My father was diagnosed with cancer the day the world was supposed to end, December 21, 2012. It was impossible to tell whether the primary tumor originated from the esophagus or the stomach because of its size. It had spread to his liver in two places. I googled the prognosis. Median survival was 6 months. Dads aren’t supposed to die at age 56.
After the initial shock, I was mad at myself. Why had I not spoken up? He hadn’t been eating as much at meals. I thought he was trying to lose weight. What if he had been diagnosed sooner?
His oncologist informed us that his metastatic disease was incurable. The statistics were sobering: 24 of 25 (95%) with his diagnosis were dead by five years. He could try chemotherapy, to which “about 50% of patients respond.”
As a medical student, I wanted to know everything. I scoured websites, books, and journal articles for anything that might help. Intellectualization had begun. I was going to cure him.
I thought this because I was, at the time, taking a hiatus from medical school and researching the dietary causes of breast cancer. Thus, with my “expertise,” I believed I could make a miracle happen.
My dad showed interest and understanding of what I was learning and recommending. When he couldn’t keep down the first supplement I offered, a vitamin B complex, I should have realized just how dire the situation was. Still, I was convinced he could recover if he ate all of the right things and none of the bad stuff. I was forcing endless fruits and vegetables, but his ability to eat anything was so compromised that he was only trying to get enough calories. The recommendations from the (obese) dietitian at the cancer center were not helpful; they gave the impression she had stock in Ensure®.
His dietary “noncompliance” (a pejorative medical term) angered me. My interpretation: he wasn’t fighting his hardest to live longer for our family. However, he felt he was doing his best.
Trying to heal him had strained our relationship. I regret how long it took to understand this. My father’s oncologist was the best specialist around. Dad didn’t need another doctor. He needed me as his son. I had to accept that I was not going to cure him.
My father never explicitly requested to be treated like he wasn’t really sick. Sure, he wanted to get better, but he understood his treatments were “just buying time.” He really just wanted us to have our lives back. He felt guilty. So, we accommodated by mostly just trying to continue our lives as before.
Several positives emerged through this tough time as a family. My parents’ bond strengthened. We took a couple of memorable family trips, attending a wedding in San Diego and vacationing with friends in Colorado cabins.
I believe my dad beat the average survival for his disease because he was determined to make it to his youngest son’s high school graduation, his middle son’s college graduation, and his eldest son’s wedding- all in May 2014. My father’s body peacefully stopped in our home exactly two weeks after my wedding on June 13th, which was 19 months after his diagnosis.
My family had a very positive experience with hospice care. Never had I witnessed the dying process. We had the opportunity to say the things we never say enough: love, forgiveness, and gratefulness.
The exposure to palliative care prompted me to think more about life and the role of a physician.
Doctors garner a great deal of respect in part due to their extensive education. In order to practice as an independent, community physician in America, the person had had at least 4 years of college, 4 more for med school, plus at least 3 years for residency, and even more for specialists. (I estimate that I’ll be about 35 years old when I get my first “real job.”). This training grants physicians enormous power: to cut out problems and sew people back up (i.e., surgery) or administer potent poisons to shut down renegade cells (i.e., oncology).
How doctors apply their knowledge has changed over time. In recent decades, the American doctor has moved away from the paternalistic notion of knowing what is best for the patient. Now, the pendulum has swung more toward (some would say excessive) patient autonomy, where medication and surgery are offered like sugary dishes on a dessert tray.
Sciences progresses at an exponential rate. Modern medicine can seem miraculous. Hepatitis C is now curable for 90% of patients; I’m sure that you’ve seen the commercials. With such amazing (and expensive) technology at their fingertips, doctors might appear to have hero-like powers. And shows like ‘House’ and ‘Dr. Oz’ illustrate our society’s idolization of M.D.’s.
Doctors are not heroes. The patient is the hero; the physician is their sidekick. What is the definition of a sidekick? “A sidekick helps the hero fulfill his destiny.” [quotation by Owen Suskind (p104 from Life Animated)].
Medical practice should be a partnership to foster the well-being of the patient. Health is the capacity to do what, and be who, we want. But aside from acute emergencies, an authority cannot bestow health; instead, the vast majority of our health is determined by the communities in which we live and by our mindset and daily choices. Health is cultivated within and without.
From my limited clinical experience, most doctors are just trying to help patients live longer with little foresight or insight into the patient’s goals for the remainder of their life. Modern medicine for the severely sick (and their families) is often a process of lurching from one emergency to another.
Understanding doctors as sidekicks provides a paradigm that can be especially valuable for honoring patients’ values at life’s end. Although we have powerful ways to stave off death, the interventions often conflict with the widely held goal of dying at home, pain-free, and in the company of friends and family.
Better care will take time, literally. It all begins with listening. Understanding what the patient values most enables one to serve best. Being honest with our patients about the inevitability and closeness of death encourages them to prioritize and grants them the chance to say goodbye.
These vital discussions would ideally begin at home, before a life-threatening illness strikes. Fortunately, there are many resources available for catalyzing conversations about advanced care planning. When we miss the opportunity to share our end-of-life wishes, it leaves our loved ones strapped with difficult decisions.
We need to abolish the false dichotomy between palliative care and standard medical care. The goal of all medicine is to empower individuals to live as they choose. We would all do well to reassess how we wish to spend our remaining days. Knowing what a good life means to a person only requires asking the right questions and taking the time to listen.
My father hid his discomfort well throughout most of his illness. Not causing concern was a major priority. After the wedding, he lost the capacity to conceal his pain and his herculean struggle to stay alive. Nothing was staying down and he was too weak to wretch. At this point, I told him; “Dad, there’s really no easy way to say this, but it just seems like your body is shutting down and, and… it’s okay to die.”
Although I’ll never truly know, I believe that my dad needed permission to die. I believe he needed to know that he had been a good father, that he had tried his best and always had good intentions, and that had prepared us to be all right without him. Sometimes, that which we need most goes unspoken.
As a future physician, I imagine going to heroic lengths for my patients, but that won’t make me a hero. We can only play the lead role in our own lives.
You, the patient, are the hero. And I will be your loyal sidekick.