Patient Experience, Patient Engagement: What does it mean?

by Adena Cohen-Bearak, M.Ed., MPH- Project Manager

“Patient experience” is one of the latest buzzwords now being used in countless articles, initiatives, and websites. But what does it actually mean?

According to the Agency for Healthcare Research and Quality (AHRQ), “patient experience encompasses the range of interactions that patients have with the health care system, including their care from health plans, and from doctors, nurses, and staff in hospitals, physician practices, and other healthcare facilities.”

Another definition is offered by The Beryl Institute, which describes itself as “the global community of practice dedicated to improving the patient experience through collaboration and shared knowledge.” The Beryl Institute describes the patient experience “as the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.”

But exactly what interactions matter to patients? Press Ganey Associates, an organization that collects data from hospital patients and uses this data to improve patient experience, discovered that quality of care, clinician teamwork and care coordination, and empathy are the top patient experience factors in their analyses.

“Patient engagement” is another buzzword that is commonly used these days, but sometimes defies meaning.

“The concept of patient engagement can be defined as the desire and capability to actively choose to participate in care in a way uniquely appropriate to the individual in cooperation with a healthcare provider or institution for the purposes of maximizing outcomes or experiences of care,” report researchers from Columbia University School of Nursing and Mailman School of Public Health in a literature review of the topic.

These researchers described four common themes in the literature on patient engagement:

  • personalization
  • access to necessary resources
  • commitment to delivering quality care
  • building a positive patient-provider relationship

While access resources and quality of care are vital, two of the patient engagement themes discovered – personalization and building a positive patient-provider relationship –  are factors that can only be enhanced by improved communication and relational skills. That is exactly the work that we do here at the Institute for Professionalism and Ethical Practice (IPEP).

At IPEP, when we use the term “patient engagement”, we mean that patients and families are involved in our work – workshops and projects that enhance communication between patients, families, and clinicians – at every level, from planning to implementation, through evaluation.

For example, in the Aligning Family-Team Expectations During Surgical Consent project, our initial work involved focus groups and interviews with parents of recent surgical patients. The concerns of these parents informed the direction of the training that was ultimately delivered to surgeons in order to improve surgeon’s skill and effectiveness when talking with families prior to their child’s surgery.

Looking toward the near future, IPEP plans to “engage” families even more by offering communication training that will enhance the effectiveness of the way families communicate with clinicians. Empowering parents to express their concerns, to ask clinicians to slow down or to clarify, or to request more information about recovery times are some of the issues that may be addressed in future workshops planned for families.


Adena Cohen-Bearak is a Masters-level public health researcher with over twelve years’ experience coordinating research projects, conducting program evaluations, and specializing in qualitative research, with an additional thirteen years’ experience working in health education. After receiving her Masters of Public Health in 1999 from Boston University, she shifted her focus from health education to public health research. For the past twelve plus years, she has worked on several research projects, including: a qualitative evaluation of The School Health Index, designed to help schools improve nutrition and physical activity in students (Harvard School of Public Health); a quantitative study testing a novel telephone-based approach to improving hypertension in low-income African American adults (Boston Medical Center); and a 3-phase project on improving end-of-life care for children who die in the pediatric ICU (Education Development Center. At Harvard Catalyst/Harvard Medical School, she worked on a wide variety of population health issues ranging from childhood obesity to Hepatitis C. There, she focused on developing community-informed, evidence-based research projects to address challenging public health issues. Most recently, she has served as a consultant on several qualitative research and writing projects.

Posted in Aligning Expectations

Learning from the Master: Fostering Humanistic Learning Environments and Reducing Burnout

by Elizabeth Rider, MSW, MD, Director of Academic Programs at the Institute for Professionalism and Ethical Practice

Learning environments and organizational cultures strongly influence the professional identity formation of trainees, the well-being of faculty members, ways in which healthcare professionals relate to one another and to their patients and, ultimately, the quality of care they can provide. Organizational culture also significantly impacts patients’ and families’ experience of care, patient safety, medical error, patient and physician satisfaction, and clinician burnout.1

Dr. Branch with Faculty Fellows

Currently, over half of US physicians now experience professional burnout,2 and burnout is almost twice as prevalent in US physicians compared to workers in other fields.  A high prevalence of burnout and depression also exists in medical students and residents. Similarly, studies of nurses show a high frequency of burnout and depression.

Research shows that organizational aspects play an important role in the development of burnout among clinicians which, in turn, impacts healthcare professionals’ capacity to practice humanistically. This then can affect patient experience and quality of care.1 Disparate personal and health system values along with work overload contribute significantly to physician burnout. Similarly, moral distress is a significant factor in burnout in nurses. Humanistic practice may help to mitigate burnout.

At the Institute for Professionalism and Ethical Practice at Boston Children’s Hospital (BCH), we have developed and implemented two faculty fellowships: (1) the Faculty Education Fellowship in Medical Humanism and Professionalism3 and (2) the Faculty Fellowship for Leaders in Collaborative and Humanistic Interprofessional Education.4  The fellowships aim to improve faculty teaching effectiveness and role modeling in humanism and professionalism; to enhance reflective capacities; and to nurture those physicians and clinicians who already use humanistic practices to serve as positive influences on learning environments and organizational culture in these areas. In addition, the second faculty fellowship is designed to build enduring, trusting relationships among interprofessional education (IPE) faculty leaders, and to enhance their capacity to serve as collaborative role models to educate others about IPE and interprofessional practice. To date, thirty-two faculty have participated in the fellowships.

At BCH—part of a multi-institutional national project to develop curricula for the teaching of humanism and professionalism—we also created the faculty fellowships, adapted curricula for pediatrics, and created new curricula on values based on the International Charter for Human Values in Healthcare.5

“Our values are like roots. They hold us upright when they are present and can cause us to fall when they are absent or decay.” – Faculty Fellow

IPEP Visiting Professor for the Fellowships

William T. Branch, Jr., MD, MACP

William T. Branch, Jr., MD, MACP, Carter Smith, Sr. Professor of Medicine at Emory University School of Medicine, and Director and PI of the national “Passing the Torch: Fostering Medical Humanism Through Faculty Role Models” faculty development project, recently came to Boston Children’s Hospital as a visiting professor for the faculty fellowships. Dr. Branch is an internationally recognized expert on medical humanism and professionalism, and a leader and innovator in medical education.

Before moving to Emory University School of Medicine where he was the Director of the Division of General Internal Medicine for many years, Dr. Branch founded the Primary Care Residency at the Brigham and Women’s Hospital in 1974, among the first primary care residency programs, was a key leader of the New Pathway project at Harvard Medical School, and was instrumental in creating the Patient-Doctor III course at Harvard Medical School.

Hosted by IPEP, Dr. Branch spoke with enthusiastic audiences during several special events detailed below.

  1. Words Create Worlds: Appreciative Inquiry Narratives of Highly Humanistic Clinicians
    [Special session for Faculty Education and Faculty Interprofessional Education Leadership Fellows with Dr. Branch]

Dr. Branch and the Interprofessional Education fellows had a lively discussion about how professional growth occurs and how to facilitate reflection as a means for professional formation. They explored the 3-step process of reflection-in-action, action, and reflection-on-action, and the use of these to gain wisdom. They also considered learning environments that foster such reflection and how the fellows can establish such environments.

  1. Fostering Humanistic Culture
    [Department of Medical Education lunch and discussion]

An interprofessional group comprised of BCH Academy leadership and members, program directors, and other education leaders considered ways to encourage and foster more humanistic organizational culture and interprofessional, safe learning environments.

Discussion topics included moral development and enhancing values, the creation of good learning environments where learners can reach their full potential, role modeling, reflection, and feedback. The hope is that continued teaching of “the human side of medicine” in small groups, using a longitudinal curriculum that develops the small group process, will eventually lead to a critical mass of faculty members, administrators, staff and trainees committed to humanistic values and to demonstrating these in learning and clinical care environments.

  1. Healthcare at the Crossroads: Maintaining Values, Meaning, and Resilience in Today’s Healthcare Environment
    [BCH community-wide event; also included Faculty Fellows, Harvard Medical School faculty, graduate students and others.]

“There is nothing to replace the human interaction.”  –William Branch, Jr, MD, MACP

This lively event served as the launch of the Faculty Fellows Humanism Series–Cultivating Humanism: Nurturing a Culture for Safe, Compassionate Healthcare.

Dr. Branch presented findings from our national multi-site research study on promoters and barriers of humanistic practice,6,7 organizational culture, burnout, and resilience. The audience learned about stages of professional identity formation, ethics embedded in clinical practice, and the approaching crisis in the organizational culture of humanistic teaching and practice in today’s healthcare environment.

Dr. Branch noted that we have before us a “tremendous opportunity to change the culture by relating to each other as human beings.”

Faculty Fellows Humanism Series

The Faculty Fellows Humanism Series is designed to nurture values and to foster humanistic organizational cultures and learning environments. It is a project of the Boston Children’s Hospital Institute for Professionalism & Ethical Practice/ Harvard Faculty Education Fellowships.  Join us for our Humanism Series of seminars and workshops designed to teach broad aspects of humanism and values.1 Find out more here.

Applications for the next cohort of Faculty Interprofessional Education Leadership Fellows will be available soon. Preliminary information can be found here.

Faculty fellowships are supported, in part, by a multi-institutional grant from the Josiah Macy, Jr. Foundation (Dr. Branch as PI; Dr. Rider as site PI.).

© 2017 Elizabeth A. Rider, MSW, MD


Elizabeth Rider, MSW, MD is the Director of Academic Programs for the Institute for Professionalism & Ethical Practice, and member of the Division of General Pediatrics at Boston Children’s Hospital, Harvard Medical School. She creates and directs local and international programs to enhance relational and communication skills and professionalism for healthcare leaders, faculty, and trainees. She founded and directs Boston Children’s Hospital/Harvard Medical School’s Faculty Education Fellowship in Medical Humanism and Professionalism, and the first Faculty Fellowship for Leaders in Collaborative and Humanistic Interprofessional Education. Dr. Rider brings her dual background as a physician and former child/family therapist (LICSW) to her leadership, teaching, and clinical roles. She is the recipient of the Platinum Medal from the European Society for Person Centered Healthcare, and the Nicholas Cummings Award from National Academies of Practice for “extraordinary contributions to interprofessional healthcare education and practice.”


Fellowship sponsors include
The Institute for Professionalism and Ethical Practice and Boston Children’s Hospital Department of Medical Education; co-sponsors include BCH’s Academy for Teaching and Educational Innovation and Scholarship, Office of Faculty Development, Office of Graduate Medical Education, Nursing/Patient Care at BCH, BCH Department of Social Work, MGH Institute of Health Professions, and The International Charter for Human Values in Healthcare.

For further reading: 

  1. Montgomery A, Todorova I, Baban A, Panagopoulou E. Improving quality and safety in the hospital: The link between organizational culture, burnout, and quality of care. British Journal of Health Psychology 2013;18:656-662. DOI:10.1111/bjhp.12045.
  2. Shanafelt TD, Hasan O, Dyrbye LN, et al. Changes in Burnout and Satisfaction With Work-Life Balance in Physicians and the General US Working Population Between 2011 and 2014. Mayo Clinic Proc. 2015;90 (12):1600-1613.
  3. Faculty Education Fellowship in Medical Humanism and Professionalism website. 2014. Available at: http://ipepweb.org/the-faculty-education-fellowship-in-medical-humanism-and-professionalism/
  4. Faculty Fellowship for Leaders in Collaborative and Humanistic Interprofessional Education website. 2016. Available at: http://ipepweb.org/faculty-fellowship-interprofessional/
  5. Rider EA, Kurtz S, Slade D, Longmaid III HE, Ho M-J, Pun JKH, Eggins S, Branch Jr WT. The International Charter for Human Values in Healthcare: An interprofessional global collaboration to enhance values and communication in healthcare. Patient Educ Couns 2014;96:273-280. Also available at: http://dx.doi.org/10.1016/j.pec.2014.06.017
  6. Branch WT Jr, Weil AB, Gilligan MC, Litzelman DK, Hafler JP, Plews-Ogan M, Rider EA, Osterberg LG, Dunne D, Derse AR, Pittman JR, Frankel RM. How physicians draw satisfaction and overcome barriers in their practices: “It sustains me”, Patient Educ Couns. 2017 Jun 8. http://dx.doi.org/10.1016/j.pec.2017.06.004  [Epub ahead of print]
  7. Branch WT Jr, Frankel RM, Hafler JP, Weil AB, Gilligan MC, Litzelman DK, Plews-Ogan M, Rider EA, Osterberg LG, Dunne D, Derse AR, May NB. A Multi-Institutional Longitudinal Faculty Development Program in Humanism Supports the Professional Development of Faculty Teachers. Academic Medicine In press.
Posted in Physician Burnout

Tips for Preparing Children and Caregivers for Medical Procedures

by Lauren Mednick, PhD

Effective preparation of children for medical procedures can have both short and long-term benefits. Children who have accurate expectations of what they will experience are likely to cope more effectively, experience less anxiety, and be more cooperative. Further, decreased anxiety before a procedure may decrease the child’s report of pain, analgesic consumptions, emergence of delirium, and sleep problems. Finally, positive medical experience as a child may influence future anxiety, pain, and coping with medical encounters. Despite these potential benefits, preparation for medical interventions is typically aimed at the child’s caregivers through informed consent discussions. Although all children need to be informed about what to expect both before and after a medical procedure, what details to tell a child and when require thoughtful consideration. Here are some tips for including children in these important discussions:

Tip 1: Explain What Sensations They will Experience

Children want to know what they will feel, see, hear, smell, and taste both before and after the procedure.  If the child will be asleep during the procedure, they do not need to hear details about what will happen during this time.

Tip 2: Be Honest

If children are given information that turns out not to be true, they are likely to develop a distrustful relationship with their parents and/or the medical team that may negatively affect future interactions.

Tip 3: Use Simple, Non-Threatening Language

For example, instead of saying “the doctor will give you some dye in your IV”, you might say “the doctor will give you some medicine in the tube in your arm that will help her be able to see your ____ more clearly.”

Tip 4: Be Certain to Include Details about What Equipment the Child May Wake Up With

For example, if the child will wake up with an IV (“tube in your hand”) or foley (“tube in your penis”).  Also, provide information about when these things are likely to be removed.

Tip 5: Tell the Child How They Might Feel Immediately after the Procedure and Throughout Recovery

Be sure to provide choices and soften language (e.g., don’t say hurt or pain).  You can say for example, “Some kids say their leg feels sore and some say it feels funny.  Others say the medicine helps them not feel much at all.  You can tell me how it feels for you.”

Tip 6:  Include What the Procedure Site Might Look Like

Include details such as if there will be swelling, bandages, blood, or color change.

Tip 7: Timing

In general, younger children do best when told 1-2 days before the procedure, school-age children do best with having these conversations about a week before the procedure, and adolescents do best when involved in treatment planning as it occurs.


Lauren Mednick, PhD is a clinical psychologist in the Department of Psychiatry at Boston Children’s Hospital and an Assistant Professor in the Department of Psychiatry at Harvard Medical School.  She is the clinical director of the Outpatient Psychiatry Service, as well as the director of the Medical Coping Clinic.  Her clinical time is devoted to helping patients and families learn skills to promote healthy coping with medical conditions.  Prior to becoming a psychologist, Lauren worked as a certified child life specialist.  Thus, she is most passionate about helping prepare children for medical procedures, as well as teaching clinicians about this topic.

Posted in Aligning Expectations

Clinicians Must Care for Themselves, as well as Their Patients

by Adena Cohen-Bearak, MEd, MPH

“I love being a doctor. It’s what I always wanted to do, this work so rich in content and even richer in meaning. There is gratitude, comfort and undeniable privilege,” states Ranjana Srivastava, an oncologist who has practiced medicine in Australia for the past 20 years

She continues:  “Still, on many days I feel emotionally barren, fearing that the day has just begun and I have nothing left to give.”

In her recent article Doctors and nurses must find compassion for themselves, not just their patients published in The Guardian, Srivastava describes her dilemma. During her typical workday, she rushes from patient to patient, from crisis to crisis, with little time to reflect or rest. What does she do about a refugee patient with a failing liver who desperately wants to see his family one last time? How does she talk with the husband of a beloved patient who is now in hospice and dying?

She faces competing demands at every turn, each of which is emotional and heartbreaking; together almost impossible to bear.  Yet this is the norm among many healthcare professionals today. Srivastava describes it as “an epidemic of silent suffering.”

While  the term “self-care” has become overused lately, it is essential for physicians and nurses, as well as other health care professionals, to learn how to take care of themselves. This may include taking more time off; delegating responsibilities to others; scheduling time for breaks and relaxation during the workday;  making time for training and workshops;  and creating opportunities to share challenges with co-workers to create a culture of support.

One aspect of self-care is learning how to better communicate with patients and co-workers. Our IPEP Difficult Conversations workshops provide strategies and practice for clinicians experiencing stress due to emotions experienced during challenging conversations. In addition, our PERCS Rounds offer bi-monthly opportunities for hospital staff to discuss everyday challenges in a supportive atmosphere.

“Changing the culture of medicine needs many actions but I think one that each individual can control is the need for self-care. The notion that we, whose job it is to provide compassion, may actually be in need of it feels misplaced when every patient appears needier,” says Dr. Srivastava, who in addition to being an oncologist, is a Fulbright scholar and an award-winning author.

“But doctors and nurses must realize that self-care and altruism can co-exist. Protecting our own emotional health is compatible with advocacy for others. Without compassion for the self, we will have nothing left to give.”


Dr. Ranjana Srivistava is an Australian oncologist, a Fulbright scholar and an award-winning author. Her latest book is “After Cancer: A Guide to Living Well”. She is the recipient of the Medal of the Order of Australia for her contribution to doctor-patient communication.

Posted in Physician Burnout

A Bittersweet Farewell to IPEP’s Interns

As another semester passes, we bid a bittersweet farewell to our amazing interns, many of whom are graduating from their respective programs at Simmons College and Northeastern University, or continuing their education in fields related to public health and research. We are grateful for their diligence and hard work on their Institute related projects throughout the year. These projects and initiatives have greatly benefited from our interns’ contributions. Projects on which the interns contributed included the Aligning Expectations During Surgical Consent, Advancing Relational Learning Worldwide, Disclosure and Apology after Medical Error, and Patient Centered Anesthesia Informed Consent projects.

Each of the interns brought their unique background, skills, and knowledge to their roles within these projects and initiatives, enhancing each project’s continued success. As we bid this cohort of interns farewell, we wish them nothing but the best of luck and success in their future endeavors. Thus far, these endeavors include:

-Taking a position at our partner institution SIMPeds
-Potentially taking a position at a public health research facility in Australia focused on Aboriginal health.
-Continuing their education into graduate school with the intention of becoming a Child Life Specialist
-Accepting a position within the Harvard Public Health research branch
-Continuing their education into medical school
-And continuing their degree in Public Health to later receive a degree to become a Physician Assistant from Northeastern University.

IPEP has developed a unique, interprofessional method of teaching the intricacies and nuances of holding difficult conversations among clinicians, families and patients. We can say with pride that our interns have brought this concept to life right here in the office, contributing their unique perspectives, ideas, and collaborations with our team as a whole. In effect, we’ve learned as much from them as they have from us. We hope you’ll join us in congratulating our intern cohort on their hard work and dedication, their graduation into their new chapters in life, and thanking them for their contributions to IPEP’s initiatives.

Posted in IPEP Team

Tips for Preparing to Disclose a Medical Error or Adverse Medical Event

Speaking with patients or their families after a medical error or an adverse medical event is one of the most difficult conversations a clinician can have. Rather than taking a deep breath and walking into this stressful event unprepared, being thoughtful about how the meeting might progress and what the priorities might be is well worth your time. Preparing for a difficult  conversation, in fact, can greatly support the interactions between the patient and clinical team and help to reduce the anxiety felt by all. Here are some tips for preparing to have such a conversation:

Tip 1:  Purpose 

Remember that the meeting with the patient and family is for their benefit.

Tip 2: Team Members

Determine which clinician/provider(s) should be present for the initial conversation and assess who should be available to support the patient and family.

Tip 3: Present a Unified Voice

Before meeting with the patient or family, discuss the need for the team to present themselves in a sincere, unified, and professional manner. This is not the time for the team members to debate about the event.

Tip 4:  Avoid Blame

Avoid blaming others. For example, saying, “the lab always does this,” or blaming the system.

Tip 5:  Be Honest

Think about what you will say to the patient or family about what has happened. Honestly share the facts of the situation, as they are known, with the patient and family. But, resist the temptation to speculate beyond what you know for certain at this point.

Tip 6:  Try to Anticipate the Patient or Family’s Needs

Anticipating the patient’s and family’s needs and being prepared ahead of time, even practicing the conversation in role play, can be very helpful. Speak with an institutional coach or other resource and the team beforehand to anticipate potential questions and emotional reactions from the patient and family and how you might respond.

These tips are based on the “Guidelines and Tips for Disclosure and Apology Conversations” video narrated by Dr. Elaine Meyer in collaboration with OpenPediatrics

Posted in Disclosure and Apology

“Doctor, the Family is Here”: The Challenges of Communicating Difficult News in the Emergency Department

By Gabriela Toutin Dias, MSc

This was his first shift as an attending. Fresh out of emergency medicine training, he felt an overall sense of relief and satisfaction; it had been a good shift. As night fell, his thoughts increasingly turned to the moment he would arrive home, hug his wife and son and wind down. He was interrupted by a nurse; motor vehicle accident coming in, 17 year-old boy, multiple fractures, intubated at the scene, blood pressure dropping. He quickly stood up and made his way to the emergency room, it was go time.

As the patient was rushed into the emergency room, the entire team was ready. In his mind, he read off a checklist of all the steps in assessing and managing a trauma case: airway, breathing, circulation, all the letters and acronyms clearly organized; he had seen this so many times and wondered if it should feel automatic by now. It didn’t. He was sweating, heart pounding in his chest. Severe trauma, young patient, he had to get this right; the odds were against him.

He could see all his team members focused and rapidly working their way to make sure this kid survived. He wondered if they were as worried as he was. In front of him, a text book case of hypovolemic shock and a Patriots jersey, his favorite team. Hands moved in a quick, almost orchestrated manner, lots of voices at the same time as he led the case and a palpable tension in the air; they had to move faster. Fluid, blood, voices in the room becoming louder. Cardiac arrest. He stepped up and quickly began compressions, he could not let this one go, he was too young and there was too much life ahead of him. He tried to push away images of his son, but they kept popping in his head. He had to focus, but as his arms became weaker, somebody took over. As he wiped the sweat from his face, he felt a sinking feeling in his stomach and took a step closer to the patient; he didn’t even know his name. He resumed compressions for what felt like a confusing mixture of time standing still and time flying past him; he was in a zone and all he could think of was saving his patient. Someone touched his shoulder and told him 50 minutes had gone by; they had to call it. Everything around him froze. As that person, kindly but firmly, removed his hands from the patient, an unfamiliar voice broke the silence in the room, “Doctor, the family is here”.

The case illustrated above, although fictional, is a realistic representation of what transpires inside an emergency department (ED). During the four years I worked as a clinical psychologist inside the ED of a tertiary teaching hospital in Brazil, I experienced on a daily basis the feeling of working in a high-energy and fast-paced environment. The crisis nature of emergency care often results in healthcare professionals working under constant time pressure and the uncertainty of managing unpredictable situations.

In this context, communication between physicians and patients or families acquires unique aspects in the ED. The task of delivering difficult news is routine and extremely common, yet it is still perceived as one of the most difficult responsibilities in medicine. Furthermore, this particular type of communication is a common source of distress for physicians and, in extreme cases, burnout, fatigue and depression-related symptoms (Brown et al., 2009).

On the other hand, a visit to the ED can also be an overwhelming experience for patients and/or family members when, in many cases, news of a serious illness or, as our case scenario illustrates, death may come up. This news, often given in an abrupt manner, may lead to feelings of abandonment, loneliness and loss of control. Many will forever remember the moment in which bad news was given to them (Takayesu & Hutson, 2004).

In the ED, most encounters between physicians and patients (or family members) occur for the first time, neither party entering this relationship by choice, a set-up that can potentially favor mistrust or negative stereotyping. In addition, assessment, rapport building and patient education tend to happen simultaneously rather than sequentially because of the rhythm in which care is provided. With these elements in mind, it becomes clear that communicating effectively with patients and families is a core skill for emergency physicians. The effective management of communicating difficult news results in patients’ better comprehension of information, satisfaction with medical care, level of hopefulness, and subsequent psychological adjustment (Toutin-Dias et al., 2016).

So, what can we do to achieve the effective communication of difficult news? Here is where simulation-based training becomes a powerful ally. Communication is a skill that can be enhanced by training, therefore it is essential that we offer the opportunity for every professional involved in patient care to experience the event of communicating difficult news in a controlled and psychologically safe environment. With the help of standardized patients, we can design realistic and engaging interprofessional scenarios that ultimately lead to the creation of individual “skill set archives,” or mental resources that can rapidly be accessed when faced with real-life situations like the ones seen inside the simulation center. As for our attending, wouldn’t it be ideal if he could reflect on lessons learned from previous experiences with simulated pediatric death notifications before stepping in to talk to the patient’s parents?

Gabriela Toutin Dias, MSc is a psychologist from Sao Paulo, Brazil where she worked in the emergency department of the Hospital das Clinicas (tertiary teaching hospital affiliated with the University of Sao Paulo’s Medical School) as a clinical psychologist and simulation educator. Currently, Gabriela is a fellow in the Institute’s Faculty Fellowship for Leaders in Collaborative and Humanistic Interprofessional Education. In addition, she works alongside staff, faculty, and leadership on several projects and initiatives within the Institute.

Posted in Simulation

PERCS Rounds: A Clinical Ethicist’s Reflections from the “One-Room Schoolhouse”

by Kerri Kennedy

How does one learn the art of navigating difficult clinical encounters with compassion and skill?  Thankfully, IPEP has developed an innovative approach to teaching this art, sometimes referred to as the “one-room schoolhouse” which creates a space for diverse practitioners to learn from and alongside each other.  The Program to Enhance Relational Communication Skills (PERCS) Rounds at Boston Children’s Hospital is one example of this educational approach. The monthly, hour-long forum is conveniently held on patient care units and draws interdisciplinary professionals together to discuss and explore challenges they face in everyday practice. In my role as a clinical ethicist at Boston Children’s Hospital, I regularly participate in the NICU-based PERCS Rounds. I would like to share a few reflections about what I find so valuable about them:

We’re all in this together.  PERCS Rounds is a safe forum for staff to take a brief pause from their work to join with colleagues and discuss the myriad challenges they face in day to day practice. Because the topics are selected by unit staff members themselves, attendees typically find them highly relevant and useful to their practice. The PERCS Rounds discussions are wonderfully engaging and create a sense of shared experience which fosters a sort of camaraderie (“I’m not the only one who finds this challenging…”). And these discussions are far from vent sessions. Those who participate are rewarded with new ideas and strategies for addressing the difficult conversations and clinical challenges they are facing. It is especially gratifying to see junior staff members learning from more senior ones…and vice versa!

“None of us is as smart as all of us.” This famous quote by Kenneth H. Blanchard, an IPEP favorite, nicely captures the spirit of the “one-room schoolhouse.” During PERCS Rounds planning, great care is taken to consider who to invite to a given Rounds that can bring expertise best matched to the topic at hand. This gives participants access to the knowledge and talents of a wide range of hospital professionals, from interpreters to child life specialists, even experts in meditation. In the same vein, I often find that PERCS Rounds is a natural forum for providing ethics education, and in a manner that is responsive to the real time needs and questions that participants have.

These people inspire. People sometimes ask how I cope with the sadder aspects of my work. My reply is simply, “I find the people so inspiring.” The patients, the parents, the clinicians – they are profoundly resilient. PERCS Rounds creates a space where this resilience can be seen, shared, and further cultivated. Recently, members of IPEP’s family faculty have begun regularly participating in PERCS Rounds. This inclusion of the patient/parent voice adds a crucial layer of richness to discussions and helps to keep the focus on the patient, who is always at the center of our care. Time and again, I am moved by my colleagues’ dedication to providing the best care for patients and families, and I have often reflected that this work truly draws out the best of the human spirit. I think that’s pretty inspiring.

 

Kerri Kennedy MA, RN is a clinical ethicist at Boston Children’s Hospital.  There, she coordinates and facilitates ethics consultations, conducts unit-based ethics rounds, and assists with the development and implementation of ethics-related institutional policies.  In addition, Kerri is an active member of the Boston Children’s Ethics Advisory Committee, participates in the Harvard Clinical Ethics Consortium, and serves on the Harvard Task Force on Ethical Issues in Emergency Preparedness.

 

Posted in IPEP Team

Informed Consent Prior to Surgery: It’s Not Just About Signing a Form

Featured in Boston Children’s Today
By: Adena Cohen-Bearak

As the sun rose on a cold November morning, 20 surgeons and 3 nurse practitioners from the Department of General Surgery at Boston Children’s Hospital gathered for the PERCS: Aligning Family-Team Expectations During Surgical Consent workshop developed by the Institute of Professionalism and Ethical Practice (IPEP). (PERCS is IPEP’s signature program, the Program to Enhance Relational & Communication Skills.)

Many surgeons and nurse practitioners are trained to understand the informed consent process as a legal exercise: there is a discussion with parents about the details of their child’s upcoming surgery, a presentation of the informed consent information to the family (risks, benefits, alternatives, etc.), and then responses to any questions. Then, right before the surgery itself, the family signs an informed consent document.

Done? Not so simple.

Research shows that patients only tend to absorb half of surgical informed consent information that they receive. This can result in the misalignment of expectations of the family compared with the expectations of the surgeon pertaining to the goals of the surgery and the process of post-op recovery, among others.

This risk of causing a family’s dissatisfaction about their child’s medical experience, even if the surgery was successful, is great, and can have a long-term impact on the family. In response to Boston Children’s Hospital’s focus on the Patient Care Experience, IPEP is doing something about this.

Through a combination of didactic learning, case simulations with trained actors posing as parents, experiential learning, use of everyday ethics and debriefing, surgeons and nurse practitioners learned to appreciate the importance of increasing their family focus during surgical consultations at November’s workshop.

When asked about the most valuable skills and information that they acquired, participants reported learning how to relay information to the family, communicating with children, and learning multiple ways to recognize family emotions and establish connections.

At the workshop, Craig Lillehei, MD, senior associate in Surgery and the project’s co-principal investigator, along with IPEP’s Director of Patient Safety and Quality Initiatives Sigall Bell, MD, took on the role of lead facilitators. The faculty and facilitators also included Adena Cohen-Bearak, MEd, MPH; Pam Varrin, PhD; Lisa Burgess and Lauren Mednick, PhD.

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

Family facilitator Lisa Burgess, a Boston Children’s parent and member of the Family Advocacy Council, 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.”

Aligning Family-Team Expectations During Surgical Consent has included the participation of surgeons and nurse practitioners in the departments of General Surgery, Neurosurgery, and Urology. IPEP is in the process of scheduling the last workshop with the Department of Neurosurgery to take place this spring 2017.

This work has been made possible through a generous grant by CRICO’s Patient Safety Risk Management Grants Program, and through funding from the Program for Patient Safety & Quality (PPSQ)

Posted in Aligning Expectations

An IPEP Actor’s Experience

By: Jessica Webb

Jessica Webb, IPEP actor, was moved to write based on her participation at the South Shore Hospital PERCS launch.jessica-webb-hudspeth

I have had the honor of working as an actor with PERCS for 6 years. In that time, I have had the opportunity to share and represent the experience of all kinds of families: high income, low income, supportive and communicative, divorced and aloof, single parent, working parent, and so many more. But for the first time in all my years working with IPEP’s PERCS initiative, I was finally able to portray my family—a family of two moms. While same-sex parents may not seem groundbreaking for those of us lucky enough to call New England our home, for my moms who raised me in Michigan, raising a family as two gay women was a defining factor of my upbringing and their daily lives.

My mother spent many years in the closet due to the fear of what her identity could cost her: her job, her livelihood, or losing custody of me, all because she way gay. Because of the intense pressure my mother experienced to remain closeted for so long, my mothers and I never truly experienced what being a family felt like outside of our loving and unconditionally accepting home. In one instance when I was 5 years old, I had to go the hospital to receive stitches. I clearly remember hearing my mother lie during my intake and call her partner, my mom, Colleen, her sister. Colleen was not allowed to be with me unless she was “family.” In this heartbreaking instance, while only one of many, my mother had to bend our family’s truth to fit the outside world’s limited understanding of what “family” means in order to include her partner, my mother, in my care.

My mother, who still lives in Michigan, is now working as an advocate for LGBTQ rights within the senior community, as well as faith-based organizations in an attempt to encourage both Jewish and Christian congregations to institute open, affirming and anti-bullying policies for their members. During this particular PERCS workshop simulation, I was the one who got to be the advocate, just by being a clear, unconstrained representation of my family. Naturally, I called my mother after the simulation to tell her about my experience. As she asked me how it went, I began to explain all the details of the scenario, including the fact that I represented a member of a family with two moms. It was then that she began to cry—not because of the issues that were at play in the simulation, but because the issue that had defined the struggle of her entire life was suddenly not an issue at all.

Thank you, PERCS, for letting me experience here what I was never able to where I grew up: my family.

Posted in IPEP Team, LGBTQ, Simulation
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