Go With Them
When cast in a patient role, we are all somewhat discombobulated. Our normal faculties become compromised in unpredictable ways. The foreign medical environment is disconcerting to everyone, often compelling them to surrender much of their time and autonomy. This is when an attentive caregiver/team member who goes along to appointments can run interference by reporting symptoms, representing needs, taking notes, gathering information, keeping the calendar, managing the schedule and listening, listening, listening. Later they can be an invaluable source of facts and perspective for both the patient and family.
I encourage patients and caregivers to be assertive with the medical community: Ask lots of questions and hard questions. Press through for the hard answers. Press past the change- of- subject- sidesteps some physicians use on the hard issues. Press until you get an answer, or an "I don't know.” Then ask, "When will we know?” and “Will we ever know?" or “Who else should I ask?”Take a tape recorder with you and just turn it on at the beginning of the visit. Many patients do this because the doctor’s office is often a stress induced brain-dead zone.
Working memory is what we use to manipulate new information so it can be integrated with remote memory. The average individual can only juggle 6 – 10 new bits of information before adding another will cause one to drop off. In my experience this number decreases with stress, foreignness of the information, age, and pain medications.
As cancer information is all new, it will be displaced rapidly. Emotionally charged information displaces information that is already on the bench even faster. If data is not understood, categorized and integrated, it is not transformed into long-term memory. Instead, it is lost. When needed for decision making 12 – 15 bits later, you are out of luck. Caregivers can collect their own 10 bits and hang on to them better when they are less emotionally involved, but a tape recorder gets it all.
The recorder can be particularly valuable to playback for absent family members who may have a role in decision-making or simply need to be accurately informed. When I have spoken to family about what they have been told by the patient regarding our office visit, I have been astonished at how little of what I have said made it home accurately - or at all.
This can be critical when it applies to how to take medications. A recording can supplement a written record. It is a good idea to keep a small ring binder with two sections, the first for recording home data and the second for physician/office/hospital data. It that can travel to each appointment with the patient and be passed from teammate to teammate to serially record specific physician instructions.
If the caregiver takes the notes it lets the patient focus on what the doctor saying. Then the binder can be used at home as a log for recording side effects and symptoms, questions for the next visit, the use of pain medications and their efficacy over time. All of these are often forgotten by the time the next physician’s appointment rolls around.
The caregivers can also post their patient's status and key bits of data on www.caringbridge.org to keep family and friends up to date and to save the patient from having to repeat and explain the same information repeatedly - which may be exhausting and plunge them back in the misery of constantly revisiting their disease state.