Time to Care
Debbie Chase
Word Count 2042
Only a few hours post shoulder reconstruction surgery after a fall, my 85-year old mother could not get out of bed on her own or walk to the bathroom. My vibrant mother had fallen while packing in a New York City hotel to return home. She and my father had spent the week traipsing through museums, riding the subway and walking the city streets. Just as she reached to close her luggage, she suddenly blacked out, crumpled to the ground, landed on her side and cracked her shoulder bone, which then protruded angrily against the skin threatening to break through. A dangerous situation that required surgery and now had left her uncharacteristically frail.
After my mom’s surgery, I stayed with her and watched as hospital staff filed in at their scheduled times with their checklists. First was the nurse who entered my mother’s dimly lit room, heading directly to the computer to open her chart, without greeting my mother or looking in her face to ask how she was feeling. Instead, he reached for her uninjured arm to find which wrist band he needed, and then pointed the wand at it to scan her information. He handed her a small mound of pills, and when I asked him what he was giving her, he glanced back at the computer before he answered and then read the list of meds, never turning to look at us. When I asked him his name, he pointed to the whiteboard where he’d written it, and walked out. I stayed in the room with my mom from 7pm to 7am. During that twelve-hour stretch, no doctor entered her room or inquired about her condition.
I come from a legacy of academic physicians, who taught me that medicine is about discovery, diagnosis and treatment. My maternal grandfather, Dr. Benjamin Castleman, was head of pathology at Massachusetts General Hospital, editor of the New England Journal of Medicine, and champion of the journal’s continuing education tools (CPCs). A renowned Harvard professor, his motto was “Keep your mind on the patient’s care as you look through the microscope.” Health care did not make up one sixth of the economy back then. Medical school debt and medical debt in general was not common, and the array of possible medical treatments and medicines were fewer and far less critical to be insured for. Throughout the mid-20th century, my grandpa was committed to teaching and continuing education. He traveled worldwide, training and supporting medical professionals to ensure they accurately diagnosed and cared for patients. When he was at his hospital in Boston, he met with his medical teams twice a day, every day, to go over the pathologies and work together to map out plans of care.
I wondered how my grandfather would feel about the treatment his daughter received in the hospital. I wondered if he would recognize the medical industrial complex that now dictates health care.
Forty years after his death, my mom was a number on a wrist band, a cog in a massive machine that was based on efficiency, cost benefit justification, and data metrics, as many books and journals have begun documenting. They wanted her out of the room so they could clear the space for the next customer. I felt like we were airline passengers, shuffled in and out according to strict protocols, ostensibly for safety, without considering our wellbeing. Systems that have been stripped of connection and grace in the name of strict processes and procedures.
Aside from the maddening inhumanity, this industrial approach to health care is dangerous. When my mom was being discharged, a nurse practitioner was assigned to write up her medications for the pharmacy. She incorrectly directed my mother to stop taking her cancer medication for two weeks. The NP also ordered opioids, which the orthopedic surgeon and my parents had agreed during rounds earlier that day would not be prescribed unless necessary. The NP had been present during these meetings.
When my father contacted the nurse to tell her this was alarmingly incorrect, she responded that she merely checked boxes on the lists of medicine that were related to the immediate presenting condition and deleted all other previous prescriptions, and that this was her routine practice. My father pointed out the life-threatening consequences of these orders, and her response was that it would take several hours to find a doctor (We were in a hospital!) to write new orders and so maybe we should go home, and she would call in something later to Walgreens.
My father refused to leave with my mother until new orders were filled at the hospital. My father is an endocrinologist. He had the luxury of understanding medicine and probably saved my mom’s life. But why wasn’t the surgeon more closely involved with these orders? Why wasn’t he more closely following or engaged with this case? What happens to the patients who don’t have someone advocating for them?
This experience was not unique to my mom or even to this hospital. Last year, I broke a bone in my foot, and when I went to the orthopedic clinic, where everyone, by definition, has impaired limbs, I had to walk to the desk to check in, walk to the various exam rooms, Xray room, and medical device fitting room—all without assistance. Even the orthopod seemed cavalier, entering my room, heading straight for the laptop to pull up the film, his back to me, and then turning towards me to dig his fingers into the swollen, bruised area of my foot as I winced in pain. He did not ask me how I felt or if I had questions. The only staff that asked me questions were those tasked with collecting my insurance information and copayments.
My father became a doctor at Washington University and head of medical care at the Veteran’s Association Medical Center. When I was a small child, I assumed all doctors worked on Saturday as my dad headed to the free clinic to volunteer his services. When he retired, he volunteered to counsel women at Planned Parenthood. He recently attended his 60th Harvard Medical School reunion. He shared with me the Class of 1964 60th Reunion Report, where alumni sent in their thoughts on medicine today. Many of them echoed one retired ophthalmologist, who wrote, “Too many doctors sit with their backs to the patient looking at the screen. Often doctors do not touch the patient. I remember from long ago the admonition, ‘Listen, the patient is telling you the diagnosis.’ But that implies you talk to the patient.”
My experience in the hospital with my mom and in the clinic for my foot do not point to one singular problem: not the endless forms, quest for dollars, overly scheduled staff, culture of efficiency, or tasks to complete. But as a collective, they created an industry that left me feeling like the patient’s state of being—physical and emotional—was beside the point.
When I come to the hospital or doctor’s office with a problem, I am already very vulnerable physically. I am in pain. I am scared. I am desperate for help, relief, and knowledge. I have noticed over the past months that that vulnerability makes it harder for me to advocate for myself or for my family, to even request human decency when it is absent. My dad advocated for my mom when she was prescribed the wrong medicine. As a physician, not only did he have the atypical advantage of understanding pharmaceuticals, but he also knew better than to revere the health care system as omniscient—a burden and responsibility so many of us place on medical professionals. Why is it easier for me to complain about cold espresso at a coffee shop or to remind the barista to use nonfat milk, but I hesitate to stand up for myself or my mother in the hospital? I wish so many medical professionals did not seem dulled to the basic human needs and vulnerabilities of those before them. But even more than that, I wish I felt enough agency to ask the machine to slow down, listen to us, see us.
I also wonder if the seeming lack of compassion is related to how workers in hospitals in the medical industry are treated. Years ago, I worked with the head of a public hospital in Kansas City. When he was first giving me a tour of the hospital, he took me to the new break room he had added for the maintenance and cleaning staff. It had televisions, free snacks, comfortable chairs, and brightly painted walls. He said that he had refurbished this room as his first project because he knew that the hospital had to be clean and that it would be cleaner with satisfied and respected staff. He had also increased the pay levels for all cleaning staff. People who are treated with humanity act humanely to others.
Part of the problem may also be related to overextension of medical personnel. According to the American Nurses Association, the majority of nurses assigned to the emergency room and ICU are working at twice the recommended ratio for optimal patient care. The Association of American Medical Colleges reports current and projected physician workforce shortages that cause overextension, additional stress, burnout and mental health issues. Perhaps there is just not time enough to care.
Leslie Jamison’s essay, “The Empathy Exams,” describes the author’s experience as a medical actor, where she was paid to be a standardized patient so that medical students could practice diagnosing diseases by observing and talking to patients. The standardized patients then evaluated the students on dozens of items, the most important of which, according to Jamison, is “voiced empathy.” She goes on to explain that empathy can’t be measured by a checklist. “Empathy isn’t just listening. It’s asking the questions whose answers need to be listened to.” Empathy, and in turn, good medical care, is shown by the ability and time it takes to ask questions, observe the patient, and listen to the answers. But caring is also a daily, personal choice.
My son is finishing his second year of medical school. His capacity for empathy has been lauded since preschool, so I know he has the heart to be a good health care provider. He has the training and the background that ensures his cognitive skills. Will he be overwhelmed with paper work? With the need for reimbursement? Will he be curt with his patients?
I wonder if he will be taught the importance of the type of medicine his great-grandfather espoused: “When you look at a slide, remember there is a person behind it.” Will my son be taught to talk to his patients, listen to their concerns, look in their faces for clues of distress beyond the x-rays and blood work? Will he encourage his patients to ask questions and share insights into their symptoms? He will learn medicine with technology and cures his great-grandfather could never imagine. But I hope he inherits his great-grandfather’s ethos and shows his patients the respect and caring his grandmother deserved.
I hope he doesn’t become disillusioned by the industry. An old friend I’ve known since high school, a primary care physician also trained as a psychologist, recently left private practice to join the VA because he felt his ability to provide quality of care was compromised by the pressures on him to meet his patient-volume quota.
As mothers, when our children prepare to enter the workforce, we want them equipped with all the lessons we’ve learned, all our trials. We want all our struggles to be of value and we hope they will mercifully get to avoid what we experienced. But I am acutely aware that there is little I can do to bolster my son for the intricacies of the health care field. I hope he has fortitude. And perseverance. And hope. Conviction. To fight for his patients and for his place and space to care for them in his way. To show up in the work force in the way that is true to himself.
Debbie is a writer, nonprofit strategy consultant, restaurant cook, and mother. She writes about working, power, and motherhood. Her writing has been published in Chicken Soup for the Soul, Cincinnati Review, Jacobin Magazine, Progressive Magazine, Motherly, Discretionary Love, Motherwell, Bright Flash, FiveMinutes, Silk Road, and Journal of Working Class Studies. One of her stories was performed by the St. Louis Repertory Theater as part of the St. Louis Storytelling festival. She lives in St. Louis, Missouri.