Unmet Care Needs of End-Stage Dementia, Article Review Example

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

Purpose

While significant improvements in hospice utilization by dementia patients have occurred at the national level, not all communities within the United States have benefited.  There is a need to better understand provider-associated barriers to hospice utilization, escpecially in an environment where determining an accurate prognosis for dementia patients can be challenging. Nursing home (NH) organizational structures and care culture can play a role in encouraging timely hospice referrals for patients suffering from end-stage dementia.

Material & Methods

A descriptive study was conducted to evaluate the perceived clinical utility of an advanced dementia end-of-life planning and prognosis (ADEPP) tool.  The tool was developed to educate clinicians about best-practice guidelines for ACP, and provide guidance for making an accurate diagnosis of end-stage dementia within Lee County, Florida. The questionnaire used was based on a near-identical tool developed and utilized by Snyder and colleagues. ¹ A sample of 100 dementia care providers comprised of physicians and nurse practitioners (NPs) received a copy of the Primary Care Physician Questionnaire, and the ADEPP tool, for the purpose of assessing their usefulness.  This study used two tools for analysis, the first being the ADEPP tool, and the second was a follow-up phone interview to a number of the participants. Both methods intended to assess participant receptivity before and after being introduced to the latter tool (ADEPP), to analyze its usefulness. The original questionnaire data revealed widely divergent beliefs concerning best practice guidelines in which to care for this patient population, beliefs which seemed to be remedied to some extent after exposure to the ADEPP tool.

Results/Discussion

Of the 100 questionnaires mailed to providers in Lee County, Florida, only 21 were completed and returned.  The primary responders were medical doctors, osteopathic doctors, and nurse practitioners.  Over 95% had at least 6 years of experience practicing medicine and nearly a quarter had over 20 years of experience.  The percent of patients per survey participant with progressive, chronic, life-limiting diseases were 50% (median) and 53.4% (mean), respectively. By comparison, the percent of terminally-ill patients being treated by each participant was 5% (median) and 32% (mean), respectively. This indicates that most participants were treating only a few terminally-ill patients, while a small number of participants were treating a large number of these patients.  The mean number of palliative and hospice referrals made by participants within the past six months was 7.6 and 4.9, respectively.  This data suggests only a few patients may be benefitting from palliative and hospice services among the many who may qualify.  Nine of the questionnaire participants agreed to the second portion of the study; being interviewed by telephone concerning the clinical acceptance and utility of the ADEPP tool.  When interviewees were asked whether the ADEPP tool was clinically useful the majority of providers felt the information was concise, well-thought out, relevant, and clinically valuable.  Importantly, several providers reported implementation of the tool in their practice. The final interview question asked providers about perceived barriers to palliative and hospice referrals, but no evidence of a consensus could be found.  All aspects of the health care system was faulted, including billing problems, hospice staffing issues, lack of hospice education for both families and providers, and clinicians unwilling to terminate curative treatment plans.

Conclusions

Evidence was presented and discussed that suggested patients suffering from end-stage dementia continue to experience wide-spread unmet care needs, despite a significant increase in hospice LOS over the past decade.  Given the prevalence and importance of clinician-associated barriers, interest and acceptance of the ADEPP tool revealed provider attitudes and practices will respond to such interventions.

Clinical Relevance
Provider reactions to the ADEPP tool suggest that a simple, cost-effective intervention could significantly improve hospice utilization and thus decrease the prevalence of unmet care needs among this patient group.  This research shows that the willingness for practitioners to utilize ADEPP can inform the medical community in more successfully treating those suffering from end-stage dementia, and increase timely utilization of palliative and hospice services.

Keywords

Dementia, palliative care, hospice, advance care planning, barriers, provider education.

References

Snyder S, Hazelett S, Allen K, Radwany S. Physician knowledge, attitude, and experience with advance care planning, palliative care, and hospice: Results of a primary care survey. Am J Hosp Palliat Care 2013; 30(5), 419-424.