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 How do patients die in a rehabilitative unit dedicated to advanced respiratory diseases?

2012 ◽  
Vol 7 ◽  
Author(s):  
Michele Vitacca ◽  
Laura Comini
Keyword(s):  
Mechanical Ventilation ◽  
End Of Life ◽  
Organizational Support ◽  
End Of Life Care ◽  
Current Data ◽  
Life Care ◽  
Copd Patients ◽  
Number Of Patients ◽  
Almost All

Background: Evidences on how in-hospital COPD patients are cared in a Rehabilitative Respiratory Unit during the last time before death are lacking. This observational study was aimed at 1. analyzing the characteristics of respiratory patients who die in a Rehabilitative Unit dedicated to advanced care; 2. studying the available organizational support related to the dying process and quality of care in the last week of life. Methods: Medical records (MR) of patients suffering from respiratory disease admitted to a Rehabilitative Respiratory Unit during the last seven years (2005–2011) were collected retrospectively. Only MR of patients who died of respiratory complications were considered. This study describes clinical and demographic variables or information about drugs, procedures, health and unprofessional teams, intervention and interaction, habits and wishes in the last week of life. Results: 110 patients out of 2,615 subjects (4.2%) died during the period of observation. 87 out of 110 patients fulfilled the inclusion criteria. They were aged, males, retired, severely compromised, with previous stays in an acute hospital and with a long stay in our unit. Most of them were married, lived in a small village and were cared at home by a caregiver. One third of patients came from Intensive Care Units. During the last week of life, hours spent under mechanical ventilation were extremely high both for patients under invasive (22.3 ± 3.1 hours) and non invasive ventilation (NIV) (17.5 ± 3.4 hours). The number of patients who maintained NIV was twice that of the intubated ones. Breathlessness and secretion encumbrance were the main symptoms. Secretion management was necessary in more than 50% of the cases. Communication between patient and doctor was good in the majority (67%) of the cases. Patient’s and family wishes, aimed at improving their relationships, were obtained in a high percentage (63%) of the cases. Doctors prescribed sedative in a half of patients and morphine only in 40% of the cases. Patients mainly died for acute respiratory failure (55%) or infective complications (34%), almost all under mechanical ventilation. Only a minority of them (28%) reported to have had a discussion about end-of-life care with their physician; palliative/end of life decisions were taken in 13% of the cases. Sustaining figures such as psychologist (17%) or clergy (13%) were marginally required. Conclusions: The current data have confirmed that, also in a Rehabilitative Respiratory setting, quality of end-of-life care and patient-physician communication need further improvement.

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.

Aggressive End-of-Life Care and Symptom Relief Treatments in Terminally Ill Patients Who Had Discussed Withdrawal of Mechanical Ventilation: A Hospital-Based Observational Study

2020 ◽  
Vol 37 (11) ◽  
pp. 897-903
Author(s):  
Hsiao-Ting Chang ◽  
Ming-Hwai Lin ◽  
Chun-Ku Chen ◽  
Tzeng-Ji Chen ◽  
Shinn-Jang Hwang
Keyword(s):  
Mechanical Ventilation ◽  
Observational Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Symptom Relief ◽  
Terminally Ill ◽  
Shared Care ◽  
Life Care ◽  
Terminally Ill Patients ◽  
The Status

Objective: The aim of this study was to explore the status of aggressive end-of-life care and symptom relief treatments in terminally ill patients who had discussed the withdrawal of mechanical ventilation. Methods: This research is a retrospective observational study based on a chart review. Terminal patients aged ≥20 years, who were intubated with mechanical ventilation support, who underwent hospice-shared care, and who personally, or whose close relatives, had discussed the withdrawal of mechanical ventilation with hospice-shared care team members in a tertiary hospital in Taiwan during 2012 to 2015 were included. Demographics, medical conditions, and aggressive end-of-life care, including hospitalization, use of vasopressors, artificial nutrition, tube feeding, antibiotics, and symptom relief treatments including the use of opioids, steroids, and sedatives, were identified. The modes of care and treatments of patients by the status of withdrawal of mechanical ventilation were compared. Results: A total of 141 patients had discussed the withdrawal of mechanical ventilation, and 111 (78.7%) had been withdrawn. Aggressive end-of-life care was noted in all patients regardless of mechanical ventilation status. There were no significant differences in the number and pattern of aggressive end-of-life care measures between patients who had or had not been withdrawn. There were significantly higher rates of symptom relief treatments used in patients who had been withdrawn. Conclusions: Aggressive end-of-life care is common for patients who have discussed the withdrawal of mechanical ventilation. There are significantly higher rates of symptom relief medications administered in patients who have been withdrawn from mechanical ventilation.

IMPLEMENTATION OF AN END-OF-LIFE CARE PROGRAM FOR DYING PATIENTS RECEIVING MECHANICAL VENTILATION

CHEST Journal ◽  
2006 ◽  
Vol 130 (4) ◽  
pp. 204S ◽  
Author(s):  
Janet M. Shapiro ◽  
Brenda Matti ◽  
Hassan Khouli ◽  
Tricia Dillman ◽  
Rosa Williams
Keyword(s):  
Mechanical Ventilation ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Program ◽  
Life Care ◽  
Dying Patients

scholarly journals Analysis of high-intensity care in intensive care units and its cost at the end of life among older people in South Korea between 2016 and 2019: a cross-sectional study of the health insurance review and assessment service national patient sample database

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e049711
Author(s):  
Yunji Lee ◽  
Minjeong Jo ◽  
Taehwa Kim ◽  
Kyoungsun Yun
Keyword(s):  
Older Adults ◽  
Mechanical Ventilation ◽  
Intensive Care ◽  
Health Insurance ◽  
South Korea ◽  
End Of Life ◽  
High Intensity ◽  
End Of Life Care ◽  
Life Care ◽  
Cross Sectional

ObjectivesTo provide useful information for clinicians and policy makers to prepare guidelines for adequate use of medical resources during end-of-life period by analysing the intensive care use and related costs at the end of life in South Korea.DesignCross-sectional, retrospective, observational study.SettingTertiary hospitals in South Korea.ParticipantsWe analysed claim data and patient information from the Health Insurance Review and Assessment Service national dataset. This dataset included 19 119 older adults aged 65 years or above who received high-intensity care at least once and died in the intensive care unit in South Korea between 2016 and 2019. High-intensity care was defined as one of the following treatments or procedures: cardiopulmonary resuscitation, mechanical ventilation, extra-corporeal membrane oxygenation, haemodialysis, transfusion, chemotherapy and vasopressors.Primary and secondary outcome measuresUsage and cost of high-intensity care.ResultsThe most commonly used high-intensity care was transfusion (68.9%), mechanical ventilation (50.6%) and haemodialysis (35.7%) during the study period. The annual cost of high-intensity care at the end of life increased steadily from 2016 to 2019. There existed differences by age, gender, length of hospital stays and primary cause of death in use of high-intensity care and associated costs.ConclusionFindings indicate that invasive and device-dependent high-intensity care is frequently provided at the end of life among older adults, which could potentially place an economic burden on patients and their families. In Korea’s ageing society, increased rates of chronic illness are expected to significantly burden those who lack the financial resources to provide end-of-life care. Therefore, guidelines for the use of high-intensity care are required to ensure affordable end-of-life care.

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.

Paediatric end-of-life care – symptoms and problems: parent assessment

2021 ◽  
pp. bmjspcare-2021-002891
Author(s):  
Camilla Lykke ◽  
Ola Ekholm ◽  
Marianne Olsen ◽  
Per Sjøgren
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Descriptive Statistics ◽  
Fear Of Death ◽  
Time Of Death ◽  
Life Care ◽  
Systematic Screening ◽  
Parent Assessment ◽  
Self Administered Questionnaire

ObjectiveSymptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care.MethodsAll parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012–2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents’ assessments of S&P during the last month of life were restricted to children aged 3–18 years. Data were analyses by means of descriptive statistics.ResultsChildren ≥3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced ‘mess-ups’ or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death.ConclusionAccording to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered.

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