Abstract
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We had the privilege of caring for Mrs. P. and supporting her husband through the difficult course of cancer care from diagnosis until she died. She always came to her appointments smiling, dressed in her finest outfits, with meticulous makeup and styled wig, despite an exhausting 2-hour drive from her home 90 miles away. When asked how she was doing, she always responded “Oh, I'm, fine; I'm okey-dokey.” On occasion she would say, “I am a little queasy” or “I have a little ache here or there” but would always end her statements with, “Oh, its nothing, I'm fine.” When encouraged to expand on her little aches or queasiness, she minimized her symptoms, and was reluctant to take medications because her “symptoms were not that bad.” Our team worked to try to alleviate reported symptoms but also recognized her need to have control over her experience.
During 2 years of care, she participated in three clinical trials, received a variety of chemotherapeutic agents, and whole-brain irradiation for brain metastases. In the clinic, she faced disease progression and treatment changes with a smile and a positive outlook, but her husband shared his worry about recurrence with us, always hoping something new would come along so that his wife would be cured. He struggled with the roller coaster of CT scan results, sometimes showing stable disease, and other times identifying disease progression, while Mrs. P. appeared totally in control of her emotions.
It was not until 2 years after her death, when her beloved husband came to visit and to share her journals with us, that we really knew Mrs. P.'s true cancer experience. The oncologist, oncology nurse, and palliative care team were very involved in her care, but only saw the picture Mrs. P. painted for us—one of a very stylish, sharp woman, taking control of a difficult situation, enjoying life despite a “few little aches and pains,” and anxious to receive any treatment that might prolong her survival.
Her daily journal, however, told the story of a woman suffering with poorly controlled pain, nausea, aching legs, and overwhelming fatigue. Her quality of life was severely affected by the nausea, limiting her ability to enjoy her love of food, the pain that drained her energy and interfered with her sleeping, and the fatigue that prevented her from her usual “spring and fall cleaning” and “cookie baking.” She wrote about feeling “down-in-the-dumps” and reported that “I'm not jolly at all,” describing symptoms of depression that we never knew. She recorded her fears and worries in her diary and recorded her thoughts and feelings every day. She had protected her family and loved ones from worry all her life and throughout the disease trajectory, she continued her role as protector, of her husband, family, and even of the cancer team, writing, “I did not tell them how I was feeling,” or when she learned of progression she wrote, “I feel like I have let everyone down, family, friends, and staff at the hospital—will try to make it easier on everyone.”
Now, 4 years after her death, many questions remain unanswered. Her physical symptoms of pain, nausea, and fatigue were poorly controlled, her psychological well-being was threatened by mood changes, and her social well-being was severely affected by the physical symptoms that limited her ability to cook, bake, and enjoy the company of family and friends. She privately turned to God to help her through the journey, writing, “We need help from above.” What could we have done differently to identify and address her fears and concerns that she described only in her journal? Did fears of her losing control, of having chemotherapy withdrawn if she reported the severity of her symptoms, or of her desire to protect her family and health care team from worry influence her decision to minimize these terrible symptoms and to take only acetaminophen for pain for many months?
Having read and re-read her journal entries, we have struggled with the fact that what we perceived to be her cancer experience was not her reality. By respecting her desire for autonomy and control, we may have lost opportunities to improve her pain, symptoms, and quality of life. How many others that we are caring for are suffering in silence?
There are a number of lessons we have learned from Mrs. P.'s journal. (1) One cannot always judge the book by its cover and what we perceive may not be the real experience. (2) Clinic visits are only a brief moment in time compared to the hours, days, and weeks between visits. We often do not know what the experience is in the home if we rely on the snapshot of the clinic visit to guide our understanding of how patients and families are really doing. It may be helpful to offer home palliative care to patients, so that the true reality of the cancer journey, rather than the clinic reality, may have an opportunity to surface. (3) Patients paint the picture they want us to see, and sometimes they do not want us to see them as vulnerable and out of control. (4) As an interdisciplinary team, we work hard to help patients deal with the challenges of facing and living with cancer. We must continue to try to alleviate unnecessary suffering, but be willing to accept that some things cannot be fixed.