Thursday, October 21, 2010

Top 10 Qualities of a Great Patient

After listing my, “Top 10 Qualities of a Great Physician”, I couldn’t help but follow up with this list. After almost twenty years of medical visits and hospital visits with a child with complex medical issues, I certainly can’t speak for any physicians, since they would be a better source of what makes a really good patient, however I will share with you my rules on interacting with physicians. As Dear Son’s mother, advocate and caregiver, I’ve developed some systems and some rules that I try to follow to make things go smoother.

1.) Be on time. If you have an appointment, make sure to allow enough time to get to your appointment on time. I try to add in the travel time, parking time, time to get Dear Son’s wheelchair out of the car and get him out of the car plus time to get him ready, myself ready and a little extra time for the last minute emergencies. For Dear Son, an appointment is usually four hours out, meaning I have to start his food four hours in advance of an appointment for him to finish on time (he’s on gtube feedings), plus time to change him, get his medications, etc. No one likes to rush and I don’t like to rush Dear Son. It’s much nicer to take your time and make it a good day. Also, Big Academic Medical Center has limited parking so parking alone can add fifteen to twenty minutes to a visit unless you valet park, however there are long wait times for that as well.

A good rule of thumb is that when you are getting ready, plan for the worst case scenario. Bring lunch or medications for your child so if the physician is running behind, your kids aren’t hungry. I would often pack Dear Son’s lunch and medications and then I could give it to him in the cafeteria of the medical center or in the waiting room if needed since medications can’t always wait. It’s always nicer to have everything with you so your kids don’t have to be hungry and wait until you get home, especially if they can’t eat anything by mouth and rely on tube feedings.

For diaper changes, bring everything you need, including a plastic bag to tie up the diaper. No one wants to smell a dirty diaper in the examining room.

2) Bring a List of Medications/Supplements That You Are Taking. I keep an emergency information sheet for Dear Son that lists all his medications, the name, the strength, the dose, etc. I have this typed up and keep it on hand at all times. For myself, I don’t take any medications but do take some vitamin supplements. Naturally, my list is much shorter. Take the time to make a formal list, and type it up in Microsoft Excel or on your pc if you can, so it’s easier to read. Your visit will go a little faster if you have that information. This saves time since they can just make a copy for their file and you don’t have to sit there and try to remember the name of the prescription, the strength and the dose, especially if the patient is on multiple medications. You should also know the reason that medication was prescribed and by whom.

With regards to electronic medical records, I realize that sometimes this information has already been entered into the system, however that doesn’t mean it’s accurate. Always ask to check the information to make sure it’s accurate.

And finally, in addition to a list of medications/supplements, you need to bring your insurance card to the visit.

3) Write Out Your Questions /Concerns in Advance. I get ready for the visit weeks in advance. I have the date in my calendar and as I think of questions, I simply jot a note in my weekly planner of things to discuss on the visit. Then, when it’s time for the actual visit, I have my questions all ready. The night prior to the visit, I take out my medical notebook, write the date, physician name and time and then write a bulleted list with my questions. This is also a great time to see if you need any prescriptions for any medications you are on. It’s much easier to write them up in an office visit than calling the office and having them call it in. Having your list of questions, saves you time and saves them time. Be respectful of their time. They have a lot of patients to see.

4) Keep it Brief and Professional. View your visit as a business meeting and less as a social visit. Be polite and be professional. Stick to your questions. This isn’t the time to share family photos or to give them all kinds of information. And this should go without saying but always remember that your physician is just that, he or she is your physician. As a result, share only information that is needed for the visit and leave the personal information out. They’ll respect you more if you don’t waste their time.

5) Give Good Information. This can be hard at times. As you prepare for your visit, try to be a little more specific with regards to your symptoms and concerns. For example, let’s say Dear Son is having seizures. Typically, I’ll notice that he’s having more issues or crying out more than normal. I know it’s different however I really need to give the doctor more information than that. Things that will be helpful will be noting the frequency, duration, type and what exactly Dear Son is doing during the seizure. It can be helpful to track them for a few days.

So let’s see how good information would translate in the office visit. Dear Son began having more seizures a while back. I knew he was having more of them however when I started paying attention and tracking them, I noticed that the bulk of them occurred between 1:30-3 p.m. in the afternoon. I also knew that Dear Son received most of his medications in the morning and evening and very little around noon so was most likely crashing. In this case, I called the office in advance, explained the situation and asked if the physician wanted drug levels of the medication. He did. When we arrived at the office visit, I could give him the information in more detail and he could look at the drug levels. As a result, even though his medications were in range, he increased the noon medication. Had I not called in advance, it would still have been fine. He would have just ordered the lab test at the office visit and then would have made the change once he got the information.

A second example might be if you were having back pain. If you have back pain, you’ll want to note the location of your pain (is it down your leg or lower back or where), the type of pain (is it sharp, is it throbbing or is there numbness), and does it go away with medication or rest? Is it worse at any particular time of the day? For pain, you also want to include the intensity of the pain. On a scale of 1 to 10, is your pain a 5, a 7 or a 10? Is it a 10 every day, five hours of the day or what?

For children who are non-verbal, pay attention to their facial expressions. As their mother, you know when pain is not normal and what face represents severe pain. Last November, when Dear Son was released from the hospital, he had severe pain and was screaming for weeks. I kept calling the doctor and he’d make a change, or admit him or add a medication or whatever. Dear Son kept crying. At one point, they thought that he might just cry all the time now. I said no, that Dear Son is in severe pain and that is not like him. I stuck to my guns and it paid off. On the second admission in January, they were able to locate the source of the pain. Be persistent when you know you are right. It’s less about being right but more about taking care of your children so they don’t hurt. Remember, you know your child better than anyone else. The doctors want to find answers as much as you do.

Next, think about the problem and how it affects your daily activities? This is huge. If you have an issue that is affecting your work or home life, meaning you can concentrate or do your work because the pain is so severe, you need to get it addressed. These are examples of the types of information that is helpful for the physician to make a good diagnosis.

And finally, don’t forget to mention any major changes in your life. If the symptoms presented themselves after someone died, or if you’ve have a divorce, job change or any other major life changes, whether positive or negative, you need to mention it. Stress can also affect us and that information would be valuable.
I should also note that if things have changed significantly and you’ll need more time to discuss these issues, you may need to call the doctor’s office in advance, to ask for a longer visit time. Some office visits are scheduled every ten minutes, every fifteen minutes or every forty five minutes. It varies depending on the specialty of the physician and type of visit. First visits are often given longer times. That doesn’t mean you need to take x amount of minutes, just address your questions and move on.

6.) The Internet-I thought it would be important to address the internet here. Many people read a lot of medical or health information on the internet. As you know, not all of it is true however it’s hard to know what to believe sometimes when you don’t have the knowledge base of a physician. From a physician’s standpoint, it can be hard to keep abreast of all of the information out there as well. However prior to an office visit, if there is something that has peaked my interest online, I’ll try to research it a bit more on PubMed and then if it still holds water, ask the physician. What I recommend is that if you have a question, bring a copy of the information with you and ask the physician. Please note, they do not have the time to sort through pages and pages of information you have gathered from the internet. Pick and choose what is important to you and ask them.

7.) Follow instructions.-Once the physician has mapped out a treatment plan, follow it. Take the medication as directed and/or follow up with anything else they have given you. For example, if they have prescribed nebulizer treatments two times a day or whatever, follow through. When you have patients with chronic and complex health conditions, like Dear Son, the physicians will have a lot more respect for you if you take good care of the patient and follow directions.

8.) Use Paging Wisely and Only When Necessary. Physicians are busy people and I try to respect that by paging them only when necessary. My rule of thumb is this…if it’s something the nurse can handle, I’ll call the office and speak with her during normal business hours and if I have a concern for Dear Son, that I think the doctor needs to address immediately, I might call and speak with the doctor. A good rule of thumb is this, if I have to think about whether or not to call the doctor, it probably isn’t an emergency. If I know I have to call the doctor, then it’s probably valid. It’s kind of like calling the fire department. You don’t always have to call them if you smell smoke, however if you have a fire, it’s time to call.

If I have an emergency, I’ll page the doctor and get instructions on what I need to do. For example, if Dear Son is having multiple seizures that are escalating, I’ll page the neurologist and ask him how to proceed. He may ask that I take him to the ER for an admission or he’ll tell me how to treat him at home. I try never to abuse this privilege and I feel it is just that. This goes back to the reason above about being professional. I don’t ever want to be in an emergency situation where the doctor doesn’t take my call because he thinks it isn’t valid or that I am just calling him unnecessarily. Physicians have lives and families too. While it’s true they may have dedicated their lives to helping others, that doesn’t mean that anything goes and they need to be available 24/7.

9.) Medical Errors/Mistakes.-There may come a time when things don’t go as well as you expected or don't go well at all. In these situations, I try to address them privately. In the case I mentioned the other day, where I had issues with the attending specialty doc not visiting in the ICU, I addressed it at an office visit, a few months later. Some things need to be addressed immediately. The bottom line is that I try to treat people as I’d like to be treated and give them an opportunity to respond. Overall, I think I have pretty good relationships with all of his physicians and I can’t think of any time where I’ve had any issues with his primary physicians.

10.) Say Thank You. Physicians give up a lot of time to do their jobs and to take good care of you and your family often at the expense of their family. When they go above and beyond the call of duty, be sure to thank them. Everyone likes to be appreciated and it’s nice when you notice. Just don’t overdo it. You don’t need to send a thank you after every hospitalization, just use good judgment.

In summary, when you have a child with complex medical issues, it can be a lot to deal with over twenty some years. On the flip side, I never keep a physician that I don't like. If I don't personally like a physician, for whatever reason, I'll simply find another doc. There are so many good physicians, who are smart, kind and likeable, that there really isn't any reason to settle for less. And for me, if I have to be in contact with someone for long periods of time, as in the case of Dear Son, I want to make sure it's a person that I like and respect and someone that I feel comfortable addressing any concerns or questions that I may have. I've been very fortunate over the past twenty some years to have a nice group of physicians who have taken great care of Dear Son and myself, so I try to take the time to return the favor.


Em said...

Hi Dear Mom,
Generally I agree with this post--having been a patient my entire life with various medical issues, a lot of these are things I definitely do each visit.
But the one about keeping it strictly professional I find a little stringent. I've been seeing most of my doctors since I was a child, and they, of course, know my family and my siblings. They are an integral part of my life, and I do see a lot of them as my extended family--it's hard not to when you spend 20+ years with them! I think this really helps the patient care, actually, because I am so much more to them than just "the patient." And it goes both ways--I know about their families, spouses, pets, etc.

Of course in some offices this doesn't fly, but I find that a personal interaction is, in most cases, desirable and not a detriment to care.

Dream Mom said...

Em-Yes, I did think about that a bit last night and I didn't mean for it to come across that harsh.

I guess what I was really thinking about were two things: the little old ladies that come to the doctor when they don't have anything wrong, because they are lonely or just chat non-stop about nothing while people are waiting (I've been to the doctor with my Mom, lol.) and the second thing is just being careful not to go over that professional line with being too friendly.

That doesn't mean that I don't like and respect Dear Son's doctors it's just that I am a little uncomfortable as it is with physicians knowing every part of our life, due to Dear Son's condition, so I guess it's more of a privacy issue where I am concerned. I had hoped that came through in the last paragraph and maybe I could have done a little better job on that point so it doesn't come across so stern. Thanks for your input.

Em said...

Oh TOTALLY, do not want to be one of those women...:) But sadly if I'm in the doctors' offices it's because something needs done or we're making sure that everything is holding steady. :)
Overall, though, a great post. And I very much understand the part about wanting privacy when so much of your life is exposed.

Bill said...

Both of your Top 10 lists should be required reading in both medical schools and doctors' waiting rooms! Thank you for taking your years of experience in medical settings and sharing what you've learned in such a helpful, thoughtful, logical manner. Kudos!

Anonymous said...

Bless you for this.

A lot of what you says boils down to organization. We see from a lot of your design posts that you are great at it.

I can't tell you how hard it is to get someone like I saw last night - multiple medical conditions, but he didn't know what any of them were, knew he took seven medications, but not why or what they were...and needed medication treatment.

- Same anonymous as last time

Dream Mom said...

Thanks, everyone.

Anon-I appreciate your compliment on the organization; I needed that today.

I can't imagine trying to treat patients when you don't know what they are on. I always worry about the special needs kids-some parents just don't have the tools or experience to do any better. I've overheard some mothers in the ER who didn't have enough money to get the kids medications and then start and stop medications. It's really very sad.

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