For patients receiving palliative care, expressing a preferred place of death (PPD) reduces anxiety and depression and increases the likelihood of achieving their preference. However, during the course of a life-limiting illness, patients commonly change their PPD at least once prior to death. The aim of this study was to identify the pattern and timing of how patients (and families) receiving specialist palliative care change their PPD over time. A retrospective chart audit was conducted of patients who died over a 7-month period whilst in the care of a metropolitan-based Community Specialist Palliative Care Service where PPD is routinely recorded every time a discussion on the topic occurs. These discussions are triggered by various factors which highlight the need to re-assess or confirm PPD. Results showed that 80% of patients achieved their PPD. There was no change to PPD in 64% of patients after the initial assessment, while 36% changed preferences once (27%), twice (8%) or three times (1%). Symptom management (10%) and family requests (30%) were cited as reasons for changing PPD. This study highlights that providers should revisit end-of-life discussions with patients along the disease trajectory and facilitate the consideration of all possible places for a good and safe death and the different scenarios that may influence patient decisions.
PURPOSE: The aim of the study was to evaluate the feasibility and the potential effects of the Haematological Home Care (HHC) programme for acute leukaemia (AL) patients, either in active chemotherapy or in the terminal phase of disease.
METHODS: We retrospectively assessed a group of AL patients assisted at home in terms of number of hospitalisations, accesses to emergency department and place of death. We also used historical data to evaluate potential effects of HHC.
RESULTS: The study group consisted of 44 patients, 36 of whom (82%) required palliative treatment, and eight (18%) had ongoing active chemotherapy. The mean number of hospitalisations was 0.64 (range 0-7) per patient, and the number of emergency department (ED) visits was 0.82 (range 0-4) per patient. Place of death was at home for 51.4% of patients and in hospital for 40.5%. Considering a historical group of 17 patients assisted at home the rate of hospitalisations and ED visits were 2.53 (range 0-9) and one (range 0-3), respectively. Place of death was home and hospital in 6% and 65%, respectively.
CONCLUSIONS: Haematological Home Care for AL patients is feasible and has potential positive effects in terms rate of hospitalisations and place of death.
BACKGROUND: Studies have shown that more than half of patients with advanced progressive diseases approaching the end-of-life report pain and that pain relief for these patients is poorest at home compared to other care settings such as acute care facilities and hospice. Although home is the most common preferred place of death, the majority of deaths occur outside the home. Specialist palliative care is associated with improved quality of life, but systematic reviews of RCTs have failed to show a consistent association with better pain relief. The aim of this study was to examine the factors associated with good pain relief at home in the last 3 months of life for people with advanced progressive disease.
METHODS: Data were obtained from the National Bereavement Survey in England, a cross-sectional post-bereavement survey of a stratified random sample of 246,763 deaths which were registered in England from 2011 to 2015. From 110,311 completed surveys (45% response rate), the analysis was based on individual-level data from 43,509 decedents who were cared for at home before death.
RESULTS: Decedents who experienced good pain relief at home before death were significantly more likely to have received specialist palliative care (adjusted OR = 2.67; 95% CI, 2.62 to 2.72) and to have a recorded preferred place of death (adjusted OR = 1.87; 95% CI, 1.84 to 1.90) compared to those who did not. Good pain relief was more likely to be reported by a spouse or partner of the decedents compared to reports from their son or daughter (adjusted OR = 1.50, 95% CI, 1.47 to 1.53).
CONCLUSION: This study indicates that patients at home who are approaching the end-of-life experience substantially better pain relief if they receive specialist palliative care and their preferred place of death is recorded regardless of their disease aetiology.
BACKGROUND: Existing quantitative evidence suggests that at a population level, socioeconomic factors affect access to preferred place of death. However, the influence of individual and contextual socioeconomic factors on preferred place of death are less well understood.
AIM: To systematically synthesise the existing qualitative evidence for socioeconomic factors affecting access to preferred place of death in the United Kingdom.
DESIGN: A thematic synthesis of qualitative research.
DATA SOURCES:: Cochrane Library, MEDLINE, Embase, CINAHL, ASSIA, Scopus and PsycINFO databases were searched from inception to May 2018.
RESULTS: A total of 13 articles, reporting on 12 studies, were included in the synthesis. Two overarching themes were identified: 'Human factors' representing support networks, interactions between people and decision-making and 'Environmental factors', which included issues around locations and resources. Few studies directly referenced socioeconomic deprivation. The main factor affecting access to preferred place of death was social support; people with fewer informal carers were less likely to die in their preferred location. Other key findings included fluidity around the concept of home and variability in preferred place of death itself, particularly in response to crises.
CONCLUSION: There is limited UK-based qualitative research on socioeconomic factors affecting preferred place of death. Further qualitative research is needed to explore the barriers and facilitators of access to preferred place of death in socioeconomically deprived UK communities. In practice, there needs to be more widespread discussion and documentation of preferred place of death while also recognising these preferences may change as death nears or in times of crisis.
BACKGROUND: dying in one's preferred place is a quality marker for end-of-life care. Little is known about preferred place of death, or the factors associated with achieving this, for people with dementia.
AIMS: to understand preferences for place of death among people with dementia; to identify factors associated with achieving these preferences.
POPULATION: adults with a diagnosis of dementia who died between December 2015 and March 2017 and who were registered on Coordinate My Care, an Electronic Palliative Care Coordination System.
DESIGN: retrospective cohort study.
ANALYSIS: multivariable logistic regression investigated factors associated with achieving preferred place of death.
RESULTS: we identified 1,047 people who died with dementia; information on preferred and actual place of death was available for 803. Preferred place of death was most commonly care home (58.8%, n = 472) or home (39.0%, n = 313). Overall 83.7% (n = 672) died in their preferred place. Dying in the preferred place was more likely for those most functionally impaired (OR 1.82 95% CI 1.06-3.13), and with a ceiling of treatment of 'symptomatic relief only' (OR 2.65, 95% CI 1.37-5.14). It was less likely for people with a primary diagnosis of cancer (OR 0.52, 95% CI 0.28-0.97), those who were 'for' cardio-pulmonary resuscitation (OR 0.32, 95% CI 0.16-0.62) and those whose record was created longer before death (51-250 days (ref <50 days) OR 0.60, 95% CI 0.38-0.94).
CONCLUSIONS: most people with dementia want to die in a care home or at home. Achieving this is more likely where goals of treatment are symptomatic relief only, indicating the importance of advance care planning.
Purpose: Patients with haematological malignancies are more likely to die in hospital, and less likely to access palliative care than people with other cancers, though the reasons for this are not well understood. The purpose of our study was to explore haematology nurses' perspectives of their patients’ places of care and death.
Method: Qualitative description, based on thematic content analysis. Eight haematology nurses working in secondary and tertiary hospital settings were purposively selected and interviewed. Transcriptions were coded and analysed for themes using a mainly inductive, cross-comparative approach.
Results: Five inter-related factors were identified as contributing to the likelihood of patients’ receiving end of life care/dying in hospital: the complex nature of haematological diseases and their treatment; close clinician-patient bonds; delays to end of life discussions; lack of integration between haematology and palliative care services; and barriers to death at home.
Conclusions: Hospital death is often determined by the characteristics of the cancer and type of treatment. Prognostication is complex across subtypes and hospital death perceived as unavoidable, and sometimes the preferred option. Earlier, frank conversations that focus on realistic outcomes, closer integration of palliative care and haematology services, better communication across the secondary/primary care interface, and an increase in out-of-hours nursing support could improve end of life care and facilitate death at home or in hospice, when preferred.
Previous studies have revealed that there is significant geographical variation in place of death in (PoD) England, with sociodemographic and clinical characteristics explaining = 25% of this variation. Service factors, mostly modifiable, may account for some of the unexplained variation, but their role had never been evaluated systematically. A national population-based observational study in England, using National Death Registration Database (2014) linked to area-level service data from public domains, categorised by commissioning, type and capacity, location and workforce of the services, and the service use. The relationship between the service variables and PoD was evaluated using beta regression at the area level and using generalised linear mixed models at the patient level. The relative contribution of service factors at the area level was assessed using the per cent of variance explained, measured by R2. The total impact of service factors was evaluated by the area under the receiver operating characteristic curve (AUC). The independent effect of service variables was measured at the individual level by odds ratios (ORs)., Among the 431,735 adult deaths, hospitals were the most common PoD (47.3%), followed by care homes (23.1%), homes (22.5%) and hospices (6.1%). One-third (30.3%) of the deaths were due to cancer and two-thirds (69.7%) were due to non-cancer causes. Almost all service categories studied were associated with some of the area-level variation in PoD. Service type and capacity had the strongest link among all service categories, explaining 14.2–73.8% of the variation; service location explained 10.8–34.1% of the variation. The contribution of other service categories to PoD was inconsistent. At the individual level, service variables appeared to be more useful in predicting death in hospice than in hospital or care home, with most AUCs in the fair performance range (0.603–0.691). The independent effect of service variables on PoD was small overall, but consistent. Distance to the nearest care facility was negatively associated with death in that facility. At the Clinical Commissioning Group level, the number of hospices per 10,000 adults was associated with a higher chance of hospice death in non-cancer causes (OR 30.88, 99% confidence interval 3.46 to 275.44), but a lower chance of hospice death in cancer causes. There was evidence for an interaction effect between the service variables and sociodemographic variables on PoD., This study was limited by data availability, particularly those specific to palliative and end-of-life care; therefore, the findings should be interpreted with caution. Data limitations were partly due to the lack of attention and investment in this area., A link was found between service factors and PoD. Hospice capacity was associated with hospice death in non-cancer cases. Distance to the nearest care facility was negatively correlated with the probability of a patient dying there. Effect size of the service factors was overall small, but the interactive effect between service factors and sociodemographic variables suggests that high-quality end-of-life care needs to be built on service-level configuration tailored to individuals’ circumstances., A large data gap was identified and data collection is required nationally on services relevant to palliative and end-of-life care. Future research is needed to verify the identified links between service factors and PoD., The National Institute for Health Research Health Services and Delivery Research programme.
CONTEXT: Identifying factors that affect terminally ill patients' preferences for and actual place of death may assist patients to die where they wish.
OBJECTIVE: To investigate factors associated with preferred and actual place of death for cancer patients in Johannesburg, South Africa.
METHODS: In a prospective cohort study at a tertiary hospital in Johannesburg South Africa, adult patients with advanced cancer and their caregivers were enrolled from 2016 to 2018. Study nurses interviewed the patients at enrolment and conducted post-mortem interviews with the caregivers.
RESULTS: Of 324 patients enrolled, 191 died during follow-up. Preferred place of death (POD) was home for 127 (66.4%) and a facility for 64 (33.5%) patients; 91 (47.6%) patients died in their preferred setting, with a kappa value of congruence of 0.016 (95% confidence interval = -0.107 - 0.139). Factors associated with congruence were increasing age (OR: 1.03, 95% CI: 1.00-1.05), use of morphine (OR: 1.87, 95% CI: 1.04-3.36) and wanting to die at home (OR: 0.44, 95% CI: 0.24-0.82). Dying at home was associated with increasing age (OR 1.03, 95%CI 1.00-1.05), and with the patient wishing to have family and/or friends present at death (OR 6.73, 95% CI 2.97-15.30).
CONCLUSION: Most patients preferred to die at home, but most died in hospital and fewer than half died in their preferred setting. Further research on modifiable factors, such as effective communication, access to palliative care and morphine may ensure that more cancer patients in South Africa, die where they wish.
BACKGROUND: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited.
OBJECTIVE: The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death.
DESIGN: A retrospective cohort analysis of administrative and electronic medical record data was employed.
SETTING/SUBJECTS: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224).
MEASUREMENTS: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record.
RESULTS: Sixty-six (29%) of the children were <1 year old at death; 80 (36%) were 1–9 years old, and 78 (35%) were 10–22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1–9 years, and 46% for children of ages 10–22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050).
CONCLUSIONS: Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability.
BACKGROUND: People with haematological malignancies have different end-of-life care patterns from those with other cancers and are more likely to die in hospital. Little is known about patient and relative preferences at this time and whether these are achieved.
AIM: To explore the experiences and reflections of bereaved relatives of patients with leukaemia, lymphoma or myeloma, and examine (1) preferred place of care and death; (2) perceptions of factors influencing attainment of preferences; and (3) changes that could promote achievement of preferences.
DESIGN: Qualitative interview study incorporating 'Framework' analysis.
SETTING/PARTICIPANTS: A total of 10 in-depth interviews with bereaved relatives.
RESULTS: Although most people expressed a preference for home death, not all attained this. The influencing factors include disease characteristics (potential for sudden deterioration and death), the occurrence and timing of discussions (treatment cessation, prognosis, place of care/death), family networks (willingness/ability of relatives to provide care, knowledge about services, confidence to advocate) and resource availability (clinical care, hospice beds/policies). Preferences were described as changing over time and some family members retrospectively came to consider hospital as the 'right' place for the patient to have died. Others shared strong preferences with patients for home death and acted to ensure this was achieved. No patients died in a hospice, and relatives identified barriers to death in this setting.
CONCLUSION: Preferences were not always achieved due to a series of complex, interrelated factors, some amenable to change and others less so. Death in hospital may be preferred and appropriate, or considered the best option in hindsight.
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.
En 2017, 606 000 personnes sont décédées en France. La moitié avait plus de 83 ans et un quart plus de 90 ans. L'âge moyen au décès ne cesse d'augmenter depuis cinquante ans. Il est passé de 72 ans pour les femmes décédées en 1967 à 83 ans pour celles décédées en 2017, et de 64 à 76 ans pour les hommes sur la même période. Depuis 1967, le nombre de décès de nouveau-nés a été divisé par six.
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Where do people feel closest to those they have lost? This article explores how continuing bonds with a deceased person can be rooted in a particular place or places. Some conceptual resources are sketched, namely continuing bonds, place attachment, ancestral places, home, reminder theory, and loss of place. The authors use these concepts to analyze interview material with seven Swedes and five Britons who often thought warmly of the deceased as residing in a particular place and often performing characteristic actions. The destruction of such a place, by contrast, could create a troubling, haunting absence, complicating the deceased's absent-presence.
.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 (70â€“89 years (OR 1.91, 95% CI 1.73 to 2.10) and 90â€“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.
BACKGROUND: Trial and registry data have reported mortality rates and causes of death in patients with left ventricular assist devices (LVADs); however, a more granular description is needed of end of life, including location of death and quality of life (QOL), to better guide expectations and care.
METHODS: To identify where patients with an LVAD died, characterize QOL before death, and cause of death over time, we evaluated patients in the Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) implanted with a continuous-flow LVAD.
RESULTS: From 18,733 patients implanted with an LVAD during the period 2008 to 2016, 4,916 patients were known to have died, of whom 98% had a recorded location of death. Overall, 76.9% died in the hospital, with progressively more patients dying outside of the hospital further post-LVAD implant: <1 month, 2.3%; 1 to 12 months, and 16.8%; and >12 months, 37.4%. In a multivariable analysis, increased age (RR (risk ratio) 1.06, 95% confidence interval [CI] 1.02 to 1.12, p = 0.01) and destination therapy indication (RR 1.15, 95% CI 1.03 to 1.28, p = 0.01) increased the likelihood of dying outside the hospital. Comparing 3 months post-implant with 6 months before death in a subset of patients, QOL remained clinically stable (EQ-5D Visual Analog Scale [mean ± SD]: 68.3 ± 22.2 to 66.7 ± 21.7, p = 0.11; KCCQ: 61.0 ± 22.2 to 57.8 ± 23.2, p = 0.003). The most common cause of death <1 month post-implant was multiple-organ failure (20.4%) and at >1 month post-implant it was neurologic dysfunction (28.2%).
CONCLUSIONS: Most patients with an LVAD died in the hospital. QOL remained stable months before death and causes of death were varied, but increasingly dominated by stroke. By understanding death with an LVAD in place, clinicians are in a better position to educate patients and caregivers about what to expect and provide to support tailored to patient and caregiver needs.
BACKGROUND: One-quarter of all cancer deaths in Sweden occur in hospitals. If the place of death affects the quality of end-of-life (EOL) is largely unknown.
METHODS: This population-based, retrospective study included all adults cancer deaths reported to the Swedish Register of Palliative Care in 2011â€“2013 (N = 41,729). Hospital deaths were compared to deaths occurring in general or specialised palliative care, or in nursing homes with respect to care quality indicators in the last week of life. Odds ratios (OR) with 95% confidence intervals (CI) were calculated with specialised palliative home care as reference.
RESULTS: Preferred place of death was unknown for 63% of hospitalised patients and consistent with the actual place of death in 25% compared to 97% in palliative home care. Hospitalised patients were less likely to be informed when death was imminent (OR: 0.3; CI: 0.28-0.33) as were their families (OR: 0.51; CI: 0.46-0.57). Validated screening tools were less often used in hospitals for assessment of pain (OR: 0.32; CI: 0.30-0.34) or other symptoms (OR: 0.31; CI: 0.28-0.34) despite similar levels of EOL symptoms. Prescriptions of as needed drugs against anxiety (OR: 0.27; CI: 0.24-0.30), nausea (OR: 0.19; CI: 0.17-0.21), or pulmonary secretions (OR: 0.29; CI: 0.26-0.32) were less prevalent in hospitals. Bereavement support was offered after 57% of hospital deaths compared to 87-97% in palliative care units and 72% in nursing homes.
CONCLUSIONS: Dying in hospital was associated with inferior end-of-life care quality among cancer patients in Sweden.
BACKGROUND: Older black and Latino Americans are more likely than white Americans to die in the hospital. Whether ethnic differences in expectation of death account for this disparity is unknown.
OBJECTIVES: To determine whether surviving family members' expectation of death has a differential association with site of death according to race or ethnicity.
METHODS: We conducted an analysis of decedents from the Health and Retirement Study, a nationally representative study of US older adults. Telephone surveys were conducted with family members for 5979 decedents (decedents were 55% were women, 85% white, 9% black, and 6% Latino). The outcome of interest was death in the hospital; the predictor variable was race/ethnicity, and the intervening variable was expectation of death. Covariates included sociodemographics (gender, age, household net worth, educational attainment level, religion) and health factors (chronic conditions, symptoms, health-care utilization).
RESULTS: Decedents' race/ethnicity was statistically related to the expectation of death and death in the hospital. When death was not expected, whites and Latinos were more likely to die in the hospital than when death was expected (49% vs 29% for whites and 55% vs 37% for Latinos; P < .001). There was no difference in site of death according to family's expectation of death among blacks.
CONCLUSION: Expectation of death did not fully account for site of death and played a greater role among whites and Latinos than among black Americans. Discussing prognosis by itself is unlikely to address ethnic disparities. Other factors appear to play an important role as well.
Background: Idiopathic pulmonary fibrosis (IPF) is a progressive and fatal lung disease with an unpredictable course and a median survival of three to four years. This timeline challenges providers to approach diagnosis, oxygen therapy, rehabilitation, transplantation, and end-of-life discussions in limited encounters. There is currently no widely accepted guideline for determining when IPF patients should be referred to palliative care (PC).
Objective: We sought to describe the patient and clinical factors associated with PC referral, as well as its impact on mortality and location of death. We also aimed to examine temporal trends in PC referral in this population.
Materials and Methods: Patient data were retrospectively extracted from the health system repository of our specialty referral center for all new IPF patients evaluated between 2000 and 2016 (n = 828). Exclusion criteria included transplant recipients and patients who did not have IPF.
Results: One hundred twelve (13.5%) IPF patients received formal PC referral. Recipients were older at diagnosis (72 years vs. 69 years, p < 0.001), had higher frequency of Charlson Comorbidity Index =1 (55% vs. 42%, p = 0.011), resided closer to our institution (16 miles vs. 54 miles, p < 0.001), and had a higher number of total outpatient visits (7 vs. 4, p < 0.001). PC was associated with less in-hospital death (44% vs. 60%, p = 0.006) and more in-home and hospice death (56% vs. 40%, p = 0.006).
Conclusions: IPF patients referred to PC were older with more severe comorbidities, resided closer to our specialty referral center, and had more outpatient follow-up. This was associated with more in-home and hospice deaths. The patientâ€“provider relationship and frequency of follow-up visits likely play important roles in the introduction of end-of-life discussions.
Background: Although studies suggest that most people prefer to die at home, not enough is known about place of death patterns by cause of death considering sociodemographic factors. The objective of this study was to determine the place of death in the population and to analyze the sociodemographic variables and causes of death associated with home as the place of death.
Methods: Cross-sectional population-based study. All death certificate data on the residents in Spain aged 15 or over who died in Spain between 2012 and 2015 were included. We employed multinomial logistic regression to explore the relation between place of death, sociodemographic variables and cause of death classified according to the International Classification of Diseases, 10th revision, and to conditions needing palliative care.
Results: Over half of all deaths occurred in hospital (57.4%), representing double the frequency of deaths that occurred at home. All the sociodemographic variables (sex, educational level, urbanization level, marital status, age and country of birth) were associated with place of death, although age presented the strongest association. Cause of death was the main predictor with heart disease, neurodegenerative disease, Alzheimer's disease, dementia and senility accounting for the highest percentages of home deaths.
Conclusions: Most people die in hospital. Cause of death presented a stronger association with place of death than sociodemographic variables; of these latter, age, urbanization level and marital status were the main predictors. These results will prove useful in planning end-of-life care that is more closely tailored to people's circumstances and needs.
BACKGROUND: Little is known about the place of death of patients with cancer in Eastern Mediterranean countries including Egypt, where palliative care is underdeveloped. Identifying the preferred place of death (PPoD) is important for the development of appropriate palliative care models in these countries.
OBJECTIVES:: To know the PPoD of Egyptian patients with incurable cancer and their family caregivers (FCGs) and to determine the factors that may impact their preferences.
METHODS:: An observational cross-sectional study that included 301 dyads of patients with incurable cancer and one of their FCGs. A questionnaire was designed to collect data about the characteristics of patients and FCGs as well as their preferences.
RESULTS: The majority of dyads (272/301, 90.4%) answered the PPoD question. Home was the PPoD in 93% of patients and 90.1% of FCGs ( P = .218). The congruence between patients' and FCGs' PPoD was 92.7% (κ = 0.526). In multivariate analysis, poorer performance status (Eastern Cooperative Oncology Group 3 or 4) and full employment of FCGs associated significantly with patients' preference to die in hospital (odds ratio [OR] = 3.015 [95% confidence interval [CI]: 1.004-9.054], P = .049 and OR = 4.402 [95% CI: 1.561-12.417], P = .005, respectively), while poorer performance status and nonreferral to the palliative medicine unit were associated with FCGs' preference of hospital death (OR = 2.705 [95% CI: 1.105-6.626], P = .029 and OR = 2.537 [95% CI: 1.082-5.948], P = .032, respectively).
CONCLUSIONS: The results of the current study suggest that home is the PPoD for the vast majority of Egyptian patients with incurable cancer and their FCGs. Palliative care interventions that promote home death of patients with incurable cancer are needed in Egypt.