Aligning Family-Team Expectations During Surgical Consent

About

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

Interns and Research Fellows

  • Pia Kuhlmann, Research Fellow
  • Gabriela Toutin Dias, Research Fellow
  • John Scott, Intern, Northeastern University
  • Andalyn Duke, Intern, Simmons College
  • Page Lewis, Intern, Simmons College
  • Zoe Harris, Intern, Northeastern University

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

Activities and Updates

May 2015-May 2016: Preparation

  • Conduct focus groups and interviews with parents
  • Conduct literature review
  • Make connections with involved departments (chiefs, champions)

May 2016-August 2016: Pre-Intervention Data Collection

  • Collect recordings of surgeons talking with parents about upcoming child’s surgery
  • Also collect post-recording surveys
  • Workshop development

September 2016-January 2017: Present Workshops

  • Conduct Pilot workshop and revise
  • Conduct workshops in Departments of General Surgery, Neurosurgery, and Urology
  • Follow-up “booster” session in staff meetings

February 2017-May 2017: Post-Intervention Data Collection

  • Collect recordings of surgeons talking with parents about upcoming child’s surgery (post-intervention data collection)
  • Also collect post-recording surveys
  • Analyze qualitative data
  • Prepare manuscripts for publication

Project Presentations to the Surgical Departments- May 2016

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.

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.

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 – April 2016

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.

First Parent Focus Group – March 2016

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.

‘Me and My Shadow’ – September 2015

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.

First Parent Focus Group- March 2016

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.

‘Me and My Shadow’– September 2015

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 – June 2015

Aligning 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.

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