Compétences en soins patiatifs : que faut-il savoir faire en tant que médecin [Competencies in palliative care : what should the physicians be able to do?]

Palliative patients (patients with progressive incurable illnesses) have a number of needs, early and late in their illness trajectories. This article highlights some of the most important competencies required by physicians to address these needs. They cover a broad spectrum of domains and include pain and symptom management, communication, disclosure, prognostication, and psychological, social and spiritual needs. All physicians, generalists and specialists alike, should possess the basic competencies but should also recognize that some patients, especially those not responding to initial strategies, require timely referrals to specialized palliative care teams.

Healthcare Power of Attorney

A health care power of attorney (HC-POA) is a document authorizing an attorney-in-fact (your designated agent) to make health care decisions on your behalf if you (the principal) are unable, in the judgment of your attending physician, to make health care decisions. Health care is defined as any care, treatment, service or procedure required to maintain, diagnose or treat a physical or mental condition. Through your HC-POA, you may authorize someone else to consent, refuse or withdraw consent to health care on your behalf. The attorney-in-fact is permitted to make only health care-related decisions on your behalf. In exercising this authority, the attorney-in-fact must act consistently with your desires (as stated in the HC-POA document).

Considering a Living Will

A living will is a written declaration informing medical personnel whether certain life-sustaining procedures should be withheld or withdrawn if (1) you are in a terminal condition; and (2) you are unable to decide for yourself. You (the declarant) may execute a living will declaration as a stand-alone document or you may include a living will within a health care power of attorney document. A living will can be revoked at any time and in any way by communicating the revocation to anyone who was aware that the living will existed.

Involuntary Discharge from a Long-Term Facility

An involuntary discharge from a long-term care (LTC) facility occurs when the facility provides a 30-day written notice to a resident informing him/her of the need to move out of the facility. The notice must set out the reasons for the transfer or discharge as well as state the effective date, location of transfer or discharge, statement of appeal rights and the contact information (name, address and telephone number) for the Office of the State Long-Term Care Ombudsman.

Conversioni al cattolicesimo a Roma tra Sei e Settecento. La presenza degli scandinavi nell’Ospizio dei Convertendi.

In my PhD dissertation, I have examined a group of people of Scandinavian origin received by Ospizio dei Convertendi. This group has been hitherto largely unknown to historical research. The Ospizio was an institute founded by the Oratorian Congregation in Rome in 1673 to provide religious instruction and material aid to both recent and aspirant converts to Roman Catholicism. My research traces the profile of converts and a typology of motives, examining different factors which influenced the conversion process. I show that the key factors were often of a social rather than a religious nature. Moreover, I have analyzed the hospice in the context of Counter-Reformation charity as well. In terms of numbers, the Scandinavians formed a somewhat marginal yet not insignificant group within the Roman hospice. Out of a total of 2203 guests received between 1673 and 1706, 4.6 % were Scandinavians: 74 Swedes (including Finland and Livonia) and 27 Danes (including Norway). They came from a rigorously Protestant region which reacted to Catholicism with severe legislative measures. Converts to Catholicism risked confiscation of their goods, expulsion or even capital punishment. Since both Sweden and Denmark were practically impenetrable to Catholicism at the time and clandestine missionary attempts often failed before they had even properly started, the Roman Catholic Church shifted its interest towards Northerners arriving in Rome, a preferred destination for young noblemen, artists and migrant craftsmen. The material related to Ospizio dei Convertendi, conserved in the Vatican archives, is a scarcely known yet unusually rich source, not only for the religious history of our continent, but also for social history and the study of migration in early modern Europe. It contains a wealth of information about members of the subordinate classes, of their travels and lives in Europe. The profile delineated in these documents is of individuals who had a wide range of different professions and different aspirations. These documents encompass a vast social spectrum that was highly mobile on a continent which by that time had become pluriconfessional. Therefore, these migrants faced the complex religious reality in their everyday life. The principal corpus of my research consists of two types of manuscript sources created for administrative and in a way also for apologetic purposes of the Roman Catholic Church. My starting point is the Primo registro generale of Ospizio dei Convertendi. This is a volume in which the following information about each guest was registered: name, nationality, city of origin, age, sex, profession, confession professed before converting, date of arrival, departure, abjuration and baptism. Typically, the convert was male, originating from Stockholm or Copenhagen, from 21 to 30 years of age. The biggest occupational groups in descending order were soldiers, noblemen, craftsmen and sailors. Thus the data reflects a multiform reality of interurban and long distance migration, ideals regarding the education of young noblemen and gentry as well as the need of European armies to hire foreign mercenaries in their various campaigns. Against this background the almost total absence of women is hardly surprising: there is only one woman in the material I have studied. The second main source, Nota degl’ospiti ricevuti e spese fatte per essi, sheds more light on the choices of the converts, their motivations and their lives outside Scandinavia before reaching Rome. This narrative material permits an analysis which completes but also goes far beyond the columns of the Institute’s general register. This material consists of reports written by Catholic priests based on an interview conducted upon each guest’s arrival. The material frequently includes information on what the converts would do following their departure from the Institute as well. These sources have a specific narrative form and contain short biographies, list reasons for converting and information about the journey from the North to the Mediterranean - a journey which in many cases took several years. Moreover, they show that certain unorthodox practices such as calling on the saints and pleading for help from them were not uncommon in the Protestant popular religion. The recording of information on conversions from Protestantism to Catholicism reflects both religious and social interest on the part of the receiving institute. The information obtained was used for the purposes of religious teaching, for finding adequate ways of inserting the convert into Italian society so that he could earn a living, and to find effective methods to convert others with a similar cultural and geographical background. The stories recorded were based on interviews with the newly-arrived, information obtained from a travel companion or fellow countrymen, or from written documents the aspirant converts carried with them. These sources illustrate, although sometimes in rather simplified ways, the circumstances and motivations which were relevant to the choice of changing one’s confession. In addition, I have examined petitions addressed to the hospice and other Roman authorities in order to get financial aid. These petitions were written by Italian scrittori, and they contain certain conventions and topoi of presenting the conversion with the purpose of improving the chances of obtaining financial aid. It is through these filters, which may seem initially almost invisible, that the remote voice of the converts reaches us. The results of the analysis are particularly interesting because they disagree with some of the principal conclusions of previous work on the subject. First, earlier research has focused almost exclusively on the conversions of noblemen, and has argued, second, that the Queen Christina of Sweden was the driving force behind their change of confession. The sources examined for this dissertation present a profile of long-distance migrants, many of them members of the subordinate classes, who were looking for ways to make their living in Europe. These people had in many cases left their country of origin several years earlier and not for religious reasons, so, crucially, we are not dealing with confessional migration in these cases. Rather, conversion was a complex process, intricately tied up with strategies of survival, integration and upward social mobility. At the same time, while these components are significant on their own right, they do not necessarily point to the absence of motivations of a more clearly religious nature.

Den vårdande och helande bilden: möten med bildkonst i vårdandets värld

Denna vårdvetenskapliga avhandling syftar till att avtäcka och belysa en vårdande och helande dimension vid existentiellt lidande patienters möten med bildkonst inom vårdkontext. Kunskapssökandet sker i två studier. Den första (studie I) är en ikonografi sk tolkning av konstnären Matthias Grünewalds (ca 1460–1528) senmedeltida altarskåpsmålningar. I studien uttolkas lidandets uttryck och narrativa budskap samt symboliska gestaltningar av vårdande och helande i valda delar av detta s.k. Isenheimaltares bildprogram. Tolkningen utgår från rekonstruktionen av altarskåpets ursprungskontext, det medeltida Isenheimklostret, där svårt sjuka och döende patienter vårdades. I studie två (II) fortsätter sökandet i den moderna hospicevårdens kontext med hjälp av en kvalitativ intervjustudie som utforskar patienters meningsskapande vid möten med självvald bildkonst (oljemålningar och akvareller av fi nländska konstnärer som donerats till det sjukhus där intervjustudien gjordes). Forskningsansatsen är inspirerad av Hans-Georg Gadamers (1901–2002) hermeneutik. Vidare används några nyare tolkningsteoretiska ansatser inom bildkonstens område. Forskningens tolkningsresultat visar att bildkonsten har potentialer såväl på ett miljöestetiskt plan som på en djupare individuell symbolnivå. Som designkomponent i vårdmiljöns rumsliga gestaltning bygger bildkonsten in estetiska, etiska och andliga kvaliteter utifrån tidsmässiga och kulturella koder. I den medeltida klostervårdens kontext sammanföll bildkonstens dekorativa betydelse med andliga och helande syften. När det gäller självvalda konstverk i den moderna vårdkontexten bidrar de till det enskilda patientrummets atmosfär på ett unikt sätt utifrån patientens personlighet och behov. På en fördjupad mötesnivå, i samspel med bildens symboliska funktion, sker en inlevelsemässig förfl yttning in i bildens värld. Betraktarens inlevelse aktiveras till en transcenderande rörelse som går bortom det faktiska rummets och den reella tidens gränser. Vid resor i konstens bildvärld spelas minnesvärda händelser upp från det förgångna, men även framtiden kommer betraktaren till mötes. I en existentiell livssituation söker människan i konstverkets bildinnehåll efter symbolisk mening som kan ge svar på lidandets frågor. Bilderna iscensätter då helande motbilder som utgör korrektiv i symboliska former när olika existentiella förluster hotar. När livet förbleknats av sjukdom besvarar bildvärlden den lidandes blick med lysande violer som blommar upp, ger livskraft och bekräftar personens värdighet mitt i det förvissnande människolivet. När ångest och otrygghet nalkas inbjuds betraktaren till besök i landskap som utvidgar sjukhusrummets väggar mot hemgårdens trygghet. Där livet hotas av förgänglighet tar bildvärlden människan med sig till naturens eviga återfödelse. Upplevelsen av att vara delaktig i ett större och heligt sammanhang öppnar vägen ut ur lidandets avskurenhet. I medeltidens vårdkontext erbjöd den sakrala bilden en kollektiv och helande Symbolon som genom sin representationskraft synliggjorde det osynliga. Vid bildmöten i den moderna hospicevårdens kontext var det naturteman som gläntade på dörren till ”det hemliga rummet i djupet av hjärtat”. Forskningen antyder att även om meningsskapandet i ett bildmöte är avhängigt tidsepok, betraktarens förförståelse och kulturella kontext samt typen av bilder kan bildsymboliken, generellt förstådd som den saknade formen eller det saknade livssammanhanget, framvisa en helande och hoppingivande ordning i lidandets kaos.

Représenter et construire la psychiatrie en France, 1801-1863 : l'art des premiers aliénistes

Depuis les quatre dernières décennies, des publications célèbres analysent l’histoire, l’art et l’architecture de la psychiatrie de la fin du dix-neuvième siècle afin de dénoncer les aspects négatifs de la science psychiatrique : voyeurisme sur la personne du fou, déshumanisation de l’asile, autoglorification du psychiatre, abus de pouvoir. C’est ce regard à sens unique que j’ai voulu déjouer dans cette thèse en consacrant ma recherche aux œuvres produites en amont de cette période. Leur analyse a permis de prendre conscience de l’autre versant de la science psychiatrique, celui qui est philanthropique, bienveillant et animé d’un réel espoir de guérison. Mon objectif a été de construire, par l’analyse de ce domaine iconographique inédit ou négligé, une nouvelle histoire de la naissance de la psychiatrie, celle de sa culture visuelle. Une histoire qui révèle ses idéaux du début du siècle et les écarts à ses propres aspirations par son besoin de légitimation et de professionnalisation. Ma thèse propose une enquête épistémologique de l’histoire de l’aliénisme français, par le biais du discours porté par les œuvres d’art commandées par ses fondateurs. Le premier chapitre est consacré aux premiers asiles conçus comme le prolongement du corps du psychiatre et ils sont analysés selon les valeurs de la nouvelle science. Je me suis appliquée à y démontrer que le concept même d’asile, agissant sur nos sensations et sur notre cognition, relève autant des théories architecturales des Lumières que des besoins spécifiques de l’aliénisme. Le deuxième chapitre identifie, pour la première fois, un ensemble de portraits de la première génération d’aliénistes et de leurs disciples. J’argumente que ce corpus voulait imposer l’image de l’aliéniste comme modèle de raison et établir sa profession. Pour ce faire, il s’éloigne des premières représentations des aliénistes, paternalistes, et philanthropiques. Le troisième chapitre analyse les représentations des aliénés produites pour les traités fondateurs de la psychiatrie publiés en France. Le vecteur de mon analyse et le grand défi pour l’art et la science viennent de l’éthique des premiers psychiatres : comment représenter la maladie mentale sans réduire le malade à un être essentiellement autre ? Une première phase de production accorde à l’aliéné autonomie et subjectivité. Mais la nécessité d’objectiver le malade pour répondre aux besoins scientifiques de l’aliénisme a, à nouveau, relégué l’aliéné à l’altérité. Le sujet du quatrième et dernier chapitre est le cycle décoratif de la chapelle de l’hospice de Charenton (1844-1846), principal asile parisien de l’époque. J’y interroge comment l’art religieux a pu avoir un rôle face à la psychiatrie, en empruntant à l’iconographie religieuse sa force et sa puissance pour manifester l’autorité de l’aliéniste jusque dans la chapelle de l’asile. Le dix-neuvième siècle a été porteur d’espoirs en la reconnaissance de la liberté des êtres et de l’égalité des droits entre les personnes. Ces espoirs ont pourtant été déçus et les œuvres de l’aliénisme montrent un nouvel aspect de ces promesses non tenues envers les groupes fragilisés de la société, promesses de reconnaissance de leur subjectivité, de leur autonomie et de leur dignité.

Búsqueda sistemática de guías de práctica clínica en cuidados paliativos pediátricos

Actualmente se estima que más de 160.000 niños en todo el mundo son diagnosticados de cáncer cada año y esta cifra podría ser considerablemente superior debido que los datos en su mayoría son imprecisos (1), hay un gran número de niños que junto con sus familias deben hacer frente a las implicaciones del diagnóstico de cáncer o enfermedad terminal, del tratamiento y el pronóstico. En Colombia se viene practicando en los servicios de pediatría, sin embargo no se realiza bajo un protocolo establecido El objetivo de este trabajo fue realizar una búsqueda sistemática de Guías de Práctica Clínica en Cuidados Paliativos Pediátricos basadas en la evidencia en el mundo y evaluarlas mediante preguntas clínicas preestablecidas, y bajo la metodología GLIA indicada por el ministerio de protección social, teniendo en cuenta la realidad colombiana y los principios de accesibilidad, calidad y eficiencia consagrados en el Sistema General de Seguridad Social de Salud de Colombia, con el fin de identificar la mejor Guía de Práctica Clínica (GPC) para la población de la Fundación Cardioinfantil de Bogotá – Colombia. Como resultado de la búsqueda se obtuvieron 32 GPC en Cuidados Paliativos de los cuales 8 guías se relacionaban con la población objeto y solo 5 de las guías respondían a las preguntas clínicas. El informe se elaboró según la metodología PRISMA con el fin constituir una base de datos para posteriores estudios, realización de guías o la adaptación de guías basadas en la evidencia.

Calidad de vida laboral y liderazgo en trabajadores asistenciales y administrativos en un centro oncológico de la ciudad de Bogotá

El propósito de este estudio fue describir la Calidad de vida laboral (CVL) y el estilo de liderazgo percibido por el personal administrativo/asistencial de un centro oncológico y estimar la asociación entre ellas, considerando las características sociodemográficas. Para ello se aplicó el Cuestionario de Vida profesional [CVP-35] y el Test de Adjetivos de Pitcher [PAT]. En general, los participantes presentan una CVL satisfactoria, caracterizada principalmente por motivación intrínseca, lo cual fue más evidente en el personal asistencial. Respecto al liderazgo, se observó una percepción de ausencia de liderazgo o características poco deseables de éste, lo cual aunque no determina la CVL, si constituye un factor modulador de la misma, las variables sociodemográficas no guardaron relación con la CVL. Por último se resalta la responsabilidad social que tienen los directivos sobre bienestar de los trabajadores de la salud, y consecuentemente sobre la atención al paciente. Se discuten estos hallazgos y lo pertinente de utilizar las categorías emergentes del PAT.

Diferencias en costo efectividad del cuidado paliativo domiciliario frente a la atención convencional hospitalaria para el manejo de enfermedades crónicas en fase terminal

En Colombia la dinámica poblacional ha experimentado cambios a través de los años; lo cual modifica las características epidemiológicas y los perfiles de morbimortalidad de la población, aumentando la incidencia y prevalencia de enfermedades crónicas de difícil pronóstico dentro de la población; siendo estos grupos etarios hacía quienes deben destinarse nuevas modalidades de atención y soporte paliativo. Se realizó una revisión sistemática de diversos artículos, clasificados con niveles de evidencia I y II; cuyas variables de análisis fueron: El lugar de fallecimiento del paciente, alivio de la sintomatología, nivel de satisfacción del paciente y sus cuidadores con los servicios recibidos, número de ingresos hospitalarios independientemente de la causa y días promedio de estancia hospitalaria. El 88% de los pacientes que fueron vinculados a la atención domiciliaria falleció en su hogar; el 68% refirió haber experimentado disminución en la intensidad de al menos 2 síntomas como resultado de la atención en casa. El nivel de satisfacción para el cuidado en casa puntuó 19 puntos porcentuales por encima de la calificación que obtuvo el manejo hospitalario. El 23% de los pacientes tratados en su hogar, requirió al menos una hospitalización durante el manejo; mostrando una disminución en el tiempo de estancia hospitalaria de 3.4 días promedio. El manejo paliativo domiciliario de pacientes crónicos en fase terminal, no sólo es una alternativa en la reducción de costos para el sistema de salud, sino que es un factor protector de tipo emocional que refleja también una importante disminución de los riesgos de la hospitalización.

A comunicação da equipe de enfermagem com o paciente em cuidados paliativos

The article consists of a contextualized reflection on the communication in palliative care with the purpose of explaining strategies used for effective communication among the nursing, terminally ill and his family. In that sense, it was observed that for the nurse to assist the terminally ill is a difficult task, which raises sensation of sadness, frustration, impotence and even failure in the rendered attendance. This way, many professionals use denial, escaping, and the apparent coldness as defense mechanisms to cope with situation. Throughout this discussion are exposed some aspects that enable developing empathic communication skills, perceived as a task that requires nursing staff a shift in focus and attitude. Apart from careful listening, truthfulness, good humor and therapeutic touch, forming strategies for effective communication in the terminally ill life.