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.