As a patient with a chronic disease such as End-Stage Renal Disease (ESRD) it is important that you be engaged. Engagement means being a partner, or better yet coach, with your healthcare provider and actively participating in your personal care and treatment planning. Research has found that engaged patients have a better quality of life than those who do not participate in their own care. It was also found that those who are passive in their care, and have difficulty saying no, they often feel overwhelmed and anxious; resulting in stress, low self-esteem, and even depression. Therefore if you learn to be appropriately assertive and engaged in your care, you will be a better advocate for yourself, and realize better medical outcomes. The following strategies will help you become a more engaged partner/coach.
Sometimes a misunderstanding or an inaccurate diagnosis can occur because you haven't provided your care team with all the details needed to make an accurate diagnosis. It is very important that you give your team a proper, thorough description of your symptoms, feelings, and any particular episodes you've experienced that have caused pain or have hampered your daily activities in some way. If you find that you can't remember all the symptoms, or that you "blank out" when talking to your doctor, keep a notebook and write down the symptoms as they occur.
Be knowledgeable about your health issues by considering doing your own research. Keep up-to-date on available treatments, medications and research developments using resources such as KidneyBuzz.com. There is no harm in raising information with your healthcare team that you have taken the time to research in relation to your disease.
One of the most difficult things for many patients is knowing how to ask questions of your Doctor, and your other healthcare professionals (Nurse, Dietitian, Social Worker) that will elicit targeted answers to help you better understand the situation. The reasons for the difficulty are partly emotional, and partly because you may not know what exactly to ask. Here are some techniques to help you become more assertive about honestly stating your requests, issues, or concerns.
- Know what outcome you want to achieve
- Pick a moment when you are emotionally in control
- Think ahead of what you want to say
- Look directly at the person to whom you are speaking
- Begin your statements with “I” to explain your feelings rather than "You." For example, instead of saying, “You never check with me before modifying my treatment plan,” say instead, “I feel ignored when you change my treatment plan without consulting me first.”
- Be direct and honest about your feelings, goals, and intentions
- Say no to unreasonable demands and offer an explanation if it is necessary. There is no need to apologize or offer excuses.
Get support. If you don't feel able to voice your concerns yourself (for example, language barriers, stress, depression, fear, stuttering, etc.), ask someone you can trust to come along with you. You can still do the research and provide your support person with the list. You may find that you don't even need this person to speak for you, that their presence is sufficient strength for you, but it ensures that there is someone present who cares about you. Even if you do most of the talking, your friend can help you remember important points or issues you want to address.
If you don't feel comfortable with or trust your existing healthcare provider and Nephrologist, seek advice from another Nephrologist about changing your provider. This may not always be possible, but it is a perfectly acceptable option. Federal regulations require that each dialysis clinic has a Grievance Procedure in place to address and resolve problems. KidneyBuzz.com recommends that if such a problem arises about your care, you should address it first with your Social Worker, and follow the steps outlined in your dialysis facility's Grievance Procedure.
Think of your healthcare staff as your team of which you are the coach. It is your health and you ultimately get to be the boss, making the decisions. However, you also get to benefit from their experience and knowledge. Remember that you have the right to refuse treatment or tests. If you are dissatisfied with the options presented to you; then seek further opinions, or you can opt out of treatment or tests altogether. It is your body and fundamentally your choice; just be sure you are considering the advice of those who care about you.
"Be Assertive: How to Stand Up for Yourself." EverydayHealth.com.
"Secure Nursing Blog." Dialysis: Five Ways to Be Active in Your Care at the Hospital.