Experiencing and enduring patient distress: the distress of palliative care patients and its emotional impact on physicians in training.

BACKGROUND: The extreme vulnerability experienced by patients in palliative care may result in significant distress. These patients require appropriate care while not pathologizing their natural distress. Given the challenges of caring for people experiencing significant distress, it is important to understand what professionals in training may feel when caring for patients in palliative care. Therefore, the aim of this study was to explore how professionals in training feel when confronted with the distress of patients undergoing palliative care. METHODS: A qualitative study employing interpretative phenomenological analysis was conducted. In 2022, 11 physicians in training were interviewed about their experiences with distressed patients due to palliative care. The interviews were conducted via video conference. The students participated in the national palliative care cross-training and were in their final year of residency training. RESULTS: The interviews revealed the following five themes: feelings of powerlessness, duty to act, difficulty in building a relationship, feeling insecure about oneself, and creating a space for listening and relating. All participants felt powerless in front of their patient's distress. Numerous defense mechanisms were identified that made the relationship with the patient difficult. Four participants described being able to create a space for listening and relating to their patients. CONCLUSIONS: A minority of students could establish a quality relationship with their distressed patients. Two concepts, interprofessional education and the patient-centered approach, were identified and could be developed in training.

Platelet transfusions in haematologic malignancies in the last six months of life.

BACKGROUND AND OBJECTIVES: Practices in end-of-life platelet transfusions in haematologic malignancies are variable. Our aim was to describe the platelet transfusion burden and parameters linked to this indication in such a setting and thereby contribute to defining optimal practices. MATERIALS AND METHODS: From July 2015 to December 2016, all consecutive deceased adult patients with a haematologic malignancy receiving a platelet transfusion in the last 6 months of their life from the Etablissement Français du Sang Bourgogne Franche-Comté were included retrospectively. The outcome criteria were changes in the number of platelet transfusions, percent platelet recovery, platelet transfusion interval, reported bleeding with its grade and recipient adverse events in the last 6 months of life. RESULTS: Among the 1125 patients monitored, 119 were included in our study. Bleeding prophylaxis (versus treatment) was the reason for 55% of transfusions. 18% of platelet concentrates (n = 1999) were transfused during the last two weeks of life. As death approached, the transfusion and haemorrhage burden increased (P < 0·0001 in both cases), whereas platelet recovery and transfusion interval decreased (P = 0·02 in both cases). Recipient adverse events were rare (0·6%) and of minor severity. CONCLUSION: In end-of-life transfused patients with haematologic malignancies, approaching death is associated with an increased number of platelet transfusions and bleeding events, while platelet recovery and transfusion intervals are reduced. Such findings, together with further evaluations, may contribute to informing best practices for these patients.

Quelle démarche méthodologique afin d'aboutir à une offre pertinente de soins palliatifs à Mayotte ?

OBJECTIVE: The department of Mayotte is lagging far behind in terms of access to palliative care. We present the methodological approach for assessing the palliative care needs of the population, which led us to make a proposal for a care offer adapted to the local context. METHOD: The main principles of a public health methodology for health needs assessment were followed. The researchers carried out an overall analysis of the situation based on several axes: bibliographical research, collection of quantitative data, qualitative study, interviews with local experts and institutional decision-makers. A summary report of the results was presented to those working in the field at the end of the study in order to support proposals for the creation of a suitable palliative care offer. RESULTS: In view of the paucity of epidemiological data, the qualitative study was decisive in assessing needs. Exchanges with institutional decision-makers enabled a deeper understanding of local specificities and improved the relationship between local actors leading to the emergence of a co-construction process. In December 2019, a palliative care offer resulting from the study’s proposals was funded. CONCLUSION: Our methodology was based on regular exchanges in the field and enabled us to encourage the emergence of a decisive element for the success of the project: the support of carers and institutional decision-makers. This co-construction between the partners allowed interactivity between the different categories of actors involved and reinforced the quality of the work and the emergence of a collective intelligence (study SP Mayotte).

Recherche sur la fin de vie, la nécessité d'un consensus : premiers résultats.

During the past 15 years, in France, like in many European countries, the attention paid to patients at the end of their lives has continued to grow. But in the meantime, only a few researchers have managed to collect reliable data on End-of-Life Care and to implement scientific studies describing the reality of these situations. This difficulty is due in particular to the lack of a recognized and operational definition of the end of life.Our objective is to explore the possibility of achieving consensus around a definition based on the isolated elements in the literature.A Delphi consensus approach has been conducted. A “Delphi” approach allows consensus to be achieved without the influence of leadership effects.The population of this study is the group of care providers who are members of the Société Française d’Accompagnement et de Soins Palliatifs (SFAP), whether they are professionals or volunteers. An electronic survey asked for the degree of approval of individuals for each of the proposed definitions on a Lickert scale. The first round of Delphi was proposed at the end of 2019 among palliative care actors. 1463 people responded to this questionnaire in one month. Two types of definition seem to dominate the other proposals. The first is related to an estimate of life expectancy: life expectancy of less than 15 days and less than one month. The second emerging definition is related to the evolution of a pathology: based on the fact of being in advanced or terminal phase of an incurable pathology.These results confirm that the end-of-life period can be seen from two points of view, the first in relation to the time left to live and the other in relation of the terminal phase of the disease which calls for a less clearly defined time.These two definitions are based on different approaches, one temporal and the other disease-centered. An alternative definition emerges from this study and will be tested in the second round of Delphi.

Impact on Health-Related Quality of Life of Parenteral Nutrition for Patients with Advanced Cancer Cachexia: Results from a Randomized Controlled Trial.

BACKGROUND: Malnutrition worsens health-related quality of life (HRQoL) and the prognosis of patients with advanced cancer. This study aimed to assess the clinical benefits of parenteral nutrition (PN) over oral feeding (OF) for patients with advanced cancer cachexia and without intestinal impairment. MATERIAL AND METHODS: In this prospective multicentric randomized controlled study, patients with advanced cancer and malnutrition were randomly assigned to optimized nutritional care with or without supplemental PN. Zelen's method was used for randomization to facilitate inclusions. Nutritional and performance status and HRQoL using the European Organization for Research and Treatment of Cancer QLQ-C15-PAL questionnaire were evaluated at baseline and monthly until death. Primary endpoint was HRQoL deterioration-free survival (DFS) defined as a definitive deterioration of ≥10 points compared with baseline, or death. RESULTS: Among the 148 randomized patients, 48 patients were in the experimental arm with PN, 63 patients were in the control arm with OF only, and 37 patients were not included because of early withdrawal or refused consent. In an intent to treat analysis, there was no difference in HRQoL DFS between the PN arm or OF arm for the three targeted dimensions: global health (hazard ratio [HR], 1.31; 95% confidence interval [CI], 0.88-1.94; p = .18), physical functioning (HR, 1.58; 95% CI, 1.06-2.35; p = .024), and fatigue (HR, 1.19; 95% CI, 0.80-1.77; p = .40); there was a negative trend for overall survival among patients in the PN arm. In as treated analysis, serious adverse events (mainly infectious) were more frequent in the PN arm than in the OF arm (p = .01). CONCLUSION: PN improved neither HRQoL nor survival and induced more serious adverse events than OF among patients with advanced cancer and malnutrition. Clinical trial identification number. NCT02151214 IMPLICATIONS FOR PRACTICE: This clinical trial showed that parenteral nutrition improved neither quality of life nor survival and generated more serious adverse events than oral feeding only among patients with advanced cancer cachexia and no intestinal impairment. Parenteral nutrition should not be prescribed for patients with advanced cancer, cachexia, and no intestinal failure when life expectancy is shorter than 3 months. Further studies are needed to assess the useful period with a potential benefit of artificial nutrition for patients with advanced cancer.

COVID-19 outbreak: organisation of a geriatric assessment and coordination unit. A French example.

Older people are particularly affected by the COVID-19 outbreak because of their vulnerability as well as the complexity of health organisations, particularly in the often-compartmentalised interactions between community, hospital and nursing home actors. In this endemic situation, with massive flows of patients requiring holistic management including specific and intensive care, the appropriate assessment of each patient's level of care and the organisation of specific networks is essential. To that end, we propose here a territorial organisation of health care, favouring communication between all actors. This organisation of care is based on three key points: To use the basis of territorial organisation of health by facilitating the link between hospital settings and geriatric sectors at the regional level.To connect private, medico-social and hospital actors through a dedicated centralised unit for evaluation, geriatric coordination of care and decision support. A geriatrician coordinates this multidisciplinary unit. It includes an emergency room doctor, a supervisor from the medical regulation centre (Centre 15), an infectious disease physician, a medical hygienist and a palliative care specialist.To organise an ad hoc follow-up channel, including the necessary resources for the different levels of care required, according to the resources of the territorial network, and the creation of a specific COVID geriatric palliative care service. This organisation meets the urgent health needs of all stakeholders, facilitating its deployment and allows the sustainable implementation of a coordinated geriatric management dynamic between the stakeholders on the territory.

Impact du dispositif Lisp sur le déploiement de la culture et de la démarche palliatives.

INTRODUCTION: Access to palliative care is a right recognized in France since 1999. Various care systems are present in the field of palliative care, and in particular the Identified Palliative Care Beds (LISP), which aim to promote the deployment of the palliative culture and approach in care services regularly confronted with palliative situations and whose organizational reference framework is mentioned in DHOS/O2/2008/99 of 25 March 2008. Although the system is widely deployed in hospitals, there is still some uncertainty about the actual functioning of LISPs and the impact of the system on these initial objectives. The LISP study thus proposes to question the contribution of LISPs to the deployment of culture and palliative care in healthcare services. METHOD: The investigation method used for this qualitative survey is based on semi-directive interviews in 6 establishments in the Bourgogne Franche Comté region. RESULTS: At the end of our study, we note that in half of the services surveyed, the system has clearly contributed to the gradual emergence of a palliative culture and approach. CONCLUSION: A number of measures necessary for its efficiency are emerging, which could give rise to avenues of reflection articulated in 3 axes: making the system less abstract, in particular by identifying LISPs at the level of services and strengthening the information transmitted with regard to the system, developing support by EMSPs, and questioning the means to be allocated to enable efficient operation.

Timing of palliative care needs reporting and aggressiveness of care near the end of life in metastatic lung cancer: A national registry-based study.

BACKGROUND: Early integration of palliative care for patients with metastatic lung cancer improves their quality of life and survival and reduces the aggressiveness of care near the end of life. This study examined the association between the timing of palliative care needs reporting and the aggressiveness of end-of-life care. METHODS: This retrospective cohort study used the French National Hospital Registry to identify all hospitalized adults (≥20 years old) who died of metastatic lung cancer in France between 2010 and 2013. It compared the use of care and treatments near the end of life as a function of the timing of the first reporting of palliative care needs. The use of chemotherapy and the use of invasive ventilation were defined as primary outcomes. Propensity score weighting was used to control for potential confounders. RESULTS: Among a total of 64,950 deceased patients with metastatic lung cancer, the reporting of palliative care needs was characterized as timely (from 91 to 31 days before death) for 26.3%, late (from 30 to 8 days before death) for 31.5%, and very late (from 7 to 0 days before death) for 12.8%. Palliative care needs were not reported for 19,106 patients (29.4%). Patients with timely reporting of palliative care needs had the earliest and most progressive decrease in the use of anticancer therapy. The use of invasive ventilation also increased with a delay in palliative care needs reporting. CONCLUSIONS: There is a clear association between the timing of palliative care needs reporting and the aggressiveness of care near the end of life. Cancer 2018;124:3044-51. © 2018 American Cancer Society.

Barriers to end-of-life discussions among hematologists: A qualitative study.

BACKGROUND: Integrated palliative care is correlated with earlier end-of-life discussion and improved quality of life. Patients with haematological malignancies are far less likely to receive care from specialist palliative or hospice services compared to other cancers. AIM: The main goal of this study was to determine hematologists' barriers to end-of-life discussions when potentially fatal hematological malignancies recur. DESIGN: Qualitative grounded theory study using individual interviews. SETTING/PARTICIPANTS: Hematologists ( n = 10) from four hematology units were asked about their relationships with their patients and their attitudes toward prognosis and end-of-life discussions at the time of recurrence. RESULTS: As long as there are potential treatments, hematologists fear that end-of-life discussions may undermine their relationship and the patient's trust. Because of their own representations, hematologists have great difficulty opening up to their patients' end-of-life wishes. When prognosis is uncertain, negative outcome, that is, death, is not fully anticipated. Persistent hope silences the threat of death. CONCLUSION: This study reveals some of the barriers clinicians face in initiating early discussion about palliative care or patients' end-of-life care plan. These difficulties may explain why early palliative care is little integrated into the hematology care model.

Prevalence and characteristics of prisoners requiring end-of-life care: A prospective national survey.

BACKGROUND: Ensuring adequate end-of-life care for prisoners is a critical issue. In France, data investigating the impact of laws allowing release of seriously ill prisoners are lacking. AIM: To assess the number and characteristics of prisoners requiring palliative care in French prisons. DESIGN: A prospective, national survey collecting data over a 3-month period. SETTING/PARTICIPANTS: All healthcare units ( n = 190) providing care for prisoners in France. The prison population was 66,698 during the study period. Data collection concerned prisoners requiring end-of-life care, that is, with serious, advanced, progressive, or terminal illness and life expectancy <1 year. RESULTS: Estimated annual prevalence of ill prisoners requiring end-of-life care was 15.2 (confidence interval: 12.5-18.3) per 10,000 prisoners. The observed number of prisoners requiring palliative care ( n = 50) was twice as high as the expected age- and sex-standardized number based on the general population and similar to the expected number among persons 10 years older in the free community. In all, 41 of 44 (93%) of identified ill prisoners were eligible for temporary or permanent compassionate release, according to their practitioner. Only 33 of 48 (68%) of ill prisoners requested suspension or reduction in their sentence on medical grounds; half (16/33) received a positive answer. CONCLUSION: The proportion of prisoners requiring palliative care is higher than expected in the general population. The general frailty and co-existing conditions of prisoners before incarceration and the acceleration of these phenomena in prison could explain this increase in end-of-life situations among prisoners.

Use of hospital palliative care according to the place of death and disease one year before death in 2013: a French national observational study.

BACKGROUND: Only limited data are available concerning the diseases managed before death and hospital palliative care (HPC) use according to place of death in France. We therefore conducted an observational study based on administrative health data in a large population to identify the diseases treated one year before death in 2013, the place of stay with or without hospital palliative care, and the place of death. METHODS: French health insurance general scheme beneficiaries were identified in the National Health data Information System (Snds) with a selection of information. Diseases were identified by algorithms from reimbursement data recorded in the Snds database. RESULTS: 347,253 people were included in this study (61% of all people who died in France). Place of death was short stay hospital for 51%, Rehab (7%), hospital at home (3%), skilled nursing home (13%) and other (26%). Chronic diseases managed in 2013 before death were cardiovascular/neurovascular diseases (56%), cancers (42%), and neurological and degenerative diseases (25%). During the year before death, 84% of people were hospitalized at least once, and 29% had received HPC. HPC was used by 52% of cancer patients (lung cancer: 62%; prostate cancer: 41%). In the absence of cancer, the use of HPC varied according to the disease: acute stroke: 24%, heart failure: 17%, dementia: 17%, multiple sclerosis: 23%. CONCLUSIONS: Health administrative data can refine the knowledge of the care pathway prior to death and the HPC utilisation and can be useful to evaluate heath policies and improve monitoring and assessment of HPC use.

Estimating the need for palliative care at the population level: A cross-national study in 12 countries.

BACKGROUND: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed. AIM: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries. DESIGN: This is a cross-sectional study using death certificate data. SETTING/PARTICIPANTS: All adults (⩾18 years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand ( N = 4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively. RESULTS: The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%-58%) than in the United States (41%-76%) and varied from 31%-83% in Hungary to 42%-79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs. CONCLUSION: These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level.

Palliative sedation challenging the professional competency of health care providers and staff: a qualitative focus group and personal written narrative study.

BACKGROUND: Despite recent advances in palliative medicine, sedating a terminally ill patient is regarded as an indispensable treatment to manage unbearable suffering. With the prospect of widespread use of palliative sedation, the feelings and representations of health care providers and staff (carers) regarding sedation must be carefully explored if we are to gain a better understanding of its impact and potential pitfalls. The objective of the study was to provide a comprehensive description of the opinions of carers about the use of sedation practices in palliative care units (PCU), which have become a focus of public attention following changes in legislation. METHODS: Data were collected using a qualitative study involving multi-professional focus groups with health care providers and staff as well as personal narratives written by physicians and paramedical staff. A total of 35 medical and paramedical providers volunteered to participate in focus group discussions in three Palliative Care Units in two French hospitals and to write personal narratives. RESULTS: Health care provider and staff opinions had to do with their professional stance and competencies when using midazolam and practicing sedation in palliative care. They expressed uncertainty regarding three aspects of the comprehensive care: biomedical rigour of diagnosis and therapeutics, quality of the patient/provider relationship and care to be provided. Focusing on the sedative effect of midazolam and continuous sedation until death, the interviewed health care providers examined the basics of their professional competency as well as the key role played by the health care team in terms of providing support and minimizing workplace suffering. Nurses were subject to the greatest misgivings about their work when they were called upon to sedate patients. CONCLUSIONS: The uncertainty experienced by the carers with regard to the medical, psychosocial and ethical justification for sedation is a source of psychological burden and moral distress, and it has proved to be a major source of suffering in the workplace. Lastly, the study shows the uncertainty can have the positive effect of prompting the care team to devise ways to deal with it.

Discussing end-of-life issues in nursing homes: a nationwide study in France.

BACKGROUND: discussing end-of-life issues with nursing home residents and their relatives is needed to ensure patient-centred care near the end of life. OBJECTIVES: this study aimed to estimate the frequency of nursing home physicians discussing end-of-life issues with residents and their relatives and to investigate how discussing end-of-life issues was associated with care outcomes in the last month of life. METHODS: post-mortem cohort study in a nationwide, representative sample of 78 nursing home facilities in France. Residents who died from non-sudden causes between 1 October 2013 and 31 May 2014 in these facilities were included (n = 674). RESULTS: end-of-life issues were discussed with at most 21.7% of the residents who died during the study period. In one-third of the situations (32.8%), no discussion about end-of-life-related topics ever occurred, either with the resident or with the relatives. Older people with severe dementia were less likely to have discussed more than three of the six end-of-life topics we investigated, compared with residents without dementia (OR = 0.17, 95% CI = 0.08-0.22). In the last month of life, discussing more than three end-of-life issues with the residents or their relatives was significantly associated with reduced odds of dying in a hospital facility (adjusted OR = 0.51, 95% CI = 0.33-0.79) and with a higher likelihood of withdrawing potentially futile life-prolonging treatments (adjusted OR = 2.37, 95% CI = 1.72-3.29). CONCLUSION: during the last months of life, discussions about end-of-life issues occurred with only a minority of nursing home decedents, although these discussions may improve end-of-life care outcomes.

International comparison of death place for suicide; a population-level eight country death certificate study.

PURPOSE: The places of death for people who died of suicide were compared across eight countries and socio-demographic factors associated with home suicide deaths identified. METHODS: Death certificate data were analyzed; using multivariable binary logistic regression to determine associations. RESULTS: National suicide death rates ranged from 1.4 % (Mexico) to 6.4 % (South Korea). The proportion of suicide deaths occurring at home was high, ranging from 29.9 % (South Korea) to 65.8 % (Belgium). Being older, female, widowed/separated, highly educated and living in an urban area were risk factors for home suicide. CONCLUSIONS: Home suicide deaths need specific attention in prevention programs.

Variation in the place of death among nursing home residents in France.

OBJECTIVES: recent studies have reported that hospitals have become a common place of death for nursing home residents. This study aimed to (i) measure variations in the proportion of in-hospital deaths across regions after adjustment for facility-level characteristics and (ii) identify environmental risk factors that might explain these variations in France. DESIGN: a cross-sectional retrospective survey was conducted in 2013. SETTING AND PARTICIPANTS: coordinating physicians in 3,705 nursing homes in France. MEASUREMENTS: a regression model was used to construct risk-adjusted rates of in-hospital deaths considering the facilities' characteristics. At the regional level, the outcome was defined as the difference between the observed rate of in-hospital deaths and the expected risk-adjusted rate. Values exceeding zero indicated rates that exceeded the national predicted rate of in-hospital deaths and thus highlighted regions in which the risk-adjusted probability for nursing home residents to die in a hospital was greater than average. RESULTS: among 70,119 nursing home decedents, 25.4% (n = 17,789) died in hospitals. The characteristics of the facilities had a significant influence on the proportion of in-hospital deaths among the nursing home decedents. However, after adjustment for these facility-level risk factors, the proportion of nursing homes that reported worse-than-average outcomes showed significant variation (range 26.0-79.6%). At the regional level, both the rate of acute hospital beds and the rate of general practitioners were found to be strongly correlated with the probability of reporting worse-than-average outcomes (P < 0.001). CONCLUSION: our study demonstrates the existence of major differences across regions in France and highlights the need for targeted interventions regarding end-of-life care in nursing home facilities.

Is shared decision-making vanishing at the end-of-life? A descriptive and qualitative study of advanced cancer patients' involvement in specific therapies decision-making.

BACKGROUND: Little is known about what is at stake at a subjective level for the oncologists and the advanced cancer patients when they face the question whether to continue, limit or stop specific therapies. We studied (1) the frequency of such questioning, and (2) subjective determinants of the decision-making process from the physicians' and the patients' perspectives. METHODS: (1) All hospitalized patients were screened during 1 week in oncology and/or hematology units of five institutions. We included those with advanced cancer for whom a questioning about the pursuit, the limitation or the withholding of specific therapies (QST) was raised. (2) Qualitative design was based on in-depth interviews. RESULTS: In conventional units, 12.8 % of cancer patients (26 out of 202) were concerned by a QST during the study period. Interviews were conducted with all physicians and 21 advanced cancer patients. The timing of this questioning occurred most frequently as physicians estimated life expectancy between 15 days and 3 months. Faced with the most frequent dilemma (uncertain risk-benefit balance), physicians showed different ways of involving patients. The first two were called the "no choice" models: 1) trying to resolve the dilemma via a technical answer or a "wait-and-see" posture, instead of involving the patients in the questioning and the thinking; and 2), giving a "last minute" choice to the patients, leaving to them the responsibility of the decision. In a third model, they engaged early in shared reflections and dialogue about uncertainties and limits with patients, proxies and care teams. These schematic trends influenced patients' attitudes towards uncertainty and limits, as they were influenced by these ones. Individual and systemic barriers to a shared questioning were pointed out by physicians and patients. CONCLUSIONS: This study indicate to what extent these difficult decisions are related to physicians' and patients' respective and mutually influenced abilities to deal with and share about uncertainties and limits, throughout the disease trajectory. These insights may help physicians, patients and policy makers to enrich their understanding of underestimated and sensitive key issues of the decision-making process.