"Papa, Maman, Faustine, ne vous inquiétez pas pour moi, je n'ai pas peur. Prenez soin de vous. Je vous aime." Ces mots sont ceux d'Emilie. Elle les écrit lorsqu'elle apprend qu'après deux années de combat contre le cancer, plus aucun traitement ne peut prolonger sa vie. A travers ces quelques mots, elle donne une leçon de vie à sa famille et à ses proches : elle fait le choix d'être heureuse pendant le peu de temps qui lui reste à vivre.
Elle souhaite partager son enjouement, son courage et sa force avec ceux qui l'ont toujours aimée et soutenue. Jusqu'où ira-t-elle dans le combat qu'elle mène contre la maladie ? Comment vivra-t-elle ses derniers instants ? Ses proches réussiront-ils à accepter la situation et à surmonter cette douloureuse épreuve ?
OBJECTIVE: Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers' perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers' perceptions of a good resident death.
METHOD: This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death.
RESULTS: Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers' perceptions of a good resident death.
SIGNIFICANCE OF RESULTS: The findings of this study suggest that the critical role staff in LTC play in supporting caregivers' perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers' perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers' perceptions that residents were at peace when they died.
PURPOSE: Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care.
METHODS: The "Care of the Dying Evaluation" (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin, allocating values between 0 (low quality) and 4 (high quality). The total score (0-104) is divided into subscales which indicate support/time given by doctors/nurses, spiritual/emotional support, information/decision-making, environment, information about the dying process, symptoms, and support at the actual time of death/afterwards. Next-of-kin of patients with an expected death in specialized palliative care units and other wards in two university hospitals between April 2016 and March 2017 were included.
RESULTS: Most of the 237 analyzed CODE-GER questionnaires were completed by the patient's spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3-276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25-104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process.
CONCLUSION: The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed.
During an epidemic, almost all healthcare facilities restrict the visiting of patients to prevent disease transmission. For hospices with terminally ill patients, the trade-off between compassion and infection control becomes a difficult decision. This study aimed to survey the changes in visiting policy for all 76 hospice wards in Taiwan during the COVID-19 pandemic in March 2020. The altered visiting policies were assessed by the number of visitors per patient allowed at one time, the daily number of visiting slots, the number of hours open daily, and requisites for hospice ward entry. The differences in visiting policies between hospice wards and ordinary wards were also investigated. Data were collected by reviewing the official website of each hospital and were supplemented by phone calls in cases where no information was posted on the website. One quarter (n = 20) of hospice wards had different visiting policies to those of ordinary wards in the same hospital. Only one hospice ward operated an open policy, and in contrast, nine (11.8%) stopped visits entirely. Among the 67 hospice wards that allowed visiting, at most, two visitors at one time per patient were allowed in 46 (68.6%), one visiting time daily was allowed in 32 (47.8%), one hour of visiting per day was allowed in 29 (43.3%), and checking of identity and travel history was carried out in 12 wards (17.9%). During the COVID-19 pandemic, nearly all hospice wards in Taiwan changed their visiting policies, but the degree of restriction varied. Further studies could measure the impacts of visiting policy changes on patients and healthcare professionals.
La souffrance est une entité universelle, multidimensionnelle, mais aussi unique et personnelle, paradoxalement sous-diagnostiquée, alors qu’elle est omniprésente dans notre pratique en milieu hospitalier. Le but de cet article est de proposer au lecteur quelques pistes pour l’exploration et l’identification de la souffrance des proches de patients en situation palliative, et surtout quelques outils d’accompagnement et de soutien.
Dr. Wakam: I’m 5 hours into my ICU shift at a community hospital in Detroit when the results of another arterial blood gas return. My patient has been hospitalized for 3 days and is Covid-19–positive. Over the past 12 hours, his treatment has progressed from intubation, to prone positioning on 100% fractional inspired oxygen, to medically induced paralysis, and finally to bilevel ventilation. The results from the arterial blood gas are dismal: pH 7.19, pCO2 70.1, pO2 63.7, HCO3 26.0. He has already experienced episodes of profound hypoxia when we try to rotate him into a supine position, and his heart has begun to show signs of strain, with periods of atrial fibrillation with rapid ventricular response and nonsustained runs of ventricular tachycardia. A request to transfer the patient for extracorporeal membrane oxygenation (ECMO) is denied. It’s 11 p.m., and I’m worried that my patient won’t survive until morning.
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Simon allait souvent chez sa voisine Simone qui le gardait lorsque ses parents étaient absents. Simone est morte d'un arrêt du coeur. Dans l'appartement de Simone, Simon va découvrir les secrets que renferme la théière à voeux remplie de petits papiers écrits par Simon et Simone.
Vieux Jules est un très très vieux monsieur qui a perdu la mémoire des noms (même le sien), des choses, des personnes. Pour l'aider, ses proches trouvent un stratagème pour faire revenir à la surface tout ce qui a disparu.
C'est un très joli album par le graphisme et par le texte parfois en vers. Il est facilement compréhensible et accessible aux jeunes enfants.
AIM: This project has two aims: 1) What do relatives to brought in dead describe as helpful and supportive care when they arrive at the emergency department to see and say goodbye to a deceased? 2) What do nurses describe as good nursing practice for brought in dead persons and their relatives and what may hinder or facilitate this practice in an emergency setting?.
DESIGN: A qualitative study within the methodology Interpretive Description.
METHODS: Data will be collected through three data sources: Individual interviews with relatives to brought in dead persons, participant observations of relatives to brought in dead persons during their presence in the emergency department and focus group interviews with emergency nurses.
DISCUSSION: Brought in dead persons and their relatives are received and cared for in emergency departments by emergency nurses. Knowledge of how to render care for the relatives to brought in dead persons in an acute setting including what skills and competences this require of the nurses is warranted. We need to explore, describe and comprehend the experiences of both the relatives and the nurses in order to point out potential areas of improvement.
IMPACT: This paper is a protocol of an Interpretive Description study offering insight into considerations and reflections in designing the study.
BACKGROUND: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important.
AIM: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care.
METHODS: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test.
RESULTS: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation.
CONCLUSIONS: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.
OBJECTIVES: To assess knowledge and attitudes about do not resuscitate (DNR) among patients and their relatives visiting outpatient clinics at King Abdulaziz University Hospital (KAUH), Jeddah, Kingdom of Saudi Arabia.
METHODS: A cross-sectional study conducted between March and April 2018 with a self-administered questionnaire among patients and their relatives visiting outpatient clinics at KAUH. A systematic random selection of individuals every other day.
RESULTS: The questionnaire was filled by 400 participants. Fifty-four percent were patients' relatives, and approximately 60% were female. Out of 105 (26.3%) who were familiar with DNR term, 44.8% chose the correct definition, 5.2% had previous experience with the DNR term, and 34.3% of them had DNR-related knowledge from social media. Out of the 400 participants, 169 (42.3%) disagreed with DNR. The majority of responders did not know if there is DNR policy or fatwa (a legal opinion on the point of Islamic law).
CONCLUSION: There is a lack of knowledge regarding DNR among participants.
Depuis l'Oregon Death with Dignity Act adopté en 1997, la dépénalisation de l'euthanasie aux Pays-Bas en 2001, puis en Belgique l'année suivante, de plus en plus de personnes demandent l'euthanasie ou en considèrent la possibilité.
Sur l'un des murs de la chambre d'hôpital est accrochée une reproduction des Tournesols de Vincent Van Gogh... Une fenêtre pour s'échapper du difficile tête-à-tête avec la maladie et la mort. Manuel s'est battu avec courage pendant près d'un an contre un cancer qui le ronge. Après une rémission pleine d'espoir, il est de nouveau hospitalisé. Seule devant l'issue fatale de la maladie, Gabrielle, son épouse, fait alors appel à deux de leurs meilleurs amis qui accompagneront Manuel dans ses derniers jours de vie.
Ce récit humaniste détaille au jour le jour les sentiments et les questions qui se posent face à l'agonie d'un être cher : comment échanger et se comporter avec lui ? Il aborde également les difficultés de communication avec l'institution hospitalière et revendique le droit à mourir dans la dignité. Où commence et où finit l'obstination à maintenir un malade en vie ?
BACKGROUND: The length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care.
METHODS: This is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes.
RESULTS: The next of kin's experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple's life situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person's vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin.
CONCLUSIONS: The findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person's health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin.
TRIAL REGISTRATION: NCT02708498, 15 March 2016.
Background: Non-Hispanic black and dementia patients receive more invasive and futile treatment at end of life (EOL) relative to others. Little is known about the relationship between race/ethnicity, dementia, and EOL care quality.
Objective: Identify the relationship between race/ethnicity, dementia, and proxy reporters' evaluation of EOL care quality in older adults.
Design: Latent class analysis (LCA) of national survey data.
Setting: 1588 deceased Medicare beneficiaries age 65 and older from the National Health and Aging Trends Study (2011-2016).
Measurements: LCA identified three types of quality EOL care using nine measures of symptom management, quality of healthcare encounters, and dignified treatment. Race and dementia were primary predictors of EOL care quality type. Adjusted models controlled for decedent education, sex, marital status, age, number of illnesses, number of hospitalizations, self-rated health, place of death, hospice involvement, and proxy relationship to decedent and familiarity with care.
Results: Over 20% of proxies report that dying individuals experienced suboptimal EOL care quality, characterized by pain, sadness, poor communication, and inattention to personal care needs. In adjusted analyses, proxies for non-Hispanic black decedents were less likely to provide negative care assessments than proxies for non-Hispanic white decedents (adjusted odds ratio [AOR]: 0.58; 95% confidence interval [CI]: 0.40-0.86). Proxies for decedents with dementia were less likely to provide negative assessments than proxies for decedents without dementia (AOR: 0.70; 95% CI: 0.51-0.97).
Implications: Efforts to improve EOL care quality are needed. More positive EOL care quality assessments for non-Hispanic Black and dementia decedents appear counterintuitive given research demonstrating that these groups of individuals are likely to have received suboptimal EOL care. Because caregiver expectations for care may differ by decedent race and dementia status, research is needed to explore the role of caregiver expectations for EOL care to explain these paradoxical findings.
Introduction: Bereavement support is an integral element of palliative care. Emerging evidence stipulates that bereavement support should be reserved for those most at risk of poor outcomes. While this evidence makes identifying those at risk of experiencing a complex bereavement a necessary first step, it has been difficult to arrive at a consensus as to whom that should be.
Aim: To explore whether palliative care in-patients with advanced disease are concerned about the bereavement needs of others and, if so, is it their next-of-kin.
Design: A qualitative study using semi-structured interviews, and thematic analysis using a constant comparative method.
Setting/participants: Patients identified by their physicians as being aware of their limited prognosis (n = 19) in a specialist palliative care service in Sydney, Australia.
Findings: Three key themes emerged: 1) Families considered close and supportive may not require bereavement follow-up; 2) Families with previous significant losses or who have more complex lives are perceived by patients as having greater risk; and 3) Asking palliative care patients about whom they are most concerned in their network after their death is difficult but possible.
Conclusions: There are potentially people in the palliative patients’ networks who may be in need of bereavement support, but who are unlikely to be informed about available bereavement services. New strategies are needed to identify people who may benefit from bereavement support.
Aide-soignante dans un service de médecine polyvalente avec lits identifiés soins palliatifs, j'ai, au cours de mon exercice professionnel, été confrontée à une situation qui m'a particulièrement marquée, touchée.
En effet j'ai accompagné une personne que je connaissais déjà dans un cadre privé. Une relation particulière avec cette patiente s'est instaurée dès son arrivée à l'hôpital et a influencé ma posture professionnelle.
Cette situation, point de départ de ce mémoire réflexif, m'a conduit à poser la problématique suivante : "en quoi une relation privilégiée avec une patiente dans un contexte de soins palliatifs influence la posture professionnelle".
Je me suis intéressée aux concepts d'accompagnement, du prendre soin, de la relation soignant-soigné et de la posture professionnnelle.
Au travers de ce mémoire, j'ai pu constater que la relation soignant soigné est riche d'enseignements et que la quête de la juste proximité à l'autre n'est jamais terminée, elle se situe au centre d'ajustements permanents, parce-que chaque personne est unique.
With mounting empirical evidence that interpersonal closeness and conflict with the deceased prior to death are significant predictors of grief reactions following loss, accurate empirical examination of these two constructs is of high importance. Despite the utility of the Quality of Relationships Inventory (QRI) in numerous domains of research, the original instrument was not constructed with a predeath, mourner–decedent relationship in mind. Therefore, this study clarified the factor structure of a modified QRI focusing on major dimensions of the predeath relationship with the deceased—dynamics that could have strong implications for the survivor’s bereavement trajectory. An exploratory factor analysis of 386 bereaved adults revealed two salient factors, deemed closeness and conflict. These results suggest that the modified bereavement version of the QRI, designated the Quality of Relationships Inventory–Bereavement version, is well positioned to advance research in thanatology, with possible limitations noted in the range of relationships to which it is applicable.
La mort met souvent mal à l'aise. Celle d'un enfant, encore plus. Face au deuil périnatal et à la douleur des parents, les proches se sentent souvent démunis et ne savent pas quoi dire. L'écart se creuse, les mots manquent... et les parents souffrent en silence. Si bien qu'au moment où les parents ont le plus besoin de soutien, ils en reçoivent souvent le moins. Pour sortir de cette dynamique et créer des ponts, le livre s'adresse à la fois :
- Aux proches (famille, amis, collègues) : vous trouverez quinze clés pour mieux comprendre les parents endeuillés, ainsi que des outils pratiques pour dépasser la gêne de ne pas savoir quoi dire. Vous trouverez aussi des suggestions pour vous manifester auprès des parents et leur offrir le meilleur de vous-mêmes.
- Et aux parents du bébé décédé : vous trouverez des pistes pour identifier vos besoins du moment et vous pourrez vous inspirer de nombreux témoignages d'autres couples endeuillés pour vous autoriser à faire des demandes et à recevoir de l'aide.
Au coeur du livre, se trouvent aussi plus de 130 idées concrètes de soutien. Que ce soit au niveau logistique, émotionnel ou symbolique, chacun pourra choissir ce qui lui parle le plus en fonction de sa personnalité et de son parcours. Car contrairement à l'idée reçue, dans ces moments-là, il y a en fait beaucoup de choses que l'on peut dire ou faire.
Lorsqu’on accompagne une personne arrivant en fin de vie, qui souffre d’un Alzheimer, ou se retrouve en soins palliatifs, comment anticiper le deuil tout en respectant la personne ? Comment accompagner le mourant en lui apportant le soutien qu’il attend ? Comment accompagner un proche en fin de vie ? Comment traverser un deuil ? Comment accepter la séparation ?
Autant de questions auxquelles cet ouvrage tente de répondre.