Introduction

Palliative care is a necessary and often forgotten aspect of care that can make a significant difference in the experience an individual faces when managing health conditions. Palliative care focuses on symptom management in the midst of a significant disease, and aims to achieve the ultimate goal of optimum quality of life. These symptoms can include pain, fatigue, appetite changes, sleep disturbances, nausea, constipation, shortness of breath and depression (Center to Advance Palliative Care, 2012). While this supplemental care is imperative for physical and psychological outcomes, palliative specific training or education is often lacking or missing from the curriculum of health care programs. One of the major barriers to palliative care in serious conditions, such as dementia, is the lack of provider knowledge. In order to achieve the optimum quality of life for patients struggling with serious diseases, health care providers need to have a foundation of knowledge regarding this type of care so it can applied throughout their career.

This topic stems from my doctoral applied project which concentrates on assessing pain in persons with advanced dementia. The project includes an extensive literature review that highlighted the lack of education in this area and the potential consequences of under-managed symptoms. Based on the findings from the evidence, I implemented educational sessions with nurse practitioners working in long term care facilities. Prior to the intervention, many of the nurse practitioners acknowledged that they were not given dementia specific training or education on pain assessment in this population. Not only did the project improve provider knowledge, but it increased the likelihood of use and dissemination of information to staff working at long-term care facilities. While these approaches to education are successful, the ideal approach is to include this education prior to practice where the knowledge can be standardized, presented by experts, and spread to a larger group of individuals.

One legislation that addresses this issue is H.R. 3119: Palliative Care and Hospice Education and Training Act. This bill seeks to expand the Public Health Service Act to include more palliative care experts as faculty in health care programs  (GovTrack, 2016). It serves the ultimate goal of addressing the lack of palliative care knowledge included in health care programs. This bill was recently introduced and referred to committee on July 21, 2015. The bill reflects the importance of building a solid foundation of knowledge in order to maximize patient care. Empowerment through education is fundamental to achieve the safest and most effective palliative care for individuals who are in state of suffering.

“If you learn to listen for clues as to how I feel, instead of what I say, you will be able to understand me much better” -Mara Botonis

References

GovTrack. (2016). H.R. 3119: Palliative care and hospice education and training act. Retrieved from https://www.govtrack.us/congress/bills/114/hr3119

Center to Advance Palliative Care. (2012). What is palliative care? Retrieved from https://getpalliativecare.org/whatis/

 

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6 thoughts on “Introduction”

  1. Thank you for your post, which is very relevant in healthcare today, in particular with healthcare reform occurring. At the organization I work in, we have implemented both an inpatient palliative care program as well as an outpatient palliative program. This comes from the two prior unsuccessful inpatient palliative care programs previous implemented. The lessons learned were there needed to be a post discharge mechanism in place for continuum of care once patients have determined they want palliative care. Our palliative care program has been in place for 9 months now and we have seen a decrease in length of stay in our ICU (3 day reduction). We are also collecting data on readmissions for this patient population, but do not have anything statistically significant at this point.

    Your emphasis on education is spot on based on my experience. There is an overall lack of understanding of what palliative care is from providers, nurses, ancillary staff, students and patients. We have spent a significant amount of time educating our medical staff, nursing staff and ancillary staff. We have begun discussions with our local community college on educating students. I will be follow your blog to see what recommendations you develop throughout the semester.

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    1. Thank you for your reply. As you mentioned, increasing education regarding this topic is crucial if we hope to achieve optimal quality of life and end of life care for our patients. I am so pleased to hear that the organization you work for has identified this problem and is working towards a solution. This legislation would further build on the work in place by individual organizations to achieve more educators, research, and resources regarding palliative care.

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  2. Palliative care is an important service for those suffering with chronic or terminal illness. It is also an underutilized service. It will be interesting and exciting to see how this bill can affect change. Enhancing education could prove beneficial for providers to understand the true power palliative care services have at enhancing a patients quality of life. Not only does H. R. 3119 seek to enhance education, but it also seeks to establish fellowship programs for providers and increase research, which can prove extremely beneficial for providers and patients (American Cancer Society, 2015).

    American Cancer Society Cancer Action Network. (2015). Palliative care and hospice education and training act, H.R. 3119. Retrieved from://http://www.acscan.org/content/wp-content/uploads/2013/11/PCHETA-bill-summary-HR-3119.pdf

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    1. Thank you for your reply. You hit the nail on the head with your comment about increasing research on the topic. By expanding the cumulative knowledge base of providers and other health care workers, we can hope to continue to advance the progress towards optimum palliative and hospice care.

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  3. Thank you for examining this paramount topic. Increasing palliative care education for social workers, nurses, physicians, nurse practitioners, physician assistants and other healthcare professionals has the potential to maximize comfort and quality of life for persons facing life-threatening diseases (1). This focused education also may prevent moral distress that can arise when a healthcare provider feels poorly equipped to manage a seriously ill patient’s suffering (2).

    I am involved in palliative care education specific to persons with dementia, and assist in teaching medical residents and students through a Hospice of the Valley teaching program (3). The program participants receive didactic and hands-on training specific to hospice and palliative care, including care of persons with advanced dementia. Feedback indicates appreciation for learning new information with plans to integrate into practice, such as identifying and treating pain in persons with moderate to advanced dementia, and engaging in specific advance care planning conversations guided by evidence (i.e. research on feeding tubes, artificial hydration, antibiotic use, and CPR) so that patients and families/MPOAs can make informed decisions. (3).

    It sounds like we share a passion for recognizing and properly managing pain in persons with dementia who are unable to verbally express their internal experience of pain. As you mention, HR 3119 has the potential to further this ambition to alleviate unnecessary suffering.

    Thank you for what has certainly been an enormous amount of time and energy working on your doctoral project. I look forward to following your blog!

    References
    (1) HR 3119. (2015). Retrieved from https://www.congress.gov/bill/114th-congress/house-bill/3119/text.
    (2) Coyle, N. (2015). Introduction to palliative nursing care. In B. R. Ferrel, & N. Coyle (Eds.), Oxford textbook of palliative nursing (4th ed.). New York, NY: Oxford University Press.
    (3) Hospice of the Valley. (2015). Retrieved from https://www.hov.org/resident-education

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  4. Thank you for your reply. I am fascinated to hear about your experience educating and expanding the palliative care specialty. As you mentioned, the lack of knowledge can be both a burden for patients as well as health care workers. Personally, I have never felt adequately prepared to handle the various symptoms associated with certain diagnoses. Thus the spark that led to my DNP project.

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