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The Beryl Institute invites members to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, please contact us at


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Patient Experience: A Relational Achievement

Posted By Kenneth J. Gergen, Friday, June 24, 2016

We often think of experience as a private mirror. That is, there are events in the world, and they are reflected in our private experience. A patient may thus experience individuals in a healthcare system as nurturing and helpful as opposed to cold and indifferent. This view is shortsighted in two related ways. First, we are not passive recipients of others actions toward us; we are active agents in the world – even as patients – and these activities affect how we experience others. The quality of experience depends on what we are seeking, and what role we are playing. For example, the experience of pain you might experience at a sharp blow to your head is not the same as that of a boxer in the ring. Likewise, the pain of a needle being stuck in your arm is quite different for a patient who fears pain and is trying to avoid it, than one who eagerly seeks a blood test. The way we participate in health systems will vitally color what and how we experience.


This brings us to the second flaw in the common assumption that experience is like a mirror. It is not simply that the way we participate colors our experience. But this participation does not take place in a vacuum. The quality of experience depends on the relationships in which we are participating. Consider again the pain of the boxer. He is not boxing alone, but participating in a traditional form of relationship. In the same way, when we approach health systems with fear and defensiveness, we are also participating in a particular social tradition. Similarly, the way one experiences the probing hands of a doctor – a formalized relationship - is far different than the same touches occurring in the hands of a partner’s embrace. In effect, we may say that experience vitally depends on our participation in relationships.


In this light, the concern with patient experience shifts focus from the individual to the relationships of which the individual is a part. In effect, our sites turn to relational practices, and especially those practices that enhance the patient’s experience. Some of these practices are clear enough. We all know the positive impact of family relations that can lift the spirits and give meaning to the future. New innovations are also emerging on the scene. Programs in which patients are drawn into the treatment team – collaborating with physicians and nurses in their own care – are blossoming. Programs that increase the empathy of doctors for their patients, and patients for their doctors, are growing in numbers. Practices in which patients contribute to the education of physicians are inspiring. In all cases, there is an increasing sense that the best in healthcare grows from an awareness that "we are all in this together.”


For anyone wishing to know more, to explore the many potentials of a relational approach to healthcare, I would also like to recommend an upcoming conference Relational Practices in Health and Healthcare: Healing through Collaboration. It promises to be a lively, informative, and significant event.

This international conference will be held in Cleveland, Ohio at the new Global Center for Health Innovation, November 10-12, 2016. The conference is offered by the Taos Institute in collaboration with the International Institute for Qualitative Methodology, Alberta, Canada. The significance of relational practices will be underscored by a plenary offering from Jason Wolf, President of The Beryl Institute, and passionate champion of positive patient experience.

Kenneth Gergen is a Senior Research Professor at Swarthmore College and the President of the Taos Institute. He is internationally known for his writings on social construction and relational process, and their many applications to professional practice.

Tags:  collaboration  participation  partnership  patient  quality of care  relational healthcare  relationship 

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Navigating the Path Ahead: A Roadmap for Patient and Family Engagement

Posted By Ushma A. Patel, MSPH, Thursday, November 12, 2015

To patients. For patients. With patients. This is how the healthcare system has evolved in how we interact with and engage patients and families in their care. As a healthcare researcher, I was always drawn to the patient and family engagement field. However it wasn’t until recently that my passion for improving the healthcare system deepened. In 2014, I survived preeclampsia, HELLP syndrome and a subarachnoid brain hemorrhage after my daughter’s birth. Luckily I am doing just fine now, but my daughter went on to face multiple health challenges, including open heart surgery at 7 months, eye surgery at 15 months and a suspected genetic condition that will have lifelong implications. As a mom and patient advocate, I know firsthand how important it is to stay engaged with her providers and healthcare – not just for improving her health but also for other children who may face similar battles.

There are many perspectives of what patient and family engagement is, and despite the variations, I think we can all agree that it is critical. The more important question is exactly how we engage patients and families in meaningful ways.

Based on Carman et. al’s Framework for Patient and Family Engagement, the American Institutes for Research developed the Roadmap for Patient and Family Engagement in Healthcare Practice and Research with funding from the Gordon and Betty Moore Foundation. The Roadmap reflects collective input from over 70 stakeholders who represented a variety of perspectives - clinicians, healthcare leaders, patients, families, insurers, payers, and researchers. It includes a vision for patient and family engagement in healthcare, and 8 change strategies to drive action towards increased patient and family engagement: 

  1. Patient and Family Preparation. Educate, prepare and empower patients and families to engage effectively in their health and healthcare 
  2. Clinician and Leadership Preparation. Educate, prepare and empower clinicians and healthcare leaders to partner effectively with patients and families
  3. Care and System Redesign. Redesign care to support partnerships between patients, families, and the healthcare team
  4. Organizational Partnership. Redesign healthcare organizations to make patients and families part of the governance structure
  5. Measurement and Research. Create measures and conduct research to improve care, facilitate changes, and understand outcomes
  6. Transparency and Accountability. Make data and information transparent to promote accountability and enable action
  7. Legislation and Regulation. Encourage patient and family engagement through regulation and legislation
  8. Partnership in Public Policy. Identify and provide opportunities to integrate patient and family perspectives into public policy

These change strategies occur across the 3 levels of engagement – (1) direct care, (2) organizational design and governance, and (3) policy. Within each of these 3 levels, there are opportunities for engagement across a continuum, ranging from consultation to partnership and shared leadership. At the consultation end of the continuum, patients are involved but have limited power and decision-making authority. At the partnership and shared leadership end of the continuum, patients have shared power and responsibility and are active partners in defining agendas, co-creating materials, contributing information, and making decisions. And it’s at this end of the continuum where there’s an opportunity for real change to occur.

Adopting these change strategies can take time, and therefore, the Roadmap also includes 5 simple actions that different stakeholder groups can take immediately such as preparing for their healthcare appointment or inviting patients and family members to share their experience.

There may not be a clear path to how we improve population health and the patient experience or reduce health care costs, but the Roadmap provides a solid starting point to navigate the way. Click here to read more about the Roadmap and Framework.


Since 2009, Ushma Patel has worked as a health services researcher at the American Institutes for Research in their Chapel Hill, NC office. Prior to AIR, she worked for the Lewin Group. In her spare time, Ushma is an avid DIY crafter, and also volunteers as a member of the Patient Advisory Council for the Preeclampsia Foundation and for the Duke Pediatric Cardiac Surgery Center.

Tags:  family  measurement  patient  research 

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The Fine Art of Healing

Posted By Bruce W. Heinemann , Thursday, October 1, 2015
Updated: Thursday, October 1, 2015

It’s now been fourteen years since I had surgery for prostate cancer at the very dangerous age of 49. Like all who experience cancer, this period in my life has been a journey of fear, uncertainty, hope, but ultimately a realization of an opportunity that in illness often lies the very seeds of our own healing. But even more importantly an opportunity to heal the greater dimensions of our whole being. Much attention has been given to the concept of Wellness in healthcare in the recent decades. And that concept has been front and center in my consciousness in my years long journey of insight, understanding, and ultimately, transformation.

I have come to understand wellness is a way of living, a way of being. It is a way of understanding ourselves and our place in the world. Above all it is the profoundest realization of the inseparable oneness of mind, body and spirit. To this point I think of how the term "mind/body” connection is currently used in medicine and healing. To me, this very term is in itself highly descriptive of what has long been the perception that there would be a separation of the mind and body in the first place. My experience has taught me that there is no "connection” because there is no separation, all are but one. And as such, from my cancer experience, I have come to firmly believe that the patient experience that produces the best healing outcomes are ultimately rooted in the nurturing of our whole being.

Most illnesses, but cancer particularly, seem to most often illicit the immediate response: "Am I going to die”? I found that working through this fear was key to moving forward into healing. I consider myself most lucky because, as a fine art nature photographer, in my art there was an enormous cathartic opportunity to face this fear with not only courage, but unexpected insight. It has now become an endeavor of mine to share with others those insights and feelings that helped me through that process.

Toward that end, I have developed a series of short multimedia inspirational videos entitled: The Fine Art of Healing. Also as a musician who has throughout my career presented my images with music and words in concert, I am keenly aware of the profound power of these three components of our sensory awareness when experienced in consort. In my first video, Imagination Inspired, I encourage the patient to imagine their life beyond today and into a future healed, to understand that what we can imagine already exists. We need not assume that what we experience today is what we must experience tomorrow.

In the second video: Love and Gratitude Are The Fairest Blossoms Which Spring From The Soul, I explore the profound healing power of loving and being loved, for there is nothing more powerful in the healing process than this.

I have begun placing them in healthcare facilities for their broadcast on monitors and for use on iPads for patients to watch when undergoing treatments such as chemo or rehab. The value of inducing a state of relaxation and pleasure in these settings towards creating better patient experiences and resulting outcomes can hardly be overstated.

Connecting with a patient at the deepest emotional level during the healing process with images of beauty, inspiration, and yes, even thought provoking ideas, ideas to help them see themselves in their world as healed, and in a state of wellness, is to help them access the power of their own life force, from which ultimately, I believe, all healing comes.

My journey from cancer to healing has lead me to the realization that what we think, believe and feel, largely determines the conditions present in the state of our wellness. Thus, with this understanding, the providers of patient experience have the opportunity to create an environment in which these essential elements of our very being, are understood and nurtured, with the ultimate goal of producing the very best outcomes.

Lastly, it has been this realization that has made the last fourteen years, truly the transformational journey of my life. And as such, it is my desire to share this powerful and uplifting healing process with others, that they may find their own transformation in it as well.

Bruce W. Heinemann is a fine art nature photographer, writer, publisher and speaker. His speaking presentation includes his four videos and is entitled: The Fine Art of Healing: A Journey of Personal Transformation.

Tags:  healing  patient  patient experience  video 

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Making a Difference – Working as a Medical Interpreter

Posted By Jane Blackburn, Friday, September 11, 2015
Updated: Monday, September 14, 2015

The phone rings. The interpreter answers the phone knowing they may be moments away from changing someone’s life.

That’s a thought that goes through the mind of thousands of over-the-phone medical interpreters. These professional interpreters field the urgent calls—from doctors, nurses, paramedics, and even patients themselves—where time and accuracy are often the difference between a spiraling crisis and comforting relief.

In order to comprehend life as a a medical interpreter, we have to begin at the other end of the line, with the limited-English speaking patients. Life for them is trying enough. Add to it the pressure of an imminent baby delivery, a late-night medical emergency, or understanding complex insurance forms, and you begin to see the difficulties they face and the emotions they encounter ranging from exasperation to depression to outright panic. That’s where professional over-the-phone and video interpreters work their wonderful magic.

For instance, interpreter Ayan A. received a call from a terrified, sobbing mother who dialed 9-1-1 because her child was injured and having difficulty breathing. Hearing Ayan’s voice on the line helped to calm the mother so that she could understand and follow the CPR and first aid instructions needed to stabilize her child until the ambulance arrived. Fortunately, by the end of the call, the child had opened his eyes and the bleeding had stopped. Before hanging up, the 9-1-1 operator commented to Ayan that together they had saved a life.

And then there’s Ashi F. He received a call from a nurse who along with a doctor was helping a young woman in labor with her first child. With a calm voice, Ashi helped the medical team through the epidural and delivery of the baby girl. Before the call ended, Ashi heard the sweet cries of the newborn baby as she was placed into her mother’s arms.

A third interpreter, Firas A., was speaking on the phone with a nurse and her cancer patient while they waited for the doctor to arrive with test results. The wait seemed like an eternity, the patient wasn’t optimistic, and Firas began to expect the worst. The doctor finally appeared and declared that the patient was cancer-free. Overwhelmed by his own joy, Firas had to compose himself before interpreting the good news.

And there are countless other stories just like these.

However, these compassionate professionals do much more than interpret words from one language into another. It’s essential that medical interpreters receive specialized training and testing in order to practice their trade. That means they must be intimately familiar with medical terminology and protocols, trained to remain calm during a crisis, and schooled in cultural sensitivity. All of which helps prepare them for any situation that might arise. The use of professional medical interpreters enables accurate diagnosis, reducing unnecessary testing, increasing efficiencies and lowering the cost of patient care.

In addition to the many benefits of interpreting, what most interpreters value about their work is hearing the gratitude expressed by patients. Mario C. summed it up this way, "I have helped with transplants and delivering children, all using my voice. Interpreting makes a difference. I make a difference.”

Read the stories of patient encounters, in the words of professional interpreters, at Real Life Interpreter Stories.

Jane Blackburn joined LanguageLine Solutions in 2001 as a Customer Service Manager. Since 2013, Jane has been the Director of Interpreter Services with responsibility for managing the 8000+ LanguageLine Solutions Interpreter workforce. Jane has a Bachelors degree from California State University.

Tags:  language  medical interpreter  patient  patient experience 

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Transitioning from Hospital to Home: The Process is a Mess

Posted By Suzanne Steidl, Thursday, March 5, 2015
Updated: Thursday, March 5, 2015

For patients and families, remembering hospital experiences can be like remembering relationships —we recall the good and forget the awful. If the food was surprisingly good and the nursing staff was especially nice then it was a good experience; the bad is forgiven and forgotten or not acknowledged at all. Our experience surveys always arrived while I was in the throes of managing my mother’s illnesses and recoveries at home: I didn’t have time to do them and mostly forgot the details anyway. I had bigger fish to fry. So when I see a billboard declaring that a hospital is #1 in patient satisfaction, I have to wonder.

I’m emerging from six years of caring for my mother who was frightened into quadruple bypass surgery at age 82 despite the fact that her Parkinson’s disease was advanced. In addition to infection that required readmission, the surgery and recovery accelerated her Parkinson’s progression. Given encouragement and time to talk with her far-flung children before agreeing to immediate surgery, she may have thought about how she preferred to live out the rest of her life and decide against it. But she didn’t and she extended her life eight years, uprooting me from my home 1,000 miles away and challenging me to endlessly figure out, mostly on my own, "what do I do now”? I’ve experienced the continuum of care all the way to more than a year of corporate hospice care—I don’t recommend it—and getting zero information about alternatives to nursing home placement. My mother died in August, incapacitated and demented.

I don’t know what I don’t know so I depend on the experts to create processes and materials to help me make good decisions and to maneuver this often incredibly frustrating, difficult and potentially dangerous system.

My mother couldn’t function without her Parkinson’s meds and, until I wised up, they did not follow her from hospital to rehab. Early on, no one ever told me that there would be a medication gap so it became my job to remember to provide them. At discharge, everyone is given the same instructions regardless of our ability to retain information or foresight to take notes. For some, it takes courage to question or ask the discharge planner to slow down and clarify. Others are functionally illiterate. There’s an awful lot to organize. And who really has time or the will to read brochures when caregiving demands consume us? Not me.

Then there’s the home medical equipment. The guy who drives the delivery truck quickly explains how to operate the equipment. He’s always in a big hurry and doesn’t have printed material. Once, an oxygen concentrator was delivered and I was not instructed to fill it with distilled, not tap water or clean the filter. Filter? The alarm sounded the first night, I didn’t know why. I could go on.

I should know better. That I do not really troubles me. If I were an 80 year-old tending an antibiotic infusion pump at home, I don’t know what I’d do.

Maybe some facilities consider discharge planning and home care to be part of the patient experience that’s tracked and enhanced. That’s not my experience but I surely wish it were.

Suzanne Steidl is the founder of Your Daughter’s In Town: Health Advocacy for Elders. She is an advisory board member of the Healthcare Technology Safety Institute (HTSI) of the Association for the Advancement of Medical Instrumentation (AAMI) and is working to simplify DME Instructions for Use and streamline hospital to home processes. She is a member of The Beryl Institute.

Tags:  Continuum of Care  family engagement  Hospital  patient  patient experience 

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Relationship and Resilience: A Twenty Year Journey

Posted By C.J. Weese, Tuesday, February 3, 2015
Updated: Tuesday, February 3, 2015

I have had 36 major surgeries and over 100 minor procedures, been rushed to the hospital 13 times, life-flighted three times and have had six flatlines. I have legally died six times. And all of this occurred before I was 25.

I was born with Tracheoesophageal Fistula (TEF) with atresia. I had approximately four centimeters of esophagus coming from my stomach, which formed a pouch, and less than two centimeters of esophagus coming from my mouth. That part of my esophagus was connected to my lungs. I was born at 5:43 a.m. and at 6:03 a.m., I was being rolled into an operating room for the first of many surgeries to correct my abnormality. Between 1989 and 2009, I did not go more than one year without having a surgery or some type of procedure done. To say the least, I am very familiar with the healthcare field, but I take a different view. My view is through the eyes of a patient – a patient who has not known a normal life, but rather a life that was controlled by my health and the doctors who treated me. I have spent my life gaining insight into what a talented healthcare professional is and during my college years I gained an even deeper understanding of the vital role of talented individuals to any healthcare organization.

Shortly after beginning college, I started having problems swallowing as well as a lot of pain in my chest and left shoulder. I went in for a routine appointment and brought it up to my gastroenterologist. My doctor decided that I had an esophageal stricture and needed a dilatation. After three unsuccessful attempts to fix the problem, my pediatric surgeon referred me to a new surgeon because he thought a new set of eyes could help.

The new surgeon decided the original four centimeters of esophagus needed to be removed. They were right. The surgery was a success, but it was also a battle in and of itself. The surgery was supposed to take four hours. It took 12. I spent 17 days in the hospital recovering, 11 days of which I was in a medically induced coma. However, during my time in the hospital, I had the opportunity to meet some amazing people.

My experience began when I first met "Dr. Jones,” the new surgeon my previous pediatric surgeon recommended. He was amazing from the start. Dr. Jones took the time to listen, and showed me compassion and empathy. After he listened to me explain everything, from birth on, he took a moment and just looked at me. Then he told me, "I can’t imagine how hard this is for you. But I know that I can fix it.” He did not jump into the medical terminology of what he was going to do, but rather spoke to me in a way I could comprehend and allowed me to answer questions as he spoke. I had a discussion with him rather than being told what was going to happen. Not only did he treat me like an individual, he was honest with me. While all doctors lay out the worst case scenario, he did so in a way that made me trust him and his competency. He was very direct about what could go wrong, but he also discussed how he would fix it if it did. He assured me he had a plan in place and several back-up plans as well. I trusted Dr. Jones – not just because he was a doctor, but because he built that personal one-on-one relationship with me and took the time to make sure I knew everything and was comfortable with it all.

When I was moved down to a regular recovery room, I was assigned a nurse whom I will call "John.” He was amazing. Most nurses I encountered have been compassionate, but he went above and beyond. When John came into my room, he always had a smile on his face. Even when I was in pain and struggling, he was able to brighten my mood. He instilled hope in me and faith that I would get through this and be stronger for it. He spoke to me and learned things about me – he knew what classes I was taking and about my family and friends. He cared. He took my mind off the pain. John helped to nourish and mature our relationship with one another, which ultimately helped me recover. He gave me hope and advice and always listened to me. His positivity was admirable and something I had not yet truly experienced.

The healing I found here was more than just physical, but equally as important. Oftentimes, I feel healthcare professionals forget their patient is a person. A person who is struggling not just with physical ailments but emotionally and mentally as well. The doctors and nurses I encountered during my stay were not only inspiring, they were life changing.

C.J. Weese works at Talent Plus, where she has learned new lessons about how important finding people with a talent for health care is. She spends her days joining the goal of Talent Plus to impact one million patient lives, much like the doctors, nurses and physical therapists who saved her and made her who she is today.

Tags:  doctor  empathy  nurse  patient  Patient Experience 

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Where is the Patient in the Patient Experience?

Posted By Dorothy Sisneros, Thursday, January 8, 2015
Updated: Monday, January 5, 2015

I was watching the wonderful video by The Beryl Institute in which person after person says, "I am the patient experience.” I’ve watched this many times and each time, I feel touched and inspired. This video showcases the contribution and impact every one of us makes on patients and families.

The last time I watched, I surprised myself by having a very different response. If each of these staff members IS the patient experience, where is the PATIENT in the patient experience?

Where is the patient in the patient experience?

We might think we create the patient experience, but the patient’s preferences, goals and expectations need to drive the experience and they need to drive us to do our part in creating it. The main player and the key actor in the patient experience needs to be the patient.

How could I be the Patient Experience, when I am a constant, and every patient has a different experience? I might, for instance, have routines that I have carefully crafted to have a positive impact on each patient. I’m kidding myself if I think every patient experiences my routines the same way with a similar impact.

So, how can we include the patient in the patient experience?

By starting with the patient’s voice and ensuring that this voice guides us to personalize the experience so that it is appropriate, healing and gratifying for THIS patient NOW.

In my view, the one thing we should standardize is a process for amplifying the patient voice, so that we can personalize our part in the patient experience. The patient experience needs to be what we do WITH people, not FOR and TO them. And we need to invite the patient to be our coach to guide us through agenda-setting and the entire encounter.

Getting concrete, how would we do this?

  1. Invite the patient (and family) into the conversation immediately. Make them feel safe talking with you. "I’m here for YOU. I want to support your care and healing..." 
  2. At the start, set up the relationship as a partnership, unless the patient clearly does not want this or cannot participate. "I rely on you to tell me how you feel, what you want, and any concerns you have. I want to work together with you on your plan and then we’ll work that plan together. I see us as a team.”
  3. Ask open-ended questions and encourage multiple responses, so you can together prioritize the important few among the many. "What do you want to get out of today? And what else? And what else?” Then, "You said X, Y and Z. Tell me, which feels most important to you right now? I want us to be sure to address that!”
  4. Listen with rapt attention and respond with caring. Don’t interrupt.
  5. Show that you’ve listened by checking your understanding. "I want to be sure I understand. You feel... You want... You don’t want...”
  6. Ask yourself, knowing this about this person, how can I do my part in creating the best possible experience?
  7. Explain WHY you want to do or not do something for or with the patient before you do it. Make your intentions explicit, giving the patient the chance to say, "Yes, that works for me, or NO, that doesn’t work for me!”

Without the patient, we are not the patient experience. We have been invited to participate in the patient’s experience, not to own it.

Dorothy Sisneros is a respected healthcare leader inspiring others to achieve breakthroughs in leadership effectiveness and the patient, family and employee experience. As a Partner of Language of Caring, LLC, she has spearheaded effective implementations of the Language of Caring and breakthroughs in CAHPS scores with large health systems, hospitals and medical practices.

Tags:  family engagement  patient  Patient Experience  voice 

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Reflecting Back on The Patient Experience

Posted By Hannah Doty, Tuesday, November 18, 2014
Updated: Monday, November 17, 2014

People often talk about being deeply affected in their adult lives by experiences in their childhood—For example, if you had a bad experience with a dog, you may be afraid of dogs. Or if you had an amazing teacher in third grade, you’ll always remember her and the book she read to you. This same sort of lasting impression is made on kids who are hospitalized for long periods of time. In this respect, the pediatric-patient experience is extremely important since it can affect not only the healing process, but how a person views encounters with health professionals for the rest of his/her adult life.

The hospital is a microcosm—often the only world a child knows if they aren’t able to go home or attend school for long periods of time. A child who is hospitalized will not refer to that time in their life as their "Hospital Experience,” but rather their LIFE experience.

As a childhood cancer survivor, I now find myself reflecting on that time in my life to determine how it has impacted me and shaped me as an adult.

Overall, I believe my experience as a patient was more positive because my parents were actively involved in making sure I could continue to be "me” while in the hospital. I never felt like my identity was "Cancer Patient.”

Part of "me” was drawing and doing art projects. I often shared my artwork with doctors and nurses and involved them in my projects when I could; I asked the nurses and doctors to sign my scrapbooks, take pictures with me, and look at my drawings. I was able to create personal moments with medical staff through my own initiative and these moments helped me to cope much better.

Looking back, I think there were also missed opportunities. If all encounters with medical personnel could have started with a real interest and curiosity about me – Hannah – and not my disease, I wonder how much more positive those daily interactions would have been for all involved. I think I would have been more cooperative in some trying times rather than thinking, "I don’t like this person.” Or even worse: "I’m not going to tell them what hurts.” For children less expressive and/or outgoing than I was, the need for doctors and others to actively pursue genuine non-medical interest seems even more crucial for the best patient experience and outcomes.

Medical professionals who interact with children in the hospital are in many ways substitutes for the other people who are normally in a child’s daily life: teachers, classmates, friends, coaches, etc. As an important person in a child’s life, a doctor/nurse affects how a child views himself. This role is probably not one that a medical professional thinks about – their main job of course is to help a child get well. But when a health professional takes the time to initiate and share a personal moment with a child (discovering a common interest, sharing a joke, drawing together, etc.) there is a tremendous impact not only upon the child’s current health and experience, but upon his/her sense of self and long-term attitudes toward the medical profession.

Because these moments meant so much to me, I strongly encourage medical professionals to consciously create "me moments” with children in the hospital. I believe in doing so, everyone’s experience will be greatly improved and the positive impact will last a lifetime.

Hannah Doty is the founder of V.I.P. Hospital Productions—an organization with a non-profit branch that creates customized entertainment to enhance the experiences of hospitalized kids and promote positive interactions with their medical team.

Tags:  children's medical experience  improving patient experience  patient  patient experience  pediatric  perspective  physician communication 

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The Double Helix

Posted By Suzanne Mintz, Monday, October 27, 2014
Updated: Monday, October 27, 2014

My husband Steven has MS and he has an alphabet soup of doctors to deal with the various other conditions the MS has spawned. Our primary doctor is in a family practice that is affiliated with an ACO. Some of the others are independent providers; others part of a large delivery system. Some we’ve known for many years, but others are quite new. Regardless of the differences we usually have good care experiences.

Since being a member of The Beryl Institute I have often tried to determine what it is that makes this so and I have decided that we have a lot to do with it, how we present during office visits; the fact that I am always present; that we are clear about why we’ve come or were told to come. I carry a notebook, refer to it and take notes. We try to establish a personal rapport, be succinct in our conversation and, at least with our family doctor, use the portal frequently.

Despite these good experiences, I am rather peeved that I don’t exist in a formal way in Steven’s records. There is no listing of my being Steven’s family caregiver, in addition to his next of kin; what my work as his caregiver actually entails; how long I’ve been actively providing physical care; what my other responsibilities are, how long I have been doing this work, etc. It does not seem to occur to anyone that if something happened to me it would impact the care that I provide to Steven; that we need to be viewed as a dyad and treated as such.

Last year I had an accident that made the need for this understanding perfectly clear. I fell down the stairs and I was unable to fully continue being Steven’s caregiver for more than a month.

The September issue of Health Affairs carries my "Narrative Matters" article that recounts the experience and explores the need for a new approach to chronic illness care, one that addresses functional and social needs as well as medical ones, an approach that includes a more active role for family caregivers on care teams, care plans that reflect patient and family goals, and treating patient and caregiver as a dyad, a single unit of care, because like a double helix we are intertwined. What affects one affects the other, and visa versa.

You can read, or listen to, the article here.

I act. I am active. These are direct. They are strong. The term 'patient activation' has gained prominence recently, but it is completely off the mark. Human beings can’t be activated; only robots, garage doors and military units. Check the dictionary. I did.

Rene Descarte said "I think therefore I am." In healthcare, I act. I provide information. I ask questions. I am, or should be the starting line, the center point of all that follows. Patients and family caregivers have always been the objects of healthcare, those whose wishes are often ignored; those to whom things are done. Now is our time to speak up, to act and to be part of the team. It is time for patients, families and providers to move beyond engagement. It is time for all of us to get married.

Suzanne Mintz is a thought leader, author, family caregiver and advocate. She is the founder of Family Caregiver Advocacy, a consultancy focused on improving care and quality of life for families living with multiple chronic conditions. She is the co-founder of the National Family Caregivers Association and was its CEO for 20 years . 

Tags:  caregiver  family engagement  patient  Patient Experience 

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Language Matters

Posted By Wendy Leebov, Monday, August 25, 2014
Updated: Thursday, August 21, 2014

I’m struck daily by the fact that the words we use strongly influence our goals, strategies and outcomes. In my view, those of us determined to achieve breakthroughs in the patient, family and employee experience need to become more self-conscious about the words we choose, so that these words advance our cause, inspire people and accelerate improvement and transformation.

In the last few years, we’ve made very positive and far-reaching language shifts. Patient experience has replaced patient satisfaction. And employee engagement has replaced employee satisfaction. These language changes reflect and also drive progress.

Still, we are on automatic pilot with words. They pop out of our mouths, pens and keystrokes without much deliberation, and, when that happens, our words reflect our habitual thinking. This is a problem because our habitual thinking often limits our imagination, aspirations, goals and, therefore, our results.

Words That Reinforce Hierarchies and Pecking Orders

Some of our words reinforce the destructive pecking order and hierarchy that have discouraged the teamwork, partnership, collaboration and mutual respect we desperately need throughout healthcare.

  • Compliance vs Adherence: The term patient compliance implies that the doctor knows best, issues orders to the patient and expects the patient to obediently follow their direction. Adherence works so much better because we need to engage and partner with patients, co-develop a plan and, then, we certainly do want to help them adhere to it. We need to develop care plans with patients and families, not for them. Down with compliance! This word disempowers patients. We need engagement and partnership.
  • Super-User: Sure, it’s powerful to identify staff members who excel at certain skills and engage them in helping their colleagues strengthen these same skills. But must we call them "Super-Users”, which, in my view, implies a superiority? Why not "coach?” This is so much more descriptive of how we want to recognize and engage people in helping their peers sharpen their skills.

And how about health partner, care partner and care team instead of caregivers and caretakers?

Words That Narrow Our Scope

Then come the words that reflect a healthcare system of the past, not the present and future. Our language and our strategies have been hospital-focused, not person-focused, and illness-centered, not health-centered. Hospital-centricity encourages relative inattention to homes care, ambulatory care, wellness care, longterm care, health coaching, health education and much more.

How about transition plan, get-well action plan or recovery plan instead of discharge plan? Discharge plan is about what we are doing, not about what the patient is doing.

And the word patient itself is suspect. Is a newborn child a patient? Are her parents attending parenting classes at an outpatient center patients? Does my 96-year-old mother living at home see herself as a patient? When healthcare professionals teach a factory work team to lift in an ergonomic way, are these workers patients? No, and, in fact, they’re trying to avoid BECOMING patients. The term patient works in a healthcare system focused on making sick people well, but it does not work well to describe people who are well and who seek to maintain optimal health and prevent illness. Increasingly, I hope, people will rely on the healthcare system to help them achieve the best possible health, wellness and state of being possible for them throughout their lifetime. We need to focus on person experience, not just the patient experience.

Do we want people to view experiences like these as something a part from the healthcare system? People ARE having a healthcare experience; they are relying on us as members of their healthcare team. I think it’s time we help people see health, wellness and prevention in whatever setting as part and parcel of the healthcare system. Wellness care is what we need. Disease management is what we have. Disease management is for patients. Wellness care is for people.

And while patient and family-centered care is better than patient-centered care, person-centered care is even better.

Words That Impact Behavior in the Moment

Language even affects our behavior and empathy. I no longer talk about "difficult people.” I now think and say difficult-for-me-people or distressed people so I can approach people with loving-kindness, patience and compassion.

Language matters. That’s why my colleagues and I just renamed our company Language of Caring, LLC. We are fanatically committed to helping everyone in healthcare speak the language of caring so patients, coworkers, persons, or whatever you want to call people, feel our caring in every conversation and every interaction 24/7.

Wendy Leebov is a lifelong activist for creating healing experiences for patients, families and the entire healthcare team. She is internationally respected as a thought leader, healthcare executive, culture change strategist, coach and author who has helped hospitals, health systems and medical practices to achieve breakthroughs in the patient and family experience. Wendy is Managing Partner, Language of Caring, LLC.

Tags:  caring  engagement  healthcare  language  patient 

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