Cause of death is an important outcome in end-of-life (EOL) research. However, difficulties in assigning cause of death have been well documented. We compared causes of death in national death registrations with those reported in EOL interviews. Data were from The Irish Longitudinal Study on Ageing (TILDA), a nationally representative sample of community-dwelling adults aged 50 years and older. The kappa agreement statistic was estimated to assess the level of agreement between two methods: cause of death reported in EOL interviews and those recorded in official death registrations. There was moderate agreement between underlying cause of death recorded on death certificates and those reported in EOL interviews. Discrepancies in reporting in EOL interviews were systematic with better agreement found among younger decedents and where the EOL informant was the decedents' partner/spouse. We have shown that EOL interviews may have limited utility if the main goal is to understand the predictors and antecedents of different causes of death.
Background: Avoiding inappropriate care transition and enabling people with chronic diseases to die at home have become important health policy issues. Availability of palliative home care services may be related to dying at home.
Aim: after controlling for the presence of hospital beds and primary care physicians, we examined the association between availability of home palliative care services and dying at home in conditions requiring such services.
Design: Death certificate data in Japan in 2016 were linked with regional healthcare statistics.
Setting/participants: All adults (18 years or older) who died from conditions needing palliative care in 2016 in Japan were included.
Results: There were 922,756 persons included for analysis. Malignant neoplasm (37.4%) accounted for most decedents, followed by heart disease including cerebrovascular disease (31.4%), respiratory disease (14.7%) and dementia/Alzheimer’s disease/senility (11.5%). Of decedents, 20.8% died at home or in a nursing home and 79.2% died outside home (hospital/geriatric intermediate care facility). Death at home was more likely in health regions with fewer hospital beds and more primary care physicians, in total and per condition needing palliative care. Number of home palliative care services was negatively associated with death at home. The adjustment for home palliative care services disappeared in heart disease including cerebrovascular disease and reversed in respiratory disease.
Conclusion: Specialised home palliative care services may be suboptimal, and primary care services may serve as a key access point in providing baseline palliative care to people with conditions needing palliative care. Therefore, primary care services should aim to enhance their palliative care workforce.
Errors in death certification can directly affect the decedent's survivors and the public register. We assessed the effectiveness of an educational seminar targeting frequent and important errors identified by local death certificate (DC) evaluation. Retrospective review of 1500 DCs categorized errors and physician specialty. A 60-minute didactic/case-based seminar was subsequently designed for family medicine physician (FAM) participants, with administration of presurvey, immediate post, and 2-month postsurveys. Most DCs were completed by FAM (73%), followed by internists (18%) and surgeons (3%). Error occurrence (EO) rate ranged between 32 and 75% across all specialities. Family medicine physician experienced in palliative care had the lowest EO rate (32%), significantly lower (P < 0.001) than FAM without interest in palliative care (62%), internal medicine (62%), and surgery (75%). Common errors were use of abbreviations (26%), mechanism as underlying cause of death (23%), and no underlying cause of death recorded (22%). Presurvey participants (n = 72) had an overall EO rate of 72% (64% excluding formatting errors). Immediate postsurvey (n = 75) and 2-month postsurvey (n = 24) participants demonstrated significantly lower overall EO (34% and 24%, respectively), compared with the Pre-S (P < 0.05). A 60-minute seminar on death certification reduced EO rate with perceived long-term effects.
Despite UK national guidance on care after death, it is clear that the bereaved family can experience distress while waiting for the patient's death to be verified. This distress can escalate if there is a delay in verification. Anecdotally, such delays particularly occur out of hours and in community settings. Verification of death is a clinical task and an act of care whereby the identity of the person and death is confirmed. In addition, the subsequent providers of care to the deceased, such as families, mortuary teams, funeral directors and cremation services, have their health and safety protected by the provision of pertinent patient-specific information, for instance, infection risk and implantable devices, within the bounds of confidentiality. During this time, the bereaved family may also receive emotional support and information from the skilled clinician. Registered Nurse Verification of Expected Adult Death (RNVoEAD) guidance and associated competencies have recently been developed to ensure that the registered nurses involved in the patient's care can feel confident about their responsibilities and competent in the process of verifying death. It is hoped that this guidance will help to avoid delays that may cause additional distress to grieving families. This article sets out the rationale for the guidance, as well as discussing outstanding concerns and proposals for future considerations.
Policies and practices have been developed to operationalize assisted dying processes in Canada. This project utilized an environmental scan to determine the spectrum of assisted death reporting practices and medical certificate of death (MCD) completion procedures both nationally and internationally. Findings suggest medically assisted dying (MAiD) is represented on the MCD inconsistently nationally and internationally. Related factors include the specifics of local assisted death legislation and variations in death-reporting legislation, variation in terminology surrounding assisted death and designated oversight agency for assisted dying reporting.
In 2011, the Veterans Health Administration mandated that Veterans Affairs (VA) Medical Centers develop and implement a policy that allowed registered nurses (RNs) and advanced practice registered nurses (APRNs) to pronounce the death of residents who die in Veterans Affairs community living centers, previously known as nursing homes, provided that there is a written do-not-resuscitate order in their medical record. The purpose of this quality improvement project was to determine the extent to which the implementation of the RN/APRN death pronouncement policy affected death pronouncement time for residents who die after 5 PM and before 7:30 AM, on weekends and holidays. This project is significant because the previous physician-only death pronouncement policy was found to cause unnecessary delays in death pronouncement. A chart review of the medical records of all veterans' deaths pronounced by physicians 3 years before the implementation of the policy and 4 years after the RN/APRN policy was reviewed and implemented. The data analysis was conducted using descriptive analysis. A significant difference was found in the results (P < .05). The maximum for prepolicy deaths was 125 minutes. The maximum for postpolicy deaths was 7 minutes. The results supported the assumption that RN/APRN pronounced death without delay.
Patients with hematologic malignancies (HMs) often receive aggressive end-of-life care and less frequently use hospice. Comprehensive longitudinal reporting on place of death, a key quality indicator, is lacking. Deidentified death certificate data were obtained via the National Center for Health Statistics for all HM deaths from 1999 to 2015. Multivariate regression analysis (MVA) was used to test for disparities in place of death associated with sociodemographic variables. During the study period, there were 951 435 HM deaths. Hospital deaths decreased from 54.6% in 1999 to 38.2% in 2015, whereas home (25.9% to 32.7%) and hospice facility deaths (0% to 12.1%) increased (all P < .001). On MVA of all cancers, HM patients had the lowest odds of home or hospice facility death (odds ratio [OR], 0.55; 95% confidence interval, 0.54-0.55). Older age (40-64 years: OR, 1.34; =65 years: OR, 1.89), being married (OR, 1.62), and having myeloma (OR, 1.34) were associated with home or hospice facility death, whereas being black or African American (OR, 0.68), Asian (OR, 0.58), or Hispanic (OR, 0.84) or having chronic leukemia (OR, 0.83) had decreased odds of dying at home or hospice (all P < .001). In conclusion, despite hospital deaths decreasing over time, patients with HMs remained more likely to die in the hospital than at home.
.Objectives: Low/middle-income countries, particularly Small Island Developing States, face many challenges including providing good palliative care and choice in place of care and death, but evidence of the circumstances of dying to inform policy is often lacking. This study explores where people die in Trinidad and Tobago and examines and describes the factors associated with place of death.
Methods: A population-level analysis of routinely collected death certificate and supplementary health data where the unit of analysis was the recorded death. We followed the Reporting of Studies Conducted Using Observational Routinely Collected Health Data reporting guidelines, an extension of Strengthening the Reporting of Observational Studies in Epidemiology, on a deidentified data set on decedents (n=10 221) extracted from International Statistical Classification of Diseases version 10 coded death records for the most recent available year, 2010.
Results: Of all deaths, 55.4% occurred in a government hospital and 29.7% in a private home; 65.3% occurred in people aged 60 years and older. Cardiovascular disease (23.6%), malignancies (15.5%) and diabetes mellitus (14.7%) accounted for over half of all deaths. Dying at home becomes more likely with increasing age (70–89 years (OR 1.91, 95% CI 1.73 to 2.10) and 90–highest (OR 3.63, 95% CI 3.08 to 4.27)), and less likely for people with malignancies (OR 0.85, 95% CI 0.74 to 0.97), cerebrovascular disease (OR 0.61, 95% CI 0.51 to 0.72) and respiratory disease (OR 0.74, 95% CI 0.59 to 0.91).
Conclusion: Place of death is influenced by age, sex, race/ethnicity, underlying cause of death and urbanisation. There is inequality between ethnic groups regarding place of care and death; availability, affordability and access to end-of-life care in different settings require attention.
Ce numéro contient les articles suivants : constat et diagnostic de mort ; le certificat médical de décès ; les formalités relatives à l'éat-civil ; toilette et inventaire ; la chambre mortuaire ; hygiène et prévention ; la sortie de l'hôpital et le transport de corps.
Document essentiel, constat de fin de vie, il porte la signature du médecin qui constate le décès et le déclare.
Indispensable, sans lequel l'inhumation du corps ne peut être réalisable, sa production sous la forme d'un certificat médical doit être établie par le médecin désigné par l'officier d'état civil qui l'a chargé de s'assurer du décès (décret n°60285).
[Début de l'article]
Proper completion of death certificates is of vital importance. This study assessed the accuracy of death certification at one major hospital in Riyadh, Saudi Arabia. We collected all certificates from 1997 to 2016 and scored them on the degree of accuracy. We found no errors of incompleteness or missed contributors to death. However, in all certificates (100%), cause of death was either incorrect or absent; 75% provided no cause of death. Further large-scale studies should be conducted in other hospitals to determine the exact prevalence of these serious errors.
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation – 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap.
METHODS: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained.
DISCUSSION: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.
OBJECTIVE: To examine the concordance between dates of death recorded in UK primary care and national mortality records.
METHODS: UK primary care data from the Clinical Practice Research Datalink were linked to Office for National Statistics (ONS) data, for 118 571 patients who died between September 2010 and September 2015. Logistic regression was used to examine factors associated with discrepancy in death dates between data sets.
RESULTS: Death dates matched in 76.8% of cases with primary care dates preceding ONS date in 2.9%, and following in 20.3% of cases; 92.2% of cases differed by <2 weeks. Primary care date was >4 weeks later than ONS in 1.5% of cases and occurred more frequently with deaths categorised as 'external' (15.8% vs 0.8% for cancer), and in younger patients (15.9% vs 1% for 18-29 and 80-89 years, respectively). General practices with the greatest discrepancies (97.5th percentile) had around 200 times higher odds of recording substantially discordant dates than practices with the lowest discrepancies (2.5th percentile).
CONCLUSION: Dates of death in primary care records often disagree with national records and should be treated with caution. There is marked variation between practices, and studies involving young patients, unexplained deaths and where precise date of death is important are particularly vulnerable to these issues.
Focus sur la certification électronique des décès en Bretagne. Alors que le nombre de décès en Bretagne dépasse depuis 2015 celui des naissances, poursuivre le déploiement du dispositif de certification électronique des décès est devenu un enjeu majeur pour accéder rapidement aux données de décès. Avec près d'un décès sur deux qui a lieu dans un hôpital public, la certification électronique est à privilégier dans ces établissements. La publication présente un éclairage sur la répartition des lieux de décès et dresse un état des lieux du dispositif de certification électronique en Bretagne. Par ailleurs, il met en avant les outils pour faciliter l'utilisation de la certification électronique auprès des médecins déclarants.
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BACKGROUND: End-of-life decisions remain controversial. Switzerland, with three main languages shared with surrounding countries and legal suicide assistance, allows exploration of the effects of cultural differences on end-of-life practices within the same legal framework.
METHODS: We conducted a death certificate study on a nationwide continuous random sample of Swiss residents. Using an internationally standardized tool, we sent 4998, 2965, and 1000 anonymous questionnaires to certifying physicians in the German-, French-, and Italian-speaking regions.
RESULTS: The response rates were 63.5%, 51.9%, and 61.7% in the German-, French-, and Italian-speaking regions, respectively. Non-sudden, expected deaths were preceded by medical end-of-life decisions (MELDs) more frequently in the German- than in the French- or Italian-speaking region (82.3% vs. 75.0% and 74.0%, respectively), mainly due to forgoing life-prolonging treatment (70.0%, 59.8%, 57.4%). Prevalence of assisted suicide was similar in the German- and French-speaking regions (1.6%, 1.2%), with no cases reported in the Italian-speaking region. Patient involvement was smaller in the Italian- than in the French- and German-speaking regions (16.0%, 31.2%, 35.6%). Continuous deep sedation was more frequent in the Italian- than in the French- and German-speaking regions (34.4%, 26.9%, 24.5%), and was combined with MELDs in most cases.
CONCLUSION: We found differences in MELD prevalence similar to those found between European countries. On an international level, MELDs are comparably frequent in all regions of Switzerland, in line with the greater role given to patient autonomy. Our findings show how cultural contexts and legislation can interact in shaping the prevalence of MELDs.
BACKGROUND: In the last decade, the number of patients continuously deeply sedated until death increased up to fourfold. The reasons for this increase remain unclear.
OBJECTIVE: To identify socio-demographic and clinical characteristics of sedated patients, and concurrent possibly life-shortening medical end-of-life decisions.
DESIGN: Cross-sectional death certificate study in German-speaking Switzerland in 2001 and 2013.
PARTICIPANTS: Non-sudden and expected deaths (2001: N = 2281, 2013: N = 2256) based on a random sample of death certificates and followed by an anonymous survey on end-of-life practices among attending physicians.
MAIN MEASURES: Physicians' reported proportion of patients continuously deeply sedated until death, socio-demographic and clinical characteristics, and possibly life-shortening medical end-of life decisions.
KEY RESULTS: In 2013, physicians sedated four times more patients continuously until death (6.7% in 2001; 24.5.5% in 2013). Four out of five sedated patients died in hospitals, outside specialized palliative care units, or in nursing homes. Sedation was more likely among patients younger than 65 (odds ratio 2.24, 95% CI 1.6 to 3.2) and those dying in specialized palliative care (OR 2.2, 95% CI 1.3 to 3.8) or in hospitals (1.7, 95% CI 1.3 to 2.3). Forgoing life-prolonging treatment with the explicit intention to hasten or not to postpone death combined with intensified alleviation of symptoms was very strongly associated with continuous deep sedation (OR 6.8, 95% CI 4.7 to 9.8).
CONCLUSIONS: In Swiss clinical practice, continuously deeply sedated patients predominantly died outside specialized palliative care. The increasing trend over time appears to be related to changes in medical end-of-life practice rather than to patient's clinical characteristics.
BACKGROUND: Most people would prefer to die at home as opposed to hospital; therefore, understanding mortality patterns by place of death is essential for health resources allocation.
AIM: We examined trends and risk factors for hospital death in conditions needing palliative care in a country without integrated palliative care.
DESIGN: This is a death certificate study. We examined factors associated with hospital death using logistic regression.
SETTING/PARTICIPANTS: All adults (1,045,381) who died between 2003 and 2012 in Portugal were included. We identified conditions needing palliative care from main causes of death: cancer, heart/cerebrovascular, renal, liver, respiratory and neurodegenerative diseases, dementia/Alzheimer's/senility and HIV/AIDS.
RESULTS: Conditions needing palliative care were responsible for 70.7% deaths ( N = 738,566, median age 80); heart and cerebrovascular diseases (43.9%) and cancer (32.2%) accounted for most. There was a trend towards hospital death (standardised percentage: 56.3% in 2003, 66.7% in 2012; adjusted odds ratio: 1.04, 95% confidence interval: 1.04-1.04). Hospital death risk was higher for those aged 18-39 years (3.46, 3.25-3.69 vs aged 90+), decreasing linearly with age; lower in dementia/Alzheimer's/senility versus cancer (0.13, 0.13-0.13); and higher for the married and in HIV/AIDS (3.31, 3.00-3.66). Effects of gender, working status, weekday and month of death, hospital beds availability, urbanisation level and deprivation were small.
CONCLUSION: The upward hospital death trend and fact that being married are risk factors for hospital death suggest that a reliance on hospitals may coexist with a tradition of extended family support. The sustainability of this model needs to be assessed within the global transition pattern in where people die.
BACKGROUND: The burden of medications near the end of life has recently come under scrutiny, because several studies suggested that people with life-limiting illness receive potentially futile treatments.
METHODS: We identified 511,843 older adults (>65 years) who died in Sweden between 2007 and 2013 and reconstructed their drug prescription history for each of the last 12 months of life through the Swedish Prescribed Drug Register. Decedents' characteristics at time of death were assessed through record linkage with the National Patient Register, the Social Services Register, and the Swedish Education Register.
RESULTS: Over the course of the final year before death, the proportion of individuals exposed to =10 different drugs rose from 30.3% to 47.2% (P <.001 for trend). Although older adults who died from cancer had the largest increase in the number of drugs (mean difference, 3.37; 95% confidence interval, 3.35 to 3.40), living in an institution was independently associated with a slower escalation (ß = -0.90, 95% confidence interval, -0.92 to -0.87). During the final month before death, analgesics (60.8%), anti-throm-botic agents (53.8%), diuretics (53.1%), psycholeptics (51.2%), and ß-blocking agents (41.1%) were the 5 most commonly used drug classes. Angiotensin-converting enzyme inhibitors and statins were used by, respectively, 21.4% and 15.8% of all individuals during their final month of life.
CONCLUSION: Polypharmacy increases throughout the last year of life of older adults, fueled not only by symptomatic medications but also by long-term preventive treatments of questionable benefit. Clinical guidelines are needed to support physicians in their decision to continue or discontinue medications near the end of life.
When patients die in emergency departments (EDs), it is important to record information that can be shared with staff in other departments, such as the mortuary and bereavement office. This can be a time-consuming exercise but, if information is omitted, it can increase families' distress by delaying documents such as death certificates. This article describes how a new, tick-box-style death-in-department checklist was introduced in a London hospital adult ED to increase and improve communication and information sharing between the ED, the mortuary and the bereavement office. Audits undertaken before and after the introduction of the checklist show a 75% increase in the recording and sharing of information between relevant departments. The positive effect of the new checklist has led to its introduction in another, associated ED, and it has been incorporated into the trust's end of life care policy.
This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales (N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.