John Cagle, PhD, MSW 2016 General Assembly of the Social Work Hospice & Palliative Care Network
The Issue 85-100% of pain can be treated HOWEVER -- seriously ill patients still suffer with inadequate pain management Patient/family concerns identified as the most significant barrier to pain management: Families unable to implement/maintain treatments Families do not want the treatments
Eight Major Concerns 8 patient/family concerns about pain and pain management in palliative care: 1. Addiction 2. Tolerance 3. Side effects 4. Stoicism 5. Stigma 6. Not wanting to be a bother 7. Overdose 8. Fatalism
Other Complicating Factors Gaps in Communication Challenges with Adherence Cultural issues
Minorities Regarding pain and pain management, African American and Hispanic individuals tend to report: More concerns Higher levels of concern
Our Role Major barriers to pain management in palliative care are psychosocial and thus within the wheelhouse of social work!
The EMPOWER Approach EMPOWER (Effective Management of Pain: Overcoming Worries to Enable Relief) program Educate the entire hospice team Assess concerns: Early (i.e., at admission) Cover all 8 barriers Both patient AND caregiver
The EMPOWER Approach (cont.) Tailored Education EMPOWER Brochure Address concerns identified during assessment Discuss adherence Follow-up Add to care plan Revisit as needed
Changing Behavior When introducing a new medication regimen, we are asking patients/families to alter their behavior and behavioral change is very difficult EMPOWER included tips for improving adherence
Facilitating Adherence Identify responsible person(s) Determine need for reminders Evaluate knowledge/education level Assess current adherence Provide information (e.g., basic pain assessment, dosing)
Is EMPOWER Effective? We tested EMPOWER with a small, randomized trial of hospice users: 55 in the intervention group 71 in the control group
EMPOWER Outcomes Participants in the intervention group had: Better knowledge (p<.001) Fewer concerns (p=.001) Lower levels of patient pain (p=.001) EMPOWER appeared especially beneficial for African American families at: Reducing stigma Increasing self-efficacy
Caregiver Concerns at 2 Weeks Level of concern for 8 barriers to pain management *p<0.05; **p<0.001 ; ***p<. ; Note: Ratings ranged from = Not concerned at all to = Very concerned. Means are unadjusted. Sample size at 2 weeks post-admission: Intervention N=55; Control N=71.
Caregiver Concerns at 3 Months Level of concern for 8 barriers to pain management *p<0.05; **p<0.001 ; ***p<. ; Note: Ratings ranged from = Not concerned at all to = Very concerned. Means are unadjusted. Sample size at 3 months post-admission: Intervention N=18; Control N=26.
Patient pain Patient s pain level over the past week P <. 5; Subjects response to the question: Over the past week, how much pain do you feel [the patient] had? =No pain; 10=A great deal of pain. Sample size at 2 weeks post-admission: Intervention N=55; Control N=71. Sample size at 3 months post intervention: Intervention N=18; Control N=26.
Take Home Messages. Pain treatments are useless if people don t feel comfortable enough to give/take them 2. Concerns about pain medications are a major impediment to pain management 3. EMPOWER is a promising, evidence supported approach to addressing common barriers to pain management 4. Rely on the strengths of your interdisciplinary team
Acknowledgements Agency for Healthcare Research and Quality (AHRQ), 1-R03-HS019068 Cagle, J. G., Zimmerman, S., Cohen, L., Porter, L., Hanson, L. & Reed, D. (2015). EMPOWER: An intervention to address barriers to pain management in hospice. Journal of Pain and Symptom Management, 49, 1-12. doi: 10.1016/j.jpainsymman.2014.05.007 Cagle, J. G. (2016). The management of patient pain as a potential source of family conflict in hospice. In K. J. Doka, & A. S. Tucci (Eds.) Managing Conflict, Finding Meaning Supporting Families at Life s End. Washington DC: Hospice Foundation of America. Hong, S., Cagle, J. G., Van Dussen, D. J., Carrion, I. V., & Culler, K. L. (in press). Willingness to use pain medicine to treat pain. Pain Medicine. doi: 10.1111/pme.12854 Carrion, I. V., Cagle, J. G., Van Dussen, D. J., Culler, K. L., & Hong, S. (2015). Knowledge about hospice care and beliefs about pain management: Exploring differences between Hispanics and non-hispanics. American Journal of Hospice and Palliative Medicine, 32, 647-653. doi: 10.1177/1049909114536023 Cagle J. G., & Altilio, T. (2011). The social work role in pain and symptom management. In T. Altilio & S. OtisGreen (Eds.), Oxford textbook of palliative social work. New York: Oxford University Press. Bergman-Evans, B. (2006). AIDES to improving medication adherence in older adults. Geriatric Nursing, 27, 174182. And especially all of the patients, families and providers who participated in this research!
Thank you!!!