What makes for a successful and productive office visit? How do I make the best use of a short time? How should I prepare for a visit to my doctor? What can be done in a phone call? What kind of email might be helpful? How can I be an active participant in my care? This interactive session will explore some strategies for making the best use of your interactions with the health care system.
Please note, for the sake of brevity, that we have used “you,” which can refer to you as the patient, your spouse or your child/children. For the same reason, we have also used “HCP” to refer to any of the numerous health care providers that you will encounter on your journey, such as doctors, nurse-practitioners, nurses, genetics counselors, social workers, therapists, and many others important to your care who are not listed here.
Many people with mitochondrial disorders have to see more than one HCP (health care provider). To make the best use of your time and to get the most out of interaction with your HCP, you want the best possible match between the problem you need solved and the provider you ask to help. You wouldn’t ask your plumber to fix your car, or your babysitter to do your taxes (unless, of course, your baby sitter is an accountant!). This doesn’t mean that you shouldn’t tell your cardiologist if you are having stomach pains, they may be related – but don’t expect the dermatologist to help with double vision or the ophthalmologist to help with dry mouth, or either one to help you with a letter of necessity if a wheelchair is needed … Consider which problem to bring to each health care provider, and you’ll be much more satisfied with the interaction! And remember that it will not be possible to have every one of your care providers be an expert in mitochondrial disease. Sometimes what you need is the best physical therapist working with a responsive primary care doctor and all working with you and your mitochondrial team. You can have Mitochondrial disease and still have asthma, and the mitochondrial doctor is not likely to know what to do about your asthma!
Be organized before arriving at the doctor’s office!
- Health care providers are busy and have limited time. When you book your appointment, ask how much time you will be given to spend with the HCP. If you suspect that you will need more time than what is usually given, ask for an extended appointment before the visit, or book more than one visit.
- It is important to be sure you communicate with the HCP’s office before the visit to know what to expect and what you will need to bring. Do you need a referral? Do medical records need to be sent prior to the visit? How long before the visit do you need to check in, and if it is a clinic in a hospital do you need to check in at a main desk before you go to the clinic? Will you be seen if you are late? Do they have oxygen if you need it? In a few offices you can speak with the HCP before the first visit, but you will usually not be able to get any medical advice until you are actually a registered patient.
- Make a list of your symptoms (in priority order). Be thorough and complete. Note how long you have had these symptoms (include dates), the nature and intensity of the symptoms, and how much they interfere in your lifestyle. What makes them better or worse? Discuss what, if anything, you have done to treat them at home. Have you needed to change your lifestyle or habits, or might these be contributory to your symptoms? Be prepared to discuss these issues in detail. It can be helpful to have this list printed out, with a copy for both you and your HCP to refer to.
- Make a list of questions that you have about your condition, again in priority order. Highlight the 3 or 4 questions that are most important to you.
- It can be very efficient to send the above lists of symptoms and questions to your HCP in advance, and then spend the first few minutes of the appointment deciding with your provider which are most important and need to be addressed first. This way, you are sure to cover your priority list, even if you run out of time and other issues need to be addressed later.
Compile your health record.
- Start with your full name, date of birth, address, phone numbers, and email address. Include the name and phone numbers of your emergency contacts. You may want to add your insurance information, including address and customer service number.
- If you have one or more diagnoses, list them concisely, with the most important (or severe or troublesome) first. You can highlight diagnoses that you especially want to cover in the visit.
- Make a list of medications, including dosage and frequency (how many times per day). Note which meds you take every day, and which are prn (as needed only). For prn meds, note how often you have needed to use them. Let your HCP know if you are skipping doses, or running out of meds for any reason. If you are not taking your meds for financial reasons, you can discuss this with your HCP and seek a less costly alternative. Be sure to include OTC (over-the-counter) meds and supplements, and complementary or alternative therapies. Highlight medications that have been added since the last visit and dosage changes; note medications that have been stopped, when and why.
- Write down your medical history (concisely). Provide a brief synopsis (with dates) of your diagnoses (and how they were made, including any important laboratory tests, imaging studies, and pathology). Include major medical events, surgeries, hospitalizations, immunizations, drug and food allergies. Note any anesthesia or medication reactions. Include any medical directive information, such as code status. Highlight recent diagnoses, abnormal studies or additional information that adds to your diagnosis. Separate this into sections and use bullet points if possible, and try to keep it to no more than a page or two. It is very hard to follow long paragraphs and it will be difficult for your care providers to know what is important if it all runs together.
- Note recent lab tests and evaluations, dates, and results if you know them. You can also bring the HCP a copy of labs, X-rays, etc., that you feel might be useful. It is very helpful to have the copy made beforehand and be able to give it to your provider. If you are bringing your originals, make sure that you get them back!
- You should have a separate file of all of your copies of doctor’s letters, medical records, lab and radiology results, testing and evaluations, arranged either in chronological order or by specialist/test. Bring this along, just in case a piece of information is needed. Again, make sure that your original is returned to you!
- Spend some time compiling a family history. This can be a separate document than the one described above. You will need it for your first appointment with the doctor, but probably not for subsequent appointments. Family histories are extremely important for Mito patients, because it is not uncommon to have multiple family members with the same diagnosis, often with very different presentations and health problems. For your “regular” medical information sheet, it can be helpful to note the family diagnosis and how it was made briefly, with a line for each affected family member, and save the detailed information for the complete family history. Tell your HCP of any major changes or new diagnoses in family members.
- List upcoming doctor’s appointments, and when you are next due to see one of your subspecialists or other HCPs, or to have labs or testing done.
- List your doctors by name, specialty, address, phone and fax number, and email address. You can also list other health care providers, and include pharmacies, state or nursing agencies, DME suppliers, therapists, etc. This information is wonderful if your doctor needs to contact another provider.
- The above information can be extensive and overwhelming. It can be very helpful to send this medical information to the HCP’s office in advance of your first visit.
Be focused and attentive during the visit!
- Have your lists in front of you, with a pen to check off items as they are addressed, and take notes. Mark “action items” that need follow-up or more discussion. Make sure that at least your top priority symptoms and questions are addressed. Advocate for yourself if they are not, in a calm and respectful way.
- Be honest with your HCP about your symptoms, lifestyle and habits. This may raise some difficult questions and even seem embarrassing, but the provider is in a much better position to help you if s/he has complete information. Communicate your fears. Tell the HCP of any religious or cultural beliefs that may affect your treatment plan.
- You may be asked to allow students and doctors-in-training to participate in your appointment for learning purposes. It is okay to say no if the room is too crowded, or you feel uncomfortable. If other people are in the room and you need more privacy, you can ask them to leave briefly during sensitive parts of the conversation.
- It may help to bring along a trusted relative or friend to be an “effective listener.” This person can be designated to listen and take notes so that you can concentrate on speaking with the HCP. Some people ask their providers if they can record the appointment, to be reviewed later.
- If the patient is a child, it may help to bring another adult to take care of the child so that you can concentrate on what the doctor is saying. This way, if the child becomes disruptive, s/he can be consoled or amused, or even leave the room for a stroll in the hallways, so that you are not distracted from the purpose of the appointment. (This may be especially important if it is possible you will need to discuss something that is scary for a child, or scary for you and you want to talk first with the HCP about how to discuss it with your child.) We know and appreciate that families often travel long distances to see Mito doctors and subspecialists, and want to get the most that they can from the appointments. Be very cautious about scheduling complicated appointments for multiple children at the same time, especially if only one adult can attend. Kathy Rivers has a story involving her own family about how this turned out to be a recipe for disaster.
- Set the tone early on – how much or how little do you want to know about your disorder? Do you want just the headlines, or do you want the fine print? Tell the HCP if and when you reach information overload, and can’t absorb any more during the visit. If this happens, don’t walk out without scheduling some kind of follow up, either by phone or another appointment, and ask for written materials.
- Discuss and agree upon an action plan for your diagnostic workup or treatment. Your HCP will have opinions about the best course of action, but should also give you options. Make sure that you understand the goals, what would be the benefit to you of
having the tests done or undergoing the treatment, and what the risks and possible side effects are. Negotiate difficult decisions. You are a partner in your health care management. If you are not comfortable making a decision on the spot, ask the HCP for time to think it over, then schedule follow up by phone or appointment to discuss the decision and where to go from there.
- Ask questions, and make sure that you understand the answers. If you don’t, ask again, or ask that the issue be explained in another way. If your time is up, and you still have questions, ask if the appointment can be extended. If not, can an additional appointment be set up? It never hurts to ask if another staff member can address the questions (such as the nurse, genetics counselor or social worker). Remember that these team members are trained for exactly this purpose.
- Before the appointment is over, briefly repeat back to the HCP what was discussed and decided upon, to make sure that your notes are accurate. Repeat instructions to ensure that you understand them and that they make sense to you.
- How and when should you come back for follow-up? Make the arrangements before you leave the clinic, if possible. Make sure that you have any prescriptions, lab slips or test requests that you need. Ask when and how you will get the results – by phone, or at the next appointment? Find out what events would make the HCP want you to get back in touch with him or her before your next appointment. Ask if there are any written materials or Internet resources that would help you learn more about your disorder at home.
- Remember to say thank you. Be appreciative for the positive aspects of your treatment and partnership. The HCP works hard, and should have your best interests in mind; be grateful for the time and energy spent on your medical care. If the appointment does not meet your needs or if you are dissatisfied with the outcome, let the provider know this in a calm and respectful way. Perhaps there are other options and the situation can be remedied.
- Keep an open mind during the appointment (before and after, too!). You want to develop a partnership with your HCP, based on mutual respect and with the goal of optimizing your health. Advocate for yourself by speaking up (in a calm and polite way) if you disagree with the provider’s interpretation of your symptoms. Be assertive, but always respectful. Remember to pick and choose your battles. Don’t burn your bridges behind you. Be nice. Remember that the office staff is probably just as frustrated with the complexities of both mitochondrial disease and our health care system as you are. Stay calm, and remember that health care providers are human and dealing not only with your issues, but with those of multiple other patients and their own as well. Be patient and understanding. Long wait times and uncomfortable tests and treatments are an upsetting but often unavoidable part of the journey toward a diagnosis and better health. Keep your mind on the goal!
What is the best way to reach your health care provider before or after the appointment?
- It is good to contact the HCP after the visit if you have questions. It is very helpful to know the best way to do so.
- What is the doctor’s contact information? Should you phone, and leave a message at the front desk, or ask for the doctor’s voice mail? Some doctors will do email, and some have reasons that they will not or cannot; some will use email for limited purposes only.
- Should you speak with a nurse or office manager, who will relay your message to the doctor, or can perhaps handle the issue? Some doctors work as a team with highly trained and skilled nurses or genetic counselors or therapists who might be better able to answer your question. If your question is about sending records, you probably want to talk to an office manager instead of a health care provider.
- If used in the office, email can be a wonderful way to relay information and ask questions. You may be able to email with the doctor (or therapist, or dentist or other health care provider) or with a nurse or genetic counselor or other member of the team. You can provide some concise background, as well as your contact information. Do not email with emergency questions, or if you need quick turnaround on your answer. Do email for brief updates about an ongoing condition, to share information from another HCP, or to ask whether a non-urgent appointment should be made. If you do not get a response within the time that you need it, call the office. Remember, some doctors do not use email for communication, and this needs to be respected.
- Some doctors will only speak with you if you make another appointment. You need to know this ahead of time, and plan accordingly.
- What about weekend and holiday coverage? What about emergencies? You should know how to contact the doctor in case of emergency; better yet, have a plan to put into action during an emergency while you are contacting the doctor. If you are truly in crisis, it is better to act to obtain care (call 911, be seen in the ER) while you await the return call than to wait too long at home for the doctor to call back. The medical information sheets that you made for the appointment are wonderful for ER visits. Keep a copy with you at all times, just in case. Some doctors will provide you with an ER protocol letter, so that the emergency staff who are not familiar with you or with mitochondrial disease can have a plan of action. There is a sample protocol letter in the “MITOFIRST” handbook; you would need to customize this for your individual needs.
You need to follow through after your visit!
- Do what the health care provider asked you to do fully and completely. Get the prescriptions filled, take the medicines, obtain the lab tests and evaluations, and make the recommended doctor and therapy appointments. Try to do the hard stuff – rest more, eat better, exercise. Life is busy, and it is easy to let some of this slide, but this is your role in the team effort for your disease management. If you tried but cannot do what you and the HCP agreed on – if you cannot do the exercises the therapist recommended, or the diet the nutritionist recommended – or if on reflection you decided it is not right for you, let the HCPs know. And especially if a treatment is not working and you are getting worse or have intolerable side effects, let the doctor know as soon as possible.
- Make and keep your follow up appointment! Go with your instincts. If you have found a HCP who will listen to you and work with you, stay with him or her! If the “fit” with the provider was not right, find another one (if possible), or do your utmost to have the best relationship you can with the one that you have.
- Obtain copies of, read and try to understand as much as you can of your medical records. If you have questions, contact the HCP for clarification.
- Educate yourself about your condition.
Coordination of care is a beautiful thing!
- Care coordination is an optimal way to help you manage your illness, but often very difficult to find. Care coordination in the U.S. is supposed to be done by the primary care physician (PCP), but by default, this usually becomes the responsibility of the patient or the parent/caregiver.
- Patients with mitochondrial disease usually have a PCP, often an internist or pediatrician. This person should be local, available, and optimally accepted by your insurance plan. S/he should know the local resources and be able to help you with emergency care. Your PCP should be willing to listen to you and work with you, and should learn with you over time how to manage your Mito disease. S/he needs to be willing to communicate with and work with your Mito specialist, as well as with your other subspecialists. Some Mito specialists will insist that you MUST have a PCP to keep you safe.
- Patients should also have a Mito disease specialist. This person may not be local, but it helps if the office is as convenient as possible. The Mito doc is usually a metabolic doctor, geneticist or neurologist. S/he will know a lot about Mito, and will be your expert resource in making a diagnosis and managing your illness. The Mito doc will usually work with you to develop a treatment plan, which you and your other HCPs will follow. You may have more than one Mito specialist; if you do, make certain they are working together. Also, a local Mito specialist who is responsive and available to you and your PCP may be more effective than going to the “best” Mito specialist in the country. Find out if your local Mito specialist interacts with others around the country and is comfortable when you bring questions.
- Mito commonly affects multiple organ systems, and every affected organ system equals a different subspecialist. Patients may have a cardiologist, GI doctor, neurologist, pulmonologist and many more in addition to the PCP and the Mito doc. Getting to all these appointments, and communicating the results and each separate treatment plan can be overwhelming and confusing. Care coordination is needed to keep all the details straight, make sure that the lines of communication are open and that everything that happens is in the patient’s best interest.
- How can you do all this, and still have a life?
- You may be able to obtain case management through your insurance company. The case manager can help you access care and services, and coordinate the insurance minutiae that can eat up so much of your time and energy.
- You may be able to access case management through state-run programs, such as the Medicaid Model Waiver program.
- Your PCP and/or your Mito doc may be able to help you with care coordination. It is very helpful to identify a “contact person” at each office (and the subspecialists’ office as well). This person can be called for quick access to the doctor’s ear, and should be nurtured and warmly thanked and appreciated. This is another reason to make certain you have a good relationship with the nurse in your PCP’s office and the nurse or genetic counselor in the office of your Mito specialist. They are very good at “triage” and helpful for care coordination.
- Your doctors may be amenable to the use of an email list specifically for you or your child. This can be an excellent way to ensure that all interested parties are aware of changes to a patient’s treatment plan or status, but is no substitute for direct contact in case of emergency. To set an email list up, ask each of your doctors (including all the subspecialists) if they would be willing to be a member of the list, stressing that receiving the email would not constitute responsibility for provision of emergency care (unless the doctor wants to and contacts you back). Ask the doctor which email address to use. You may also add other HCPs, nursing agencies, teachers, etc. if appropriate. Use this list for matters of notification, such as lab results, med changes or status changes. If a doctor wants to reply and hits “reply all,” their comments will be made known to the whole group. No HCP is obligated to reply unless they want to and have something to add. You are responsible for contacting the doctors directly if you have more urgent questions and need answers soon, or if you need to notify a doctor who is not on the list. There is a paper trail for all of this, which can go in the chart.
Example: Emily, a complicated child managed at home, is on increased steroids, oxygen and bronchodilators for wheezing and respiratory distress. Her PCP has done a chest X- ray, which is fine, but her potassium was found to be low. Her PCP and mom have talked about increasing the potassium. Her renal doc chimes in with a recommendation for increasing her daily potassium medication, and asks that the lab be repeated in 1 week. Her geneticist asks if some additional genetic testing can be done at the same time. Her pulmonary doc wants a call in 3 days and another X-ray if her oxygen needs haven’t improved. Her cardiologist wants mom to keep an eye on her heart rate, and switch to a different bronchodilator if the heart rate is elevated. Mom emails the group with updates as Emily improves and returns to baseline.
- You (the patient or parent/caregiver) will likely be responsible for much of the burden of ensuring that all this communication and care coordination occurs. Since you are the only one who has been there since the beginning and for every step of the journey, this is appropriate. If you can obtain help, accept it! If you are overwhelmed and need to deal with non-urgent issues and appointments later, do so. They won’t go away, but when you have rested and recovered some energy you will have more stamina to handle these matters. It is usually not necessary to do everything at once – prioritize, and do the most important things first. (You may even need to prioritize family members, and attend to the sickest or most needy one first.) Learn to compartmentalize. Spend some of your day dealing with managing your disease, and some fulfilling all the other roles of your life, which are also important and necessary!