Rationale/Background Pain is a common symptom of EOL care, and interdisciplinary professionals who practice in hospice and EOL are considered specialists in managing pain and the many other potential physical, emotional, and spiritual issues that may arise for patients at EOL. However, while hospice professionals frequently acknowledge the need for an interdisciplinary approach to pain and symptom management, the current Medicare-mandated spiritual screening and assessment process does not account for more timely assessment in patients with unmanaged pain. The delay between the RN spiritual screening and the more comprehensive spiritual assessment by an interdisciplinary team member could delay the identification of spiritual distress and the need for psychosocial interventions by up to 3 days. Or if a patient or family declines a comprehensive spiritual assessment during the initial RN screening, spiritual distress may go unidentified all together at the detriment of a more holistic and comprehensive pain management approach.
Current evidence supports both an increased prevalence of and a positive relationship between increased physical pain and spiritual distress for those with advanced cancer and/or receiving palliative care services. In cancer patients in the last days or weeks of life, up to 94% of patients were found to experience pain at some point (Renz et al., 2018). Other authors confirmed this high prevalence of pain in over 60% of patients on hospice (Hunnicutt, Tjia, & Lapane, 2017; Teno, Freedman, Kasper, Gozalo, & Mor, 2015). In multiple studies sampling from the cancer population, spiritual distress was reported or identified in 23-44% of patients (Caldeira et al., 2014; Caldeira, Timmins, de Carvalho, & Vieira, 2016, 2017; Hui et al., 2011; Schultz, Meged-Book, Mashiach, & Bar-Sela, 2017). In multiple studies involving patients with advanced cancer, pain has been associated with increased psychological and/or spiritual distress (Delgado-Guay et al., 2016; Henne, Morrissey, & Conlon, 2015; Krok, Baker, & McMillan, 2013). While the cancer or advanced illness population may be similar to the EOL/hospice population, the specific urgency for symptom management and psychosocial support for those at EOL on hospice are unique, and the timeliness of pain management and spiritual assessment is more pressing. Additionally, spiritual distress still remains a relatively understudied area, and, in anecdotal experience, assessment and management of physical symptoms often take precedence over interventions for spiritual distress. Further research is needed to determine the relationships between physical pain, spiritual distress, and factors such as age, gender, and religious affiliation/spiritual practice specific to EOL patients assigned to hospice care.
Methods This quantitative study will utilize pre-existing data to examine the relationship between physical pain, spiritual distress, and relevant demographic factors in a group of terminally-ill adults (age 18 and over) within 5 days of admission to hospice. Due to the sensitive nature of the EOL experience for patients and families as well as the logistic and ethical challenges of collecting data directly from this population, this research design aims to utilize pre-collected assessment data regarding these concepts without instigating the burden of time and additional verbal/physical engagement on the patient and family. Data from the proposed study will serve as a basis for future investigation of more holistic symptom management in this population.
Results Pending
Implications. The multidisciplinary and holistic nature of hospice EOL care lends itself well to questions about the interplay between physical, psychological, and spiritual symptoms and the roles multidisciplinary providers play in managing those symptoms. Therefore, data from the proposed study to explore the relationships between physical pain, spiritual distress, and relevant demographic factors in a group of terminally-ill adults (age 18 and over) within 5 days of admission to hospice will fill current gaps in the knowledge base regarding this area. Findings from this study could ultimately lead to expanded and much-needed multidisciplinary qualitative and quantitative research and changes in practice to ensure the best possible EOL experience for adults at EOL and their caregivers.
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