Patient Stories

Medical Issues: Pre-operative cervical spine traction. Transoral surgical procedure. Intubation post-operatively. Communication vulnerability.
Background: The family traveled from east coast to large mid-west hospital for surgery to repair her spinal defect. Early in her admission, she was not a "happy camper", expressing anger in ways not always considered "appropriate". Some staff found her verbal behavior rather challenging.

Story about her hospitalization and the impact of communication enhancement strategies
SS is a 10 year old girl with a congenital cervical spine defect. She also has a history of cardiac problems which added risks to the transoral surgical procedure required to repair her spinal defect. When admitted for her pre-operative cervical spine traction she had to lie on her back with a halo and several pounds of traction, which she found difficult. In fact, she developed some cardiac arrhythmias and required ventilator support before her operation. She was "unrestrained in her displeasure and anger." After several days her condition stabilized and she had the surgery. Following surgery she remained intubated for about a week.

Her communication needs were anticipated so she was seen preoperatively to explain that she would be intubated during and after surgery and she was offered the use of an AAC device so she could communicate. Staff worked with her so she became familiar with the device (Dynavox 3100) and helped to personalize core messages of the Iowa Template (see Figure 1) so she could make specific requests. She also requested having an onscreen keyboard so she could create novel phrases as well as environmental control (ECU) options so she could summon the nurse, control her TV and a fan in her room.

When she was admitted, the Assistive Technology Service provided her with the device and an opportunity to practice using it. When she needed to be intubated and had been stabilized, she used the device to express the pre-set messages on her templates, as well as the  onscreen keyboard. Reportedly, she produced language "not often heard in the pediatric intensive care unit" even though she could not use her natural voice. While staff were getting her stabilized and ready for surgery, she was a "demanding patient". A doctor suggested that we put a "four letter filter" on the device. However, staff decided not to interfere with her choice of language since she would most certainly have used the same words if she had not been intubated.

Post surgery, she continued to use the device for communication and for ECU functions. She used it to communicate wants/needs and to engage nurses and medical staff in conversations about a range of topics. As she regained her natural voice, she continued to use the device for ECU, as it gave her more control.

The nurses said that because SS could communicate her feelings, it was easier for them to be responsive. If she'd been restricted to pre-stored messages, they felt she might have rejected the device. So although her language was "salty" in the beginning and she started out as a hellion, she turned into a favorite of the nursing staff after the surgery. All agree that without communication tools and pre-operative training, her hospitalization would have been even more difficult. SS said the device "allowed me to be me when I couldn't speak" and that she liked the ECU best so she could get to her favorite TV channels quickly by herself.

Relevant issues: The Joint Commission Standard on Effective Communication, Cultural Competence, and Patient- and Family-Centered Care.

The new Joint Commission standards helps remove barriers to successful patient-provider communication by mandating the following:
The medical record contains information that reflects the patient's care, treatment, and services (Standard RC.02.01.01). Anticipating the need for prolonged intubation following surgery, a hospital can prepare in advance to address communication needs. In SS's case, this also made it easier when she required ventilation prior to surgery to maintain communication access.
The hospital effectively communicates with patients when providing care, treatment, and services (Standard PC.02.01.21). The hospital addressed SSs communication needs throughout her "course of care" and the speech-language pathology department provided treatment and monitored her communication needs from pre-admission through discharge. The hospital provided ways to ensure two-way communication between the patient and her providers in a manner that meets the patients needs, complementing R1.01.01.01, EP5 (patient right to and need for effective communication); R1.01.01.03 EP3 (meeting needs of patients with speech (etc.) impairments).
The hospital respects, protects, and promotes patient rights (Standard RI.01.01.01). This includes the right to and need for effective communication (R1.01.01.03,EP1) Although not a typical concern, SS's use of language was not widely appreciated. Even so, the hospital decided to condone it rather than remove the device, which in essence would have been the equivalent of taping her mouth shut if she had been able to produce speech. As soon as her condition became more comfortable, she stopped swearing.