De quoi et où meurent les Françaises et Français ? Quelle est l’offre sanitaire globale mais aussi plus spécifiquement de soins palliatifs aujourd’hui en France ? Quel est le profil des patients pris en charge dans les unités de soins palliatifs ? Quelle est la part des personnes âgées de 75 ans et plus dans les statistiques de mortalité ? Quelles sont leurs particularités ? Observe-t-on des différences géographiques concernant toutes ces données ?
Cette deuxième édition de l'Atlas national a vocation à répondre à ces multiples questions pour aider le lecteur à appréhender les enjeux et les réalités de l’accompagnement de la fin de vie et de la place des soins palliatifs en France aujourd’hui. Il rassemble des données démographiques, sanitaires qui sont analysées le plus finement possible pour mettre en lumière les spécificités départementales en termes d’offre sanitaire mais aussi de besoins des patients dans leurs trajectoires de fin de vie.
Introduction : Cicely Saunders a introduit la notion de « total pain » dans la médecine palliative. Dans cette approche, l’attention aux besoins spirituels – dont la religion – en fait partie intégrante. Le médecin généraliste (MG) tient un rôle important dans les soins palliatifs jusqu’au décès à domicile. Cette étude s’intéresse à l’abord de la religion par les MG avec leurs patients.
Méthode : Douze entretiens semi-directifs ont été menés auprès de médecins généralistes (MG) exerçant dans les Hautes-Pyrénées. Le guide d’entretien a été construit suite à l’élaboration d’un protocole de validation qui a aussi servi à l’analyse des données. L’émergence de nouveaux indicateurs ont été intégrés dans cette grille.
Résultats : Les besoins spirituels et religieux sont peu cités par les MG parmi les besoins de la personne malade, contrairement aux besoins physiques et psychologiques. L’abord de la religion par les MG est relié aux « non-dits » et à la gêne ressentie. Certains sollicitent une personne ressource. L’inexpérience, la crainte de prosélytisme, le manque de temps et la laïcité sont d’autres facteurs cités. Le fait que la demande vienne du patient et les convictions personnelles du MG influencent l’abord de ce sujet. Les aspects religieux les plus cités sont la vie après la mort, les rites funéraires et les représentants du culte.
Conclusion : Dans cette étude qualitative, il apparaît que les besoins spirituels et religieux sont peu évoqués par les MG bien qu’ils considèrent comme important le respect des convictions des patients, l’empathie et le rôle privilégié qu’ils tiennent. Les causes en sont multiples et sont ancrées dans la relation médecin–malade.
Introduction : Les personnes atteintes de cancer et vivant à domicile sont de plus en plus en nombreuses. Les proches aidants sont des acteurs importants auprès de la personne malade. Ils sont confrontés, à ce titre, aux douleurs cancéreuses sévères de leur proche. La douleur est l’un des symptômes les plus fréquents en cancérologie, souvent insuffisamment soulagée. L’objectif de cette étude était de mieux connaître la perception qu’ont les proches aidants de leur rôle à domicile, particulièrement vis-à-vis de la douleur liée au cancer et de ses traitements.
Méthode : Une étude qualitative a été menée au moyen d’entretiens semi-dirigés auprès de proches aidants de patients atteints d’un cancer en phase palliative spécifique ou symptomatique et présentant des douleurs nécessitant l’administration d’opioïdes. Les thèmes explorés ont été la communication, l’anticipation, la coordination, l’accompagnement et l’adaptation.
Résultats : Douze entretiens ont été réalisés. La plupart des proches aidants disent se rendre disponibles pour le confort du patient, la surveillance des symptômes et l’usage des opioïdes. Ces derniers sont sources de nombreux questionnements. En outre, les proches aidants se sentent responsables de tout faire et de s’organiser pour faire face à la douleur. Enfin, ils se considèrent comme les mieux placés pour soutenir au quotidien le patient, tant pour les aspects pratiques que socio-affectifs. Les professionnels de santé, en particulier les infirmiers libéraux, sont des éléments importants sur lesquels ils peuvent s’appuyer.
Discussion : L’enjeu pour les proches aidants est de conforter leur rôle dans le soulagement des douleurs du malade à domicile. Communiquer, coordonner les différents acteurs et participer aux prises de décision sont les moyens d’y parvenir mais ces fonctions sont variables dans le temps. Il convient de trouver l’équilibre dans la charge qui leur incombe. Cela invite les professionnels à être attentifs à leurs besoins en proposant une aide flexible et adaptée à chaque situation.
BACKGROUND: Patient access to medicines at home during the last year of life is critical for symptom control, but is thought to be problematic. Little is known about healthcare professionals' practices in supporting timely medicines access and what influences their effectiveness. The purpose of the study was to evaluate health professionals' medicines access practices, perceived effectiveness and influencing factors.
METHODS: On-line questionnaire survey of health care professionals (General Practitioners, Community Pharmacists, community-based Clinical Nurse Specialists and Community Nurses) delivering end-of-life care in primary and community care settings in England. Quantitative data were analysed using descriptive statistics.
RESULTS: One thousand three hundred twenty-seven responses were received. All health professional groups are engaged in supporting access to prescriptions, using a number of different methods. GPs remain a predominant route for patients to access new prescriptions in working hours. However, nurses and, increasingly, primary care-based pharmacists are also actively contributing. However, only 42% (160) of Clinical Nurse Specialists and 27% (27) of Community Nurses were trained as prescribers. The majority (58% 142) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Satisfaction with access to shared patient records to facilitate medicines access was low: 39% (507) were either Not At All or only Slightly satisfied. Out-of-hours specialist cover was reported by less than half (49%; 656) and many General Practitioners and pharmacists lacked confidence advising about out-of-hours services. Respondents perceived there would be a significant improvement in pain control if access to medicines was greater. Those with shared records access reported significantly lower pain estimates for their caseload patients.
CONCLUSIONS: Action is required to support a greater number of nurses and pharmacists to prescribe end-of-life medicines. Solutions are also required to enable shared access to patient records across health professional groups. Coverage and awareness of out-of-hours services to access medicines needs to be improved.
Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions.
Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana.
Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points.
Participants: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12).
Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care.
Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.
BACKGROUND: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context.
AIM: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life.
DESIGN: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data.
SETTING/PARTICIPANTS: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness.
RESULTS: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes.
CONCLUSIONS: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.
BACKGROUND: A sense of place (SOP) is defined as the emotional bonds, values, meaning, and symbols attached to a place.
AIMS: To assess SOP of patients with cancer during end-of-life care at home (home-hospice service) versus at a hospital in relation to place of care, social support, and emotional distress.
METHODS: Participants were 150, stage IV, cancer patients with a life expectancy of less than 6 months, as defined by oncological staff, who were not receiving any life-prolonging care. Seventy-five patients received care at home (home-hospice), and the other 75 received care at the oncology department at the hospital, by palliative unit staff. Participants completed the Brief Symptom Inventory anxiety and depression subscales, questionnaires on perceived support and both questionnaires on home SOP and hospital SOP.
RESULTS: Mean scores of emotional distress were similar for patients in home-hospice and at the hospital. Home SOP among individuals receiving care at home was high, and hospital SOP was high among hospitalized individuals. The structural equation model had good fit indexes, showing that each of the SOP variables mediated the association between place of care and emotional distress. Perceived support was associated with lower distress only in the hospital setting.
CONCLUSIONS: The SOP concept is relevant to understanding emotional distress in relation to place of care at end of life. Strengthening SOP in relation to place of care should be considered. As newly introduced concept regarding place of care at the end of life, SOP warrants further research.
BACKGROUND: Many older people wish to die at home. However, there is still a huge gap between the place where older adults wish to die and the place where they, in fact, do die. We aimed to assess the association between each type of long-term care (LTC) services that home-dwelling older individuals utilized at their end of life and place of death.
METHODS: A pooled cross-sectional study at the point of death was used for the analysis. Participants included beneficiaries of long-term care insurance in Japan, aged 65 years and above, who passed away between January 2008 and December 2013, excluding those who died due to external factors and those who were using residential services at their time of death. We conducted a multivariate Poisson regression analysis with robust standard errors adjusting for potential confounders and examined the association between the use of each type of LTC service for home-dwelling recipients, including in-home services, day services, and short-stay services, with the interaction terms being time of death (exposure) and home death (outcome). We calculated the adjusted probability of home deaths for each combination pattern of LTC services for home-dwelling recipients using standard marginalization.
RESULTS: We analyzed 2,035,657 beneficiaries. The use of in-home services, day services, and short-stay services were associated with an increased probability of home deaths; the incident rate ratio (IRR) was 13.40 (with a 95% confidence interval (CI): 13.23-13.57) for in-home services, the IRR was 6.32 (6.19-6.45) for day services, and the IRR was 1.25 (1.16-1.34) for short-stay services. Those who used day or short-stay services with in-home services exhibited a higher probability of home deaths than those who used only day or short-stay services.
CONCLUSIONS: We demonstrated that home-dwelling older persons who used LTC services near end-of-life had a higher probability of home deaths as compared to those who did not. Our findings can clarify the importance of providing and integrating such services to support care recipients who wish to die at home as well as for the benefit of their informal caregivers.
BACKGROUND: Improvement in quality of life (QoL) of patients is one of the most important goals of palliative care, but evaluation of QoL of patients is difficult.
AIM: To evaluate QoL of patients who died at home or in a hospital.
METHODS: We administered the Good Death Inventory (10 core and 8 optional domains) to the bereaved families of patients who died at home or in a hospital. A total of 107 bereaved families undertook a survey.
FINDINGS: If a bereaved family chose 'somewhat agree', 'agree' or 'absolutely agree', the answer was regarded as a 'satisfactory answer'. Regarding the 10 core domains, of patients who died in a hospital, <50% respondents gave a 'satisfactory answer' to three questions, whereas of patients who died at home, >60% of respondents gave a 'satisfactory answer' to seven questions. Regarding the eight optional domains, of patients who died in a hospital, <50% respondents gave a 'satisfactory answer' to five questions, whereas of patients who died at home, >60% of respondents gave a 'satisfactory answer' to four questions.
CONCLUSIONS: QoL of patients who died at home appeared higher than that of those who died in a hospital. Patients prefer to remain at home rather than in a hospital, probably because at home they are surrounded by familiar things and can live according to their usual habits.
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
BACKGROUND: Home is often deemed to be the preferred place of death for most patients. Knowing the factors related to the actualization of a preferred home death may yield evidence to enhance the organization and delivery of healthcare services.
OBJECTIVE: The objectives of this study were to measure the congruence between a preferred and actualized home death among cancer patients in receipt of home-based palliative care in Canada and explore predictors of actualizing a preferred home death.
METHODS: A longitudinal prospective cohort design was conducted. A total of 290 caregivers were interviewed biweekly over the course of patients' palliative care trajectory between July 2010 and August 2012. Cross-tabulations and multivariate analyses were used in the analysis.
RESULTS: Home was the most preferred place of death, and 68% of patients who had voiced a preference for home death had their wish fulfilled. Care context variables, such as living with others and the intensity of home-based nursing visits and hours of care provided by personal support workers (PSW), contributed to actualizing a preferred home death. The intensity of emergency department visits was associated with a lower likelihood of achieving a preferred home death.
CONCLUSIONS: Higher intensity of home-based nursing visits and hours of PSW care contribute to the actualization of a preferred home death.
IMPLICATIONS FOR PRACTICE: This study has implications for policy decision-makers and healthcare managers. Improving and expanding the provision of home-based PSW and nursing services in palliative home care programs may help patients to actualize a preferred home death.
Very little is known about the characteristics of the Medicare beneficiaries receiving hospice at home, defined using the Medicare Healthcare Common Procedure Coding System codes, as a traditional home, an assisted living facility, or a nursing home. A secondary analysis of 2015 Medicare data using regression to describe the characteristics of decedents (n = 675 782) in hospice residing in a traditional home, an assisted living facility, and a nursing home was completed. Results suggest that the proportion of Medicare decedents in hospice with more than 180 lifetime days in hospice was highest among those who resided in an assisted living facility (25.03%) compared with those who resided in a nursing home (18.87%) or in a traditional home (13.04%). Regression findings suggest that, compared with decedents in hospice without dementia who resided in a traditional home, decedents in hospice with a primary diagnosis of dementia were more likely to reside in an assisted living facility (adjusted odds ratio, 2.29; P < .0001) when controlling for other factors. In summary, decedents in hospice who resided in a traditional home have different characteristics than decedents who resided in an assisted living facility or a nursing home. Interdisciplinary providers should consider these differences when managing hospice interventions.
BACKGROUND/AIM: Previous studies have shown discrepancies between patient's desired and actual death place. As planning of family support and involvement of palliative home care teams seem to improve the chance to meet patients preferences, geographical availability of specialized palliative home care could influence place of death.
PATIENTS AND METHODS: Data of patients diagnosed and deceased between January 2011 until December 2014 with lung, brain, colorectal, breast and prostate cancer was collected from Swedish national registers and multiple regression analyses were performed.
RESULTS: Patients with lung, brain, colorectal, and prostate cancer who resided in rural municipalities had a higher likelihood of dying at home than dying in hospital settings, compared to those who lived in urban areas.
CONCLUSION: Patients in Sweden, with the exception of breast cancer patients, have a higher likelihood of home death than inpatient hospital death when residing in rural areas compared to when residing in urban areas.
L’offre de soins à domicile a beaucoup évolué ces vingt dernières années pour répondre aux besoins de la population et pour s’adapter aux contraintes du système de santé. Après les réseaux de santé, les maisons des réseaux, puis les plateformes territoriales d’appui, de nouveaux dispositifs d’aide à la coordination permettent aux soignants du domicile d’organiser la prise en charge des personnes en situation de santé complexe. Illustration avec un réseau de soins palliatifs en Normandie.
BACKGROUND: The Cancer Home-Life Intervention showed no significant effects, and examination of the processes affecting or inhibiting outcomes is relevant.
AIM: To evaluate the Cancer Home-Life Intervention for its processes of implementation, mechanisms of impact and contextual factors.
DESIGN: Process evaluation conducted alongside the randomised controlled trial, using quantitative and qualitative methods (ClinicalTrials.gov NCT02356627). The Cancer Home-Life Intervention is a tailored, occupational therapy-based programme.
SETTING/PARTICIPANTS: This study took place in participants' homes and at hospital. A total of 113 home-dwelling adults (>=18 years) with advanced cancer who had received the Cancer Home-Life Intervention were included, together with five intervention-therapists.
RESULTS: All 113 participants (100%) received a first home visit; 32 participants (26%) received a second visit; and 4 participants (3%) received a third visit. Median number of delivered intervention components were 3 (interquartile range: 2; 4). Identified barriers for effect included unclear decision process for intervention dosage; participants' low expectations; participants' lack of energy; and insufficient time to adopt new strategies. The trial design constituted a barrier as the intervention could only be provided within a specific short period of time and not when relevant. Intervention components working to solve practical everyday problems, enhance enjoyment and increase a sense of safety were perceived as useful.
CONCLUSION: Future interventions can benefit from inclusion criteria closely related to the intervention focus and clear procedures for when to continue, follow-up and terminate intervention. Decisions about dose and timing may benefit from learning theory by taking into account the time and practice needed to acquire new skills.
Delirium occurs frequently at end of life. Palliative care clinical nurse specialists (CNSs) are involved in community palliative care provision. Many patients prefer being cared for at home, yet managing delirium in this setting presents unique challenges, potentially resulting in emergency hospital or hospice admission. We examined the experiences and practice of palliative care CNSs managing delirium in the community; 10 interviews were undertaken. Data were analysed using the framework approach. Challenges to delirium management in the community included limited time with patients, reliance on families and access to medications. Assessment tools were not used routinely; time limited visits and inconsistent retesting were perceived barriers. Management approaches differed depending on CNSs' previous delirium education. Strategies to prevent delirium were not used. Community delirium management presents challenges; support surrounding these could be beneficial. Routine assessment tool use and delirium prevention strategies should be included in further education and research.
Background: Many people with terminal illness prefer to die in home-like settings—including care homes, hospices, or palliative care units—rather than an acute care hospital. Home-based palliative care services can increase the likelihood of death in a community setting, but the provision of these services may increase costs relative to usual care.
Objective: The aim of this study was to estimate the incremental cost per community death for persons enrolled in end-of-life home care in Ontario, Canada, who died between 2011 and 2015.
Methods: Using a population-based cohort of 50,068 older adults, we determined the total cost of care in the last 90 days of life, as well as the incremental cost to achieve an additional community death for persons enrolled in end-of-life home care, in comparison with propensity score–matched individuals under usual care (ie, did not receive home care services in the last 90 days of life).
Results: Recipients of end-of-life home care were nearly 3 times more likely to experience a community death than individuals not receiving home care services, and the incremental cost to achieve an additional community death through the provision of end-of-life home care was CAN$995 (95% confidence interval: -$547 to $2392).
Conclusion: Results suggest that a modest investment in end-of-life home care has the potential to improve the dying experience of community-dwelling older adults by enabling fewer deaths in acute care hospitals.
Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time.
Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data.
Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time.
Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.
The use of home parenteral nutrition (HPN) in patients with incurable cancer remains controversial with significant variation worldwide. We aimed to systematically evaluate the literature from 1960 to 2018 examining the use of HPN in advanced cancer patients for all intestinal failure indications and assess the potential benefits/burdens of HPN in this cohort of patients. The primary end point was survival and secondary end points were quality of life and nutritional/performance status. Meta-analysis was performed with a random effects model, where suitable. Of 493 studies retrieved, 22 met the quality inclusion criteria. Studies were mainly conducted in Western countries (Italy, USA, Canada, Germany), including a total of 3564 patients (mean age 57.8 years). Mean duration for HPN was 5.0 mo. Mean overall survival was 7.3 mo. Patients with improved performance status survived for longer on HPN. Quality of life was sparsely reported though there was no observed negative impact of PN. HPN-related complications were reported in eight studies only and were mainly catheter-related blood stream infections. In conclusion, HPN is used for several indications in advanced cancer, though there is significant heterogeneity of results. Disparities in geographical distribution of the studies may reflect variation in accessing HPN.