As illnesses become more serious, it is important to have clear communications with your doctors. Our tips for talking with your doctors about serious illness and care options include practical things to do and think about before, during, and after your appointments.
Everyone — doctors, patients, and caregivers — can get frustrated by the healthcare system. It is easy to walk into a medical appointment already frustrated and angry. It is easy, but not really useful. Try to deal with your emotions before or after if possible. Your doctors can’t necessarily change the healthcare system and are only one part of your overall support team, which includes other healthcare providers but also friends and family.
Making the Most of Your Doctor’s Visit
Before the appointment:
- Make a list of all the medications you are taking, including supplements and over the counter meds.
- If you are seeing a new doctor, make a summary of your medical history—surgeries, major illnesses and conditions like diabetes or allergies. Bring a paper copy with you so it can be put in your medical record.
- Find out how long the appointment is.
- The number of things you can cover will depend on the amount of time you have.
- If you have a long list, make a second appointment or ask ahead of time for a longer appointment.
- Organize your thoughts and write them down.
- What is bothering you most?
- What do you hope to learn or understand?
- Review The Conversation Project’s Guide for Talking with a Health Care Team and Guide to Serious Illness Conversations to help organize more of your thoughts.
- If you do internet research be mindful of visiting trustworthy sites such as WebMD or Mayo Clinic.
- Summarize a few important points you have learned if you think it will be helpful.
- Don’t arrive with a stack of papers expecting that your doctor can read them during the appointment.
- If possible, take someone with you to:
- Take notes or record the session.
- Prompt you if you have forgotten to mention something important to you.
- Speak for you if you are having trouble speaking for yourself.
- Let the office know if you will need an interpreter.
- Bring your insurance cards and any contact information you want the doctor to have.
During the appointment:
- Talk about the most important things first.
- Repeat back to the doctor what you heard and ask if you understood correctly.
- Write down any new information
- Towards the end of the appointment, ask what is going to happen next.
- Will the doctor be writing a prescription?
- Are you supposed to make another appointment? When? With whom?
- Are there tests you need to schedule? When?
- What are the side effects of recommended drugs or treatments?
- How will you know that you are getting better, that the treatment is working? How long should you expect that will take?
After the appointment:
- Review the information you wrote down and try to answer any questions you may have.
- Fill prescriptions and make any necessary follow-up appointments.
- Let your doctor know if you are having problems.
What are reasonable expectations when talking with a doctor?
- To be listened to and treated with respect and courtesy
- To be spoken with in language you understand
- To be treated as an individual, not as a representative of a gender, race, or culture
What are a doctor’s reasonable expectations of you?
- That you will treat them with respect and courtesy
- That you will be honest
- That you will ask questions about things you do not understand
- That you will follow through on what you have agreed to, or inform them if you are not
When seeing so many doctors, how do you keep track of everything?
For most of your experience, your primary care physician or “family doctor” was your main connection to the healthcare system. You may now be seeing many doctors, each focused on one part of you or one condition and they may or may not be talking with one another.
Sometimes navigators or advocates are available to help you but often it is left to the patient and their caregivers to keep track of everything.
To make the communication easier:
- Write down all your diagnoses and medications. Share digitally or on paper with each doctor.
- Find out from each doctor what tests they want to see. When scheduling tests, say where you want the results sent. Ask for your own copy of test results.
- All your medical records and test results are yours; you can have copies if your request them
- If all your doctors are part of the same system, see if you can schedule appointments all on the same day
Communications issues to consider as end of life nears
A patient’s last years, months or days can be extremely stressful and uncertain. It would be helpful if it were possible to predict exactly what will happen when. However, no one, not even doctors, can forecast exactly how long someone will live, so they often don’t want to answer the question, “How long do I have?” Or “How long will they live?”
One useful approach is to ask something like, “Would you be surprised if (name) died in six months?” By framing the question of life expectancy differently, the question becomes easier to answer.
Asking how much longer someone has to live is delicate. Some people can acknowledge that they or someone they care for is dying, while others feel that acknowledging even the possibility of death is giving up or losing hope.
Doctors are people too. Sometimes it is difficult for them to accept that they can do no more, so they may want to accentuate the positive, however uncertain it may be. That may be exactly what some patients, caregivers, and inner circles want. Others may prefer that communications be more direct and balanced so that both possibilities but also probabilities are presented.
If you are not getting the information you want and need from your doctor, ask them directly what you want to know (“Am I dying?” “Would you be surprised if Dad died in the next two months?”) but try to understand that predicting mortality is not an exact science.
