After she developed a serious complication, she wanted to know the facts plainly stated. I told her the treatment would change her quality of life; it would be hard but doable. To this, she replied, “Now, don’t bullsh*t me, I don’t like bullsh*tters.”
These words were uttered by my resilient, 75-year-old patient undergoing peritoneal dialysis. She had recently developed one of the most dreaded complications of this treatment: calciphylaxis.
Her strong will had been apparent to me from the moment I met her in the hospital. When faced with the prospect of in-center dialysis, she fought fiercely to undergo home-based treatment. Other elderly patients with limited social equity will more commonly be prescribed in-center hemodialysis. Most patients who have active lives prefer home-based treatments because they allow less interruption of the daily schedule. Some patients are able to work during the day and have dialysis at night. However, the ability to undergo these treatments requires a clean home and a safe environment. Some patients will require the assistance of family members or friends to help them set up and begin treatment. There has to be rigorous adherence to sanitation of supplies and the ability to recognize contaminated solutions and alter treatments as necessary. While in-center dialysis simply requires the patient to show up regularly.
In-center dialysis offers a degree of assurance that patients will receive the necessary clearance of toxins and fluid removal required for their survival. When I suggested a change in her anticoagulant and a potential transition to in-center dialysis, possibly indefinitely, she adamantly resisted. She resisted because it was very difficult for her to start on peritoneal dialysis in the first place, and it had been recommended that she start with in-center dialysis at that time as well. But she had been resisting many things throughout her life and was not about to simply accept a treatment without completely understanding the rationale for the change. Additionally, in-center dialysis requires her presence, and sometimes it is difficult for patients to make it to centers, especially if the patient finds the cost of transportation to be a burden.
Her frank comment has stayed with me even long after our conversation ended. It’s true that in health care, things are not neatly done experiments. We use the term “practice of medicine” for a reason because medicine is a continual quality improvement project. This patient didn’t want to hear that things would be okay if the situation was, in fact, unclear.
My 8 years of experience as a doctor have taught me that making accurate predictions about a patient’s likelihood of a positive outcome is infinitely complex. Refining my practice as a nephrologist and keeping up with the latest standards of care is only one part of the puzzle. There are many factors and layers alongside each medical case that also contribute greatly to patients’ recoveries and responses to treatment. Sometimes patients are so worried about the side effects of therapies and complications of procedures they do not want to complete said procedures or only partially complete them.
One such example that has been demonstrated in medical literature is how labeling patients as “noncompliant” affects how they receive care in the future. Compliance is not as simple as writing a prescription. I often wish I could write my patients a prescription for proper food, housing, and clothing. But I don’t always know what financial barriers may limit my prescribed treatment, and with it, my patients’ ability to comply. Additionally, the tolerability of treatments may limit the patient’s future trust in other prescriptions. So when I tried to reassure my patient, she saw it as just another arrogant doctor’s confident BS and probed harder for me to give her a more truthful statement: I didn’t actually know how her case would unfold in the coming weeks. Even though I knew the correct prescription, I didn’t know if it would work for her specifically, and if she would be one of the patients who benefited or succumbed to her illness.
I do my best to communicate honestly with the patients I serve, but unfortunately, their treatment plans often change based on access to resources. I think both parties have to understand that although we may want perfectly neat conditions and treatment plans, “diseases don’t always read the textbooks.” Nor does medicine limit itself to the four walls of the hospital.
My goal in writing this is not to prescribe a solution, but rather to publicly empathize with my patients. Continue the discussion of what issues are limiting optimal health in this country. Barriers to health clearly vary across patient populations, and health care teams and policymakers must strive to meet the unique needs of all patients in the settings and circumstances they face.
I understand the health care experience is not always enjoyable; no one wants to be unwell. It becomes even more difficult for impoverished and elderly individuals with compromised organ systems, such as kidney patients. I’m grateful to be with them through their suffering and see them and those who support them as people and partners in their wellness. I advocate for others to do the same. I want policy to reflect our understanding of what determines health and the needs of extremely vulnerable patient populations. And no, I’m not bullshi*tting you.
Tariq Shaheed is an internal medicine physician.
