Seeing Cancer Care Through the Eyes of a Patient

Chicago, IL—Lou Levine, a cancer survivor from Chicago, IL, reminded a room full of cancer program executives at the American College of Oncology Admin istrators (ACOA) 2012 annual conference of the unique perspective that patients with cancer have on their treatment and care.

Ms Levine is a 10-year survivor who was treated at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago. She spoke simply and eloquently about the little things that are easy to forget when treating patients, but that can have a significant impact on the patient and his/her journey with cancer.

1. Patient perspective. Ms Levine asked us to remember that patients with cancer may appreciate help in shaping their perspective on the role they fill in their cancer treatment. Many patients may see themselves as victims, buffeted by their circumstances. If you can help these patients to see themselves as potential survivors even more than as patients, that can turn the treatment process into a more positive force.
2. Listen and watch. We all know that hearing the diagnosis of cancer for the first time can be a “deer in the headlights” type of moment. The reality is that most people know very little about cancer and treatment options until that one moment when it becomes a personal diagnosis. It is human nature to want to not appear stupid and to simply nod and respond that there are no questions, when inside there may be “a million” questions. Many patients are nervous or frightened, and they may not be hearing or registering what is being said. Even if you see the patient in front of you nodding his/her head in full agreement, please keep asking if they understand and wait for an answer.
3. Keep the information simple. As many complicated specialties do, we have many terms that are unique to our oncology world and become so much a part of our way of speaking that we often use them with each other without explanation. However, most, if not all, of our patients have not been part of our world for long. Ms Levine urged the audience members to remind their colleagues to be careful about words and phrases they use, even terms that they think everyone knows.
4. "Read" the patients for their level of engagement. Ms Levine suggested that not all patients are willing to take on the burden of understanding their care and making decisions. Some may have consciously or unconsciously offloaded the responsibility of knowledge over to the physician or nurses as the experts—and this could affect how they hear instructions or information essential to their treatment.
5. Be self-aware.This was a very important issue for Ms Levine. She pointed out that she and other patients note many things going on around them, and they usually will try to interpret those (even little) things in terms of their own care. Patients read signs—the little frown as the physician considers their chart, the serious conversation outside the waiting room, a sigh as the physician enters their examination room—and they may misinterpret them as bad signs about their care. They do so even if that frown was remembering that you have to pick up milk on the way home, the serious conversation outside the room was about another person or situation, or perhaps that sigh was a deep breath to clear your mind and focus on this patient, and none of those little things were ever about the patient or his/her cancer.

6. Ms Levine observed that patients with cancer can turn into narcissists and interpret what goes on around them as being about them; therefore, physicians, nurses, and staff have a responsibility to recognize that every facial gesture, every tone of voice, and every sign can be interpreted as significant.

   She remembered clearly how she would read the technicians’ faces as they looked at the mammograms— were they intense, or did they take extra time or repeated tests?—looking for signs of any hint about her condition.

7. Lead with the good news. One key point she made was for oncology center staff to recognize how nervous patients are and to get to the bottom line quickly if it is good news. Ms Levine shared one example of how misleading poor communication can be: years after her cancer treatment, she had a mammogram that needed further explanation. She received a stereotactic breast biopsy (and noted that they really do hurt, no matter what anyone says) and then was told someone would call her on Friday. She explained that it was all right to leave a message on her answering machine, but she was told that that was against policy, especially because she did not identify her name on the answering machine message.

   She also noted that setting expectations is important. (When a patient hears that the office will get back to her on Friday, she is waiting at 8:01 AM. Therefore, if you usually return calls at the end of the day, tell that to the patient up front to reduce anxiety.) Finally, in her case, her phone rang later in the afternoon. The first thing she heard after answering was a somber voice asking, “Are you alone?” and “Is no one with you?” (2 immediate bad signs in her mind).

   She was then told, “Because of your biopsy, we think we see calcification” (but she had no idea what that meant and it was not explained), and “We would like you to come back in 6 months, but there is no immediate concern.” The delay between the somber voice saying, “Are you alone?” and hearing, “There is no immediate concern” seemed like an eternity. It would have been better for the somber voice to have led with “This is Dr X. I have good news,” and then explain the details.

   Another time Ms Levine’s physician left a message telling her that a test “looked funny,” but he did not call back in a timely fashion. She then got a recorded message on her cell phone from “Mike”, the physician assistant, saying that he could not leave a message on her home phone because she did not have her name on the home message machine, and he asked her to call back—the physician wants to discuss her biopsy. She called back and after some difficulty, she finally got Mike. He opened the conversation noting that the physician wants to talk with her about her biopsy, but then proceeded to say that all was fine. She went through needless hours of agony and worry, because of these communication insensitivities.

8. Good Communication is important at all times. Ms Levine had just had a biopsy, and although she still appeared unconscious, her physician came in to stand by her. He noted repeatedly, “Can you hear me? The nodes were clean, you are fine. I will be back.” He then left to attend to another patient as he explained, but she, even semiconscious, had heard him and relaxed. That was just what she needed to hear at that moment. To this day, years later, she still remembers floating in and out of consciousness but with the warmth and comfort of her physician’s words putting her mind at rest.

9. Patients need reassurance. Pa - tients want to know that they are doing the right things in their treatment and may try to exhibit good behavior during treatment based on the belief that if you “like” them, they will heal better and faster. This means that the physicians, staff, and social workers need to assure patients that there is no “right” way to go through this, and that all patients need to do what is right for them. The majority of patients are new at this “cancer thing” and do not know what to do.

   One other memorable moment for Ms Levine was when, after her diagnosis, she met with the physician to discuss her treatment. She was trying to be a “perfect patient” and not cry, which of course did not work. The physician then called in the nurse and social worker, and they said simply to her, “Today and for however long you need us, we are your family.” This made her feel like an individual who was part of the care team, and that they would support her and do whatever was necessary to get her through to the other side of this, and that it was all right to trust her own feelings and her care team.

Quality Measures

Ms Levine’s comments were particularly illuminating at the ACOA conference that was focused on quality and measurement of quality in cancer care. Some of the most valued moments that can have a significant impact on the ability and confidence of the patient to battle cancer are not easily measurable but come from the heart and the daily interactions, gestures, and smiles that the cancer support team shares with each patient every day.