Tackling Provider-Associated Barriers Concerning End-Of-Life Dementia Care Dissertation

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End-Stage Dementia

Addressing the Unmet Care Needs of End-Stage Dementia Patients through Provider Education: The Advanced Dementia EOL Planning and Prognosis (ADEPP) Tool

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Geraldine Bodven, [Academic Degrees], University of South Alabama

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Addressing the Unmet Care Needs of End-Stage Dementia Patients through Provider Education: The Advanced Dementia EOL Planning and Prognosis (ADEPP) Tool

While significant improvements in hospice utilization by dementia patients have occurred at the national level, not all communities have benefited. To better understand provider-associated barriers to hospice utilization, a descriptive study was conducted to evaluate the perceived clinical utility of an advanced dementia end-of-life planning and prognosis (ADEPP) tool, a tool providing best practice and prognosis guidelines, within a Florida community where the average hospice stay is just 10 days. Questionnaire data revealed widely divergent beliefs concerning best practice guidelines for this patient population prior to tool exposure, beliefs which seemed to be remedied to some extent after exposure to the ADEPP tool. Overall, provider reactions to the ADEPP tool suggest this inexpensive intervention could increase hospice utilization for this patient group and therefore reduce the prevalence of unmet care needs.


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dementia, palliative care, hospice, advance care planning, barriers, provider education

Clinical Efficacy Evaluation of the Advanced Dementia EOL Planning and Prognosis (ADEPP) Tool


Dissertation on Tackling Provider-Associated Barriers Concerning End-Of-Life Dementia Care Assignment

The U.S. Centers for Medicare and Medicaid Services (CMS) has been tracking hospice patients by diagnosis for the past decade and the data collected reveals significant improvements in the number of days dementia patients spend in hospice. Between 1998 and 2009, average length of stay (LOS) for patients with a diagnosis of Alzheimer's disease increased from 67 to 106 days, while patients with a diagnosis of non-Alzheimer's dementia increased from 57 to 92 days.1 This seems like good news, given the findings of a limited study which revealed the benefits of hospice services noticed by family members peaked around 90 days.2 The national data therefore seems to indicate dementia patients have succeeded in reaching a reasonable average LOS.

Not all locations within the United States appear to be benefiting equally, however. In Lee County, Florida, for example, the average hospice LOS for all patients, regardless of diagnosis, was just 10 days.3 This statistic is troubling in part because the percentage of residents 65-years of age and older within this community is double the national average.4,5 These statistics would also suggest that twice as many Lee County residents suffer from dementia when compared to the rest of the nation. The prevalence of dementia for this age group is unknown, but estimates suggest that 5 million Americans 65-years of age and older suffered from Alzheimer's disease in 2014,6 the most common cause of dementia.7 The number suffering from non-Alzheimer's dementia probably represents another 3% of the population,8 for a total of approximately 14% for this age group. Applying this estimate to the residents of Lee County would suggest that almost 24,000 residents, 65-years of age and older,4 suffer from some form of dementia.

In 2012, the sole hospice provider in Lee County, Hope Hospice and Community Services, provided hospice services to 4,705 Lee County residents.3 The State of Florida estimated that approximately 13% of hospice patients would have had a primary diagnosis of dementia, which translates into an estimated 612 residents. With an average life expectancy of 6 years following diagnosis,7 the number of Lee County residents 65-years of age and older who were suffering from dementia and had less than 6 months to live would be approximately 2,000. Based on these calculations, approximately 1400 residents, or 70% of all residents with end-stage dementia, probably never receive hospice services, let alone receive them in a timely manner. In addition, it is important to note that only about half of all Americans estimated to suffer from dementia ever receive a formal diagnosis.9 Clearly, hospice is being underutilized by dementia patients in Lee County and when services are obtained the estimated average LOS is only 10 days.

The underutilization of hospice by dementia patients has been attributed to a number of variables. According to a survey of 800 U.S. hospice program directors the primary barriers to hospice utilization was provider and family ignorance of hospice services,10 a conclusion confirmed by a number of other studies.11-13 Primary caregivers residing in Connecticut almost uniformly reported provider indifference to an expressed need for EOL planning and palliative/hospice services.13 Whether perceived provider indifference was due to ignorance10 or the lack of Medicare reimbursement for clinician-initiated EOL planning14 is unknown, but it seems likely that both could be contributors.

Other barriers include prognostic accuracy and provider discomfort with terminating curative treatments;15,16 however, determining an accurate prognosis for dementia patients can be challenging.17,18 The difficulty of determining an accurate prognosis is exacerbated by the Medicare definition of 'terminally ill' as having less than 6 months to live,19 thereby making this task even more difficult. In a recent survey, nearly all physicians caring for patients with life-limiting illnesses reported feeling comfortable discussing advance care planning (ACP) with patients and family members, but did this only 43% of the time.20 In addition, less than 30% believed advance care wishes were ever honored. Physicians are also less likely to discharge dementia patients from inpatient psychiatric care to nursing homes (NHs) offering hospice services21 and NH organizational structure and care culture can play a role in determining whether hospice services are offered and utilized.22-25 Based on these findings, there are significant provider and organizational barriers to timely hospice referrals for patients suffering from end-stage dementia.

The overall goal of hospice care is to eliminate the unmet care needs of patients and family members as death approaches. Accordingly, researchers at the UCLA Medical Center implemented an end-of-life (EOL) Symptom Management Order (EMSO) protocol to help determine whether patients with life-limiting illnesses were eligible to receive a continuous opiate infusion for effective pain management.26 Certain criteria needed to be met, including an active DNR, documented discussions of care goals with patient and family members, and a consensus reached between clinicians, patient, and family members about transitioning to comfort-oriented care. Clinicians also considered the extent of limitations for activities of daily living (ADL) and the disease and caregiver burden. Importantly, a post-implementation study revealed the EMSO protocol significantly reduced the prevalence of unmet care needs among dying patients.26

The success of the EMSO protocol begs the question of whether a similar intervention could improve hospice utilization by end-stage dementia patients in Lee County, Florida, thereby reducing the prevalence of unmet care needs among this patient group. Towards this goal, an Advanced Dementia EOL Planning and Prognosis (ADEPP) tool was developed to educate clinicians about best-practice guidelines for ACP and provide guidance for making an accurate diagnosis (Appendix A).


Study Design

The study design was primarily descriptive and was based on the data collected from a questionnaire and interviews. The questionnaire was essentially identical to that developed and utilized by Snyder and colleagues,20 except the demographic question about provider academic degree, question 23, was expanded to include nurse practitioner (NP). The first step was to ask participating providers to complete the questionnaire and return it to the researchers prior to reviewing the ADEPP tool (Appendix A). The second step involved providers reviewing the ADEPP tool and using it in their clinical practice if they wished. The perceived acceptance and utility of the tool was then evaluated using a set of interview questions (Appendix B) communicated by phone.


Project participants were physicians and nurse practitioners (NPs) practicing in Lee County, Florida. Provider names and contact information were obtained from the Lee County Medical Society, via internet searches, and personal contacts. Letters of inquiry were sent to clinicians selected by the following criteria: (1) providers licensed in the State of Florida, (2) residing in Lee County, Florida, and (3) providing care for patients suffering from advanced dementia. There were no exclusion criteria. No attempt was made to select for a specific demographic defined by age, gender, race, or ethnicity.


The questionnaire,20 modified slightly to include the category of NP for question 23, will be used to evaluate physician attitudes and practices before exposing participants to the ADEPP tool. The reliability of the survey was sufficient (Cronbach's alpha = .68) and the internal validity verified using a number of different questions about the same topic.20 The questionnaire was designed to collect quantitative and qualitative data, in addition to demographic data. The set of interview questions (Appendix B) was designed to evaluate the acceptance and clinical utility of the ADEPP tool (Appendix A).

Intervention and Data Collection

A sample of 100 dementia care providers received by mail a single envelope containing a letter of inquiry, consent form, a copy of the Primary Care Physician Questionnaire,20 and another envelope containing the ADEPP tool. The letter of inquiry explained the purpose of the quality improvement project, while the consent form asked providers to voluntarily participate… [END OF PREVIEW] . . . READ MORE

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