Jean-Pierre Gaume nous propose des clés pour transformer la relation malade - médecin en une véritable communication permettant ainsi au patient de se relier à sa maladie et de la vivre comme un langage porteur de sens. Pour parvenir à ce résultat, l'auteur a proposé dans son livre un guide de bonnes pratiques pour favoriser une écoute active et participative. Ce livre qui s'adresse à tous les soignants soucieux d'améliorer leur relation avec les malades, séduit par la richesse de son contenu et de sa documentation qui s'appuie sur plus de 190 références bibliographiques tirées de la littérature médicale, philosophique, historique, psychanalytique et éthique.
Jean-Pierre Gaume, à travers ses 40 années de médecine générale et ses 20 années d'enseignement de la discipline à la faculté de médecine, nous montre comment nous méfier des seules méthodes diagnostiques dépendantes de la biologie moléculaire, des isotopes ou de l'imagerie moderne pour accéder à la vérité du malade.
OBJECTIVES: The use of drugs beyond their marketing authorisation, that is, off-label use, is common practice in palliative care with over 70% of off-label use having little or no scientific support. The lack of evidence makes recommendations for off-label use essential, in order to increase the safety of drug therapy and thus patient safety. The aim of this study was to develop a guide for preparing and consenting drug-specific recommendations for off-label use in palliative care.
METHODS: Group Delphi Study with three rounds and a prior online survey to identify topics of dissent. Participants represented professional groups working in palliative care involved in direct patient care and/or drug management and various care settings. Furthermore, representatives of relevant professional associations, experts with academic, non-clinical background and experts with international expertise were invited.
RESULTS: 18/20 invited professionals participated in the prior online-survey. 15 experts participated in the Group Delphi process. Six domains, including identification of drugs, drug uses, assessment of evidence, formulation, consensus and updating of recommendations were generated and respective statements were included in the Group Delphi process. The consensus process resulted in 28 statements forming the guide for recommendations.
CONCLUSIONS: The resultant systematic approach for preparing and consenting drug-specific recommendations for off-label use will allow the development of recommendations with transparent and reproducible monographs. This will help to increase treatment quality and patient safety as well as security of decision-making in palliative care. The developed guide is part of a larger project aiming to provide therapy recommendations for areas that have little or no scientific evidence.
The purpose of this article is to describe palliative care incorporation within the care of heart transplant patients. Palliative care is a holistic approach to care that includes symptom management and goal setting to improve patients’ quality of life. Palliative care is designed to be used with patients who have chronic illness that impacts quality of life and should be incorporated early in the disease. All providers have a responsibility to be knowledgeable in palliative care approaches and to know when to refer a patient for specialty palliative care services. This article will describe palliative care, research study findings, and current professional guideline recommendations for patients. The article also describes challenges and barriers to the use of palliative care in heart transplant patients and strategies to address these challenges and barriers.
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.
BACKGROUND: Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet.
METHODS: A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet.
RESULTS: Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future.
CONCLUSIONS: The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia.
BACKGROUND: Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences.
METHODS: The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points.
DISCUSSION: This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov: NCT03676283.
Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.
BACKGROUND: Racial and ethnic minorities are at risk for disparities in quality of care after out-of-hospital cardiopulmonary arrest (OHCA). As such, we examined associations between race and ethnicity and use of guideline-recommended and life-sustaining procedures during hospitalizations for OHCA.
METHODS: This was a retrospective study of hospitalizations for OHCA in all acute-care, non-federal California hospitals from 2009 to 2011. Associations between the use of (1) guideline-recommended procedures (cardiac catheterization for ventricular fibrillation/tachycardia, therapeutic hypothermia), (2) life-sustaining procedures (percutaneous endoscopic gastrostomy (PEG)/tracheostomy, renal replacement therapy (RRT)), and (3) palliative care and race/ethnicity were examined using hierarchical logistic regression analysis.
RESULTS: Among 51,198 hospitalizations for OHCA, unadjusted rates of cardiac catheterization were 34.9% in Whites, 19.8% in Blacks, 27.2% in Hispanics, and 30.9% in Asians (P < 0.01). Rates of therapeutic hypothermia were 2.3% in Whites, 1.1% in Blacks, 1.3% in Hispanics, and 1.9% in Asians (P < 0.01). Rates of PEG/tracheostomy and RRT were 2.2% and 9.8% in Whites, 5.7% and 19.9% in Blacks, 4.2% and 19.9% in Hispanics, and 3.4% and 18.2% in Asians, respectively (P < 0.01). Rates of palliative care were 14.8% in Whites, 9.6% in Blacks, 10.1% in Hispanics, and 14.3% in Asians (P < 0.01). Differences in utilization of procedures persisted after adjustment for patient and hospital-related factors.
CONCLUSION: Racial and ethnic minorities are less likely to receive guideline-recommended interventions and palliative care, and more likely to receive life-sustaining treatments following OHCA. These findings suggest that significant disparities exist in medical care after OHCA.
BACKGROUND: Guidelines are intended to facilitate knowledge translation and evidence-based clinical decision-making, but they vary in methodological rigor and quality. The present study was conducted to assess the quality of guidelines available on end-of-life care in patients with cancer using AGREE II.
METHODS: A comprehensive search was carried out in EMBASE (Excerpta Medica Database), MEDLINE/PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and gray literature sources until December 2016. The quality of the guidelines was assessed independently by five appraisers using the Appraisal of Guidelines for Research and Evaluation, 2nd edition (AGREE II). To promote consistency with available studies using AGREE II and identify high-quality guidelines, the AGREE II scores were also categorized as "Strongly recommended," "Recommended with modifications," or "Not recommended."
RESULTS: A total of 8 guidelines were included in this study. Five of the guidelines were developed based on evidence and two by consensus and one provided no information about its method of development. The highest mean score (82.77%) pertained to "Clarity of presentation" and the lowest to "Editorial independence" (44.80%). Based on the AGREE II results, three guidelines were "Strongly recommended," four were "Recommended with modifications," and one was "Not recommended."
CONCLUSION: Despite the variations in the quality and strength of the recommendations, a number of guidelines are currently available on end-of-life care. Health team members should be aware of this variability.
Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG). The Guide entails four steps: thinking about the current caregiving situation, imagining how the caregiving situation may change, exploring available options, and considering best options if caregiving needs change. The FCDG was based on available evidence and was developed and refined using focus groups, cognitive interviewing, and a feasibility and acceptability study. Finally, an interactive version of the Guide was created for online use ( https://www.caregiverdecisionguide.ca ). In this article, we describe the development, evaluation, and utility of the FCDG.
Despite UK national guidance on care after death, it is clear that the bereaved family can experience distress while waiting for the patient's death to be verified. This distress can escalate if there is a delay in verification. Anecdotally, such delays particularly occur out of hours and in community settings. Verification of death is a clinical task and an act of care whereby the identity of the person and death is confirmed. In addition, the subsequent providers of care to the deceased, such as families, mortuary teams, funeral directors and cremation services, have their health and safety protected by the provision of pertinent patient-specific information, for instance, infection risk and implantable devices, within the bounds of confidentiality. During this time, the bereaved family may also receive emotional support and information from the skilled clinician. Registered Nurse Verification of Expected Adult Death (RNVoEAD) guidance and associated competencies have recently been developed to ensure that the registered nurses involved in the patient's care can feel confident about their responsibilities and competent in the process of verifying death. It is hoped that this guidance will help to avoid delays that may cause additional distress to grieving families. This article sets out the rationale for the guidance, as well as discussing outstanding concerns and proposals for future considerations.
Background: Research in Taiwan has indicated that advance care planning is rarely undertaken in long-term care facilities. The purpose of this study was to develop an advance care planning interview guideline and care model to facilitate the process of advance care planning for residents and their families in long-term care facilities.
Methods: This study follows an action research design. Cycles of planning, action, observation, and reflection were planned and modified based on the results of interviews with residents and their families as well as meetings with staff. To establish the interview guideline and care model through this action research study, residents and their families were interviewed separately. The researcher subsequently held meetings with staff members to evaluate the results and identify problems during each advance care planning process. This information was synthesised and used to modify the care model for implementation with the next resident–family pair. This process was performed a total of ten times.
Results: This study included residents (N = 10), their families (N = 20), and medical staff (N = 4) at a long-term care facility. The interviews and meetings were audio recorded, transcribed, and subjected to a simple thematic analysis together with the field notes and reflection logs. Four themes emerged from the data related to: opening the conversation with the interview guidelines about the life story of residents; continuing life stories to the quality of remaining years of the residents; gradually changing the topic to the end-of-life care issues; and concluding the conversation by explaining the content of advance directives and hospice care.
Conclusions: The advance care planning care model was implemented following logical thinking from a Chinese perspective. This consisted of opening, developing, changing, and concluding through the views of Confucianism, Buddhism, and Taoism. The research findings indicate that the model successfully facilitated the process of advance care planning for residents and their families.
BACKGROUND: Euthanasia and assisted suicide laws in the Netherlands require physicians meet clinical guidelines when performing the practice to ensure death is peaceful and painless. Despite oversight by the regional review committees over each case, little research exists into the frequency of guideline deviation and the reasons for nonadherence.
METHODS: Cases reported and reviewed between 2012 and 2017 that did not meet due medical care were analysed for thematic content. Semistructured interviews were conducted with 11 Dutch physicians on their experience with the clinical and pharmacological elements of euthanasia and assisted suicide, their interaction and comportment with the recommended guidelines, and reasons why guideline deviation might occur. Reported case reviews and interviews were used to obtain themes and subthemes to understand how and why deviations from clinical guidelines happened.
RESULTS: Violations of due medical care were found in 42 (0.07%) of reported cases. The regional review committees found physicians in violation of due medical care mostly for inadequate confirmation of coma-induction and deviations from recommended drug dosages. Physicians reported that they rarely deviated from the guidelines, with the most common reasons being concern for the patient's family, concern over the drug efficacy, mistrust in the provided guidelines, or relying on the poor advice of pharmacists or hospital administrators.
CONCLUSIONS: Deviations from the guidelines and violations of due medical care are rare, but should nonetheless be monitored and prevented. A few areas for improvement include skills training for physicians, consistency between review committee rulings, and further clarity on dosage recommendations.
Advance care planning (ACP) is an increasingly important topic in primary care as more patients with multiple comorbidities and chronic diseases are living longer owing to advances in medical treatment. Family physicians are well positioned to guide ACP discussions given the longitudinal care they provide, yet many physicians, including resident physicians, feel uncomfortable directing these conversations. In this article we will describe ACP and its importance, as well as present a framework that we have developed to guide the ACP process.
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This guideline covers organising and delivering end of life care services, which provide care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this. It aims to ensure that people have access to the care that they want and need in all care settings. It also includes advice on services for carers.
Ce guide « grand public » répond aux questions et donne tous les renseignements utiles aux centaines de milliers de personnes qui s’inquiètent pour leurs proches (proches en fin de vie, parents âgés, enfants majeurs handicapés, …), et qui cherchent des réponses à leurs questions : comment agir avec ou à la place de ce proche ? Faut-il une mesure de protection ou pas, et à partir de quand ? Comment s’y prendre ? Dois-je être tuteur, curateur, ou non ? Si oui, quelles contraintes, en serai-je capable ? A qui m’adresser ? Si non, comment fonctionner avec le mandataire professionnel nommé par le juge des tutelles ?...
Ce guide s’adresse également à ceux qui sont déjà chargés d’une mesure de protection d’un proche, et qui souhaitent être conseillés dans cette tâche.
Ecrit par deux praticiens, ce guide pédagogique et pragmatique comprend toutes les références des formulaires officiels, ainsi que les modèles et exemples de courriers nécessaires. Il est à jour de la loi « Justice » du 23 mars 2019, qui a modifié sur de nombreux points les règles applicables aux mesures de protection.
Background: Spirituality is important for many family members of patients in the intensive care unit (ICU). Clinicians without training in spiritual care experience difficulty identifying when family members are experiencing distress of a spiritual nature.
Objective: The purpose of this study was to develop a guide to help clinicians working in the ICU identify family members who may benefit from specialized spiritual support.
Design: ross-sectional study.
Setting/Subjects: A national sample of spiritual health practitioners, family members, and ICU clinicians.
Subjects: A panel of 21 spiritual health practitioners participated in a modified Delphi process to achieve consensus on items that suggest spiritual distress among family members of patients in the ICU through three rounds of remote review followed by an in-person conference and a final round of panelist feedback. Feedback on the final set of items was obtained from an end-user group of four family members and six ICU clinicians.
Measurements: A total of 220 items were iteratively reviewed and rated by panelists. Forty-six items were identified as essential for inclusion and developed into a clinical guide, including an introduction (n = 1), definitions (n = 2), risk factors (n = 10), expressed concerns (n = 12), emotions (n = 7) and behaviors (n = 7) that may suggest spiritual distress, questions to identify spiritual needs (n = 6), and introducing spiritual support (n = 1).
Conclusions: We have developed an evidence-informed clinical guide that may help clinicians in the ICU identify family members experiencing spiritual distress.
Bereavement care practice guidelines assist in delivering high-quality bereavement care. However, the quality of published guidelines is unknown. A systematic review was conducted to identify and evaluate the quality of the process used to develop bereavement care practice guidelines using the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument. A keyword search was conducted in MEDLINE-Complete, CINAHL-Complete, Health-Source (Nursing/Academic Edition), Psychology and Behavioral Sciences Collection, and an internet search engine in October 2017. Sixteen guidelines with differing scope and purpose but similar core values were identified from the grey literature and then appraised at high quality (n = 1), moderate quality (n = 4), or low quality (n = 11). The domains "clarity of presentation" and "scope and purpose" achieved the highest scores (mean ± SD 71.0 ± 27.6% and 64.4 ± 37.5%, respectively), while "editorial independence" showed the lowest mean score (9.2 ± 13.3%). While few of the bereavement care practice guidelines met the AGREE II quality standards related to their development process, neither the quality of the content of each guideline nor the in-context application was assessed by the AGREE II instrument. Ongoing development of practice guidelines may benefit from consideration and application of the framework outlined in the AGREE II or similar appraisal instrument.