Pain in care home residents with dementia: an exploration of frequency, prescribing and relatives' perspectives

Objectives: This study aims to determine pain frequency amongst care home residents with dementia, to investigate variables associated with pain, to explore analgesic use among residents and to seek residents' relatives' views on provision of care and management of pain by the care home. Methods: Structured face-to-face interviews were conducted with residents, nursing staff and relatives from nine dementia care homes in Northern Ireland, between May 2010 and March 2012. Demographic information was collected from participants, neuropsychiatric tests were used to assess residents' cognitive functioning, medication use was determined from care home records and residents' pain was assessed using a verbal descriptor scale. Relatives' views were sought on care provision and management of pain. Results: Forty-two residents, 16 nurses/care assistants and 35 relatives participated; the participation rate of residents was low (27.6%). Most residents were suffering moderate-severe dementia, and some residents (26.2%) were unable to provide a self-report of pain. A significantly higher proportion of relatives (57.1%) deemed residents to be experiencing pain at the time of the interview, compared with residents (23.8%, p = 0.005) and nurses/care assistants (42.9%, p = 0.035). Most residents (88.1%) were prescribed with analgesia; non-opioid analgesics were most commonly prescribed. High proportions of residents were prescribed with psychoactive medications. Antipsychotic drug use was associated with presence of pain (p = 0.046). Conclusions: This study has reinforced the challenge of assessing and managing pain in this resident population and highlighted issues to be addressed by long-term care providers and clinicians. Participation of people with dementia, and their families, in healthcare research needs to be improved.

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis

Objective: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients’ homes.Design: Pooled analysis of a retrospective cohort study.Setting: Ontario, Canada.Participants: 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed).Intervention: The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams’ role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day.Main outcome measures: Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital.Results: In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52).Conclusions: Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life.

A Pilot Evaluation of the Palliative Performance Scale in Long Term Care: Tips for Success

Aims: Palliative care in long-term care (LTC) homes is an area of growing concern. Little work has been done to explore innovative ways to identify and care for residents who become palliative. The purpose of this intervention study was to evaluate the implementation of the Palliative Performance Scale (PPS) in LTC. Specifically we explored staff perceptions about implementing the PPS and how it cued staff to initiate palliative care discussion with residents and family when a resident’s health declined.

Methods: This study utilized a qualitative descriptive design that included data from four separate sources: journals of three ‘champions’ who were responsible for leading the implementation of the PPS; staff evaluations of three educational training sessions; minutes from meetings; and 11 interviews from key staff who were involved in the implementation process. Data were analyzed using thematic content analysis.

Results: Staff generally felt positively about using the PPS in LTC and stated that it increased awareness of palliative care and helped identify those residents who were nearing the end of life. There were some barriers to implementing it, such as staff resistance and lack of time to complete it. The importance of having a designated ‘champion’ and effective interdisciplinary communication in addition to widespread training, were identified as successful strategies to facilitate the implementation process.

Conclusion: These study findings support the use of the PPS in LTC and offer some perspective about ways to implement it successfully. Future work is needed to evaluate the PPS in LTC using more rigorous designs.

Comfort Care Rounds: A Staff Capacity-Building Initiative in Long-Term Care Homes

This article reports a pilot evaluation of Comfort Care Rounds (CCRs)-a strategy for addressing long-term care home staff's palliative and end-of-life care educational and support needs. Using a qualitative descriptive design, semistructured individual and focus group interviews were conducted to understand staff members' perspectives and feedback on the implementation and application of CCRs. Study participants identified that effective advertising, interest, and assigning staff to attend CCRs facilitated their participation. The key barriers to their attendance included difficulty in balancing heavy workloads and scheduling logistics. Interprofessional team member representation was sought but was not consistent. Study participants recognized the benefits of attending; however, they provided feedback on how the scheduling, content, and focus could be improved. Overall, study participants found CCRs to be beneficial to their palliative and end-of-life care knowledge, practice, and confidence. However, they identified barriers and recommendations, which warrant ongoing evaluation.

Nurses' experiences providing palliative care to individuals living in rural communities aspects of the physical residential setting

Introduction: Efforts are needed to improve palliative care in rural communities, given the unique characteristics and inherent challenges with respect to working within the physical aspects of residential settings. Nurses who work in rural communities play a key role in the delivery of palliative care services. Hence, the purpose of this study was to explore nurses’ experiences of providing palliative care in rural communities, with a particular focus on the impact of the physical residential setting.

Methods: This study was grounded in a qualitative approach utilizing an exploratory descriptive design. Individual telephone interviews were conducted with 21 community nurses. Data were analyzed by thematic content analysis.

Results: Nurses described the characteristics of working in a rural community and how it influences their perception of their role, highlighting the strong sense of community that exists but how system changes over the past decade have changed the way they provide care. They also described the key role that they play, which was often termed a ‘jack of all trades’, but focused on providing emotional, physical, and spiritual care while trying to manage many challenges related to transitioning and working with other healthcare providers. Finally, nurses described how the challenges of working within the physical constraints of a rural residential setting impeded their care provision to clients who are dying in the community, specifically related to the long distances that they travel while dealing with bad weather.