I’m a doctor. So is my mother. When she got cancer, I realized how little that mattered.
by Bobbie Kumar
As a doctor, I know patients often dread getting an after-hours call from me, afraid that I have troubling information to impart. But I didn’t expect to be on the receiving end, the night my sister, a physician herself, rang me up.
“Bobbie, I’m here with mom. Her biopsy came back. It’s stage III adenocarcinoma, metastatic cancer.”
I was in my first year out of residency practicing primary care in Georgia, devoting what little free time I had to preparing for my wedding and honeymoon four months from then. Adding to this challenge, my mother — now a retired family physician — lived far from me, alone in Detroit. (My sister was in Wisconsin with two kids under 5, one of whom was a newborn.)
By that point in my career, I had delivered cancer diagnoses to dozens of patients; but for the first time, it was being given to me by a doctor, who also happened to be my family.
In the months that followed, the experience of caring for my mother would take all three of us deep through the thicket of the US healthcare system, giving us the patient’s perspective on what was sorely missing — and needed — in the process.
Roles reversed: Facing cancer as a patient — and caregiver
I’d often wait eagerly for my mother to report back on her latest trip to the oncologist. And equally as often, she would be too overwhelmed and upset to summarize those visits, asking me to discuss it with my sister, or call her doctor directly instead. These calls began to feel and sound like interrogations.
Oftentimes (to my frustration especially), she’d admit to having pertinent medical questions for her doctor, but being too anxious in the moment to ask them. I started to realize how much of a toll a health crisis can take now that my family was in one; my years of training as a physician went quickly out the window.
“I really need to be coming to these appointments with you, Mom,” I finally told her. “I can’t just piggyback off what you’re saying to them.”
Eventually, I began to understand why it was so difficult for her to speak about her cancer. For decades, she had treated so many tumor-ridden patients herself, and intimately knew the natural course malignancy can take. And having worked in a hospital seeing the critically ill, she rarely saw patients who had promising outcomes after cancer– just the ones suffering from debilitating complications, treatment side effects, or terminal stages of the disease.
“Bobbie, I just want to live long enough to see your children,” my mother told me a few days before my wedding. “If I can do that, then I’ll be happy. “
As she moved along in her treatment course, the communication shortfalls were glaring. During her initial evaluation to begin chemotherapy, she forgot to mention a needle-stick 40 years prior that resulted in her contracting hepatitis, for which she was a chronic carrier of. Because it had never been a problem in the past, she didn’t think to bring it up as a “medical problem”.
And this is not uncommon, really, as it’s a setback I have with my own patients: resolved health issues in their history that are not reported to me, making the ability to appropriately manage them challenging.
So in my mother’s case where potent IV chemotherapy suppressed her body’s natural immunity, she no longer had the protection against the dormant virus. Instead, she developed acute liver failure, becoming severely jaundiced and requiring hospitalization on the eve following my wedding. And again, I was far away — but this time, on my honeymoon in Jamaica.
It was then that we decided that my mother should leave Detroit and live full-time with my husband and me in Savannah. The hospital visits, we quickly learned, were only a small part of my mother’s care. She desperately needed someone to navigate her prescribed care plan, connect her to the right people at every stage of treatment, advocate for her during insurance calls regarding coverage, prepare meals when she was too ill to do so herself, and even manage her finances so she wouldn’t have to. All of which would have been nearly impossible for me to do were she still living on the other end of the country.
After nearly three difficult years of treatment, I’m happy to say that my mother is cancer-free. And holds my children often.
But I’m still processing the insights I gained through that experience.
As Boomers age into needing care, our health care system falls short
While I recognize that my mother’s clinical course and family situation is fairly unique, it’s also pretty typical of an emerging trend: As the Boomer generation ages, responsibility for many aspects of their care fall onto their children. The parents of Generation Z children, most in their 40s and 50s now, are also not far behind.
In the United States and much of the West, many of us not only live in a different home from our aging parents but often in another time zone. According to a recent U.S. Census Bureau and Harvard University study, 1 in 5 Americans in their 20s live over 100 miles away from their childhood hometown.
At the same time, more than 1 in 3 Americans older than 50 — most of them parents or grandparents — live alone.
As Americans, the number of years in relative good health are expanding, but our resources as caregivers to aging parents are not. There’s an abundance of podcasts, apps and other devices to support new parents in caring for young children — but little is offered to adult children who are new caregivers to aging parents in these life transitions.
Unfortunately, our health care system is falling short on addressing these trends. Doctors like me are typically relegated to 15–30 minutes per patient, per visit. My fear is our aging population will expose the fallacy in this process: Short face-to-face moments with patients are insufficient to support longitudinal health needs, support that is ongoing, adaptive and inclusive of the patient’s caretakers as well.
On a positive note, this experience has improved my own interactions with patients, giving me greater empathy for those life-changing moments and their impact. Even coming from a place of privilege — knowing the medicine, who in the system to contact, what the next steps are and how to do them efficiently — it was still overwhelming to be my mother’s caretaker at such a trying time in her health journey. I’m now keenly aware of some of the challenges that await my patients and their loved ones when they leave my office.
It also illustrated to me just how much systemic change is needed to our health system — beyond institutions and solutions, but even across cultural barriers as well. We focus on nuclear families and devote little attention to the multi-generational divide. Yet most everyone reading these words will need to help their aging loved ones deal with a serious health crisis.
At the moment, I fear we are not yet prepared as a country to manage this effectively — but remain hopeful in our collective will to better care for our aging families, and add quality of life to their years.