Aligning Family-Team Expectations During Surgical Consent


Aligning Family-Team Expectations During Surgical Consent is a research project focused on helping surgeons improve their communication and relational skills during the surgical informed consent process.  Improved skills will lead to better-aligned surgical team and family expectations before the surgery takes place. This is key, because surgeons and patients/families often have misaligned expectations: a given outcome may be seen as a success by the surgeon, but a failure from the perspective of the patient and family.

The Institute for Professionalism and Ethical Practice received funding from Boston Children’s Hospital’s Program for Patient Safety and Quality Grants Program and CRICO (Controlled Risk Insurance Company) through their Patient Safety Risk Management Grants Program to focus on the issue of improved communication during surgical informed consent.

The core of this project is a series of workshops, one for each surgical specialty involved in the project (General Surgery, Neurosurgery, and Urology).  The workshops raise awareness about the role of communication, and will provide realistic enactments with professional actors and debriefing of cases with unaligned expectations and variable surgical outcomes. Surgeons also receive a “toolbox” of strategies to improve their communication and relational skills with patients and families.

Project work began in May 2015 and will continue until April 2017.

Meet the Team

BCH Family Advisory Council (FAC) Representatives to the Aligning Expectations Project

Additional team members who will be involved at various points during the project can be viewed here.

Activities and Updates

Project Presentations to the Surgical Departments 

survey clipboard
The Aligning Expectations project is poised to enter its next phase! After almost a year of preliminary research and preparation by the study team, co-PI Craig Lillehei recently presented the study to three key groups: surgeons in the departments of General Surgery, Neurosurgery, and Urology.

Dr. Lillehei opened his presentation outlining the study’s rationale: surgeons feel that they do a pretty good job explaining informed consent, and that families know what to expect before, during, and after surgery. What we have heard from families, however, can be different. Families report feeling overwhelmed by information during an emotional time. They can be surprised and unprepared for the post-op and recovery process. This leads to our study’s hypothesis: that the closer we can align the expectations of families and clinicians before surgery, the better the outcome will be, with less frustration and distress for families.

Dr. Lillehei then dove into the “nuts and bolts” of participation. We will start by collecting audio-recordings of surgical consultations in each of the three participating departments, with the permission of clinicians and families. We have developed a process to make this as easy as possible for both clinicians and families. After each surgical consultation, clinicians, families, and even children – if they are able – will complete a brief survey about their experience.  The information we gain from these recordings and surveys will be used this summer as we develop the educational workshops which will be presented to each of the three surgical departments in the fall. After the educational workshops are conducted, we will again collect audio-recordings of surgical consultations to discover if there is a difference in the way surgical staff communicate with families post-training.recorder

The presentations were well-received, and a number of interesting questions and comments arose from the participants. We are arranging similar presentations with the nurse practitioners from each of the three participating departments. We are looking forward to begin collecting audio-recordings and surveys in the next few weeks!

Presenting at the Patient Safety Forum 

Dr. Craig Lillehei, project Co-PI, presented on April 11 at the Massachusetts Coalition for the Prevention of Medical Errors Patient Safety Conference. Dr. Lillehei presented some of our initial findings based on our pilot and first parent focus groups. Our presentation was quite different from many of the other presentations that dealt with safety in more specific, clinical ways, such as preventing medication errors, for example. Instead, we presented the concept of how aligning expectations with families prior to surgery can help prevent dissatisfaction and unexpected outcomes. Attendees seemed interested in our preliminary findings, and we look forward to sharing more as our project progresses.

Project Champions  

Project leaders recently met with our project “champions” (formally known as Surgical Specialty Consultants) who include Dr. Scellig Stone, Neurosurgery; Dr. Caleb Nelson, Urology; and Dr. Terry Buchmiller, General Surgery (who, unfortunately, was unable to attend our first meeting). Our physician champions will help us tailor our research procedures and workshops for their particular specialty; will encourage their co-workers to participate in the project; and they will guide us moving forward. We already received important feedback on our research design and plans from our champions, and we now feel much more confident moving forward into the pre-intervention data collection portion of our project. In addition, we also have two nurse practitioner champions on the project: Ellen O’Donnell and Rosella Micalizzi, who both work in General Surgery.

Interim Project Report 

We wrote and submitted our interim project report to our funder, CRICO. The exercise of writing this report was a good opportunity to celebrate our many successes as well as to see where we could improve moving forward.  In addition, we asked for a four month modification of the period of the grant until April, 2017.

Proposal Amendment 

We wrote and submitted an amendment for the next phase of our project to the CHB IRB. This phase includes: recruiting surgeons, nurse practitioners, and other surgical staff at their respective staff meetings, and consenting them into the study;  pre-intervention data collection, during which surgeons and nurse practitioners will be recorded speaking to parents and children during surgical consultations in clinic; the intervention itself, which is a training workshop customized for General Surgery, Neurosurgery, and Urology, including live interactive role-plays with IPEP actors; and post-intervention data collection, which is identical to the pre-intervention data collection. We are hoping for a speedy approval of this amendment, so we can start implementing the next phase of our project very soon!

First Parent Focus Group

We convened on Saturday March 19. Though smaller in number than expected, the parents who attended provided an extraordinary amount of rich information. For example, we learned that these parents and their teenage children had very positive experience with most surgeons, although any negative experiences made an indelible impression;  they saw informed consent only as what is signed before surgery (a good learning point for us); they experienced problems after surgery, in recovery or afterwards;  they would like more information about “what to expect” after surgery,  as well as” tips and tricks” for dealing with aftercare issues; and they would like to be asked “how are you doing?” as a family. Additional focus groups, as well as individual interviews with parents, will be taking place soon.

IRB Approval 

The Aligning Expectations team has received wonderful news that the BCH IRB approved Phase I of our study: the parent focus groups. The parent focus groups are a key element of the project since parents’ experiences communicating with their surgeons about goals and expectations for surgery prior to surgery form the basis of this project. Only by learning more about parent experiences – both positive and negative – will we be able to develop a training for surgeons that is meaningful and useful. Recruitment for the parent focus groups will begin soon in the four participating surgical specialties (General Surgery, Neurosurgery, Orthopedics, and Urology), and we expect that the focus groups will take place early in January, 2016.

‘Me and My Shadow’

In our continued attempt to better understand the informed consent process before surgery, Aligning Expectations Project Manager Adena Cohen-Bearak, MEd, MPH shadowed Project Co-PI Craig Lillehei, MD for a morning on September 21st in the General Surgery Department at BCH. Adena was pleased that both patients and parents paid little attention to her, and she was able to observe the encounter fully and unobtrusively. She learned that:

  • Nurse practitioners play an integral role in the surgical consultations in General Surgery. They are the first provider to meet with the family, and they take a detailed medical history of the child, discuss the presenting problem, conduct a physical exam, and offer detailed information to the family as needed. They then present this information to the surgeon, and he/she conducts an examination as well. After the consultation, the surgeon and the NP again meet to decide on a future course of action (i.e. additional testing, waiting for a period of time to see what develops, etc.).
  • Not every consultation leads to surgery. In fact, neither of the two consultations Adena observed led to surgery at this point in time. Both families had some concerns about their child, and were gathering information about possible diagnoses and future courses of treatment.
  • Adena realized that it will be difficult to observe an actual informed consent conversation without sitting in on several surgical consultations. However, she will continue to shadow Dr. Lillehei and possibly other surgeons in the hopes of observing an informed consent conversation and a visit to the pre-op clinic.

Presentation to Boston Children’s Hospital Family Advisory Council 

Family-Advisory-CouncilAligning Family-Team Expectations during Surgical Consent Co-Principal Investigator Craig Lillehei, MD and Project Manager Adena Cohen-Bearak, MEd, MPH presented a brief but lively overview of the newly-CRICO-funded project to the hospital’s Family Advisory Council (FAC) on June 16, 2015. The purpose of the presentation was to introduce the group to the main goals of the project, and to invite parents who serve on the FAC to participate in various ways as the project rolls out. FAC members Brenda Allair and Serena Hadsell have already volunteered to help with focus group question development, curriculum development, and more, and other members seem eager to participate as well. An enthusiastic discussion ensued about the experiences of FAC members in which parents’ and surgeons’ expectations have not been well aligned both before and after surgery.

When does surgical consent actually take place? 

informed_consentAs study staff prepare for the Aligning Family-Team Expectations during Surgical Consent project, an interesting question has surfaced: when exactly does the informed consent process actually take place before surgery? In studying the issue at BCH, we have learned that there are at least three times that families and clinicians discuss the upcoming surgery: 1) during a consultation with the surgeon in the specialty clinic 2) in the pre-op clinic, and 3) right before surgery, in the pre-op area. While the actual informed consent form is typically signed in the pre-op area, the family and surgeon have discussed the surgery, potential outcomes, risks and benefits, and other information on multiple occasions. This brings to mind several important questions:  Is it clear to families that they are being given informed consent information if this is separated from the actual signing of the document? Do families receive the information they need and want? Is there a way to improve this process for families? We hope to discover the answers to some of these questions as we conduct our preliminary work.