Ever been there? I have!
You go with a loved one to a visit that could include a diagnosis of cancer or other serious medical disease or condition. You realize it is stressful, but you may not realize how important your role is. The minute the patient hears the “C word” or something similar, the rush of emotion may cause them to hear nothing else. You just became their eyes and ears. Those who take on this role can benefit from some basic preparation before the appointment.
#1: The importance of preparation
Take time to prepare for potential bad news. Let your loved one know you’ve got their back. Ask if they want you to come with a list of questions or if they have specific questions they want you to ask on their behalf. They may want you take an active role or simply be there for moral support. Respect their wishes.
It also helps to have an idea of how the conversation will likely unfold. Medical professionals are generally instructed to provide this news using a specific model: the acronyms SPIKES and PEWTER are two common examples. The SPIKES (Setting, Perception, Invitation/information, Knowledge, Empathy, and Summarize/strategize) model begins with finding a quiet location to discuss the diagnosis. The medical professional would then gauge the patient’s perception of the situation, what they already know before providing the diagnosis, and determine the type of information the patient and their family may need to better understand the diagnosis and their options. This is generally done in plain language to help the patient understand the information needed to take the next step. This model encourages the use of empathy, acknowledging the patient’s emotional response before moving on with a discussion of treatment options.
The PEWTER (Prepare, Evaluate, Warning, Telling, Emotional response, Regrouping preparation) model focuses on the medical professional using everyday language to discuss the diagnosis with the patient. The medical professional will get a sense of what the patient may already know before moving forward. The next step is warning. This warning often includes a brief pause. The purpose of this pause is to give the patient time to prepare themselves for the conversation. This method focuses on providing the diagnosis in small pieces of information and making sure the patient understands each portion before moving forward. The final portion, regrouping preparation, focuses on hope — the hope that comes with potential treatment options.
With this conversational flow in mind, the following checklist can help summarize important steps to prepare for the appointment:
- Put together a list of all medications and dietary supplements.
- Write out any questions.
- Be there primarily to listen. Only ask the questions on the list if the patient has forgotten.
It is also important to have a way to record the information for future reference, which leads into the next tip.
#2: Active listening and the need for notes
This appointment will be emotional. People express their emotions in different ways. Some will be clear in their response, while others may become quiet. In either situation, the patient may no longer fully take in the information given by the medical professional. You can help by taking notes. Include the exact diagnosis and treatment options, as well as doctor recommendations and a list of any available community resources.
The medical professional may also have prepared resources to share. Make sure your loved one gets a copy of this information.
#3: Be prepared to be along for the long haul
Providing the patient with an ongoing, consistent support person who has been to prior visits and knows the questions they seek answers to is critical to allowing them to process what they are experiencing. Be ready for their tough post-visit questions and be prepared to provide accurate answers. Most importantly, respect their desire for who they want to know what about their condition and their treatment. Remember, it is their story to tell, unless they ask that you be the one to tell others what they find difficult to discuss.