Problem: Many cancer patients in Kansas have limited access to palliative and end-of-life care.1 For healthcare institutions in rural areas, significant barriers limit access to palliative care and end-of-life care.
1 Dumanovsky, T., Augustin, R., Rogers, M., Lettang, K., Meier D. E., & Morrison, R. S. (2015). The growth of palliative care in U.S. hospitals: A status report. Journal of Palliative Medicine, 19(1), 8-15. doi:10.1089/jpm.2015.0351
PSE Change Solution: The Palliative Care Program at the University of Kansas Hospital implemented institutional and statewide End-of-Life Nursing Education Consortium (ELNEC) Training, which is a palliative care training administered by the American Association of Colleges of Nursing. Over 700 nurses and other professionals, from 21 counties, completed the training. ELNEC training facilitated the development of a system-level strategy to embed palliative care nurse “coaches” at unit and programmatic levels to implement a standard palliative care bundle for seriously ill patients. The initiative also resulted in increased capacity for evaluation, due to the development of a palliative care module for the Kansas BRFSS.
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Problem
Many cancer patients in Kansas have limited access to palliative and end-of-life care (Dumansovsky et al., 2015). The 2015 State-by-State Report Card on Access to Palliative Care gave Kansas a 48.5 or C grade compared to the U.S.’s 66.3 or B grade1 (Center to Advance Palliative Care, 2015). For healthcare institutions in rural areas, significant barriers limit access to palliative care and end-of-life care, and a wide scope of provider education is necessary to close the gaps in access to these services. (Kansas Cancer Partnership, 2012).
1As reported in 2013 American Hospital Association Annual Survey. An A grade is defined as 80% or more of a state’s hospitals with 50 or more beds reporting a palliative care program (Grade B = 60%, Grade C = 40%, Grade D = 20%, Grade F < 20%).
PSE Solution
In response to the need to improve palliative care across the state, the Palliative Care Program at the University of Kansas Hospital implemented institutional and statewide End-of-Life Nursing Education Consortium (ELNEC) Training, using both in-person and interactive tele-video (ITV) capability. ELNEC is a palliative care training administered by the American Association of Colleges of Nursing to educate nursing students and practicing nurses, as well as other health care professionals.
To evaluate the training, the number of providers who attended was monitored, and course satisfaction surveys and pre- and post-tests were administered to understand the extent to which training increased participant knowledge and confidence in providing palliative care. In addition, six-month follow-up surveys were administered to participants.
To assess Kansas residents’ access to palliative and end-of-life care, state-specific questions were added to the Behavioral Risk Factor Surveillance System (BRFSS). The module asked questions pertaining to having a healthcare directive, receiving palliative care, pain management and emotional support. Repeating this BRFSS module, in one to two years, can provide information to measure progress over time.
Actions/Results
Response to expanded opportunities to enroll in ELNEC training was positive. Since May 2012, 700 nurses and other professionals completed the training. Six-month follow-up surveys of ELNEC participants consistently demonstrated improved confidence scores in several categories, as reported below.
The Kansas Department of Health and Environment’s cancer epidemiologist worked with the Comprehensive Cancer Control and Kansas BRFSS program staff to draft palliative care questions. These questions were sent to members of the state cancer coalition’s cancer action team, which was working on palliative care issues (Step 1: Engage). Partners provided feedback that was incorporated into the wording of the questions.
Success Factors and Key Questions Addressed
What difference(s) did the PSE change make in the short-term?
Seven hundred nurses and other professionals from 21 Kansas counties registered for and completed the training (22% via ITV). The six-month follow-up survey indicated continued improved confidence in discussing with patient his/her own dying, empowerment to work within multi-professional team, ability to assess patients’ needs and knowledge that palliative care is compatible with aggressive treatment. Additionally, a ZOOM2 cloud meeting platform was implemented in 2016 to reach a broader audience throughout the state.
The process of developing relevant BRFSS questions led to discussions about the definition and scope of palliative and end-of-life care. As a result, state cancer coalition members have a better understanding of these issues.
What difference(s) did the PSE change make in the long-term?
Successful ELNEC training facilitated the development of a system-level strategy to embed palliative care nurse “coaches” at unit and programmatic levels to implement a standard palliative care bundle for seriously ill patients. ELNEC became a core training for frontline providers. Another success for the Palliative Care Program at the University of Kansas Hospital was increased capacity for evaluation through the development of a population-based palliative care module for the Kansas BRFSS. This will result in the collection of data that may be used to establish baselines and targets for evaluation of activities intended to further progress towards a state cancer plan objective aimed at improving access to palliative care in Kansas. These data align with two key measures that are among those recommended by the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA). See AAHPM and HPNA’s Measuring What Matters.
Measuring What Matters (MWM) is “a consensus recommendation for a portfolio of performance measures for all hospice and palliative care programs to use for program improvement.” (AAHPM, n.d.). For the purposes of Kansas’s enhanced evaluation, the relevant measures are:
- Seriously ill palliative care and hospice patients have a documented discussion regarding emotional needs (Hanson et al., 2012; Schenck et al., 2014).
- Seriously ill palliative care and hospice patients have documentation of their preferences for life-sustaining treatments (Hanson et al., 2012; Schenck et al., 2014).
How did you measure/document the impact of the PSE change intervention?
The PSE change intervention has led to two major outcomes:
- Increased number of certified palliative care providers around the state.
- Increased capacity for evaluation due to the development of a palliative care module for the Kansas BRFSS.
More than 5,100 people responded to the nine new palliative care questions in 2016. Results from the 2016 BRFSS palliative care module show that less than one third (32.3%) of Kansas adults age 18 years and older have a health care directive or living will and about 3.3% received palliative care for a serious and chronic illness. Among those who received palliative care, 72% experienced physical pain caused by their illness or its treatment and about 57% experienced stress, depression or problems with emotions caused by their illness or its treatment.
Detailed data on all nine questions are available on the Kansas BRFSS website. This information will provide an opportunity to help partners understand the baseline of access to palliative and end-of-life care among cancer survivors in Kansas through the BRFSS. Over time, monitoring BRFSS responses to palliative care questions will provide data to indicate how well the expanded ELNEC-certified workforce has resulted in improved access to palliative care for the state.
Were there barriers to implementing the PSE change? If so, what were the lessons learned?
It was difficult to limit the number of BRFSS palliative care questions. The addition of questions is problematic, due to the combination of expense ($2,500 per question) and wanting to keep the overall survey length to a minimum. The final state-added module contained nine questions.
2ZOOM is a video and web conferencing service.
Related Resources
To learn more about the ELNEC program, visit the website of the American Association of Colleges of Nursing. For information about Kansas’s course, please see the ELNEC Program Course Schedule. Additional information may be obtained from the University of Kansas Medical Center Area Health Education Center at (620) 235-4040 or ahecpitt@kumc.edu.
To read more about Kansas’s goals related to palliative and hospice care, see their Cancer Prevention and Control Plan: 2017-2021.
REFERENCES
Center to Advance Palliative Care and National Palliative Care Research Center. (2015). America’s Care of Serious Illness: 2015 State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals. Retrieved from https://reportcard.capc.org/.
Dumanovsky, T., Augustin, R., Rogers, M., Lettang, K., Meier D. E., & Morrison, R. S. (2015). The growth of palliative care in U.S. hospitals: A status report. Journal of Palliative Medicine, 19(1), 8-15. doi:10.1089/jpm.2015.0351
Hanson, L. C., Rowe, C., Wessell, K., Caprio, A., Winzelberg, G., Beyea, A., & Bernard, S. A. (2012). Measuring palliative care quality for seriously ill hospitalized patients. Journal of Palliative Medicine, 15(7), 798-804. doi: 10.1089/jpm.2011.0471
Kansas Cancer Partnership. (2012, September 25). Kansas cancer prevention and control plan 2012-2016. Retrieved from http://kscancerpartnership.org/Kansas-Cancer-Plan.
Measuring What Matters. (n.d.). American Academy of Hospice and Palliative Medicine. Retrieved from http://aahpm.org/quality/measuring-what-matters.
Porter-Williamson, K., Redford, L., & Fox, M. (2015). The tipping point demands a return to primary palliative care: System and continuum wide education using the End-of-Life Nursing Education Consortium curriculum. Poster session presented at the meeting of the Center to Advance Palliative Care. Retrieved from https://www.capc.org/seminar/2015/tipping-point-demands-return-primary-palliative-care-system-and-continuum-wide-education-using-end-life-nursing-education-consortium-curriculum/
Schenck, A. P., Rokoske, F. S., Durham, D., Cagle, J. G., Hanson, L. C. (2014). Quality measures for hospice and palliative care: Piloting the PEACE measures. Journal of Palliative Medicine. 17(7), 769-775.
Resources to Support Similar Evidence-Based Initiatives
Evidence-Based Cancer Control Programs