A Must-Have in Your Care Continuum: Long-Term Nursing at Home

Conventional experiences of the US health care continuum go something like this: regular preventative doctor visits; emergency department for acute events; specialists for complex diagnosis and treatment; hospital for acute care, testing and surgical procedures; rehab and home health for recovery; follow-up doctor visits for maintenance; and if needed at an advanced age, home or facility care.

But what about long-term, high-acuity care for a life-changing injury or diagnosis? There are not as many accessible options.

For the last 14 years, I have made it my life’s work to safely and compassionately transition individuals with chronic, complex care needs out of a facility and into the home and community life of their choice. 

For most, this means adjusting to a drastically new normal, and I am convinced that their health outcomes, well-being, and quality of life become the best they can be with the individual care and attention they can receive in the home setting.

The Statistical Challenge

According to the American Association for the Surgery of Trauma, there are over 3 million non-fatal traumatic injuries in the US per year. The National Spinal Cord Injury Statistical Center estimates that over 300,000 Americans are currently living with a spinal cord injury (SCI). An estimated 5.3 million Americans are living with traumatic brain injury (TBI)-related disability according to the International Brain Injury Association.

Often, patients like these are sent home from the hospital without thorough education, necessary resources, or a plan if something goes wrong. Patient-centered home nursing care fills these gaps to prevent unnecessary readmissions and promote the best long-term outcomes. 

I have had the honor of working with dozens of families who have heroically reclaimed their best quality of life possible following a serious injury or diagnosis. The Khans are one such family.

A Case Study: Dr. Khan

Tragically struck by another driver on his way to work in Tampa in 2016, Dr. Nadim Khan sustained life-changing injuries that included a severe traumatic brain injury, diffuse axonal injury, multiple broken bones, and a subarachnoid hemorrhage (brain bleed). 

Comatose and on a ventilator, Dr. Khan’s initial prognosis was grim. His wife, Dr. Roohi Khan, was told that her husband was unlikely to ever get better, but she never lost faith and never gave up on getting him the care services he needed.

Nadim awoke with minimal consciousness. There was no disorder of consciousness program in their home state of Florida, and Nadim wasn’t well enough to receive therapy in a rehab center. He was transferred from Tampa to the Shepherd Center in Atlanta, where Roohi and their four children relocated to stay by his side. 

Nadim began to make strides every day. He started breathing independently and had his tracheostomy tube removed. He started eating and speaking, took his first steps, and started hugging his loved ones again. His kind, loving personality was shining brighter. 

Yet, the road to recovery would have ups and downs. Not long after discharge, while in outpatient rehab, Nadim developed a seizure disorder and his progress began to slide backward. 

Roohi advocated for her husband to be admitted to TIRR Memorial Hermann, a leading medical rehabilitation hospital in Texas. For the better part of a year, Roohi flew back and forth between Texas and Florida, splitting her time between her husband, her children and extended family back home, and her medical practice. 

After another phase of outpatient rehab, the Khans engaged our BAYADAbility™ Rehab Solutions team to help them return home to Florida in 2018. Finally, their nuclear family of six and their large extended family of grandparents, aunts, uncles and cousins were reunited for good.

Ever since, for six years and counting, specialized 24/7 nursing services have allowed the Khan family to stay together at home, where they want to be, and have yielded zero incidents of injury-related disease or hospitalization.  

An Ideal Solution: Specialized Nursing at Home  

Led by a team of certified rehabilitation registered nurses (CRRNs) with diagnosis-specific training and expertise, our BAYADAbility™ program delivers high-quality, proactive and preventative home health care that reduces complications and readmissions, improves health outcomes, and controls costs.

The goal for Dr. Khan was to achieve his optimal level of functioning at home and to find a way to reintegrate him into his community. His team of family and professional caregivers, fondly known as Team Khan, includes around-the-clock nurses along with physical, speech, art, and occupational therapists. 

We hired and trained the Khans’ trusted nurse, Cathy Riley, to become a BAYADA Nurse. She helped provide consistency of care through the move and continues to work as Nadim’s primary nurse today. 

In this model, the home care rehabilitation nurse functions as a clinical resource, a care coordinator, an advocate, and a contributing member of the interdisciplinary care team. The nursing team communicates with client, family, and physicians to develop and manage an individualized care plan, monitor for changes in condition, and help to safely implement the client’s self-management skills in home and community settings. 

Dr. Khan’s home care team has been trained on his therapeutic exercise regimen so they can supervise his progress and help him regain independence with his activities of daily living between therapy sessions. Every day is different: some days he is energetic and talkative, while on other days, his caregivers give him the rest he needs. 

The Khans’ home was accessibly designed with ceiling lifts that help with transfers. Nadim can use a wheelchair stander, and together, the Khans have resumed hosting and attending large family parties as they did prior to his accident. Even on a quiet day, you can see Nadim’s face light up with pride and joy for his loved ones.

From her unique perspective as physician, wife and mother, Dr. Roohi Khan observed, “There is nothing better than the comfort of home. Activity-based therapy at home is what every patient should have every day. Our family is very blessed to able to provide that, but not everyone is so lucky.”

“It’s not fair to tell any family that this is the best it will get,” she continued. “Without access to long-term nursing at home, another young parent in their forties would have found themselves in a nursing home experiencing bedsores, loss of bone density and muscle tone, contractures and pain. By not adequately funding specialized home care, as a society, we’re doing harm and not being proactive.”

Implications

To achieve the Institute for Healthcare Improvement’s Triple Aim of improving population health, improving patient experience, and reducing per capita cost, specialized rehabilitative home nursing care belongs in every health system’s mix of services. For individuals with diagnoses such as SCI or TBI, the prevention of even one unnecessary hospital stay can save tens if not hundreds of thousands in health care spending.

Care transitions are fragile and require transparent and timely communication, planning, and education to meaningfully achieve the patient’s wishes and goals. Home nursing teams are built to provide this level of individual attention, creating a truly patient-centered experience that helps to prevent errors, promote communication and compliance, and continuously set realistic expectations about next steps.