scholarly journals End-of-Life Practices in France under the Claeys-Leonetti Law: Report of Three Cases in the Oncology Unit

2016 ◽  
Vol 9 (3) ◽  
pp. 650-654 ◽  
Author(s):  
Alexandre de Nonneville ◽  
Anthony Marin ◽  
Theo Chabal ◽  
Veronique Tuzzolino ◽  
Marie Fichaux ◽  
...  

On February 2, 2016, the French government enacted the Claeys-Leonetti law introducing the right to deep and continuous sedation and forbade euthanasia for end-of-life patients. This article reports the first descriptions of this kind of intervention at the final stage of life of 3 patients and highlights the need of patient-centered goals and the importance of close collaboration between the patient, family, and medical and paramedical team to achieve a higher quality of final palliative care.

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.


2014 ◽  
Vol 6 (2) ◽  
pp. 174-196
Author(s):  
Gerhard Marschütz

Abstract To die in dignity is often understood as a personal right to independently determine the time and the way of one’s own death, assuming dignity as a quality of life that wouldn’t exist in serious illness or in the final stage of life. On the contrary and from a traditional point of view dignity belongs to a person’s being that can never get lost and hence has to be respected also at the end of life. For that reason, from a catholic point of view a voluntary euthanasia as a deliberate killing of a person is definitely rejected. However, a so-called ‘aggressive medical treatment’ must be avoided because it doesn’t accept the actual situation of death and only causes a pointless extension of life. Nevertheless, the palliative care is essential to provide people even in their final lifetime with quality of life and to help them with the personal acceptance of death.


2018 ◽  
Vol 36 (1) ◽  
pp. 76-88 ◽  
Author(s):  
Dawon Baik ◽  
Hwayoung Cho ◽  
Ruth M. Masterson Creber

Background: Shared decision making (SDM) is a key attribute of patient-centered care, which empowers palliative care patients to be able to make optimal medical decisions about end-of-life treatments based on their own values and preferences. Aim: The aim of this systematic literature review is to detail and compare interventions supporting SDM over the last 10 years (January 2008 to December 2017) and to analyze patient/caregiver outcomes at the end of life. Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, Embase, and Cochrane Library were searched with key search terms: SDM, decision aid, decision support, palliative care, and hospice care. The Mixed Methods Appraisal Tool was used to assess the quality of the included studies. Results: The initial search yielded 2705 articles, and 12 studies were included in the final review. The quality of the studies was modest and technology-enabled delivery modes (e.g., video, DVD, web-based tool) were most commonly used. Patient/caregiver knowledge of end-of-life care was the most common primary outcome across studies. The strength of the association between the SDM interventions and patient/caregiver outcomes varied. Conclusion: The findings from the studies that examined the effects of the SDM intervention on patient outcomes were inconsistent, highlighting the need for further SDM intervention studies among diverse patient populations using consistent measures. Given the availability of health technologies, future studies should focus on developing individual-tailored, technology-enabled interventions to support patient-centered medical decision making.


Praxis ◽  
2021 ◽  
Vol 110 (15) ◽  
pp. 839-844 ◽  
Author(s):  
Fabienne Teike Lüthi ◽  
Mathieu Bernard ◽  
Claudia Gamondi ◽  
Anne-Sylvie Ramelet ◽  
Gian Domenico Borasio

Abstract. Palliative care is frequently associated with the end of life and cancer. However, other patients may need palliative care, and this need may be present earlier in the disease trajectory. It is therefore essential to identify at the right time patients who need palliative care and to distinguish between those in need of general palliative care and those for whom a referral to specialists is required. ID-PALL has been developed as an instrument to support professionals in this identification and to discuss a suitable palliative care project, in order to maintain the best quality of life for patients and their relatives. Recommendations for clinical practice are also proposed to guide professionals after the identification phase.


2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.


2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).


2018 ◽  
Vol 21 (2) ◽  
pp. 62-71
Author(s):  
Henry O’Lawrence ◽  
Rohan Chowlkar

Purpose The purpose of this paper is to determine the cost effectiveness of palliative care on patients in a home health and hospice setting. Secondary data set was utilized to test the hypotheses of this study. Home health care and hospice care services have the potential to avert hospital admissions in patients requiring palliative care, which significantly affects medicare spending. With the aging population, it has become evident that demand of palliative care will increase four-fold. It was determined that current spending on end-of-life care is radically emptying medicare funds and fiscally weakening numerous families who have patients under palliative care during life-threatening illnesses. The study found that a majority of people registering for palliative and hospice care settings are above the age group of 55 years old. Design/methodology/approach Different variables like length of stay, mode of payment and disease diagnosis were used to filter the available data set. Secondary data were utilized to test the hypothesis of this study. There are very few studies on hospice and palliative care services and no study focuses on the cost associated with this care. Since a very large number of the USA, population is turning 65 and over, it is very important to analyze the cost of care for palliative and hospice care. For the purpose of this analysis, data were utilized from the National Home and Hospice Care Survey (NHHCS), which has been conducted periodically by the Centers for Disease Control and Prevention’s National Center for Health Statistics. Descriptive statistics, χ2 tests and t-tests were used to test for statistical significance at the p<0.05 level. Findings The Statistical Package for Social Sciences (SPSS) was utilized for this result. H1 predicted that patients in the age group of 65 years and up have the highest utilization of home and hospice care. This study examined various demographic variables in hospice and home health care which may help to evaluate the cost of care and the modes of payments. This section of the result presents the descriptive analysis of dependent, independent and covariate variables that provide the overall national estimates on differences in use of home and hospice care in various age groups and sex. Research limitations/implications The data set used was from the 2007 NHHCS survey, no data have been collected thereafter, and therefore, gap in data analysis may give inaccurate findings. To compensate for this gap in the data set, recent studies were reviewed which analyzed cost in palliative care in the USA. There has been a lack of evidence to prove the cost savings and improved quality of life in palliative/hospice care. There is a need for new research on the various cost factors affecting palliative care services as well as considering the quality of life. Although, it is evident that palliative care treatment is less expensive as compared to the regular care, since it eliminates the direct hospitalization cost, but there is inadequate research to prove that it improves the quality of life. A detailed research is required considering the additional cost incurred in palliative/hospice care services and a cost-benefit analysis of the same. Practical implications While various studies reporting information applicable to the expenses and effect of family caregiving toward the end-of-life were distinguished, none of the previous research discussed this issue as their central focus. Most studies addressed more extensive financial effect of palliative and end-of-life care, including expenses borne by the patients themselves, the medicinal services framework and safety net providers or beneficent/willful suppliers. This shows a significant hole in the current writing. Social implications With the aging population, it has become evident that demand of palliative/hospice care will increase four-fold. The NHHCS have stopped keeping track of the palliative care requirements after 2007, which has a negative impact on the growing needs. Cost analysis can only be performed by analyzing existing data. This review has recognized a huge niche in the evidence base with respect to the cost cares of giving care and supporting a relative inside a palliative/hospice care setting. Originality/value The study exhibited that cost diminishments in aggressive medications can take care of the expenses of palliative/hospice care services. The issue of evaluating result in such a physically measurable way is complicated by the impalpable nature of large portions of the individual components of outcome. Although physical and mental well-being can be evaluated to a certain degree, it is significantly more difficult to gauge in a quantifiable way, the social and profound measurements of care that help fundamentally to general quality of care.


2021 ◽  
Vol 162 (44) ◽  
pp. 1769-1775
Author(s):  
Orsolya Horváth ◽  
Enikő Földesi ◽  
Katalin Hegedűs

Összefoglaló. A palliatív ellátások korai bevonása az onkológiai betegek ellátásába előnnyel jár mind a beteg életminősége, mind a kezelés színvonala, mind a költséghatékonyság szempontjából. Szükség van egy olyan modellre, mely alapján a megfelelő időben, a megfelelő beteg a megfelelő minőségű palliatív ellátásban részesül. Ebben a közleményben a palliatív ellátás korai integrációjának előnyei, szintjei és a speciális palliatív ellátás fogalmának ismertetése után a leginkább elterjedt beutalási modellek előnyeit és hátrányait mutatjuk be a nemzetközi szakirodalom alapján. A speciális palliatív ellátást igénylő betegek kiszűrésére szolgáló, prognózisalapú modellek hátránya, hogy nincs elég kapacitás az ilyen módon beutalt nagyszámú beteg ellátására, ezért széles körben nem terjedtek el. A tüneteken alapuló modellek sokszor bonyolultak és a mindennapi klinikai gyakorlatban nem használatosak. Az új kutatások alapján egyszerű, gyakorlatias kérdéssorokat alkalmaznak, melyekkel könnyen kiemelhetők, akik profitálnak a speciális palliatív intervencióból. Ezek közül a Yale egyetemi és a PALLIA -10 modellt ismertetjük részletesen. Amennyiben az aktív onkológiai ellátást végzők a megfelelő palliatív beutalási kritériumokat ismerik és alkalmazzák, a betegek időben jutnak a megfelelő komplex kezeléshez anélkül, hogy a palliatív ellátórendszer túlterhelődne. Orv Hetil. 2021; 162(44): 1769–1775. Summary. Early integration of palliative care into the trajectory of cancer care brings advantages into the patients’ quality of life, the level of care and cost-efficiency, too. On the basis of a predefined model, the right patient may receive the right level of palliative care at the right time. Having defined the advantages, the levels of early integration of palliative care and the concept of special palliative care, we also aim to describe the advantages and disadvantages of the most common referral models on the basis of international literature in this article. The drawback of prognosis-based models to identify patients needing special palliative care is the lack of capacity to provide care for the large number of patients so recognised; therefore they have not become widespread. Needs-based models tend to be complicated and thus rarely applied in everyday clinical practice. On the basis of new researches, simple, pragmatic questionnaires are utilised through which the patients who could benefit from special palliative care interventions are easy to identify. Here we give a detailed report of the Yale University and PALLIA-10 models. On condition that appropriate palliative referral criteria are known and applied by active oncology care providers, patients may receive adequate complex care without the palliative care system being overloaded. Orv Hetil. 2021; 162(44): 1769–1775.


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