A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire. Out of these 407 individuals, 301 (74% of those who agreed to receive a questionnaire and 37% of the 815 contacted) returned a completed questionnaire. A single reminder letter was sent to non-responders. It was found that the majority of those who received help from district nurses or practice nurses (90%) said that they were excellent or good. However, nearly 40% of respondents reported needing more nursing help. More help was also needed from social care services. For 103 out of the 301 respondents, it was known that the deceased person wanted to die at home; only 44 did so. Only one-fifth of respondents had the opportunity to talk to someone from health and social services after their bereavement; a large majority (four-fifths) found this helpful. One-tenth of respondents reported untreated pain at home; however, there was evidence for an increasing proportion of those treated having received good pain relief. Although there are high levels of satisfaction with care and services received by Powys residents, deficits exist in relation to: symptom control, nursing help, assistance from social services with transport and bathing, communication, and bereavement support.

Glioblastoma (GBM) is a universally fatal disease, complicated by significant cognitive and physical disabilities, inherent to the disease course. The purpose of this study was to retrospectively analyze end-of-life care for GBM patients at an academic center and compare utilization of these services to national quality of care guidelines, with the goal of identifying opportunities to improve end-of-life care. Single center retrospective cohort study of GBM patients at Johns Hopkins Hospital (JHH) between 2009 and 2014, using electronic medical records and hospice records. Comprehensive medical record review of 100 randomly selected patients with GBM, who were actively treated at JHH. Secondary analysis of all JHH GBM patients (n = 45) who received hospice care at Gilchrist Services, our largest provider, during this time period. Of 100 patients, 76 were referred to hospice. Despite the poor survival and changes in mental capacity associated with this disease, only 40% of individuals had documentation of code status and only 17% had any documentation of advance directives (ADs). None had documentation by a health care provider of a formal symptom, psychosocial, or spiritual assessment at greater than 50% of clinic visits. Only 17% used chemotherapy in their last month of life. 37% were hospitalized in the last month of life for an average of 9 days. Of the Gilchrist Services patients, the median length of stay in hospice was 21 days and 64% of these patients died in their residence with hospice services. Documentation of palliative care and end-of-life measures could improve quality of care for GBM patients, especially in the use of ADs, symptom, spiritual, and psychosocial assessments, with earlier use of hospice to prevent end-of-life hospitalizations.

Purpose: The benefits of hospice for patients with end-stage disease are well established. Although hospice use is increasing, a growing number of patients are enrolled for ≤ 7 days, a marker of poor quality of care and patient and family dissatisfaction. In this study, we examined variations in referrals among individuals and groups of physicians to assess a potential source of suboptimal hospice use. Methods: We conducted a retrospective chart review of 452 patients with advanced cancer referred to hospice from a comprehensive cancer center. We analyzed patient length of service (LOS) under hospice care, looking specifically at median LOS and percent of short enrollments (%LOS ≤ 7), to examine the variation between individual oncologists and divisions of oncologists. Results: Of 394 successfully referred patients, median LOS was 14.5 days and %LOS ≤ 7 was 32.5%, consistent with national data. There was significant interdivisional variation in LOS, both by overall distribution and %LOS ≤ 7 ( P < .01). In addition, there was dramatic variation in median LOS by individual physician (range, 4 to 88 days for physicians with five or more patients), indicating differences in hospice referral practices between providers (coefficient of variation > 125%). As one example, median LOS of physicians in the Division of Thoracic Malignancies varied from 4 to 33 days, despite similarities in patient population. Conclusion: Nearly one in three patients with cancer who used hospice had LOS ≤ 7 days, a marker of poor quality. There was significant LOS variability among different divisions and different individual physicians, suggesting a need for increased education and training to meet recommended guidelines.