Article Attachment: Kuebler KK. National Graduate Nursing Survey: Chronic Disease, Symptoms and Self-Management. Journal of Palliative Care and Medicine 2014 Sep 5 (PDF, 470 KB)
- Describe your topic.
- The integration of palliative care in the management of symptomatic multiple chronic conditions vs. reserving symptom management (palliative care) for the last 6 months of life. Palliative care should not be associated with end-of-life or hospice care. Palliative care in all other countries is used to support patients and families with advanced chronic conditions to remain asymptomatic, maintain physical functioning and reducing acute exacerbations and admission to hospital.
- Describe why this topic is important.
- Palliative care should be integrated into the primary care setting and not isolated or used synonymously with end-of-life or hospice care. Coordinated, comprehensive care for patients and families living and dying from symptomatic multiple chronic conditions ensures a focus on maintaining physical functioning, a reduction in chronic disease exacerbations - preventing debility and costly care associated with disease progression and frequent utilization of healthcare resources. POPULATION: Adult patients: 18 through death living with symptomatic multiple chronic conditions (2 or more concomitant chronic conditions), relying on the U.S. Department of Health & Human Services definition of Multiple Chronic Conditions, and relying on the HHS MCC Strategic Framework https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3115206/ INTERVENTIONS: Implementation of interdisciplinary, comprehensive, coordinated care that focuses on symptoms in patients living with advanced diseases. Limiting aggressive and expensive care - focus on preventing development of symptoms that lead to exacerbations (heart failure, chronic obstructive pulmonary disease, chronic kidney disease etc), reducing symptom burden, improves quality of life - is less costly and can be used and implemented easily through primary care providers OUTCOMES: Coordinated, comprehensive primary care - reducing fragmented care, focusing on quality of life, physical functioning, preventing symptoms, reducing exacerbations, debility, hospital admission and frequent use of healthcare resources
- Tell us why you are suggesting this topic.
- I have been at the forefront of the development, definition and implementation of palliative care use in chronic conditions for over 30 years. Studied in Canada, England and China and witnessed the intended use of palliative care in symptomatic chronic conditions - including cancer. In the U.S. Hospice Care has defined Palliative Care and it is associated with end-of-life - this is inaccurate. Palliative Care can easily occur with routine disease management - with a focus on utilizing the interdisciplinary team to assure patient needs are supported prior to a crisis situation - which unfortunately occurs far to often - leading to unnecessary and costly care for millions of Americans. Recently, the International Association of Hospice and Palliative Care has defined palliative care as skilled symptom management much sooner than end of life care. I have conducted 4 research studies investigating last semester registered nursing students, masters and doctoral nursing students and graduate nursing faculty on self-perceived knowledge vs. actual knowledge of the management of common symptomatic chronic conditions and self-management. The findings from these 3 pilot studies are startling all groups failed 40-item objective evaluation taken directly from current guideline recommendations. Faculty scored the worst. A systematic review was conducted, investigating the evidence on the integration of chronic disease, symptoms, palliative care, self management etc inclusion in graduate nursing curriculum - the literature was deplete, including this content from the American Association Colleges of Nursing that sets the content criteria for all nursing curriculum in the U.S. Similar studies can investigate other disciplines. If the U.S. embraced palliative care similarly to well-defined programs in Europe, Canada, Australia etc - this area of healthcare would dramatically change the manner in which the largest, fastest growing and costliest U.S. patient population is managed.
- Target Date.
- 2020-01-05
- Describe what you are doing currently and what you are hoping will change because of a new evidence report.
- Primary care provider U.S. Department of Veterans Affairs, Community Outpatient Clinic, Grants Pass, Oregon. I currently integrate palliative care or symptom management into routine practice, because of my experiences and understanding. There needs to be a broader understanding of how this can occur within the VA system reducing fragmented costly care and losing patients to speciality providers outside of the VA health system. There needs to be better understanding of how to focus on symptom management by primary care providers and less reliance on fragmented costly care.
- How will you or your group use the information from a new evidence report?
- New evidence report that seeks information outside of the U.S. on this topic is needed to direct effective primary care for this patient population in the U.S. Hospice care is NOT palliative care and Hospice cannot own the definition and direct how this is used in the U.S. This report can strengthen comprehensive, interdisciplinary, coordinated care between the patient and his or her primary care healthcare team. There are many patients that are between the cracks of aggressive primary care and end of life. This report can provide a strong influence on effectively defining, influencing and demonstrating how evidence-based palliative care can improve the outcomes in patients who are living and dying from symptomatic chronic conditions
- How would you or your group plan to disseminate information from the report? Who would you plan to disseminate it to?
- Collecting important patient-centered outcomes that include: sound assessment and evaluation of specific disease markers (ejection fraction, pulmonary function test, Hemoglobin A1c, microalbumin to name a few), how clinical markers and earlier interventions can prevent disease exacerbation, reduce symptom burden and prevent costly unnecessary care. Use of rehabilitation, integration of multiple disciplines and reducing fragmented care or loss of patient to speciality. Data disseminated throughout the U.S. Veterans Administration. Dissemination to national curriculum bodies in nursing, medicine and ancillary healthcare professional programs. Dissemination to Centers for Medicare and Medicaid to promote better care for their beneficiaries.
- Do you know of organizations that could use an evidence report to change clinical practice? Are you a part of, or have you been in contact with, any organizations that might implement the research findings of an evidence report?
- Almost all healthcare organizations in the U.S. who care for, participate in and develop educational content can be affected by this evidence report. Patients who are living with and dying from symptomatic chronic conditions are the largest, fastest growing and costliest U.S. patient population.
- Information About You: (optional)
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- Provide a description of your role or perspective.
- Primary Care Provider - Doctor of Nursing Practice
- If you are you making a suggestion on behalf of an organization, please state the name of the organization.
- Please tell us how you heard about the Effective Health Care Program.
