After 3 weeks of intensive care for a severe traumatic brain injury (TBI), my minimally conscious husband was transferred via ambulance to a long-term acute care/rehabilitation hospital campus in an adjoining state. His tracheostomy, gastric, urinary, and intravenous tubes were helping him breathe, hydrate, get nutrients, and urinate. As I watched the ambulance pull away from the Level I trauma hospital, my numb brain could not wrap itself around what was happening. My husband had fallen off our garage roof onto concrete and suffered significant intraparenchymal, subdural, subarachnoid, and epidural brain hematomas along with a severe retrobulbar hematoma, nine broken ribs, a punctured lung, and a broken clavicle. God had spared his life, but what was left of him or what recovery would he make? What were our lives going to be?
The next day I made the 4-hour drive from our home to the rehabilitation hospital where we would spend the next 15 weeks. Besides being incredibly sad, I was angry. When I arrived at Madonna Rehabilitation Hospital, every fiber in my being screamed we should not be here; this place is for disabled people! My husband and I were healthcare providers—I a nurse and he an internal medicine physician—not patients. A young man sat in a wheelchair by the entrance and stared blankly at me as I entered the front lobby. Water trickled down a tile wall like a bubbling brook—a sound I would seek out in the coming days when I needed a mental reprieve. I walked past the young man, thinking how surreal everything was. Why couldn't I wake up from this nightmare and everything be back to normal?
As I made my way to the long-term acute care (LTAC) unit where my husband was receiving care, a large plaque stopped me in my tracks. It read:
For I was hungry and you gave me something to eat. I was thirsty and you gave me something to drink. I was a stranger and you invited me in. I needed clothes and you clothed me. I was sick and you looked after me. I was in prison and you came to visit me. Whatever you did for one of the least of these brothers of mine, you did for me. (Matthew 25:35-36, 40, NIV)
Underneath the verse was this quote from the Rule of Saint Benedict: “Care of the sick must rank above and before all else, so that they may truly be served as Christ” (The Order of St. Benedict, Inc. [The Order], 1981, 36:1). I wondered, Will the people in this place care for my husband as for Christ?Do they believe what this plaque espouses?
My eyes were then drawn to stunning pictures of patients in different types of therapy and varied stages of recovery that lined a long hallway. The patients and attending staff were smiling, not staged smiles for the camera, but showing genuine delight at what was being accomplished. The faces looking back at me were determined and focused. I was struck by more quotes on the walls:
We all have ability. The difference is how we use it. – Stevie Wonder
The only limit to our realization of tomorrow will be our doubts of today. – Franklin Delano Roosevelt
It is not a mountain that challenges us, it is ourselves. – Sir Edmund Hillary
Faint thoughts ran through my mind: What is this place? What will happen here?
When I found my husband's room, a nurse warmly greeted me. She welcomed me to Madonna and began to explain the environment, the daily schedule, what to expect, and where I could get coffee and snacks on the nursing unit. I told her I was a nurse and we started talking shop using nursing language. I was impressed by her competence and knowledge of brain injury and recovery. Most of all, I sensed the element of greatest importance to me—her empathy and compassion. I knew that if staff members truly cared about the patients in their charge, my loved one would be safe. I wondered, Is she one of the good nurses? Will I encounter more staff like her?
The next day personnel from occupational, physical, and speech therapies, social workers and case managers, assessed my husband and interviewed me. Everyone asked, what are your goals for therapy? I had not stopped to think about anything but survival for weeks. For days after he fell, we didn't know if my husband would live, then we didn't know if he would wake up. He had started responding to stimuli only 3 days earlier. I knew that unless God willed differently, he would never again work as a physician. I decided I would set the bar low and only ask that my husband be able to perform self-care at home. I could tell from the responses of the staff that it might not be realistic to expect him to feed, toilet, bathe, clothe himself, and walk without assistance. But that became my goal for rehabilitation.
WHAT IS REHABILITATION?
Rehabilitation is care that helps a person get back, keep, or improve his or her physical, mental, or cognitive abilities needed for daily life (United States National Library of Medicine [NLM], 2020). Rehabilitation (rehab) focuses on restoring skills that have been lost as well as regaining and building maximum self-sufficiency. Nursing, medicine, physical, occupational, speech-language, recreational, massage, music, art, vocational, vision, and cognitive therapies are used in rehab in a coordinated, interprofessional fashion. The complete rehab team designs comprehensive, patient-centered treatment plans to help maximize overall functioning, potential, and quality of life throughout the lifespan. Different assistive devices from physical to cognitive to psychosocial are used to aid therapy and achieve patient goals.
Elements of rehab often begin in a short-term acute care or critical access hospital following acute injury or illness; however, LTAC and rehab hospitals specialize in rehabilitation (NLM, 2020). Healthcare data and analytics company Definitive Healthcare (2020) reports there were 431 LTAC and 331 rehabilitation hospitals in the United States in 2019. The Long-Term Care & Rehabilitation Section of the American Hospital Association (AHA, 2020) indicates rehab hospitals provide comprehensive physical medicine, as well as rehabilitation programs and services that optimize patient health, function, and quality of life in a coordinated and integrated manner.
Physical medicine and rehabilitation (PM&R), known as physiatry, focuses on enhancing quality of life for individuals of all ages with injuries, illnesses, and disabling impairments, as well as preventing and treating injury in athletes. Physiatrists are physicians who diagnose and treat multiple physical and cognitive conditions associated with disability, working to keep the big picture in focus as they collaborate with primary care providers, neurologists, orthopedists, neurosurgeons, neuropsychologists, and nurses and various therapists to improve patients' lives. Many subspecialize in Brain Injury Medicine, Hospice and Palliative Medicine, Neuromuscular Medicine, Pain Medicine, Pediatric Rehabilitation Medicine, Spinal Cord Injury Medicine, and/or Sports Medicine (American Academy of Physical Medicine and Rehabilitation, 2019).
Rehabilitation nurses work as direct caregivers, collaborators, educators, care coordinators, advocates, and change agents. The Association of Rehabilitation Nurses (n.d.) explains that rehab nursing “is a philosophy of care, not a work setting or a phase of treatment” (para 3). Nurses play multiple roles in the rehabilitation continuum, from the admissions liaison nurse to staff nurses, nurse managers, clinical nurse specialists, nurse researchers, discharge planners, case managers, and home care nurses. Together, they plan, oversee, and implement the entire rehab process with the team of physicians and therapists, including ensuring safe care transitions between settings and from rehab to home.
HALLMARKS OF REHABILITATION
I quickly discovered that the number one hallmark of rehabilitation is focused, coordinated care. Every day, multiple therapists came and engaged my husband in physical, emotional, and cognitive challenges. Nursing staff were razor focused on restoration as they bathed, interacted, and cared for him. Every detail of life had a goal at both the LTAC and later the acute rehabilitation hospital. Everyone pushed my husband to raise his drooping head, put his foot down and bear weight, to stand, to stretch out his arms and hands and reach, to remember something, to form and speak words, to write a coherent sentence.
The common thread in all of the care was hopefulness. Everything about rehabilitation points toward hope. This is not to say anyone promised specific things about recovery, but each person with whom we came into contact oozed anticipation. Everyone understood what we were trying to achieve and focused on change, improvement, and the future. It seemed as though they lived out Jesus's words in Matthew 17:20 (NIV), also printed on a hospital wall: If you have faith as small as a mustard seed, you can say to this mountain, Move from here to there, and it will move. Nothing will be impossible to you. There was an eagerness to see what could be achieved each day, what mountain could be moved.
The amount and intensity of therapy is another hallmark of rehabilitative care. In order to be admitted to the LTAC hospital, my husband had to be able to do a minimum of 3 hours of therapy each day. A month later when he was transferred to the rehab hospital in the same building, we had to complete 6 or more hours of therapy daily. I had to agree to push him to complete all therapy. We worked with occupational, physical, speech and language, vision, and recreational therapists—some twice each day. He went to a 5,000-square-foot therapy gymnasium twice daily to work on balance, coordination, and strength. We met with nurse case managers, social workers, and neuropsychologists every week and any time I had questions. We attended group classes on resources for the disabled and life after brain injury.
Rehabilitation, I learned, is all about the family as well as the patient. Caregivers are more than an integral part of therapy and care; I discovered that I too was being rehabilitated. I needed to acquire skills that would help my husband identify and recover information, express words, figure out simple directions, and in essence, interpret the world around him. I was absorbing how to be with him in a new way. The classes, therapy, services, and counseling weren't just for patients, they were for the circle of family and friends surrounding the patient. A key component of rehab was supporting me as I struggled to make sense of what had happened to us. I was learning how to live with my life partner whose brain was forever changed.
One hallmark of rehab that surprised me was individualization of care. Hospital personnel care for many patients with severe TBI, but I sensed that every aspect of care was being considered, processed, and watched over—that our care was personalized. For example, the speech and language therapist obtained paper copies of progress notes and medical forms, things familiar to my husband as a physician, for him to fill out and sign in his semicoherent state. This therapist also obtained medical journals for him to read, even though his concentration was limited. Every day a dietitian worked tediously to assess what he wanted to eat. I watched her labor to help him understand and communicate his food choices when I thought she should give up and just bring him the standard menu.
About two weeks into LTAC rehab, my husband became quite agitated as he tried, day and night, to get out of bed and away from something terrible. This went on for weeks as he struggled to make sense of his surroundings. Nursing and therapy personnel repeatedly asked me what calmed him, what were typical words he used, what did I suggest to help quiet his terror? A night-shift nurse brought lavender aroma therapy and soothing music. Nurse aides gently talked to my husband day and night to turn his attention to other things. They patiently worked to keep him safe even as I grew frustrated and weary. I noticed nursing staff doing the same things for other patients on the unit. I had never witnessed such intense efforts to assist patients and keep them safe. Because we had the same caregivers for weeks, the nurses, therapists, and physiatrist became our friends.
A final hallmark of care at Madonna was spiritual care. A spiritual assessment was completed when we were admitted to LTAC, and another when we transferred to acute inpatient rehab. These assessments were not the one question, “Do you belong to a faith tradition / attend a church?” An assessment was completed about our beliefs and what I thought would help us in rehab. Nurses and therapists talked with me about our beliefs, asked about spiritual needs, and offered suggestions for spiritual sustenance. Prayer and daily blessings were announced over the public address system. Daily mass and weekly Protestant chapel services were available. A priest came by every day to offer a blessing and prayer—something I came to cherish, and the Protestant chaplain interacted with us multiple times each week. These spiritual care specialists prayed with me, listened to my fears, and helped me begin to formulate hard questions about why this terrible accident occurred. Almost all of the Madonna staff offered true presence in this ordeal. Gratefully, many tried to help me experience God.
One afternoon in rehab when the sun was shining brightly, I was struck by the light reflecting off a long 20-foot mural located in one of the hospital's main hallways. Made in the style of an Orthodox religious icon, the mural depicts the young Madonna. The painting is titled Hope. Charity. Faith. Designed by artist Jody West, the mural was donated by the Cara and Daniel Whitney family.
A beautiful, multilayered white, gold, and blue veil flows from Mary's head over her outstretched arms to flowering bushes at the sides of the mural. Mary's soft gentle gaze is turned left and downward as though she is watching over something precious and fragile. The sun rays and reflection led me to stop and study the mural. A closer look revealed the stunning image is made up of thousands of tiny pictures of people—former patients at the hospital. Together, the people make up a beautiful tapestry that depicts God's watchful tender loving care. For me, the mural came to represent our rehabilitation experience of thousands of interventions, some small and some huge, by dozens of rehab staff who believe in what they are doing and in God's miraculous ability to heal broken people.
Today, a year and a half since my husband's accident, he and I continue to figure out life after severe TBI. He made an excellent physical recovery, far beyond being able to perform basic self-care at home. He still struggles with expressive aphasia, memory, and logic. We daily work on physical strength and conditioning at the local YMCA, brain exercises (which he hates), emotional stability, and spiritual growth. He goes to the local Union Rescue Mission 5 days a week to help as he can. I continue to ponder the sovereignty of God and strive for wisdom and hope in this painful journey.
I will forever marvel and be grateful for the field of rehabilitation and the people who worked diligently to help restore our lives. Rehabilitation, I discovered, is a sacred calling. Combined with the best in innovation and technology, rehab helps broken people restore hope and get their lives back.
Madonna Rehabilitation Hospitals—A History of Hope and Healing
Let them prefer nothing whatever to Christ, and may he bring us all to everlasting life. Rule of St. Benedict (The Order, 1981, 72:11-12)
Since 1958, Madonna Rehabilitation Hospitals has helped children and adults rebuild and resume meaningful lives after disabling illness or injury. Founded by the Benedictine Sisters of Yankton, South Dakota, Madonna was established as a Catholic hospital on a 24-acre campus in Lincoln, Nebraska. The name Madonna was chosen in honor of the Blessed Mother of Jesus as it was the Marian Year of the Catholic Church. The Sisters' commitment to hospitality created a welcoming environment focusing on those in need. Madonna's culture is based on the spirit of the Rule of Saint Benedict (RB), written by Benedict of Nursia in the 6th century: “Care of the sick must rank above and before all else, so that they may truly be served as Christ” (The Order, 1981, 36:1). The Benedictine Sisters' enterprising spirit is felt throughout the Madonna campus and reflected in the organization's core values of collaboration, hospitality, respect, innovation, stewardship, and teaching (Madonna Rehabilitation Hospitals [Madonna], 2020a).
Madonna leads the United States in specialized rehabilitation programs for brain injury, spinal cord injury, stroke and neurological diseases, and pulmonary conditions for both children and adults. One of the largest, freestanding rehabilitation hospital systems in the country, Madonna remains the only rehabilitation system of care to have secured pediatric rehabilitation units and all levels of rehabilitative care on two campuses. Patients in the Lincoln Campus rehabilitation hospital rank in the top 2% nationally in terms of complexity, while discharging back to community settings at a higher rate of functioning according to industry benchmarks (American Medical Rehabilitation Providers Association, 2019). Madonna Rehabilitation Hospitals has more separate Commission on the Accreditation of Rehabilitation Facilities (CARF) accreditations in the area of medical rehabilitation than any other hospital in the nation with 31 accreditations. Madonna's comprehensive medical staff includes physiatrists, pediatricians, pulmonologists, and internal medicine specialists who work with each patient's clinical team to develop personalized rehabilitation care plans.
As a Catholic specialty hospital system, Madonna's clinical expertise, innovative technologies, and research empower staff to help people facing the most complex conditions reach their full potential. The patient-centered approach to care embodies more than treatment and technology. It's a holistic approach embracing mind, body, and spirit. Staff members learn each individual's personal history, unique interests, and spiritual needs. People often comment that upon entering Madonna's doors, they are engulfed in a deep tradition of hospitality and caring. It's the Madonna difference.
The Madonna Institute for Rehabilitation Science and Engineering, with locations on Lincoln and Omaha campuses, collaborates with university researchers, clinicians, scientists, and industry business leaders to develop new technologies. Madonna's Institute is a living laboratory, meaning clinicians and patients guide the direction of project development. The Institute team develops technical solutions to improve rehabilitation outcomes to help patients fully participate in life. The ICARE, a body-weight supported elliptical created by the Institute, helps individuals with physical disabilities and chronic conditions improve their walking ability and cardiovascular fitness. The ICARE has received two U.S. patents and an international award for its innovative technology (Madonna, 2020b).
Rehabilitation takes place throughout the Lincoln campus, including in the 5,000-square-foot therapy gym, a warm-water therapeutic pool, an onsite classroom, and in Independence Square—a simulated community with a grocery store, kitchen, and shopping where skills can be practiced in everyday life settings. Convenient on-campus housing allows family members to stay close to their loved one and actively participate in the rehabilitation process.
In 2016, Madonna doubled its footprint with an Omaha campus. The 110-bed campus, containing two freestanding hospitals, brings world-class, individualized rehabilitative care to Omaha. Madonna is partnering with the University of Nebraska Medical Center with a new physical medicine and rehabilitation (PM&R) residency program. The program is the first of its kind in Nebraska and a five-state region, and Madonna serves as the primary training site.
In the past 5 years, Madonna has served patients from 45 states and every county in Nebraska. In December 2019, Madonna announced a $57 million, 3-year project expansion to the Lincoln Campus. Plans include constructing to replace half of the existing rooms, integrate leading-edge technologies, improve patient and employee experience, and affirm Madonna's position as a critical part of the healthcare continuum.
From the humble beginning with the Benedictine Sisters to the 21st century evolution of Madonna, the generous spirit of the Sisters and of Christ is lived out.—Tami Rudder, BS, Madonna Rehabilitation Hospitals, Lincoln, NE
Association of Rehabilitation Nurses—https://rehabnurse.org
American Academy of Physical Medicine and Rehabilitation—https://www.aapmr.org
American Medical Rehabilitation Providers Association—https://amrpa.org/