Dementia is a progressive, incurable neurocognitive disorder, characterized by deteriorations in functional ability, cognition, and behavior.
In the United States, an estimated fourteen percent of older adults aged 71 years or older suffer from some form of dementia (Alzheimer’s Association, 2018). Alzheimer’s dementia accounts for eighty percent of all dementia diagnosis. In 2018, an estimated 5.5 million older adults in the United States currently live with Alzheimer’s dementia, with an expected increase to 7.1 million older adults by 2025 (Alzheimer’s Association, 2018). This expected increase in older adults living with dementia poses special challenges to the healthcare system.
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As dementia advances, patients suffer from profound memory loss, decreased functional ability, decreased ability to mobilize, and incontinence (Mitchell, 2015). Of these complications, eating problems, including dysphagia, aspiration, the inability to self-feed, and refusal to eat, occur most frequently in patients with advanced dementia (Mitchell, 2015). When eating difficulties occur, health care professionals and family caregivers often must decide between continuing to feed by mouth or placing a percutaneous endoscopic gastrostomy (PEG) feeding tube to maintain nutritional status. Older adults with advanced dementia lack the capacity to make autonomous decisions and therefore, rely on family members and surrogates to make these complex decisions. Little evidence supports the placement of PEG feeding tubes in older adults with advanced dementia (Sampson.
Candy, & Jones, 2009). One recent literature review found no improved long-term survival in older adults with severe dementia who received a PEG tube (Goldberg & Altman, 2014). Given this evidence, several professional organizations no longer recommend the placement of feeding tubes in older adults with advanced dementia (American Academy of Hospice and Palliative Medicine, 2013; American Geriatrics Society, 2014; Hospice and Palliative Nurses Association, 2011). Healthcare professional face the complex challenge of guiding patients and families in this decision-making process. Palliative Care (PC) consultations may provide patients, family caregivers, and healthcare professionals with assistance in making these decisions.
Review of Evidence A systematic literature review was conducted using PubMed and CINAHL Plus between November 1, 2008 and November 1, 2018, to capture research conducted within the last 10 years. Search terms included “Terminal care,” “palliative care,” “Hospice and Palliative Care Nursing,” “Palliative Medicine,” Enteral Nutrition,” “Jejunostomy,” Gastrostomy,” and “Dementia.” The initial search yielded 95 results.
Article titles were screened for topic relevance, duplication of search results, and specificity. Figure 1 shows the inclusion and exclusion criteria. The abstracts of twenty-six articles were read for relevance. From the search conducted on PubMed and CINAHL Plus, eight articles met the inclusion criteria of the literature review. Four articles focused on the decision-making process for family caregivers and surrogate decision makers (Beger, Hilda, Chen, Friedman, & Grendell, 2011; Gil, Agmon, Hirsch, Ziv, & Zisberg, 2018, Modi, Velde, & Gesser, 2011; Teno, Mitchell, Kuo, Gozalo, Rhodes, Lima, & Mor, 2011). One study examined family member perception of PEG tube decision making These findings suggest that more robust conversations about feeding tube placement should occur with family caregivers and surrogate decision makers.Statement of Problem and Aims Based on the review of literature, the process of decision-making for placement of a feeding tube in older adults with advanced dementia appears inconsistent and incomplete. In addition, these decisions often lack interdisciplinary collaboration.
Little research exists on interventions that assist patients, families, and care teams on decision making. Worse, no current literature exists on the use of palliative care consultation for this specific purpose. Thus, the aim of this quality improvement project is to increase patient, family caregiver, and interdisciplinary satisfaction with the decision-making process surrounding feeding tube placement in patients with advanced dementia. Specifically, this project aims to increase satisfaction scores by 50% within six months.Implementation Model: The Plan-Do-Study-Act ModelThe Plan PhaseSettingBeth Israel Deaconess Medical Center (BIDMC) is a major academic medical center with 673 inpatient beds located in Boston, Massachusetts.
In 2017, BIDMC saw 40,616 inpatient discharges (Caregroup, 2018). Older adults comprise a significant percentage of the medical center’s inpatient population. From 2015 to 2017, BIDMC saw an increase in patients aged 65 and older from 33% to 35% (CareGroup, 2018). Specific information on the percentage of these patients who have a diagnosis of dementia is lacking.
However, older adults with dementia typically have twice as many hospital admissions per year when compared to older adults without dementia (Alzheimer’s Association, 2018). Based on these figures, BIDMC presumably cares for a significant population of older adults with dementia. In 2000, the medical center first implemented a palliative care consultation service, which consisted of one nurse practitioner and one attending physician. Currently, the service consists of a large interdisciplinary team who operate throughout the medical center. This service receives 80 inpatient consults every month and serves 200 outpatients every year. ParticipantsThe project team will consist of the Palliative Care Advanced Practice Nurse (APRN), the inpatient Chief Medical Resident (CMR), the Director of Internal Medicine (DIM), the Nursing Director (ND), the Quality Improvement (QI) Director, a patient-family advisor, two research assistants, and the Nurse Educator (NE). The APRN and CMR will act as the team clinical leaders and will oversee all aspects of the project from planning to analysis. The ND and NE will provide process ownership to ensure communication with all stakeholders and help coordinate the implementation of the project.
The QI director will act as the technical director and will provide the team with expertise in quality improvement methods. The DIM will act as the executive sponsor of this project and will help to allocate resources for the project as well as hold the team responsible for results. The patient-family advisor will provide guidance to ensure the project intervention is both patient- and family-centered. The research assistants will help collect and analyze data throughout this process. Other stakeholders include social workers, staff nurses, speech-language pathologists, case managers, and nutrition.
The Do Phase InterventionFigure 2 outlines the intervention process. Two inpatient medical units will trial the intervention over the six-month implementation period. A patient with advanced dementia admitted with dysphagia and/or aspiration or who is declining oral intake will trigger a PC consultation by any member of the interdisciplinary team. The family or surrogate decision maker and patient will both be present during the consultation. The APRN will lead the process and will include other members of the interdisciplinary team.
The consultation will focus on a) stage, prognosis, and trajectory of dementia, b) current feeding options i.e. hand-feeding or PEG placement, c) cultural, spiritual, and family concerns, and d) goals of care decision-making. The Study PhaseMeasures for ImprovementThe aims of the QI project will be measured using three different pre/post surveys: (a) the revised Family Satisfaction with End of Life Care scale (FAMCARE-2), (b) the Health Care Team Vitality Instrument (HTVI), and (c) the Dementia Care Mapping Tool (DCM).FAMCARE-2 measures family caregiver satisfaction of palliative care received by both the patient and family using seventeen items. The family member ranks each item from very satisfied to very dissatisfied.
This scale shows significant reliability in measuring family caregiver satisfaction across a variety of palliative care settings (?= .93) (Aoun, Bird, Kristjanson, & Currow, 2010). Family caregivers and surrogates will submit this survey electronically via an iPad on the unit. The Act Phase Post- intervention discussions will occur one month