Aligning Expectations: Where We Started, Where We Are Now

by Adena Cohen-Bearak

Back in the spring of 2015, when our project team learned that our grant proposal for our new project Aligning Family-Team Expectations During Surgical Consent had been funded, we believed that surgical informed consent was a simple process. Our thinking went something like this:  a family would come to Boston Children’s Hospital, meet with a surgeon to discuss their child’s upcoming surgery, and the surgeon would describe the surgery, present the informed consent information to the family (risks, benefits, alternatives, etc.), answer any questions, and that would be it. Done. Finished. All the I’s dotted and the T’s crossed. Simple.

We decided to start our project by looking deeply into parents’ experience of surgical consultations by asking parents whose children had recently undergone surgery a series of questions:  What did they remember most about their discussion with the surgeon? What did they think of the way the surgeon spoke to them? Did they get the information they needed? And how about after the surgery? Was the recovery experience what they expected? Were their expectations aligned – and by that we meant, did the experience of the surgery mesh with what they expected what would happen?

Through this process, we realized that there was nothing simple about informed consent. Not only was informed consent not a simple, one-time conversation, it was actually a complex process that took place in many locations, with many participants, and still sometimes left families feeling confused.

No wonder it was difficult to align expectations between families and surgeons!

Though our initial exploration –  utilizing focus groups and interviews – was with a small number of parents, we found out many important things. Parents find the surgical consultation to be a very emotional event. They rarely remember everything that they heard in the discussion. Parents often don’t know what questions to ask, even though providers ask if they have questions. They feel that they need more information about the recovery process, and what possible complications might occur. They don’t know who to go to with questions. Parents do not really know what informed consent is  –  they see it as the form that they sign before surgery, and they pay it little heed.

We also looked into the literature about informed consent, and what we found fit with what we learned from parents. Research shows that patients only tend to absorb half of surgical informed consent information that they receive. Patients often give clues about their social and emotional concerns, but surgeons often miss the opportunity to acknowledge patients’ feelings. When a patient asks “is this something serious?” surgeons often revert to a comfortable response for them – biomedical inquiries –instead of expressing empathy or uncertainty. While surgeons excel in providing details about surgical conditions and approaches, the literature shows that surgeons could improve in their assessing of patients’ understanding, in discussing risks, and in discussing uncertainties.

These initial discoveries set the tone for the project, and have informed all our decisions moving forward. By basing our project on the actual experience of parents and families (backed up by relevant literature), we are able to offer surgeons and other surgical staff suggestions on ways to improve their communication with families prior to surgery that are immediately applicable and realistic.

Posted in Aligning Expectations

From the Viewpoint of a Research Assistant

By John Scott, IPEP Intern

John Scott, Co-op Intern

Being at the hospital with a sick child is never a parent’s idea of a good time. Add to that a complete stranger convincing you to take part in a study, and you can imagine how the parents may feel. But this isn’t any average study; we want to explore how surgeons communicate with families by recording the consultations our families invite us to be a part of. Expectations of medical procedures can vary greatly between physicians, patients, and their families. To understand why, you only have to consider the variety of factors that go into making a decision, such as the difficult process of deciding whether your child should undergo surgery. Making this decision, much the same as any other medical decision, is complicated by understanding the procedure, anticipating the outcome of the procedure, and figuring out what “improvement in your child’s condition” realistically looks like.

Obtaining informed consent to record the consultation is a small role in the grand scheme of the project, but in that moment, talking with the families, it felt like the most important. I’ve seen this talk happen several times, yet I can’t help but feel my heart racing while I wait for the family to settle into their seat where in a few moments it will be my turn to speak with the family. I’ve prepared my speech, went over what I plan to say in my head several times, and even had a checklist of items I needed to cover if, for some reason, I lost my place. Even with all this preparation, I can’t help but feel anxious when I approach any family.

I spoke with one father both before and after their appointment after I obtained his consent to be in the study. It had been a journey to get his child in to see the doctor, which began at least a year prior to our conversation. He was the textbook example of being an advocate and champion for your child. I heard his story, understood the reasons why he kept pursuing different opinions, and finally saw that he was pleased with his visit and the care that his child would be receiving. We spoke for a short while before they left for some final tests and then for their home several hours away. The last thing I remember I told him was “you’ve done everything for your child, you were his advocate and pushed to make sure he received the care he deserves, and I would be lucky to have someone on my side like you”.

Posted in Aligning Expectations

Elizabeth A. Rider, MSW, MD, Honored by European Society for Person Centered Healthcare

Elizabeth Rider, MSW, MD

Congratulations to Boston Children’s own Elizabeth Rider, MSW, MD, who was recently awarded the 2016 Platinum Medal for Excellence in Person Centered Healthcare by the European Society for Person Centered Healthcare (ESPCH). Rider was selected from a pool of 397 nominations to receive the award, which recognizes excellence in person-centered health care advocacy, scholarship, research and teaching.

Rider is a member of the Division of General Pediatrics and the director of Academic Programs for the Institute for Professionalism & Ethical Practice (IPEP), where she creates and directs programs to enhance the relational skills and professionalism of health care leaders, faculty, trainees and clinicians. She is a founder of and currently directs Boston Children’s and Harvard Medical School’s first Faculty Education Fellowship in Medical Humanism and Professionalism and the first Faculty Fellowship for Leaders in Collaborative and Humanistic Interprofessional Education.

In addition to her work at Boston Children’s, Rider caught ESPCH’s attention for her leadership of the International Charter for Human Values in Healthcare. The Charter is an interprofessional collaborative of individuals, organizations and institutions around the world working to restore human values to health care including Compassion, Commitment to Excellence and Justice in Healthcare.

When ESPCH President and Chairman of Council Sir Jonathan Asbridge, DSc, presented the award to Rider at the organization’s annual conference in London, he acknowledged the Charter as a “major contribution to the development of more person-centered healthcare system globally.”

ESPCH is not first to recognize Rider’s work. In 2009, Boston Children’s named her Community Pediatrician of the Year for her work at the hospital and in the community. And in 2012, she received the National Academies of Practice’s Nicholas Cummings Award, a national award for extraordinary contributions to interprofessional health care education and practice.

Posted in IPEP Team

Aligning Expectations between General Surgery and the PreOp Family

By Adena Cohen-Bearak, IPEP Project Manager

As the sun rose on a cold November morning of this year, twenty surgeons and three nurse practitioners from the Department of General Surgery at Boston Children’s Hospital gathered with Aligning Family-Team Expectations during Surgical Consent faculty and staff at a workshop developed by the Institute of Professionalism and Ethical Practice (IPEP). At the state-of-the-art BCH Simulation headquarters, IPEP’s Director of Patient Safety and Quality Initiatives Sigall Bell, MD took on the role of lead facilitator. The rest of the stellar faculty and facilitators included Craig Lillehei, MD, Adena Cohen-Bearak, M.Ed., MPH, Pam Varrin, PhD, Lisa Burgess, and Lauren Mednick, PhD. The workshop case enactment, which featured IPEP veteran actors Lewis Wheeler and Susan Lombardi-Verticelli as the case’s child “Max Miller’s” fictitious parents, was particularly engaging to this group, and workshop faculty allowed extra time for the debrief of a very complex surgical consultation.

In their post-workshop evaluations, many participants described their appreciation of the importance of increasing their family focus during surgical consultations. When asked about the most valuable thing they learned, participants reported learning how to relay information to the family, communicating with children, and learning multiple ways to recognize family emotions and establish connections. When asked about what they might do differently in the future based on their learning in the workshop, participants reported:

• (Changing their) tone with families
• Trying to make a personal connection with families
• Recognizing/addressing parents’ and patients’ emotions
• Asking the family for their baseline level of understanding

Workshop faculty also commented positively on the experience: “Thanks to the actors for not only a stellar performance,” commented Dr. Sigall Bell, “but also, as always, delivering the key take homes with ease and power.” Lisa Burgess, a BCH parent and FAC rep, commented: ”What an amazing day! This IS history in the making. Thank you all for all you are doing to make this work happen! It is a true privilege to be a part of this team.”

IPEP is in the process of scheduling the last workshop with the Department of Neurosurgery to take place in January 2017. This work has been made possible through a generous grant by CRICO’s Patient Safety Risk Management Grants Program.

Posted in Aligning Expectations Tagged with:


ENRICH Healthcare Communication Course:

“Connecting Across Differences-Relational Skills for Thriving in a Changing Healthcare Environment” 






June 8-11, 2016, Los Angeles, CA
Offered by the American Academy on Communication in Health Care 

ENRICH is an intensive and learner-centered course on communication in healthcare featuring, interactive workshops, communication skills practice, small learning groups, and dynamic keynote speakers. Activities are designed to enhance knowledge, skills and personal awareness needed to practice and teach relationship-centered communication. Participants choose individual and collective objectives and develop a means of achieving them with the guidance of seasoned AACH faculty.

By the end of this course, participants will be able to:

  1. Demonstrate relationship-centered communication skills for difficult conversations with patients and colleagues.
  2. Describe personal awareness skills and reflective practices that will allow them to stay in connection in the face of differences that trigger strong emotions.
  3. Effectively address organizational factors, which undermine relationship-centered communication.


January 2017- Registration Opens
February 13, 2017- Scholarship Application Deadline
Late February 2017- Scholarship Winner Notification
March 31, 2017- Early Bird Deadline

For more info, click here.

Posted in Conferences

Writing Collaborative Book Group on January 24, 2017

Join us for the next IPEP’s Writing Collaborative’s book group to discuss:

by Dr. Danielle Ofri

“Rich and deeply insightful. . . .A fascinating journey into the heart and mind of a physician struggling to do the best for her patients while navigating an imperfect health care system.”  – Boston Globe

Tuesday, January 24, 2017
12 noon – 1:00 pm
Landmark Building, 5th Floor
Louisburg Square Conference Room LM 5096
401 Park Drive, Boston, MA 02215

Bring your brown bag lunch.

Please RSVP by contacting:
Emma Forman or Donna Luff

Posted in Book Discussion, Writing Collaborative Tagged with:

IPEP Represented at the International Conference on Physician Health: Increasing Joy in Medicine

IPEP Represented at the International Conference on Physician Health: Increasing Joy in Medicine

The International Conference on Physician Health (ICPH): Increasing Joy in Medicine is a collaborative conference of the American Medical Association (AMA), Canadian Medical Association (CMA) and British Medical Association (BMA). Held every other year, the conference was in Boston on September 18 – 20, 2016.

Highlights on our involvement included:
Elizabeth A. Rider, MSW, MD presented an oral, “Fostering Caring Organizational Cultures: Faculty Education Fellowship in Medical Humanism and Professionalism” on the Faculty Education Fellowship. The presentation, coauthored with Dr. William Branch, Jr. of Emory University School of Medicine, discussed faculty development aimed at creating more humanistic organizational cultures and learning environments by training faculty members committed to humanistic values.

Elizabeth also presented three collaborative posters including:

1. “How Do Clinicians Manage Emotions During Difficult Healthcare Conversations? Implications for Training” [LINK: see Donna for copy]with IPEP faculty and associates Donna Luff, PhD, Kelsey Mills, Elliott B. Martin Jr., M., Natalia M. Mazzola, Dipl-Kffr, and Elaine C. Meyer, PhD, RN.

2.”Humanizing Medicine through Attention to Values: A Framework for Implementation”
on the International Charter for Human Values in Healthcare, with which IPEP is a Partner. International co-authors included: Elizabeth A. Rider, MSW, MD, Suzanne Kurtz, PhD, Diana Slade, PhD, William T. Branch, Jr., MD, E. Angela Chan, PhD, RN, H. Esterbrook Longmaid, III, MD, Dorothy Jones, BMBS, Dip RACOG, Phillip Della, RN, PhD, FACN, Roger Dunston, PhD, Jack Pun Kwok Hung, BSc (Hons), MA, and Christian MIM Matthiessen, PhD.

3. “”It Sustains Me”: How Physicians Draw Satisfaction and Overcome Barriers in their Practices” with Amy Weil, MD, Lars Osterberg, MD, and William T. Branch, Jr, MD.

Posted in Conferences

Aligning Expectations Rolls Out Workshop to BCH Department of Urology

5thingsAfter successfully piloting the Aligning Expectations workshop last month, project staff and faculty were excited to present the refined version of the workshop to the surgeons and nurse practitioners of the Department of Urology at BCH. On Wednesday evening, November 2 at 5:30 pm, 10 surgeons and 2 nurse practitioners grabbed their boxed dinners and joined the workshop faculty for the two-hour educational event. The workshop went beautifully, and participants were enthusiastic in their participation with all elements of the workshop, from didactic pieces, to group discussions, to enactments.

A review of the workshop evaluations reflected the enthusiasm felt in the room by staff and participants. For example, when asked about what was the most valuable thing they learned, one participant wrote “(learning about) the great variability in parent/patient understanding of consent process.” Another remarked, “How uncertain/anxious families are.”

When asked what they might do differently in a future surgical encounter based on today’s session, several participants indicated that they would give more time to the surgical consent process, and many participants said they would use of drawings. These responses represent key learning objectives for the workshop. In addition, when asked for workshop suggestions, several participants indicated that they would have liked the workshop to be longer, an exciting prospect for all involved.

Aligning Expectations staff will present the next workshop to the Department of General Surgery on the morning of Wednesday, November 23.

Posted in Aligning Expectations

World-Wide Response to Online Disclosure & Apology Course

IPEP’s online Disclosure and Apology Course continues to attract new learners, including a growing number of international participants. At our last Moderated Online Workshop, held on September 20th, we were delighted to work with participants from 13 different states across the US and 5 other countries: Canada, Mexico, Peru, Romania, and Israel. The course also continues to attract an interdisciplinary group of professionals-in the September workshop.This included physicians, nurses, social workers, psychologists, child life specialists, risk managers and administrators. The diversity of perspectives and experience that this mix of participants bring to these online workshops tremendously enriches the learning for all.
Don’t miss our next Moderated Online Workshop on
December 8th, that will be led by:

Robert Truog, MD, MA, FCCM, Frances Glessner Lee Professor of Medical Ethics, Anesthesia, & Pediatrics; Director, Center for Bioethics, Harvard Medical School Executive Director, Institute for Professionalism & Ethical Practice; and, Senior Associate in Critical Care Medicine, Boston Children’s Hospital.
David Browning, MSW, LICSW, Senior Scholar and Co-Founder, Institute for Professionalism and Ethical Practice, Boston Children’s Hospital.
Posted in Disclosure and Apology

Five Questions with Robert Truog, MD

IPEP’s Executive Director, Robert Truog, MD, was recently interviewed by the Betsy Lehman Center about the challenges of apology and resolution after medical error and adverse events. In answer to five questions posed by the Center, Dr. Truog highlighted important issues for clinicians to consider when faced with disclosure and Dr. Robert Truogapology to patients and families, including:
  • The power of authenticity;
  • Communicating only known facts;
  • The different meanings of “I’m sorry;”
  • The context in which an error or adverse event occurs; and,
  • The fundamental need to move past self-interest to do the right thing even when it’s not obvious that doing so will be beneficial for the clinician.

Dr. Truog also stressed the value of institutional coaches to support clinicians as they prepare for these conversations. Finally, the interview showcased the work that IPEP has done with Atrius Health on bringing apology and resolution to ambulatory settings. You can read the full interview with Dr. Truog here.

To explore the issues Robert Truog raised in more depth, please also visit IPEP’s online Disclosure and Apology course, for which he served as content expert and course guide. Later this month, Dr. Truog and Donna Luff, PhD, the Project Leader for the onlineDisclosure and Apology course, will participate in a round-table on Public Engagement on Patient Safety hosted by the Betsy Lehman Center. We look forward to reports from that event!
Posted in Disclosure and Apology, IPEP Team, Robert Truog