How do you approach your patients when they have a rare condition that you’ve never came across before? This is an important question to think about in relation to your patient’s’ overall experience. Aboutone in every 17 people will develop a rare condition at some point in their lives. So, you are most likely going to encounter them in your practice. Due to most rare conditions being incurable, you as a provider may feel overwhelmed by them. There is no need to be overwhelmed, and what should give you strength to conquer that feeling are your patients.
You patients look to you for answers and guidance, they trust you to be only person in the world who can help them feel better and ease their taunting concerns. If you are in turn feeling overwhelmed when that “rare condition” patient comes to you, then that patient will notice the emotion and start to lose hope. A part of improving the patient experience, is improving your approach to your patients and a changed mindset. Here are some things to be aware of when dealing with an overwhelming situation during a “rare” patient’s visit.
Acknowledge, Don’t Dismiss
When a patient comes to you with a rare condition that you have not been introduced to yet, it is best to acknowledge every symptom that the patient says he or she has experienced. Do not doubt or dismiss the symptoms, but embrace them and learn from them. This way you are engaging with the patient and learning at the same time. Dismissing the symptoms will only cause more anxiety for the patient and decrease his or her experience value with you.
Respect What The Patient Knows
You may feel frustrated with a rare condition simply because you do not or did not have the time to read up on the rare diseases themselves. However, with the rise of internet knowledge and patient groups, patients will know more about onward referrals, investigations, and treatments that could help them or have helped them. It is ok to inform patients that what helped one patient may not help they other, but the initial approach should be one that respects what a patient brings to the table (or in this case the exam room). Patients do not want to give up and they do not want their providers to give up either! This improves their overall experience.
Understand That Your Role is So Important
You should want your patients to feel very lucky to have you as their provider. They way to get that feeling going is by knowing your patient’s and the history, being honest about what you know and do not know, do you research after the visit and ensure the patient that you will follow up with more insight. Create an approach of going through your patient’s medical history and try to first investigate, then treat the condition. Encourage the patient to keep symptoms levels as low as possible, inform the patient that you are there every step of the way and actual be there. And when the patient returns with a good report, celebrate with the patient. At that point patients will feel they have a provider they can trust because they have had an experience that is worthwhile.