DAISY Award—Tower 4 ENT/IM/Adolescent Team and Supporting Colleagues

Tower 4 ENT/IM/Adolescent Team and Supporting Colleagues

In the summer of 2024, Tower 4 was given the opportunity to care for one of the most medically perplexing cases that brought us all more questions than answers on a daily basis. This unit admitted a patient in his mid 50’s with new onset blindness, deafness, and cognitive impairment. The patient was absolutely terrified of what was happening to him, and the family was at a loss as to how to care for him and where to seek help to diagnose such a rare case.

Tower 4 staff immediately started working to develop a multidisciplinary care team that could help him with his physical and emotional needs. Upon researching new onset deafness and blindness in adulthood, we found that it is rare and there are very few cases in the United States. Most often, deafness and blindness are acquired in childhood or infants are born already deaf and blind. Very early on it became evident that our team had to be collaborative and creative when working with this patient to meet his needs and find answers.

Communication with someone who was newly blind, deaf, and cognitively impaired became a huge concern for the staff: “If he cannot see or hear, how do we communicate with him? How do I tell him what we are going to do? How do I figure out what he needs?” We had the benefit of having an extremely compassionate light duty nurse work with this patient for several weeks at the beginning of his hospitalization. While her light duty status did not allow her to work on her home unit, she quickly became part of the Tower 4 team. She worked diligently to develop a communication system for the patient utilizing touch to communicate yes or no. She researched the Helen Keller Intl on ways to communicate with deaf and blind individuals. She also searched YouTube and researched the internet for any systems that we could put in place to consistently start developing a communication plan with the patient. Her work to develop a communication plan was then continued and added upon by our nursing staff and shared amongst all the multidisciplinary team members.

Nursing staff worked with the family to bring in large magnetic letters to teach him how to read tactilely through his fingers. We utilized Primary Nursing to build a core group of nurses to care for him. This promoted consistency of care, trust, and patient advocacy. These providers were learning right along with the patient on ways to communicate with him. The remainder of the Tower 4 staff also learned about this patient so that anyone could answer his calls and confidently and safely take him to the bathroom, help him eat, walk him in the hall, and help him feel safe. Occupational Therapy and Physical Therapy worked with him to help provide some autonomy and improve mobilization. They utilized the touch communication system that nursing had established but went further to start teaching him how to work with a white cane to navigate his surroundings. We discovered that a white cane is not considered durable medical equipment, and they are not available through our distribution services. One of our occupational therapy assistants went to the Society for the Blind to gather more information on how best to work with people who are visually impaired. While there, he picked up a white cane in hopes of improving the patient’s independence. As soon as the white cane arrived, the staff began the white cane training and how to navigate his physical space.

While the hospital was still looking for a safe discharge placement option, the family felt they would be able to care for him at home. His mood had stabilized, our communication system with him was established, and the family had come to terms with the fact that his sight and hearing was not going to come back anytime soon. They were ready to take him home and work to get him the outpatient follow-up that was necessary to shed some light on a diagnosis. Unfortunately, the patient’s family brought him back to the hospital four days later. He had become terrified at home, emotionally labile, and overwhelming to care for by his elderly mother. The mother called our unit to tell us she had to bring him back. Our assistant nurse manager immediately went to work to expedite admission back to our unit even though he was considered an ‘off service’ patient. We knew the intricacies of his case, we had been his advocates, and his family trusted our staff. Upon admission, the mother stated how relieved she was that he could come back to our unit. We were grateful that she felt her son was safe with us.

Upon readmission, we immediately went to work caring for the patient and supporting his family, just like they had never left. Since the patient’s case was complex and rare, the staff consistently advocated to find a diagnosis for this patient. The diagnosis could potentially help this patient secure financial assistance and placement in a facility dedicated to patients with similar impairments. Outpatient follow-up that would have been postponed due to the patient coming back into the hospital, continued as previously planned. This meant utilizing other service lines, resources, and testing not typically used in an inpatient setting, such as Genomic Medicine and Neuro Immunology. Appointments to the outpatient Ophthalmology and Audiology clinic settings were kept in order to evaluate causes for this patient’s sensory losses. It is infrequent that inpatients are transported to these clinics, but when they are, it is typically a very simple transport by ambulance with paramedics. Our nursing staff were concerned that this would be a challenging experience for him, the ambulance crew, and the clinic staff. Our staff had been working with the patient for several months and were effective in communicating and guiding him. We could not expect strangers to know how to communicate with him. Therefore, a Tower 4 nurse always escorted the patient on these appointments to help provide familiarity and communication.

The nurse manager early on gathered social workers, discharge planners, physical therapists, occupational therapists, speech therapists, the family, and the medical team to start meeting on a weekly basis. This multidisciplinary group focused on the current medical plan of care and the long-term placement possibilities for the patient, as it was not safe for him to discharge home to his elderly mother. Unfortunately, discharge locations such a skilled nursing facilities or board and cares are not equipped, nor do they have experience caring for individuals who are newly deaf and blind. We found out this was going to be a huge hurdle to find a place that has the experience and resources to care for a patient such as ours. Our social workers established relationships with staff at the Helen Keller Intl on the East Coast. While this was not a placement option, Helen Keller Intl helped advise us on things to consider when looking for discharge locations for this patient. Additionally, they gave us resources on how to develop communication that was standardized in the deaf/blind community in anticipation of the patient at some point discharging. This relationship afforded us the opportunity to meet with a Helen Keller associate who was on the west coast for a conference. This associate came to the hospital and met with the patient, family, and staff. She began to teach palm sign language to the staff, patient, and family which he would eventually be using when he reintegrates in the community. We all want to set him up with the best possible system of communication.

Tower 4 consistently steps up to meet the demands of the hospital, patients, and their families. They role model multidisciplinary collaboration and teamwork to exemplify the UC Davis Health values of extraordinary love, compassion, courage, and integrity. The search for answers on why this patient became deaf and blind are ongoing. Finding a safe disposition after discharge has yet to be secured. But with these two unknowns, there is one very powerful known: Tower 4 staff will continue to advocate and care for this patient as best as we know how, with our hearts.