowledge in the disease process, and each person will need a different explanation to help them understand it.

Here is a case study (this is to also help others who are in similar situations or need ideas to help patients understand what is happening to them):

A patient who has Stage 5 kidney failure (GFR < 15) and new to hemodialysis comes into the ER, short of breath, having chest pain, has edema in both lower legs and ankles. Blood pressure is high, at 180/110, heart rate of 98. Oxygen saturation is 90% on room air. Bloodwork shows Potassium: 7.2. Creatinine: 890. Urea: 25. Upon further questioning, you find out this patient has missed 3 of 8 treatments. The patient states he is new to dialysis, and each time he missed a treatment, he says he wasn't feeling well. So therefore he wasn't comfortable in getting treatment because he was too ill to go to the hospital.

The nephrologist has tried explaining to the patient blatantly that if they don't seek treatment, they will die. They will also not qualify for a kidney transplant because they are non-compliant with dialysis.

As a nurse, what do you do?

I can tell you the first thing of what you DON'T do. And that is assume. Do not assume the patient already knows everything. Do not assume they understand everything. Assumptions are the worst thing in health care, and it could get you into a lot of trouble.

The first step is to talk with the patient. Identify who you are (RN, RPN), and explain what you will be doing (I will be giving you dialysis treatment today because your blood work levels are very high). You then ask the patient open ended questions to see if they understand why they are getting the treatment. The best way to ask is: What has the doctor told you regarding the treatment? Tell me what are some things that the doctor told you.

This is a lot better than asking closed ended questions (Has the doctor talked to you? Do you understand it? Do you have any questions?). A lot of times, patients get anxious and scared to ask questions that they will simply nod. That is why it is up to the health care professionals to keep the questions open ended and keep the conversation going.

In this situation, the patient had stated he was new, and he didn't know what was going on. The first day of treatment, the nurse took him in and he was hooked up to the machine. And that was it. Now, sometimes it's also up to the nurse's judgment to see whether they are lying or telling the truth. We also have to look back at the 5 stages of grief:
1) Denial
2) Anger
3) Bargaining
4) Depression
5) Acceptance

When a patient first learns about their chronic illness, they will deny it. How can something like this happen to them? Why me? The next would be anger. They will get angry at anything and everything, even blame God for their illness. Then they will bargain. If I start to change my diet or exercise more, maybe this illness will go away and I'll get better. But when they realize this is a life long illness, they will hit depression. Eventually, they will accept the fact that this illness is real. They have it, and will have to live with it.

Now I can't say which stage the patient was in when he first came into treatment. But in the very beginning when everything is new, the patient will NOT remember everything that was said to them which include doctors, nurses, pharmacists, dieticians, social workers and coordinators. Everyone can say they already told the patient and taught the patient whatever needed to be taught, as well as paper handouts for them to read. But if the patient is in an anger or depression stage, do you think they would want to sit down and read all those papers? No, definitely not.

My first step is to ask the patient what they understand about their illness. See what they already know. Then you can assess what they don't know. And a lot of times, there are misconceptions or misunderstandings.

Explaining to a patient a disease process should not include difficult terminology. It has to be explained in a way that they understand, even draw out pictures if needed. The patient understood that being compliant to treatment is important, yet he still skips it. Why? The patient clearly said he wasn't feeling well. Because he felt unwell, he figured it was best to not force himself to get treatment.

Now comes the part of explaining what happens if they skip treatment. I used the blood work and his symptoms as a big picture. You can break it down to mini parts and then link it all together. For example:

1) Potassium is an electrolyte responsible for cardiac tissue (the heart). When there is an imbalance of potassium in the body, it will affect your heart. Your levels are way too high today (hyperkalemia; 7.2) hence why you feel chest pain and you are short of breath (hyperventilating). Too high or too low will result in your heart overworking and it could stop, leading to death.

2) Your kidneys are responsible for excreting potassium and other toxins in the blood. When your kidneys stop functioning and you stop peeing, the toxins build up, and you start to feel unwell. Hence why your potassium is also high. Because you have skipped out on treatment. There is no way for all those toxins to come out.

3) Since you have been feeling unwell at home, and constantly drinking lots of fluids (as we are taught to drink fluids when we are sick), your body is unable to get rid of the excess amount of fluids, hence why your legs are swollen. It is important to limit your fluid intake to 1L a day (show them a 1L bag of saline as an example).

4) Your blood pressure is very high because of all the excess fluid inside your body. It is important we get rid of that extra fluid to bring your pressure back down.

Keeping it in simple terms helps the patient understand what is happening to their bodies. Telling them they are experiencing hyperkalemia will not mean anything to them unless you break it down into simpler terms. It takes patience and a lot of feedback to help the patient understand. But telling them simply "they will die" will not help them take initiative to attend treatments. Scare tactics do not work on these patients. They need education and teaching.

After a complete breakdown of what dialysis is and what it does, and what kidney failure is, the patient was grateful that he finally learned the basics of his illness. He was able to tell me what I said, and stressed the importance of not missing out anymore treatments for his sake. It is the team's responsibility to follow up with the patient and their compliance to treatments. The teachings and education still need to be reinforced each time.

To wrap up, patients need a clear explanation of what's going on. Do not assume anything, but engage them in conversation to assess their understanding. Clear up any misconceptions or misunderstandings that they may have. Don't just lecture, but engage them and ask them questions as well to see if they understand. Lastly, as a team, we all need to work together to make sure patients remain compliant to treatment, and follow up with them to see how they are doing.