How to Talk to Patients as a Volunteer?

Before I became a volunteer to help lung cancer patients, I’ve spent several months in advocacy on Facebook. I was inspired by the patients and caregivers that I wanted to share the inspiration with other patients.

Completing the advocate volunteer training

When I was training as a volunteer, I was a bit surprised that our instructors emphasized that we shouldn’t talk much but just listen. We should simply answer “yes”, “Mhm…”, “well…”, “I hear you…”. The demonstration tapes of volunteer and patient conversations were so gloomy and depressing. My first reaction was that we, the cancer patients, want more from the volunteers than just as tools to let patients vent. Patients want to ask questions from volunteers with similar experiences. When I brought up these concerns, my instructors insisted that the volunteers’ role was to mainly listen. Even the instructors doubted whether I was suitable to be a volunteer given my comments to them. Deep in my mind, however, I wanted to see what a patient-volunteer interaction was really like.

I completed my training with success, and since then, I talked to 12 newly diagnosed lung cancer patients*. Among them, 3 were Caucasians and 9 were Asian descents.

Eager to know the lung cancer basics

I found with Asian patients the passive responses like “Mhm”, “I see…” were not helpful. The patients were eager to know: what was going on with their lung cancer? Were we alone? We were not smokers, how could we get lung cancer? Was it normal to have lung cancer so young? How should the treatment go? What’s biomarker testing? Could we continue to work?

I always tell them my own experience and also my knowledge I acquired so far about lung cancer, which formed an important part of the conversations. I found that hearing from patients, like me, were somewhat more comforting for new patients.

Let's address how the system has failed us

My experience working with Caucasian patients was different. One of the patients was an exact textbook case, even the tone of asking questions was the same. The other two were very vocal, complaining about the lack of information from doctors and nurses. This was quite different from the Asian patients I spoke to. Asian patients were more focused on the treatments, testing, and general information about lung cancer, while the Caucasian patients were more focused on how the system failed them. Keeping in mind that this is from my experience with only 3 Caucasian patients.

Be mindful of cultural difference

Given my experience so far, I found a noticeable difference. The cultural difference should, therefore, be considered when developing guidelines. I feel we should do more research on it.

The patients, Asian patients or Caucasian patients, suffer from one problem, that is the lack of medical information. Doctors are busy and cannot explain everything. Although many reliable documents are published online, patients can rarely go through the massive documents given the shock of their newly diagnosed cancer.

What have I learned as a volunteer?

The situation has changed significantly at least for lung cancer patients and treatments. For the last decade, new therapies constantly emerge, and the patients’ prognosis is significantly improved. Consequently, the attitude towards lung cancer has changed dramatically.

I suggest the cultural differences should also be considered. I strongly feel that patients can get useful information from the corresponding online lung cancer groups. I realize that some doctors are against it; but my experience from 3 online lung cancer groups is that for any problems, there is always somebody with a similar experience. With the information the patient receives online, the patients can discuss further with doctors.

I also noticed that the knowledge of the volunteers is absolutely important. It doesn’t mean that the volunteers should answer medical problems, but if a volunteer doesn’t know anything or shouldn’t say anything, it’s difficult to have fruitful discussions. This is, of course, my personal opinion.

It's about encouraging optimism and confidence

I try to inspire and encourage patients on their new journey by not only sharing my experience with lung cancer but also presenting myself with a good mood and high confidence. If I believe we are in good hands with so many therapies, drugs, and good doctors, I can make the patients feel it. I have had many patients who told me that they felt less nervous and more confident about lung cancer after talking to me.

*Note: only a portion of patients were from the organization, the others was helped by me.