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.

Top 10 Qualities of a Great Physician...A Mother's Perspective

It’s no secret that I spend a lot of time in hospitals. Dear Son has endured some sixty plus hospitalizations and I’ve been there for every one. Over 90% of these hospitalizations have been at a teaching hospital or major academic medical center so I’ve encountered physicians at all stages of their careers. I’ve met residents, fellows and attendings and what is most interesting is that the standout physicians are standouts from the beginning. So let’s imagine for a minute that I am sitting in a patient room at a hospital with Dear Son. Here are my thoughts on what makes a great physician from a mother/caregiver’s perspective.

1) They are always prepared. Much of the work is done before the physician even steps through the hospital door. Good doctors will know three things: the patient’s name and baseline, diagnosis/medical history and finally, what brought him into the hospital this admission. Most attendings do this however many residents don’t.

In a good situation, a doctor will know that Dear Son has a history of seizures from birth, is severely developmentally delayed, is non-verbal, non-ambulatory, on a feeding tube, can’t clear his airways with the risks being seizures, aspiration and respiratory depression and what brought him in this admission.

Residents who are unprepared, rush in the room, don’t read the patient’s medical history, then ask if his appetite is poor now that he’s sick or if he’s weaker than normal and not walking as much. They’ll want a quick update as to how he’s doing so they can update the attending. Their goal is to get the information as soon as possible. They often won’t identify themselves so I am at a loss to know what speciality they are from (Peds, Neurology, GI, etc.) which would help me better frame my answers. I can tell by their questions, asking me if he eating less by mouth, that they’ve never even read the medical history since Dear Son eats nothing by mouth and eats via a gtube. When it’s that obvious, I’ll ask that they take a minute to read the history and then come back and I’ll be glad to answer their questions. Of course, it’s not just one resident that comes in the room, but multiple residents, from multiple shifts, from multiple specialities, and that can all be in just one day.

Being prepared is about respect. I would never dream of walking into a client’s office and meeting with a CIO or anyone in the organization without having done my homework. I would know who they were, the history, their history with my company, customer support issues and as much as I could, as well as reading through their entire contracts so I would not be surprised by anything. Translated, it means being prepared. Now I do understand time constraints in a hospital setting, however if you are involved in the decision making process with patients, you have to take a minute or two to get the basics which include the baseline, medical history and the purpose of the admission. I think residents forget that patients are their clients. Residents shouldn’t demand respect, they should command respect by their actions. Being prepared commands respect.

For Attending Physicians, I most often see this step omitted in new patient histories. For example, sometimes if I make a visit for Dear Son with a new physician, the office will send out a packet to be filled out with the patient’s medical history. It might take three hours or so for me to complete this packet of information and the physician will not even look at it prior to seeing Dear Son. If you ask for information, then read it prior to the office visit, even if it’s five minutes prior to walking in the room. I don’t want to spend three hours assembling information for you and then repeat every detail once I am in the office. If you want to discuss it in the office visit, then don’t send out the packet. My time is important too. I don’t have time to do this twice and I don’t want to spend two hours at an office visit.

2) They always introduce themselves. When meeting someone for the first time, we all value a proper introduction. It’s good to know the other person’s name, their title and a little bit about them. When a person walks into the hospital room, I want to know three things: who they are, their specialty, the purpose for their visit.

A great introduction goes like this: The Fellow walks into the room, standing tall and appears calm and not rushed. He smiles, says hello and asks if it’s Dear Son, introduces himself by saying his name and specialty, then shakes my hand. He asks for my name. He then says a sentence or two letting me know he’s read the patient history, then asks me how he’s doing and asks for information.

A poor introduction goes like this: Resident rushes into the room and wants a quickie update. They look frazzled, are hurried and demand answers, regardless of what you are doing. They ask questions that indicate they haven’t read any patient history and when you ask them if they’ve read it, they get annoyed and still ask the same questions. They waste your time and theirs. The reason a poor introduction is bad is not only because it sets things off on the wrong foot but because it does not allow them to get good information about the patient to make good decisions. If I don’t know who you are, or your specialty, I can’t answer questions well. The worse introductions in my experience are always “pediatric” specialities. They rarely introduce themselves, rarely read the medical history, always appear hurried/rushed and do a lot of unnecessary work. More often than not, they don’t spend their time wisely. This is just my experience at this hospital and certainly does not cover all residents.

The best introductions in my experience over the last twenty years are pediatric neurology fellows. They are smart, cool, calm and collected. They have great manners, are very bright and when you talk to them about their specialty, they just glow.

3) They are good listeners. Having read the medical history, good doctors ask good questions and listen to what is said and what is not said. They read between the lines. They know what information is important to the decision making process and what information is important in caring for the person. A good doctor knows both.

4) They look you in the eyes. I probably wouldn’t mention this had it not been for the electronic records. Electronic records are just that, electronic. Take the time to look at the patient when you are speaking to them. I had one visit where the entire time the Attending Doctor sat with his back to me as he asked the questions, entered the information into the pc, then edited the information in the pc, then re-edited it again. If you want to have a conversation, have a conversation. If I have a situation that is uncomfortable for me to ask you about, I’ll never ask that with your back to me. And that may be the one piece of information you need to make the right diagnosis.

5) They treat everyone well/equally. This is a symbol of class and but something that is so closely aligned with being a great doctor, that I had to mention it. Great doctors are liked by everyone, not just the patient’s, the patient’s mother or by the caregivers. They treat everyone well and I’ll always hear the hospital workers sing their praises as they are cleaning the room or doing whatever task is at hand. When a physician is really good, I’ll hear that from every level of the hospital staff.

6) They allow enough time to address your concerns. The best example of what to do is by talking about what not to do. A poor Attending will come into the patient’s room, say hello, ask how the patient’s doing, get a page, take the page, then say the visit is done and go take the page. I haven’t had a moment to ask any questions and I’ve waited all day to see them. The bill comes in the mail with a charge of $765.00 for that visit.

7) They are good communicators. Good doctors communicate well. They tell you not only what they know, and what to do but what to watch for or what you should be concerned about. In communicating well, they help define the parameters around knowing when it’s an emergency or when to seek medical care. That saves their time and mine.

8) They are kind. There is something about kindness that shows through. You can make a right decision or you can make a right decision for that patient. If you get lucky, they are the same.

9) They always take time to see you when you are in the hospital. This is huge. After all, when you are the sickest, isn’t that the time when you want to see the doctor the most? A good doctor doesn’t always have the time but he always makes the time. That’s the difference. Dear Son has been in the hospital a lot. His medical condition is complex and he’s been in many life threatening situations over the past few years. We’ve spent a lot of time in the ICU, he’s been on ventilators a few times, he’s had a transfusion and we’ve had a few admissions where they didn’t know what was going on. As a result, we’ve had a lot of different physicians that have cared for Dear Son. In times of crisis, it can be challenging as a mother when you hear different physicians talk about what they should do for Dear Son and sometimes I’ll admit that I am not sure who to trust so to speak. It always puts me at ease though when his physician walks in because I know that he knows Dear Son the best and because I know that he’s overseeing or working with the physicians with regards to Dear Son. Sometimes, when you are in a medical crisis, it helps to have a physician that knows the patient very well involved in order to overcome the medical crisis. We have been very fortunate to have a doctor who always makes the time to see us.

On the flip side, we had an incident last year with an attending physician who also happened to be the department head. This particular physician had only seen Dear Son once in the hospital and had let the fellows/residents see him. In this case, Dear Son was seriously ill and it was life threatening. I had many questions and this particular specialty was new to me so I didn’t have much experience in terms of what to expect. It was a stressful time for me. During this time, there was a week where this doctor had never come into see Dear Son or talk to me. At the follow up office visit, I sat down with the doc to address this. I explained the situation in the hospital and said that I would need them to come by more often in the hospital settings since I would have questions and that I would need them to come by more often than once a week. I explained that this was a new specialty to me and that I would have questions and would want to get answers from them versus getting these answers from fellows or residents that did not have their experience. The Attending Physician became very angry and then read me out for about five minutes telling me that they were every busy with clinic and all of the demands and that they didn’t have time to do this. I remained calm and said that was fine, but if that Dear Son didn’t fit into their practice, I would have to find another doctor. I explained that I need a physician the most when Dear Son’s in the hospital, not when he’s in clinic so to speak and that if they don’t have time to see us in the hospital, then they weren’t the right physician for us. Notice, I didn’t say they weren’t a good physician but only that they weren’t the right fit for us. After they went on again, they calmed down and the office visit went fine. It’s not always easy to have these conversations but sometimes you have to have them. I always like to give someone an opportunity to respond to an issue before moving on.

Some months later, we had another crisis and I had to page this Attending Doctor. The Attending was leaving on vacation on a road trip within the hour and couldn’t have been nicer. They addressed the crisis, mapped out a plan, saw us in the hospital and did a great job at our follow up visit. Addressing the situation in clinic made all of the difference. I also made sure to thank them at our follow up visit.

10) They admit it when they make a mistake. This is also important. Everyone makes mistakes and physicians are no exception. It’s o.k. to acknowledge a mistake, apologize and move on. It’s not o.k. to ignore it. Ignoring it sends the message that they don’t care, it wasn’t their fault and the patient isn’t important.

For example, I had a situation where a well liked and well known physician made a medical error that nearly caused Dear Son’s death. It was more than likely a bad judgment call but how they handled the situation was more than disappointing, it was enraging. The mistake occurred and Dear Son nearly died. The doctor came to see Dear Son after the ICU docs and docs involved in Dear Son’s care strongly urged him to see Dear Son. He walked in the room and said Dear Son wasn’t as bad as they said. He got a page, left the room and never said a word. He charged me for the visit. During the hospitalization which lasted several weeks, he refused to see Dear Son. He never came by. I asked to see him now that Dear Son had transitioned to a regular floor and off the ICU floor. He refused to stop by. I spoke with the Peds Attending, whom I knew from the other hospitalizations and explained the situation privately to him and asked him if he could help arrange a visit. The doctor still never showed. We tried to see him for a follow up office visit (while we were still in the hospital) and he still refused to see us.

In the meantime, I went online while I was in the hospital with Dear Son and researched the largest medical malpractice firm in our state. They had only lost one case in their career. I was prepared to call them when I left the hospital. Finally, the Attending Doctor arrived and said he heard that I wanted to speak with him. I explained in very terse terms that I had some concerns I had around the surgical procedure and the fact that I made multiple attempts to see him however his behavior was unacceptable and that I didn’t appreciate that behavior. I said that I wasn’t going to beg to see him and that if he didn’t want to take the time to talk to me that we could talk through our attorneys. It got his attention, he sat down and answered all of my questions. I won’t go into detail however this entire situation could have been avoided had he simply spent five minutes with me in the hospital room in the ICU. I went above and beyond the call of duty to attempt to meet with this physician to discuss this situation and I’ll never do that again. In the future, if they don’t want to meet, I’ll just proceed as I need to. I can accept a bad decision; I can’t accept it when they ignore me. This issue came many years after a previous medical error by a surgical nurse caused over $500,000 in multiple hospitalizations and my son never walked again. Medical errors are serious business.

In summary, I’ve learned a lot about physicians over the years. We’ve been fortunate to have some wonderful physicians that take excellent care of Dear Son. Our Pediatrician did a wonderful job for many years taking care of Dear Son. Our Pediatric Neurologist has done a wonderful job over the past twenty years in caring for Dear Son. I often am at a loss to know how he manages to give such exemplary service over such a long period of time. In the end, it’s not a hospital that makes a facility great, it’s the doctors that make a hospital great. And when you or a loved one are sick, the person you want to see the most will always be “your” doctor, not another Attending, not another Resident, not a Hospitalist or anyone else.

Note: Dear Son is eighteen years old and suffers from seizures, dystonia and severe developmental delay as a result of a random mutation of the ARX gene. He also has a progressive neurological disorder and is in the later stages of the disease.