By Mary Dominiecki, PhD
Through my professional experience with pharmaceutical brand market research, my own personal experience as a patient with cancer and now cancer survivor, and conversations with other patients in my role as an advocate, I know that patients with cancer are taught that the most important thing in their life is fighting cancer. They go through hours of doctor visits—with their medical oncologists, radiation oncologists, surgeons (sometimes multiple surgeons), and other specialists (cardiologists, pulmonologists, gyn oncs). They sit in waiting room after waiting room feeling alone and worried about the toll that treatment takes on them. They spend hours in infusion chairs and on the phone trying to coordinate tests and appointments. They experience many inconveniences and side effects, which they may complain about to a nurse or family member or friend, but often they do not voice these complaints to their oncologist.
Why do patients hold back? Often, the reason is fear. They are afraid that if they complain too much about a side effect, they may be taken off the medication that is providing them with hope for their future. They are afraid of being labeled as a “difficult” patient, believing they might not get the most efficacious treatment or the most compassionate care. They do not want to be perceived as having their priorities out of whack since they are taught that survival at (almost) all costs is the goal. They are taught that side effects and inconveniences are necessary evils that are temporary, so they feel there’s no point in complaining about them.
I’m not saying that patients never report serious side effects to their health care team—of course they do. But do they tell their oncologist how the treatment is really affecting them?
- Do they say that they are so fatigued that they do not go out with friends?
- Do they explain that they are so self-conscious that someone might notice that they have lost all their body hair and identify them as a cancer patient that instead they choose to stay home?
- Do they talk about how challenging the peripheral neuropathy is for their daily activities? Or how they are afraid to leave the house because of diarrhea?
- Do they state that they live in fear that their nails are going to fall out, or that they worry about every ache and pain and what it might mean to them?
- Do they give voice to the thoughts and fears that keep them awake at night? Has their cancer returned? Has it progressed? Is it growing?
- Do they share that while the decrease in frequency of appointments and duration of time between appointments should be a sign of progress and distance from their original diagnosis, it actually induces even more anxiety? Anxiety that something may be missed, anxiety around tests and scans.
No. Not always.
Patients keep so many things to themselves. Everything around them tells them they are in a battle that only the strong survive. Therefore, they are afraid to show any weakness. Everyone around them is trying to be helpful by telling them they are strong, that they are an inspiration. This is all well-meaning, but it contributes to patients not feeling safe enough to be vulnerable, to share what they are really going through.
Patients are also acutely aware of what their cancer diagnosis is doing to their loved ones or close friends. When they try to share, the strain and stress they are putting on their loved ones—who are powerless to make things better—is often visibly apparent. The more they share about the difficulties they are experiencing due to the cancer or the associated treatment, the more pain they think they’ll cause. So again, they tend to hold back.
How do we ensure patients feel safe sharing what they are going through? How do we ensure patients are not viewed as weak when they share? Patients need to have a safe place to share, for their mental well-being but also so that potentially life-threatening side effects are identified early before they become a problem. How do we move away from the battle metaphor that leaves patients feeling guilty when their disease progresses that perhaps they were not fighting hard enough?
Oncologists and oncology nurses can help patients even more by creating a safe psychological place for patients. How can they do this? Start by talking openly at each point in the journey about what patients may be experiencing. Give patients permission to speak openly. Seeking to understand how patients experience the disease, treatment, and associated side effects can only serve to make oncologists and oncology nurses better practitioners.
Speak honestly with patients about the types of things that may prompt a change in treatment and how common they are (if they are interested to know). And reassure them that if a change in treatment in needed, it is not the end of the world. Talk through the most common side effects and things patients can proactively do with diet, exercise, supplements, and lifestyle to prevent or help mitigate the side effects. Ensure patients know about all of the resources available to them to help with nutrition, side effects, and emotional and financial support.
Be an empathetic ear. If a patient complains about not being able to button their shirt, let them be heard and tell them you know that must be difficult. Sometimes all they need is a kind listener so they do not have to cause further pain to their loved ones who cannot help.
Mary Dominiecki, PhD, is the vice president of oncology at THE PLANNING SHOP. She is a lobular breast cancer survivor and patient advocate for the Lobular Breast Cancer Alliance and Komen Advocates in Science. Follow her on Twitter @psumarydom.