Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
Dans ce livre III des Tusculanes, Cicéron, en deuil de sa fille, évoque en disciple des stoïciens la mort, la douleur, le chagrin, s’exhortant à surmonter sa peine par la réflexion et la maîtrise de soi.
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.
Introduction : En France, la méthadone est autorisée uniquement comme traitement de substitution. Elle peut être utilisée pour les douleurs liées au cancer. Le but de cette étude est d’évaluer l’efficacité et les effets secondaires de la méthadone dans cette indication.
Méthode : Il s’agit d’une étude rétrospective de janvier 2010 à février 2011, incluant tous les patients recevant de la méthadone pour la première fois. Le soulagement était considéré comme obtenu si l’intensité de la douleur était inférieure ou égale à 3/10 sur l’échelle d’évaluation numérique (EN) ou inférieure ou égale à 30/100 sur une échelle visuelle analogique (Eva), à j7 et j28. Les effets secondaires et leur persistance ont été explorés pendant l’instauration, à j7 et j28.
Résultats : Vingt-deux patients ont été inclus. Vingt patients ont été évalués au 7e jour, dix-huit patients à 28e. À j7, seize patients (80 %) étaient soulagés et onze (61 %) au 28e jour. Peu de patients ont présenté des effets indésirables : 8 patients (40 %) à j7 et 3 (16,7 %) à j28.
Conclusion : La méthadone est un traitement utile contre la douleur cancéreuse, en particulier pour la douleur cancéreuse rebelle et complexe.
Du fait des multiples formes de la douleur, sa prise en charge est à géométrie variable. L’évaluation, son retentissement, son traitement, l’évaluation du bénéfice et les effets secondaires sont à chaque fois un modèle singulier.
Background: Pain is a prevalent symptom at the end of life and negatively impacts quality of life. Despite this, little population level data exist that describe pain frequency and associated factors at the end of life. The purpose of this study was to explore the prevalence of clinically significant pain at the end of life and identify predictors of increased pain.
Methods: Retrospective population-level cohort study of all decedents in Ontario, Canada, from April 1, 2011 to March 31, 2015 who received a home care assessment in the last 30 days of life (n = 20,349). Severe daily pain in the last 30 days of life using linked Ontario health administrative databases. Severe pain is defined using a validated pain scale combining pain frequency and intensity: daily pain of severe intensity.
Results: Severe daily pain was reported in 17.2% of 20,349 decedents. Increased risk of severe daily pain was observed in decedents who were female, younger and functionally impaired. Those who were cognitively impaired had a lower risk of reporting pain. Disease trajectory impacted pain; those who died of a terminal illness (i.e. cancer) were more likely to experience pain than those with frailty (odds ratio 1.66).
Conclusion: Pain is a common fear of those contemplating end of life, but severe pain is reported in less than 1 in 5 of our population in the last month of life. Certain subpopulations may be more likely to report severe pain at the end of life and may benefit from earlier palliative care referral and intervention.
Objectifs : Une approche clinique globale et analytique, prenant en compte des causes multifactorielles, s’avère nécessaire pour comprendre et traiter les douleurs complexes et réfractaires liées au cancer. Un guide a été élaboré afin d’aider le praticien dans son raisonnement clinique. Il associe quatre approches : sémiologique, physiopathologique, anatomique et fonctionnelle. Ainsi, l’objectif principal de cette étude était d’évaluer la faisabilité d’utilisation de ce guide par des médecins d’unités de soins palliatifs. Les objectifs secondaires étaient de connaître les résultats de ces approches combinées et d’observer les modifications des coanalgésies médicamenteuses et si possible les approches multimodales.
Méthode : Cette étude de faisabilité était interventionnelle, non thérapeutique, et multicentrique sur les cinq unités de soins palliatifs d’Aquitaine. Dans un travail préliminaire, le guide de raisonnement clinique a été élaboré par six médecins puis soumis à la lecture critique de huit autres médecins par entretien et enfin par questionnaire. L’étude s’est déroulée auprès de sept médecins de quatre unités de soins palliatifs, tous expérimentés et diplômés en soins palliatifs. Un questionnaire remis aux médecins portait sur l’évaluation critique de l’utilisation du recueil : son utilité, ses avantages, ses limites, ses conditions d’utilisation.
Résultats : Sept médecins ont participé à l’étude. Parmi eux, quatre ont dit utiliser un raisonnement clinique auparavant. Six ont jugé le guide utile pour étudier les éléments manquants à l’évaluation et mieux soulager. Cinq ont estimé qu’il pourrait être généralisé dans les unités de soins palliatifs, deux qu’il pourrait être intégré au dossier dès l’admission du patient. Pour deux, le manque de temps pouvaitt être un frein à sa faisabilité. Soixante-huit patients ont été inclus, représentant 84 cas de douleur (59 % nociceptives, 35 % mixtes et 6 % neuropathiques). Parmi les douleurs évaluées, 19 comprenaient une composante neuropathique (DN4 positif). La coanalgésie a été modifiée pour tous les patients dans les 24h suivant l’admission.
Discussion : Pour la plupart des médecins interrogés, le guide est utile et faisable. Le manque de disponibilité, les besoins d’intégration des approches biomédicale et psychorelationnelle, d’appropriation du guide par un apprentissage et un compagnonnage ont été relevés par certains répondants.
Conclusion : L’évaluation de ce guide doit être poursuivie, notamment en médecine générale et en gériatrie. Son impact sur la prise en charge des douleurs liées au cancer est également à étudier.
PURPOSE: Pain assessment at the end of life remains a problem for patients who are unable to self-report their pain when transitioning across care settings. This study therefore tested the internal consistency and discriminant, concurrent, and convergent validity of the Critical-Care Pain Observational Tool (French version) when used with end-of-life patients in a palliative care setting.
DESIGN: This was a descriptive correlational study that used a repeated-measures within-subjects prospective design.
METHODS: The pain of 13 patients was assessed when at rest and during turning.
RESULTS: The internal consistency reliability coefficient alphas were .64 at rest and .70 during turning. Discriminant validity was shown by a decrease in the total Critical-Care Pain Observation Tool score. Concurrent validity was demonstrated by the association between the patients' self-report of pain and the Critical-Care Pain Observation Tool score at rest (0.65, p < .016) and during turning (0.77, p = .002). Finally, the convergent validity between the Critical-Care Pain Observation Tool score and the Algoplus scale score was demonstrated with a Spearman's correlation coefficient of 0.76 at rest and 0.84 during turning.
CONCLUSIONS: The results suggest that the Critical-Care Pain Observation Tool can be used with end-of-life patients in French-speaking countries.
CONTEXT: Assessing consciousness and pain during continuous sedation until death (CSD) by behavior-based observational scales alone has recently been put into question. Instead, the use of monitoring technology has been suggested to make more objective and reliable assessments. Insights into which factors influence attitudes towards using these monitoring devices in a context of CSD is a first step in formulating recommendations to inform future practice.
OBJECTIVES: The aim of this study was to find out what influences professional caregivers' and family members' attitudes regarding the use of monitors during CSD.
METHODS: We conducted semi-structured face-to-face interviews with 20 professional caregivers and 15 family members, who cared for a patient or had a family member respectively who took part in a study using monitoring devices. Recruitment took place in an academic hospital, a loco-regional hospital and 2 nursing homes, all located in Belgium. Two researchers independently analysed the data, using grounded theory to inductively develop a model that represents the emerging attitude towards use of monitors during CSD.
RESULTS: Our model shows that the emerging attitudes towards using monitors during CSD is determined by view on CSD, desire for peace of mind, emotional valence attached to using monitors and the realization that the sole use of behavior-based observational measures could be unreliable in a CSD context. We identified several facilitators and barriers to inform future implementation strategies.
CONCLUSION: Most participants had no objections and all participants found the use of monitoring devices during CSD feasible and acceptable. We identified a number of facilitators and barriers and suggested that being aware that care can be improved, good communication, shared decision making and continuing professional education can overcome the identified barriers. We suggest future research would focus on developing implementation strategies and guidelines for introducing objective monitoring devices in diverse palliative care settings.
At 35, Mr. J. was dying of an invasive pelvic sarcoma and had a tolerance to opioids. Despite his pain, he wanted to be present with his family and friends. When his physician broached the possibility of palliative sedation, he said, “We aren’t there yet.”
OBJECTIVE: To show how a simple Bayesian analysis method can be used to improve the evidence base in patient populations where recruitment and retention are challenging.
METHODS: A Bayesian conjugate analysis method was applied to binary data from the Thermal testing in Bone Pain (TiBoP) study: a prospective diagnostic accuracy/predictive study in patients with cancer-induced bone pain (CIBP). This study aimed to evaluate the clinical utility of a simple bedside tool to identify who was most likely to benefit from palliative radiotherapy (XRT) for CIBP.
RESULTS: Recruitment and retention of patients were challenging due to the frail population, with only 27 patients available for the primary analysis. The Bayesian method allowed us to make use of prior work done in this area and combine it with the TiBoP data to maximise the informativeness of the results. Positive and negative predictive values were estimated with greater precision, and interpretation of results was facilitated by use of direct probability statements. In particular, there was only 7% probability that the true positive predictive value was above 80%.
CONCLUSIONS: Several advantages of using Bayesian analysis are illustrated in this article. The Bayesian method allowed us to gain greater confidence in our interpretation of the results despite the small sample size by allowing us to incorporate data from a previous similar study. We suggest that this method is likely to be useful for the analysis of small diagnostic or predictive studies when prior information is available.
BACKGROUND: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses' concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered.
AIM: The aim was to explore nurses' experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief.
DESIGN: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique.
SETTING/PARTICIPANTS: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia.
RESULTS: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one's job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief.
CONCLUSION: Education is urgently required to strengthen nurses' knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients.
Good symptom management in oncology is associated with improved patient and family quality of life, greater treatment compliance, and may even offer survival advantages. With population growth and aging, the proportion of patients with multiple symptoms-both related and unrelated to their cancer-is anticipated to increase, supporting calls for a more routine and integrated approach to symptom management. This article presents a summary of the literature for the use of symptom assessment tools and reviews the management of four common and distressing symptoms commonly experienced by people with advanced cancer: pain, breathlessness, nausea and vomiting, and fatigue. We also discuss the role of palliative care in supporting a holistic approach to symptom management throughout the cancer trajectory.
Palliative care is seeing cancer patients earlier in the disease trajectory with a multitude of chronic issues. Chronic non-malignant pain (CNMP) in cancer patients is under-studied. In this prospective study, we examined the prevalence and management of CNMP in cancer patients seen at our supportive care clinic for consultation. We systematically characterized each pain type with the Brief Pain Inventory (BPI) and documented current treatments. The attending physician made the pain diagnoses according to the International Association for the Study of Pain (IASP) task force classification. Among 200 patients (mean age 60 years, 69% metastatic disease, 1-year survival of 77%), the median number of pain diagnosis was 2 (IQR 1-2); 67 (34%, 95% CI 28-41%) had a diagnosis of CNMP; 133 (67%) had cancer-related pain; and 52 (26%) had treatment-related pain. In total, 12/31 (39%) patients with only CNMP and 21/36 (58%) patients with CNMP and other pain diagnoses were on opioids. There was a total of 94 CNMP diagnoses among 67 patients, including 37 (39%) osteoarthritis and 20 (21%) lower back pain; 30 (32%) were treated with opioids. In summary, CNMP was common in the timely palliative care setting and many patients were on opioids. Our findings highlight the need to develop clinical guidelines for CNMP in cancer patients to standardize its management.
Background: Alexithymia, or difficulty identifying and describing emotions and sensations, contributes to an increased risk of chronic pain, and low help-seeking.
Objective: To investigate whether family caregivers of advanced cancer patients visiting a palliative care department had alexithymia, and whether this was related to their pain intensity, personalized pain goals, and help-seeking for chronic musculoskeletal pain.
Design: A single-center cross-sectional survey.
Measurements: Pain intensity was evaluated using a numerical rating scale. Pain improvement was evaluated against personal goals. Alexithymia was assessed using the Toronto Alexithymia Scale-20 (TAS-20), and anxiety and depression using the Hospital Anxiety and Depression Scale.
Setting/Subjects: Of 320 family caregivers visiting the palliative care department, 152 (47.5%) had chronic musculoskeletal pain; all 152 were included in the study.
Results: Alexithymia was observed in 36.2% of participants. Participants with higher scores on the TAS-20 tended to have higher pain intensity scores and personal pain goal scores. TAS-20 score had the strongest correlation with personal pain goals, with a correlation coefficient of 0.555 (p < 0.001).
Conclusions: Pain intensity in family caregivers with alexithymia tended to be high. These participants set higher personal pain goals (lower goals for symptom improvement) than those without alexithymia. We found no difference in personal pain goal response between family caregivers with and without alexithymia. When we examine pain in family members with alexithymia who are caring for cancer patients, we need to recognize that they may set higher personal pain goals and seek less help.
Objective: This study was part of a comprehensive perspective, and aiming to propose a draft protocol for assessing the severity of pain in schizophrenic patients suffering from somatic pathology, to see the characteristics of non-reactive to pain.
Patients, materiel and methods: This paper reports the observation from two clinical case that took place at the Saint-Vincent-de-Paul hospital in Dschang (Cameroon). Documentary research was conducted using Google, Google Scholar, Scielo, PubMed, Medline and Interagency Pain Research Portfolio as main search engines and databases. The main keywords were schizophrenia, pain, and psychosis, psychotic, schizophrenic. A clinical experimental protocol with control cases and respect of ethical rules was used.
Result: The patients with schizophrenia also showed insensitivity/low sensitivity to pain. Control cases showed a reaction indicating that the pain was severe.
Conclusion: The present study concludes on the proposal of a triangulation device for the evaluation of pain in schizophrenic patients with somatic pathologies.
Depuis l'Oregon Death with Dignity Act adopté en 1997, la dépénalisation de l'euthanasie aux Pays-Bas en 2001, puis en Belgique l'année suivante, de plus en plus de personnes demandent l'euthanasie ou en considèrent la possibilité.
Purpose: Opioids reduce cancer-related pain but an association with shorter survival is variably reported.
im: To investigate the relationship between pain, analgesics, cancer and survival within the European Palliative Care Cancer Symptom (EPCCS) study to help inform clinical decision making.
Methods: Secondary analysis of the international prospective, longitudinal EPCCS study which included 1739 adults with advanced, incurable cancer receiving palliative care. In this secondary analysis, for all participants with date of death or last follow up, a multilevel Weibull survival analysis examined whether pain, analgesics, and other relevant variables are associated with time to death.
Results: Date of death or last follow-up was available for 1404 patients (mean age 65.7 [SD:12.3];men 50%). Secondary analysis of this group showed the mean survival from baseline was 46.5 (SD:1.5) weeks (95% CI:43.6–49.3). Pain was reported by 76%; 60% were taking opioids, 51% non-opioid analgesics and 24% co-analgesics. Opioid-use was associated with decreased survival in the multivariable model (HR = 1.59 (95% CI:1.38–1.84), p < 0.001). An exploratory subgroup analysis of those with C-reactive protein (CRP) measures (n = 219) indicated higher CRP was associated with poorer survival (p = 0.001). In this model, the strength of relationship between survival and opioid-use weakened (p = 0.029).
Conclusion: Opioid-use and survival were associated; this relationship weakened in a small sensitivity-testing subgroup analysis adjusting for CRP. Thus, the observed relationship between survival and opioid-use may partly be due to tumour-related inflammation. Larger studies, measuring disease activity, are needed to confirm this finding to more accurately judge the benefits and risks of opioids in advanced progressive disease.
Well-designed, rigorously implemented instrumentation studies are essential to develop valid, reliable pain assessment tools in non-communicative (non-self-reporting) palliative care patients. When conducting a pain instrumentation study, a research team identified methodologic challenges surrounding informed consent, eligibility criteria, acute pain operational definitions, patient recruitment, missing data, and study-related training during a run-in phase at the beginning of the project and during the conduct of the study. The team dealt with these challenges through identifying root causes, implementing remedial measures, and collecting data to demonstrate improvement or resolution. Effective strategies included obtaining Institutional Review Board (IRB) approval for a waiver of informed consent, modifying eligibility criteria, ensuring that operational definitions and study procedures were consistent with clinical practice, decreasing time from screening to data collection to improve recruitment, increasing study nurse staffing by re-budgeting grant funds, focusing time and resources on high accruing clinical units, revising processes to minimize missing data, and developing detailed training for users of the instrument. With these multi-pronged solutions, the team exceeded the patient accrual target by 25% within the funding period and reduced missing data. While pain instrumentation studies in non-communicative patients have similar challenges to other palliative care studies, some of the solutions may be unique and several are applicable to other palliative care studies, particularly instrumentation research. The team's experience may also be useful for funders and IRBs.
PURPOSE: Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical-psychological-social-spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients' inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients' altered awareness of time/space/body and patients' altered social connectedness.
METHOD: Two interdisciplinary teams observed 80 dying patients with cancer in palliative units at 2 Swiss cantonal hospitals. We applied participant observation based on semistructured observation protocols, supplemented by the list of analgesic and psychotropic medication. Descriptive statistical analysis and Interpretative Phenomenological Analysis (IPA) were combined. International interdisciplinary experts supported the analysis.
RESULTS: Most patients showed at least fear and pain once. Many seemed to have spiritual experiences and to undergo a transformation of perception only partly depending on medication. Line graphs representatively illustrate associations between fear/pain/denial/spiritual experiences and a transformation of perception. No trajectory displayed uninterrupted distress. Many patients seemed to die in peace. Previous near-death or spiritual/mystical experiences may facilitate the dying process.
CONCLUSION: Approaching death seems not only characterized by periods of distress but even more by states beyond fear/pain/denial.