La sclérose latérale amyotrophique (SLA) est une maladie neurodégénérative incurable. Elle est responsable d'une dépendance croissante au cours de son évolution et nécessite le recours à des techniques de suppléance vitales. Elle peut constituer un modèle relevant d'une prise en charge palliative. Celle-ci est pourtant tardive. Il existe de véritables enjeux légaux et éthiques à aborder précocement ce type de soins. L'élaboration de directives anticipées permet de respecter l'autonomie du patient. La maladie grave rend pourtant leur élaboration difficile. L'information du patient sur les possibilités thérapeutiques curatives mais aussi palliatives peut faciliter l'expression de ses souhaits. L'approche palliative précoce dans la SLA facilite le dialogue autour de la fin de vie et pourrait faciliter les choix du patient mais aussi du médecin.
RESEARCH QUESTION: How does the process of engagement and integration of sources of information outside patient-physician interaction affect how individuals with cancer interpret their treatment experience and prognosis?
BACKGROUND: Studies of patient-physician communication of prognosis in oncology highlight areas where misunderstanding occurs: understanding consequences of treatment, likelihood of treatment success, probability of cure, status/progression of illness, and prognosis. Theories proposing mechanisms that underlie this discrepancy cannot account for all instances of misunderstanding, including when complete and direct physician disclosure occurs. Prior research focused on patient-physician communication event(s) and immediate antecedents and consequences. However, less is known about what happens to information once it has been communicated and how a patient's process to interpret the meaning of their experience affects their understanding of it. Our study explores this question by examining patient communication with sources of information other than treating physicians.
METHODOLOGY: We conducted 10 semi-structured qualitative interviews with individuals diagnosed with 4 types of cancer at different stages. The interviews were analyzed using inductive qualitative analysis.
RESULTS: Participants in our sample consulted a variety of additional sources to give context and understanding to their communicated prognosis. These were important contributors to how they understood their prognosis and incorporated that understanding. They included family, friends/acquaintances, cancer survivors, support/survivor groups, secondary health-care staff, and relevant informational materials. Different motivations for seeking out these sources were also expressed. Participants expressed a link between their understanding of their prognosis and the variety of outside sources they enlisted for input and support.
The diagnosis of cancer for anyone is a time of fear and uncertainty. For young adults (YAs) diagnosed with acute leukemia (AL), there are the additional challenges related to lengthy aggressive in-hospital treatment, multiple concurrent symptoms, and decreased well-being. The purpose of this study was to explore the experiences of YAs with AL undergoing induction chemotherapy. This study used a nested qualitative longitudinal design with a convenience sample. Qualitative data were collected using semistructured interviews, and participants were invited to maintain journals. The semistructured interviews were audiotaped, transcribed, and loaded into Atlas.ti for analysis. Common themes and categories were verified and used to disseminate the findings. Seven YAs, mean age 32 (SD, 4) years, participated in this study. Three thematic classifications emerged: getting through, supported yet isolated, and information exchange preferences, which detail how these YAs processed and coped during treatment. The findings from this study provide important insights for nurses regarding coping mechanisms that YAs apply, which included relying on technology and social media platforms. Additionally, the YAs in this study discussed their need for information. The findings from this study may provide insights for clinicians currently caring for YAs with AL, while also directing future palliative care research endeavors.
This study investigated the association between patient characteristics and the occurrence of pressure injuries for patients at the end of life. A retrospective study was conducted using data collected from 2062 patients at the end of life between January 2007 and October 2015. In addition to demographic data and pressure injury risk assessment scale scores, injury history, disease type, and length of hospitalization were revealed as the major independent variables for predicting the occurrence of pressure injuries.
Although shared decision-making is a standard in medical care, unilateral decisions through process-based conflict resolution policies have been defended in certain cases. In patients who do not stand to receive proportional clinical benefits, the harms involved in interventions such as cardiopulmonary resuscitation seem to run contrary to the principle of non-maleficence, and provision of such interventions may cause clinicians significant moral distress. However, because the application of these policies involves taking choices out of the domain of shared decision-making, they face important ethical and legal problems, including a recent challenge to their constitutionality. In light of these concerns, we suggest a re-conceptualization of informed non-dissent as an alternative approach in cases where the application of process-based policies is being considered. This clinician-directed communication model still preserves what is valuable in such policies and salvages professional integrity, while minimising ethical and legal challenges.
BACKGROUND: The doctor-patient relationship has evolved to respect "the autonomy and patients' rights". One of the cornerstones in such autonomy is the opportunity for patients to draw living wills, also known as advance directives (AD). However, information about AD available to patients remains scarce largely due to the lack of involvement of General practitioners for several reasons. The aim of our study was to evaluate current general practitioner residents' (GPR) behavior concerning their role in informing their patients about AD.
METHOD: We built a French nationwide survey from GPR class of 2012 to 2014.
RESULTS: Two thousand three hundred ten residents completed our survey (21.1% of the total population of GPR during the period). 89.8% declared their willingness to offer patients the opportunity of writing AD. When asked about the usefulness of AD, 73.6% of residents responded that these are a suitable help for patients, but 19.7% considered that AD are essentially geared towards frail patients. Among residents who want to inform patients about AD (n = 2075), 14.7% wanted to involve all patients. Only 20.5% thought that elderly people should be systematically informed about AD. When the question involves other frail people in various disease areas, information seems relevant for 60.1% of GPR considering patient with cancer or malignant hematologic disease and for 56.2% about patients affected by neurodegenerative disease. When considering the routine use of AD, 20.5% of GPR would take them into account only if they are in agreement with the patient’s decision.
CONCLUSIONS: The results of the survey indicate that GPR would rather choose to decide who should be informed about AD, and when to take AD into account for ethical concerns.
Background: Routine imaging (“scan”) results contain key prognostic information for advanced cancer patients. Yet, little is known about how accurately patients understand this information, and whether psychological states relate to accurate understanding.
Objective: To determine if patients' sadness and anxiety, as well as results showing poorer prognosis, are associated with patients' understanding of scan results.
Design: Archival contrasts performed on multi-institutional cohort study data.
Subjects: Advanced cancer patients whose disease progressed after at least one chemotherapy regimen (N = 94) and their clinicians (N = 28) were recruited before an oncology appointment to discuss routine scan results.
Measurements: In preappointment structured interviews, patients rated sadness and anxiety about their cancer. Following the appointment, patients and clinicians reported whether the imaging results discussed showed progressive, improved, or stable disease.
Results: Overall, 68% of patients reported their imaging results accurately, as indicated by concordance with their clinician's rating. Accuracy was higher among patients whose results indicated improved (adjusted odds ratio [AOR] = 4.12, p = 0.02) or stable (AOR = 2.59, p = 0.04) disease compared with progressive disease. Patients with greater anxiety were less likely to report their imaging results accurately than those with less anxiety (AOR = 0.09, p = 0.003); in contrast, those with greater sadness were more likely to report their results accurately than those with less sadness (AOR = 5.23, p = 0.03).
Conclusions: Advanced cancer patients with higher anxiety and those with disease progression may need more help understanding or accepting their scan results than others.
AIM: To describe and explain the process of transition from cure-focused to comfort-focused healthcare as perceived and reported by patients, family members and healthcare providers.
BACKGROUND: Moving into the last phase of life due to advanced illness constitutes a developmental transition with increased vulnerability for patient and family.
DESIGN: Qualitative metasynthesis.
DATA SOURCES: Medline, CINAHL and PsycInfo databases, searched from inception through March 2016. Primary research reports published from 1990 to 2015, using qualitative designs to report transition experiences of patients, family members and/or healthcare providers were included.
REVIEW METHODS: Key elements were extracted and organized into matrices. Findings from each report were analyzed using qualitative coding.
RESULTS: The sample was 56 unique reports from 50 primary studies. Patients and families emphasized the importance of receiving understandable information, emotional support, respect for personhood and control. The critical juncture of 'realizing terminality' preceded a transition to comfort-focused care. Subsequently, a shift in goals of care emphasizing comfort and quality of life could occur. Continued provision of information, effective support, respect and control promoted 'reframing perceptions' and capacity to embrace a changed identity. Reframing allowed patient and family to find meaning and value in this last phase of life and to embrace the opportunity to prepare for death, nurture relationships and focus on quality of living.
CONCLUSION: Understanding the developmental process that can be engaged by patients and families at end of life provides a theoretical basis that can inform choice and timing of interventions to reduce suffering and enhance positive outcomes.
Les établissements médicosociaux, et plus spécifiquement les MAS (Maisons d'Accueil Spécialisées) et les FAM (Foyers d'Accueil Médicalisé), sont particulièrement concernés par la question de l'accompagnement en soins palliatifs et en fin de vie : parce qu'ils accueillent un public vieillissant, mais aussi parce qu'ils sont amenés à accompagner des situations de plus en plus complexes. Pour les personnes polyhandicapées ou atteintes d'un handicap sévère, l'entrée en établissement représente souvent le choix d'un lieu de vie définitif : c'est le lieu où elles vont vivre et finir leur vie, parfois prématurément du fait de leur vulnérabilité. Ces personnes et leur famille ont souvent eu à vivre déjà des deuils successifs : celui de la "bonne santé", de la vie au domicile, de l'autonomie et d'une certaine indépendance dans les activités du quotidien. Il appartient ainsi aux institutions d'inscrire la dimension palliative dans leur projet d'établissement. Pourtant, cette démarche semble parfois difficile : le rapport sur la fin de vie dans les établissements pour personnes adultes handicapées réalisé par l'Observatoire National de la Fin de vie en 2013 évoque ainsi une "fin de vie invisible". L'accompagnement palliatif en MAS et en FAM peut en effet soulever de nombreuses questions : à partir de quand une personne atteinte d'une pathologie évolutive et incurable relève-t-elle de soins palliatifs ? En quoi consiste un accompagnement en fin de vie, quand commence-t-il ? Quel est le cadre légal, et comment s'applique-t-il aux établissements médicosociaux ? Comment recueillir l'expression de la volonté de personnes dyscommunicantes, comment évaluer et soulager leur douleur ? Comment accompagner ces personnes, mais aussi leurs proches et les autres résidents de l'établissement ? Jusqu'où doit-on aller ? L'ensemble de l'équipe doit-il être impliqué ? C'est pour réfléchir collectivement à ces différentes questions que le groupement des MAS et FAM a décidé, en décembre 2015, de mettre en place un groupe de travail sur la démarche palliative en MAS et en FAM. Ce groupe a concrétisé deux projets : l'organisation d'une journée d'étude régionale (le 17 novembre 2017), et la réalisation de cette étude.
Origine : BDSP. Notice produite par CREAIORSLR r7R0xBDr. Diffusion soumise à autorisation
Background: Cancer patients with advanced disease are confronted with increasingly complex life-prolonging/symptom-relieving treatment decisions. Being informed of treatment benefits and risks is important, but information provision might be suboptimal.
Objective: To assess the extent to which patients with incurable cancer feel informed about benefits and risks of possible treatments, and whether this relates to their self-perceived receipt of person-centered care.
Methods: Patients with incurable cancer (N = 212) reported the degree to which they felt informed about treatment benefits/risks. Person-centered care was operationalized as â€œfeeling involved in careâ€ and â€œfeeling that preferences were taken into accountâ€. (Logistic) regression analyses assessed the relationship between feeling informed and receiving person-centered care, exploring moderating influences of background characteristics.
Results: Two-thirds (66%) of patients felt incompletely informed about treatment benefits/risks. Two-thirds (65%) of patients felt that they were always involved in their care, and 60% felt their preferences were taken into account by all providers. If patients felt completely informed, they also felt they received more person-centered care (p = < 0.01). Seventy six percent and 81% of completely informed versus 58% and 50% of incompletely informed patients felt that they were, respectively, always involved and that preferences were taken into account by all providers. Background characteristics did not moderate these relationships, but influenced perceptions of received information and person-centered care.
Conclusions: Complete information provision about treatment benefits and risks is, according to patients, not commonplace. Yet such information is related to receiving person-centered care. More research into what specific information is preferred, provided, and remembered is warranted, to achieve optimal person-centered care.
BACKGROUND: Medical decision-making has evolved to the modern model of shared decision-making among patients, surrogate decision-makers, and medical providers. As such, informed consent discussions with critically ill patients often should include larger discussions relating to values and goals of care. Documentation of care options and prognosis serves as an important component of electronic communication relating to patient preferences among care providers.
OBJECTIVE: This retrospective chart review study sought to evaluate the prevalence of documentation of critical data, care options, prognosis, and medical plan, within primary team and palliative care consult team documentation.
RESULTS: Three hundred two electronic medical records were reviewed. There was a significant difference in documentation between palliative care and primary teams for prognosis (83% vs 32%, P < .001), care options (82% vs 50%, P < .001), and care plan (82% vs 46%, P < .001).
CONCLUSIONS: Our retrospective chart review study demonstrated a significant difference in documentation between primary and palliative care teams. We acknowledge that review of documentation cannot be extrapolated to the presence or absence of conversations between providers and patients and/or surrogates. Additional studies to evaluate this connection would be advantageous.
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan.
DESIGN AND METHODS: This study employed a qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1â€“12 years with a condition eligible for palliative care who received health care in one of these units, and their most involved carers (e.g. mother, physician and nurse). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and nurses. Ethical approval was obtained from the hospital ethical review board. Written consent was obtained from all participants.
RESULTS: Qualitative case studies were developed around 15 children (aged 1â€“12 years, nine were boys and six were girls, with varying diagnoses: renal disease, neurological conditions, and congenital heart defects). A total of 197 observational hours and 60 interviews were completed (15 mothers, 12 physicians and 21 nurses). The findings demonstrate that the practice of â€˜mutual protectionâ€™ dominated communication between children, parents and clinical staff. Parents protected their children by disclosing only partial information about their disease, and by avoiding any information they thought would cause the child distress or loss of hope. Similarly, children avoided expression to their parents of their anxieties or fears, in order to protect them. In turn, nurses attempted to ensure observance of professional boundaries with children and mothers to avoid a sense of loss when a child died.
PRACTICAL IMPLICATIONS: The provision of ongoing education and specialised training for professionals to provide them with culturally sensitive skills in communication and provision of emotional support for children and parents is needed to improve clinical practice in healthcare settings with limited access to specialist palliative care such as Jordan.
Les directives anticipées (DA) ne sont pas suffisamment appliquées en milieu hospitalier gériatrique malgré leur large diffusion depuis la publication de la loi Claeys-Leonetti. Lâ€™objectif de cette étude était dâ€™analyser lâ€™état des connaissances des gériatres sur la notion des directives anticipées et dâ€™évaluer leurs pratiques dans le processus dâ€™information du patient et du recueil des DA.
Does the patient know of his or her illness? Of 80 patients with whom we had a close relationship, 45 were completely clear about it and 17 patients partially knew. The supposition we hear so often that cancer patients in a serious condition do not know what their illness is, so don't speak to them, is not correct at all.
[Extrait du résumé]
Objective: To explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs).
Methods: A cross-sectional survey was conducted within four multidisciplinary palliative homecare teams (HCTs), 17 hospital-based palliative care units (PCUs) and 13 hospital-based mobile palliative support teams (PSTs) in Belgium. During four measurement periods, structured questionnaires were administered to people being guided by PCSs and relatives of patients who had died while under the care of PCSs.
Results: In total, 628 patients (80%) and 980 relatives (55%) responded; 73-82% and 75-77% respectively reported having received the right amount of information. Compared with those receiving care within a PCU, those being supported by a PST were more likely to report suboptimal information provision and decision-making. Relatives of those who had died while under the guidance of a PST were also more likely to report suboptimal information provision than their PCU counterparts.
Conclusion: Although information provision to cancer patients and relatives being supported by PCSs is generally evaluated positively, evaluations depend on the type of service.
Practice implications: Information provided within PCUs offering highly personalised, continuous care appears to both groups more satisfactory than that provided by palliative care teams mainly supporting care staff.
Introduction: La France et la Pologne présentent un niveau de développement des soins palliatifs l’un des plus élevés dans le monde. Cependant, des différences existent en matière de sédation continue, maintenue jusqu’au décès (SCMJD), entre ces deux pays : la SCMJD étant un sujet très discuté en France et paraissant tabou en Pologne.
Objectif: Les objectifs opérationnels de cette étude étaient de : (1) mieux comprendre la construction des représentations sociales de la SCMJD faites par les médecins de soins palliatifs en France et en Pologne ; (2) explorer le contenu de l’information médicale délivrée aux malades ; (3) comprendre les convergences et les divergences entre les représentations et les pratiques de ces deux populations étudiées.
Méthode: Étude qualitative fondée sur des entretiens semi-directifs auprès de médecins exerçant dans des unités de soins palliatifs en France et en Pologne.
Résultats: Des divergences entre les représentations et les pratiques des médecins en France et celles des médecins en Pologne ont été observées ; une influence du contexte religieux ayant été identifiée chez ces derniers.
Discussion: Les résultats obtenus ont été discutés dans une approche interdisciplinaire à partir des notions philosophiques d’incertitude, de certitude, de mensonge stricto sensu et de mensonge par omission, montrant ainsi la nécessité d’une réflexion éthique dans la pratique quotidienne des médecins exerçant dans ces deux pays.
Conclusion: Cette étude demande à être complétée par d’autres investigations et ouvre diverses pistes européennes ou internationales à explorer, dans un souci d’amélioration des pratiques et de discussion éthique.
Introduction: There is enough evidence to suggest that early introduction to palliative care (PC) for patients with advanced cancer is beneficial. However, despite this, the patients often come late to PC physicians. There are a number of studies examining the preferences and practices of the physicians with respect to PC. However, there is limited literature exploring the patients' preferences and awareness regarding the PC services. This audit was done to identify the understanding and perceptions of PC in patients visiting PC outpatient department (OPD) and identify strategies to enhance their understanding.
Materials and Methods: This prospective cross-sectional study was conducted in 200 advanced cancer patients visiting PC OPD in a tertiary care hospital. The patients were asked to fill a questionnaire to assess their knowledge and expectations form PC on their first visit.
Results: Majority of the patients were from nearby areas and around 20% of them had to travel more than 300 km to receive palliative consultation. Unfortunately, majority of the patients had not heard the term PC before and were not aware of its meaning. Most of them (90%) were send to control pain which was too severe to be managed by the oncologists. We think that the major reason for the lack of awareness about PC services is limited availability across the country and lack of coordinated approach.
Conclusions: The main problem identified in the audit was the inadequate information, lack of PC setups, and late referral of the patients to PC. Hence, we should make a model where PC services are integrated with the curative services and offered throughout the illness after cancer diagnosis.
Comme en d'autres lieux, nous cherchons en soins palliatifs à prendre en compte le malade dans sa globalité. Aussi voulons-nous le considérer comme un sujet porteur d'une parole et d'un désir, et non comme un objet de soins.
[Début de l'article]
This study examined health-care provider planned responses to patient misunderstandings about end-of-life care using a multiple goals framework. Plan topics and content alignment with task, identity, and relational goal types were coded. Findings suggested that content was predominately task-oriented and concerned implications of treatment options such as choice outcomes and efficacy rates. A substantial percentage of providers planned to refer further discussion about the misunderstanding to another team member or occupational resource. Despite the prompt of patient misunderstanding, little attention was given to literacy and/or avoidance of medical jargon. Implications for these findings are discussed.
BACKGROUND: In the Canadian context, health literacy has been shown to depend on place of birth, education level, socioeconomic status, language spoken and geographic location. This study seeks to determine whether currently available advance directive documentation in Canada is written in accordance with the average reading level of the population and to assess whether recommendations for health literacy are currently being met.
METHODS: A cross-sectional study design was used. Patient-oriented English-language advance directive documents (brochures and/or forms) were obtained from the health agency websites of all Canadian provinces and territories and analyzed for readability using the Flesch-Kincaid Grade Level and Flesch Readability Ease scales.
RESULTS: Advance directives in Canada are distinct from one another and surpass the recommended reading level by 4.5 ± 1.4 grade levels on average (95% confidence interval 8.7-10.3) with the hardest-to-read documents existing in Ontario, Quebec and Alberta.
INTERPRETATION: These results demonstrate that the provincial and territorial governments issuing advance directive documentation have fallen short of their fiduciary responsibility to provide documents that facilitate health literacy. Addressing this shortcoming can result in increased patient engagement in advance directive completion while promoting patient autonomy.