Quality end-of-life care in long-term care facilities:Service providers' perspective

The goal of this project was to provide guidance on what constitutes quality end-of-life care in long-term care (LTC) facilities. Seventy-nine direct care providers from six LTC facilities participated in 12 focus groups. The focus group discussions examined what made the difference between a "good" death and a "bad" death, and what changes in LTC would improve the care of dying residents. Analyses of the focus group data revealed six themes that contribute to quality end-of-life care in LTC facilities: responding to resident needs, creating a homelike environment, supports for families, providing quality care processes, recognizing death as a significant event, and having sufficient institutional resources. These findings challenge policy makers and providers to consider how to normalize life and death in LTC facilities.

The last word:Family members' descriptions of end-of-life care in long-term care facilities

A postal survey was used to collect data from family members of deceased residents of six long-term care (LTC) facilities in order to explore end-of-life (EOL) care using the Family Perception of Care Scale. This article reports on the results of thematic analysis of family member comments provided while completing the survey. Family comments fell into two themes: 1) appreciation for care and 2) concerns with care. The appreciation for care theme included the following subthemes: psychosocial support, family care, and spiritual care. The concerns with care theme included the subthemes: physical care, staffing levels, staff knowledge, physician availability, communication, and physical environment. This study identified the need for improvement in EOL care skills among LTC staff and attending physicians. As such, there is a need to implement continuing education to address these issues. © 2006 Centre for Bioethics, IRCM.

Family perceptions of end-of-life care in long-term care facilities

The study examined the utility of the Family Perception of Care Scale (FPCS), which consists of four subscales: resident care, family support, communication, and rooming. This instrument was developed for the purposes of this study. Overall, family members were satisfied with end-of-life care. Satisfaction did not have a statistically significant relationship to family and resident characteristics. Survey questions with the highest number of low satisfaction ratings included staffing levels, updating families and involving them in care planning, and decision making. Family members considered pain control an important priority, followed by comfort care that included caring for a family member with dignity and sensitivity. Family members also valued it when staff were able to inform them that the death of their family member was near. Place of death was significantly associated with satisfaction, family members being more satisfied with end-of-life care when their family member died in the LTC facility as opposed to in hospital.

Long-term health-related quality of life of prostate cancer survivors varies by primary treatment. Results from the PiCTure (Prostate Cancer Treatment, your experience) study

PURPOSE: Men are living longer with prostate cancer. In a two-country study, we investigated the health-related quality of life (HRQoL) of prostate cancer survivors up to 18 years post-diagnosis.

METHODS: Postal questionnaires were administered in 2012 to 6559 prostate cancer (ICD10 C61) survivors 2-18 years post-diagnosis, identified through population-based cancer registries in Ireland. HRQoL was measured using QLQ-C30 and QLQ-PR25. HRQoL, functional and symptom scores were compared by primary treatment(s) using multiple linear regression.

RESULTS: Fifty-four percent responded (n = 3348). After controlling for socio-demographic and clinical factors, global HRQoL varied significantly by primary treatment (p < 0.001); compared to radical prostatectomy (RP), survivors who received androgen deprivation therapy alone (ADT; p < 0.001) or external beam radiotherapy (EBRT) without concurrent ADT (p = 0.001) had significantly lower global HRQoL. The global HRQoL of men who received brachytherapy (p = 0.157), EBRT with concurrent ADT (p = 0.940) or active surveillance/watchful waiting (p = 0.388) was not significantly different from men treated with RP. There were statistically and clinically significant differences in general (fatigue, pain, dyspnoea, appetite loss, constipation, diarrhoea, financial difficulties) and disease-specific symptoms (sexual, urinary, bowel, ADT) by primary treatment. Fatigue and insomnia scores were high for survivors in all treatment groups.

CONCLUSIONS: Prostate cancer survivors' long-term HRQoL varied with primary treatment.

IMPLICATIONS OF CANCER SURVIVORS: Population-based information regarding statistically and clinically significant treatment effects on long-term global HRQoL, symptom burden and functionality should be provided during treatment decision-making. Screening for symptoms and utilising interventions during long-term follow-up may improve survivors' HRQoL.