Humanism in Medicine Essay Contest Winner David Duong On Fear, Trust & the Love That is Patient-Centered CarePosted: November 25, 2013
A recent post on the AAMC blog AM Rounds, 2013 Humanism in Medicine Essay Contest: Caregiving As Good Doctoring, shares a recorded version of David Duong’s essay of the same name. Duong, a third year student at Harvard Medical School, earned 2nd place in the Arnold P. Gold Foundation sponsored contest by responding to the call for essays reflecting on “…the barriers to humanism in medicine today…and…who the ‘good’ doctors are.”
In his essay, Caregiving as Good Doctoring, Duong shares the fortuitous experience of serving as translator by default, being the only Vietnamese speaker available to a family in need of assistance at his training hospital. The patient, Mr. N, was flanked by eight family members all earnestly trying to understand options around end-of-life care for their father succumbing to Stage IV colorectal cancer. It was his job to gently translate details and options given by the attending physician, and as he describes, guide the family through this emotional time.
As Duong retells the story of his time with Mr. N’s family, it is apparent he has learned firsthand the personal and professional ‘benefits’ that result from more intimately participating in the healthcare journey of patients. Following are excerpts, but the full essay is one worth reading in its entirety, as well as shared with caregivers young and old throughout the health sciences. Research may exist that supports empathy to be lost by the third year of medical school, but Duong’s words that follow speak to an awareness and empathy of someone firmly grounded in what it means to “walk with you and yours through this (healthcare) journey”. Enjoy!
…In this intimate role as a caregiver, I am reminded of a phrase in Vietnamese that people offer each other at grave moments, when life seems beyond our control, when long-fought battles are lost, or when death takes its final grip: “chia buồn” or “share in the sorrow.” The phrase means that we share in the emotions, the experiences, the bullets that life fires at each of us. The phrase, gently intoned, is intended to ease the burden, to say, “I am here and will walk with you and yours through this journey”…
…What an honor, a privilege, and at times a burden, it is to undertake a profession that constantly invites us to engage and intersect with humanity at its most fragile moments. Therefore, it is our privilege and responsibility as good doctors and medical caregivers—along with our colleagues in social work, chaplaincy, and nursing, among many others—to strive to deliver the best care to our patients. In Dr. Francis Peabody’s statement to the 1925 graduating Harvard Medical School Class, he averred that “the secret of care for the patient is in caring for the patient,” which resonates with our 21st-century mainstream society rhetoric of the “patient-centered” approach. It is not surprising, then, that the highest ideals in medicine have remained constant…
..Throughout my third year of medical school, I have realized that there is no medicine to alleviate fear—the fear of illness, the fear of your body in someone else’s hands, or the fear of dying. But I have also learned that by caring for the patient, by placing the patient at the center of our medical practice, we can establish a trust relationship that just might lessen that fear. By doing so, we humanize our practice, share in the life of our patients and, in return, grow more deeply human…
Anna Quindlen is someone I have long admired. An aspiring journalism undergrad student, I read Living Out Loud almost twenty years ago, and was inspired by her need to share ‘the story’, as well as her ability to make a successful career out of doing so. Now, a well-known and respected Pulitzer Prize winning journalist and repeat best-selling author, Quindlen recently shared her wisdom and words with healthcare leaders–young and old–at the annual AAMC meeting in Philadelphia. It comes as no surprise that the accolades and tears shared in the Storify snapshot of tweets from her talk show organizers made an excellent choice by inviting her to speak. (Click image to go to Storify page if interested).
For those who missed her talk, Quindlen has given permission to the Arnold P. Gold Foundation to make the full text of her speech available until December 3rd, and it can be found here. Having read the transcript, I wanted to share some of the highlights in the event the tyranny of the daily takes priority and prevents the well-meaning click-through before 12/3.
Per her transcript, Quindlen shared the following:
- The story of a repeat surgery she recently underwent, along with the differences in the care she received from her anesthesiologists. Do you know who I am? is the takeaway for providers listening in, as the care team who understood her needs, values, preferences and goals knew who she was–someone who did not want a general anesthetic–and that made all the difference.
- The similarities between healthcare and journalism, and how in this day and age of technological advancement and depersonalization it is still the ability to hold the gaze of a fearful patient that makes the greatest impact.
- The story of the care her father, the patient, and she, the patient advocate, both received as they navigated and negotiated his stay on a burn unit. This story alone is worth the time for the click-through above, but in short, her father’s care team acknowledged and appreciated the knowledge she brought into the room, and as a result her father’s care plan was developed with the family’s needs, values, preferences and goals as the foundation. And while she says that the care he received was best-in-class, it was the social worker who stopped in to ask how they were doing, the nurse who played music for her father when she could not be present, the doctor who expressed three times his understanding of how hard it was to make the choice for palliative care, and the sympathy card she received from the staff, that stay with her now. But perhaps most important of all, she shares that her father’s care team:
…gave me a sense of power and control in a situation in which I was bound to feel powerless…they put a human face, a series of human faces, on my father’s care.
- And finally, she shared four “simple” takeaways for the audience: 1) Try to be present and in the moment 2) Acknowledge uncertainty 3) Practice empathy 4) Try to be kind
As news outlets continue to talk about patient harm, pushing for accountability and bantering about frequency, a more subtle form of harm occurs more frequently and is not meaningfully measured. That harm is steeped in the missed opportunity to know the patient. Providers fail patients on a human level because care providers are human, and humans caring for humans is far from a perfect science. Maybe it’s also about patients resetting expectations and not setting themselves up to be disappointed by, as Quindlen refers to, MDietys that are in fact just people like them. The four simple truths or takeaways she mentions are things all of us, patient–provider–caregiver–sister–son–father–boss–administrator, can ascribe to and make any encounter–healthcare or not–a better one.
Thank you, Anna Quindlen, for continuing to inspire others with your words!
So many of the healthcare stories shared in the mainstream are those that focus on patient harm, or egregious behavior by providers. It can make us forget that while these occurrences are still far too frequent, they are not the norm. For every patient harmed, there are roughly three success stories rarely shared. Stories of care teams, often operating in systems yet to be designed for optimal success, who manage to use the wonderful technology, knowledge and compassion at their disposal to send a patient home safely. While every patient story is of great value, so are the stories of those care providers whose voices are less frequently heard. When patients and providers work together throughout the course of a healthcare encounter real magic occurs. Human connection has power to heal, and will always complement any prescription or treatment. And it costs absolutely nothing…
Here is one of those success stories, recently shared by a colleague. Melissa, a patient in the Vidant Health system, was found to have an aortic dissection immediately after giving birth to her son. She takes viewers on her triumphant and tear-jerking healthcare journey, and shares what made her experience with Vidant so positive, and successful despite the odds. Following are a few of those highlights for those who don’t have time to view the entire video:
- Melissa felt she was listened to by the care team
- She needed someone to be human and care, and that is exactly what her healthcare team did
- Someone cared enough to push harder within the system when her survival depended on it
Here is Melissa’s story, in her own words. There is a wonderful tribute to the healthcare team that was part of her “family” during this challenging time in her life. If you have time, it’s a wonderful story to hear and to share.
Last week at the National Quality Colloquium, I had the opportunity to share research and ideas around the use of stories and storytelling to change behavior. The audience’s engagement and the lively discussion that followed gave evidence to the growing number of healthcare providers openly looking to embrace the power of stories in their daily work. As a result, many are looking to learn how to share stories in a meaningful way, so that their healthcare mission becomes contagious. One way to accomplish this is to borrow the secrets used by successful CEOs and filmmakers, and apply the intentional structure they use to weave what often feels like magic beneath their words. Peter Guber, film producer (Rain Man, The Color Purple) and author of Tell to Win, lays out a simple plan to craft stories that both move and captivate listeners in a Harvard Business Review article from 2007, “The Four Truths of the Storyteller“. Simply put, good storytelling requires:
- Staying true to the teller
- Staying true to the audience
- Staying true to the moment
- Staying true to the mission
Following is a video example of how TOMS CEO & Chief Shoe Giver, Blake Mycoskie, not only thanks his customers, but shares his mission in a way that captures the heart. For those who don’t know TOMS, it is a philanthropic-driven, hip shoe company that matches every pair of shoes purchased with a pair of new shoes given to a child in need. Storytelling is so important to TOMS mission that they have an entire section dedicated to their stories on their web page. Click here for more examples of stories that stay true to the TOMS mission.
Healthcare providers have been traditionally trained to distance themselves from the potential heartache of delving too deeply into each patient’s story, but that appears to be changing as medical humanities and narrative programs are growing across the country. As we search for ways to make the culture of medicine more inclusive, inviting patients to partner in their care includes a better understanding of their stories–who they are and what matters to them–as well as a willingness to step outside the comfort zone for some. Writers and filmmakers understand all too well where our comfort zones lie, and push us to those limits in ways that often leave us begging for more. Whether or not you saw the 1998 movie, Patch Adams starring Robin Williams, based on the experience of physician Hunter “Patch” Adams, MD the screenwriters deliver a fitting line of dialogue for this storyline:
You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.
Interesting to note that the real Patch Adams was seen as an outlier for staying true to his mission–patient-centered care–long before its time.
In a recent AM Rounds post, Not the Story: Medical Students’ Reflections on the Patient-Doctor Relationship, author/singer/medical student Jessica Bloom, shares a clip of an original song inspired by the patients and families visited during M1 and M2 years in the University of Michigan Family Centered Experience Program, run by Dr. Arno Kumagai. The trio of songwriters/performers/medical students, as well as their 1st & 2nd year medical school colleagues, came to better understand the needs and desires of patients and families dealing with chronic conditions by spending time in the homes of volunteer families, learning more about their patients as people in order to better understand what it is like to experience illness. At the end of their second year, the medical students are required to create an interpretive project of this experience, and many turn to the arts to not only express the voice of their patients, but also their new-found understanding of medicine from the patient’s point-of-view.
It’s worth a quick click to hear the clip — poetry unintended.
Stay tuned for more information to come on the growing number of medical humanities programs across the country…
For more than 25 years I have had the pleasure of calling Jerod Loeb my friend. We lived down the block from one another as our families “grew up” together. Many who read this blog also know Jerod, or have worked with him at some point during his illustrious career. He has been a leading international expert in healthcare quality and safety for decades, and he has taught me much through his leadership. His wife Sherri is also a good friend of ours. She too has spent her entire professional career in healthcare as a registered nurse. I wanted to share part of a recent article about the Loeb family’s personal journey through the healthcare system. Many of Jerod’s academic writings can be found in leading healthcare journals, however this piece, was published in their community newspaper.
Ironically, they will now tell you it wasn’t until Jerod was diagnosed with cancer that they both realized how much they did NOT know about healthcare. The Loeb’s personal experience has made them realize that drastic changes need to be made in healthcare administration. To that end, Jerod and Sherri are making it their personal challenge to educate others on how to best navigate the healthcare system as patients. Below Sherri describes some of her thoughts in relation to this dreadful disease:
“How do you ever start to explain the changes in your family’s life when someone is diagnosed with stage IV metastatic cancer? What was a perfectly normal life, changed on a single blood draw two years ago. From a PSA of 1.2 to 535 in one year. The prostate cancer had already spread out of the prostate and throughout the bones. It was too late for surgery. Two highly educated health care individuals were suddenly thrust into the sharp edge of the medical system. Through standard treatment, clinical trials, having to travel 1000 miles for care that looked beyond the “standard of care”, we have done it all. Throughout this journey we have learned many things:
1. Diseases don’t read textbooks – thus what may be appropriate care for some is not for others.
2. Although you may be extremely bright and knowledgeable once you enter the health care system as a patient you tend to become deaf, dumb and blind.
3. The need for patient advocacy and family engagement is crucial for the best care possible
4. Communication is vital. Without it everything else is lost.
5. Epidemiologists who decide that PSA screening is not important need to look at patients individually and not make a generalized statement.
6. Shared decision-making is the only way to appropriately approach care.
7. Stop treating patients like they are simply an icon on the computer and remember they are a person, with hopes, dreams and families.
8. Patient safety is not something to take haphazardly. Without it patients die or are harmed unnecessarily.
Many times, the most important educational messages we need to share in our teachings are not found in the traditional p-valued, statistically significant healthcare research articles we like to reference. The best learnings can be found in a neighborhood journal that incorporates the patient’s perspectives and needs into the educational moment.
The Telluride student, resident and alumni reflections on our sister blog, Transparent Health, provide student perspectives on the patient safety teachings shared during their week at Patient Safety Summer Camp. For many, it is the first time they are exposed to some of the challenges found in healthcare. Matthew Waitner, M2 at Georgetown University, who attended our first Telluride East session in Washington DC, shared his thoughts after digesting some of this content in a TH post, Trust and Safety in Medicine: Part One,
Matthew’s words echo what many of us working in patient safety can feel from time to time. Those who have gone the distance, however, have learned to find like-minded colleagues to bolster a strength-in-numbers approach. Rick Boothman, JD, a regular Telluride faculty member, thought leader, and ever-present voice in support of patients, read Matthew’s post from a distance this year, and shared the following comment in response. Rick’s words continue to inspire all of us — faculty and students alike. Thanks Rick–we missed you this year!
I read with much interest the Telluride postings and I fully support Dave Mayer’s work which is deeply rooted in his conviction that though we might work hard to change the status quo toward improvement, you and your colleagues represent the very best shot we all have in making serious and durable change. We all have choices to make about how we spend the ultimate fixed resource – our time and passion; Dave has dedicated himself smartly where effort may yield the greatest benefit. His passion and commitment to the young is not misplaced and your post confirms the wisdom of Dave’s choice.
BUT . . . as we identify what is wrong and work to correct it, it is equally important not to lose our way and destroy what is right. Understandably, after a few intense days focusing on the negative, you ask “Where is the outrage?”
Patience is not always a virtue, especially where lives are at stake. Without question, we’ve been far too patient with ourselves and the problems we’ve known about for a very long time. We must move deliberately and courageously to fix what’s broken, re-orient what’s misdirected, rethink what’s no longer relevant or useful.
BUT . . . I worry that you and your colleagues will despair. That you’ll lose heart. That you’ll lose the drive and the dedication and the determination to salvage what is right while fixing what is wrong even before you get started. That you’ll give up before trying.
Do not get jaded. Do not despair at the magnitude of the problems to which you’re being introduced. Despite more than thirty years of supporting health care providers in their very worst moments, I see more miracles large and small every single day. I see the positive difference all of you make for all of us. In spite of your human frailties and imperfections. In spite of systems that are fundamentally flawed, outdated and challenged by an unbelievable array of perverse incentives.
Despite thirty years’ worth of opportunities to become cynical, I am humbled every day by all of you.
Our daughter just finished her second year in medical school and she’s in the midst of her clinical rotations – I will never forget the sense of awe I saw in her face as she excitedly described for me and her mom the first time she actually laid hands on another person and diagnosed a heart murmur. And the overwhelming sense of responsibility she also felt when that patient put her life, her hopes, her body in my daughter’s amateur hands. I hope she will never forget that either. As I lawyer, I can only imagine that every one of you has had similar moments in your training.
Self-flagellation may have its place somewhere I suppose, but I don’t think it’s very constructive in general. And being overly condemning only makes the status quo hunker down in defensiveness.
As Dr. Mayer and his colleagues introduce you to the multiplicity and magnitude of the challenges we have, never lose your sense of awe. Work consciously your whole career to hold that profound feeling in your hearts and minds no matter what. Be proud of what you’re part of. And treasure the awesome privilege you have to touch us and heal us and help us.
We are all in this together.
Executive Director of Clinical Safety
The University of Michigan Health System
The concept of “mindfulness” dates back more than 2500 years. In Sanskrit, it means awareness that, according to the teaching of the Buddha, is considered to be of great importance in the path to enlightenment. It is said that when we are enlightened, “greed, hatred and delusion have been overcome, abandoned and are absent from our mind and we are focused on the present moment and the reality of things around us”.
With the increased focus on High Reliability in healthcare over the past few years, we continue to hear more about the importance of mindfulness as a patient safety tool. I always thought of myself as being “mindful”. Anesthesiologists have to be “in the moment”, aware of the different cues happening around us in the operating room. However, through two simple examples recently, I learned a very important lesson from a longtime friend and mentor, Cliff Hughes MD, — that being mindful and aware of our surroundings is only half of the equation when applying mindfulness to safety.
For many years, I have had the great fortune of being a close friend and student of Professor Cliff Hughes. Cliff was a cardiothoracic surgeon for 25 plus years in Sydney, Australia before being elected CEO of the Clinical Excellence Commission (CEC) in New South Wales, Australia. From the CEC website:
(Cliff)…has been chair or a member of numerous State and federal committees associated with quality, safety and research in clinical practice for health care services. Prof Hughes has held various positions in the Royal Australasian College of Surgeons–including Senior Examiner in Cardiothoracic Surgery and member of the College Council. He has been a member of four editorial boards and has published widely in books, journals and conference proceedings on cardiothoracic surgery, quality and safety. Prof Hughes has a particular passion for patient-driven care, better incident management, quality improvement programs and development of clinical leaders.
Cliff, and his lovely wife Liz, were visiting from Australia this month, in part to attend our Telluride East Patient Safety Roundtable and Summer Camp in Washington, DC. As a result, my wife Cathy and I were able to spend some social time with Cliff and LIz, and with a consummate teacher like Cliff in the mix, the learning does not stop outside the four walls of a classroom or hospital. I share the following stories because they left such an impression on me, showing me that Cliff’s wisdom comes through living that which he teaches on a daily basis…
As we were walking through a local grocery store, we came across a small puddle of water on the floor in the produce section. I walked around the puddle, pointing out the potential safety hazard to Cliff following behind me. I continued walking, and it took about twenty more steps before I realized Cliff was no longer behind me. Instead of walking around the puddle like I had, Cliff had detoured to find the produce manager and show him the puddle so the safety hazard could be cleaned up. While I was mindful of Cliff’s safety in pointing out the puddle, Cliff was mindful of all others who would be following our same path and could suffer harm by slipping on the wet floor. Cliff acted on his mindfulness, and by reporting the event, helped prevent possible harm to others. I was mindful but didn’t act.
The very next day, Cliff and I were walking through a parking lot after a quick stop at a local Starbucks. I was in deep thought about our upcoming meeting. As we walked, we passed a parked car which I vaguely noticed had a back tire that was quite low…not completely flat, but would most likely soon be so with some extended driving. Momentarily noting the car, I kept walking, thinking about our upcoming meeting, Once again, Cliff disappeared and was no longer behind me. Instead, he was standing by the side of the car with the low tire, writing on a piece of paper. I walked back to where he was standing, and asked what he was doing. He said he was writing a note to the car’s owner, alerting the driver of the possible safety concern. Finishing the note, he placed it under the windshield wiper, clearly visible to the driver. Again, I noticed the potential safety hazard but was distracted by my own thoughts and priorities, and kept walking. I wasn’t fully ”in the moment”, a prerequisite of mindfulness. Cliff, however, was fully in the moment. As such, he was able to not only notice potential safety risks, but also to report each incident and act to prevent possible harm to the driver and grocery shoppers.
Two simple, but thoughtful, actions became perfect learning moments for me, role-modeled by a masterful safety “Sensui”. Mindfulness without action is stasis.
Healthcare needs more Cliff Hughes’…
Hugh Hart (@hughhart) recently wrote an article for Fast Company (@FastCoCreate), Movie Meltdown, $100 Tickets, And Dream Control: Lucas and Spielberg Forecast The Future Of Entertainment. In the piece, Hart shares eleven predictions made by the two storytelling geniuses, illuminating what the future of the big screen might, and might not, look like.
Becoming part of the movie, tapping into dream-tainment, games melding with movies and sensors taking the place of joysticks, controllers and devices insert audience members directly into the movie-going experience in the not too distant future. Big movies will garner higher ticket prices. Niche audiences will support indie filmmaking careers. I like the sound of this —
But what will remain unchanged is the need for good stories. As Spielberg says,
…show business, past, present, and future, depends on stories worth telling. “The thing I emphasize to everybody who comes to work at my company is, don’t play with the toys until you have something to say.”
As I prepare for a talk to be given at the National Quality Colloquium’s Innovation Track this September (Using Storytelling to Change Behavior), I have been pouring through reading on the topic of story, and how it can help change behavior. Having been part of the team that created the Tears to Transparency series, I am continuously reminded first-hand just how powerful patient stories are — to providers, as well as patients. Every time we share Lewis’ or Michael’s story–stories of harm at the hands of those entrusted to care for them–it is visibly apparent that medical students, residents, care providers and patient advocate audiences alike all feel the weight of the families’ loss. From the tears shed to the gratitude expressed for sharing these stories, a collective desire to do better for all patients permeates the room.
Most recently, I’ve been reading Lisa Cron’s (@LisaCron), Wired for Story, which has not only provided a number of pearls for my talk, but also a reminder of just how powerful the brain is in creating its own, very real, physiologic reality when engaged in reading or watching a story unfold. According to Cron’s research, stories–when told by writers who understand how to create characters we can relate to, and then place them in a world that provides just the right combination of conflict, resolution and reward–supply a pure dopamine rush to the reader, an almost addictive reward in itself.
We have written about the “how tos” and “whys” re:the use of story in healthcare a number of times (see Storytelling Tips from the Pros, Developing Storytelling Skills via TEDxEaling, Storytelling and the Reality of Medicine, Using Storytelling…to Develop Empathy, The Power of Storytelling in Medicine). As a fan and student of good stories, I am not surprised at the mounting research and resources teaching craft. Research studies, mainstream authors and marketing gurus all point to the innate need we all have to make sense of life via stories. Stay tuned for more advice from the pros.
In a recent Baltimore Sun piece, healthcare writer Marie McCarren wrote an op-ed providing “A prescription for fewer medical errors” — reflections from an emergency room visit with her husband that later turned into a stay on the intensive care unit. McCarren emphasized the need for healthcare providers to work at clearly communicating the ways in which family members of patients can help make care safer. She advises healthcare executives create meaningful patient handbooks that provide clear ways for patients to keep track of the complicated care system at what is most often one of the most stressful times in their life. She reminds us:
…Hospital executives, please listen. We are untrained and underslept, scared and stupider than we are in regular life. And we’re passive, because we want very much to believe that the doctors and nurses have the situation under control. Exploit our weaknesses. Give us a framework that will help us come up with useful questions and essentially order us to use it. I believe it would result in fewer mistakes and shorter hospital stays…
Almost in tandem, the Association for Healthcare Research & Quality (AHRQ) released the Guide to Patient and Family Engagement in Hospital Quality & Safety, outlining the value of inviting patients and families to engage in their care, and providing a “how to” for those still unsure. The guide covers the following topics:
- Information to Help Hospitals Get Started, which addresses: a) How to select, implement, and evaluate the Guide’s strategies. b) How patient and family engagement can benefit your hospital. c) How senior hospital leadership can promote patient and family engagement.
- Strategy 1: Working With Patients and Families as Advisors shows how hospitals can work with patients and family members as advisors at the organizational level.
- Strategy 2: Communicating to Improve Quality helps improve communication among patients, family members, clinicians, and hospital staff from the point of admission.
- Strategy 3: Nurse Bedside Shift Report supports the safe handoff of care between nurses by involving the patient and family in the change of shift report for nurses.
- Strategy 4: IDEAL Discharge Planning helps reduce preventable readmissions by engaging patients and family members in the transition from hospital to home.
*For more information about the Guide to Patient and Family Engagement in Hospital Quality and Safety, contact Margie Shofer at (301) 427-1259 or Marjorie.firstname.lastname@example.org.
Many health systems have begun to create patient education and admission materials that do in fact take some of these factors into account. If you, or a loved one, are about to become a patient, be sure to ask how you can best partner with your care team. If possible, request patient education materials well before your stay and provide feedback!
We know that engaged patients have the potential to not only help make care safer, but also improve outcomes. There are many intelligent people, with a fresh outlook and vested interest in these outcomes waiting on the sidelines. If you are a care provider, find a way to invite them in. And please, share your results with us.