Is Patient Centered Medication Adherence an Oxymoron? Self-Management of Medications in the Lived Experience of Chronic Illness

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Is Patient Centered Medication Adherence an Oxymoron? Self-Management of Medications in the Lived Experience of Chronic Illness

Bruce L. Lambert, Ph.D.
Professor
Department of Pharmacy Administration
University of Illinois at Chicago
lambertb@uic.edu

This project was supported in part by grant 1U19HS021093-01 from AHRQ. The content is solely the responsibility of the authors and does not necessarily represent the official views of the AHRQ.

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Overview

• What is Patient-Centered?
• The Trajectory Model of Chronic Illness.
• Body-Biography-Conceptions of Self.
• The Meaning of Medication.
• Keeping the Balance and Monitoring the Self System.

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"Adherence" is Often Abysmal.

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We're Not Really Sure Why.

(in spite of >74K articles in PubMed)

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It Makes Us (Health Professionals) Look Bad and Feel Foolish and Ineffective.

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We Think Patients Would Be Much Better Off If They'd Do As They're Told.

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Maybe Being "Patient-centered" Will Help? But What Does That Mean?

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NOT "Patient-in-the-center" Us Looking At Them.

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Image: A photograph of a patient in bed is shown surrounded by cartoon images of smiling doctors; arrows point from each doctor to the patient.

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Image: An image of a deer is shown in crosshairs.

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Through the Patient's Own Eyes. In Their Own Words.

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Image: A photograph shows a masked and gowned surgical team peering down, as if they are being seen from the patient's point of view.

Source: stickyslides.blogspot.com

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Ethnography
Grounded Theory
Qualitative
Interview-Based
Autobiographical

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The Trajectory Model

Images: The covers of two books are shown: Unending Work and Care by Juliet M. Corbin and Anselm Strauss, and Good Days, Bad Days: The Self in Chronic Illness and Time by Kathy Charmaz.

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Short Period of Evident Decline

Image: A line graph shows the abrupt decline in function for "mostly cancer" patients after the onset of incurable cancer. Specialist palliative care input is available at the beginning of the decline; the decline continues "often a few years, but... usually over a few months" until death.

Source: Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003.

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Long term limitations with intermittent serious episodes

Image: A line graph shows a steady decline in function for "mostly heart and lung failure" patients. The steady decrease in function is occasionally interrupted by severe "dips," which are noted as "sometimes emergency hospital admissions." The decline continues "2-5 years, but death usually seems 'sudden'."

Source: Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003.

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Prolonged dwindling

Image: A line graph shows a "prolonged dwindling" in function for "mostly frailty and dementia" patients. Onset in the decrease "could be deficits in functional capacity, speech, cognition." The decline is "quite variable-up to 6-8 years" until death.

Source: Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003.

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Defining Characteristics of Chronic Illness (Corbin & Strauss)

1. Home.
2. Quality of life.
3. Lifelong Work.
4. Phases.
5. Variability of work by phase.
6. Illness, household and biographical work.
7. Arrangements.
8. Variability of arrangements.
9. Continuous rearrangement.
10. Work of health professionals only part of overall work.
11. Articulation of lay and professional work.
12. Concept of trajectory.

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Illness Work
Household Work
Biographical Work

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The BBC Chain

Image: The three "links" in the BBC Chain are shown connected to each other by double-headed arrows:

• Biography.
• Body.
• Conceptions of Self.

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Health = Stable Alignment of Body, Biography and Identity

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Primary Motivation of Chronically Ill Person Is To Restore/Maintain Stable Alignment of BBC Chain.

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By Any Means Necessary.

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If Regimen Helps Achieve Primary Goal, Then Person Will Follow, If Not Then Not.

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Body Failure

E.g., paralysis, tremors, limps, memory loss, incontinence, fatigue, constipation, shortness of breath, impotence, dizziness, weakness, pain, blindness, deafness, slurred speech, scars, sores, deformities, amputations, etc.

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Body Failures Destabilize the BBC Chain.

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Body Failure → Failed Performance → Loss of Self

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Regimens Both Cause and Cure Body Failures.

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Identity-Relevant Performances

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Body Failure Only Has Biographical Significance If It Impedes Identity-relevant Performance.

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Loss of Self is Fundamental Form of Suffering in Chronic Illness.

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Image: A photo-collage shows pieces of hand-written text pasted over the photograph of a young woman. The text reads "I am so scared that I will never again be the person I was before I got sick. I miss her."

Source: www.postsecret.com

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Meaning of Medication

(Esp. in relation to identity and biography)

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To Take or Not To Take
=
To Be or Not To Be

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Challenge is to Build and Test Interventions Based on Trajectory Model

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Merge Qualitative With Quantitative

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Caveats:
Health Literacy
Access
Acute vs. chronic
Intentional/Unintentional

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Summary

• Ethnographic, qualitative accounts, e.g., The Trajectory Model, offer the most authentically patient-centered descriptions of the experience of chronic illness.
• Restoring/maintaining stability of BBC Chain is main motivator for chronically ill people.
• Decisions about medication are decisions about identity and biography.
• Hypothesis: Regimens that stabilize BBC chain, that facilitate biographical work, that produce positive identity transformations, will be adhered to. Others will not.