CF Education Day presentations from 2004

The Stanford CF Center team is dedicated to providing the latest information about research, clinical care, and disease management for patients, families, and healthcare professionals. The articles on this page are a compilation of some of the information given at CF Education Day, March 6, 2004

• Understanding and Enhancing Adherence
  by Bryan Lask, MD
• Using Acid-blocking Medicines in CF- is there a downside
  by Jackie Fridge, MD
• Exercise as an alternative to traditional airway clearance
  by Randah Whitley, RPT
• Transplantation
  by Hugh Harris, MD
• Disease progression in CF: can we gain the upper hand
  by Richard Moss, MD
• Thinking in Stories: Medical Ethics and CF
  by Walter Robinson, MD, MPH
• Glutathione in CF
  by Carol Conrad, MD

Understanding and Improving Adherence
Bryan Lask, MD
University of London, UK

1. Cognitive types of poor adherence
   • Rational decision
   • Inadequate knowledge
   • Emotional disturbance
2. Behavioural types of poor adherence
   • Refusal
   • Doubt
   • Denial
3. Determinants of Poor Adherence
   • Complexity of regimen
   • Duration and severity of illness
   • Intrusiveness of treatment
   • Lack of immediate benefit
   • Inappropriate expectations
   • Inadequate knowledge
   • Psychological factors
   • Family factors
4. Improving adherence
   • Comprehensive approach
   • Avoid coercion
   • Concordance
   • Family counselling
   • Individual counselling: feelings and motivation
5. Motivation (readiness to change) and Motivational Enhancement Therapy (MET)
   • Pre-contemplation
   • Contemplation
   • Preparation
   • Action
   • Maintenance
6. Techniques
   • Tracking
   • Open questions
   • Reflective listening
   • Affirmation
   • Curiosity
   • Double reflections
   • Elicit the advantages and disadvantages of adherence

• The specific circumstances of the case
• Our prior practice and implicit/explicit promises
• The goal of the clinical decision
• The timing of the decision
• The reasons we can give, both public and private

• The physician as "heroic rescuer"
• The physician as "learned friend"
• The nurse as patient advocate
• The nurse as caregiver
• The parents/family as "protectors"
• The parents as "heads of whole family"
• The patient as "compliant" "adherent"
• The patient: a life outside the exam room

• preserves the context of decisions
• emphasizes the human story behind the need for medical care
• presents the rich variety of life and illness
• values the wisdom of the physician and the family

• there are indeterminate outcomes, no "answers"
• takes longer
• hard to become skilled at it
• hard to teach to others

Exercise as a Form of Airway Clearance
by Randah Whitley Senior PT-Pediatrics
UNC Children's Hospital

1. Myths of exercise with children
   • Children are generally active
   • Children are active in PE classes
2. Ways to increase exercise in children with CF
   • Start an exercise program at diagnosis or by 6 months
   • Have an exercise test as a part of the clinic visit
   • Have the physician write a prescription for exercise
   • Help parents understand that exercise is more than children's activity
   • Encourage parents to make exercise part of their quality time with their children
   • Encourage parents to pay attention to their own lifestyle
3. Swedish Approach to Exercise
   • Work to stay ahead rather than rehab later
   • Aerobic exercise--bouncing, trampoline, running, swimming, golf
   • Posture exercise--wheelbarrows, push-ups, trunk mobility, Ab-doer

Thinking in Stories: Medical Ethics and CF
by Walter Robinson, MD, MPH
Harvard Medical School
Children's Hospital, Boston

Road map
What are the ethical issue which confront people in the CF community?
What is "standard way of thinking" in medical ethics?
What seems to be missing in the standard thinking?
How can we better understand what we are called on to?

What is the point of "medical ethics"?
Not to justify what we already do, not to preserve our privilege or power.
To help us think about what we do, how we do it, whose interests are at stake.
"Reflective, not reflexive."

What is the content of "medical ethics"?
A set of rules or commandments
A body of legal precedents
A set of principles (often competing)
A set of virtues
A way of thinking
A way of doing a better job, being a better doctor

The Standard View:
Ethics is a set of puzzles to be solved
Ethical problems are choices between two or more courses of action at a point in time; "puzzles to be solved"
Problems are always conflicts (dilemmas) between one or more of the four principles of ethics:
autonomy, beneficence, non-maleficence, and justice

But when we ponder any actual case, it always seems "to depend on..."

A better view:
Medical ethics using a narrative approach
Descriptive power: "In fact, we communicate in stories."
Not every case is new, but every patient is.

How does how we tell the story express our character?

What are our responsibilities as authors of the story?

What sort of story are we writing?

What does thinking in stories do for us?

"Thinking in Stories" (narrative approach) does not replace principles
It is the substrate on which we apply principles
It is a method for self-reflection and clarity
It is the way we learn wisdom and judgment

Some conclusions
A narrative approach to ethics:

But

• there are indeterminate outcomes, no "answers"
• takes longer
• hard to become skilled at it
• hard to teach to others