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.

56 Background: GBM is a uniformly fatal disease with average survival of < 3 years and universal cognitive problems, making advance care planning paramount. End of life (EOL) patterns of GBM care in the US have not been studied. We examined care in a cohort of GBM and brain tumor (BT) patients as part of a program to provide individual provider feedback about EOL care. Methods: We reviewed the care of all GBM patients over 3 years with a random sample of 100, and a 5-yr subset of 45 who received their care at Gilchrist Hospice (GH), our largest provider. We queried EPIC EMR for markers of quality. We also reviewed all 452 advanced cancer pts of the Sidney Kimmel Comprehensive Cancer Center (SKCCC) referred to GH from 7/1/13 to 3/31/15 to find the median length of stay (LOS) and %LOS < 7 days for each division and each physician; 29 BT patients (most GBM) are included. Results: Few patients had documented Advance Directives or code status. Of the 100 pts, 37% were hospitalized in the last 4 weeks of life, and 17% received chemotherapy. Hospice referral and use was 76%. Of those in GH, 64% died at home with hospice and 20% died in inpatient hospice. Variability among physicians in hospice LOS was high (cv = 124.30%) ranging from 6 to 158 days with a median of 33.5 days, exceeding national averages, and 3 of 6 practitioners were below average LOS. Conclusions: In this snapshot of GBM EOL care in the US, improvements can be made in the use of advance care planning, code status, chemotherapy near death, and hospitalization rates. Hospice LOS is above national averages but varies by physician. [Table: see text]

e20542 Background: Advanced cancer patients develop severe physical and psychosocial symptom clusters. There is limited data on the impact of an outpatient interdisciplinary team (IDT) consultation lead by palliative care specialists on symptom clusters. Cluster composition and consistence, response rate and predictors of response are unknown. Methods: 914 consecutive patients with advanced cancer presenting in the OSC from Jan 2003 to Oct 2008 with a complete Edmonton symptom assessment scale at the initial and follow-up visit (median 14 days, range 1–4 wks), and CAGE status (alcohol screening) were reviewed. Wilcoxon ranked sign test was used to determine whether symptoms changed over time. Principal components factor analysis with varimax rotation was used to determine clusters of symptoms at baseline and at follow-up. The number of factors calculated was determined based upon the number of eigen values that were greater than one. Results: Median age was 59 yrs, female were 46%. The most common primary cancer was Lung (19%). Baseline and follow-up visit scores (mean, SD) were: fatigue 5.7 (2.1) and 5.2 (2.2, p<0.0001), pain 4.9 (2.6) and 4.1 (2.6 p<0.0001), nausea 1.8 (2.4) and 1.7 (2.3, p=0.1), depression 2.6 (2.5) and 2.2(2.4,p<0.0001), anxiety 2.9 (2.7) and 2.4 (2.4, p<0.0001), drowsiness 3.2 (2.8) and 3.2 (2.6, p=0.7), dyspnea 2.6 (2.7) and 2.4 (2.6), p=0.0027), appetite 4.2(2.7) and 3.9 (2.7, p<0.0001), sleep 4.2 (2.6) and 3.8 (2.6, p<0.0001) and well being 4.3 (2.5) and 3.9 (2.3, p<0.0001). During the follow- up the symptom clusters varied from a 3 factor to a 2 factor model, reflecting the impact of the IDT on symptom burden. CAGE positive and CAGE negative patients had a significantly different symptom cluster model. Conclusions: Cluster composition differs when patients are assessed and managed by an IDT and among patients who screen positive for alcoholism. [Table: see text] No significant financial relationships to disclose.

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202 Background: End of life care for glioblastoma patients has not been studied in the United States. We studied 100 patients with GBM to examine use of advance directives (AD), symptom assessments, hospitalizations, chemotherapy use, and hospice use. Methods: A single center retrospective cohort study of adult patients actively treated for GBM at Johns Hopkins Hospital from 2009-2014. 100 patients were randomly chosen from the group of 317 GBM patients. Information included documentation of AD, code status, hospitalizations, chemotherapy use, code status and symptom assessments. A secondary analysis of all JHH GBM patients who received hospice care at Gilchrist Hospice during this time period was analyzed using the electronic medical record and hospice records to evaluate date of referral to hospice, length of stay in hospice and location of death. Results: Of 100 patients, 76 were referred to hospice. Only 40% of individuals had documentation of code status and only 17% had any documentation of ADs in the outpatient chart. Formal symptom, spiritual, or psychosocial assessments were seldom documented in the outpatient record. 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 Hospice patients, the median length of stay in hospice was 21 days and 64% of these patients died in their residence with hospice services. Conclusions: More formalized palliative care utilization and structure could improve end of life care for GBM patients, especially in the use of ADs; formal symptom, spiritual, and psychosocial assessments; and earlier use of hospice to prevent end of life hospitalizations.