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Promoting Patient- and Family-Centered Care Through Personal Stories

Johnson, Beverley H.

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doi: 10.1097/ACM.0000000000001086
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I feel very fortunate to have worked for more than three decades with many academic medical centers, primary care clinics, health systems, professional societies, and government agencies across the United States, Canada, and beyond to advance the practice of patient- and family-centered care and to build authentic partnerships with patients and families. While patient- and family-centered care can improve the experience of care, safety, and quality, it also can improve the learning environment for students and trainees.

From the beginning, patients and families have been essential partners in defining patient- and family-centered care and have shaped how this definition has evolved over the past 30 years.1–3 Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among patients, their families, and health care professionals. It redefines the relationships in health care by placing an emphasis on collaborating with patients of all ages, and their families, at all levels of care, in all health care settings, and in organizational change and improvement. This collaboration ensures that health care is responsive to an individual’s priorities, preferences, and values. In patient- and family-centered care, patients define their “family” and determine how they and their family will participate in care and decision making.

The core concepts of patient- and family-centered care are:

  • Dignity and respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care.
  • Information sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision making.
  • Participation. Patients and families are encouraged to participate in care and decision making at the level they choose and are supported in doing so.
  • Collaboration. Patients, families, health care practitioners, and health care leaders collaborate in policy and program development, implementation, and evaluation; in facility design; in professional education; and in research; as well as in the delivery of care.4

The Role of Academic Medicine in Promoting Patient- and Family-Centered Care

In 1999, the Association of American Medical Colleges convened a Patient- and Family-Centered Working Group with the organization now known as the Institute for Patient- and Family-Centered Care and recommended the “early and comprehensive involvement of patients and families” in educational programming.5 With the implementation of the Affordable Care Act, there is renewed impetus to partner with patients and families in various aspects of health reform and the education of health care professionals. The Institute of Medicine in its 2012 report, “Best Care at Lower Cost: The Path to Continuously Learning Health Care in America,” offers key recommendations:

Patients and families should be given the opportunity to be fully engaged participants at all levels, including individual care decisions, health system learning and improvement activities, and community-based interventions to promote health.

In a learning health care system, patient needs and perspectives are factored into the design of health care processes, the creation and use of technologies, and the training of clinicians.6

In her book Kitchen Table Wisdom: Stories That Heal, physician Rachel Naomi Remen7 writes about the power of stories: “Facts bring us to knowledge, stories lead to wisdom.” To illustrate examples of patient- and family-centered practice (and the lack thereof) and to reflect on how academic medicine can promote such care, I offer the following stories from my personal experience to capture patient and family perspectives. I hope these stories and the implications for academic medicine will generate dialogue and an agenda for change.

Families are a resource

As a six-year-old, I hemorrhaged after a tonsillectomy. I remember receiving a blood transfusion alone in the emergency room. My parents were not permitted to be with me.

Implications for academic medicine: Emergency physicians and nurses need to be trained to understand that families are a resource. They often are the continuity in the care continuum, and isolating them from their loved one puts the patient at risk for physical and emotional harm. Students and trainees must be taught to build on the strengths in families and see families as a resource for quality and safety. Attending physicians and other staff must model behaviors that encourage family presence and participation in patient care and avoid the labeling of families as “visitors.”

“Patient and family faculty” are valuable educational aides

My beloved late father-in-law was diagnosed at the age of 81 with advanced lung cancer. In one day, he and his family had two very different interactions with physicians concerning his diagnosis. At the academic medical center, my father-in-law sat on a stretcher in a multibedded outpatient room. My mother-in-law had a chair, but I did not. The physician’s first words spoken to my father-in-law were, “Turn up your hearing aid; I talk softly.” He never spoke to my mother-in-law or to me. He then proceeded to tell my father-in-law that he had a type of cancer that was very aggressive and not responsive to any available therapies. He offered no hope or help. I watched my father-in-law be devastated by this news, delivered without empathy or compassion.

In the afternoon, we met with another physician in his office. My father-in-law sat in a chair with arms; he could put his feet on the floor. My mother-in-law and I each had a chair. The doctor entered the room, introduced himself and spoke to each one of us. He shared the same terrible news with us, but he then said, “I want to know your questions and concerns. We will develop a plan and work through this together.” We did not feel abandoned; there was a connection with each of us, we were a team.

Both conversations took the same amount of time. In these encounters, our family wanted respect and dignity, especially for my father-in-law. We wanted information shared in ways that would be helpful to us and that acknowledged the emotional impact of the words we heard. We wanted help participating in and managing complex and end-of-life care.

Implications for academic medicine: In a patient- and family-centered system of care, students and trainees would have opportunities to learn how to share “bad news” in a supportive manner, offering hope but not false hope, and conveying the commitment to work together in developing the plan of care. “Patient and family faculty”—patients and families who have been selected and prepared to share their experience, perspectives, and expertise as patients or family caregivers in a variety of formats and educational settings—would be used to help future physicians prepare for this aspect of patient- and family-centered practice. There would be opportunities for attending faculty to build their communication and collaborative skills. In addition, attending faculty would be supported in learning how to include patient and family faculty in classroom sessions, noon conferences, grand rounds, and educational home and community visits. They would also learn how to involve patient and family faculty as educators and evaluators in simulation centers. The teaching and modeling of patient- and family-centered behaviors in clinical settings must be consistent with what is taught in the classroom.

Respectful communication is essential

When my late mother-in-law was 90 years old, she had several hospital admissions that began in the emergency department. She had some dementia and was easily confused. On one occasion, a physician entered the cubicle and asked the name of her cardiologist. I looked at him, puzzled, and responded, “I don’t think she has a cardiologist.” He responded with, “Well, who do you think put her pacemaker in in 1987?” I responded, “She does not have a pacemaker. Do you have the wrong patient?” Instead of responding with an apology and recognition that I was correct, and thanking me for helping to prevent an error, he turned around and left the cubicle without a word to either my mother-in-law or me.

Implications for academic medicine: In a patient- and family-centered system of care, this physician would have been explicitly taught how to communicate respectfully with the patient and family when an error is made or a near miss occurs. The behaviors would have been modeled for him by attending faculty. He would have apologized for his error or admitted his uncertainty about the situation. He would have thanked the family member for speaking up and helping to prevent an error or series of errors. He would have encouraged the family to continue to speak up, reinforcing that the family often know the patient best and can be allies for quality and safety.

Bedside teaching rounds encourage patient and family participation

My mother-in-law was hospitalized in an intensive care unit following a fall. Physicians rounded in an interdisciplinary group, but as they approached each room, they closed the sliding glass door and talked about the patient outside the room, without including the patient or family. When they entered the room, they discussed the patient in the third person, excluding the patient and family from meaningful participation in care planning. We were told the plan of care and permitted to ask questions, but we were not encouraged to share observations or participate in more meaningful ways.

Implications for academic medicine: Conducting teaching rounds at the bedside with the patient and family is a lever for changing the organizational culture of academic medical centers. Faculty development programming is necessary to support attending physicians to make this change in practice. Rounds can become an opportunity where students and trainees see patient- and family-centered communication modeled, and where they gain experience in conveying respect while preserving dignity, sharing information in useful and affirming ways, and collaborating with patients and families in care planning and decision making.

Patient preferences, priorities, and values should be respected

Recently I was diagnosed with type 1 diabetes. My initial endocrinologist asked questions about me and my family, work, and lifestyle. He found out about my priorities and values. He shared useful information with me that helped me manage my chronic condition. When he retired, his practice was bought by another endocrinologist. Before my visit with this new endocrinologist, I asked for my latest lab results so I could consider the questions I might have. The nurse informed me that “the practice did not do it that way”; I would get the lab results from the doctor. I persisted, stating that it was helpful for me to have an opportunity to review prior to seeing the doctor. I was told, “You can have it this time, but don’t ever ask again.” When I met with the doctor, the first thing he said to me was, “I don’t want you wasting my staff’s time.”

Implications for academic medicine: The blatant lack of respect for the patient and what was important to her is very evident in the second part of this story. There must be a system for accountability to ensure that faculty and clinical preceptors model respectful, collaborative behaviors and demonstrate how to elicit information from the patient about his or her learning style and preferred ways for receiving information. In a patient- and family-centered system of practice, students and trainees would also learn practical ways to set up an outpatient practice so that patient preferences, priorities, and values are respected. With clinical faculty and patient and family faculty as evaluators, students and trainees would also have opportunities to practice communication skills in various ambulatory care scenarios in simulation centers.


List 1 summarizes key recommendations for all levels of medical education that evolve from the stories shared in this Commentary as well as myriad stories from other patients and families that I have heard over the years. List 2 offers selected resources to share personal stories and build meaningful partnerships with patients and families in academic medical centers, primary care practices, long-term care communities, and in all phases of medical education.

Recommendations for Promoting Patient- and Family-Centered Care Through Medical Education Cited Here

  • Embed patient- and family-centered concepts and strategies in the mission, curriculum, and accountability systems of academic medical centers and medical schools as well as at all schools preparing health care professionals for practice and at all levels of graduate medical education.
  • Provide opportunities through faculty development for attending faculty to learn how to partner with patient and family faculty in medical education.
  • Provide opportunities through faculty development for attending faculty to learn how to conduct teaching rounds in the room with the patient and family and to model patient- and family-centered communication.
  • Provide opportunities for students and trainees to learn directly from patient and family faculty at all levels of training and in a variety settings.

Additional Resources for Advancing the Practice of Patient- and Family-Centered Care and Sharing Personal Stories as an Educational Strategy Cited Here

  • Crocker L, Johnson BH. Privileged Presence: Personal Stories of Connections in Health Care. 2nd ed. Boulder, Colo: Bull Publishing Company; 2014.
  • Josiah Macy Jr. Foundation. Partnering With Patients, Families, and Communities: An Urgent Imperative for Health Care [Conference Recommendations]. New York, NY: Josiah Macy Jr. Foundation; 2014.
  • Minniti M, Abraham MR. Essential Allies: Patient, Family, and Resident Advisors; A Guide for Staff Liaisons. Bethesda, Md: Institute for Patient- and Family-Centered Care; 2013.
  • Weinberger SE, Johnson BH, Ness DL. Patient- and family-centered medical education: The next revolution in medical education? Ann Intern Med. 2014;161:73–75.

Patient- and family-centered care offers the framework and strategies for bringing about transformational change in all learning environments for students, trainees, and faculty—from the classroom setting to clinical settings across the continuum of care.

Acknowledgments: The author wishes to thank Barbara Kahl and Caren Cramer for their assistance with this Commentary.


1. Shelton T, Jeppson ES, Johnson BH Family-Centered Care for Children With Special Health Care Needs. 1987 Washington, DC Association for the Care of Children’s Health
2. Johnson BH. Family-centered care: Four decades of progress. Fam Syst Health. 2000;18:137–156
3. Johnson BH, Abraham MR Partnering With Patients, Residents, and Families—A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities. 2012 Bethesda, Md Institute for Patient- and Family-Centered Care
4. American Hospital Association, Institute for Family-Centered Care. Strategies for Leadership: Patient and Family-Centered Care. 2004 Chicago, Ill American Hospital Association
5. Patient- and Family-Centered Care Working Group, Association of American Medical Colleges, and Institute for Family-Centered Care. Proceedings of the Patient- and Family-Centered Care Working Group. 1999 Washington, DC Association of American Medical Colleges
6. Institute of Medicine of the National Academies. Best care at lower cost: The path to continuously learning health care in America. 2012 Accessed December 1, 2015
7. Remen RN Kitchen Table Wisdom: Stories That Heal. 1997 New York, NY Riverhead Books
© 2016 by the Association of American Medical Colleges