With all the investigations, imaging and testing involved in personalising treatments, it can be hard to remember to listen to what the patient is saying. One doctor keeps a letter with him as a permanent reminder.
This article was first published in The Oncologist vol.19 no.5, and is republished with permission. ©2014 Alpha Med Press doi:10.1634/theoncologist.2014-0062
The letter arrived on Tuesday
. Although it had been written by the patient four months earlier, it arrived simultaneously with a letter from the hospice outlining the sender’s death the week before. The hospice letter summarised an illness with cancer that had started four years earlier. Initially starting with the crisis of diagnosis, it tracked the subsequent optimistic hope of cure, the hardships of adjuvant chemotherapy, the adjustment of survivorship, followed by the onset of chest discomfort two years later, and with it the devastation of relapse and the shattering realisation of impending mortality that would leave a grieving widower and children without a mother.
On that Tuesday, the two letters lay coincidentally on top of one another. Written months before, the patient’s letter was designed to be posted after the writer’s death. Although shorter than the hospice letter, it was equally comprehensive, charting a four-year therapeutic relationship, expressing gratitude for care received, apologising for searching but appropriate questioning, acknowledging the behind-the-scenes work that orchestrates treatment, emphasising the physician’s duty as advocate, recognising the physician’s frustration of hoping to but being unable to deliver miracles, and finishing with a note of thanks to my family for time spent with her that could have been spent with them. Other letters had been written for her children.
The letter haunted my thoughts for days. In more than two decades as a medical oncologist, I had never received a letter from a patient following his/her death. The preceding months had seen the deaths of several patients who had become friends and friends who had become patients. For all of them, the initial promise of cure had been destroyed by relapse. All had led their lives with cancer to the full. As their doctor, I found them to be inspiring, remarkable people, but their deaths were marked for me by both bitter disappointment that their lives were cut short and soul searching regarding their care. Could different therapy after initial, potentially curative cancer surgery have prevented relapse? Could better treatment selection have increased their chance of living with cancer?
Gandhi said, “You must become the change you wish to see in the world.” As a medical student fascinated by the biology of cancer and recognising that the needs of patients with cancer were unaddressed, I decided to become a medical oncologist. Now, three decades later, I find myself struggling mentally in a career that I love. The science that fascinated me has led to transformative treatment advances, and, whereas my predecessors had therapeutic relationships of what were often only several months, these are now thankfully measured in years for my contemporaries and me. These welcome advances in treatments and technology have produced their own challenges, paradoxically increasing workload, dehumanising medicine, and diminishing time for listening by prioritising tests, investigations, images, and documentation, drowning the patient’s voice as a consequence.
Two days after I received the letter, I met a patient who was living with metastatic breast cancer. She asked me what she would say to God when she dies. I couldn’t answer, so she did, saying that she would tell him to “f*** off,” because she was living in hell here so she might as well live in hell in the afterlife also. Her thoughts reflected trauma that I was poorly equipped to deal with other than to make time to listen, to explore symptoms I could treat, and to identify symptoms for which I could solicit the help of others.
What she hadn’t asked, but perhaps should have, was what I would say to God when I die. Had I cared well for her? Had I worked to my satisfaction rather than hers? Was I kind? Had I used what she and others had said to me to advocate for them? Was I more focused on her diagnostic imaging than on her? Had I been the doctor she needed rather than the doctor she ended up with? Had I taught future doctors the science of medicine, rather than how to provide the care that she needed? Had I used what she and others had said to me to advocate for them? Was I more focused on her diagnostic imaging? My mentors taught me that, for patients with advanced cancer, the quality of their journey is more important than its length. These patients have taught me that scientific advances will only achieve their full potential if they are used to facilitate rather than replace benevolent care. The physician William Osler said, “Listen to the patient and they will tell you the diagnosis.” My interactions with patients have led me to believe that the greatest source of education in medicine is the patients we treat. We would do well to add to Osler’s words, “And they will be your greatest teachers.”
The patient’s letter remains unanswered. Any inadequate reply that I could compose will never be read. It can’t be.
I have placed the letter in a compartment in my briefcase in which I keep treasured letters from my children. It will remain there until I retire as a daily reminder of my professional responsibility and of a privileged therapeutic relationship.
The helpful comments of family, friends, and colleagues on earlier drafts of this paper are gratefully acknowledged
Seamus O’Reilly is affiliated to the Department of Medical Oncology, Cork University Hospital, County Cork, Ireland