Week 2 - Illness, Disease, Pain, Suffering

Preamble

• The way healthcare is changing because of economic pressure, corporatization, privatization, advances in AI, etc.

• Deepening dehumanization of care (Ex: The relationship between doc & patient becomes transactional)

• Providers need highly developed communication skills (where healthcare is becoming more colder in a way)

• A greater need to integrate the arts & humanities into teaching and the practice of healhcare.

Asymmetry of Information

• Helps understand why trust is so important in a clinical setting.
  (Ex: Trust w/ patient & doc, the patient isn’t a knower, they need to trust docs who are)

• The recipient of care cannot judge the effectiveness of care.

Bruno Latour

• Clinicians must reach beyond their own assumptions to hear, and be affected by, the unfamiliar worlds of patients.

Articulate Body

• “To Articulate” = To explain something.

• A body that’s “learning to be affected”, including their clinicians’ own vulnerable body.

• The argument what doc needs to do. (Doc needs to be articulated or learn how to be affected. Like a wooden doll).

Effective

Cause & Affect, outcome, and consequences

Affective

• To be affected by something.

• Can be things about you.

Imagination

• Patient’s world is revealed through stories they tell. —> (We don’t know anything about anyone until they tell us. Docs need to know patient’s story to understand and diagnose them)

• Arranging and rearranging elements of an as yet unknown, partially known, emerging life and the world.

• It questions the purpose and meaning in a life are not science, they are the imaginative work of art and humanities.

William Osler

• 1860s-1900s, is the father of modern medicine, system of residency, and is Canadian.

• “It’s much more important to know what sort of patient has a disease than to know which disease a patient has.”

• For patients, storytelling is a matter of life and death. —> (How you tell a story may affect how serious they’ll take you)

• Illness stories must be at the centre of clinical encounters.

• “…beauty and suffering still meet in the arena of storytelling” —> (We need imagination to understand human meaning)

Social Determinants of Health

• Different social factors that will determine what caused the illness.

Sociological Imagination

• Someone’s biography and health emerge from historical, social, and economic processes.

• Imaginative lens moves us past a narrow biological function to multidimensional lived experiences. —> (Imagine the patient as more than just a disease)

• How clinicians imagine human worth and dignity has real consequences.

Fractured Self

• Patients struggle for language to articulate their lives.

• Difficult to give an account of one’s self amidst disorienting experience of illness & disability. —> (Breaks who we think we are in the world, therefore, leading to suffering).

• Ordinary language may be insufficient to describe this suffering.

• Need a voice beyond words, a new language.

Suffering

• The physical body doesn’t suffer, PEOPLE suffer.

• Numerous ways to suffer.

Metaphor

• A concealed invitation the listener interprets and accepts = intimacy.

Francis Bacon

• Asking the right question, is the beginning of all wisdom.

Disembodied

• It’s primary accounts of the body are lab values, images, reports.

• Medicine is TOO focused

• Contemporary medicines values lab work.

Embody

Fusion of mind & body

Body

• The ground of our history, memory, trauma, & desire.

• Illness fractures the body.

Decarte

• Animals didn’t have minds, they’re mostly machinery

• Humans are also machinery with mind, body, & souls.

Embodiment

• The physical and metaphysical are interwoven and inseparable.

• Although bodies heal, there’s a way that we’ll still be needed to be healed.

• (Ex: Athletes injury can be healed, but not their emotional or mental.)

Poetic Materiality

• How imagination wraps around and shapes experience across personal, social, and historical dimensions.

Making

• Gives form to imagination, voice to questions whose answers are never complete.

Art Frank’s 4 Key Distinctions

1. Disease vs. Illness

2. Patient vs. Ill Person

3. Medical History vs. Ill person’s story

4. Treatment vs. Care
   
   One is more biomedical and the other is more humanistic

Disease

• A condition someone has

• Condition of the body reducible to biochemistry (“bare disease”)

Illness

• An experience someone has

• The experience that involves a biography, a reflective consciousness, multiple relationships, and institutions.

Patient

• A way to describe someone

• Seen as more “Colder”

• Identity imposed upon a person by medical / health institutions

Ill Person

• A patient sometimes, but is much bigger than something else.

• Character in it’s own story.

• A patient only some of the time and remains many other things as well.

Medical History

• A clinical encounter

• Reduced to notes & charts

• An understanding of the patient in terms of the nature of the disease

• “Sets parameters” of relevant information that create “illusion” of knowing the ill person.

Ill Person’s Story

• Person’s narrative, stories, and own experiences.

• Invites patient to be, to reinvent their own character.

• What the storyteller needs the listener to know about him or herself to appreciate the self.

Treatment

• A “service” w/ monetary value

• Instrumental; requires technical expertise

• Defined boundaries between bodies giving and receiving treatment.

• “Untroubled by its use of power as a resource”

Care

• Gives a sense of belonging, seen as more intimate.

• A “Gift”

• Involves emotion and cognition

• Relational nature of giver and receiver

• “Sensitive to asymmetries of power”

Tensions —> “Fundamental Asymmetry”

• Foundational course concepts

• Tends to biomedical vs. humanistic perspectives on health

Why is pain hard to represent?

• It’s physical and physic at once.

• Different ways to experience pain

• Ppl have different ways of coping.

Representation

• The use of signs that stand in for or take the place of something else.

• Look like or resemble something or someone

• Stand in for something or someone

• Present a second time; to-represent —> to give it back again.

The means of literary representation is words

• We use words to represent literary phenomenon

The means of visual representation is the image or icon

• The use of images and icons.

Medical Images

• There’s no image or representation that’s mediated by the apparatus

• Any image (representation) that is NOT person.

Mediator: Camera, X-Ray Machine

Representation: X-Ray Image

• Medical images of the body are generated, shaped, even distorted by cultural influences and assumptions.

• Any medical image is an artifact.

• Any act of imaging bodies, especially when in pain is always involving an imaginative leap.

Mimetic

• Direct copy of whats showing

• Fixed meaning

Diegetic

• Told, recounted, and interpreted

Pain

• Imaging and imagining the body as something to be seen and turned inside out to see how pain gets communicated.

• Pain is subjective —> No full way to measure or “see” it.

• Pain is immeasurable and to some extent visible.

Examples of Pain Scales

• McGill

• Faces

McGill Pain Scale

• Requires a high level of literacy

• May be more descriptive and precise

Faces Pain Scale

• More intermediate / simplified

• Has visual representations

• Might not be as descriptive or as in-depth

Existential Suffering

• Deep psychological and emotional distress when confronting meaning, purpose and value of life in face of mortality.

• Fears of the unknown, loss of identity, perceived pointlessness of life.

Nociception

• Detection of painful stimulus, physical phenomenon

• We can suffer even if there’s no pain