As the health status of patients living with multiple chronic conditions declines, these patients experience a variety of symptoms (eg, respiratory, gastrointestinal, psychological symptoms; overall symptoms of decline; and pain). Respiratory symptoms can include dyspnea, cough, and excessive upper respiratory tract secretions. Gastrointestinal symptoms can include nausea and vomiting, constipation, and malignant bowel obstruction. Overall symptoms include anorexia, cachexia, and fatigue. Psychological symptoms may manifest as depression, anxiety, or delirium. For patients with chronic pain and progressive disease, it is important to identify the etiology and type of pain (ie, visceral, somatic, neuropathic) because management differs. An evaluation of total pain should consider the various domains of suffering, including physical, psychological, and spiritual suffering. It is imperative to attempt to identify the underlying causes of the symptoms and address it if possible. It also is important to relieve symptoms using nonpharmacologic and pharmacologic approaches. In patients unable to self-report symptoms, family members and/or caregivers can provide insight into the condition of the patient.
OBJECTIVE: End-of-life (EOL) care is a developing concept in India, with well-established practices in certain states like Kerala, but not in all the states. As there is a substantial stigma associated with death discussion across the Indian population, the experiences of caregivers of people with advanced cancer have not been explored. Our aim in this study was to explore the experience and perceptions of caregivers of people diagnosed with advanced cancer regarding the quality of the individuals' death.
METHODS: An exploratory study where the caregivers (n = 108) of advanced cancer patients, who died either during hospitalization or at home, were interviewed to assess quality of death (QOD), using an open-ended question to explore the sufferings of the patients in the final days and caregivers' coping mechanism.
RESULTS: Majority of the patients died at home (n = 79, 73.1%). The thematic analysis of the transcripts resulted in seven sub-themes, which were categorized under four major themes, namely 'bodily discomfort', 'psychological experiences' with the sub-themes resilience and existential distress, 'awareness of prognoses' with the sub-themes aware, unaware and conjecture, and 'carers coping' with the sub-themes perceived strain and contentment.
CONCLUSION: Patients under EOL care experience physical and psychological suffering, as reported by the caregivers. Efforts must be undertaken to reduce suffering by means of improving focus on and strengthening symptom management and enhancing psychosocial support, for optimally utilizing the available interventions to manage the physical symptoms and to address the psychosocial issues.
Introduction : Cicely Saunders a introduit la notion de « total pain » dans la médecine palliative. Dans cette approche, l’attention aux besoins spirituels – dont la religion – en fait partie intégrante. Le médecin généraliste (MG) tient un rôle important dans les soins palliatifs jusqu’au décès à domicile. Cette étude s’intéresse à l’abord de la religion par les MG avec leurs patients.
Méthode : Douze entretiens semi-directifs ont été menés auprès de médecins généralistes (MG) exerçant dans les Hautes-Pyrénées. Le guide d’entretien a été construit suite à l’élaboration d’un protocole de validation qui a aussi servi à l’analyse des données. L’émergence de nouveaux indicateurs ont été intégrés dans cette grille.
Résultats : Les besoins spirituels et religieux sont peu cités par les MG parmi les besoins de la personne malade, contrairement aux besoins physiques et psychologiques. L’abord de la religion par les MG est relié aux « non-dits » et à la gêne ressentie. Certains sollicitent une personne ressource. L’inexpérience, la crainte de prosélytisme, le manque de temps et la laïcité sont d’autres facteurs cités. Le fait que la demande vienne du patient et les convictions personnelles du MG influencent l’abord de ce sujet. Les aspects religieux les plus cités sont la vie après la mort, les rites funéraires et les représentants du culte.
Conclusion : Dans cette étude qualitative, il apparaît que les besoins spirituels et religieux sont peu évoqués par les MG bien qu’ils considèrent comme important le respect des convictions des patients, l’empathie et le rôle privilégié qu’ils tiennent. Les causes en sont multiples et sont ancrées dans la relation médecin–malade.
Background: A systematic understanding of socio-economic inequalities in end-of-life (EOL) suffering among advanced cancer patients is required to inform efforts to reduce these inequalities as part of Universal Health Coverage goals.
Aims: To assess inequalities in multiple domains of EOL suffering among advanced cancer patients – physical, functional, psychological, social, and spiritual –, using two socio-economic status (SES) indicators, education and perceived economic status of the household.
Methods: We used cross-sectional data from surveys of stage IV cancer patients (n = 1378) from seven hospitals across five countries (China, Sri Lanka, India, Vietnam and Myanmar). We conducted separate multivariable linear regression models for each EOL suffering domain. We also tested interactions between the two SES indicators and between each SES indicator and patient age.
Results: Patients living in low economic status households /with fewer years of education reported greater suffering in several domains. We also found significant interaction effects between economic status of the household and years of education for all EOL suffering outcomes. Age significantly moderated the association between economic status of the household and social suffering and between years of education and psychological, social, and spiritual suffering (p < 0.05 for all).
Conclusion: Results highlight that SES inequalities in EOL suffering vary depending on the suffering domain, the SES indicator assessed, and by patient age. Greater palliative care resources for patients with low SES may help reduce these inequalities.
BACKGROUND: End-of-life is a unique and multidimensional experience, and physical complaints can reveal other areas of distress.
METHOD: A case report of a woman with terminal cancer with painful and deforming skin striae cared by a multidisciplinary team.
RESULTS: After initially treating her physical pain, other end-of-life psychosocial, spiritual, and existential aspects could be addressed.
SIGNIFICANCE OF RESULTS: Physical distress can unveil other essential areas of end-of-life experience when multidisciplinary teams caring for the terminally ill patients use holistic approaches.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
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.
Ce livre est une évocation sensible de la perte et des souffrances qu’elle engendre, destinée à soutenir les personnes endeuillées dans l’épreuve qu’elles traversent.
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.
[Intro.]
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.
Informal caregivers are at risk of being overwhelmed by various sources of suffering while caring for their significant others. It is, therefore, important for caregivers to take care of themselves. In the self-care context, mindfulness has the potential to reduce caregiver suffering. We studied the effect of a single session of 20-minute mindful breathing on the perceived level of suffering, together with the changes in bispectral index score (BIS) among palliative care informal caregivers. This was a randomized controlled study conducted at the University of Malaya Medical Centre, Malaysia. Forty adult palliative care informal caregivers were recruited and randomly assigned to either 20-minute mindful breathing or 20-minute supportive listening. The changes in perceived suffering and BIS were measured preintervention and postintervention. The reduction in suffering score in the intervention group was significantly more than the control group at minute 20 (U = 124.0, n1 = n2 = 20, mean rank1 = 24.30, mean rank2 = 16.70, z = -2.095, P = .036). The reduction in BIS in the intervention group was also significantly greater than the control group at minute 20 (U = 19.5, n1 = n2 = 20, mean rank1 = 29.52, mean rank2 = 11.48, z = -4.900, P < .0001). Twenty minutes of mindful breathing was more efficacious than 20 minutes of supportive listening in the reduction in suffering among palliative care informal caregivers.
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.
[Extrait du mémoire]
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.
[Résumé éditeur]
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.