Depuis le début des années 2000, les soins palliatifs se sont considérablement développés au Québec et ailleurs dans le monde. Toutefois, avec les bouleversements démographiques qui transforment le paysage social de la plupart des pays occidentaux, le modèle actuel des soins palliatifs modernes pourrait être insuffisant pour faire face aux besoins grandissants de la population vieillissante. L'objectif de cet article est d'offrir un aperçu d'une vision complémentaire aux soins palliatifs modernes : le modèle des Communautés compatissantes. Développée par Allan Kellehear dans les années 2000, l'approche des Communautés compatissantes conçoit la fin de vie en tant qu'enjeu de santé publique, s'inspire de la promotion de la santé et propose un modèle sociocommunautaire aux soins de fin de vie. Dans cet article, les principaux fondements de l'approche des Communautés compatissantes seront présentés et illustrés par des exemples internationaux et locaux. Les défis et l'avenir de cette approche seront également évoqués.
Background: Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home.
Methods: This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state.
Discussion: The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process.
The organ transplantation enterprise is morally flawed. "Brain-dead" donors are the primary source of solid vital organs, and the transplantation enterprise emphasizes that such donors are dead before organs are removed-or in other words that the dead donor rule is followed. However, individuals meeting standard diagnostic criteria for brain death-unresponsiveness, brainstem areflexia, and apnea-are still living, from a physiological perspective. Therefore, removing vital organs from a heart-beating, mechanically ventilated donor is lethal. But neither donors nor surrogates nor the public in general are typically informed of this obviously relevant information. Therefore, donors or surrogates do not provide valid consent for a lethal medical procedure. This is a serious moral failing on the part of the transplant community. To address this concern, I advocate for accurate and fully transparent communication of information to the public to allow for an informed civic dialogue about the ethics and legality of lethal organ procurement. Furthermore, I advocate that systems be put in place by the transplant community to allow for valid consent for lethal organ procurement.
AIM: The purpose of the present study was to clarify the current state of awareness-raising activities to educate residents about decision-making regarding end-of-life care using a nationwide survey of municipalities in Japan.
METHODS: A cross-sectional questionnaire-based survey of all municipalities in Japan (n = 1741) was carried out. We asked one representative from each municipality whether or not there were ongoing municipality-led activities to raise awareness and educate the community about end-of-life care decisions. A logistic regression analysis was carried out to examine the regional characteristics associated with running municipality-led awareness-raising activities. Additionally, we investigated the creation and contents of awareness-raising materials targeting residents.
RESULTS: The questionnaire was completed by 1145 municipalities (valid response rate 65.8%). We found that 39.4% of the municipalities surveyed were currently running or planning activities about end-of-life care. Municipalities with active public awareness campaigns had a significantly higher financial capability index than inactive municipalities. Awareness-raising materials targeting residents were created in 134 of the municipalities. The most frequently mentioned components of the materials were the importance of articulating one's intentions with regard to end-of-life care services in advance, sharing those feelings with the family and revisiting them repeatedly (73.9%), and the explanation of home healthcare and long-term care services (47.7%).
CONCLUSIONS: The present findings suggest that cities with tight budgets are unable to carry out activities to raise awareness and educate residents about end-of-life care. Thus, it is important to pursue the implementation of further national-level initiatives and funding support for municipalities.
Under-five (U-5) mortality is a major public health problem in lower-middle income countries. The aim of this study is to examine the associations between maternal education and mortality of children below 5 years age in Indian context. We have used bi-variate and multivariate logistic regressions to assess the associations. Our study reveals that increasing level of education among women and in association with socio-economic and demographic factors significantly reduces the incidence of U-5 mortality. The findings suggest that increasing opportunities for female education and addressing socio-economic and demographic vulnerabilities could be effective strategies to combat the incidence of U-5 mortality.
Dans le cadre de la prise en charge des personnes en fin de vie, la mise en application des dispositions relatives aux directives anticipées reste une difficulté sur le terrain. Une équipe soignante de Saône-et-Loire a mené un travail de recherche sur cette question et ainsi éclairé plusieurs freins, dont une : méconnaissance de la loi et un, manque d’information du public. Des pistes de réflexion prolongent ces travaux.
As the national demand for donated organs continues to rise, the rate of registered donors within the United States has remained stagnant, creating a shortage of viable, transferrable organs. Lack of registered donors can be partially attributed to misconceptions about organ donation, which has led to a population less willing to register as organ donors. The utilization of educational interventions can begin to address common misconceptions and change attitudes to favor organ donation. A quantitative pretest, posttest survey design was utilized in order to assess effectiveness of an educational intervention within the college-aged population. Results suggest that educational interventions are effective in creating positive attitudes about organ donation in college-aged students.
The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.
INTRODUCTION: Two-thirds of chronically ill patients do not have an advance directive. The primary aim of this study was to develop an intervention to increase the documentation of advance directives in elderly adults in an internal medicine resident primary care clinic. The secondary aims were to improve resident confidence in discussing advance care planning and increase the number of discussions.
METHODS: The study was a pre- and postintervention study. The study intervention was a 30-minute educational session on advance care planning. Study participants were patients aged 65 years and older who were seen in an internal medicine residency primary care clinic over a 6-month period and internal medicine residents. Clinic encounters were reviewed for the presence of advance care planning discussions before and after the intervention. Resident confidence was measured on a Likert scale.
RESULTS: Two hundred ninety-five eligible patients were seen in the clinic from January 1, 2017, to June 30, 2017, and included in the analysis performed between 2017 and 2018. The mean number of documented advance care planning discussions increased from 2.24 (95% confidence interval [CI]: 1.0-4.9) during the preintervention period to 8.94 (95% CI: 5.94-13.24]) during the postintervention period (P = .0011). Following the intervention, residents overall reported increased confidence in discussing advance care planning.
CONCLUSION: A relatively modest intervention to increase advance care planning discussions is feasible in an internal medicine primary care clinic and can improve the confidence of residents with end-of-life discussion.
STUDY DESIGN: Retrospective Analysis of a Quality Improvement Program.
PURPOSE: To describe the development, implementation, and outcomes of an inpatient rehabilitation-based Short Stay Family Training (SSFT) program for patients with life-limiting conditions.
BACKGROUND: Patients with terminal illnesses often have functional limitations that prohibit discharge home after hospitalization, but their condition limits their ability to participate in rehabilitation in an inpatient setting.
METHODS AND MEASURES: After a needs assessment, an interdisciplinary team developed an SSFT program to empower patients, caregivers, and family members by giving them the tools to be independent in caring for a patient with a life-limiting condition. Patients qualifying for the program were tracked in terms of acute care physical therapy and occupational therapy discharge recommendations, diagnosis, inpatient rehabilitation unit length of stay (LoS), caregiver involvement, and discharge location. Data were retrospectively analyzed from patients over the first 16 months.
RESULTS: Since program implementation, 30 patients and their family members participated in the program. Overall, these patients experienced decreased LoS, increased discharge to home, and increased palliative care involvement in the plan of care.
CONCLUSION: Short Stay Family Training is a viable alternative to traditional inpatient rehabilitation to allow patients with life-limiting conditions to discharge home safely with caregiver support.
Guided by vested interest theory, the impact of educating potential organ donors about the beneficial experiences afforded to families of deceased donors was assessed. Participants were informed about these benefits by taking a survey that asked them to indicate both their awareness, and the appeal, of numerous existing benefits (e.g. grief services). We employed a double-sided mixed design. Both the true experimental design and the quasi-experimental repeated assessment indicated increased registration intentions. Only the quasi-experimental design indicated significant attitude change. This study provides evidence supporting the potential utility of focusing interventions on the benefits afforded to donor families.
OBJECTIVES: Report the implementation, user evaluation and key outcome measures of an educational intervention-the iValidate educational programme-designed to improve engagement in shared decision-making by health professionals caring for patients with life-limiting illness (LLI).
DESIGN: Prospective, descriptive, cohort study.
PARTICIPANTS: Health professionals working in acute care settings caring for patients with an LLI.
MAIN OUTCOMES MEASURED: Participant evaluation of learning outcomes for communication skills and shared decision-making; demographic data of participants attending education workshops; and documentation of patients with LLI goals of management, including patient values and care decision based on area in acute care and seniority of doctor.
RESULTS: The programme was well accepted by participants. Participant evaluations demonstrated self-reported improved confidence in the areas of patient identification, information gathering to ascertain patient values and shared decision-making. There was strong agreement with the course-enhanced knowledge of core communication skills and advanced skills such as discussing mismatched agendas.
CONCLUSIONS: We described the educational pedagogy, implementation and key outcome measures of the iValidate education programme, an intervention designed to improve person-centred care for patients with an LLI. A targeted education programme could produce cultural and institutional change for vulnerable populations within a healthcare institution. A concurrent research programme suggests effectiveness within the current service and the potential for transferability.
BACKGROUND: Virtual reality (VR) immersive environments have been shown to be effective in medical teaching. Our university hospital received funding from our deanery, Health Education in Wales, to film teaching videos with a 360-degree camera.
AIMS: To evaluate whether VR is an effective and acceptable teaching environment. VR headsets were set up for medical students who rotated through Velindre Cancer Hospital's Palliative Care department.
METHODS: Students were asked to put on a VR headset and experience a pre-recorded 27 min presentation on nausea and vomiting in palliative care settings. They subsequently viewed a radiotherapy treatment experience from a patient's point of view.
RESULTS: Of the 72 medical students who participated, 70 found the experience comfortable, with two students stating they felt the experience uncomfortable (1=too tight; 1=blurry visuals). Numerical scoring on ability to concentrate in VR from 0 to 10 (0=worst, 10=best) scored an average of 8.44 (range, 7-10). Asked whether this format suited their learning style, average score was 8.31 (range 6-10). 97.2 % (n=70) students stated that they would recommend this form of learning to a colleague, with one student saying he/she would not recommend and another stating he/she was unsure. Students left anonymous free-text feedback comments which helped frame future needs in this emerging area.
DISCUSSION: This study suggests that there is room for exploring new ways of delivering teaching and expanding it more widely in palliative care and oncology, but also provides feedback on areas that need further careful attention. Comments from students included: "Might have been the novelty factor but I learnt more from this 20 min VR thing than I have from many lectures".
SUMMARY: The project has proved sufficiently popular in medical student feedback, that the VR experience is now available on YouTube and has been permanently introduced into routine teaching. Further 360-degree teaching environments have been filmed. Of note is that our 360-degree videos have been viewed in Africa, so this format of teaching could prove valuable due to its global reach.
BACKGROUND: Many people do not discuss end of life preferences with those closest to them, although this can be beneficial to the individual and wider population. This study evaluated a community intervention to promote end of life preparation and discussion among people who are currently well.
METHODS: A series of presentations and workshops (the intervention) were delivered to community groups and people working within health and social care. Participants were invited to complete a three-stage follow-up survey at Baseline, Post intervention and at three months' follow-up.
RESULTS: Baseline questionnaires were completed by 498 individuals. Overall, 51% reported talking with close family or friends about their end of life care and 58% reported talking about what they would like to happen after their death. There was a significant positive relationship between increasing age group and having talked about end of life wishes. The majority of participants were already comfortable in talking about end of life (overall mean score 8.28/10). Post intervention, 73% stated that they planned to take action including 61% who planned a specific conversation and 55% who planned another action. At follow-up 64% reported that they had taken some action due to the intervention, including 43% who had talked about their own end of life preferences and 39% who had taken some other action.
CONCLUSIONS: Well-designed community-based interventions can be successful in prompting people to consider and discuss their end of life preferences.
Health care professionals use teach-back to foster adherence to treatment recommendations and to improve safety and quality of care. This improvement project, conducted in one division of a home care agency, used a pretest-posttest design with an interprofessional group of hospice home care clinicians to incorporate teach-back into home visits to evaluate if the use of teach-back enhanced caregiver and patient-provider communication, improved caregivers' confidence in caring for hospice home care patients, and decreased hospitalizations. After the intervention, the teach-back group had zero hospitalizations compared with 2 for the non–teach-back group (0% and 1.97%, respectively), and patient-caregiver “confidence” increased from 58% to 81%, pre to post intervention. In conclusion, teach-back is a cost-effective teaching methodology that can be implemented by any discipline to improve patient-provider communication and patient outcomes.
This community-based cluster randomized trial evaluated the efficacy of a 4-week multimedia educational intervention followed by telephone consultations at Weeks 12 and 24 on the selection of a hospice program for end-of-life care and completion of an advance directive (AD) in case of future advanced dementia. One hundred twenty-three cognitively intact older adults from five community centers in Taiwan were randomly assigned to two groups. The study showed that 100% of participants in the intervention group (two community centers, n = 52) selected hospice program care for end-of-life care and signed ADs, whereas those in the control group were less likely to do both ( p < .001). Participants in the intervention group also had a positive change in knowledge, subjective norms, perceived behavioral control, and behavioral intention of advance care planning (ACP) for advanced dementia. The theoretically based multimedia educational program was effective in assisting ACP implementation and completing ADs among community-dwelling older adults.
Objectif: L’article documente le vécu et les représentations sous-jacentes aux soins cliniques pour comprendre le suivi des protocoles ainsi que l’adaptation des soignés et leurs familles.
Matériel et méthodes: Quatre études de cas et 12 entretiens avec les soignants dont huit entretiens avec le personnel au niveau clinique et quatre entretiens avec des acteurs de soins en dehors de la biomédecine ont été menés. Pour l’intelligibilité de notre propos, l’approche constructiviste s’est avérée la mieux appropriée.
Résultats: Au début de toute maladie les familles s’en font une représentation au travers des modèles explicatifs de leurs sociocultures et leurs propres expériences qui oscillent sur des pôles naturaliste et spiritualiste. Par conséquent, le recours à plusieurs avis médicaux est l’attitude qui s’en dégage. Au Cameroun, l’éducation thérapeutique des patients qui permet de socialiser les soignés et leurs familles aux situations cliniques est davantage un échange informatif dépendant des dimensions affectives, cognitives ou conatives de la relation soignant/soigné. Elle ne devient efficiente qu’au moment où l’éducation culturelle du thérapeute lui permet de desceller les non-dits et les médiateurs de cette relation, afin d’établir des échanges négociés, partagés et mutuellement compris.
Conclusion: La maîtrise et le suivi assidu des protocoles thérapeutiques dans les soins palliatifs pédiatriques en Afrique subsaharienne interpellent le rôle du médecin qui sans être un spécialiste des cultures, se doit de ne pas faire fi des médecines parallèles qui sont à la portée de leurs patients et leurs familles et de collaborer avec eux dans les prises de décisions liées à leurs orientations thérapeutiques.
Terminal secretions is a common symptom seen in hospice patients. Antimuscarinic drugs are commonly used to treat this symptom despite a lack of supporting data. Wide variability in cost exists among these treatments. Hospice program data were assessed to identify high-use and high-cost medications. An educational intervention (EI) was developed to target one such medication, transdermal scopolamine. The EI focused on efficacy, safety, and actual cost (by unit and total expenditure) for each possible treatment of terminal secretions. Following the EI, drug utilization data was re-evaluated. Prior to the deployment of the EI, total monthly hospice drug costs averaged $91,405 (SD 1,444) with an average drug cost per patient per day of $11.42 (SD 0.54). Monthly costs of drugs frequently employed to treat terminal secretions averaged $7,187.67 (SD 2,253) pre-intervention. Following the EI, monthly drug costs decreased 22.5%, average daily patient drug costs decreased 11.1%, and total anti-secretion costs decreased 28.5% after adjusting for difference in census. Education regarding the use and cost of medications to treat symptoms at end-of-life in hospice patients can be an intervention used to lead to significant cost savings to hospice organizations while maintaining appropriate symptom management for patients. Future interventions to target additional high-cost medications are warranted.
AIMS AND OBJECTIVES: The aim of this mixed methods study was to develop science-based content for a systematic death education training system based on the needs of adult cancer patients. The study contained two parts: survey development and Delphi survey. First, a small sample test was conducted to check the reliability and validity of the questionnaire. Next, this questionnaire was applied to investigate adult cancer patients' needs for death education. Then, we invited experts in the fields of nursing management, clinical medicine, clinical nursing and psychological care to carry out two rounds of Delphi consultations to revise the training content.
BACKGROUND: Death education is often combined with hospice care, which is based on a clear 6-month survival period. However, the survival of adult cancer patients has improved with improved cancer diagnoses and treatments, and death education should be initiated before the dying stage. At the same time, patients' needs for medical information become increasingly important in daily clinical practice. Therefore, a death education programme based on adult cancer patients' needs was developed to help these patients reflect on the meanings of life and death.
DESIGN: A mixed methods study.
METHODS: During the survey development period (from April 2017-September 2017), a small sample test (n = 150) was conducted to verify the reliability and validity of the questionnaire on death education needs of adult cancer patients. This questionnaire was developed based on a literature review and discussion among the study group. Next, 324 adults with cancer, recruited from a three-level cancer hospital in Tianjin, China, were surveyed to analyse their needs for death education, using the questionnaire that had been tested in the pretest period. Finally, a Delphi survey was conducted from October 2017-January 2018. A panel of experts (n = 23) recruited from major hospitals, nursing schools and universities in China in the fields of clinical nursing, nursing management, clinical medicine and psychological care took part in the study to revise the training contents based on the investigation results.
RESULTS: The reliability and validity of results based on the small sample test revealed that the Cronbach's alpha coefficient and the half-degree of reliability of the questionnaire were 0.924 and 0.951, respectively. This demonstrated that the questionnaire had high reliability. The KMO was 0.756 and the Bartlett Test of Sphericity showed p < 0.001, indicating that the factor analysis was justified in the sample. Eight components with eigenvalues greater than one were retained by the factor analysis. The investigation of the patients' needs for death education showed that the overall score of patients' needs was 3.60 ± 0.709 points (needs were measured on a scale from 1-5, where 5 indicates high needs), and there were high demands for education regarding "cancer patient life reviews," "death-related ethical issues" and "to leave peacefully." Data from expert panel members were collected in two rounds over a 4-month period, and consensus was achieved in the second Delphi round. The final death education contents of adult cancer patients contained four sections: cancer, death, psychology and practice. These were divided into 54 teaching topics to be included in 14 courses.
CONCLUSIONS: The adult cancer patient death education training content devised in this study is science-based, practical and can be used as a guide for clinical nurses to provide high-quality care to adult cancer patients.
RELEVANCE TO CLINICAL PRACTICE: Nurses could become more involved in providing death education to adult cancer patients and their families. Further research is needed to explore the applicability of the training content and to develop the content according to changing times and patients' needs.
This study endeavors to investigate how healthcare workers, equipped with expressive arts methods, could foster life-death education for the elderly. Forty-nine older adults aged 60 or above joined a 10-session expressive arts-based life-death education program that was led by social workers equipped with expressive arts methods. An ethnographic research approach, with a post-treatment focus group (n = 17), was conducted with the participants. The results showed that expressive arts methods could enhance reorganization of life experiences, promote dealing with ambivalent emotion regarding life-death issues, improve communicating life-death issues with family members, and induce ideas to prepare for death.