Patients and their medical team form a tight bond as they work to beat lung cancer together. However, communication isn’t always perfect.
LUNGevity Foundation spoke to Lecia Sequist, MD, and nurse practitioner Elizabeth Krueger, MSN, at Massachusetts General Hospital to find tips for improving communications with your medical team.
1. Understand that many specialists will play a role in your treatment
A medical team with a history of treating lung cancer often has behind-the-scenes approaches to keeping track of their patients’ progress. Because of this, it is possible that you may not see your oncologist at each medical appointment. If that is the case, don’t panic. The oncologist will still be monitoring your situation.
For example, Dr. Sequist and Ms. Krueger work together to treat patients in their lung cancer-focused medical practice. For routine visits, their patients alternate between seeing the nurse practitioner during one visit and the oncologist during the next. “Our patients know that we are a united front,” notes Ms. Krueger. “Dr. Sequist and I make sure that we know which patients are coming in each day and that we discuss our plans for the patient. Then, after the appointment, we routinely update one another.”
Whether you are meeting with your nurse practitioner, your oncologist, or another member of your medical team, the conversation should feel ongoing. The team should communicate about your progress and discuss next steps regularly. If there is a big decision to be made in your treatment, such as changing therapies or enrolling in a clinical trial, multiple members of your medical team may come together to help make the best decision possible.
2. Bring a friend or caregiver to key appointments
While it may be difficult to find someone to accompany you to every medical appointment, try to have someone join you for key appointments in which you will be learning new information from your medical team.
“For our practice, when there is something new to discuss, such as a change in treatment, the in-person office visit is often the main 'teaching session' for us to explain things and answer any questions. Then we try to send the patient home with some written material, maybe a brochure, as a reminder of what we discussed,” says Dr. Sequist.
However, the volume of information and the level of detail discussed with a patient depend on many factors. A good medical team assesses their patient’s mental and emotional state to determine how much information should be supplied. They also monitor the patient’s ability to understand what is being discussed and they make a conscious effort not to overwhelm the patient.
“If the patient is alone, I might write down the key points to help them retain the information. But having someone else with the patient take notes and ask questions is very helpful, and it allows the medical team to communicate information even more effectively,” notes Ms. Krueger.
3. The Internet is wrong sometimes
Your medical team will be glad to have you take an active interest in your treatment process. “There are some gray areas when it comes to treating patients, so it is great when patients feel empowered and they learn about their situations. There are many excellent and reputable resources available online, and patients can benefit from making use of them,” says Dr. Sequist.
Here, the key word is reputable. Because the Internet is a quagmire of advertisements and unsubstantiated memes mixed with well-researched scientific findings, we have to be careful about which websites we trust. To help with your search, LUNGevity is providing a list of some reputable online resources at the end of this blog article.
We also have to be wary of extreme anecdotes that often get published online. For example, one person may claim to have cured cancer using a simple home remedy, while someone else may claim a routine medical procedure ruined his life. We cannot be sure of the authenticity of these claims until they have been verified scientifically.
If you do stumble onto something about lung cancer on the Internet that makes you feel worried, excited, or just curious, it is important to discuss your online research with your medical team. And it is equally important to trust your team’s reaction. If they are interested and want to review the article themselves – that is great! But if they say that the article is not applicable to your situation, it is important to trust their opinion. If you don’t trust their opinion, it may be a signal to consider changing doctors or to get a second opinion about your treatment plan.
4. Speak up about problems or concerns
Your medical team evaluates you at each appointment on multiple fronts. They are likely to make assessments about your mental, emotional. and, of course, your physical health through conversations, test results, and observations.
“If a patient was very quiet and didn’t ask any questions at all, I would consider it a warning that the patient could be feeling depressed or overwhelmed,” says Dr. Sequist. “It is not uncommon. That is why we work closely with a social worker to help patients manage these types of issues.”
A strong medical team cares about your overall well-being and they have resources available to help with a variety of situations such as financial assistance, psychological counseling, and emotional support. So, if something is bothering you, talk to them and let them try to help you.
5. Categorize your concerns
Your medical team cares about your phone and email messages and wants to address them as soon as possible, but they also see many patients and cannot treat all messages with the same level of urgency. At times this can cause some patients to feel frustrated because their medical team doesn’t respond immediately. Other times, patients may feel like they are forced to pester the medical team to get a response.
These are common complaints that medical practices are working to resolve. One successful solution has been to offer several ways to contact the medical team so that messages can be addressed according to their level of urgency.
“Sometimes our patients have something they don’t want to forget to mention during their upcoming appointment. That is a perfect example of a time to just send an email. This information is important, but it doesn’t require an urgent phone call,” explains Ms. Krueger.
During your next visit, consider speaking to your medical team about different types of issues and how to best address each one. You might ask: What kinds of situations would warrant a phone call versus simply waiting for my next appointment?
In general, you can expect your medical team to stay up to date on your progress, to be open to discussions, to answer questions, and to care for your emotional, mental, and physical health. In return, you can optimize your communication with your medical team by treating them, their time, and their expertise with respect.
Five reputable sites for learning more about lung cancer
1. Centers for Disease Control and Prevention: www.cdc.gov/cancer/lung
2. National Institutes of Health: www.cancer.gov/types/lung
3. National Comprehensive Cancer Network: www.nccn.org
4. LUNGevity Foundation: www.LUNGevity.org/for-patients-caregivers
Juhi Kunde, MA, is a science writer for LUNGevity.