Hello everyone! I hope you are all doing well! Today’s blog entry is going to take a bit of a different path than what is usual for me.
I have been fortunate enough to be blessed with an amazing team of caring physicians and nurses. This has not always been the case. I have been fighting this battle for 6 years and like pretty much every chronic illness patient I have ever know, I have been through my share of physicians and nurses who have been judgmental, confrontational, unprofessional, and have treated me poorly. Given my experience and history, I am often asked (and have recently been asked by a good friend/newly diagnosed spoonie) how to talk with doctors and other caregivers.
I think what is incredibly important to note here is that while doctors go through extensive schooling, training, and education, they are people too. What I would also like to stress to physicians, is that patients are also people – not numbers.
Unfortunately we live in a managed care society where physicians are often times urged to focus on quantity rather than quality of care. Surely everyone here has also heard about the “study” that suggests that physicians only listen to their patients for 10-15 seconds of their visit (I’m not 100% of the exact time). I am going to be honest, I do not know how factual these figures are, but I can say that no matter where you go physicians will be under a tremendous amount of stress to balance seeing a large number of patients with providing quality care to their patients. Yay for insurance companies ruling patient care… My repose to this issue is as follows: if encounter a physician that only gives you 15 seconds to talk about what you need to talk about, or a physician who is constantly interrupting you, I would encourage you to try and find a new physician. A large part of communicating with your physicians is having a physician that you have a good rapport with; that is to say someone you trust, respect/respects you, and have a good connection and relationship with. If you don’t feel like you can express how you are feeling and your concerns to your physician, getting the help you need and deserve will be exponentially harder.
So, once you’ve found a physician/physicians who you have a good relationship with, how do you communicate with them? Here are my tips for communicating with your health care team:
- Write down any questions and concerns you might have. Many of us have poor memory, so writing down questions is paramount.
- If there are a lot (which is often the case with chronic illness), prioritize your questions and concerns from most to least important.
- If there are any questions and concerns that you are unable to address during your appointment, physicians often have an e-mail system open for communications with other physicians and their patients. Never hesitate to e-mail your physician or call and leave them a message.
- If your questions and concerns are not fully addressed, do not hesitate to ask for another appointment.
- I am also finding an increasing number of health care providers providing their patients with their personal numbers. While this is always an option to communicate with your nurses and physicians, I often reserve this method of communication for absolute emergencies. This is my personal preference because I recognize that they have professional and personal responsibilities outside of me.
- As stated, many chronic illness patients have brain fog, confusion, and just general crappy memory, so take notes regarding the appointment, answers to questions, etc. If this is not something you want to do, some physicians may even allow you to record audio of your visit.
- Educate yourself on your condition(s), test(s)/blood results, and keep track of your symptoms between appointments.
- Knowing about your health, medications, and how it effects you between your appointments is an important thing for you keep track of. This allows you to paint a better picture for your doctor about your overall health. Additionally, a lot of chronic illness patients have conditions that many of their physicians have little to no experience with. Being able to explain your condition to physicians not only gives them a better sense of your health, but it also provides you with the opportunity to educate them on something new.
- Many physicians offices have all of their records on an online system that is accessible by patients. If this is the case with your physicians office, I encourage you to sign up for this and take advantage of access to your health care records.
- Keep detailed logs of symptoms, medication side effects, etc., between visits. For example, I keep track of my symptoms (and any activities that lead up to them), my oral intake (though limited, this allows us to see if my oral intake is increasing or not which ultimately allows us to see if the medications are working or not), etc.
- Advocate for yourself/bring someone with you to advocate for you
- Never be afraid to ask questions about your health, ask for clarification of your disease(s) and treatment(s), and ask for explanations about your disease(s) and treatment(s). It is important that you know about your health, any treatments you are undergoing, and why.
- As mentioned, physicians are people too. They are also people under a tremendous amount of stress. As such, sometimes they will sometimes get off topic from your main concern. If this happens do not be afraid to steer the conversation back in the direction you want it to go. If you are unable to get the physician back on track, just hand them your list of questions and concerns. Or as I put it to my close friend/newly diagnosed spoonie “Make a list of things you want to tell Dr… That way you don’t forget if you get overwhelmed. If nothing else you can just shove it in their face.”
- Don’t be an ass, but also do not be afraid to stand up for yourself. This is your health after all. If the physicians are doing something you are confused or concerned about, or simply do not agree with, then tell them.
- When in doubt, bring someone with you. If you can’t advocate for yourself (anxiety, stress, etc.) then bring someone with you who is able to keep track of any questions and concerns you have, but can also advocate for you if the need arises.
- Communicate between visits. Though we talked about this above, I felt it was important to make it its own little section. If your physicians participate in some sort of e-mailing system that allows patients to email with their physicians, I would HIGHLY encourage using it!
- All of my physicians are part of a larger group of physicians. They participate in an online system that allows for communication between other physicians in the group, between physicians and patients, and allows patients access to their chart. This allows me to email my physicians with any questions, concerns, or updates between visits.
- If you have multiple, complex health issues many physician groups have case management services. If your physicians office has case management, asking for a case manager could provide you with a invaluable, integral team member. I have a nurse case manager through my PCP’s office. Instead of e-mailing or calling my physicians directly, in many cases I will communicate with her. She is probably the most vital member of my team. She manages my care (obviously), and communicates between all of my physicians (including any physicians I have that are not within their group). She keeps tabs on me in between visits, and honestly just reminds my physicians of what we are doing or have already done. Though in all honesty, I am unfortunately one of those patients that sticks out among the thousands of other patients physicians see.
I hope that this post was helpful. It is something I have been asked many times, particularly by newly diagnosed spoonies, and I felt it was important to get out there. Though I’m sure there are thousands of other sites out there that convey the same message.