Les pages qui suivent reprennent essentiellement les propos des auteurs tenus lors d'une conférence présentée dans le cadre du congrès annuel de l'Association québécoise de soins palliatifs (AQSP), lequel s'est tenu à Montréal le 9 mai 2019. La présentation s'intitulait Repères éthiques pour surmonter les paradoxes dans le soin. Elle s'inscrivait sous l'égide de la Causerie Danielle-Blondeau, dans une volonté d'approfondir des thématiques pertinentes au regard d'enjeux actuels. Nous avons proposé, au moyen de cet atelier post-Causerie, des pistes de réflexion sur le thème de la temporalité et des soins palliatifs.
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Entrer dans un service de réanimation pédiatrique, c'est aller "dedans". Là-bas, on est dedans ou dehors, pas de nuance, pas d'entre-deux... a priori. De l'extérieur, les événements peuvent paraître tranchés, les décisions assurées. On parle en termes de réussite oou d'échec, de vie ou de mort.
Proposer de l'art-thérapie en soins palliatifs, c'est amener le malade à vivre une aventure créative qui le place dans un autre rapport à la vie. Cette "aventure" permet de changer son rapport au temps qui reste, d'un temps subi vers un temps choisi. On observe une modification du rapport à soi, en passant de la personne malade vers la personne en création. Enfin, une transformation du rapport aux soignants et aux proches peut s'esquisser.
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
Despite UK national guidance on care after death, it is clear that the bereaved family can experience distress while waiting for the patient's death to be verified. This distress can escalate if there is a delay in verification. Anecdotally, such delays particularly occur out of hours and in community settings. Verification of death is a clinical task and an act of care whereby the identity of the person and death is confirmed. In addition, the subsequent providers of care to the deceased, such as families, mortuary teams, funeral directors and cremation services, have their health and safety protected by the provision of pertinent patient-specific information, for instance, infection risk and implantable devices, within the bounds of confidentiality. During this time, the bereaved family may also receive emotional support and information from the skilled clinician. Registered Nurse Verification of Expected Adult Death (RNVoEAD) guidance and associated competencies have recently been developed to ensure that the registered nurses involved in the patient's care can feel confident about their responsibilities and competent in the process of verifying death. It is hoped that this guidance will help to avoid delays that may cause additional distress to grieving families. This article sets out the rationale for the guidance, as well as discussing outstanding concerns and proposals for future considerations.
Background: Use of inpatient palliative care (IPC) in advanced cancer patients represents a well-established guideline recommendation. A recent analysis demonstrated that genitourinary (GU) cancer patients benefited of IPC at the second lowest rate within the four examined primaries, namely lung, breast, colorectal, and GU. Based on this observation, we examined temporal trends and predictors of IPC use in metastatic prostate cancer patients receiving critical care therapies (CCT).
Materials and methods: We identified mPCa patients receiving CCT within the Nationwide Inpatient Sample database (2004–2015). IPC use rates were evaluated using univariable estimated annual percentage changes analyses. Multivariable logistic regression (MLR) models were used after adjustment for clustering at hospital level.
Results: Of 4168 mPCa patients receiving CCT, 449 (11.3%) received IPC. IPC use increased from 1.2 to 22.3% (EAPC: +19.6%, p < 0.001). After stratification according to regions, race, and teaching status, the highest increase of IPC use was recorded in the South (from 0 to 25.4 %, EAPC: +27.6%), in Caucasians (from 1.5 to 24.4 %, EAPC: +19.8%; p < 0.001) and in teaching hospitals (from 0.9 to 26.2 %, EAPC: +19.6%; p < 0.001). In MLR models, teaching status (Odds ratio [OR]: 1.74, p < 0.001) and contemporary year interval (OR: 4.63, p < 0.001) were associated with higher IPC rates. Conversely, African American race (OR: 0.66, p < 0.001) and primary diagnosis of GU disorders (OR: 0.49, p < 0.001) and gastrointestinal (GI) disorders at admission (OR: 0.61, p = 0.02) were associated with lower IPC rates.
Conclusions: IPC use rate in mPCa patients receiving CCT sharply increased between 2004 and 2015. The highest increase of IPC use across time was recorded in the South, in Caucasian race, and in teaching hospitals. African-American race and nonteaching status were identified as independent predictors of lower IPC use and represent targets for efforts aimed at improving IPC delivery in mPCa patients receiving CCT.
Dans cette enquête ethnographique, l'auteure donne la parole aux détenus en fin de vie pour interroger l'expérience de la maladie grave et le sens de la punition. L'analyse du soin, de la mort et de la peine fondée sur des observations et des entretiens menés auprès des détenus et des professionnels de la surveillance et du soin font émerger deux dimensions fondamentales : l'espace et le temps.
BACKGROUND: Patients with cancer often require acute hospitalizations, many of which are unplanned. These hospitalizations have been shown to increase in frequency near the end of life. The American College of Physicians recommends that goals-of-care (GOC) discussions be initiated early for metastatic cancers. We hypothesized that discussing GOC during hospitalization could help reduce readmissions. Our aim was to examine the association between the timing of GOC discussion, length of hospital stay, and the time to readmission.
METHODS: We conducted a retrospective review of medical records of patients with stage IV cancers hospitalized between August 2017 and July 2018. We recorded timing of GOC discussion, use of palliative care services, and hospital readmissions within 90 days. 2 tests were used to identify independent associations with GOC discussion, and logistic regression was used to examine association with readmission within 90 days.
RESULTS: Of all study patients (N = 241), 40.6% were female, 46% (n = 112) had a GOC discussion, and 34% (n = 82) had a palliative care consultation. Having a palliative care consult and being admitted to critical care were independently associated with having a GOC discussion. Early timing of GOC discussion was inversely associated with admission to critical care units (P < .05). Thirty-eight percent (n = 92) had unplanned hospital readmission within 90 days. Having a GOC discussion was independently associated with a reduction in the odds of an unplanned hospital readmission within 90 days by 79% (odds ratio = 0.21, 95% confidence interval: 0.12-0.37).
CONCLUSION: Among hospitalized patients with stage IV cancer, performing an early GOC discussion has an important association with lower hospital readmission rates and increased rates of goal-congruent patient care.
La fin de vie est devenue un enjeu important pour les EHPAD. Il est donc nécessaire de prendre son temps dans l'accompagnement des personnes en fin de vie, afin d'effectuer une prise en soins de qualité. Ce n'est qu'à ce prix qu'elle pourra atteindre son objectif, et permettre aux soignants d'être dans un idéal de soins.
Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death). In contrast to this tendency to epistemologically split pre- and post-death experiences, we analyse informal caring across two separate qualitative interviews with 15 informal carers in one metropolitan city in Australia-one before and one after the death of the person for whom they cared. In doing so, we focus on accounts of care across dying and bereavement including: the evolving ambivalence of carers' social relations at the end of life and beyond; dying and death as a challenge to the ideal of authenticity; and, the potential for misrecognition and social estrangement in caring relations at the end of life. We draw on social theory addressing the themes of ambivalence, authenticity and recognition to enhance our understanding of caring as a social practice that occurs across dying and bereavement, rather than as structured primarily by the context of one or the other.
Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family’s experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver’s previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines.
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life.
Aim: To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life.
Design: An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (>=7 Numerical Rating Scale 0–10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months.
Setting/participants: people living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics.
Results: A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point.
Conclusion: A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness.
Cet article est le premier d'une série de deux qui abordent l'expérience de la présence d'infirmières en soins palliatifs (SP) dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Dans cette étude qualitative, nous nous sommes intéressées à l'expérience de la présence telle que vécue et comprise par les infirmières en SP au regard des enjeux actuels du travail en SP au Québec. Huit infirmières qui oeuvraient exclusivement dans un service de SP spécialisés ont été rencontrées. Des entretiens semi-structurés ont été conduits avant et après la participation à une intervention de groupe sur le sens et la pleine conscience offerte dans le cadre de la programmation de recherche SATIN II (Fillion et collab., 2017). Cet article se limite au temps 1 de l'étude. Notre analyse phénoménologique-interprétative (Smith et Osborn, 2007) a révélé que les participantes vivaient et comprenaient initialement la présence comme 1) une mise au diapason et 2) une rencontre avec l'autre et 3) d'un besoin de maîtriser le temps. Notre étude a également démontré que l'expérience de la présence peut (re)donner un sens au travail en SP. Finalement, nous avons pu élaborer une définition de la présence qui pourrait faciliter l'enseignement, l'apprentissage et le développement de la présence chez les infirmières de toutes disciplines.
Introduction: « La vie est courte, l’art est long, l’occasion fugitive, l’expérience trompeuse, le jugement difficile. Or, il faut non seulement se montrer soi-même accomplissant son devoir, mais faire aussi que le malade, les assistants et les éléments extérieurs accomplissent le leur ». Dans le contexte des soins palliatifs, le premier aphorisme d’Hippocrate résonne d’une étonnante modernité.
Trois axes de réflexion: Les trois premières affirmations questionnent sur le temps en soins palliatifs. Temps compté lorsque l’annonce déclenche un compte à rebours, temps accordé, partagé, temps de vie, du mourir voire du long mourir ? Comment vivre ce temps perçu comme incertain ? Quand initier le temps de la rencontre qui va mettre en place des soins palliatifs ? Les deux assertions suivantes expriment l’irréductible incertitude de la prise en charge palliative aussi bien en termes de pronostic qu’en termes d’éthique dans une société où les repères traditionnels s’effacent devant des revendications sociétales et la promotion d’une éthique liquide. Enfin la dernière phrase incite les soignants à réfléchir en termes de devoirs et d’engagements, de transdisciplinarité. Promouvoir l’émergence d’une culture palliative reposant sur une démarche « palliactive » : affirmer le refus de l’euthanasie, redéfinir les buts, les missions et les moyens des soins palliatifs dans leur triple dimension de proximité, d’appui et de recours. Plaider pour une mise en place plus précoce des soins palliatifs et non se limiter à l’urgence des fins de vie. Refonder la formation non seulement en termes de contenus mais aussi d’auditoires. Analyser et comprendre les fonctionnements locaux de la prise en charge palliative car il n’existe pas de soins palliatifs génériques mais des organisations et des structures qui sont hétérogènes.
Conclusion: Le premier aphorisme nous invite à réfléchir en termes d’écologie palliative. Cette écologie palliative doit partir d’un constat lucide de la vulnérabilité de notre société, des fragilités et des dépendances d’individus de plus en plus isolés alors même que les moyens accordés restent insuffisants. Si les soins palliatifs ne doivent pas refuser la technique et les alternatives technologiques, ils doivent rester fondés sur l’humain et sur la rencontre entre les personnes.
Gardening has well-established physical, social and emotional benefits for older adults in varied circumstances. In Detroit, Michigan (United States of America), as in many cities, policy makers, funders, researchers, community organisations and residents regard gardening as a means of transforming bodies, persons, communities, cities and broader polities. We draw on ethnographic research conducted during one gardening season with 27 older African Americans in Detroit to foreground the social dimensions of wellbeing in later life and thus develop a more robust and nuanced understanding of gardening's benefits for older adults. Based on anthropological understandings of personhood and kinship, this article expands concepts of wellbeing to include social relations across multiple scales (individual, interpersonal, community, state) and temporalities (of the activity itself, experiences of ageing, city life). Even when performed alone, gardening fosters connections with the past, as gardeners are reminded of deceased loved ones through practices and the plants themselves, and with the future, through engagement with youth and community. Elucidating intimate connections and everyday activities of older African American long-term city residents counters anti-black discourses of ‘revitalisation’. An expansive concept of wellbeing has implications for understanding the generative potential of meaningful social relations in later life and the vitality contributed by older adults living in contexts of structural inequality.
This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers’ coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.
Background and purpose: Introducing palliative care earlier in the disease trajectory has been found to provide better management of physical and psychological suffering. In France, the proportion of cancer patients who receive palliative care is unclear. This study aimed primarily to measure the prevalence of access to inpatient palliative care and associated patient-level factors, and to identify the time between access to palliative care and death. Patients and methods: A nationwide retrospective cohort study using data from the French national health system database (SNDS - Système national des données de santé). All those diagnosed with cancer in 2013 who died between 2013 and 2015 were included. Access to inpatient palliative care was the main outcome. Results: Of the 313,059 patients diagnosed with cancer in 2013 in France, 72,315 (23%) died between 2013 and 2015. Overall, 57% had access to inpatient palliative care. The following groups were the most likely to have access to palliative care: women (adjusted odds ratio, aOR: 1.15; 95% CI: 1.11-1.20), people aged 18-49 (aOR: 1.38; 95% CI: 1.26-1.51), individuals with metastatic cancer (aOR: 2.04; 95% CI: 1.96-2.13), and patients with cancer of the nervous system (aOR: 1.80; 95% CI: 1.62-2.01). The median time between palliative care and death was 29 (interquartile range: 13-67) days. Conclusion: More than half of cancer patients who died within 2 years after diagnosis had access to inpatient palliative care. Access to palliative care occurs late in the disease trajectory, often during the final month of life. Further research and guidelines are warranted to optimize access to early, standardized palliative care.
Background and Purpose: Do-not-resuscitate (DNR) orders are common after stroke, though there are limited data on trends over time. We investigated time trends in DNR orders in a community with a large minority population.
Methods: Cases of ischemic stroke (IS) or intracerebral hemorrhage (ICH) were identified from the BASIC study (Brain Attack Surveillance in Corpus Christi) from June 2007 through October 2016. Cox proportional hazards models were used to assess time to DNR orders, with an interaction term added to allow separate hazard ratios for early (=24 hours) and late (>24 hours) DNR. Stroke type–specific calendar trends were assessed with an interaction term between calendar year (linear) and stroke type.
Results: Two thousand six hundred seventy-two cases were included (ICH, 14%). Mean age was 69, 50% were female, and race-ethnicity was Mexican American (58%), non-Hispanic white (37%), and African American (5%). Overall, 16% had a DNR order during the hospitalization. For ICH, DNR orders (early and late) were stable over the study period. However, early DNR orders became more common over time after ischemic stroke (hazard ratio for 2016 versus 2007: 1.89; 95% CI, 1.06–3.39), with no change over time for late DNR orders after ischemic stroke. Mexican Americans (hazard ratio, 0.65; 95% CI, 0.50–0.86) and African Americans (hazard ratio, 0.17; 95% CI, 0.04–0.71) were less likely than non-Hispanic whites to have early DNR orders, though there were no race-ethnic differences in late DNR orders. There was no change in race-ethnic difference in DNR orders over the time of the study (interaction P>0.60).
Conclusions: Despite revised national guidelines cautioning against early DNR orders in ICH, presence of DNR orders after ICH was stable between 2007 and 2016, with only slight increases in early DNR orders after ischemic stroke. Mexican Americans and African Americans remain less likely than non-Hispanic whites to have early DNR orders after stroke.