Palliative care interventions and end-of-life care outcomes for hepatocellular patients (pts) at two Veterans Affairs (VA) medical centers.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 164-164
Author(s):  
Zhen Wang ◽  
Sarah Lee ◽  
Sejal Kothadia ◽  
Yucai Wang ◽  
Victor Tsu-Shih Chang ◽  
...  
Keyword(s):  
Palliative Care ◽  
Symptom Management ◽  
Symptom Assessment ◽  
Place Of Death ◽  
Family Meeting ◽  
Early Referral ◽  
Medical Centers ◽  
Family Meetings ◽  
Care Outcomes ◽  
Eol Care

164 Background: Palliative care interventions and their effect on EOL outcomes for liver cancer pts have not been described. We investigated the association between palliative care intervention and EOL care outcomes. Methods: We reviewed the charts of pts with hepatocellular carcinoma and who were seen by palliative care at 2 VA medical centers from 2006 to 2012. We investigated the association between EOL outcomes (number of ER visits, ICU visits, chemotherapy, place of death, number of hospitalizations during their last 30 days), and interventions such as early referral (within 30 days of diagnosis), defined goals of care, holding a family meeting, and symptom assessment and management. The protocol was reviewed by the IRB of both VAs and analyses were done with SAS Studio v3.4. Results: 82 charts were reviewed (30 from EOVA and 52 from BVA). All Pts were men; 30 (39%) were white and 47(61%) African American. Interval from diagnosis to palliative care consult was 68 days (median). 72 (90%) pts were not aware of their diagnosis. 48 (65%) were not aware of prognosis. 65 (88%) had decision making capacity. 32 (39%) pts were DNR/DNI. 60 (86%) pts chose symptom management and 10 (14%) life prolongation. 47 pts (50%) had family meeting. In the last month, 35 pts (48%) had ER visit. 9 pts (12%) had ICU visits, 4 pts (5%) had chemotherapy and 48 pts (71%) had at least 1 hospitalization. 68 (85%) underwent symptom assessment. Most frequently treated symptoms were pain (78%), nausea (27%), constipation (46%), dyspnea (34%). Significant associations were found for early referral and ER admissions (OR = 3.2, p = 0.0178), family meeting and site of death (OR = 0.136 p = 0.0037), family meeting and number of hospitalizations (OR = 0.2652, p = 0.0169). Pts choosing symptom management and who had family meetings associated with hospice/home as place of death (chisq = 5.7368, p = 0.016). Knowledge of prognosis was not associated with site of death. Conclusions: In this population, many palliative care interventions were performed. Early referral, family meetings were significantly associated with site of death, ER admissions, and number of hospitalizations. These results should be replicated in larger studies.

Palliative care interventions and EOL care outcomes for hepatocellular patients (pts) at 2 VA medical centers.

2016 ◽  
Vol 34 (15_suppl) ◽  
pp. e21514-e21514
Author(s):  
Zhen Wang ◽  
Sarah Lee ◽  
Sejal Kothadia ◽  
Yucai Wang ◽  
Victor Tsu-Shih Chang ◽  
...  
Keyword(s):  
Palliative Care ◽  
Medical Centers ◽  
Care Outcomes ◽  
Eol Care

scholarly journals Prevalence and severity of sleep difficulty in patients with a CNS cancer receiving palliative care in Australia

2019 ◽  
Vol 6 (6) ◽  
pp. 499-507 ◽  
Author(s):  
Megan S Jeon ◽  
Haryana M Dhillon ◽  
Joseph Descallar ◽  
Lawrence Lam ◽  
Samuel Allingham ◽  
...  
Keyword(s):  
Palliative Care ◽  
Psychological Distress ◽  
Multilevel Models ◽  
Point Of Care ◽  
Clinical Status ◽  
Symptom Assessment ◽  
Sleep Difficulty ◽  
Patient Reported ◽  
Care Outcomes ◽  
Sleep Difficulties

Abstract Background The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty. Methods A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty. Results Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients’ clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care. Conclusions Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.

scholarly journals Comparison of Palliative Care Models in Idiopathic Pulmonary Fibrosis

2021 ◽  
Vol 11 (19) ◽  
pp. 9028
Author(s):  
Sarah Younus ◽  
Jeffrey A. Bakal ◽  
Janice Richman-Eisenstat ◽  
Ghadah Alrehaili ◽  
Sharina Aldhaheri ◽  
...  
Keyword(s):  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Symptom Management ◽  
Care Delivery ◽  
Referral Criteria ◽  
Location Of Death ◽  
Specialist Referral ◽  
Care Models ◽  
Eol Care

Introduction: Palliative care (PC) is recommended in idiopathic pulmonary fibrosis (IPF) patients but poorly implemented. Integration of PC into routine management by pulmonologists may improve overall and end-of-life (EOL) care, but the optimal model of PC delivery is unknown. Objective: To describe three PC care delivery models and their impact on EOL; the Multidisciplinary Collaborative ILD clinic, Edmonton, Canada (EC) and the Bristol ILD Service, UK (BC) that provide primary level PC; and the Queen’s University ILD Clinic, Kingston, Canada (QC), which refers IPF patients to a specialist PC Clinic using specific referral criteria. Methods: A multicenter retrospective observational study of IPF patients receiving care in the identified clinics (2012–2018) was designed. Demographics; PC delivery, including symptom management; advance care planning (ACP); and location of death data were examined. Results: 298 IPF patients were included (EC 95, BC 84, and QC 119). Median age was 71 years with 74% males. Overall, 63% (188) patients received PC. Primary PC approach in EC and BC led to more patients receiving PC (98% EC, 94% BC and 13% QC (p < 0.001/<0.001)) with earlier initiation compared to QC. Associated higher rates of non-pharmacologic dyspnea management [98% EC, 94% BC, and 2% QC (p < 0.001/<0.001); opioids (45% EC and BC, and 23% QC (p < 0.001/<0.001)); and ACP (100% EC and BC, and 13% QC patients (p < 0.001/<0.001))] were observed. Median follow up (IQR) was 16 months (5–28) with 122 deaths (41%). Primary PC model in EC and BC decedents was associated with more PC delivery (91% EC, 92% BC and 19% QC (p < 0.001)) with more symptoms management, oxygen, and opiate use than QC (p < 0.001; p = 0.04; p = 0.01). EOL discussions occurred in 73% EC, 63% BC, and 4% QC decedents (p = 0.001). Fifty-nine% (57) died at home or hospice and 38% (36) in hospitals. Concordance rate between preferred and actual location of death was 58% in EC (0.29 (−0.02–0.51)) and 37% in BC models (−0.11 (−0.20–0.15)). Conclusions: Primary PC approach for IPF is feasible in ILD clinics with concurrent disease management and can improve access to symptom management, ACP, PC and EOL care. Reliance on PC specialist referral for PC initiation outside of the ILD clinic can result in delayed care.

Point-of-care clinical decision support for cancer symptom management: Results of a group randomized trial.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 1-1 ◽  
Author(s):  
Mary E. Cooley ◽  
Traci Blonquist ◽  
Paul Catalano ◽  
David Lobach ◽  
Ilana Braun ◽  
...  
Keyword(s):  
Palliative Care ◽  
Decision Support ◽  
Clinical Decision Support ◽  
Symptom Management ◽  
Point Of Care ◽  
Symptom Assessment ◽  
Well Being ◽  
Clinical Decision ◽  
Group Randomized Trial ◽  
Significant Difference

1 Background: Integration of palliative care into oncology is recommended for quality care. Clinicians may benefit from assistance in assessing and managing multiple symptoms. Palliative care clinicians have the expertise but may not be available or are not consulted early in the course of a patient’s disease. Clinical decision support (CDS) offers an innovative way to deliver symptom management and trigger palliative care referrals at the point-of-care. Methods: Twenty clinicians and their patients were randomized to usual care (UC) or CDS using the symptom assessment and management intervention (SAMI), which provided tailored suggestions for pain, fatigue, depression, anxiety and/or dyspnea. One-hundred seventy-nine patients completed a Web-based symptom assessment prior to each visit for 6 months. A tailored report provided a longitudinal symptom report and suggestions for management were provided to clinicians in the SAMI arm prior to the visit. Standardized questionnaires were administered to patients at baseline, 2, 4 and 6 months later to measure communication about symptoms and health-related quality of life (HR-QOL). The treatment outcome index (TOI) was the primary outcome for HR-QOL. Management of the target symptoms was assessed through chart review. Linear mixed models and logistic regression were used for analyses. Results: Patient characteristics were: mean age of 63 years, 58% female, 88% white, and 32% had < HS education. No differences were noted in communication between patients and their clinicians. Significant differences were noted in physical well-being (p = 0.007, 0.08 adjusted for baseline) and a clinically significant difference in the TOI (62 vs. 68) at 4 months in SAMI as compared to UC. The odds of managing depression (1.6, 90% CI, 1.0-2.5), anxiety (1.7, 90% CI, 1.0-3.0) and fatigue (1.6, 90% CI, 1.1-2.5) were higher in SAMI as compared to UC. The odds of palliative care consults for pain (3.2, 90% CI, 0.7-13.4) appear to be higher in SAMI as compared to UC. Conclusions: Enhanced HR-QOL was noted among patients in the SAMI arm at 4 months. SAMI increased management of depression, fatigue and anxiety and appeared to increase palliative care consults for pain. Clinical trial information: NCT00852462.

What is the evidence for conducting palliative care family meetings? A systematic review

2016 ◽  
Vol 31 (3) ◽  
pp. 197-211 ◽  
Author(s):  
Philippa J Cahill ◽  
Elizabeth A Lobb ◽  
Christine Sanderson ◽  
Jane L Phillips
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Cochrane Collaboration ◽  
Inpatient Setting ◽  
Family Meeting ◽  
Family Meetings ◽  
Palliative Care Setting ◽  
Care Family ◽  
Support Family ◽  
Palliative Patients

Background: Structured family meeting procedures and guidelines suggest that these forums enhance family–patient–team communication in the palliative care inpatient setting. However, the vulnerability of palliative patients and the resources required to implement family meetings in accordance with recommended guidelines make better understanding about the effectiveness of this type of intervention an important priority. Aim and design: This systematic review examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families. The review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. Data sources: Six medical and psychosocial databases and “CareSearch,” a palliative care–specific database, were used to identify studies reporting empirical data, published in English in peer-reviewed journals from 1980 to March 2015. Book chapters, expert opinion, and gray literature were excluded. The Cochrane Collaboration Tool assessed risk of bias. Results: Of the 5051 articles identified, 13 met the inclusion criteria: 10 quantitative and 3 qualitative studies. There was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures. Conclusion: Despite the existence of consensus-based family meeting guidelines, there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice.

scholarly journals Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review

2021 ◽  
pp. 1-13
Author(s):  
Shih-Chun Lin ◽  
Mei-Chih Huang ◽  
Deni Yasmara ◽  
Huey-Lan Wuu
Keyword(s):  
Palliative Care ◽  
Young Adults ◽  
Length Of Stay ◽  
End Of Life ◽  
Adolescents And Young Adults ◽  
Place Of Death ◽  
Current Evidence ◽  
Cochrane Library ◽  
Medical Setting ◽  
Eol Care

Abstract Objective To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions. Method Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC. Results Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths. Significance of results Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.

Meeting the family: Measuring effectiveness of family meetings in a specialist inpatient palliative care unit

2012 ◽  
Vol 10 (1) ◽  
pp. 43-49 ◽  
Author(s):  
Breffni Hannon ◽  
Valerie O'Reilly ◽  
Kathleen Bennett ◽  
Karen Breen ◽  
Peter G. Lawlor
Keyword(s):  
Palliative Care ◽  
Family Member ◽  
Family Members ◽  
Palliative Care Unit ◽  
World Health ◽  
Healthcare Team ◽  
Care Needs ◽  
Family Meeting ◽  
Family Meetings ◽  
The Family

AbstractObjective:The World Health Organization (WHO) definition of palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness …” recognizes the importance of family members in this setting. In practice, family meetings account for a significant amount of the weekly workload in a specialist inpatient palliative care unit. Despite this, there is little empirical evidence to support the benefits of family meetings from the perspective of family members.Method:A prospective study over 6 months, invited a designated family member to complete a self-report instrument (SRI) and the Family Inventory of Needs (FIN) questionnaire prior to, immediately following, and 48 hours after a planned family meeting attended by several members of the multidisciplinary team.Results:Thirty-one designated family members completed the study. The SRIs completed prior to a family meeting identified particular areas of concern and worry for family members, and also helped to generate an agenda based on the family's particular needs. The pre-meeting FIN identified areas of patient care of greatest importance to each family member, and asked them to rate whether particular care needs were presently met or unmet, in their opinion, by the healthcare team caring for the patient. Following the family meeting, repeat SRIs showed an overall reduction in concerns and increased confidence in dealing with those issues raised. Post-family meeting FIN scores confirmed a greater number of met care needs compared with pre-meeting scores, all of which were sustained over time.Significance of results:This study confirms the value of planned multidisciplinary family meetings for patients in specialist inpatient palliative care units. It identifies the often unmet needs of family members and the sustained benefits associated with formal family meetings.

ESAS (Edmonton Symptom Assessment System) as An Effective Outpatient Serial-Longitudinal Symptom Assessment Tool In Patients with Sickle Cell Disease.

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 3798-3798
Author(s):  
Gabriel Lopez ◽  
Darla K Liles ◽  
Charles L Knupp
Keyword(s):  
Palliative Care ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Symptom Management ◽  
Assessment Tool ◽  
Symptom Assessment ◽  
Assessment System ◽  
Cell Disease ◽  
Edmonton Symptom Assessment System

Abstract Abstract 3798 Purpose: Our goal is to implement an ongoing symptom assessment strategy using a validated palliative care tool in the outpatient management of adult patients with sickle cell disease at a comprehensive sickle cell center. Methods: Sickle cell disease is a chronic lifetime illness with intermittent acute exacerbations to daily symptoms. The extension of palliative care symptom management strategies to patients with sickle cell disease has been proposed. Symptom assessment tools such as the ESAS (Edmonton Symptom Assessment System), validated in the palliative care population, may have a role in sickle cell disease management. Ten symptoms are assessed, with the average 24 hour symptom score reported on a 0 to 10 numerical scale, 10 being the worst possible. In our study, 75 adult patients with sickle cell disease presenting for their outpatient visit at a comprehensive sickle cell center were enrolled; they were asked to complete the ESAS and a survey regarding their opinion of the ESAS at each clinic visit. Results: Study patients were 100% African American, 56% (42/75) female, ages 19–67, with disease types 71% (53/75) HgbSS, 19% (14/75) HgbSC, and 11% (8/75) HgbS/beta thal. At least 49% (37/75) of patients had one follow up visit after enrollment, for a total of 112 clinic visits. On the initial visit, 92% (65/71) agreed or strongly agreed with the statement “the ESAS is easy to complete”; 97% (71/73) reported instructions as clear; 96% (72/75) reported no words were difficult to understand; 83% (59/71) were satisfied or very satisfied with the ESAS as a way to report symptoms; 93% (68/73) would recommend the ESAS to other patients. 62% (45/73) of patients reported the ESAS helped them remember symptoms they were experiencing; 34% (25/73) were encouraged to discuss medical issues more openly with their health care provider. In a comparison of visit 1 (V1) and 2 (V2) in the 37 patient subset with a single follow up visit, 94% (33/35) on V1 and 94% (33/35) on V2 recommended the ESAS to other patients; 78% (28/36) on V1 and 86% (31/36) on V2 were satisfied or very satisfied with the ESAS. Including all 75 patients on their initial visit, the most intense symptoms (≥ 4 on ESAS scale) recorded were pain 4.6 (± 3.1) and sleep 4.1 (±3). In the 37 patient subset with follow up, V1 pain 4.7 (± 2.7) and V1 sleep 3.5 (± 2.5); V2 pain 4.4 (± 3.2) and V2 sleep 4.3 (± 2.6). Conclusion: The ESAS is an acceptable, brief, easy to understand symptom assessment tool which can be integrated into an outpatient sickle cell clinic as part of a serial-longitudinal symptom management strategy. Future studies should include measuring the impact of symptom-directed interventions on self-reported symptoms. Disclosures: No relevant conflicts of interest to declare.

Conducting family meetings in palliative care: Themes, techniques, and preliminary evaluation of a communication skills module

2009 ◽  
Vol 7 (2) ◽  
pp. 171-179 ◽  
Author(s):  
Jennifer A. Gueguen ◽  
Carma L. Bylund ◽  
Richard F. Brown ◽  
Tomer T. Levin ◽  
David W. Kissane
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Communication Skills ◽  
Health Care Professionals ◽  
Self Efficacy ◽  
Skills Training ◽  
Communication Skills Training ◽  
Training Module ◽  
Family Meeting ◽  
Family Meetings

ABSTRACTObjective:To develop a communication skills training module for health care professionals about how to conduct a family meeting in palliative care and to evaluate the module in terms of participant self-efficacy and satisfaction.Methods:Forty multispecialty health care professionals from the New York metropolitan area attended a communication skills training module at a Comprehensive Cancer Center about how to conduct a family meeting in oncology. The modular content was based on the Comskil model and current literature in the field.Results:Based on a retrospective pre–post measure, participants reported a significant increase in self-efficacy about their ability to conduct a family meeting. Furthermore, at least 93% of participants expressed their satisfaction with various aspects of the module by agreeing or strongly agreeing with statements on the course evaluation form.Significance of results:Family meetings play a significant role in the palliative care setting, where family support for planning and continuing care is vital to optimize patient care. Although these meetings can be challenging, this communication skills module is effective in increasing the confidence of participants in conducting a family meeting.

scholarly journals Smooth Transitions and Good Deaths: Unique Palliative Needs of Early Deaths Oral Squamous Cell Carcinoma

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 229s-229s
Author(s):  
S. Banoo ◽  
L. Ganigapenta ◽  
C.S. Mani
Keyword(s):  
Palliative Care ◽  
Squamous Cell Carcinoma ◽  
Oral Squamous Cell Carcinoma ◽  
Cell Carcinoma ◽  
Place Of Death ◽  
Advanced Directives ◽  
Early Relapse ◽  
Family Meetings ◽  
Quality Of Death

Background: Early deaths in oral squamous cell carcinoma (OSCC) patients and their unique palliative needs are underresearched. Despite strict selection criteria for curative treatment a substantial proportion undergo transition to palliative intent treatment with early relapse and death within 12 months. There have not been many studies on their transition to palliative care and their supportive care. Aim: Analyze the palliative needs of early relapse and deaths of OSCC patients 1. Assess the most distressing symptom in this cohort of patients 2. Factors contributing to satisfactory death in this group Methods: Retrospective cohort study involving 22 oral squamous cell carcinoma patients who had died between January 2016 to December 2017 within 12 months of being diagnosed and treated with intent to cure. The demographic, staging, treatment, their symptoms, the physician-patient contact time in terms of family meetings, preferred place of death and advanced directives were extracted from the existing database. We also collected the family members opinions about factors that influenced the quality of death of the loved ones. Results: Evaluation of the symptoms that required urgent intervention in this group comprised of pain (76.3%), dyspnea (41%), poor nutrition (23%) and communication difficulties (40%). 14 (60%) required opioids for the pain control. High doses of morphine was used in patients noted to have distant metastasis. 50% of the patients in the group agreed that their preferred place of death was home. And 80% of them had all their advanced directives in place. Factors that greatly contributed to the graceful acceptance of death among the care givers are, distress management, scrupulous management of pain and symptoms during end of life and facilitating their preferred place of death. Among the various factors that we observed that contributed to caregiver satisfaction: the number of physician–family meetings were significant ( P = .0001). Conclusion: Our study confirmed the role of joint family meetings with the treating team and the palliative care with increased frequency has positive impact on the quality of death of this unique cohort of patients with short interval between relapse and death. The complex challenges in early relapse OSCC can be addressed by (1) joint care by primary treating physician and palliative care team. (2) family meetings to be initiated early and conducted more frequently with both treating team and palliative care team. (3) reduced threshold to control of symptoms by potent medication or hospitalization (4) managing the factors that give a satisfactory death in this group in terms preferred place of death, advanced directives, management of distressing symptoms in the end of life. With a more comprehensive understanding of this cohorts unique palliative needs helps the oncology and palliative teams to provide improved patient care, quality of life, smooth transition to palliative care and a good quality of death.

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