As a patient advocate, I have had the opportunity to meet hundreds of lung cancer patients/survivors. Occasionally, I see patients who I believe are not receiving good medical care. That is not to say that the patient’s medical team is incompetent. Sometimes the patient lacks the wherewithal to advocate for themselves. They may believe that their suffering is a normal part of the lung cancer journey. In truth, there is suffering for everyone diagnosed with lung cancer. But when is the suffering too much or unnecessary?
Balancing Being a Friend and an Advocate
I care about my lung cancer friends and want them to receive the best care possible. As with all relationships, there must be mutual respect. I must respect the patient’s choice of their medical team. Therefore, raising my concern with them can be a very delicate tightrope walk. I risk not only alienating our friendship—worse—I may be instilling fear, distrust, and uncertainty in the patient about their medical team.
The more lung cancer patients are around other lung cancer patients, the more likely they are to recognize when their own suffering or symptoms are severe enough to call the doctor—or even go to the hospital. That is one reason why I encourage patients to join a lung cancer group. One that meets in person is best, but they are not in every community. The next best thing is connecting online.
Not every patient knows how to advocate for themselves. But every patient needs an advocate.
Recently, I visited a lung cancer friend of mine who has been suffering a lot. She was in a great deal of pain. The only way she could get any comfort whatsoever was by lying on her left side. The simple act of going to the bathroom was a major struggle. Compounding the problem, my friend lives alone so she has no one to help her on a daily basis.
I asked if I could stop by to bring her some homemade soup. She was in too much pain for visiting, but she said yes to the soup. After dropping the soup off and praying together, she told me she had an appointment with her oncologist the next day. Before I left, I told her, “This is not normal. You do not have to suffer like this. Talk to your doctor tomorrow and ask him for help.”
Many lung cancer patients silently endure pain. Unfortunately, they may not even tell their doctor. This is one reason to take a family member or friend with you to doctor appointments. They will ask questions and also help answer the doctor’s questions. They can also help the patient recall exactly what the doctor said later on (see recent articles on chemo brain).
Ways to Advocate for Yourself and Those Around You
If you are in treatment and you usually go to the doctor alone, consider asking a friend or family member to accompany you. If you must go alone, be prepared for a frank discussion with your care team. Prepare by bringing your written questions, symptoms and concerns to discuss with the care team.
If you are a friend or family member who is concerned about your loved one’s care, be careful not to be too critical of their medical team or the patient may feel pressure to choose between your relationship and the one with their doctor. However, if your loved one already seems to have concerns about their care, encourage them to simply seek a second opinion. Assure your loved one that your concern is for them and let them know you want nothing to damage your relationship.
I was encouraged when my friend sent me a text after her appointment. She said she wanted to be seen at another cancer center. My prayers for her are that she has peace with her care team and that she receives the excellent care she deserves.