New Research on Patient/Family Experience with Disclosure Programs

A research article recently appeared in JAMA Internal Medicine which reported on survey findings from patients and families who had experienced disclosure program following adverse medical events at three hospitals (Stanford Medical Center, Baystate Medical Center, and Beth Israel Deaconess Medical Center).   All three facilities have well-established disclosure programs.  The investigators also interviewed leadership and staff at these hospitals as part of their report.

In short, this research paper is a virtual treasure trove of intelligence for folks operating apology and disclosure programs. It is truly a must-read for any one interested in disclosure.  This investigation reinforces some ideas we've had all along, while introducing some new and important concepts.  Here is my list of highlights:

• Patients and families really want to be heard post-event.  They strongly desire for people to listen to their story. The study indicated that patients/families don't want to be interrupted or even have people take notes (interesting).  We've often said litigation is another way of saying, "I wasn't heard, well, now you will listen to me...now you will pay attention to me!"

• Consumers want the treating physician in the room no matter what...even if he/she is not a good communicator or is emotionally devastated.  Another interesting point.  Argues for more "Just in Time" training and sending trained, supportive colleagues to the meeting with the doc.  I still argue there are times when putting the impacted doc or nurse in the room initially could be a bad idea (if they truly are horrible communicators or emotionally devastated), but, for sure, at some point down the road the doc/nurse and family have to meet, no matter how difficult.  Both sides need such a meeting to heal and move forward with their lives.

• Attorneys are helpful to the process. Patients/families agreed being represented was helpful, including knowing the compensation was fair and also in dealing with their emotions.  Some consumers reported their attorney helped them understand the error was not intentional and actually helped them re-establish a medical relationship with the hospital!  Staff admitted (begrudgingly) that attorneys can help, especially with making sure everyone is treated right.  We have long recommended out reach to local counsel. This paper suggested communicating with local bar organizations to educate local PI attorneys about disclosure and develop a list of attorneys interested in representing families during a disclosure process.

• Compensation must be pro-active and humane.  Too many folks reported money wasn't discussed, or not discussed quick enough, or when it came to money the warm feelings of collaboration turned into a fight.  Stop it.  As one risk manager recently told me, the goal at the end of the compensation discussions should either be a handshake, or, better, a hug, and the best is a relationship with the family going forward.  We still have much work to do on the compensation piece of disclosure.  

• Knowing the hospital/nursing home will improve is very, very, very important, yet, many respondents in the study said they never heard what improvements were made, even when such communications were promised to them.  Patients and families want to know their suffering was not in vein --- show them you learned and improved!

  Here are some specific tips:

• Patients and families want disclosure meetings in private, quiet spaces.  No surprise here.

• It might not be wise for the first communication with the family to be from risk management.  Remember the Dennis Quaid story...risk managers met him in the lobby and it immediately put him and his wife on edge.  Same feelings were shared in this investigation.

• Don't say "resolution"...say "reconciliation" instead.  This is especially true if dealing with a death or permanent injury.  Patients/families reported the situation will never be completely "resolved" in those instances, but hurt feelings and emotions can be reconciled.  Words matter.

• Get kids involved.  Teenagers and even pre-teens do witness adverse medical events, they have feelings too, and they will also want to hear an apology and be involved in the process.

• Follow back with families...ask for their feedback about what they thought about the disclosure process.  Don't be afraid to ask what your organization can do to improve when in comes to disclosure.

  The punch line of the paper disclosure programs are mostly new and there is much room for growth and improvement.  Amen. 
  
  Sincerely,
  
  - Doug
  
  Doug Wojcieszak, Founder
  Sorry Works!
  618-559-8168
  doug@sorryworks.net