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The Beryl Institute invites members and guests 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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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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Patient Experience Sits at the Center of Nursing

Posted By Susan E. Mazer, Friday, October 21, 2016
Updated: Friday, October 21, 2016

The patient experience is neither new nor revolutionary in healthcare. 

Florence Nightingale, 1820-1910

In fact, it goes all the way back to the work of Florence Nightingale who, in response to what she saw in the Crimean War, realized so much suffering could be relieved with the standardization of nursing practices. 

In her first and most famous monograph, Notes on Nursing, Nightingale claimed that suffering should not be presumed as part of the disease. Rather she wrote that “the symptoms or the sufferings generally considered to be inevitable and incident to the disease are very often not symptoms of the disease at all, but of something quite different -- of the want of fresh air, or of light, or of warmth, or of quiet, or of cleanliness, or of punctuality and care in the administration of diet, of each or of all of these.” 

From experience and observation, Nightingale knew how rudeness and inconsideration on the part of physicians and nurses could cause patient suffering. The task of the nurse was to protect the patient.

She warned that the vital energy needed by the patient to go through the reparative process should not be wasted nor distracted. Nightingale considered all disease to be reparative, coming on over many years and finally showing itself in a serious of symptoms observable and obvious to both patient and nurse.

There’s no doubt that nursing is where the patient experience initiative began and is what should guide it today.

Our healthcare system has thrown out the idea that nursing might be where we could best learn about the patient experience. And yet nurses have always been the strongest clinical advocates for patients. They understand the source of pain and suffering first because of their intimate relationship with patients.

In truth, the patient experience began to deteriorate when our healthcare system became consumed with medications and technologies. Patients then became the last people to be consulted about their condition and their needs. And, nurses became medicalized as the whole system sought to make all symptoms ripe for medical diagnosis and treatment.

However, Nightingale defined nursing as managing symptoms of suffering that were neither medical nor complex -- symptoms that could be solved by manipulating the environment or paying attention to the patient’s spoken needs. Or, symptoms that reveal other issues that would undermine that patient’s own capacity to heal.

My relationship and work with nurses, which began in 1980 when I designed educational programs on the use of music as therapy, has given me perspective on the considerations prioritized by Nightingale. Dallas Smith and I wrote and presented a docudrama (now a podcast), “Florence Nightingale: In her Own Words,” that brought to life her frustrations with the system that inspired her work. Nightingale’s writings were and are consistent with her absolute commitment to the humanity of the patient, to the uniqueness of each individual and the specificity of their situation.

Additional study of nursing theory has also helped me understand and respect the transpersonal relationship that nurses have with their patients and the way that nursing holds the tradition and expertise of the patient experience.

Dr. Jean Watson, Professor Emeritus and Nurse Theorist, moved Nightingale’s work further in identifying the unique role of nurses in her Theory of Human Caring (or Caring Science). Her Caritas principles, which are the guide to her Nursing Practice Model, call upon nurses to be authentic in their caring for their patients, to treat themselves and others with loving-kindness and equanimity, and allow for the depth of physical and spiritual wholeness in themselves and their patients.

Our relationship with Dr. Watson has taken Dallas and I to Qatar and Jordan, working with nurses in the Middle East who are committed to human caring across borders and political conflict. There, where some Palestinian nurses are not paid for nine months, and where Israeli nurses take in Syrian children and love them as they heal their physical and emotional wounds, human caring has taken on profound meaning.

The bottom line for nurses is to respect patients and their autonomy regardless of their acuity, capacity, or personality. Then allow patients to do as much as they can for themselves and to not get lost in a system where patients are often just medical records.

May Solveig Fagermoen, Ph.D., R.N., associate professor at the Institute of Nursing Science at the University of Oslo, Norway writes, “In nursing, respect must be, or rather is, grounded in the inherent worth of individuals as human beings regardless of their capacities and characteristics (a nonsecular position). … a person is respected not because of his individuality, we do respect him in his individuality. We take his interests, purposes, and degree of autonomy itself into account in the particular way we treat him.”

If the patient experience demands respect from physicians and nurses, identifies the patient’s right to expect and need for quiet and cleanliness, and if it presses to not have patients wait for any reason, then the practical map of how to do this lies in Nightingale’s work and ultimately in nurses.

And, if there is absolute respect for the suffering that you could not know, the anxiety you do not want to cause, and a sense of professional accountability for each patient, then the patient experience sits at the center of nursing, in each nurse, in every hospital.

 

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.

Tags:  accountability  healing  nurse  Nurse Leadership  relational healthcare  relationship 

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Life-Saving Patient Experience and The Beryl Institute Give New Meaning to Our Life

Posted By Janice Lee Juvrud , Tuesday, April 26, 2016

My patient experience began in 2003 when my husband, Michael, was diagnosed with auto immune hepatitis which eventually destroyed his liver. After nine years of becoming progressively sicker, he finally had a liver transplant. Complications occurred. He went into cardiac arrest. Forty-five minutes of heroic efforts by his medical team, along with a healthy dose of faith, brought him back to life although he remained in a coma for two weeks.

Days later, a second liver transplant was done which led to more complications: paralysis, kidney failure, lung failure, pneumonia, hospital acquired infection, ICU psychosis, heart problems, skin infections, CMV infection and more. Five months later Michael came home with an open wound the size of a football, and for the next year he was hospitalized two weeks of each month. Now four years after two transplants he is adjusting to a new normal for his life.

Although I was not the patient, I lived through my husband’s experience viscerally and as his sole caregiver. This experience, spanning nine years, left me feeling grateful to all the people who helped Michael survive. I now felt the only place I wanted to work is in healthcare. About two years ago, a doctor at the hospital mentioned The Beryl Institute to me. Knowing of the Beryl Institute opened my mind to a world of possibilities. Because I was honored to receive a scholarship to The Beryl Institute’s Patient Experience Conference this year, the possibilities started to become real. The conference was the perfect place for me!

Day after day, I attended sessions and met people who are also passionate about healthcare. Everyone I spoke with generously shared their experiences and connections. Several evenings a group of us had dinner together. This was a wonderful way to get to know people and build new relationships. All this gave me hope that I could make a living in healthcare doing work that had meaning for me. For years I have worked with organizations to develop work cultures that build strong relationships across the organization and with customers. I now see how I can apply my previous work to hospitals, particularly improving the patient experience. It was The Beryl Institute and Patient Experience Conference that helped me make this connection.

Just to give you an idea of the sessions offered, here are a few I attended:

  • Technology which is used to align patient’s and physician’s treatment goals and how together they reach highly personalized decisions;
  • Experience based co-design care process to ensure patients are heard and involved in their care;
  • Assessing current patient experience efforts and identifying critical steps for improvement
  • Empathy, can you teach this?

An especially moving experience for me and many others was Ronan Tynan, a Keynote Speaker, who is one of the Irish Tenors. After he spoke about his healthcare experiences, suddenly his rich, beautiful voice filled the auditorium as he sang Halleluiah. The song and his voice captured everyone’s heart. During Michael’s hospitalizations, we spent months listening to songs. The music reduced anxiety, blocked out the hospital noise and relaxed us enough to sleep. We felt the healing power of music.

The Institute is committed to improving the patient experience through collaboration and shared knowledge. Their commitment to this was obvious by the design of the conference that emphasized collaboration and sharing. In addition to fifty sessions, there were Breakfast Table Topics, a Patient Advocacy Community Gathering and a Body of Knowledge overview session to answer participant’s questions.

I left the conference feeling inspired with a broad overview of the patient experience and a better understanding of ways to improve it. I met many caring and knowledgeable people who may support me as I help hospitals improve their patient’s experience. The best way I can contribute to improving patient experience is to support hospitals develop their cultures.

Janice Lee Juvrud is a Company Culture Consultant, Certified Coach, member of Patient Family Advisory Council (PFAC) New York Presbyterian Hospital, Patient Advocacy Committee (PAC) of The Beryl Institute, currently taking a course in Caring Science, Mindful Practice by Dr. Jean Watson and grateful that Michael is alive!

Tags:  body of knowledge  healing  learning  patient and family  Patient Experience Conference 

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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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IHI Forum – Mandate for Change

Posted By Barbara Lewis, MBA, Tuesday, January 14, 2014
Updated: Sunday, January 12, 2014

I recently had the opportunity to attend the Institute for Healthcare Improvement’s 25th Annual National Forum on Quality Improvement in Health Care held in Orlando. As a family member who altered my career last year after my sister’s death to focus on improving the patient experience, the conference was a dream come true for me. Cited by many as one of the best conferences in healthcare, the IHI Forum was an incredible experience with inspirational and thought provoking keynotes, educational sessions, informative and interactive exhibits, a bookstore packed with knowledge and 6,000 people from around the world – all interested in improving healthcare. I met wonderful people, whom I hope will be my friends for life.

The Beryl Institute generously supported a booth – The Patient Is In. Prominently situated in the Forum lobby, the kiosk offered attendees the opportunity to talk with patients, family members and patient advisors about how they can better work together.

The conference was bookended by two inspiring speakers – Maureen Bisognano, the President of IHI and Don Berwick, the founder of IHI 25 years ago.

Maureen kicked off the Forum with a thought provoking message to "flip healthcare.” Just as other industries are flipping, such as education where lessons are learned at home and "homework” is done in classrooms under the teachers’ watchful eyes, Maureen’s request was for the audience to discover a new model of healthcare.

Her message was complemented by Don Berwick’s remarkable closing keynote. Using the analogy of John Harrison in the 1700s, who researched for 47 years and invented four apparatuses that map longitude and time, healthcare initiatives can be just as revolutionary…and take just as long.

His inspirational message invoked Maureen’s flip it theme by imagining a world where we don’t just focus on health care but rather health creation. He cited four pillars of human flourishing: psychological resilience, social support and cohesion, exercise movement and sleep and health exposure to substances in diet and environment. He went on to discuss the characteristics of Dan Buettner’s Blue Zone communities: move naturally, know your purpose – have a reason for waking up, kick back – shed stress, eat less, eat less meat, drink in moderation, have faith, power of love – family first and stay social. The effects of these activities have proven to have enormous impact on health.

Don reinforced his new health vision when he described a car trip to visit his two-year old grandson, Caleb. Don started the drive upset with tense shoulders and neck, and stomach pains. But as he drove closer to the little boy who would jump in his arms, his pains, his aches and his tensions melted. Don created good health through Caleb. He concluded his powerful presentation by asking the rapt audiences: Who or what is your Caleb?

The recent upheaval in healthcare presents a rare opportunity for transforming an industry that is crying for change in so many areas. And if you think that you can’t do much yourself, remember Lindsay Beck.

In her keynote interview with NBC medical editor Nancy Snyderman, Lindsay told her sometimes funny and poignant story. Through her treatment for a cancerous tongue, she ultimately forced all U.S. doctors to inform patients that chemotherapy could sterilize them and convinced every insurance company to pay for freezing a woman’s eggs or a man’s sperm. As Nancy pointed out, Lindsay changed western medicine.

What can you do? Don had six suggestions:

  1. Reconsider you own concept of health.
  2. Reconsider the form and function of your piece of the healthcare system.
  3. Take account of healing tools you and your patients have that lie outside the boundaries of the healthcare system.
  4. Bring systems thinking to the pursuit of well-being.
  5. Re-establish your faith in and use of connectedness and interpersonal relationships.
  6. Remember, embrace and celebrate that kindness is inseparable from healing and good health.

Let’s get started...we’ve got a lot to do.

Barbara Lewis, MBA is the founder of Joan’s Family Bill of Rights, which focuses on writing, speaking and researching to improve the patient experience. She is a member of The Beryl Institute’s Global Patient and Family Advisory Council and a recipient of a 2013 Beryl Institute grant.
BarbaraLewis@JoansFamilyBillofRights.com


 

Tags:  change  healing  healthcare  patient centered care  patient experience 

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