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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, contact michelle.garrison@theberylinstitute.org.

 

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Where’s My Casserole?

Posted By Glenn Kopelson, Monday, April 2, 2018
Updated: Monday, April 2, 2018

Did you know that 18%1 of the population has a mental health condition?  Did you also know that 11%2 of the population has heart disease? There is less heart disease in the United States than people with mental health disorders. With mental health issues more  prevalent than heart disease, why are mental health patients and families stigmatized?

Recently, the stigma associated with a mental health disorder affected me in a very profound way. I’m familiar with mental health issues because my family has a history of depression and anxiety, but in 2016 my 14 year old daughter had a suicide attempt and we were exposed to the stigma in a way which was new to us. Our journey started with my wife and I rushing my daughter to the emergency department where she had another three visits over the course of four months and was also admitted to the psych ward each of those times. After her time in the hospital, she spent the next several months attending a daily intensive outpatient program for adolescents. Next she spent one month living in a residential treatment facility. She spent the next six months at home enrolling in online schooling. With many doctors visits for medication management and one-on-one therapy in addition to group Dialectical Behavioral Therapy, she was able to integrate back into High School this year. I’m happy to say that she is doing much better as her suicidal ideations have diminished thanks to all the care we received over the past year. It’s been a long road to recovery and it would have been easier had stigma not been a part of her journey.

Unfortunately mental health disorders are viewed as embarrassing. It’s embarrassing for the patient, but also for the family because the subject is viewed as taboo by friends and family. This isn’t the case with other illnesses. Why is having heart disease less embarrassing than suffering from depression? Why is taking Lipitor more acceptable than taking Prozac? My family was faced with an ambush of gossip and innuendo. Your friends and family think, “they must be bad parents because they didn’t know what was going on with their daughter.” Moreover, what do I tell people at work? They surely won’t understand that I need time off to care for my daughter  I can’t say anything at work because then it will go through the rumor mill and I don’t want to deal with all of that office craziness. Sure we received support from some of our friends, but for the most part, people were scared to talk to us because this was a mental health issue. 

In addition to the stigma that my wife and I experienced, my daughter went through her own pain with shame caused by her friends.  She was now labeled the crazy girl who was admitted to the psych ward. Teenagers perceive the psych ward as a place where crazy people are in straight jackets because that is how it is portrayed in the movies. A psych ward is a far cry from the depiction in movies like “Girl Interrupted” or “One Flew Over the Cukoo’s Nest.” So the stigma is perpetuated in the movies and television which does a disservice to how therapeutic a psych unit actually works and looks. In addition to fighting to heal herself, she had to navigate through misconceptions and the pressure that adolescents go through with their peers.

Let me provide a little more context to our journey with stigma that my family experienced. My next door neighbor was recently diagnosed with cancer. She told me that she has more casseroles in her freezer than she knows what to do with. Another friend of mine, whose father has terminal cancer, decided to take his dad out of the hospital so he could spend his final days at home. He too has a refrigerator filled with casseroles. My daughter suffers from depression, anxiety and PTSD and was admitted to the hospital for over a month. WHERE IS MY CASSEROLE? Of course I’m not really looking for a casserole, but for people to understand that mental health issues should be treated no differently than other medical disorders. They should be discussed with the same compassion and thoughtfulness that people provide to those suffering from all other ailments. 

Let’s eradicate the stigma associated with mental health by seeking to talk openly and honestly about the issue. There are a few simple things you can do to help:

  • Don’t be afraid to talk about mental health, but educate yourself and embrace that this is a common disease that affects nearly all families.
  • Know that mental health is a disease, just like diabetes, heart disease and cancer.  
  • Most importantly show compassion.  It’s amazing how far a little compassion helps a family or person with mental health issues.
  • Finally, if you know someone with a family member with mental health issues, perhaps you can make them a casserole.  Here’s a helpful website to get you started.  https://www.delish.com/cooking/g1702/casserole-recipes/

1 Substance Abuse and Mental Health Services Administration
2 Center for Disease Control

Glenn Kopelson is Co-Chair of the UCLA Resnick Neuropsychiatric Hospital Patient Family Advisory Council where he works on issues to improve the patient and family experience.

Tags:  compassion  mental health  patient experience  perception  stigma 

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Taking the Long View of Patient Experience

Posted By Allison Chrestensen, MPH, OTR/L, Friday, February 16, 2018
Updated: Friday, February 16, 2018

If you’ve listened to the patient experience conversations over the last decade, you know that much of the focus is on what happens inside hospitals (and on hospital grounds) and to a lesser extent, in outpatient clinics and doctors’ offices. And while The Beryl Institute’s definition recognizes the patient experience is shaped by a diverse group of professionals and occurs “across the continuum of care”, most of the operational focus around patient experience is on what happens within the walls of the hospital. My own patient journey, as well as my work as an occupational therapist helping patients to regain independence after illness, has taught me that it’s what happens after a patient leaves the hospital that is perhaps the most challenging part of the continuum of experience.

My first significant patient experience occurred when I suffered sudden cardiac arrest in 2013. I was unconscious during the acute phase of my illness, so my perspective is of the long recovery process, which I view in two separate phases. The first phase took place in the hospital where a team of healthcare professionals cared for me around the clock. There were people who kindly addressed my questions, even the ones I asked no less than four times; who asked how I was doing and seemed to actually want to know the answer to the question; who knew my husband by name and greeted him as they changed the bed linens and emptied the trash; who collected my meal card and patiently listened to my complaints about how a pureed dinner roll tastes nothing like real bread. There was my clinical team to whom my husband and I felt enormous gratitude for saving my life. My physicians thoroughly explained the plan to insert an implantable cardioverter defibrillator (the only treatment option for sudden cardiac arrest), a device that constantly monitors my heart rate and will deliver an electric shock if ventricular defibrillation is detected. I remember feeling very safe and secure—all of my concerns alleviated, my questions answered (or at least the ones my post-coma brain could generate at the time). I was discharged home the day after my ICD surgery.

All of that care and attention came to an abrupt end with the second phase of my recovery, which began once I arrived home from the hospital. The flurry of activity and round-the-clock care stopped, my husband went back to work where he admits he spent more time worrying about my wellbeing than he did on actual work tasks. Soon after I arrived home, I began conversations with my own employer about short-term disability, coverage for my job responsibilities, and all sorts of other details I felt unprepared to address. My friends were raising children, planning vacations, and going after promotions at work. I was fearful of going to the grocery store, afraid that I might collapse to the floor in the cereal aisle while this foreign device in my chest delivered a series of electric shocks.

In that transition time between experiencing a catastrophic illness and attempting a return to normalcy, my husband and I were left on our own to process our experience and its impact on our lives going forward. That, to me, was far more challenging than having my blood pressure taken every hour, waking from a deep sleep for a needle stick, or understanding a 10-page after visit summary.

It was only after I began to adjust to this new reality as a cardiac patient that feelings of resentment that began to overshadow my sense of gratitude for the life-saving care I received. Rather than choosing the best treatment option for myself, I began to feel that I had given consent to the treatment plan my physicians wanted for me. Note there is a significant difference in designing a treatment plan for the patient and designing that same treatment plan with the patient. Granted, in my case, the only other option would’ve been to have no intervention at all, a hard option to consider for a thirty-something-year-old woman who is at risk of experiencing another arrest in the future. As someone who likes to feel in control of her own health and wellness, however, having the opportunity to discuss this admittedly less desirable option with my team would’ve made all the difference to me as I navigated the path of recovery.

My own experience taught me that when the proverbial dust settles, the “what now?” question remains for our patients. This is an important facet of the patient experience, and it is directly impacted by what happens (or what doesn’t happen) during the patient’s time in the hospital. The extra five minutes that the physician or nurse spends asking about a patient’s values, hopes and fears can mean the difference between feeling like a number and feeling like a person. The compassionate actions of the environmental services and dietary staff, the rehabilitation and nursing teams, all create impressions and emotions that patients and families take with them into their recovery. For the patient, these actions can make the difference between feeling powerless to manage a chronic illness or cope with an unexpected health scare and moving forward with new perspective and determination.

This is the “long view” of patient experience—the awareness that our actions as healthcare professionals have far-reaching impact. We become part of the patient’s story. My patient story is about the pain of losing control of my wellness and my decision-making power in the midst of immense gratitude for receiving miraculous, life-saving care from dedicated professionals. It is also about the care and compassion that my care team showed to me and the way that fueled my desire to derive meaning from my experience and to make a contribution in this field. I am a patient. However, a patient is not who I am.

Taking the “long view” of patient experience work helps us to realize the true impact of “the little things”, and it may just help each of us to reach beyond an organizational commitment to excellence and toward an individual commitment to doing good.

Allison Chrestensen is the founder of Tandem Healthcare Solutions, a consulting firm specializing in co-designing experience improvement for patients and staff, using the Experience-Based Co-Design model. Allison brings her perspective as a clinician, patient, and quality improvement project leader to her work and has served in project leader, faculty and advisor capacities for healthcare organizations around the U.S., U.K., and Canada to facilitate building innovative and sustainable models for partnership with patients and community members.

Tags:  care plan  compassion  empathy  patient experience  transition 

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Paws and Presence: The Story of “I’m Here”

Posted By Marcus Engel, Monday, July 17, 2017
Updated: Monday, July 17, 2017

I can’t remember the impact, but I remember the headlights. Then, the pain. The all-encompassing horrors of broken jaws, crushed facial bones and desperate attempts to breathe.  I remember the metallic taste of blood mixed with gasoline. Then…the  blackness. But, how could I know that darkness was permanent? How could I know that I was now blind?

I can’t remember the medics, the crike, the ambulance speeding to Barnes Hospital, but I remember my clothing being cut off. And, I remember Jennifer. 

Throughout that wretched night in the ER, Jennifer held my hand and never left my side. Her presence and her words, “Marcus, I’m here…” were the only things she could have done to help…and they were exactly what I needed.

Throughout the hospitalization and recovery, rehab and 20 years of life, I knew nothing else of Jennifer. Her story is in my memoir and “I’m Here: Compassionate Communication in Patient Care.” But, beyond that night? I knew nothing. No last name, not her position in the ER. Nothing.

Two years after the trauma, as a 19 year old, I found myself in Morristown, New Jersey, training with my first Seeing Eye dog, a black lab named Dasher. Some people measure life in years. I measure life in dogs. Dasher was by my side for seven years. When he retired at age nine, I thought my heart would break. I’d lost my sight, so I thought I knew what loss was…but I was wrong.

Life goes on. We all know that. Dasher’s retirement ushered in another black lab, Carson, who was with me for another seven years. Then came Garrett; a yellow lab who, if you’ve heard me keynote since 2010, you’ll probably remember.

Soon after I picked up Garrett’s harness for the first time, we moved to New York City where I began my Narrative Medicine Master’s program at Columbia University. As I continued keynoting around the country, Garrett was by my side for countless flights, hotel rooms, hospitals and conference centers.    

Then, Barnes-Jewish Hospital, the facility that saved my life, invited me to speak. As always, I told the story of “I’m Here” and Jennifer. Afterward, a member of the patient experience team approached and said words I’ll never forget: “Marcus, we have a surprise for you… we found Jennifer.”

Shock. Disbelief. Confusion. I was nothing short of a blubbering mess as I, for the first time in 20 years, held her hands again. Finally, I got to say thank you.

Weeks later, Jenny and I were interviewed by the St. Louis Post-Dispatch.

The journalist asked lots of questions, including, “How long have you had Garrett? How long do Seeing Eye dogs work? Where will Garrett go when he retires?” 

Seeing Eye dogs work, on average, seven to nine years. Provided Garrett stayed healthy, we would be together around four more years.

“Will you keep Garrett when he retires?” she asked.

“No, I’ll then get another dog and need to focus all my bonding on the new pup. That’s not fair to Garrett, so I’ll find someone who wants to adopt him.”

Jenny practically jumped out of her seat declaring, “I want him!”

“For real?”

“Absolutely, I would love to have him!”

“Done,” I said. “I can’t imagine better hands.”

Last December. I laid on the floor of a hotel room, thanked Garrett over and over for being mine, for keeping me safe and for his unconditional love. Tears fell onto his velvet ears. Then, a knock at the door.

I hugged Jenny, fell to my knees and held Garrett one last time.

As Garrett and Jenny walked out, all I could think of was love. Love. Compassion. Presence. That’s what I received from Jennifer on the worst night of my life…and that’s what Garrett gave throughout his working life. It is a model of what all truly excellent patient experiences are comprised.

Marcus Engel, M.S., CSP, CPXP is a Certified Speaking Professional & author whose messages provide insight and strategies for excellent patient care. As a college freshman, Marcus Engel was blinded and nearly killed after being struck by a drunk driver. Through two years of rehab, over 350 hours of reconstructive facial surgery and adaptation through a multitude of life changes, Marcus witnessed the good, the bad and the profound in patient care. Marcus and his wife, Marvelyne, are the co-founders of the I’m Here Movement, a 501(c)3, which is changing the culture of care with two simple words.

 

To hear more from Marcus, join us August 15th for the upcoming webinar, Presence: Compassionate Communication Through Everyday Mindfulness or September 15th for our Regional Roundtable event in Ontario.

Tags:  compassion  empathy  patient experience 

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The Patient Experience as the Ethos of Nursing

Posted By Susan E. Mazer, Ph.D., Tuesday, January 24, 2017

The key to the optimal patient experience is sustainably grounded in the ethos and practice of nursing.

From Florence Nightingale: “I use the word nursing for want of a better. It has been limited to signify little more than the administration of medicines and the application of poultices. It ought to signify the proper use of fresh air, light, warmth, cleanliness, quiet, and the proper selection and administration of diet -- all at the least expense of vital power to the patient.”

To nurse someone to health makes us think of specifics images of caring, as well as any number of tasks and responsibilities. The professional nurse, however, does so much more with skill, knowledge, and in-depth commitment. 

When Nightingale wrote this, she was writing a job description of one person. However, in current healthcare organizations many of these tasks wind up being handed to environmental services, housekeeping, and dietary services. Further, a nurse aid or CNA might also take over bathing patients and providing blankets.  

Yet, there is higher risk with the nurse not doing the bathing and not observing patients except at medication time. Nightingale often wrote about how a patient would perk up when the nurse walked into the room, but such a burst of energy was for performance or out of pride. A skilled and trained nurse would see past this to actually understand what was happening with the patient.

The result is that, for patients, many people are involved in their care, with the nurse administering medications and performing a variety of clinical tasks. What’s more, nurses do all the work of tending to medical needs according to what physicians request and, as well, what they see.  

For patients, each person that enters their room performing any of these roles carries the mantel of nursing. Because of this, it is common for patients or family members to ask whichever staff person is in the room about the next pain medication, meal, or any number of other things. 

If you ask patients who is the most important to their recovery, they will tell you it’s the physician and the nurse. They tolerate the system that sends in surrogates, but become frustrated with the inconsistency in quality and authority.

Where is Nursing Located in the Patient Experience?

Nurses have not yet been called to, called for, referenced, or sought out to lead us into a more humane model of care that has been codified in each nurse from the day they decided to go to nursing school. The patient experience is a nursing tradition of compassion and respect for the personhood of the patient. It is inseparable from what nursing is. 

Further, a subculture of nursing has formed without acknowledging its dilution of the patient experience/caregiver relationship. Patients now have one person to tend to taking their vital signs, another to respond to all their non-clinical needs, another to feed them, another to bathe them, and still another to get the “real” nurse. 

Each one of these individuals knows a piece of the patient only to the degree their position allows. The rigorous call to service that is the nurse, the attention to every detail that holds the clue to the patient’s pain and suffering is not part of this subculture. In fact, the tasks that a CNA or nurse aide performs are done with minimal understanding of what human caring is.  While they are considered non-professional assistants, to patients these individuals are in their room to care for them. And to do so with the highest regard for the patient and family.

In service to patients, the cohesive practice of caring should be consistent in all those who take on even a small piece of the total responsibility. Everyone, then, who enters into the domain of the patient is a nurse in the sense, as Nightingale expressed, that the health of the patient has been entrusted to them. Anything less is unsafe and inappropriate to the healing relationship and integrity of care.

Nightingale wrote that the task of the nurse is to make sure that her patient is cared for exactly as she would if she is not there, for any reason at all. 

She wrote, “Let whoever is in charge keep this simple question in her head (not, how can I always do this right thing myself, but) how can I provide for this right thing to be always done?” 

And Then Came HCAHPS

The HCAHPS survey makes visible what Nightingale acknowledged 150 years ago and is the mandate of Watson’s Theory of Human Caring. 

HCAHPS surveys begin with questions about physicians and nurses speaking to the patient with respect. Nightingale wrote this about how to speak to a patient:

“Always sit within the patient's view, so that when you speak to him he has not painfully to turn his head round in order to look at you. Everybody involuntarily looks at the person speaking. If you make this act a wearisome one on the part of the patient you are doing him harm. So also if by continuing to stand you make him continuously raise his eyes to see you. Be as motionless as possible, and never gesticulate in speaking to the sick.”

Respect has many meanings, each unique to the individual and the situation. However, holding the patient in the highest regard was a founding tenet for the Nightingale nurse. She wrote about how not to strain the patient, how to acknowledge by one’s actions that the patient’s comfort was primary to the conversation.  At that time, and even today, this is a demonstration of respect.

Many nurses have no idea what HCAHPS is other than memorandums coming from others.  They are removed from the other side of HCAHPS because the ethos of their practice disavows disrespect for the patient, for the family, and for each other. And, what HCAHPS measures is already within their professional mission and practice.

As we continue to move into greater depth of our understanding what the patient experience is for the patient, those who care at the bedside must be acknowledged and supported. The key to the optimal patient experience is, again, in the ethos and practice of nursing. It is in the mission of caring merged with skill and knowledge that is in the core of each nurse that we will find answers to how to respect and heal patients into wholeness.

 

Susan E. Mazer, Ph.D. is the President and CEO of Healing HealthCare Systems®, Inc., which produces The C.A.R.E. Channel. In her work in healthcare, she has authored and facilitated educational training for nurses and physicians. Dr. Mazer has published articles in numerous national publications and is a frequent speaker at healthcare industry conferences. She writes about the patient experience in her weekly blog and is also a contributing blogger to the Huffington Post’s "Power of Humanity" editorial platform, dedicated to infusing more compassion into healthcare and our daily lives.

Tags:  compassion  HCAHPS  healing  heart of healthcare  nurses  patient care  serve  tradition  wholeness 

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Rounds for Change

Posted By Irene Brennick, Monday, April 25, 2016

As a volunteer director, I often make patient rounds with my CNO. At my hospital, staff and volunteers alike make patient satisfaction a top priority. We frequently round on patients, not only to assess their needs, but to also find out what didn’t go right so we can learn from it, correct it and make things better for everyone. During one particular interaction, I discovered how easy it can be to change a patient’s perception of the hospital from negative to positive.

My CNO and I walked into a room and encountered a female patient and her husband. We inquired about their experience, and their response revealed an opportunity for improvement. The woman said she was admitted through the emergency room, sent to another unit and finally arrived at the room she was currently in.

The patient told us how sick and scared she was. Her experience in the ER was somewhat of a blur, but she remembered very clearly an abrupt nurse in one of the units. She said the nurse didn’t listen to her, and her husband echoed the lack of attentiveness on behalf of the nurse. Once she was brought to her private room, however, she said she had received nothing but the best treatment.

After she recounted her story, my CNO told the patient "I am very sorry to hear that, because what I hear is that the care is very good. I will investigate the situation, and again, I am sorry.” I too have always heard about the exceptional treatment people receive in our facility, and was quite surprised to hear anything negative at all regarding the care. This patient and her husband started to protest a bit stronger. They repeated their story about how the nurse treated them in the unit.

I thought to myself, remember it is the patient’s perception of care and sometimes we have to do our best to make the patient experience better. When this patient goes to fill out a patient satisfaction survey we want to have eliminated or decreased the negative impression of our hospital. Before we left the room, I looked closely into the woman’s eyes and simply said, "I’m sorry you believe you didn’t receive the treatment you deserved. It’s not ok, and we need to do better.”

I wanted to let the woman know that I too heard her. If I were a patient and felt I was not treated compassionately, I would be upset as well. What happened next was pretty amazing. As we started to get up and walk out, the woman said, "Well, people are only human and everyone has a bad day. I don’t want to get anyone in trouble and really my care was very good.” At that moment I knew, just by being heard and acknowledged, the woman went from being upset, to all smiles, as she chatted about how she was feeling much better and hoped to be discharged soon.

I learned that day that making rounds is very important and we must really listen to what our patients are telling us. If a patient claims to have had a bad experience, they had a bad experience. It is our job as hospital staff to make the situation better, rather than be defensive. It is much better to just listen to our patients. Their information is a gift, and we should acknowledge their concerns. We should apologize, investigate and correct. Only then, will our patients begin to forgive any imperfections that occurred during their stay, and they could even become our greatest advocates. We want our patients to have the best experience when in our facility.

Since 2003, Irene Brennick has managed over 700 volunteers at Los Robles Hospital in Thousand Oaks, California and puts on health and education events as their Director of Community Services. She has a total of 24 years of experience developing and implementing dynamic volunteer programs. She has also addressed tens of thousands of people and her story has been featured in the L.A. Times, Daily News, and on television and radio. Ms. Brennick also speaks on topics that include, finding one’s purpose in life, the importance of giving back through volunteerism, and how anyone can be an inspirational public speaker.

Tags:  compassion  leadership  listen  patient advocate  perception  rounding  volunteer 

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How Did Dr. Dean Edell Save My Life?

Posted By Lee Tomlinson, Wednesday, July 23, 2014
Updated: Monday, July 21, 2014

"Life begins on the other side of despair.” - Jean-Paul Sartre

Did you know that hopelessness is the leading risk factor for suicide in cancer patients? Did you know that doctors have the highest suicide rate and nurses are the second most unhappy professionals in America?

Why so much despair?

Imagine being a cancer patient and feeling so dehumanized by your hospital care that you plan to commit suicide; no sense that you are in the hands of people who see you as a person, acknowledge your suffering or treat you with simple dignity.

I’m a C-level executive, author and internationally recognized speaker on customer service and the bottom line. Until my battle with Stage 3+ throat cancer, I assumed that customer service in healthcare (a patient’s experience) had some impact on profitability.

What I discovered, however, is that customer "compassion” can be a matter of life and death for patients, as well as caregivers and the institutions in which they serve. At my lowest point, hospitalized in a top-tier hospital with a life-threatening infection, my care was insensitive, unkind and totally lacking in human compassion.

Once, while waiting for a doctor to remove my infected PICC line, I heard him berating a nurse outside my door. When they came in, she appeared humiliated and I was terrified he’d treat me as insensitively. Sure enough, as he began, the pain was excruciating and I begged him to stop. He shrugged me off. "This will only take a minute.” It took far more than a minute and was among the worst physical and emotional pain I’d ever experienced.

When a dead gecko lay next to my toilet for three days, all I could think about was filth and infection. When my fever spiked and my room was sweltering, I was told to "call maintenance.” Frustrated, I rasped into the phone it was "so damn hot” in my room. The maintenance guy said, "Calm down and call back later” and hung up. Humiliated, I called back and he said he’d "get to it tomorrow.”

I have wonderful friends, but oddly, none came to see me. When I received a "Thank You” note from the hospital, I understood why. Over the whiteout on a used envelope was my name, but it began "Mrs.” (I’m a Mr.), was spelled wrong and had the wrong room number. My friends had been told I wasn’t there. I didn’t exist. Dozens of experiences like these pushed me from depression to despair and thoughts of suicide.

My will to live was restored by Dr. Dean Edell, America’s original "Media Doctor” and dear friend. I asked him, "If I use all these pain killers, will I die?” He said yes, but strongly proposed an alternative. He said, "Why not fight to live and combine your customer service knowledge, business acumen and patient experiences to become part of the solution?” Instantly I took his advice and am convinced I am alive today to do just that.

I have come to understand that:

  • Compassion has a measurable impact on healing and the will to live.
  • Healthcare providers are under enormous stress, and they deserve our compassion and gratitude.
  • All I care about now is that ALL patients receive the compassionate care they so desperately need and deserve.

So I ask, "What will it take for all institutions, physicians, and every person who touches us to see us not only as individuals and valued customers, but also see that every minor miracle of compassion alleviates our mutual suffering, reaffirms our shared humanity, and, over time, makes its way to the bottom line?"

Lee Tomlinson is a C-level executive, author and internationally recognized speaker on customer service whose life is devoted to improving the patient experience to benefit patients, healthcare professionals and the bottom line in hospitals in which they serve. Lee combines spellbinding speaking skills with in-depth business skills to reconnect, re-inspire and re-engage healthcare professionals to "up their games” when it comes to patient-centered care.

Tags:  compassion  Customer Service  despair  hope  Patient Experience  physician 

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