Abstract
Background:Advance care planning (ACP) benefits patients and caregivers, yet it is underutilized and little is known about ACP in Huntington’s disease (HD) clinics. This study sought to determine the percentage of charts with AD documentation within an HD clinic.Methods:A retrospective chart review was conducted on a randomly selected sample of charts within an HD clinic. HD patients ≥18 y/o with a positive genetic test (≥40 CAG repeats) seen between January 2018 and June 2021 were included. Charts were reviewed for documentation of ADs either in provider notes or in the electronic medical records (EMR).Results:Ninety-one charts were reviewed (n = 91). Twenty-two charts (24.2%) mentioned a completed AD within a provider’s note; however, only nine (9.9%) had an AD available in the EMR. Cognitive status, primary insurance type, presence of dysphagia, and stage of disease were associated with documentation of completed ADs within a provider’s note.Discussion:The rate of completed ADs mentioned in a provider’s note (24.2%) was significantly lower than rates of AD completion in a previous study within the HD population (38%). Additional studies focused on improving rates AD completion are needed.HighlightsMost patients with Huntington’s disease do not have documentation of completed advance directives (ADs) within their medical chart. In a retrospective chart review 24.2% of patients seen in a specialty HD clinic had documentation of ADs in a provider’s note and 9.9% had ADs available within the EMR.
Highlights
Advance care planning (ACP) is a process that allows patients the opportunity to share their life values, preferences for medical treatment, and wishes for end-of-life (EOL) care
In a retrospective chart review 24.2% of patients seen in a specialty Huntington’s disease (HD) clinic had documentation of advance directives (ADs) in a provider’s note and 9.9% had ADs available within the electronic medical records (EMR)
Savings are due to differences in medical treatment received near the EOL with ACP leading to decreased use of high-cost medical care such as inpatient admissions [2]
Summary
Advance care planning (ACP) is a process that allows patients the opportunity to share their life values, preferences for medical treatment, and wishes for end-of-life (EOL) care. It is universally recommended for individuals with life-limiting diseases and needs to be completed before loss of mental capacity occurs. ACP has numerous benefits including improving EOL experiences for patients and families, improving communication between patients, families, and healthcare professionals, and better concordance between the patient’s preferred medical treatment and medical care delivered [1]. Patients that engage in ACP and sign ADs save an estimated $9,500 in medical costs compared to those that do not [2]. This study sought to determine the percentage of charts with AD documentation within an HD clinic
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