Its Not Mad Cow Disease

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Its Not Mad Cow Disease
Presented by Peg OKeefe Director, Corporate
Communications Exempla Healthcare Denver,
Colorado Society for Healthcare Strategy and
Market Development Eighth Annual Education
Conference Hot Topics-T 16 September 4, 2003
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• What happens
• when a rare but always fatal
• infectious brain disorder
• is discovered in your hospital?

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Which ethical principles drive your
communications responsibility to the patients
when risk of transmission is theoretical only,
the onset perhaps 20 years out, and patients are
over 60 years of age?
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How do you handle communications to internal and
external audiences when the issue lends itself to
misunderstanding and sensationalism?
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Thus begins a saga with legal, ethical,
communications and professional implications
and results that include the development of a
policy distributed by the JCAHO as the national
standard.
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Creutzfeldt-Jakob Disease (CJD)

• Rare, fatal brain disorder
• Causes rapid, progressive dementia and
  neuromuscular disturbances
• Occurs in one in a million people a year

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Creutzfeldt-Jakob Disease (CJD)

• 85 cases occur sporadically--no known cause
• 5-15 of cases are inherited
• Can be transmitted through direct contact with
  infected neural tissue (human pituitary derived
  growth hormone, dura mater transplant)
• Two confirmed cases of transmission in mid-70s in
  France used stereotactic electrodes that were
  gas sterilized.

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Creutzfeldt-Jakob Disease (CJD)

• Cannot be transmitted by casual contact, blood or
  organ donation, only by the prions from a patient
  with CJD touching the nervous system tissue of
  another patient
• No diagnostic test nor treatment known at this
  time

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Creutzfeldt-Jakob Disease (CJD)

• Most scientists believe the transmissible agent
  is neither a virus nor previously known
  infectious agent, but rather an unconventional
  agent consisting of protein.
• Prion short for proteinaceous infectious
  particle

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Prions

• Transform normal, benign protein molecules into
  infectious, deadly ones by altering the shape of
  the healthy molecules
• Produce microscopic holes in the brain that
  appear sponge-like

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Suspected prion-caused diseases

• Animals
• Scrapie (sheep and goats)
• Chronic Wasting Disease (mule deer and elk)
• Bovine spongiform encephalopathy (mad cow disease)

• Humans
• Kuru
• Gerstmann-Straussler-Scheinker
• Familial insomnia

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What happened?
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The events

• Brain biopsy performed on a patient with symptoms
  of dementiasuspected diagnosis vasculitis
  (which is treatable)
• Hospital learns through pathology reports that
  the patient had CJD

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The hospital

• Contacts State Health Department and CDC
• Removes surgical instruments from service
• State-of-the-art tracking system in place
• Reviews sterilization practices
• Contacts other hospitals (locally and nationally)
  seeking practices and protocolsnone can be found

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Concerns

• Potential anxiety of patients exposed to
  instruments used during brain biopsy
• Physicians and employees concerns
• Public concern

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Procedure review

• Instrument tracking system in place was
  state-of-the art
• Sterile processing met or exceeded clinical
  standards
• Infection control for disposal issues in place
  and followed
• Reprocessing guidelines in place and followed

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Regulatory agency response

• Colorado Department of Public Health and
  Environment notified, consulted, invited to
  decision meetings
• Acted in advisory role
• No public health issues
• CDC Advisory
• NIH Advisory

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Communication challenges
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Internal Audiences

• Tools
• Fact Sheet
• Frequently Asked Questions
• Talking Points
• Responsibility Chart
• Tracking List

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Internal Audiences

• Nursing supervisors, Managers, Employees
• Inservice meetings, letters, talking points
• Messages
• No employees or physicians at risk
• Not mad cow disease
• You are our best source of information

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Internal Audiences

• Physicians/Medical Staff
• Coordination with Kaiser-Permanente
• Meeting with primary care physicians and
  neurosurgeons regarding the CJD notification
  process
• Medical Executive Committee

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Internal Audiences

• Hospital Board
• Foundation Board
• Volunteers

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Patients and Families

• Identify patients who were exposed to the
  surgical instrument sets
• Communicate with physicians
• Letter to patients scheduled for surgery

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Patients and Families

• Ethical principles
• Beneficence
• Autonomy
• Honesty
• Confidentiality

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Patients and Families

• Ethical dilemma
• Possible contact with CJD prions
• Potential benefits for patients
• Right to know
• Potential burdens
• Anxiety

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Patients and Families

• Helping physicians talk to patients
• Coordinate talking points with Kaiser Permanente
  communications staff
• On-going tracking

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When the story broke

• Television coverage
• Video clips
• Follow-up calls to correct misinformation
• Thank you letters

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When the story broke

• Print Coverage
• Editorial Boards
• Developing relationships
• Building local expertise

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JCAHO

• Letter of inquiry sent to hospital media knew
  before the letter was received
• Eventually published our findings in a Sentinel
  Alert to all hospitals
• National standard

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Lessons Learned
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Lessons learned

• Strategy and culture must be aligned
• Transparency is essential for dialogue
• Safety is a system property
• Leadership is essential
• Risk, fear and insecurity can be overcome

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Lessons learned

• Culture of Accountability
• Understanding not blame
• Partnership with physicians
• Internal relationships
• Accurate Information

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Lessons learned

• Power of Systems
• Instrument tracking
• Quick response of interdisciplinary teams
• Involvement of appropriate committees
• Communications at the table

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Lessons learned

• Value of Transparency
• Honest communications with patients
• Share lessons with other hospitals