Ask a “family scribe” to capture details of discussions with your cancer doctor.
When you’re diagnosed with cancer, it’s understandably a scary time. The initial visits with your oncologist can be especially intimidating, as you learn the details of your illness and start making decisions about treatment. It’s a good idea to bring a family member or close friend with you to doctor appointments, not only for moral support but also to take notes.
“Appointing a family scribe — someone to write down important information during your doctor’s visits — is very helpful,” said Allison Schaffer, a licensed clinical social worker who serves ad manager of patient and family-centered care at Vanderbilt-Ingram Cancer Center. “Especially in the days and weeks following the news of a cancer diagnosis, you’re probably feeling many strong mixed emotions: fear, stress, anger, disbelief and more. In this state of mind, it can be challenging to take in new information. Many people hear the word ‘cancer’ and have trouble focusing on any more of the conversation.”
Ask someone you trust — and who is calm — to be your scribe, recommends Schaffer. That way you’ll have a record of the conversations later, in case you miss something or need to review it to understand it better. It also helps to compare your impression of the conversation with that designated person, or the notes, to gain perspective.
1. Come up with a plan for capturing medical conversations.
Having a designated notebook for notes on hand is always a good idea. But other options include making audio or video recordings of the appointment. In a pinch, if no family members can accompany you in person, you may be able to use your phone’s video calling feature to let someone participate from another location. That person can send you written notes following the visit.
If you want to record the conversation, however, it is very important that you ask the doctor’s permission first. “Some healthcare providers might be limited by their institutions’ policies” about recorded appointments, Schaffer said.
2. Be clear about what you need.
“It’s also important, if you’re going to have someone come along to the appointment, to talk about roles and expectations before the visit starts,” Schaffer said. Make sure your scribe understands you want them to take notes, not just tag along for moral support. Also, let that person know what role to play during the conversation — and that you’re looking for reassurance that important details are not being missed.
“Clarity is the foundation of confidence,” Schaffer said.
Warn your scribe about how well you usually handle these visits, especially if you tend to get upset but don’t want them to abandon taking notes to offer you comfort. If this is the case, Schaffer suggests telling your scribe in advance: “I get emotional during the visits. That’s my norm, so I want you to be there to take notes and ask questions and just let me have my reaction.”
3. Work around hearing loss.
If you experience hearing loss — or if a family member does — ask your healthcare team for help in assuring that you get all the information. Again, an audio or video recording of the appointment, if possible, can help you review it again later to be sure you catch everything. Having the doctor or her staff give you written educational material about illnesses, treatments, medications and more is also helpful.
4. Stay organized.
Keep your information organized by using just one notebook or binder for all your medical appointments. If several people take turns being your scribe, ask them all to use the shared notebook. Or put their separate notes into a single binder. That way there’s one written family record of every appointment, valuable help as treatment continues over time. There might be information you later want to review: medications, diet, appointments, etc.
5. Gather contacts.
The scribe should make sure to write down the name and contact information of the person on your medical team who will serve as your main point of contact. Is it the doctor? A nurse? A patient navigator? Get that person’s name and how to reach him or her with questions or problems. What’s the direct phone number or email to use? For Vanderbilt patients, this will most likely be the My Health at Vanderbilt online portal.
6. Set expectations.
Let the doctor know in advance when you anticipate having lots of questions. “When you have a set amount of time — say 15 minutes, 20 minutes — to see a provider, they’re not always prepared to answer all those questions,” Schaffer said.
If you know you’ll need to have a long conversation at your next appointment, let the medical team know. Sending questions in advance is especially helpful. The doctor may be able to answer them through the portal, saving time during your visit. Or she may need to set aside more time for a longer conversation when you meet.
