Dans cet essai pratique, le gériatre définit la vieillesse avant de présenter des explications scientifiques et sociétales sur les personnes âgées. Il évoque le fait de vieillir chez soi, les nouvelles technologies ou encore la santé tout en délivrant des conseils pour rester serein.
Emergency health services (EHS) have experienced a steady increase in demand from palliative patients accessing 9-1-1 during times of acute crisis, although the majority of these patients do not wish for conveyance to hospital following paramedic treatment. To address this demand, and to provide patients with the right care, the first time, the British Columbia Emergency Health Service (BCEHS) introduced the province’s first Assess, See, Treat and Refer (ASTaR) Clinical Pathway. This alternative model of care is intended to improve patient-oriented care by providing care for patients in their own home and reducing the requirement for conveyance to the emergency department, thus reducing the requirement for hospitalization. Launched in June 2019, the ASTaR Pathway includes the early recognition of patients with palliative needs accessing 9-1-1, the use of secondary triage services and the automatic notification and referral of non-conveyed patients to primary healthcare teams for patient follow-up. The following commentary outlines the early integration of the ASTaR Palliative Clinical Pathway into the BCEHS paramedic approach to palliative patient care.
Should indication for transfusion in paediatric palliative care be based on the child's perspective rather than the biological results? An 8-year-old boy presenting a relapse of a stage IV neuroblastoma received regular blood transfusions. A severe exophtalmia led the doctors to question the transfusion strategy. Over 7.5 months, the child received 56 red blood cell units and 31 platelet units. He was hospitalised 50 times. Indication for blood test and transfusion may be regularly and collegially reassessed. Transfusion needs in a palliative strategy can be as high as in a curative strategy. Practices, benefits but also ethical and public health dimensions should be more studied.
BACKGROUND: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death.
METHODS: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis.
RESULTS: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security.
CONCLUSION: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.
Providing person-centred end-of-life care at home and in care homes during the COVID-19 pandemic has been challenging. These challenges extend beyond the interpersonal communication barriers created by wearing personal protective equipment (PPE) for infection control. Visors and facemasks make it harder to hear soft voice tones or read facial expressions, which are key tools in empathetic communication. Traditional models of care, based on predominantly face-to-face multidisciplinary clinical consultations, have been radically overhauled in the UK and other countries worse affected by the pandemic (Antunes et al, 2020; Costantini et al, 2020). The unprecedented rapid adoption of technology, including video and telehealth consultations, alongside virtual ward rounds and online team meetings, reduces infection risks and may have the advantage of enabling faster access to clinical advice (Powell et al, 2020). However, concerns that health professional home visits would reduce has led to an increased focus on care provision by family members, including, potentially, the administration of end-of-life care medications (Antunes et al, 2020; Johnson et al, 2020). The pandemic has imposed massive stress on care resources, and the changes in healthcare service delivery after COVID-19 look set to be substantial (Antunes et al, 2020; Kasaraneni, 2020). New models of care delivery have also created opportunities for nurses supporting people in community settings to develop their role and skills
Objective: To assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital.
Design: Observational cohort study using linked routinely collected data.
Patients: Children aged 0-25 years who died between 2003 and 2017.
Main outcome measures: Place of death: hospital, hospice, home. Multivariable multinomial logistic regression models.
Results: 39 349 children died: 73% occurred in hospital, 6% in hospice and 16% at home. In the multivariable models compared with dying in a hospital: neonates were less likely, and those aged 1-10 years more likely, than those aged 28 days to <1 year to die in hospice. Children from all ethnic minority groups were significantly less likely to die in hospice, as were those in the most deprived group (RR 0.8, 95% CI 0.7 to 0.9). Those who died from 2008 were more likely than those who died earlier to die in a hospice.Children with cancer (RR 4.4, 95% CI 3.8 to 5.1), neurological (RR 2.0, 95% CI 1.7 to 2.3) or metabolic (RR 3.7, 95% CI 3.0 to 4.6) diagnoses were more likely than those with a congenital diagnosis to die in a hospice.Similar patterns were seen for clinical/demographic factors associated with home versus hospital deaths.
Conclusions: Most children with a life-limiting condition continue to die in the hospital setting. Further research on preferences for place of death is needed especially in children with conditions other than cancer. Paediatric palliative care services should be funded adequately to enable equal access across all settings, diagnostic groups and geographical regions.
As the United States population ages, a higher share of adults is likely to use long-term services and supports. This change increases physicians' need for information about assisted living and residential care (AL/RC) settings, which provide supportive care and housing to older adults. Unlike skilled nursing facilities, states regulate AL/RC settings through varying licensure requirements enforced by state agencies, resulting in differences in the availability of medical and nursing services. Where some settings provide limited skilled nursing care, in others, residents rely on resident care coordinators, or their own physicians to oversee chronic conditions, medications, and treatments. The following narrative review describes key processes of care where physicians may interact with AL/RC operators, staff, and residents, including care planning, managing Alzheimer's disease and related conditions, medication management, and end-of-life planning. Communication and collaboration between physicians and AL/RC operators are a crucial component of care management.
Health care utilization of women with breast cancer (BC) during the last year of life, together with the causes and place of death and associated expenditure have been poorly described. Women treated for BC (2014-2015) with BC as a cause of death in 2015 and covered by the national health insurance general scheme (77% of the population) were identified in the French health data system (n = 6,696, mean age: 68.7 years, SD ± 15). Almost 70% died in short-stay hospitals (SSH), 4% in hospital-at-home (HaH), 9% in Rehab, 5% in skilled nursing homes (SNH) and 12% at home. One-third presented cardiovascular comorbidity. During the last year, 90% were hospitalized at least once in SSH, 25% in Rehab, 13% in HaH and 71% received hospital palliative care (HPC), but only 5% prior to their end-of-life stay. During the last month, 85% of women were admitted at least once to a SSH, 42% via the emergency department, 10% to an ICU, 24% received inpatient chemotherapy and 18% received outpatient chemotherapy. Among the 83% of women who died in hospital, independent factors for HPC use were cardiovascular comorbidity (adjusted odds ratio, aOR: 0.83; 95%CI: 0.72-0.95) and, in the 30 days before death, at least one SNH stay (aOR: 0.52; 95%CI: 0.36-0.76), ICU stay (aOR: 0.36; 95%CI: 0.30-0.43), inpatient chemotherapy (aOR: 0.55; 95%CI: 0.48-0.63), outpatient chemotherapy (aOR: 0.60; 95%CI: 0.51-0.70), death in Rehab (aOR: 1.4; 95%CI: 1.05-1.86) or HAH (aOR: 4.5; 95%CI: 2.47-8.1) vs SSH. Overall mean expenditure reimbursed per woman was €38,734 and €42,209 for those with PC. Women with inpatient or outpatient chemotherapy during the last month had lower rates of HPC, suggesting declining use of HPC before death. This study also indicates SSH-centered management with increased use of HPC in HaH and Rehab units and decreased access to HPC in SNH.
Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews. Content validity assessment, cognitive interviews, and a cross-sectional survey were used to develop and validate the instrument. The study was set within the primary palliative care program in Kerala, India. Subjects: Ten palliative care professionals and 10 caregivers were engaged for the content validity assessment and cognitive interviews, respectively. The cross-sectional survey was conducted among 221 (males = 21) family caregivers in Kollam district, Kerala. The Institutional Ethics Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum reviewed and cleared the study. Measurements: Underlying factors were identified by using principal axis factoring. The corresponding sub-scales and a composite scale were tested for internal consistency, construct validity, reproducibility, floor and ceiling effects, and interpretability. Results: Two factors that explained 29.5% of the variance were extracted. Two sub-scales-consequences of caregiving and lack of financial security-were derived. The final nine-item Likert-type Achutha Menon Centre-Caregiver Burden Inventory (AMC-CBI) had a content validity index of 0.77, Cronbach's alpha of 0.82, and high test-retest reliability ( = 0.87, p < 0.001). Conclusion: The AMC-CBI is a valid and reliable instrument for burden assessment of caregivers of patients served by the home-based palliative care program in Kerala, India.
Background: Rather than early hospice enrollment, most Medicare beneficiaries receive “usual care” in the last months of life, outside of the hospice setting. While care intensity during the last weeks of life has been studied extensively, patterns of symptom management services (SMS) and/or cancer-directed therapies (CDT) received over a 6-month end-of-life period have not.
Methods: This retrospective study used the Surveillance, Epidemiology, and End Results (SEER)–Medicare database to identify decedents diagnosed with lung cancer at age = 66 years between January 2007 and December 2013 who survived = 6 months from diagnosis. Medicare claims identified receipt of SMS and/or CDT. We created monthly indicators for care content (SMS-only, CDT-only, or both; otherwise full-month hospice or inpatient/skilled nursing). Multinomial logistic regression estimated associations between sociodemographics and comorbidity, with care content in the final month.
Results: Between 6 and 1 months before death, full-month hospice and inpatient/skilled nursing increased; CDT decreased from 31.9 to 18.5%; SMS increased from 86.6 to 97.7%. Relative to full-month hospice, the percentage of patients receiving SMS-only was higher for males, unmarried, younger age, and higher comorbidity; the percentage receiving CDT was also higher for males, unmarried, and younger age, but decreased with increasing comorbidity and over calendar time.
Conclusion: Among lung cancer decedents observed in the outpatient, nonhospice setting, SMS receipt increased and was nearly universal as death approached. CDT diminished dramatically over the end-of-life period. Associations between sociodemographic characteristics and care setting suggest differences in care preferences or access barriers. Claims represent an important resource for characterizing end-of-life care patterns..
BACKGROUND: Elderly patients frequently experience deteriorating health after critical illness, which may threaten their independence and predispose them to unplanned hospital readmissions and premature death.
OBJECTIVES: To evaluate the operational feasibility of a 90-day home-based palliative care intervention in multimorbid elderly Veteran survivors of critical illness.
METHODS: A multidisciplinary home-based palliative care intervention was provided for multimorbid elderly veterans who were discharged home after admission to the intensive care unit for sepsis, pneumonia, heart failure, or exacerbation of chronic obstructive lung disease.
RESULTS: Fifteen patients enrolled in the study, 11 (73%) of whom completed all visits; thus the prespecified goal of >70% completion was met. Median (interquartile range [IQR]) age of the patients was 76 (69-87) years. Participants had a median (IQR) of 8 (7-8) concurrent chronic health conditions, were moderately debilitated at baseline, and were all male. The median (IQR) time to the first study visit was 8 (5-12) days. Patients had a median (IQR) of 8 (5-11) in-home visits and 6 (3-7) telephone encounters during the 90-day study period. Nurses spent a median (IQR) cumulative time of 330 (240-585) minutes on home visits and 30 (10-70) minutes on telephone visits. The median (IQR) time per home provider visit was 90 (75-90) minutes. We estimated the median (IQR) cost per patient to be $2321 ($1901-$3331).
CONCLUSION: A comprehensive home-based palliative care intervention is operationally feasible in elderly multi-morbid survivors of critical illness and may result in improved physical functioning and quality of life and fewer unplanned emergency department visits.
CONTEXT: Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life.
OBJECTIVE: To explore patient and caregiver understanding and valuation of "continuity of care" while transitioning from an in-hospital to a home-based palliative care team.
METHODS: Longitudinal qualitative design using semi-structured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio recorded and transcribed verbatim. Data were analyzed using thematic analysis within a post-positivist framework. Thirty-nine participants (18 patients, 7 caregivers and 7 patient-caregiver dyads) were recruited from two acute care hospitals wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care.
RESULTS: Patients had a mean age of 68, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers.
CONCLUSION: Patients' and their caregivers' valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.
Understanding the preferred place of death may assist to organize and deliver palliative health care services. The study aims to assess preference for place of death among cancer patients in receipt of home-based palliative care, and to determine the variables that affect their preference for a home death. A prospective cohort design was carried out from July 2010 to August 2012. Over the course of their palliative care trajectory, a total of 303 family caregivers of cancer patients were interviewed. Multivariate regression analysis was employed to assess the determinants of a preferred home death. The majority (65%) of patients had a preference of home death. The intensity of home-based physician visits and home-based personal support worker (PSW) care promotes a preference for a home death. Married patients, patients receiving post-graduate education and patients with higher Palliative Performance Scale (PPS) scores were more likely to have a preference of home death. Patients reduced the likelihood of preferring a home death when their family caregiver had high burden. This study suggests that the majority of cancer patients have a preference of home death. Health mangers and policy makers have the potential to develop policies that facilitate those preferences.
OBJECTIVE: This study aimed to examine family carers' willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress.
METHOD: Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers' Support Need Assessment Tool.
RESULTS: Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in "dealing with your feelings and worries" and "looking after your own health."
SIGNIFICANCE OF RESULTS: Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals' additional support.
Background: Paramedics commonly face acute crises of patients in palliative care, but their involvement in end-of-life care is not planned systematically.
Aim: To evaluate a protocol for end-of-life care at home including pre-planned integration of paramedics and end-of-life care wards.
Design: Paramedic visits to patients in end-of-life care protocol were retrospectively studied.
Setting/Participants: All of the patients who had registered for the protocol between 1 March 2015 and 28 February 2017 in North Karelia, Finland, were included in this study.
Results: A total of 256 patients were registered for the protocol and 306 visits by paramedic were needed. A need for symptom control (38%) and transportation (29%) were the most common reasons for a visit. Paramedics visited 43% and 70% of the patients in areas with and without 24/7 palliative home care services, respectively (p < 0.001); while 58% of all the visits were done outside of office hours. Problems were resolved at home in 31% of the visits. The patient was transferred to a pre-planned end-of-life care ward and to an emergency department in 48% and 16% of the cases, respectively. More patients died in end-of-life care wards in areas without (54%) than with (33%) 24/7 home care services (p = 0.001).
Conclusions: integration of paramedics into end-of-life care at home is reasonable especially in rural areas without 24/7 palliative care services and outside of office hours. The majority of patients can be managed at home or with the help of an end-of-life care ward without an emergency visit.
BACKGROUND AND OBJECTIVES: This paper explores current concerns and practice related to older people dying alone in Intensive Care Units, care homes, and at home through media discussions during the Covid-19 pandemic and before. It addresses the historically-situated concept of a good death and a bad death and suggests why dying alone, whether completely alone or without significant others physically present, may be considered a bad death.
METHODS: As evidence for collective fears about dying alone, we explored the treatment of these deaths in media using headline examples from the US New York Times and the English Guardian newspaper from the 19th century through Sept. 2020.
RESULTS: A search of the New York Times located 39 articles with either lonely dying or lonely death in the headline. The Guardian had 25 articles with use of the term, but unlike the New York Times, no obituaries were included. Although the deaths profiled were deemed unusual, deaths by suicide were only minimally classed as dying alone. The condition of dying alone is represented as a stigmatised death. Themes addressed: 1) dying alone is a nonnormative event; 2) this death matters; and 3) where people die alone, societies should honour the death and learn from it.
DISCUSSION AND IMPLICATIONS: Contemporary dying involves conditions for which we are unprepared as a society. We seldom address our civic obligations to each other. Few people have discussed their wishes about their preferences in dying and whether and how they want to be accompanied at their death, if possible. This is an invisible constraint of modern healthcare. Because of limited discussions and preparation, these deaths may lead to disenfranchised grief for the mourners. Cultural and societal responses to lonely dying are important in easing the emotional burden of dying alone, helping individuals prepare for this possibility and better integrating death with the life course. Recommendations include inclusion of accompaniment/nonaccompaniment at death as part of advance care planning and mitigation if this condition occurs. It is essential for individuals to find their own still point of acceptance within competing societal narratives of privileging the self in dying alone and the value of social connection.
Twenty-two members of a nursing home took part in a study examining their experiences with and beliefs about unusual end-of-life phenomena (EOLP). Nearly all the staff members had witnessed and/or been told about residents holding on for someone to arrive or for a specific event to occur before dying (95% and 91%, respectively). Other commonly witnessed/reported EOLP included residents having sudden, unexpected moments of lucidity, sensing or feeling the presence of deceased residents, residents' dreaming about deceased relatives, friends or pets, and deathbed visions. More than three-quarters of the staff members regarded EOLP as transpersonal experiences, as comforting to dying residents and their family members, and as part of the dying process. Fourteen staff members described experiences they had had with EOLP in the nursing home. The most frequently described experiences involved the appearance of apparitions. Seventy-seven percent of the staff members expressed an interest in learning more about EOLP.
Background: Dying at home is the most frequent preference of patients with advanced chronic conditions, their caregivers, and the general population. However, most deaths continue to occur in hospitals. The objective of this study was to analyse the socioeconomic inequalities in the place of death in urban areas of Mediterranean cities during the period 2010–2015, and to assess if such inequalities are related to palliative or non-palliative conditions.
Methods: This is a cross-sectional study of the population aged 15 years or over. The response variable was the place of death (home, hospital, residential care). The explanatory variables were: sex, age, marital status, country of birth, basic cause of death coded according to the International Classification of Diseases, 10th revision, and the deprivation level for each census tract based on a deprivation index calculated using 5 socioeconomic indicators. Multinomial logistic regression models were adjusted in order to analyse the association between the place of death and the explanatory variables.
Results: We analysed a total of 60,748 deaths, 58.5% occurred in hospitals, 32.4% at home, and 9.1% in residential care. Death in hospital was 80% more frequent than at home while death in a nursing home was more than 70% lower than at home. All the variables considered were significantly associated with the place of death, except country of birth, which was not significantly associated with death in residential care. In hospital, the deprivation level of the census tract presented a significant association (p < 0.05) so that the probability of death in hospital vs. home increased as the deprivation level increased. The deprivation level was also significantly associated with death in residential care, but there was no clear trend, showing a more complex association pattern. No significant interaction for deprivation level with cause of death (palliative, not palliative) was detected.
Conclusions: The probability of dying in hospital, as compared to dying at home, increases as the socioeconomic deprivation of the urban area of residence rises, both for palliative and non-palliative causes. Further qualitative research is required to explore the needs and preferences of low-income families who have a terminally-ill family member and, in particular, their attitudes towards home-based and hospital-based death.
Background: For people with dementia, burdensome transitions may indicate poorer-quality end-of-life care. Little is known regarding the association between home healthcare (HHC) and these burdensome transitions. We aimed to investigate the impact of HHC on transitions and hospital/intensive care unit (ICU) utilisation nearing the end-of-life for people with dementia at a national level.
Methods: A nested case-control analysis was applied in a retrospective cohort study using a nationwide electronic records database. We included people with new dementia diagnoses who died during 2002–2013 in whole population data from the universal healthcare system in Taiwan. Burdensome transitions were defined as multiple hospitalisations in the last 90 days (early transitions, ET) or any hospitalisation or emergency room visit in the last three days of life (late transitions, LT). People with (cases) and without (controls) burdensome transitions were matched on a ratio of 1:2. We performed conditional logistic regression with stratified analyses to estimate the adjusted odds ratio (OR) and 95% confidence interval (CI) of the risks of transitions.
Results: Among 150,125 people with new dementia diagnoses, 61,399 died during follow-up, and 31.1% had burdensome transitions (50% were early and 50% late). People with ET had the highest frequency of admissions and longer stays in hospital/ICU during their last year of life, while people with LT had fewer hospital/ICU utilisation than people without end-of-life transitions. Receiving HHC was associated with an increased risk of ET (OR = 1.14, 95 % CI: 1.08–1.21) but a decreased risk of LT (OR = 0.89, 95 % CI 0.83–0.94). In the people receiving HHC, however, those who received longer duration (e.g., OR = 0.50, 95 % CI: 0.42–0.60, >365 versus =30 days) or more frequent HHC or HHC delivered closer to the time of death were associated with a remarkably lower risk of ET. Conclusions: HHC has differential effects on early and late transitions. Characteristics of HHC such as better continuity or interdisciplinary coordination may reduce the risk of transitions at the end-of-life. We need further studies to understand the longitudinal effects of HHC and its synergy with palliative care, as well as the key components of HHC that achieve better end-of-life outcomes.
BACKGROUND: Understanding the determinants of the intensity of informal care may assist policy makers in the identification of supports for informal caregivers. Little is known about the utilization of informal care throughout the palliative care trajectory.
AIM: The purpose of this study was to analyze the intensity and determinants of the use of informal care among cancer patients over the palliative care trajectory.
DESIGN: This was a longitudinal, prospective cohort design conducted in Canada. Regression analysis using instrumental variables was applied.
SETTING/PARTICIPANTS: From November 2013 to August 2017, a total of 273 caregivers of cancer patients were interviewed biweekly over the course of the care recipient's palliative care trajectory. The outcome was the number of hours of informal care provided by unpaid caregivers, that is, hours of informal care.
RESULTS: The number of hours of informal care increased as patients approached death. Home-based nursing care complemented, and hence, increased the provision of informal care. Patients living alone and caregivers who were employed were associated with the provision of fewer hours of informal care. Spousal caregivers provided more hours of informal care. Patient's age, sex, and marital status, and caregiver's age, sex, marital status, and education were associated with the number of hours of informal care.
CONCLUSIONS: The intensity of informal care was determined by predisposing, enabling, and needs-based factors. This study provides a reference for the planning and targeting of supports for the provision of informal care.