Article
Oncologists are challenged to make a different determination when a new patient presents with advanced cancer.
Benjamin Margolis, MD
“Are They Sick?”
Every physician-in-training hears this question after presenting a patient to an attending physician who is trying to build a clinical impression.
An unsure intern might need to think back: Were the bedsheets drawn over the patient’s head? Was their forehead speckled with perspiration? Did they just not look “right”?
This simple question distills the complexity of medicine into 2 categories: “sick” or “not sick.” It’s a vital tool for developing the critical skill of looking at a patient and quickly deciding whether he or she requires immediate attention or can wait for a timely follow-up. With time, determining whether a patient is “sick” or “not sick” gets easier and, for most, eventually becomes a reflex rather than a consciously applied skill.
Oncologists are challenged to make a different determination when a new patient presents with advanced cancer. We know the patient is sick. The question becomes whether they are “too sick.” In the following fictional case, a 55-year-old woman presents to the emergency room with bilateral pleural effusions, extensive peritoneal carcinomatosis, and bilateral hydroureteronephrosis with an elevated creatinine. The results of an omental biopsy show high-grade serous cancer of müllerian origin. Diagnostic and therapeutic thoracenteses confirm malignant pleural effusions.
Julia Fehniger, MD
Despite regular drainage of her pleural fluid, she remains oxygen dependent. She is unable to walk even short distances with assistance and spends the majority of the day in bed. Prior to her hospitalization, she was in good health and had no significant medical problems. She strongly prefers disease-directed treatment.
The situation in which an underlying advanced malignancy limits a patient’s ability to receive primary treatment is difficult for both the patient and the provider. General guidelines for avoiding chemotherapy in patients with poor ECOG performance status and in patients who have exhausted treatment options fail to fully capture the complexity and weight of this decision, particularly for newly diagnosed patients.1,2 Our hope for some clinical improvement, coupled with an underlying desire to provide patients with treatment, pushes providers to be biased toward interventions.
This desire can ultimately be harmful if a lack of understanding into the disease trajectory leads oncologists to recommend treatments that make the patient sicker without any meaningful benefit. All these factors, as well as the finality of the decision to defer treatment, can contribute to provider anguish. While we can usually find solace in the severity of the patient’s presentation and our knowledge of how toxic disease-directed treatments can be, this decision is incredibly difficult.
As oncologists, we spend the majority of our time and energy “fighting” or “conquering” cancer. By focusing on chemotherapeutic or surgical interventions, we provide patients and families with hope and feel that we are having a positive impact on the disease trajectory. We sometimes feel helpless when we can’t offer something to our patients that will allow them to live longer or reverse their symptoms.
However, even when we can’t offer treatment, we still have something to offer. We can provide honest assessments of how much benefit patients will derive from treatment in the face of poor performance status or overwhelming disease burden. We can shift the conversation to focus on doing all we can to mitigate the symptoms and maximize the quality of valuable time spent with family and loved ones. Patients and families are often as appreciative of this thoughtful, holistic approach, despite the disappointment shared by everyone that the patient is too sick for disease-directed therapy.
It can be helpful to remind ourselves that many patients value quality of life over quantity. In a recentsurvey, 86.7% of patients with serious illnesses including cancer chose a hypothetical scenario of living 4 years and dying at home over living 5 years and dying in the intensive care unit.3 As encouraging as these thought experiments can be, the desire to maintain hope of prolonging life is strong—and has been cited by oncologists as a main reason for administering chemotherapy near the end of life.4
As oncology fellows in training, our steep clinical learning curve promotes immense personal and professional growth. Chemotherapy orders that used to take hours now take a fraction of that time. Absorbing the daunting body of literature needed to guide clinical decisions becomes more digestible. Deciding that a patient with an advanced malignancy is too sick for primary treatment may never get easier with time and experience.
Determining if a patient is sick or not sick eventually becomes a reflex, but separating sick from too sick remains challenging. Sometimes, telling a patient they will die of an untreated malignancy can alleviate suffering by transitioning goals of care. Other times, the conversation is accompanied with immense self-doubt and sadness. In our oncology training we reflect on a variety of intense emotions in a regular narrative-medicine didactic, but we rarely receive focused training on processing death and dying as a provider.
Some physicians find solace in handwriting condolence letters. The process of sitting down to reflect on the life of a person you’ve cared for—to honor their family and show the patient meant something to you—can help close even the saddest chapters with purpose.
Oncologists are charged with navigating the gray space between beneficence and nonmaleficence in patients with advanced, untreated malignancy. Conceptualizing the act of navigating this often-uncertain territory as a gift might be key to finding peace in making the weighty decision of deferring treatment in patients with newly diagnosed advanced cancer.
Inherent in the black-and-white “sick versus not sick” determination is a forced dichotomization that helps providers appropriately distribute attention and resources to take the best care of patients. “Sick versus too sick” could not be more of a personal decision and really highlights the intensity of the relationship between patients and their oncologists. As oncology fellows in training, we are learning to take pride in the art of “gray.”
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