Suffering is a central, and contested, issue in bioethics. What does it mean to suffer? Who decides if a person is suffering? What measures should or should not be taken to address suffering?
These questions aren’t abstractions—they come up regularly in clinical settings. It’s no surprise then that suffering has been a recurring focus of scholarship for Greenwall Faculty Scholars and Alums. In recent years, members of our Faculty Scholars community have examined how suffering is defined, measured, invoked, and sometimes misunderstood—and what’s ethically at stake when it is.
Theoretical Framing
Several Faculty Scholars and Alums have explored the definition of suffering and whether or how much suffering should matter in medical decision-making. In his paper, Objective Suffering: What is it? What Could it Be?, published in the Cambridge Quarterly of Healthcare Ethics, Tyler Tate, MD, considers objective suffering—the concept that suffering is independent and subject to outside criteria as opposed to being subjective and tied to first-person experience. Dr. Tate proposes moving beyond the “confining dichotomy of objectivity and subjectivity,” and instead suggests a novel, yet tentative, definition of suffering as “the experience of a gap between how things are and how things ought to be.”
“[S]uffering itself does not matter much, if at all, more than the losses that occasion it already do,” writes Brent M. Kious, MD, PhD, in his Cambridge Quarterly of Healthcare Ethics publication, How Much Does Suffering Matter? Dr. Kious argues that “value-based suffering,” understood as the experience of distress in response to threats against something one values, does not in itself have strong independent moral significance, and therefore, “the goal of medicine should not be to alleviate suffering;” instead, “it should be to promote other human interests as they are impinged upon by medical problems.”
Dr. Kious; Emily A. Largent, JD, PhD, RN; Jennifer Blumenthal-Barby, PhD; and coauthors go a step further and ask: Is Suffering a Useless Concept? In The American Journal of Bioethics publication, they analyze cases with patients in “vastly different clinical situations [that] may be plausibly described as ‘suffering.’” They suggest that ambiguity around suffering can lead to poor decision-making processes, confusion, and miscommunication, and propose “questions meant to guide discussion and specify the most ethically relevant elements of a patient’s condition.” These questions address a patient’s physical pain; emotional and existential distress; and goal-, value-, and flourishing-based considerations.
Clinical Applications
Scholars have examined how claims of suffering function within specific clinical settings. For example, Dr. Tate and coauthors evaluated how suffering is invoked in the Pediatric Intensive Care Unit (PICU) and its implications for decision-making. The Journal of Pain and Symptom Management publication, Exploring How Claims of “Suffering” Are Operationalized in Pediatric Critical Care, identified three themes: “‘[S]uffering’ was rarely defined;” “[d]iscussions of patient ‘suffering’ included collateral impacts on providers and families, in addition to impacts on patient experience;” and finally, “[p]hysicians used ‘suffering’ to pivot goals of care, while parents used it variably.” The authors conclude that by “better incorporating patient and family perspectives on ‘suffering’ into clinical decision-making, healthcare providers can better align their communication with the needs and preferences of patient families.”
While Dr. Tate examined suffering in the PICU, Dr. Kious, Prof. Blumenthal-Barby, and others focused on suffering in the Intensive Care Unit (ICU) for their AJOB Empirical Bioethics paper, Talking About Suffering in the Intensive Care Unit. Examining transcripts from conversations between clinicians and patients’ families, the authors observe how the term “suffering” is used in these conversations and how it relates to treatment and decision-making for patients in ICUs.
Prof. Blumenthal-Barby discussed suffering as it pertains to patients who don’t (or don’t often) experience sensations or feelings for her Cambridge Quarterly of Healthcare Ethics paper, Suffering at the Margins: Non-Experiential Suffering and Disorders of Consciousness. She concludes that “[c]oncerns about the non-experiential suffering of [such patients] are perhaps better described as concerns about harms or wrongs” and “attributions of non-experiential suffering carry a significant risk of problematic use including the import of unsupported hidden value judgments.”
Greenwall Board Member and Faculty Scholar Alum Jason Karlawish, MD, asks How do Persons With Dementia Suffer? in the Cambridge Quarterly of Healthcare Ethics. Dr. Karlawish “pushes back on the idea that subjectivity alone is the basis to determine whether a person with dementia is suffering.” He argues that not only can a person with dementia indicate suffering; their caregivers can also indicate whether the person is suffering—even if the patient claims the contrary due to symptoms of dementia.
For further reading from our Scholars and Alums, check out these publications:
- Tyler Tate, et. al., “A Shell of My Former Self”: Using Figurative Language to Promote Communication About Patient Suffering, Narrative Inquiry in Bioethics, November 8, 2022
- Brent M. Kious, Three Kinds of Suffering and Their Relative Moral Significance, Bioethics, March 12, 2022
- Scott Y.H. Kim, MD, PhD, The Unstable Boundary of Suffering-Based Euthanasia Regimes, The American Journal of Bioethics, January 28, 2022
- Tyler Tate, Pediatric Suffering and the Burden of Proof, Pediatrics, August 1, 2020
- Joel Michael Reynolds, PhD, Disability and the Problem of Suffering, Journal of Medical Ethics, July 23, 2020
- Andrew Peterson, PhD, Jason Karlawish, et. al., Alive Inside, Bioethics, October 2, 2019
- Tyler Tate, et. al., What We Mean When We Talk About Suffering—and Why Eric Cassell Should Not Have the Last Word, Perspectives in Biology and Medicine, April 23, 2019