scholarly journals Location of Death and End-of-Life Care

2016 ◽  
Vol 19 (1) ◽  
pp. 5-10 ◽  
Author(s):  
YongJoo Rhee
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Location Of Death

Abstract 14806: Circumstances Surrounding End of Life in Pediatric Heart Transplant: A Report From the Pediatric Heart Transplant Society

Circulation ◽  
2020 ◽  
Vol 142 (Suppl_3) ◽  
Author(s):  
Melissa K Cousino ◽  
Sunkyung Yu ◽  
Elizabeth Blume ◽  
Heather T Henderson ◽  
Seth Hollander ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
End Of Life ◽  
Heart Transplant ◽  
End Of Life Care ◽  
Time Of Death ◽  
Life Care ◽  
Location Of Death ◽  
Technological Interventions ◽  
Family Decision ◽  
Pediatric Heart Transplant

Introduction: The Institute of Medicine called for scientific investigation and the development of guidelines to improve end of life care for pediatric patients with serious illnesses. Despite high morbidity and mortality in pediatric heart transplantation (HTx), research on the end of life care needs of this population is extremely limited. Aims: This study aimed to describe the circumstances surrounding death of pediatric HTx patients and examine associations between location of death and technological interventions at end-of-life with demographic, disease, and HTx-related factors. Methods: This retrospective analysis of the Pediatric Heart Transplant Society registry utilized descriptive statistics and standard univariate analysis to examine associations between location of death and patient factors. Results: Of 9,217 registry entries, 2,804 (30%) deaths occurred; 1,310 while awaiting HTx; 1,494 post-HTx. Location of death was only recorded for 1,113 patients which included 804 waitlist deaths; 89% occurred in the hospital, primarily in ICU settings (74%) with most requiring mechanical ventilation (77%). A subset (39%) were supported by ECMO/VAD at time of death with 69% receiving inotrope support. Location of death was captured for 309 post-HTx patients with only 22% occurring in hospital; primarily in the ICU (74%) with half receiving mechanical ventilation (52%) and a smaller proportion supported by ECMO/VAD (18%) or inotropes (21%) at time of death. Overall, location of death was not associated with patient sex, race, ethnicity, insurance type, or primary etiology. Out of hospital death was associated with older patient age (p<0.01). Family decision to withdraw life-sustaining interventions was included as a contributing cause of death in 5.4% of waitlist cases and 3.5% of post-HTx cases. Conclusions: Death occurred in ~1/3 of patients captured in this pediatric HTx registry. ICU deaths with high use of technological interventions were common, particularly in waitlisted patients, but family decision to discontinue interventions was infrequently cited. Findings underscore the need for palliative care interventions and improved research strategies to better understand end of life in pre- and post-HTx pediatric populations.

scholarly journals Race/Ethnicity as a Predictor for Location of Death in Patients With Acute Neurovascular Events

2017 ◽  
Vol 35 (1) ◽  
pp. 100-103 ◽  
Author(s):  
Say Salomon ◽  
Elizabeth Chuang ◽  
Deepa Bhupali ◽  
Daniel Labovitz
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Low Income ◽  
End Of Life Care ◽  
Medical Center ◽  
Academic Medical Center ◽  
Ethnic Disparities ◽  
Life Care ◽  
Location Of Death ◽  
Important Quality

Background: Site of death is an important quality indicator for patients with terminal illness. Racial and ethnic disparities exist in the quality of end-of-life care. This study explores the site of death of patients admitted for and dying of complications of acute neurovascular events in a hospital network in an urban, low-income, predominantly minority community. Methods: This is a retrospective cohort study of patients admitted to 1 of 3 general hospitals that are part of an academic medical center in Bronx, New York, with the diagnosis of acute ischemic stroke, intracerebral hemorrhage, or subarachnoid hemorrhage who died during the index admission or were discharged with hospice services. The main outcome was location of death (palliative care inpatient unit [IPU] at the medical center or hospice services at discharge vs death on any other IPU). Results: A total of 655 patients admitted with acute neurovascular events from January 1, 2009, to March 1, 2015, died or were discharged with hospice services and were included in the analysis. Of those patients, 238 (36.3%) were black, 233 (35.5%) were Hispanic, and 184 (28.1%) were white. A total of 178 (24.4%) died on the palliative care unit or were discharged with hospice services, including 55 black patients (23.1%), 52 (28.3%) white patients, and 53 (22.7%) Hispanic patients. These differences were not statistically significant, even when controlling for confounders. Conclusion: This study did not show a difference in site of death in our institution by race or ethnicity, which is considered an important quality end-of-life care metric.

P14.27 Exploring end-of-life care in the GlioCova national brain tumour patient cohort

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii43-ii43
Author(s):  
R Mauricaite ◽  
K Le Calvez ◽  
J Droney ◽  
M Caldano ◽  
M Alam ◽  
...  
Keyword(s):  
End Of Life ◽  
Brain Tumour ◽  
Cause Of Death ◽  
End Of Life Care ◽  
Care Home ◽  
Malignant Neoplasm ◽  
Adult Brain ◽  
Life Care ◽  
Location Of Death ◽  
National Analysis

Abstract BACKGROUND Brain tumours are the leading cause of cancer deaths in the under-40s. Research on end-of-life care, especially in brain tumour patients is rare, yet important to patients and carers. The GlioCova project holds data on all adult brain tumour patients in England diagnosed between 2013 and 2018. Using this linked data set, we performed preliminary analysis on end-of-life care, focusing on treatment close to death and place of death. MATERIAL AND METHODS We used data from the English National Cancer Registry and identified all patients with a primary CNS tumour (ICD-10: C70, C71, C72) who were diagnosed between 2013 - 2018. We examined demographics, tumour morphology and grade, primary cause of death, treatment received within the last 3 and 1 month of life, and the location of death. For patients with unclear location of death (‘unknown’, ‘other’, ‘NA’), we looked at their final destination of discharge recorded in their last inpatient admission. RESULTS We identified 26,239 brain tumour patients of whom 20,715 had died. 41.7% were female and median age was 68 (IQR=19). Most patients had a malignant neoplasm of brain (98.6%), followed by meninges (0.7%) and spinal cord, cranial nerves and other parts of central nervous system (0.7%). The most common primary cause of death was malignant neoplasm (70%). Of the 10,021(48.4%) patients who received radiotherapy at any time between diagnosis and death, 1,341 (6.5%) received it within the last three months of life and 254 (1.3%) received it within the last month of life. Of the 5,957 (28.8%) patients who received chemotherapy, 1,358 (6.6%) started a chemotherapy regimen 3 months and 200 (0.97%) 1 month before death. 36.0% of all patients died at home, 23.8% at hospital, 14.7% in a hospice and 8.8% in a nursing home. For 16.7% of patients with an unclear location of death, the most common destination of discharge during their last hospital admission was usual place of residence (54.5%), non-NHS run Care Home (13.9%), NHS run Care Home (11.2%). CONCLUSION To the best of our knowledge, this is the first national analysis of end-of-life care in brain tumour patients. Active treatment towards the end of life and in a hospital deaths appear lower in brain tumour patients than in studies of other cancer groups.

scholarly journals Location of end-of-life care of children with cancer: a systematic review of parent experiences

2021 ◽  
Author(s):  
Michelle Noyes ◽  
Anthony Herbert ◽  
Susan Moloney ◽  
Helen Irving ◽  
Natalie Bradford
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospital Staff ◽  
Hospital Environment ◽  
Life Care ◽  
Children With Cancer ◽  
Parental Decision Making ◽  
Location Of Death

Objective: To synthesise existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision making when choosing the location of end-of-life care and death for their child. Results: This review included 15 studies involving 460 parents of 333 children and adolescents who died from progressive cancer. Where reported, the majority (58%) of children died at home or in a hospital (39%), with only a small fraction dying in a hospice. Factors impacting decision-making for location of care included the quality of communication and the quality of care available. Themes related to choosing home for end-of-life care and death included: honouring the child’s wishes, familiarity of home, and parents’ desire to be their child’s primary carer. Preference for location of death in hospital included trust in hospital staff, practical logistics and the safety of the hospital environment.

scholarly journals Evaluating satisfaction with the quality and provision of end-of-life care for patients from diverse ethnocultural backgrounds

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ayah Nayfeh ◽  
Christopher J. Yarnell ◽  
Craig Dale ◽  
Lesley Gotlib Conn ◽  
Brigette Hales ◽  
...  
Keyword(s):  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Communication Barriers ◽  
Life Care ◽  
Priority Areas ◽  
Location Of Death ◽  
Language Communication ◽  
Care Improvement

Abstract Background Recently immigrated and ethnic minority patients in Ontario, Canada are more likely to receive aggressive life-prolonging treatment at the end of life in comparison to other patients. To explore this finding further, this survey-based observational study aimed to evaluate satisfaction with the quality of end-of-life care for patients from diverse ethnocultural backgrounds. Methods The End-of-Life Satisfaction Survey was used to measure satisfaction with the quality of inpatient end-of-life care from the perspective of next-of-kin of recently deceased patients at Sunnybrook Health Sciences Centre in Toronto, Ontario (between March 2012 to May 2019). The primary outcome was the global rating of satisfaction. Associations with patient ethnicity, patient religion, level of religiosity/spirituality, language/communication barriers, and location of death were assessed using univariable and multivariable modified Poisson regression. Secondary outcomes included differences in satisfaction and rates of dying in intensive care units (ICU) among patient population subgroups, and identification of high priority areas for quality-of-care improvement. Results There were 1,543 respondents. Patient ethnicities included Caucasian (68.2%), Mediterranean (10.5%), East Asian (7.6%), South Asian (3.5%), Southeast Asian (2.1%) and Middle Eastern (2.0%); religious affiliations included Christianity (66.6%), Judaism (12.3%) and Islam (2.1%), among others. Location of death was most commonly in ICU (38.4%), hospital wards (37.0%) or long-term care (20.0%). The mean(SD) rating of satisfaction score was 8.30(2.09) of 10. After adjusting for other covariates, satisfaction with quality of end-of-life care was higher among patients dying in ICU versus other locations (relative risk [RR] 1.51, 95%CI 1.05-2.19, p=0.028), lower among those who experienced language/communication barriers (RR 0.49 95%CI 0.23-1.06, p=0.069), and lower for Muslim patients versus other religious affiliations (RR 0.46, 95%CI 0.21-1.02, p=0.056). Survey items identified as highest priority areas for quality-of-care improvement included communication and information giving; illness management; and healthcare provider characteristics such as emotional support, doctor availability and time spent with patient/family. Conclusion Satisfaction with quality-of-care at the end of life was higher among patients dying in ICU and lower among Muslim patients or when there were communication barriers between families and healthcare providers. These findings highlight the importance of measuring and improving end-of-life care across the ethnocultural spectrum.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

Die Entwicklung eines Instruments zur «Evaluation stationärer Hospize aus der Perspektive hinterbliebener Angehöriger» (EHPA)

Pflege ◽  
2011 ◽  
Vol 24 (3) ◽  
pp. 171-182
Author(s):  
Mandy Lohe ◽  
Manja Zimmermann ◽  
Christiane Luderer ◽  
Katharina Sadowski
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Subjektive Bewertung ◽  
Ethische Probleme

Als Einrichtungen des Gesundheitswesens sind stationäre Hospize in Deutschland zur Qualitätssicherung und internen Qualitätsentwicklung verpflichtet. Die Bedeutung der Patientenzufriedenheit als einer der indirekten Indikatoren zur Beurteilung der Pflege- und Betreuungsqualität ist mittlerweile unumstritten. Eine subjektive Bewertung des Hospizes durch den Gast selbst birgt sowohl praktische als auch ethische Probleme. Eine Befragung der Angehörigen empfiehlt sich. Der vorliegende Artikel beschreibt die Entwicklung eines Instruments zur Evaluation stationärer Hospize aus der Sicht hinterbliebener Angehöriger. Mit dessen Hilfe soll die Frage, wie Angehörige die Begleitung und Pflege beurteilen, die ihnen sowie ihrem verstorbenen Familienmitglied durch das Hospiz zuteil wurde, beantwortet werden. Die Konstruktion der Fragen erfolgte auf Basis bestehender Konzepte zum Assessment der end-of-life care und einer Analyse aller identifizierten Instrumente zur Evaluation stationärer Hospize aus der Perspektive hinterbliebener Angehöriger. Die Fragebogenentwicklung umfasste neben der umfassenden Literaturrecherche die Bildung eines Itempools, die Itemauswahl, die kritische Diskussion der Fragen im Expertenkreis sowie einen standardisierten und kognitiven Pretest. Entstanden ist ein fünfdimensionaler Fragebogen, der physische, psychologische, soziale, spirituelle und versorgungsorganisatorische Aspekte der end-of-life care integriert. Das Instrument umfasst 53 Items in Form überwiegend geschlossener Fragen.

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