Most patients suffering from terminal illness have expressed a desire to die at home surrounded by their loved ones. The current medical model emphasizes the disease aspects of the patient’s condition and often results in failed curative treatments. This results in patients spending time in the ICU and not with family members. This proposal provides an evaluation strategy for implementing a community palliative care intervention for end-stage dementia patients, with the goal of improving the quality of care and reducing admissions to ICUs and hospice facilities.
Community Dementia Care and the Chronic Care Model
End-Stage Dementia Evaluation Proposal
Health Promotion Plan for Community End-Stage Dementia Care: The Chronic Care Model
Health Promotion Plan for Community End-Stage Dementia Care: The Chronic Care Model.
In 2013 an estimated 5.0 million Americans over the age of 65 suffered from Alzheimer's disease (Alzheimer's Association, 2013). Although the U.S. Centers for Disease Control and Prevention (CDC) considers dementia/Alzheimer's to be the fifth leading cause of death among adults 65-years of age or older, careful examination of Medicare claims data revealed that dementia is probably right behind cardiovascular disease as the second leading cause of death for this age group (Tinetti et al., 2012). Most of these patients would prefer to die at home, not only because of comfort concerns, but due to the higher quality of care that tends to be provided by informal and paid caregivers in this setting (reviewed by Teno et al., 2013). Unfortunately, nearly half (42.2%) of all dementia patients receiving Medicare coverage died in a hospice setting in 2009, compared to only 21.6% in 2000 (Teno et al., 2013). This may be good news for policymakers interested in increasing the use of hospice care, but not patients preferring to die in their own homes surrounded by loved ones. In addition to the increased reliance on hospice care, ICU admissions during the last 30 days of life increased during the same period. Improving the quality of the home-based palliative care experience may be one way to reverse this trend. Accordingly, a health promotion plan advocating the benefits of the Chronic Care Model (CCM) for home-based dementia care has been developed. What follows is a description of the intervention and the proposed outcome measures that will be used to evaluate the efficacy, efficiency, and quality of the intervention.
Intervention
The efficacy of CCM as an intervention for increasing the quality of home-based palliative care is currently being investigated by researchers (Brodaty & Donkin, 2009). The CCM has six core elements: (1) explicit protocols and policies, (2) emphasis on patient-centered care, (3) comprehensive services, (4) systematic attention to patient information and behavioral needs, (5) integrated multidisciplinary care, and (6) information systems to support clinical objectives. Preliminary research findings for a small, randomized Ohio sample (N = 80) provided trend data that supported the utility of CCM for reducing the number of unscheduled visits to hospitals and admissions to nursing homes (Radwany et al., 2013). A similar study, also with a small, randomized sample (N = 125), was completed in Finland, which revealed significantly lower rates of institutional care after 1.6 years and reduced healthcare spending (p = .03) (Eloniemi-Sulkava et al., 2009). What both studies reveal is that CCM can be implemented successfully and without substantially increasing overall healthcare spending. For these reasons, a health promotion plan for home-based dementia care has been proposed.
Efficacy Evaluation
Researchers have shown that individual elements of the CCM significantly delayed and/or prevented the use of institutional care during the last days of life (reviewed by Eloniemi-Sulkava et al., 2009). The CCM intervention implemented in Ohio incorporated a care manager who orchestrated healthcare services for both the patient and family members within a provider network (Radwany et al., 2013). This network consisted of the care manager, hospital-based geriatricians, primary care providers, and health care facilities. One of the expected benefits of the care network, for example, is seamless transitions between care settings. Another benefit would be a patient- and family-centered care orientation, such that the physical, psychological, and spiritual needs of the patient and family caregivers are addressed. The evaluation outcome measures for intervention efficacy should therefore include methods and instruments that can quantify how effective care transitions are being made and whether the quality of life for patients and family caregivers is improved compared to standard care.
Eloniemi-Sulkava and colleagues (2009) reviewed the concerns of family caregivers when caring for dementia patients and among the most common were patient physical disability and the behavioral and psychological symptoms associated with dementia (BPSD). An effective intervention for home care of dementia patients would therefore need to quantify activities of daily living (ADL) and instrumental activities of daily living (IADL) (Radwany et al., 2013). In addition, the behavioral and psychological symptoms due to dementia should be followed during the study period using a clinical instrument (Eloniemi-Sulkava et al., 2009).
Another essential measure of the quality of an intervention is the experiences of the care team. When Peyrot and colleagues (2006) examined provider perceptions of the chronic care model for diabetes care the results were mixed. Providers in the United States perceived the CCM to be mediocre with respect to organization and receiving compensation for services rendered. By comparison, patients being treated under CCM felt the ease of access and patient-provider collaboration was high, while provider collaboration was mediocre. Patents also tended to experience some financial limitations to receiving diabetes care through CCM. When combined, these findings seem to reveal a lower opinion of CCM by providers than by patients. This seems to contradict the emphasis on patient-centered care within CCM and may reflect provider resistance to CCM implementation or a poor fit between CCM and the health care system in existence at the time. Whether implementation of the Patient Protection and Affordable Care Act (ACA) of 2010 will improve these perceptions is unknown, it seems likely that these questions will be on the minds of researchers as the ACA becomes the norm.
In summary, survey instruments and patient records will be used to quantify the effectiveness of the care provided under CCM, patient (PQOL) and family caregiver (FCQOL) quality of life, ADL, and BPSDs. In addition, provider experiences of the intervention will be gathered using a questionnaire.
Evaluation Strategy
As recommended by the CDC (n.d.), an evaluation strategy should be created prior to intervention implementation and become an integral component of the intervention going forward. While some of the evaluation methods proposed above may be too cumbersome for long-term and continuous evaluation of intervention effectiveness and quality, some would be amenable to long-term use. For the purposes of this proposal, however, the long-term feasibility of the evaluation measurement tools will not be considered here. The formative evaluation will depend on all of the above mentioned measurement tools, thereby providing objective information about the implementation process and its completeness, as well as information about how well the intervention is meeting its goals.
The overall evaluation strategy will involve recruitment of patients and family caregivers into the study. Informed consent will be obtained from both patients (when possible) and family caregivers prior to gathering baseline data. The baseline data will be obtained from providers, medical records, and questionnaires filled out by patients, family caregivers, and providers. Eloniemi-Sulkava and colleagues (2009) utilized a 2-year study period because anything longer proved to be counter-productive due to patient attrition. The follow-up evaluation occurred at 6, 12, and 24 months following inclusion of the patient in the study; however, the 6 and 12-month follow-ups proved to be the most informative due to patient attrition. Follow-up evaluations will depend on patient, family, and clinician participation, because quality of life, physical disability, behavioral and psychological problems, and institutional care utilization data will be gathered from all these sources using questionnaires and patient medical records.
CCM care managers will be responsible for collecting patient- and family-related information through questionnaires. Designated nurses working in the offices of geriatricians and primary care providers will be given the responsibility for gathering patient information from medical records. This information will be de-identified and assigned a case number prior to analysis. This data will then be collated and analyzed by researchers, who will produce a summative evaluation that can be used to quantify the efficacy and quality of home-based palliative care for dementia patients and family caregivers using CCM. The summative evaluation will be completed after the data gathering period in the study has been completed, which is expected to last a little over 2 years depending on the availability of patients and family caregivers.
Instruments
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