L'auteure présente l’oeuvre de Munch, peintre norvégien, dont les portraits, autoportraits et paysages sont marqués par la maladie, la mort, la souffrance et l’angoisse de la vie. Utilisant l’expressionnisme pour retranscrire ses émotions et se confronter à sa propre personnalité, l’artiste utilisait la symbolique des couleurs et introduisait dans ses toiles un langage codé ainsi que des motifs stylisés.
Context: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.
Objectives: To examine bereaved parents' perceptions of infant suffering in the NICU.
Methods: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death.
Results: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making.
Conclusion: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
BACKGROUND: The International Association for Hospice and Palliative Care (IAHPC) developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief.
AIM: The objective of this paper is to present the research behind the new definition.
METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In phase one, 38 PC experts evaluated the components of the World Health Organization (WHO) definition and suggested new/revised ones. In phase two, 412 IAHPC members in 88 countries expressed their level of agreement with the suggested components. In phase three, using results from phase two, the expert panel developed the definition.
RESULTS: The consensus-based definition is "Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers." The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to palliative care.
CONCLUSIONS: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering, and those who believe that PC describes the care of those with a very limited remaining life span.
Suffering experiences are common phenomena in palliative care. In this study, we aim to explore the different patterns of suffering in palliative care. Adult palliative care patients were recruited from the University of Malaya Medical Centre. Suffering scores were charted 3 times a day for a week. The characteristics of the suffering charts were analyzed using SPSS. The patterns of suffering were analyzed using structural pattern recognition. A total of 53 patients participated. The overall trends of suffering were downward (64%), upward (19%), and stable (17%). Median minimum and maximum suffering scores were 2/10 and 6/10, with an average of 3.6/10. Nine patterns of suffering were recognized from categorizing two key characteristics of suffering (intensity and fluctuation)—named S1 to S9. Understanding the different patterns of suffering may lead to better suffering management.
The huge problems related to chronic, ultimately fatal diseases involve disability, pain, suffering and the perception of one's doom; this calls for reappraising the conventional concepts of health and disease, life and death, encompassing spirituality and the mystery of death beyond any limited perspective. The management of suffering and pain to enhance resilience plays a central role in palliative care (PC) and is the core of the patient-centered approach, focused on the "to care" instead of the "to cure" of the illness-centered medicine. In this article, the perspectives supporting these instances are analyzed, focusing on hypnosis, to be considered as a powerful technique able to improve patient's control over mind and body (including relaxation, fairness, analgesia, improved stability of physical parameters and wellbeing).
J'ai professé, en tant qu'infirmier, pendant plus de 20 ans en service d'oncologie, puis de soins palliatifs. Enseignant et psychothérapeute depuis 10 ans, j'ai la chance de continuer de travailler avec des étudiants infirmiers dans des services de soins palliatifs et de psychiatrie, ainsi que de superviser des équipes de soins. Ethicien de formation, je fais partie d'un comité d'éthique dans un hôpital neuropsychiatrique. Ces différentes casquettes me donnent le grand privilège de rencontrer à la fois des patients en fin de vie ou souffrant de troubles psychiques, des soignants et des étudiants confrontés à des situations difficiles, et de relire, en comité d'éthique, des situations cliniques de grande souffrance.
La question de l'euthanasie est très régulièrement évoquée et suscite de nombreux débats, aussi passionnels que passionnants.
Le cancer du col utérin est fréquent chez les jeunes femmes en zone rurale et vu souvent au stade tardif. La présente étude avait pour objectif de questionner les facteurs responsables des souffrances physiques et psychologiques de ces patients en fin de vie. La question de la fin de vie qui fait référence ici aux soins palliatifs reste une des perspectives non négligeable de sa prise en charge. Il s'agit d'une étude qualitative et rétrospective à visée descriptive et concerne une série de trois cas de cancer du col de l'utérus suivis à l'hôpital Saint Vincent de Paul au cours de l'année 2017. Les données ont été collectées à partir des dossiers de soins des patientes. Ces données ont été analysées selon la méthode de création et gestion de code-books et plus particulièrement le codage par catégories ontologiques. Les résultats de ce travail nous ont permis d'accuser les facteurs tels que le retard de la suspicion et du diagnostic du cancer du col utérin, la difficulté d'accès aux soins holistiques ainsi que la précarité sociale comme prétexte des souffrances physiques et psychologiques que connaissent ces patientes reçues dans le milieu éloigné des métropoles en fin de vie. Cette étude permet d'insister sur les approches de soins palliatifs comme composante incontournable de la prise en charge en milieu rural.
Background: The Universal Health Coverage goals call for access to affordable palliative care to reduce inequities in “total pain” and suffering. To achieve this, a patient-centred understanding of these inequities is required.
Aim: To assess association of total pain and suffering (i.e. physical, psychological, social, and spiritual health outcomes) and perceived health care quality with financial difficulties among stage IV solid malignancy patients.
Design: Using baseline data from the COMPASS cohort study, we assessed total pain and suffering including physical (physical and functional well-being, pain, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual (spiritual well-being, hope) outcomes and perceived health care quality (physician communication, nursing care, and coordination/responsiveness). Financial difficulties were scored by assessing patient perception of the extent to which their resources were meeting expenses for their treatments, daily living, and other obligations. We used multivariable linear/logistic regression to test association between financial difficulties and each patient-reported outcome.
Setting/participants: Six hundred stage IV solid malignancy patients in Singapore.
Results: Thirty-five percent reported difficulty in meeting expenses. A higher financial difficulties score was associated with worse physical, psychological, social, spiritual outcomes, and lower perceived quality of health care coordination and responsiveness (i.e. greater total pain and suffering) (all p < 0.05). These associations persisted after adjustment for socio-economic indicators.
Conclusion: Results identify advanced cancer patients with financial difficulties to be a vulnerable group with greater reported total pain and suffering. A holistic patient-centred approach to care at end-of-life may help meet goals for Universal Health Coverage.
Ce travail de mémoire essayera de déterminer pourquoi la prise en charge de la souffrance existentielle chez des patients en situation palliative met les praticiens amenés à les prendre en charge en difficulté. Dans une première partie, nous aborderons le cadre conceptuel de la souffrance existentielle et de la sédation profonde et continue. La deuxième partie abordera la méthode de ce travail de recherche puis les résultats. Dans une dernière partie, les résultats de cette étude seront discutés au regard des données de la littérature actuelle.
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Dans le débat sur la fin de vie qui anime la société française, le citoyen est sommé d’avoir un avis bien tranché et de dire si, oui ou non, il est favorable à l’euthanasie. Mais sommes-nous bien "armés" pour penser la fin de vie ? Connaissons-nous les implications éthiques, les droits du patient et des familles, les dispositions légales autour des obligations des médecins et des soins palliatifs ?
En clarifiant, de façon méthodique et pédagogique, les notions fondamentales de finitude, souffrance, dignité et liberté, Jacques Ricot permet à chacun de mieux comprendre tous les enjeux philosophiques, sociétaux et juridiques de la fin de vie.
Dans cette 2e édition entièrement revue, l’auteur poursuit sa réflexion éthique en proposant plusieurs enseignements autour de la vie et de la mort de Vincent Lambert et en décrivant l’évolution récente du débat sur la légalisation de l’euthanasie.
Les articles de ce volume cherchent à comprendre la souffrance à partir de ses propres représentations et soulignent la nécessaire articulation des discours littéraires, philosophiques, psychanalytiques et médicaux pour cerner ce fait social et moral total qu'est l'expérience, vécue et vivante, de la souffrance.
Palliative care (PC) names as one of its central aims to prevent and relieve suffering. Following the concept of "total pain", which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient's psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide (PAS), or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers' efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS.
The paper presents an account of suffering as a multi-level phenomenon based on concepts such as mood, being-in-the-world and core life value. This phenomenological account will better allow us to evaluate the hardships associated with dying and thereby assist health care professionals in helping persons to die in the best possible manner. Suffering consists not only in physical pain but in being unable to do basic things that are considered to bestow meaning on one's life. The suffering can also be related to no longer being able to be the person one wants to be in the eyes of others, to losing one's dignity and identity. These three types of suffering become articulated by a narrative that holds together and bestows meaning on the whole life and identity of the dying person. In the encounter with the patient, the health-care professional attempts to understand the suffering-experience of the patient in an empathic and dialogic manner, in addition to exploring what has gone wrong in the patient's body. Matters of physician assisted suicide and/or euthanasia-if it should be legalized and if so under which conditions-need to be addressed by understanding the different levels of human suffering and its positive counterpart, human flourishing, rather than stressing the respect for patient autonomy and no-harm principles, only. In this phenomenological analysis the notions of vulnerability and togetherness, ultimately connecting to the political-philosophical issues of how we live together and take care of each other in a community, need to be scrutinized.
"When death knocks at the door of our ward, we do not easily open the door", an intensivist once said. In the intensive care unit (ICU) and emergency department, care is strongly focused on cure and resuscitation. Notwithstanding the technological progress made in intensive and emergency medecine, a substantial number of the partients admitted to the ICU cannot be saved.
Witnessing end-of-life suffering of loved ones is an underappreciated stressor that may affect caregiver bereavement. We interviewed 61 spousal caregivers of hospice patients who died within the past 6–18 months. Higher rumination about suffering and lower feelings of relief was related to poorer well-being. Rumination by caregivers about end-of-life suffering was an important predictor of depression and complicated grief. Most caregivers viewed the death as at least in part a relief. One important focus of grief support may be to help caregivers find productive ways to avoid rumination and use other forms of coping and to acknowledge feelings of relief.
In this retrospective study, determinants of unbearable suffering in hospice patients who died due to euthanasia were analyzed. The four dimensions of suffering (physical, psychological, social, and existential) were used as a framework. 28 patients (5% of all admitted patients in nine years) were included. Most patients indicated 3–5 determinants, predominantly a combination of physical (96% of patients) and existential determinants (89%). Fatigue, anorexia, and dry mouth were the most prevalent and severe symptoms. Psychological (21%) and social determinants (4%) were much less often described. The results of this study may be used to assess determinants playing a role in euthanasia requests.
Introduction: the concept of total suffering is well known to palliative care, and it indicates that there are several complex and correlated factors, which contribute to a dynamic and unique experience of one's illness trajectory. Research on terminally ill patients' will to live (WtL) has revealed important insights on its fluctuations over time and its correlated factors. We report an N-of-1 case study with the aim of examining the concept of total suffering objectively, and the WtL trajectory over time, its fluctuations, as well as its possible correlation with other distressing symptoms in a terminally ill cancer patient.
Case Description: souffrA 72-year-old cancer patient who verbalized total suffering and a low WtL. We used the Edmonton Symptom Assessment Scale (ESAS), added an additional WtL question, and asked the patient to rate her suffering using the ESAS twice daily (morning and afternoon) for a period of 28 days. Spearman's correlation coefficients between all physical and psychosocial ESAS items were statistical significant in 34 of the 45 performed correlations (30 highly significantly correlations and 4 in a lesser degree). WtL trajectory was fluctuant through the course of the illness, and significant correlations between WtL and all ESAS items were found, except for shortness of breath and drowsiness (after Bonferroni correction). High positive correlations were found between WtL and ESAS total score and ESAS physical and psychological subscores.
Discussion: Developing evidence-based understanding of total suffering and WtL in the terminally ill will lead to better approaches to patients and their loved ones.
L'auteur propose une réflexion en cinq temps. Il revient, d'abord sur la complexité de ce qui est à réfléchir en insistant sur la notion d'incertitude comme présupposé éthique de toute réflexion-décision. Puis, il considère la notion de souffrance pensée au coeur de l'expérience du corps et de la vie. Ceci lui permet d'envisager la notion de souffrance spirituelle comme lieu d'inscription herméneutique du vécu de la souffrance sollicitant une sédation. La prise en compte de cette dimension spirituelle remet ensuite les notions d'interdisciplinarité et de compétence pour répondre à une demande de sédation. Ceci permet, au terme de ce parcours réflexif, de situer la demande rituelle comme modalité intersubjective d'entrée en sédation.
[Adapté de l'Intro.]
Background: Requests for physician-assisted death (PAD) in patients with cognitive impairment are complex and require careful consideration. Of particular difficulty is determination of whether the request is voluntary and well considered.
Results: Euthanasia and physician-assisted suicide (PAS) are both legal in The Netherlands, Luxemburg, Colombia, and Canada. Euthanasia is legal in Belgium, while PAS is legal in Switzerland and Oregon, Washington, Montana, Vermont, and California (USA). Upon a PAD request, evaluation of the capacity to consent medical treatment is relevant for the decision-making process, while evaluation of testamentary capacity is appropriate before an advance euthanasia directive is written. Anosognosia assessment throughout the Alzheimer's disease continuum provides essential and relevant information regarding the voluntary and well-considered nature of the PAD request; meanwhile, early assessment of hypernosognosia or subjective cognitive decline assists in formulation of a clinical prognosis. Furthermore, the assessment of physical and psychological suffering should incorporate verbal and nonverbal cues as well as consideration of the psychosocial factors that might affect due care criteria.
Conclusion: The clinical approach to a PAD request should consider the legal framework and the decision-making capacity, assess memory deficit awareness and the perception of suffering, and evaluate mental competency when considered pertinent.