Addressing Hidden Suffering in Dementia Patients
Nursing home residents with cognitive impairments often experience significant distress, including pain and anxiety, yet struggle to communicate these symptoms effectively. This communication barrier creates a substantial challenge for healthcare providers attempting to deliver appropriate palliative care interventions.
The lack of structured symptom data in electronic health records (EHRs) compounds this problem, leaving clinicians without critical information needed for treatment decisions. Without reliable symptom tracking, residents with dementia may suffer unnecessarily from untreated or undertreated conditions.
UPLIFT-AD Research Transforms Assessment Tools
Researchers from the Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer’s Disease (UPLIFT-AD) team have developed a solution to this pressing healthcare challenge. Led by Dr. Kathleen Unroe and Dr. John Cagle, the team has successfully validated an enhanced symptom assessment tool specifically designed for nursing home residents with moderate to severe dementia.
This innovative approach adapts an existing assessment framework originally intended for post-mortem symptom reporting by family members. The enhanced tool enables both nursing home staff and family members to report real-time observations of living residents, providing valuable data to guide palliative care interventions.
Standardized Assessments: Critical Yet Underutilized
Dr. Unroe, a research scientist at the Indiana University Center for Aging Research at Regenstrief Institute, emphasizes the importance of standardized assessments in managing symptoms for cognitively impaired patients.
“Standardized assessments, relying on observation of clinical staff, do exist for people with cognitive impairment,” she explained to Healthcare IT News. “This observational data can be captured in standard clinician assessment notes.”
However, the consistent integration of these assessments into EHR systems remains problematic. The issue isn’t primarily technical limitations but rather workflow optimization and staff training challenges.
EHR Integration: Prioritizing Basic Implementation
While some may suggest artificial intelligence or machine learning solutions for symptom detection, Dr. Unroe identifies a more fundamental priority: ensuring symptom assessment data consistently appears in EHRs in an accessible, structured format.
“The first step is to get symptom assessment data into EHRs, by integrating assessments, and documentation of assessments, into clinical workflows,” she noted.
Successfully implementing this approach requires nursing home clinicians to document symptoms consistently, supported by IT systems that facilitate seamless data entry and retrieval.
Care Coordination Through Information Exchange
Improving palliative care delivery also demands better coordination between healthcare providers. Nursing homes often function in isolation, creating information barriers when residents require hospital care or specialist consultations.
Dr. Unroe advocates for increased participation in health information exchanges to address this issue. “Participation of nursing homes in health information exchanges and direct data exchanges, such as via portals, with hospitals is critical to ensure safer transitions of care,” she explained.
By connecting nursing home EHRs with broader healthcare networks, all clinicians gain access to vital symptom information, enabling more informed palliative care decisions.
Future Innovations: Automation and Screening Tools
Looking ahead, healthcare IT solutions offer significant potential for streamlining palliative care processes. Automated screening tools integrated within EHR systems could revolutionize how nursing homes identify residents needing specialized palliative interventions.
“Automated identification of patients likely to benefit from palliative care, and the ability to generate lists of patients appropriate for referral, can take the burden of that process off of nursing home staff,” Dr. Unroe concluded.
This proactive approach would ensure timely consultations and interventions, ultimately improving quality of life for nursing home residents with cognitive impairments.
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