“Doctor, What Do You Think We Should Do?”

Parent Requests for Physician Recommendations

During Prenatal Counseling

“Doctor, What Do You Think We Should Do?”

Parent Requests for Physician Recommendations

During Prenatal Counseling

Renee D. Boss, MD MHSAssistant Professor, Division of NeonatologyFellow, Berman Institute of BioethicsJohns Hopkins School of Medicine

Background- Decision-MakingBackground- Decision-Making

• Clinician-parent collaboration underlies medical decision-making for extremely premature infants.

• Few parents want to make decisions alone. Most want physician guidance; some prefer physicians make decisions.

• Clinicians may vary in their comfort with providing recommendations to families who ask,

“Doctor, what do you think we should do?”

Background- MethodologyBackground- Methodology

• Surveys, interviews are retrospective, hypothetical, impacted by memory, emotion, social desirability

• Empirical observation of prenatal counseling difficult:

- Patient burden

- Clinician reluctance

- Logistical complexity

• High-fidelity simulation used to teach, study difficult conversations

- Can it be used in neonatology?

Specific AimsSpecific Aims

• Determine whether high-fidelity simulation achieves clinical verisimilitude in the context of prenatal counseling

• Explore process of prenatal counseling for imminent, extremely premature labor

• Describe neonatologists’ responses to parents’ request for directive counseling

MethodsMethods

• Pilot study at single academic referral center

• All study activities occurred in Simulation Center

• Professional Standardized Patients (SP’s) trained to act as couple in labor

- No previous experience with prematurity- No prior counseling

• Neonatologists asked to counsel family

• Simulated encounters videotaped

• Physicians completed post-encounter survey and debriefing interview

The Case – Clinical DataThe Case – Clinical Data

• 30yo female P0010 and boyfriend just transferred by helicopter for PPROM at 23 2/7 wks

• Mother in good health, adequate prenatal care

• FHx: paternal cousin with Trisomy 21

• Received BMZ x1 and indomethacin before transport

• On arrival, she is contracting with cervical changes; OB suspects mother will deliver today

• EFW 550gr

The Case – SP scriptingThe Case – SP scripting

• SP’s followed response principles; responses to common questions scripted

• Extensive SP background story developed:• Unmarried couple, 3 year relationship, unplanned pregnancy• Some family support• Catholic• No prior experience with end of life decision-making• Do not want a disabled child

• Every encounter included SP prompt, “Doctor, what do you think we should do?”

ResultsResults

• 10/20 physicians participated (6 attendings, 4 fellows)• 80% female• Median age 40 yrs (range 30-63 yrs)

• Clinical Verisimilitude:• 100% thought simulation realistic• 100% reported engaging in “usual” counseling behaviors

ResultsResults

• Decision-making Process:• 7/10 MD’s believed parents wanted little/ no participation in

decision-making• 4/10 MD’s asked parents about experience/ values related to

disability• 2/10 MD’s made early recommendations

• When asked, “Doctor, what do you think we should do?”• 2/8 made recommendations• 6/8 told parents they couldn’t make recommendations

• All 6 later reported feeling >75% sure what should be done for infant in DR

Results- DebriefingsResults- Debriefings

• “What do you wish might have been different about the decision-making process with this family?”

• “I wish they could have been less emotional and more focused on what they needed to know to make a decision.”

• “I should have gotten a more definitive answer from them about their wishes before I left the room.”

• “I wish the family had taken more ownership of the decision-making process.”

ConclusionsConclusions

• In this pilot study, a minority of neonatologists provided recommendations for delivery room management to parents who asked directly for them

• MD reluctance to recommend was not related to uncertainty about optimal management

• MD’s often uncomfortable making recommendations

• Decision-making generally followed an informative model: MD provides information, parent decides

Future DirectionsFuture Directions

• Empirical observation of prenatal counseling, decision-making in context of extreme prematurity

• Explore MD training, experience in acting as surrogate decision-makers

• Explore relationship between physician reluctance to make recommendations and parent decisional regret

Questions?Questions?