The Epilepsy Deaths Register (EDR) differs from typical registries which concentrate primarily on clinical information. It is completed by bereaved relatives and focuses on the circumstances immediately before, and the support following, a death. It can be augmented by copies of death certificates from the families of the deceased, and all epilepsy associated deaths can be entered. The EDR is underpinned by the research and experience of the SUDEP Action team and the clinical advisors who helped design the methodology and the web-based platform. The EDR has been open since 2013 and currently has over 750 entries from over 20 different countries, the majority from the United Kingdom and the Republic of Ireland. The bereaved have shown that they place their trust in the register as a vehicle to be involved in research, even under the most difficult of circumstances. As the EDR matures, we hope to identify the common and rarer patterns of epilepsy-associated death; maintaining our dual ambitions to remain committed to listen, and to make every death count.
Cet article a pour objectif de présenter un livret d’information destiné aux patients d’une maladie lysosomale, à leurs familles et aux professionnels prenant soin d’eux. Ce livret tend à sensibiliser sur l’impact de la douleur chronique sur la qualité de vie et sur la démarche palliative. Les auteurs présentent le contexte de la construction de ce livret, son contenu et sa diffusion.
CONTEXT: Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs.
OBJECTIVES: Generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities.
METHODS: We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in 8 teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised 2 groups. Each cancer separately had 2 groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes.
RESULTS: A total of 45 people (13 clinicians, 24 patients, 8 caregivers) participated in the groups. The themes identified were: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD.
CONCLUSION: Patients, families and cancer clinicians have generally low knowledge of RMD but upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.
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.
Family meetings are important events in the care of hospitalized patients to ensure that patients and families understand what is happening medically, to support the patient and family emotionally, and to promote shared decision making.
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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.
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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 “feeling involved in care” and “feeling that preferences were taken into account”. (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 1–12 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 1–12 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 ‘mutual protection’ 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. L’objectif de cette étude était d’analyser l’état des connaissances des gériatres sur la notion des directives anticipées et d’évaluer leurs pratiques dans le processus d’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.
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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.