As she closed the door behind her, the palliative care geriatrician whom I (Meghan) was shadowing turned and said, “Remember, there are no difficult patients – just difficult situations.” We walked to our next patient, Mrs. C, who was suffering from congestive heart failure. All cures had been exhausted and she was tired of being at the hospital but was scared to enter hospice care. The doctor clasped hands with Mrs. C and explained that starting hospice did not mean giving up — it meant living life on her own terms in the time that was left. After these discussions, Mrs. C appeared more at ease and decided to pursue hospice care at her home.
During this and other palliative care consults, I saw how terminal illness could raise tough questions with patients, families and their providers. However, I also saw that working through these discussions could minimize suffering, give patients a sense of hope and allow them to make the most of their time remaining. Unfortunately, most medical students and doctors report feeling ill-equipped to have conversations about end-of-life care with patients. In this article, we will examine a provider’s role in validating the illness experience and describe how formal medical training on death, dying and suffering can equip physicians to provide better patient care.
According to medical humanist and physician, Eric Cassel, suffering can be defined as a state of distress that occurs when a person’s “intactness … as a complex social and psychological entity” is threatened. Suffering can occur when pain is uncontrollable, chronic or when its source is unknown. Patients may suffer and feel helpless when experiencing such pain due to a lack of perceived control or knowledge of how to relieve it. However, physical pain is just one aspect; there are also psychological, existential and social dimensions that can exacerbate suffering. I (Leonard) lived through this complex experience of suffering secondary to a debilitating illness when I was 19. I had an unusual Clostridioides difficile (C. diff) infection lasting several weeks which was so severe that it caused me to lose 15 pounds. During this period, I felt the uncertainty, vulnerability and alienation associated with being sick. Because it was so rare for a healthy, immunocompetent individual like myself to contract C. diff, it took a week and a half before my doctors were able to diagnose the medical origin of my suffering. To make matters worse, I felt that the doctors cared more about my atypical case of C. diff than about me as a human. Being solely viewed as an “interesting presentation of disease” invalidated my experience and caused me to suffer beyond the pathogenesis of the bacterial infection.
Physicians must work with their patients to identify the underlying and often complex sources of distress. Once a culprit has been identified, a physician can help the patient manage the aspects of distress which they can control, reframe their perceptions and interpretations of the aspects that they can’t control, and ultimately, reassure them that the distress will eventually end. In essence, physicians can empower patients to take control over their distress, thus reducing their suffering.
Regardless of their chosen medical specialty, physicians will inevitably confront death, dying and suffering during their education, training and career. However, due to the curricular gaps in our current medical education system, future physicians are underprepared to hold such conversations with their patients. Indeed, one survey of medical students at two prominent medical schools reported that students received “little or no explicit educational attention to the suffering of patients and their families” or for the clinical management of suffering. Instead, the students learned these clinical skills primarily by ad hoc observation of role models. While ad hoc observation can be a powerful learning method, it could be much more effective when used in tandem with more formal instruction. Not only does this unpreparedness result in suboptimal care, but it may even harm patients, who can suffer more from not feeling heard, validated or supported when discussing their illness with providers.
Medical school curricula should be formalized to teach students how to face suffering and death in clinical practice. We advocate for a longitudinal educational approach: first, incorporating curricula on suffering and death in didactic pre-clinical education will afford students the opportunity to learn foundational concepts, such as how to address suffering and openly discuss death, in a safe space. Secondly, to maximize student learning in the pre-clinical years, lived experience panels and group discussions following the panels may also prove useful; composed of people who have direct, firsthand experience with a particular topic, lived experience panels offer a personal lens through which to view the issue. For suffering and death education, lived experience panels may include patients with terminal illnesses (and their families), palliative care specialists and people living with chronic diseases.
At the University of Texas Medical Branch, we attended such panels during one of our first-year medical courses and found them to be profoundly insightful. These panels deepened our understanding of what patients and families had experienced and demonstrated how providers could better acknowledge and support patients’ needs. Early exposure to formalized curricula on suffering and death through lived experience panels will encourage budding physicians to inquire about their patients’ values throughout all stages of their lives.
Patients deserve to live their lives with dignity. From our experiences, we understand that suffering may interfere with this and cause patients to lose hope. Medical education must address death and suffering early so that such conversations are normalized amongst medical students by the time that they reach the clinical years. By incorporating more instruction on how to acknowledge distress and suffering in medical school curriculum and by learning directly from patients and families, future physicians will be able to work with patients to find the best balance between quantity and quality of life.