Why Shared Decision Making Matters for Dialysis Patients

By Caroline Wilkie

Caroline Wilkie

Caroline Wilkie

If you are on dialysis, or have been on dialysis, you have benefited from the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (KDOQI) guidelines. These are basically a series of best practices for diagnosing and managing kidney disease at all stages.

Now NKF has released an update to KDOQI’s guidelines for hemodialysis. This update is important to patients because it increases emphasis on shared patient-physician decision making when it comes to our dialysis care. Shared decision making is the collaborative process that allows us to work with our healthcare providers to make dialysis care decisions together. It takes into account not only the best scientific evidence available, but our values and preferences as well.

I’m 30 years old, and I’ve been on dialysis since March 2010. From an early age, I have been an active participant in my dialysis healthcare and made decisions with my healthcare team. Here are some of the tips I think are important for both patients and healthcare professionals to remember when it comes to shared decision making (SDM):

Important SDM Tips for Those on Dialysis

  • Research Your Options. Doctors and nurses only have so much time, so you have to accept some responsibility for your care. You need to be proactive to seek out the best treatments.  Learn as much as you can about your condition and how it is managed. Some patients don’t want to be involved, while other patients simply assume their healthcare team is giving them the best options. You won’t know for sure unless you research your options. NKF can put you in touch with patients and professionals who can give you perspective on your condition.
  • Squeaky Wheel Gets the Grease. Establish a working relationship with your healthcare team and don’t be afraid to push back if you don’t understand a decision or are not totally on board with how your treatment is progressing. Speaking up is the only way to make the changes you need to live the best life possible on dialysis.
  • Ask Questions. Ask questions from day one. Give yourself a goal to ask a new question every day. Personally, I would take a notebook to write things down so I would remember the questions I had and the answers I received.  You’d be surprised how knowledgeable you become in a short period of time.
  • You Control Your Care Team. If you don’t feel like you’re getting the care you need, find someone new and get a second opinion or even a third opinion. Sometimes personalities don’t mesh well together, so it’s important that you work with someone you can trust and work with in an honest and open way.

Important SDM Tips for Professionals

  • Get Patient Approval. This is what the whole shared decision making culture is about. As a medical professional, you may know what a patient needs, but it’s equally important that we understand and have a say in our treatment. For me, I appreciate when a healthcare professional discusses changes in treatment, and asks to make those changes, before moving forward.
  • Tone is Key. I get frustrated with paternalistic medical speak. When talking to patients, think about how you would talk to your mother or father. Imagine someone you love in the same situation and think about how you would relay important health information to this person.
  • Ask instead of Tell. Some of the best learning can come from posing questions. For example, if you notice a patient having problems with their fluid levels, don’t go straight to saying how problematic this is for their health. Instead, start the conversation by asking what may have happened over the past couple of days that could have spiked their fluid. Then, work together to manage causes of the problem.
  • Spin it Positive. Many professionals are conscious to make positive notes about how we are managing our condition when we are off of dialysis. This positive reinforcement helps validate that we have control over our health and our care.
  • Keep it Simple. It should go without saying that many patients don’t have the understanding of complex medical issues, that’s why it’s important to practice simplifying complex ideas into easy-to-understand components. That being said, don’t dumb it down, we need to know what is happening to our bodies and why changes in our care are being made.
  • Be Honest. If a patient has a preference that may go against your advice, make sure to explain the outcomes and why you are making your recommendation. For example, if a patient is getting off of dialysis 15 minutes early every day, be sure they know how this affects their body over time. Most of us are adults who want to live and have the best life, we appreciate if doctors are honest and direct with us.
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