PERCEIVED BARRIERS TO EFFECTIVE SYMPTOM MANAGEMENT IN HOSPICE
Daniel C. Johnson MD, Cordt T. Kassner PhD, Janet Houser PhD, Jean S. Kutner MD, MSPH. University of Colorado Denver, Denver, Colorado.
BACKGROUND: Dying patients frequently suffer from pain and non-pain symptoms, even in hospice - a setting specializing in end-of-life care. While for some symptoms this unrelieved burden may reflect a lack of effective treatments, the barriers to effective symptom management in hospice remain unclear.
METHODS: We surveyed nurses from hospices affiliated with the Population-based Palliative Care Research Network (PoPCRN), a national research network of hospice organizations. We asked each participant to specify barriers to the five symptoms they found most difficult to manage. Descriptive statistics, non-parametric techniques and factor analyses were used to describe patterns of barriers among common symptoms.
RESULTS: 867/1710 (51%) nurses from 67 hospices in 25 US States returned surveys. Mean nursing and hospice experience were 10.5 years [range 0.5-50 years] and 4.4 years [range 0.1-25 years] respectively. Most nurses (80%) provided care in the home setting. The symptoms that were most difficult to manage were agitation (45%), pain (40%), dyspnea (34%), confusion (33%) and pressure ulcers (27%). Less than half (43%) of respondents felt often or almost always successful in relieving distress from their selected symptoms. Nurses reported success in relieving pain (96%), constipation (85%) and nausea (84%), but were unsuccessful in relieving weakness (7%), fatigue (11%) and anorexia (11%). The most common perceived barriers to effective symptom management were the inability of care providers to implement or maintain recommended treatments (38%), patients or families not wanting recommended treatments (38%), competing demands from other distressing symptoms (37%), and acceptance of the symptom as a consequence of other treatments (33%). Through factor analysis, the 15 most frequently reported symptoms were classified into 3 groups based on patterns of barriers: symptoms with well-defined treatments and high rates of perceived success such as pain, dyspnea, and nausea; symptoms with less clear treatments and low rates of success such as weakness, fatigue, and anorexia; and two psychological symptoms - depression and irritability - that demonstrated a broader spectrum of contributing barriers.
CONCLUSION: These hospice nurses identified a variety of complex barriers contributing to unrelieved symptom burden. Potential interventions should take into account the differing patterns of barriers to effectively treat these frequent and distressing symptoms.
PUBLISHED: Johnson, DC, CT Kassner, J Hauser, JS Kutner. 2005. "Barriers to Effective Symptom Management in Hospice" Journal of Pain and Symptom Management, 29(1):69-79.