A few years after marrying the love of my life, Desiree, she was unfortunately diagnosed with a very aggressive form of breast cancer. When I asked her how I could help, she asked me to take full control of her medical journey. Her unique decision was based on her being in medical school at the time. She told me, “Robert, I know enough to be dangerous to myself, and I only want to focus on managing my disease as best as I can. Will you be my point person?” Of course, I said yes and that started my journey of being the buffer between her and her doctors.
She actively directed her care and laid out how she wanted to confront her disease but asked me to talk with her doctors. I know it sounds very unusual, but it was one of the many things that allowed her (and allowed us) to live around her disease and still live a joy-filled life until her passing 11 years after first being diagnosed.
Shortly after embarking on this journey, I realized that the relationship between us and her doctors was more transactional than relational. Soon after my wife was diagnosed, I was thrown into a world completely foreign to me. The language was different; the rhythm was different. To be honest, I realized caregiving is akin to performing a job without any training where the job function changes daily and emotions rule the show. The word impotent comes to mind, but, in reality, I realized that perception came from my not using my own voice.
Our voice is one of our greatest tools for any illness journey. Unfortunately, fear usually overrides our need to ask about or openly discuss issues. When a patient puts on a medical gown, the common outcome is they lose their identity. The common thought is “doctor fix me,” but the real communication has to be “doctor see me, hear me, value me.” Imagine what a caregiver must feel if the patient themselves loses their identity.
I first felt that I needed to walk on eggshells when asking questions or for clarification. I was afraid I would annoy the doctor or take up too much of their time. It was when I realized that my questions came from my love for my wife and my wanting to do my best that I started to exercise my voice. I wanted to do my best, and that required me to feel comfortable. It is the doctor, not the internet, who had the ability to help me.
How to Talk to Doctors
Whether it is to speak on behalf of our loved one or ask questions for our own piece of mind, here’s what I learned about communicating effectively, either in person or virtually, with doctors:
- Realize that there are no irrelevant questions, and our questions should never be ignored. If they are ignored, that doctor is not the right doctor. Think of it as a natural selection process. As I mentioned above, we can create a God complex around doctors. As a result, we fear upsetting them or taking their time. Yet, it has been proven that the more comfortable the caregiver is about their role, the better they can support their loved one. This, in turn, results in better overall outcomes. This is a big tenant of palliative care. Palliative care considers the unit, not just the patient. It provides support to both the patient as well as the family.
- Don’t minimize what you want to ask. We have a tendency to feel time pressured and may try to edit or summarize questions in order to be efficient. Many times, this creates a situation of not getting the information we need and leaving an appointment feeling more confused. Do not minimize any question or concern, and make sure to ask specific questions.
- If you do not understand, say so. It is common to feel intimidated in a medical setting, but remember you are asking because of the love you feel for your loved one. Don’t allow fear to prevent you from protecting and caring for that person. Ask the doctor to rephrase their response if you do not understand. Remember, they are there to help you.
- Be open. Tell the doctor from the get-go that you need them to be your ally and will have to rely on them. Make sure they will be there for you from your first meeting. If you feel hesitation from the doctor, they are not the right fit. Have a conversation with your loved one, and choose a doctor together.
- While it might seem obvious, make a list of questions before you go. The majority of people forget what they wanted to ask as soon as they enter a doctor’s office. Go in prepared. It is also your right to ask any question, including if you can record the appointment. Again, if the doctor says no, that’s your cue to move on and find someone who is better suited.
There may be multiple reasons why you want to chat with your loved one’s doctor, and every single reason is valid. Unfortunately, as a caregiver, we can’t fix those we love and are caring for, but we can make sure we have all the information possible to support our loved ones to the best of our ability.