Dr Francis Weld Peabody of the Harvard Medical School made a famous statement about clinical medicine in 1925: "The secret of the care of the patient is in caring for the patient."1 This statement contains truth and wisdom and has been used to enlighten generations of medical students. But my question is, what is real and meaningful "caring" for cancer patients by oncology clinicians? Is this kind of caring possible?
I have a friend who was recently diagnosed with stage I breast cancer and has experienced surgery and is now beginning chemotherapy. My conversation with her several days ago impressed me very much. She told me that it took her a full 3 days to understand that she herself had cancer and to accept that a connection now existed between a vocabulary related to cancer and her real life. Even after she achieved this understanding, she remained quite affected by the cancer vocabulary and its connection to her. For example, when her doctor told her that she had a 85% to 95% chance to become a cancer survivor, she was stunned and asked him, "Wait a minute, are you talking about cancer survival? Does that mean that I have a chance not to survive?" When her nurse told her that she was fortunate to have the cancer detected at such an early stage compared with other patients, my friend was angry and pointed to her own eyes, which were already filled with tears and said loudly, "Keep talking that way; I know I am lucky, but I just can't control this[horizontal ellipsis]." To be honest, as an oncology nurse scientist, I saw nothing wrong with what her doctor and nurse had said. Although I can explain my friend's anger as denial or as some other kind of normal emotional response from being a newly diagnosed cancer patient, I was shocked by my friend's strong response. This shock has helped me to reconsider how a cancer patient may think and how understanding may help achieve what Dr Peabody was referring to as caring for patients.
My friend's recounting reminded me of another story. A promising young female dancer fell accidentally during her performance on stage. She experienced paraplegia. A very renowned physician was invited to treat her. After his examination, his first sentence spoken to her was "Don't worry. I think the chance that you can sit in a wheelchair and self-manage your daily life is great." The young dancer immediately refused to have the famous physician treat her and insisted on changing to another doctor for further treatment. Two years later in an interview on a TV show, the same young woman sitting in her wheelchair recalled her experience at that time: "You know, I had a bright future in front of me. I had a very high expectation of being able to dance again on stage. How could I just accept the outcome of 'self-management of my daily life and sitting in a wheelchair'? That sounded like I was already labeled as a piece of passing-season goods that was now on sale; no more value for a good price. That did not at all match with my life goal."
These two stories caused me to ponder in a new way the relationship between patients and oncology caregivers and to rethink the meaning of "best caring." No doubt, the clinicians involved in these two cases were caring about their patients but perhaps in a professional, scientific way. There is a substantial, natural gap between cancer patients and professional caregivers based on their usual role in the real world. No matter how hard we work as oncology specialists or how well we achieve in science, the natural gap between the patients and oncology clinicians can never be totally addressed because both sides start from a different place and will go to a different destination having a different goal and different expectations. Theoretically speaking, regarding the development of oncology science and the refinement of oncology care, nothing we do in cancer care is perfect. Indeed, everything we do in both regards may be a compromise between benefit and burden to pursue a balance between length of life and quality of life, and effectiveness of treatment and adverse effect control. Yes, an 85% chance for 5-year survival is positive for a cancer diagnosis, and to be able to self-manage daily care is also positive, given serious neck and spinal cord damage. But, one truth that we as oncology specialists may miss is that every patient comes to us from a normal life before a cancer diagnosis. They have their good life, dreams for a better life, and plans to achieve a desired future much the same as we without the diagnosis have. It is not easy and probably not fair for anyone to be forced to give up a good life, dreams, or future plans no matter the reason. Quite naturally, the early hope for patients is for 100% of their normal life to be restored. It may be unrealistic and irrational, but it is their true feelings and thoughts, which makes it hard for an oncology clinician to satisfy patients if we do not first recognize their self-identity. Excellent cancer care demands an understanding of science but also a sensibility about the soul of a human-being.2 We need to conduct more research to figure out "where they are" and "where we are," to know more about how our patients think and how we think and to explore the gap between the two ways of thinking about the same cancer-affected situation. Such research findings will help us to create a connection. Only when a common understanding is established can a shared goal be established between cancer patients and cancer specialists.
My very best,
-Changrong Yuan, PhD, RN
Editorial Board Member, Cancer Nursing
Professor, College of Nursing,
Second Military Medical University (SMMU), Shanghai, China.
References