Carotid Endarterectomy A Shared Decision Making Lost Opportunity

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Carotid Endarterectomy A Shared Decision Making
Lost Opportunity

• Ellen J. Reifler, MPH
• June 16, 2009

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Acknowledgements

• Pamela H. Wescott, MPP, FIMDM, Boston
• Charity Curtis, FIMDM, Boston
• Colin Nelson, FIMDM, Boston
• Ethan A. Halm, MD, MPH, Mount Sinai Hospital, NY

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When is CEA a Preference Sensitive Decision?

• Population is patients who are asymptomatic
• Diagnosed with Carotid Artery Stenosis
• Have not had a stroke or TIA (Transient Ischemic
  Attack) caused by carotid artery disease in the
  past 12 months

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Evidence

• There is about a 2 risk of stroke per year for
  people who are asymptomatic
• With CEA, there is 1 per year decrease in
  incidence of stroke, if you live for five years
  (6 )  in a setting where complication rate is 3
  or less
•  

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Evidence

• No evidence that CEA increases life span
• No evidence that CEA improves the quality of life
  (doesnt reduce fatigue, doesnt reduce
  dizziness, doesnt give you more energy)

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CEA Trade Offs

• There is a 3 chance that you will have a stroke
  within 30 days caused by surgery
• Theres a risk reduction of 6 if you live for
  five years (From about 12 to 6)
• Do you risk a stroke to prevent a stroke?

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Who We Found
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Demographics 11 Participants
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What Were They Thinking?

• If I dont have this surgery, I could have a
  stroke and die Its more serious if you have no
  symptoms because all of a sudden you drop dead,
  thats how it was explained to me (80 year old
  man)
• Theres a 98 percent chance I will have a
  stroke if I dont have the CEA (77 year old
  woman)

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• I needed to have something done but there was no
  discussion, no if, ands or buts. (90 year old
  man) Someone in the focus group responds, Do
  you want to live or do you want to die? and
  everyone agrees.
• The risk of surgery was real, but relatively
  small, certainly small in comparison to not doing
  anything(63 year old man)

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• If you get threatened with a stroke, do
  everything you can to avoid it (56 year old man
  who had stroke)
• I didnt think about the risk of surgery because
  Doctor X inspires confidence (88 year old
  woman) She was told by her doctor I have never
  operated on anyone your age but if I dont you
  could have a stroke in two years

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What Did We Learn?

• People with asymptomatic carotid stenosis usually
  do not realize that they have a treatment
  decision
• Some mistakenly believe that an imaging finding
  of carotid stenosis means that a disabling or
  life threatening stroke is imminent, that
  immediate intervention is necessarythat they are
  a ticking time bomb
• Many think all strokes are disabling

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What Did We Learn?

• Many overestimate their risk of stroke without
  surgery and underestimate the risks of an
  operation
• Some overestimate the benefits of surgery and
  mistakenly believe it will help them feel better
  (e.g. improve memory, vitality, fitness, and
  pain) and help them live longer.
• Most patients expect their doctor to tell them
  what to do

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Discussion

• Why are highly educated people, with excellent
  access to care and supportive family unaware that
  CEA is a decision?
• Death is scarythis disease sounds like it will
  kill you and kill you fast (ticking time bomb.)
• Strokes are scary---If it doesnt kill you, you
  risk a disabling stroke which (like cancer) is a
  condition that is feared more than heart disease
  

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Barriers to SDM

• SDM can not happen unless patients understand the
  basics of their condition
• SDM can not happen unless patients are presented
  with the risks and benefits of treatment
• SDM is harder when the stakes are high. It is
  easier to accept participating in decisions with
  your doctor when you dont feel time is of the
  essence and your life is at stake