Ce livre décrit les fondements de l’éthique du soin et des situations qui nourriront la réflexion des professionnels de la santé qui, au quotidien, cherchent à relier le sens et le concret de l’action, à garder le cap de la perspective soignante.
Alors que le suicide est dépénalisé depuis plus de deux siècles dans nos pays, inciter une personne à se supprimer ou y contribuer activement est d'ordinaire puni par la loi et réprouvé par l'éthique. Démêler ce paradoxe et rendre plus intelligible un acte qui ne le sera peut-être jamais est le but de cet ouvrage. Qu'en ont dit les grands penseurs, des stoïciens jusqu'à saint Augustin, Thomas d'Aquin, Hume, Kant ou Emile Durkheim ? Et aujourd'hui, que peuvent nous apprendre le psychiatre et le travailleur social, le théologien et le médecin en soins palliatifs, ou encore l'économiste, qui lève ici le voile sur un tabou occidental ? Car le suicide d'une personne questionne les valeurs sur lesquelles reposent nos démocraties, comme la dignité humaine, la liberté ou la solidarité.
Un livre indispensable à toute discussion raisonnable sur l'euthanasie, l'aide au suicide et la prévention d'actes suicidaires.
Background: With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care (HPC) to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed.
Methods: The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year following the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software.
Results: From across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%) and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health - during and after the MAiD procedure.
Conclusion: The new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating/training providers as without proper support, health-care workers will be unable to perform to their full potential/scope of practice while also providing patients with holistic and accessible care.
The surprise question (SQ), “Would you be surprised if your patient died within a year?”, has been studied in the cancer population as a prognostic prompt. Studies have almost exclusively directed the SQ to physicians, whereas perspectives of nurses remain underevaluated. We asked the SQ for patients admitted to an inpatient medical oncology service to medical oncology, palliative care, and hospital medicine teams and bedside nurses. We performed a 1-year retrospective chart review to identify how concordant various provider types were in their prognostic estimations and identified the missed opportunity rate (MOR) defined as the number of patients who died within a particular time frame but who the providers had predicted would be alive and may not have had a palliative approach. Oncologists had higher MORs for the 6-month and 1-year SQ when compared with hospital medicine providers. Bedside nurses were least concordant in their estimations of prognosis and had higher MORs for all time frames of the SQ. Missed opportunities might have significant implications for the end-of-life care for cancer patients, and continued research is needed to understand what influences provider prognostication and how this impacts palliative care utilization for patients with life-limiting disease.
This paper investigates nursing home staff’s experiences of the “final journey,” when a resident’s dead body is taken to the cold room. The account is based on data from ethnographic fieldwork in two nursing homes in Norway. Accompanying the dead body, staff found themselves “betwixt and between” – an anxious and ambiguous state, bordering on the uncanny. Liminality became a useful theoretical device in the data interpretation. The last offices – a rite of passage governing liminal states – provided a containing structure for this final journey but were not sufficient to banish the uncanny from the staff’s experience.
PURPOSE: The purpose of this study was to evaluate whether an educational palliative care intervention improved the quality of life for next of kin to older persons in nursing homes.
METHODS: Altogether, 90 next of kin in the intervention group and 105 next of kin in the control group were included. Data were collected using the WHOQOL-BREF questionnaire, answered before and 3 months after the intervention was completed. Descriptive and comparative analyses were performed.
RESULTS: This study found a statistically significant increase in the Physical health subscale in the intervention group but not in the control group. In contrast, the General health score decreased in the control group but not in the implementation group. Furthermore, we found an increase in the item able to perform activities of daily living in the intervention group and a decrease in the item energy and fatigue in the control group.
CONCLUSION: The results indicated small statistical changes regarding next of kins' QoL in favour of the intervention. Lessons learned from the study for future research are to include next of kin as participants at meetings about next of kin and to include more meetings about the theme next of kin. Both approaches would bring a stronger focus on the family-centred care aspect of the intervention into the education component, which this study indicates the need for.
TRIAL REGISTRY: Trial registration NCT02708498. Date of registration 26 February 2016.
PURPOSE: The purpose of this paper is to explore and examine attitudes and perceptions of leaders on application of quality improvement (QI) strategies in a palliative and hospice care organization.
DESIGN/METHODOLOGY/APPROACH: This study employed qualitative research methodology where leaders working in a hospice and palliative care organization were invited to participate in 45-60-min-long semi-structured interview. Interviews were recorded and transcribed verbatim. Qualitative content analysis was utilized to analyze the data collected during participant interviews.
FINDINGS: Seven leaders participated in the interviews. Five themes were developed from data analysis: patient-centered care; continuous QI; leadership involvement and commitment; communication as a foundation for QI; and perceived barriers. Data analysis suggests that use of QI approach in palliative and hospice care enhances the quality of care provided for patients, and can help improve patient satisfaction.
PRACTICAL IMPLICATIONS: Because there is a paucity of research on implementation of QI strategies in hospice and palliative care settings, this research can have wide practical implications. This research can provide useful practical tips to leaders as they work on implementing QI projects in their organization.
ORIGINALITY/VALUE: This manuscript can be of value to leaders, administrators and academicians who are interested in applying QI principles to healthcare processes especially in palliative and hospice care settings. Ability to work with others, solid communication and involvement of employees from all levels can help in streamlining current systems of care.
PURPOSE: Palliative radiation therapy (PRT) has an essential role in cancer symptom control but is under-utilized in Ontario. This initiative aimed to implement an educational outreach intervention to improve knowledge of and access to PRT among inter-professional palliative healthcare teams across an Ontario Local Health Integration Network (LHIN).
METHODS AND MATERIALS: A needs assessment was completed from June to September 2018, with inter-professional palliative healthcare teams. Participants completed a survey to identify perceived opportunities, barriers, and enablers to recommending or referring patients for PRT. Thematic analysis informed content of the educational outreach intervention and included: how to access PRT, common indications, case studies, and side-effect management after completing PRT. The educational outreach intervention was completed from October 2018 to January 2019. Participants completed a survey and results were analyzed using descriptive statistics. The number of patients that received PRT was determined by cross-referencing the regional database with the Radiation Oncology Information System.
RESULTS: Although 22.9% of participants had previously recommended or referred patients, 96.2% of participants agreed or strongly agreed that they are likely to recommend or refer patients for PRT following the educational outreach intervention (n = 131). An increase was observed in the number of patients receiving PRT from the community during the intervention period.
CONCLUSION: The educational outreach intervention improved knowledge and the likelihood of inter-professional palliative healthcare teams accessing PRT for patients in the community. More patients now receive PRT, conveying improved symptom control and quality of life.
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.
Dans nos sociétés occidentales le renforcement de la valeur d’autonomie a pris corps à travers différentes dispositions législatives, dont la possibilité de rédiger des directives anticipées. Leur mise en œuvre questionne les professionnels de santé.
Objectif: L'objectif principal de ce travail était de recueillir la perception pluridisciplinaire de soignants, puis, secondairement, de décrire leur pratique d’information et d’aide à la rédaction des directives anticipées.
Méthode: Cette enquête est à visée prospective. Un questionnaire a été remis un jour donné à la promotion 2016/2017 d’un diplôme inter-universitaire en soins palliatifs (DIUSP). Le questionnaire se composait de dix questions fermées, 12 questions ouvertes et un encadré libre.
Résultats: Le sentiment des professionnels de santé était hétérogène, 56,3 % se disaient à l’aise, 44 % d’avis partagé. Plusieurs moments sont cités pour présenter les directives anticipées. Sur la forme, 25 % des répondants pensaient qu’allier un modèle type avec des zones de texte libre permet d’engager un dialogue patient soignant. Les psychologues considéraient que les directives anticipées ne doivent servir qu’à transmettre des informations médicales. Si la plupart des répondants ont délivré des informations sur les directives anticipées, 81,3 % n’ont jamais accompagné de patient pour leur rédaction et 57,1 % n’ont pas eu à les utiliser. Leur valeur opposable est adéquate pour 56,3 % des répondants.
Conclusion: La perception des directives anticipées est favorable, mais leur appropriation par des professionnels de santé sensibilisés à la démarche palliative reste délicate. Des difficultés ressortent telles qu’aborder le sujet de la fin de vie, trouver le temps nécessaire pour échanger avec les personnes qui souhaitent en rédiger.
BACKGROUND: Advance care planning is a crucial end-of-life care practice. However, an advance care planning educational programme for practitioners in an acute care setting has not yet been established. Consequently, we examined the effects of an advance care planning educational programme in an acute hospital in the hope of achieving increased awareness of end-of-life care.
DESIGN: A mixed-methods, pre- and post-design was employed to evaluate the change in attitudes of practitioners post-programme. The intervention programme was conducted thrice over 3 months in 90-min sessions.
SETTING/PARTICIPANTS: This study included 85 participants in the baseline assessment working at B acute hospital in Osaka.
RESULTS: Participants' scores on the 'Positive attitude for end-of-life care' subscale on the short version of the Frommelt Attitude Toward Care of Dying scale significantly increased after the 6-month intervention. A 'Positive attitude for end-of-life-care' implies that participants would not be afraid to practice end-of-life care. Further, participants' scores on the 'Death relief' subscale of the Death Attitude Inventory also significantly increased. The term 'Death relief' means that death helps in ending suffering. It means participants are not afraid of death. Qualitative results implied that participants believed advance care planning implementation and communicating with patients and patients' families were critical.
CONCLUSIONS: Six months post-intervention, participants displayed sustained positive attitudes towards end-of-life care. These results suggest that the present programme was effective at improving practitioners' attitudes towards patients' end-of-life care.
BACKGROUND: Critical care and palliative care professionals treat and support seriously ill patients on a daily basis, and the possibility of burnout may be high. The consequences of burnout can include moral injury and distress, and compassion fatigue, which are detrimental to both care and staff.
AIMS AND OBJECTIVES: To explore the incidence of moral distress in areas at high risk of burnout in a large cancer centre and to explore possible measures for addressing moral distress.
DESIGN: A cross-sectional survey.
METHODS: The Maslach Burnout Inventory was administered to critical care, critical care outreach, and palliative care teams in a specialist tertiary cancer centre. Open questions on supportive measures were also included. Burnout data were categorised into three domains of emotional exhaustion, depersonalization and personal accomplishment, and free-text analysis was conducted on the open-question data.
RESULTS: A total of 63 professionals responded across the teams (45% response rate). A low level of burnout was observed in the emotional exhaustion domain; depersonalization was higher in the critical care professionals; and overall, personal accomplishment was higher than normative scores. Free-text analysis highlighted three categories of responses: Debriefing, Managing emotional well-being, and Valuing individuals. There was a need to proactively recognize issues; undertake more debriefs; and open forums regarding cases, particularly with difficult deaths. Engaging all professionals, support to deal with families, and mandatory moral distress and resilience training were suggested, alongside a focus on team building through external activities such as group relaxation sessions and walks.
CONCLUSIONS: This study demonstrated a relatively low incidence of emotional exhaustion and depersonalization, and a slightly higher sense of personal accomplishment than normative scores despite staff working in an environment where high levels of burnout were expected.
RELEVANCE TO CLINICAL PRACTICE: Staff highlighted possible solutions to reduce burnout, which included debriefing, managing emotional well-being, and valuing individuals.
BACKGROUND: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care.
METHODS: Five mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding.
RESULTS: Most participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children's everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive "word of mouth".
CONCLUSIONS: The use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term.
INTRODUCTION: End-of-life (EoL) care professionals are prone to burnout given the intense emotional nature of their work. Previous research supports the efficacy of art therapy in reducing work-related stress and enhancing emotional health among professional EoL caregivers. Integrating mindfulness meditation with art therapy and reflective awareness complementing emotional expression has immense potential for self-care and collegial support. Mindful-compassion art therapy (MCAT) is a novel, empirically informed, and highly structured intervention that aims to reduce work-related stress, cultivate resilience, and promote wellness. This study aims to assess the potential effectiveness of MCAT for supporting EoL care professionals in Singapore.
METHODS: This is an open-label waitlist randomized controlled trial. Sixty EoL care professionals, including doctors, nurses, social workers, and personal care workers, are randomly allocated to one of two groups: (i) an intervention group that receives MCAT immediately and (ii) a waitlist-control group that receives MCAT after the intervention group completes treatment. Face-to-face self-administered outcome assessments are collected at three different time points-baseline (T1) for both groups, post-intervention (T2), and 6-week follow-up (T3) for intervention group-as well as pre-intervention (T2) and post-intervention (T3) for the waitlist-control group. The primary outcome measure is burnout, and secondary measures include emotional regulation, resilience, compassion, quality of life, and death attitudes. Between- and within-participant comparisons of outcomes are conducted, and the appropriate effect size estimates are reported. An acceptability and feasibility study is to be conducted by using a triangulation of qualitative data with framework analysis.
DISCUSSION: The outcomes of this study will contribute to advancements in both theories and practices for supporting professional EoL caregivers around the world. It will also inform policy makers about the feasibility, acceptability, and effectiveness of delivering a multimodal psycho-socio-spiritual intervention within a community institutional setting. The study has received ethical approval from the institutional review board of Nanyang Technological University.
BACKGROUND: Parkinson's disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals' experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands.
METHODS: This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: “In the past 2 years, did you treat or support a person with PD who subsequently died?” The data were analyzed by thematic text analysis.
RESULTS: Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons' needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity.
CONCLUSIONS: Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons' preferences. Additional training can help to become more knowledgeable and confident.
OBJECTIVES: To develop an enhanced understanding of factors that influence providers' views about end-of-life care, we examined the contributions of provider, hospital, and country to variability in agreement with consensus statements about end-of-life care.
DESIGN AND SETTING: Data were drawn from a survey of providers' views on principles of end-of-life care obtained during the consensus process for the Worldwide End-of-Life Practice for Patients in ICUs study.
SUBJECTS: Participants in Worldwide End-of-Life Practice for Patients in ICUs included physicians, nurses, and other providers. Our sample included 1,068 providers from 178 hospitals and 31 countries.
MEASUREMENTS AND MAIN RESULTS: We examined views on cardiopulmonary resuscitation and withholding/withdrawing life-sustaining treatments, using a three-level linear mixed model of responses from providers within hospitals within countries. Of 1,068 providers from 178 hospitals and 31 countries, 1% strongly disagreed, 7% disagreed, 11% were neutral, 44% agreed, and 36% strongly agreed with declining to offer cardiopulmonary resuscitation when not indicated. Of the total variability in those responses, 98%, 0%, and 2% were explained by differences among providers, hospitals, and countries, respectively. After accounting for provider characteristics and hospital size, the variance partition was similar. Results were similar for withholding/withdrawing life-sustaining treatments.
CONCLUSIONS: Variability in agreement with consensus statements about end-of-life care is related primarily to differences among providers. Acknowledging the primary source of variability may facilitate efforts to achieve consensus and improve decision-making for critically ill patients and their family members at the end of life.
Coordinating the care of terminally ill children is difficult for both parents and the health care team. An underutilized resource is spiritual care, such as that provided by Pacific Health Ministry, a community-based nonprofit established to develop hospital ministry training programs in Hawai'i and provide chaplaincy services to local facilities. This paper describes a training exercise, called the Pediatric Interprofessional Program (PIPP), which is modeled after an adult program, the Hawai'i Interprofessional Training for End of Life Communication in the intensive care unit (HITEC-ICU). Both programs were developed to introduce teams of learners consisting of Pacific Health Ministry spiritual care residents, internal medicine or pediatric residents, undergraduate students in nursing, and graduate students in social work to techniques in delivering serious, life-altering information, and the dynamics of working as an interprofessional team through use of progressively unfolding clinical simulations. PIPP facilitators included chaplaincy instructors at Pacific Health Ministry, university faculty, and community practitioners in pediatrics, nursing, and social work. The simulations were conducted at the Translational Health Science Simulation Center (THSSC) of the University of Hawai'i at Manoa (UHM) School of Nursing and Dental Hygiene (SONDH), with simulated patients from the HealthCAST (Collaborative Acting Simulation Training) program, a collaborative agreement between SONDH and the UHM Department of Theatre and Dance. The training is ongoing, but has thus far demonstrated that interprofessional education programs are feasible across community, academic, and clinical lines, and benefit from the engagement of community resources.
Hospice health-care professionals (HCP) evaluate and manage cancer pain in patient homes. This study explores HCP’s perceptions of barriers that affect pain management for home hospice cancer patients. A convenience sample of 20 experienced hospice HCP were recruited from a regional hospice agency. Data were collected through two focus groups using semistructured interviews and analyzed using a constant comparative approach to generate themes. An unexpected finding revealed patient’s religious and cultural beliefs about suffering and family caregiver’s beliefs that patients deserve to suffer due to past actions are barriers to pain management in home hospice. Hospice HCP can identify patients at risk for suffering at the end of life. Interventions targeting spiritual suffering and needs are needed. Home hospice HCP have an ethical obligation to address undue suffering through family’s withholding of necessary pain medications and should consider alternative placement when home is not suitable for a peaceful death.
Background: With growing expense in chronic illness and end-of-life (EOL) care, population-based interventions are needed to reduce the health care cost and improve patients' quality of life. The authors believe that promotion of palliative medicine is one such intervention and this promotion depends on the acceptance of palliative medicine concepts by health care professionals.
Aims of the studies: Perception of palliative medicine in chronic illness and in EOL care by health care professionals was learned in two studies carried out at a teaching community hospital 14 years apart.
Participants and methods: Voluntary and anonymous surveys were randomly distributed among physicians, nurses, and social workers/case managers. Participants in the two studies presented two different groups of health care providers.
Results of the studies: Results of the two studies were essentially similar. On most of the issues, respondents' perceptions were consistent with palliative medicine concepts and confidence in palliation grew over the 14-year period. The authors call this approach a "palliative attitude." Physicians with greater experience performed better in care planning. Younger physicians were more perceptive to withdrawal of care in futile cases. Participants' religion had no influence on perception of palliative medicine. Attendance of educational activities did not influence attitudes of health care professionals. Health care providers who favored involvement of palliative care teams in patients' management were better in care planning, interpretation of the DNR consent, use of opioids at the EOL, use of intensive care, and evaluation of the disease trajectory.
Conclusion: The authors conclude that direct interaction between palliative and interdisciplinary teams in clinical practice is the key factor in the education of health care professionals, in the development of a "palliative attitude," and in the promotion of palliative medicine.
Que deviennent les concepts de rencontre, d'identification, d'empathie, dans le cadre des interventions des équipes mobiles de soins palliatifs auprès des soignants ? Il est intéressant d'appréhender cette dimension spécifique de la dynamique des groupes et de la transversalité, pratique du soin à part entière mais dont il est parfois difficile de rendre compte du fait qu'elle recouvre ce que l'on pourrait nommer le travail invisible, ou symbolique, psychologique des EMSP.