The first purpose of clinical medicine, Dr. William J. Donnelly quotes, is
to relieve human suffering.1 Why, then, does the education and practice of mainstream medicine say almost nothing about patient suffering, other than pain relief?
In Donnelly’s 1996 Academic Medicine article, he proposes entering patient suffering into the medical record. In a larger context, it’s a useful discussion about bringing the human being back into the center of healthcare. Donnelly specifically focuses on suffering being recorded. This is a kind of litmus test: we know a professional takes something seriously when it
becomes a matter of written record.
Throughout the paper, Donnelly states that the goal is to have “parity” between the medical account of pathology and the personal account of suffering. This is an admirable and worthy goal. I think, though, that when we commit to splitting our understanding of healing cleanly into personal suffering and biological disease, we lose some ability to understand both the person and the medicine.
Donnelly begins by elaborating on the difference between “pain” and “suffering” as articulated by W. T. Reich: pain is an
unpleasant stimulus related to
an injury or threat of injury to one portion of the self. Suffering, though, is
an anguish threatening
the fulfillment of our intentions but at a deeper level as a frustration to the concrete meaning that we have found in our personal existence.2
Pain is bodily and physical, suffering is a confusion and an existential disruption. Pain can be located in the body. Suffering is a mental state that our life is not what we thought it was. Donnelly points out in several different ways that this doesn’t make suffering any less real.
The written record is a kind of translation of suffering into a specific point of view.
A physician, a social worker, and a consulting psychologist seeing the same patient will compose quite different case histories about that patient. Unsurprisingly, Donnelly says, the medical record is limited to
pathologic physical findings.3
The first problem with relieving suffering is that medical professionals have to see it and recognize it as the reason for medical care, not parallel to it. This is part of the problem with wanting “parity” between suffering and disease or disability. A narrative of suffering contains valuable information which aids in diagnosis and starts a conversation about treatment and intervention.
This isn’t made explicit in Donnelly’s article. I would argue this is part of the problem with getting students to realize the value of seeing suffering. When asked for a paragraph about suffering in the medical record’s History of Present Illness,
half the students comply; half do not.
In general, the author presents a case for the medical record not merely recording, but “transforming” how a suffering patient is viewed. Arthur Kleinman wrote about the difference between “disease” and “illness”.4 Each is a limited view of what is really happening: “disease” is the biomedical pathology, and “illness” is the firsthand account of the experience and effects of that pathology. Kleinman also uses “sickness” as the totality of the
loss of health.
A medical record, in Kleinman’s terms, takes a sickness, ignores the illness, and turns it into a disease. It takes the life experience of a patient, and focuses on expressing it in one profession’s common language.5
Donnelly gives a brief summary of historical attempts to record suffering, and not merely disease. These include Engel’s
biopsychosocial model,6 Weed’s problem-oriented medical record (“POMR”),7 and Smith and Hoppe’s patient-centered interviewing process.8 The author gives some detail about the scope and goals of each, but what they share is trying to make the patient a person beyond the jargon recorded about them. These are all attempts to move towards patient-centered medicine.
The author also includes the model he used to teach medical students about recording suffering in the mid-nineties:
- the patient’s understanding of the disease
- the impact of the disease/disability on the patient’s life, work and relationships
- the patient’s goals
- the patient’s expectations of medical care, and
- if appropriate, the patient’s preferences for end-of-life care and decision-making proxy
Interestingly, Donnelly, includes a criticism of this work:
Monroe and associates later said that I had not offered afull theoretical justification for the use of stories in a situation in which problem solving, not narration, is the primary objective.9
Donnelly’s response is that a physician has an
obligation to identify, and, if possible, ameliorate the suffering associated with ill health.
I believe in the power of stories to heal, and to aid in healing, and I still believe Donnelly missed an opportunity. Hearing the patient talk about their
understanding of the disease is a rich potential source of diagnostic information. Asking patients about how the sickness has interrupted their lives can give a complete picture of the circumstances. The line items on a form can’t give a diagnostician as much information. Weed called this a
desultory, insensitive 10
social history section of the
2 packs a day, moderate drinking, born in Alabama type.
Asking a patient what their goals and expectations are is, blandly put, good customer service. Does the patient expect to receive a prescription and return to health the next day? Do they understand that an intervention is risky, and may result in complications, or a loss of function? Medical procedures can themselves be a source of pain and suffering: is the patient ready to accept that suffering for a long-term gain? Weed wrote that this kind of prompting allows healthcare providers to
plan realistically and sympathetically for the practical welfare of the patient.
Monroe may have been right, that a medical record is a problem-finding and problem-solving document. Narrative, though, illuminates what the true problems are, and how to best intervene to solve them.
It is interesting to me that these discussions of how to engage patients’ suffering include an awareness of what a patient’s life means to them. This explicitly involves story and narrative.
Donnelly also includes a brief discussion of the two meanings of the word “subjective”. Most practitioners view the word as meaning reality experienced from a first-hand perspective, it’s “ontological” meaning.
Unfortunately, Donnelly writes,
the distinction is more commonly understood &hellip epistemically. That is, that “subjective” means depending on personal prejudice or emotions, and unable to be independently verified.
“Subjective data” is normally viewed skeptically in a scientific capacity. It’s essential, though, that the person going through the sickness makes their suffering understood.
The article reviewed: Donnelly, William J. “Taking Suffering Seriously: A New Role for the Medical Case History.” Academic Medicine 71, no. 7 (1996): 730–37.
1 Gerteis, Margaret, S. Edgman-Levitan, Jennifer Daley, and Thomas L. Delbanco. “Introduction: Medicine and Health from the Patient’s Perspective.” In Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care, edited by Margaret Gerteis, S. Edgman-Levitan, Jennifer Daley, and Thomas L. Delbanco, San Francisco: Jossey-Bass, 1993. ↑
2 Reich, Warren Thomas. “Speaking of Suffering: A Moral Account of Compassion.” Soundings: An Interdisciplinary Journal 72, no. 1 (1989): 83–108. ↑
3 McWhinney, Ian R. “Through Clinical Method to a More Humanistic Medicine.” In The Task of Medicine: Dialogue at Wickenburg, edited by Kerr L. White, 218–31. Menlo Park, CA: Henry J. Kaiser Family Foundation, 1988. ↑
4 Kleinman, Arthur. The Illness Narratives: Suffering, Healing, and the Human Condition. Basic Books, 1988. ↑
5 Good, Byron J. Medicine, Rationality, and Experience: An Anthropological Perspective. Cambridge: Cambridge University Press, 1994. ↑
6 Engel, George L. “The Need for a New Medical Model: A Challenge for Biomedicine.” Science (New York, N.Y.) 196, no. 4286 (April 8, 1977): 129–36. ↑
7 Weed, Lawrence L. Medical Records, Medical Education, and Patient Care: The Problem-Oriented Record as a Basic Tool. Cleveland: The Press of Case Western Reserve University, 1969. ↑
8 Smith, Robert C. and Ruth B. Hoppe. “The Patient’s Story: Integrating the Patient- and Physician-Centered Approaches to Interviewing.” Annals of Internal Medicine 115, no. 6 (September 15, 1991): 470. https://doi.org/10.7326/0003-4819-115-6-470. ↑
10 Weed, Lawrence L. Medical Records, Medical Education, and Patient Care: The Problem-Oriented Record as a Basic Tool. Cleveland: The Press of Case Western Reserve University, 1969. ↑