L’offre de soins à domicile a beaucoup évolué ces vingt dernières années pour répondre aux besoins de la population et pour s’adapter aux contraintes du système de santé. Après les réseaux de santé, les maisons des réseaux, puis les plateformes territoriales d’appui, de nouveaux dispositifs d’aide à la coordination permettent aux soignants du domicile d’organiser la prise en charge des personnes en situation de santé complexe. Illustration avec un réseau de soins palliatifs en Normandie.
Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited.
Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes.
Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3–9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170–630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included “Learn how to manage, not just lead,” “Negotiate everything before you sign anything,” and “Balance patient volume with scope of practice.”
Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.
OPINION STATEMENT: Palliative care has evolved over the decades from its roots in the hospice movement to a much wider approach in which early intervention further "upstream" in the illness is encouraged to improve quality of life for patients and their families. This new definition has a strong evidence base in cancer trials and is supported by major national and international organizations. However, it has proven difficult to convince patients, the public, and even healthcare providers, of this upstream migration of palliative care, with many continuing to associate palliative care exclusively with end-of-life care. A multitude of definitions now exists, with varying emphasis on early intervention versus end-of-life care. In addition, a new nomenclature has emerged to conceal the end-of-life component of palliative care despite its continued importance, adding further to the confusion. Uncertainty within the specialty about the definition of palliative care will not reassure referring physicians and policymakers about its meaning nor convince them of its importance. Accuracy and clarity in the form of an established definition of palliative care are required to reduce misconceptions, facilitate clinical and academic development, and promote effective communication. This definition should acknowledge both expertise in end-of-life care and its relevance for improving outcomes early in the course of advanced cancer, and should be disseminated widely and practiced consistently.
BACKGROUND: In recent decades, issues related to end-of-life care and advance care planning (ACP) have attracted popular attention. Advance care planning has been broadly discussed as one of the potential solutions to protect a patient's rights, autonomy, and dignity at the end of life. To better understand publishing on this topic, we conducted this study to demonstrate the worldwide research productivity, trends, and citations of ACP in the past 3 decades by bibliometric analysis.
METHODS: Articles published on ACP were retrieved from the Web of Science Core Collection database, and the subject terms included "advance directive," or "advance care planning."
RESULTS: Overall, 2126 publications on ACP were retrieved until January 22, 2019. North America, Western Europe, and Australia were the most productive regions. The top 15 countries published 95.9% of the total number of articles. The United States accounted for approximately three-fifths (61.0%) of all publications. When adjusted for population size, Australia had the highest number of articles per million persons (6.64), followed by the Netherlands (6.14) and Belgium (4.61). The most productive authors were Sudore (n = 37), Deliens (n = 29), and Green (n = 24).
CONCLUSIONS: The current study revealed that research in terms of publications on ACP has rapidly increased over the past 3 decades. Developed countries, especially the United States, were more concerned with the ACP research field than developing countries were.
Depuis quelques années, les soins palliatifs pédiatriques (SPP) s’organisent aussi bien à travers des mesures politiques, avec la création d’équipes spécifiques, qu’à travers des formations centrées sur les particularités en pédiatrie. Nous avons souhaité d’évaluer dans quelles mesures ces évolutions sont reflétées dans les publications référencées sur ce sujet.
L’évolution actuelle des soins palliatifs conduit à plusieurs questionnements, notamment sur leur place et rôle dans le parcours de soins. Le CNSPFV, interpellé sur cette question a choisi de l’investiguer en l’abordant sous l’angle suivant « Des soins palliatifs à la médecine palliative : quels enjeux pour l’avenir ou la mission des soins palliatifs peut-elle / doit-elle se réduire à la question de la fin de vie ? »
Pour apporter des éclairages sur ce questionnement, le CNSPFV a mandaté un groupe d’experts et de praticiens. Le travail présenté dans ce document s’est ainsi attaché à réfléchir aux liens entre soins palliatifs et fin de vie aujourd’hui. Pour cela, il a cherché à comprendre les articulations actuelles entre les soins palliatifs et les différentes spécialités médicales comme par exemple la pédiatrie, la gériatrie ou la cancérologie, en France comme dans d’autres pays ; à explorer ce que les patients attendent des soins palliatifs ; et ce que certaines initiatives citoyennes proposent comme alternatives à l’offre sanitaire existante, en matière d’accompagnement de fin de vie. A l’issue de ces travaux, le groupe propose donc une clarification de différents concepts (soins palliatifs, démarche palliative, médecine palliative, culture palliative) et des axes de travail pour favoriser de meilleures conditions de fin de vie en France.
Among the old and new controversies over brain death, none is more fundamental than whether brain death is equivalent to the biological phenomenon of human death. Here, I defend this equivalency by offering a brief conceptual justification for this view of brain death, a subject that Andrew Huang and I recently analyzed elsewhere in greater detail. My defense of the concept of brain death has evolved since Bernard Gert, Charles Culver, and I first addressed it in 1981, a development that paralleled advances in intensive care unit treatment. The century-old concept of the organism as a whole provides the fundamental justification for the equivalency of brain death and human death. In our technological age, in which increasing numbers of components and systems of an organism can be kept alive, and for longer intervals, the permanent cessation of functioning of the organism as a whole is the phenomenon that best corresponds to its death.
CONTEXT: The World Health Assembly Palliative Care Resolution in 2014 and the inclusion of palliative care within the sustainable development goals raised optimism that palliative care would no longer be a peripheral aspect of global health. However, no funding, accountability measures, or indicators for palliative care development accompanied these policy developments. This risks health actors continuing to prioritize the attainment of better known target-driven aspects of health care.
OBJECTIVES: To explore the attitudes of international palliative care experts regarding how the future development of palliative care can be accelerated.
METHODS: About 16 international palliative care experts were interviewed for their epistemic expertise. Participants were interviewed face to face or via Skype. Interviews were recorded, transcribed nonverbatim, and analyzed using a thematic approach (NVivo).
RESULTS: Participants strongly supported the rollout of national palliative care policies around the world for two reasons: to ensure palliative care attracts national funding streams and to attract global funding for palliative care. The absence of a global indicator for palliative care development was considered a severe impediment to the inclusion of palliative care within global efforts toward universal health care. Advocacy partnerships, using human rights approaches with economic frames, were considered the most effective methods of influencing policymakers.
CONCLUSION: Palliative care represents a value proposition that is not currently being maximized by advocacy. Advocates should consider palliative care developmentally, focusing on key asks for development and consider how palliative care can contribute to other international development priorities, in particular poverty reduction.
CONTEXT: The need for increased use and earlier initiation of palliative home care has been advocated by several international organizations.
OBJECTIVES: To investigate time trends in the use and timing of initiating palliative home care support (PHCS).
METHODS: Observational study using routinely collected population-level databases linked with health claims data for the entire population living at home that died from diseases indicative of palliative care needs in Belgium between 2010 and 2015 (n=230,704). Trends and trends by cause of death and age were measured through changes over time in prevalence of use of PHCS. Rates were standardized for age, sex and cause of death distribution in 2010. The median number of days before death when PHCS was initiated was calculated for each year.
RESULTS: Uptake of PHCS increased from 31.7% to 34.9% between 2010 and 2015. Trends were similar in size for all groups, except for people who died from dementia (smallest increase with 1.9 percent-point). The timing of initiating PHCS advanced from 41 days to 46 days before death, with the smallest increase observed among people who died from dementia (+2.5 days). The proportion of people receiving PHCS only in the last week of life changed from 15.3% to 13.9%.
CONCLUSION: This population-level study found a slight trend towards more and earlier initiation of PHCS between 2010 and 2015. However, uptake of PHCS remained below estimated needs in the population and the proportion of people receiving PHCS very late in life remained stable over time.
'Palliation sedation' is a widely used term to describe the intentional administration of sedatives to reduce a dying person's consciousness to relieve intolerable suffering from refractory symptoms. Research studies generally focus on either 'continuous sedation until death' or 'continuous deep sedation'. It is not always clear whether instances of secondary sedation (i.e. caused by specific symptom management) have been excluded. Continuous deep sedation is controversial because it ends a person's 'biographical life' (the ability to interact meaningfully with other people) and shortens 'biological life'. Ethically, continuous deep sedation is an exceptional last resort measure. Studies suggest that continuous deep sedation has become 'normalized' in some countries and some palliative care services. Of concern is the dissonance between guidelines and practice. At the extreme, there are reports of continuous deep sedation which are best described as non-voluntary (unrequested) euthanasia. Other major concerns relate to its use for solely non-physical (existential) reasons, the under-diagnosis of delirium and its mistreatment, and not appreciating that unresponsiveness is not the same as unconsciousness (unawareness). Ideally, a multiprofessional palliative care team should be involved before proceeding to continuous deep sedation. Good palliative care greatly reduces the need for continuous deep sedation.
La possibilité pour les personnes gravement malades de terminer leur vie à domicile constitue un objectif à atteindre pour le gouvernement français et celui du Québec (plans 2015-2018.fr ; 2015-2020. qc). A cet effet, en 2016, la loi Claeys-Leonetti a été instituée en France (Editeur officiel de la République française, 2016). Au Québec, la loi concernant les soins de fin de vie a été votée en 2014 (Editeur officiel du Québec, 2014). Cette dernière permet aux personnes en fin de vie de demeurer chez elles, si elles le désirent, en disposant de ressources qui améliorent leur qualité de vie tout en réduisant leur vulnérabilité. Toutefois, la réalisation de cet objectif soulève d'importants enjeux comme l'épuisement des proches, la fragilisation du lien social pouvant mener à l'isolement social, et les limites du bénévolat en soins palliatifs. Afin de composer avec ces enjeux, le Québec (Qc) et la France (Fr) sont confrontés à la nécessité de faire évoluer leur modèle de soins palliatifs et d'accompagnement en fin de vie.
In the last few years, important changes have occurred in the clinical and epidemiological characteristics of patients that were admitted to cardiac intensive care units (CICU). Care has shifted from acute coronary syndrome patients towards elderly patients, with a high prevalence of non-ischemic cardiovascular diseases and a high burden of non-cardiovascular comorbid conditions: both increase the susceptibility of patients to developing life-threatening critical conditions. These conditions are associated with a significant symptom burden and mortality rate and an increased length of stay. In this context, palliative care programs, including withholding/withdrawing life support treatments or the deactivation of implanted cardiac devices, are frequently needed, according to the specific guidelines of scientific societies. However, the implementation of these recommendations in clinical practice is still inconsistent. In this review, we analyze the reasons for this gap and the main cultural changes that are required to improve the care of patients with advanced illness.
Les auteurs se sont entretenus avec Régis Aubry, chef de service de soins palliatifs à l'hôpital de Besançon et membre du Comité consultatif national d'éthique (CCNE) depuis 2012. Ensemble, ils évoquent les évolutions médicales, organisationnelles et politiques en lien avec la fin de vie.
Since 2013, Kaiser Permanente Northern California has engaged in a systematic effort to elicit, document, and honor the care preferences of patients as they near the end of life. This is done through its Advanced Steps program, in which selected patients discuss their preferences for future medical care with their healthcare agent during a structured conversation with a trained advance care planning facilitator. The facilitator then translates the patient's wishes into an actionable medical order set using a Physician's Order for Life-Sustaining Treatment (POLST) form. We wanted to know whether these patients' recorded wishes were concordant with care received at the end of life. To evaluate, we conducted an in-depth chart review of 300 patients who died in 2015 and had participated in the program. We determined that 290 patients received concordant care, whereas three patients received care discordant with their wishes before death. Seven patients did not have sufficient information in their record to determine concordance. Interestingly, we found care preferences often changed over time; ~20% of patients revised their end-of-life preferences after having the facilitated conversation, with most of those patients opting for less intensive care. Most changes to preferences were made verbally in the final setting of care. While advance care planning and the POLST form provide invaluable tools for recording patients' wishes, our study highlights a need to track patients' wishes as they evolve over time and a need for ongoing, real-time conversations about goals of care, even after a POLST is completed.
Palaeoanthropology, or more precisely Palaeolithic archaeology, offers the possibility of bridging the gap between mortuary activities that can be observed in the wider animal community and which relate to chemistry and emotion; to the often-elaborate systems of rationalization and symbolic contextualisation that are characteristic of recently observable societies. I draw on ethological studies to provide a core set of mortuary behaviours one might expect hominoids to inherit, and on anthropological observations to explore funerary activity represented in the Middle and Upper Palaeolithic, in order to examine how a distinctly human set of funerary behaviours arose from a more widespread set of mortuary behaviours. I suggest that the most profound innovation of the hominins was the incorporation of places into the commemoration of the dead, and propose a falsifiable mechanism for why this came about; and I suggest that the pattern of the earliest burials fits with modern hunter-gatherer belief systems about death, and how these vary by social complexity. Finally, I propose several research questions pertaining to the social context of funerary practices, suggesting how a hominin evolutionary thanatology may contribute not only to our understanding of human behavioural evolution, but to a wider thanatology of the animal kingdom.This article is part of the theme issue 'Evolutionary thanatology: impacts of the dead on the living in humans and other animals'.
Evolutionary thanatology includes the study of necrophoresis-the removal of dead individuals by the living among social insects. In human societies, "necrophoresis" is performed via the funeral ceremony. In pre-modern societies, relatives and local community members helped to conduct funerals. In this way, holding a funeral was a form of mutual help, a social exchange of duty and responsibility essential to individuals. These societies developed systems to ensure the survival of humans as social animals based on mutual trust built over long periods of time within the same community. Contemporary societies are undermining these systems. Compared to funerals in pre-modern societies, holding a funeral in a modern society is a complicated process that requires professionals with specialized knowledge and skills. If people feel they can face mortality without support from relatives or the local community, and that they cannot necessarily expect a future return on the effort invested in community-based social relationships, they may begin to disengage from such relationships. In the context of modernization, the clearest changes in collective funerary behaviours include decreased funeral attendance and the above-mentioned outsourcing of funerary services. As such, it can be said that bonds with the dead changed completely under modernization, especially in the twentieth and twenty-first centuries. To establish a sociology of death with a clearer focus on how funeral ceremonies have been affected by modernization, there is a need for research concerned with human behavioural changes regarding the treatment of corpses-that is, a "funeralogy". Accordingly, this study aimed to investigate how modernization has complexified the handling of deceased bodies as death-related services have become commoditized and outsourced while, at the same time, local communities are becoming disengaged from their traditional roles in funeral ceremonies. To this end, fieldwork was conducted in several countries. Moreover, data from surveys conducted by the Social Well-Being Research Consortium in Asia in five East and Southeast Asian countries were quantitatively analysed. The findings highlight the modernization of funerals with the outsourcing of funeral services from the perspective of socio-economic development.This article is part of the theme issue "Evolutionary thanatology: impacts of the dead on the living in humans and other animals".
Since the latter part of the twentith century, international research, education and practice of advance care planning has experienced a diversity of developments and defintions. Whilst this variety may seem bewildering, a continued commitment to accurate, focussed research enables better care through better understanding and better evidence.
La vie rituelle des Kaingang, une société amérindienne du Brésil, est caractérisée par la célébration d’un rite de secondes funérailles, nommé Kikikoi, que ces derniers associent explicitement à la représentation de leur identité amérindienne ainsi qu’à la revendication de leurs droits constitutionnels et territoriaux. À la suite de fortes pressions externes, sa réalisation fut interrompue pendant près de vingt-cinq ans. Sa reprise en 1976 lui donna un second souffle qui dura un peu plus d’une trentaine d’années jusqu’en 1999. Depuis le début du présent millénaire, la réalisation de ce rite fait l’objet de vives discussions au sein de diverses communautés Kaingang où une partie grandissante de la population convertie au pentecôtisme s’oppose à sa réalisation en invoquant notamment l’importante consommation de boisson fermentée qu’il implique. Ses réalisations récentes ont fait l’objet de divers aménagements tenant compte des dynamiques politiques et religieuses locales. Dans cet article, nous décrivons et analysons cette actualisation récente du Kikikoi en regard des nouvelles dynamiques sociales auxquelles est confrontée la culture kaingang.
Le progrès des soins, l'évolution des relations soignants/soigné, l'apparition de la pathologie VIH, l'allongement régulier de la durée de vie, nous ont amené à dépasser les barrières symboliques "curatif/palliatif" pour rejoindre la notion du "soin continu".
Les modèles de soins palliatifs récents défendent une approche de la médecine holistique, interdisciplinaire et décloisonnée et encouragent à déployer une médecine de qualité, cohérente, impliquant la dimension subjective. La démarche palliative entre aujourd’hui dans une ère d’innovations cliniques qui ne va pas sans bouleverser les pratiques. Certaines situations peuvent se caractériser par un sentiment de nouveauté, et confrontent alors le soignant à un questionnement, à une adaptation, faisant parfois le lit de l’impuissance et du sentiment d’échec. Ces situations nécessitent donc pour les soignants, de repenser régulièrement leur rapport à la mort, d’adapter leurs schémas de pensées, leurs représentations. Nous pouvons toutefois nous poser la question des effets à long terme de la répétition de situations cliniques instables, nouvelles et peu élaborées. L’article se propose de réfléchir à l’hypothèse selon laquelle ce sont ces situations complexes « non ou peu encore advenues » qui génèrent le mal être soignant, dans un contexte où les dispositifs d’étayage habituels de soutien informel, de compagnonnage, de formation ou encore de débriefing ne paraissent pas toujours fonctionnels.Le sentiment de détresse ressenti par le soignant, les situations nouvelles et complexes, une confrontation régulière et répétée mais non élaborée à la mort, contrairement à ce que l’on pourrait penser, ne génèrent pas en soi l’expérience et la maturation de sa posture professionnelle. C’est ainsi qu’il faut être conscient que l’innovation clinique, avec tous les avantages et bénéfices en matière de santé publique que nous pouvons envisager en terme notamment de qualité de vie de pour les patients en soins palliatifs, doit malgré tout être soumise à précaution en tant que les stratégies d’ajustements des équipes soignantes sont parfois difficilement mises à l’épreuve et nécessitent un cadre un étayage de la part des institutions.