Important research is underway to bring healthcare into the modern era with electronic health records and integrating systems to work seamlessly together. But what of advancements outside of tech – our evolving understanding of the interpersonal elements of medical care and the difference they can make to patient outcomes?

 

“Respect is a foundational ethical value with subtle nuances that can easily be overlooked in the fast-paced health care environment,” writes Cynda Rushton, a member of the team at the Johns Hopkins Berman Institute of Bioethics tackling the complex issues of respect and dignity in the intensive care unit (ICU).

 

 

The study is the bioethics component of the larger “Project Emerge” at Johns Hopkins, funded by the Gordon and Betty Moore Foundation. Patients’ loss of dignity was identified as one of seven preventable harms the project would work to reduce, explains Gail Geller, another Berman Institute faculty member working on the respect and dignity aspect of the ICU project.

 

“It is disrespectful to overlook patients’ values and preferences in the process of providing even the best medical care.  If patients and families are not asked about their goals of care, it is a violation of respect.  Moreover, the quality of their care may actually suffer,” Geller says.

 

A tangible outcome of the project is the development of a “tablet” or technologic strategy for understanding patients’ experiences and preferences, informing them about important developments in their care, addressing their concerns and seeking their input in decision-making, Geller says.

 

The tablet app was discussed in a recent front-page story in the Washington Post profiling patient Joe Mox and his wife:

 

Mox’s personal details were typed into a specially designed iPad by his wife, Lisa. A questionnaire on the tablet, provided by the hospital, also posed a list of intimate questions for her husband: What do you fear most about the ICU? What brings you joy? What gives you strength?

The program is part of a fundamental change in health care that is giving top priority to improving the experience of the patient, an aspect of care that too often has been overlooked.

 

Geller highlights four key common responses from surveys of ICU patients and their families of what it meant to them to be treated with respect and dignity: asking about their values and wishes; being responsive to their needs and concerns; honoring their privacy; and focusing attention on them rather than clinical colleagues or the machinery monitoring their bodily functions.

 

“Of course circumstances can be extreme in the ICU, but as much as possible these basic considerations of the patient as a person must be made,” Geller says.

 

Importantly, the technology is a two-way street, Geller explains. “The tablet, does not only ask questions of patients.  It also provides important information to patients.  It can prepare them for that day’s tests and procedures, it can orient them to the equipment in the room and explain which sounds are normal and which are not, and it can introduce them to the members of the clinical team so patients know the names and specialties of those who are taking care of them.”

 

The Washington Post reports that Lisa Mox feels “less anxious about her husband because his doctors know he’s not just the cancer patient in Room 52. The hospital can tell who on his medical team has looked at his information.”

 

The multidisciplinary team from the Berman Institute, along with colleagues from the Armstrong Institute for Patient Safety and Quality, recently published their novel, multi-method approach to these issues as seven distinct articles in a dedicated supplement to the journal Narrative Inquiry in Bioethics. In addition to working to develop the tablet app, the team developed a conceptual model of respect and dignity, conducted observational qualitative research and survey-based quantitative research, and analysis.

 

Moving forward, the team acknowledges both practical and cultural challenges. “The tablet has been developed and is being pilot-tested now but before it is implemented on a large scale, we need to train ICU staff in its use and develop a way of measuring its impact.  We are engaging in that process of measurement development now,” Geller says.

 

Rushton agrees. “We will be challenged to create a system where the relational aspects of respectful care are valued and expected rather than relying on heroic acts to demonstrate them.”

 

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Related:

 

Read a press release about the Narrative Inquiry in Bioethics supplement

 

Check out the ‘Respect and Dignity’ Nursing Ethics twitter chat led by Cynda Rushton

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Contributors
Cynda Rushton
Gail Geller
Leah Ramsay

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