Aide-soignante dans un service de médecine polyvalente avec lits identifiés soins palliatifs, j'ai, au cours de mon exercice professionnel, été confrontée à une situation qui m'a particulièrement marquée, touchée.
En effet j'ai accompagné une personne que je connaissais déjà dans un cadre privé. Une relation particulière avec cette patiente s'est instaurée dès son arrivée à l'hôpital et a influencé ma posture professionnelle.
Cette situation, point de départ de ce mémoire réflexif, m'a conduit à poser la problématique suivante : "en quoi une relation privilégiée avec une patiente dans un contexte de soins palliatifs influence la posture professionnelle".
Je me suis intéressée aux concepts d'accompagnement, du prendre soin, de la relation soignant-soigné et de la posture professionnnelle.
Au travers de ce mémoire, j'ai pu constater que la relation soignant soigné est riche d'enseignements et que la quête de la juste proximité à l'autre n'est jamais terminée, elle se situe au centre d'ajustements permanents, parce-que chaque personne est unique.
Les situations de soins palliatifs ou de fin de vie peuvent être difficiles à gérer pour les étudiants en soins infirmiers.
L'évolution de la formation infirmière a permis la mise en place d'enseignements de soins palliatifs et des moyens d'accompagner les étudiants dans leur apprentissage de ces situations.
Le suivi pédagogique des étudiants et l'analyse de pratiques professionnelles pourraient être des moyens de gérer les situations de soins palliatifs et de fin de vie, en développant la pratique réflexive et les compétences des futurs professionnels.
Des étudiants ont participé à cette recherche, les résultats ont permis d'ouvrir la réflexion et d'élargir l'hypothèse.
La professionnalisation en serait-elle la clé ?
Ce travail, rend compte d'un an de recherches dans le cadre de la formation inter-universitaire de soins palliatifs et d'accompagnement. Il a pour objectif de limiter les freins à la mise en place d'une prise en soins palliatifs précoce dans le secteur gériatrique, notamment en EHPAD. Les représentations des soignants sur le domaine palliatif, la mort et la gériatrie en général sont les barrières que nous avons tenté de décrypter à l'aide de la littérature, de la législation mais surtout grâce à la diffusion d'un questionnaire mixte de 24 items destiné aux soignants paramédicaux. Ce dernier a pu mettre en lien les données théoriques et les pratiques soignantes. Les résultats ont démontré une certaine méconnaissance du champ d'action des soins palliatifs, des fragilités des résidents âgés non reconnues par les soignants, une précocité peu dévelopée face aux enjeux bien réels et grandissants que représentent les soins palliatifs. Néanmoins des préconisations créatives et enthousiastes sont possibles, rapides et peu coûteuses à mettre en place, pour le bien-être des soignants dans leurs exercices professionnels, mais surtout, pour le bénéfice des personnes âgées accueillies et leurs proches.
Cet ouvrage veut aider l’infirmière à mieux faire face aux enjeux éthiques auxquels elle est confrontée dans sa pratique. Prenant en compte les aspects sociaux et systémiques du domaine de la santé, et s’appuyant autant sur des principes éthiques reconnus que sur des études récentes, cette 2e édition permet d’analyser et de comprendre les problèmes éthiques pour, ultimement, poser des actions réfléchies.
[Extrait résumé éditeur]
Primary palliative care improves access to symptom control and quality-of-life care for children and families and can reduce moral distress in clinicians. This article describes the application of a nursing theory framework for an evidence-based practice/quality improvement project that embedded pediatric primary palliative care into a hospital-based setting using unit-specific projects. An evidence-based practice/quality improvement project, guided by the Comfort Theory™, provided primary palliative care education and mentorship to improve knowledge, skills, and attitudes of direct care clinicians. Training consisted of didactic and self-directed learning, mentoring, and completion of unit-based projects to establish meaning and impact best practices and policies. A total of 149 direct care clinicians, comprising 3 cohorts, enrolled in the program. Improvements in interdisciplinary collaboration in care were demonstrated through 21 unit-based projects, the development of triggers for specialty palliative care consults in several high-risk populations, and the development of institutional guidelines for end-of-life care. The Comfort Theory™ guided integration of palliative care for children with serious illness and their families. This project empowered direct care clinicians in caring for patients, providing support to clinical staff, and in developing best practices.
BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide end-of-life care (EoLC) as the population ages. To enhance primary palliative care (PC), the care they provide needs to be understood to inform best practice models of care.
OBJECTIVE: To provide a comprehensive description of the self-reported role and performance of GPs and GPNs in (1) specific medical/nursing roles, (2) communication, (3) care co-ordination, (4) access and out-of-hours care, and (5) multidisciplinary care.
METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 29 reviewed papers reported the GPs' and GPNs' role in EoLC or PC practice. GPs report a central role in symptom management, treatment withdrawal, non-malignant disease management and terminal sedation. Information provision included breaking bad news, prognosis and place of death. Psychosocial concerns were often addressed. Quality of communication depended on GP-patient relationships and GP skills. Challenges were unrealistic patient and family expectations, family conflict and lack of advance care planning. GPs often delayed end-of-life discussions until 3 months before death. Home visits were common, but less so for urban, female and part-time GPs. GPs co-ordinated care with secondary care, but in some cases parallel care occurred. Trust in, and availability of, the GP was critical for shared care. There was minimal reference to GPNs' roles.
CONCLUSIONS: GPs play a critical role in palliative care. More work is required on the role of GPNs, case finding and models to promote shared care, home visits and out-of-hours services.
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.
- Modern surgeons play a complex role as both providers and gatekeepers when it comes to meeting the palliative needs of their patients.
- Surgical palliative care is delivered by surgical teams as a component of routine surgical care, and includes management of physical and psychosocial symptoms, as well as basic communication about prognosis and treatment options and identification of patient goals and values; in addition, specialty palliative care for surgical patients may be provided through a range of consultative or integrative models.
- A common fallacy in surgical culture is for surgical intervention and palliation to be re-garded as mutually exclusive or sequential strategies in the trajectory of a patient’s care.
- Because it is difficult to measure palliative care provided by surgeons as a component of routine surgical practice, the evidence base for concurrent palliative care in surgery is sparse.
- Reconceptualizing opportunities to offer palliative care to surgical patients in terms of the phases of the perioperative continuum may help integrate palliative care throughout the clinical trajectory.
Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients' drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses' profession in the palliative field and help them implement palliative care philosophy in practice.
Background: The work continuity of physicians in hospice and palliative medicine (HPM) has a great impact on the quality of care and practice experiences. However, nationwide studies providing a general overview of the work continuity of HPM physicians are scarce.
Methods: Data relating to inpatient HPM care provided from July 2000 to December 2013 were obtained from the National Health Insurance Research Database of Taiwan. Specifically, the numbers of hospitals, patients, patient hospitalization days, and physicians involving HPM in each year were calculated. The years of HPM work experience and total HPM workdays of each physician were also computed.
Results: Of the 40,965,153 inpatient records during the study, 121,258 (0.3%) records were related to inpatient HPM care, with 60 participating hospitals and 604 attending physicians. The annual number of HPM physicians increased with time from 77 in 2000 to 217 in 2013. The largest percentage (38.4%) of physicians practiced HPM for only one year, while only 23 (3.8%) physicians practiced HPM in each year without interruption. Of the 217 HPM physicians in 2013, 45 (20.7%) were newcomers, 78 (36.0%) had 1-4 years of prior HPM work experience, 54 (24.9%) had 5-9 years, and 40 (18.4%) had at least 10 years. Conclusions: Among HPM physicians in Taiwan, only a small percentage exhibited long-term dedication to the field, whereas most HPM physicians had short practice periods. More strategies are needed to improve work continuity among HPM physicians.
BACKGROUND: The intensive care unit (ICU) is a care context that is sometimes described as being unconducive to the values and ideals of a good death in end-of-life care. Such assumptions render the ICU emblematic of a troubling discourse about end-of-life care in this clinical context.
AIM: To stimulate a reflective examination of intensive care nursing practice with respect to end-of-life care.
METHODS: The work of contemporary nursing scholar Laurie Gottlieb is used to perform a strengths-based relational ethical examination of previously published literature that describes critical care nurses' experiences of providing end-of-life care in the ICU.
FINDINGS: This literature suggests that the relational ethical value of authentic engagement, which is fundamental to the disciplinary ethos of expert palliative care nursing, is reflected in the everyday practice of intensive care nurses whose patients die while under their care.
CONCLUSION: A strengths-based approach can make visible the relational ethical practice of critical care nurses who care for dying patients and their families in the ICU.
Palliative care is one of the newer health specialties and continues to mature. While there has been remarkable progression of clinical skills and education, there has been a lack of focus on palliative care interdisciplinary leadership or development of leadership skills. This article highlights the importance of interdisciplinary palliative leadership within the 5 realms of clinical practice, research, education, policy/advocacy, and administration. A definition of leadership is offered and discussion of successful leadership skills is described. A curent review of leadership opportunities is provided.
Bien que ce ne soit pas le but visé par la Loi concernant les soins de fin de vie, le don dans un contexte d'aide médicale à mourir (AMM) a été rendu possible au Québec après l'adoption de cette loi en juin 2014. Cela a soulevé plusieurs questions, des dilemmes moraux aux problèmes de logistique. Transplant Québec, l'organisme provincial de dons d'organes, a été proactif dans la création de politiques et de procédures qui permettent le don dans un contexte d'AMM de façon à respecter la dignité du patient à l'approche de la mort et à lui offrir la possibilité de donner des organes qui pourraient sauver la vie de ceux qui en ont besoin. Cet article a pour but de répondre aux diverses préoccupations soulevées par ce procédé, tels les conflits d'intérêts potentiels, la capacité de la personne à donner son consentement, l'impact des changements nécessaires au processus de l'AMM, et l'assurance que la mort du donneur potentiel est confirmée selon les normes légales et médicales. L'expérience actuelle du don au Québec dans un contexte d'AMM est aussi abordée. Il est nécessaires de mieux comprendre l'impact que le don dans un contexte d'AMM peut avoir sur les patients à l'approche de la mort et sur le processus de deuil des proches.
Background: In jurisdictions where medical aid in dying (MAiD) is legal, there is an obligation to ensure the competence of those who assess eligibility and provide MAiD to patients. Entrustable professional activities (EPAs) are one framework for incorporating competency-based training and assessment into the workplace, so we convened a group of experienced MAiD providers to develop an EPA descriptor for MAiD.
Methods: We performed a mixed-methods sequential qualitative (focus group via 2 teleconferences) and quantitative (survey) study to generate and refine a consensus descriptor using open coding followed by a modified Delphi approach. Participants were experienced MAiD assessors and providers identified purposively from a national community of practice in Canada.
Results: Of the 22 MAiD assessors and providers invited to participate in the focus group, 13 (59%) agreed. The focus group divided MAiD into 3 components: assessment, preparation and provision of MAiD. Participants identified key knowledge, skills and attitudes for each component. They also suggested teaching approaches, potential sources of information to evaluate progress and a potential basis for evaluating progress and entrustment. Key points from this descriptor were sent via survey to 88 assessors and providers, of whom 64 (73%) responded. Respondents agreed on all key points except for the conditions of entrustment; these were modified based on feedback and sent back to the respondents for a second Delphi round, where agreement was achieved.
Interpretation: We achieved a high degree of agreement on a competency-based descriptor of MAiD in the form of an EPA. This can be used to inform practice standards, curriculum development and/or assessment of competence among learners and practising providers alike.
BACKGROUND: End-of-life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. This study aimed to clarify the current practices and barriers facing pediatric intensive care unit (PICU) EOL care and to identify the requisites for excellent PICU EOL care in Japan.
METHODS: A survey was conducted in 29 facilities across Japan in 2016. The questionnaire consisted of 19 multiple-choice questions and 1 open-ended question.
RESULTS: Twenty-seven facilities responded to the survey. Only 19% had educational programs on EOL care for fellows or residents. Although 21 hospitals (78%) had a multidisciplinary palliative care team, only 8 of these teams were involved in EOL care in PICUs. Mental health care for healthcare providers provided by a psychiatrist was rare (4%). The free comments were categorized as individual, team, environment, legal/ethics, or culture. Commonly raised individual issues included "lack of experience and knowledge about EOL care," "fear of making the decision to end care," and "reluctance to be involved in EOL care because of its complex process." Team issues included "insufficient frequency of conferences" and "non-multidisciplinary approach." Legal and ethics issues were "lack of legal support" and "fear of lawsuits."
CONCLUSIONS: This study is the first to investigate current conditions and barriers in PICU EOL care in Japan. Most of the facilities involved were not satisfied with current practices. The results indicate the need for relevant educational programs as well as the importance of multidisciplinary and legal support.
Background: With over half of expected deaths occurring in acute hospitals, and a workforce not trained to care for them, good quality end-of-life care in these settings is hard to achieve. The National Consensus Statement on Essential Elements for Safe and High-Quality End-of-Life Care has been translated into e-learning modules by the End of Life Essentials project, and this study aims to demonstrate how clinicians interpret the Consensus Statement in their day-to-day practice by answering the question at the end of each module: 'Tomorrow, the one thing I can change to more appropriately provide end-of-life care is…'.
Methods: The modules were developed by a palliative care educator with the support of a peer review group and were piloted with 35 health professionals. Pre-post module evaluation data were collected and during a 10-month period from 2016 to 2017 a total of 5181 individuals registered for the project accessing one or more of the six modules. The data from 3201 free-text responses to the post hoc practice change question have been analysed, and themes generated.
Findings: Five themes are derived from the data: communication, emotional insight, professional mindset, person-centred care and professional practice.
Conclusion: Learners who have completed End of Life Essentials have shared the ways they state they can change their practice tomorrow which may well be appreciated as a clinical response to the work by the Australian Commission on Safety and Quality in Health Care in leading and coordinating national improvements in quality and safety in healthcare in Australia. While intent cannot guarantee practice change, theory on intention-behaviour relations indicate that intentions have a strong association with behaviour. This indicates that the modules have the ability to influence end-of-life care in acute hospitals.
CONTEXT: The Cancer Control Act was passed in Japan in 2007, and various additional programs on palliative care have been implemented to improve quality of life and relieve pain and suffering in patients with cancer. However, how clinical settings have changed remains unclear.
OBJECTIVES: The primary aim of the present study was to determine changes in nurses' palliative care knowledge, difficulties, and self-reported practices between 2008 and 2015.
METHODS: This study was an analysis of two nationwide observational studies from 2008 to 2015. We conducted two questionnaire surveys for representative samples of nurses in designated cancer hospitals, community hospitals, and district nurse services. The measurements used the Palliative Care Knowledge Test (PCKT, range 1-100), the Palliative Care Difficulties Scale (PCDS, range 1-5), and the Palliative Care Self-Reported Practice Scale (PCPS, range 1-5). Comparisons were made using the nonpaired Student t-test and a multivariate linear regression model using two cohorts.
RESULTS: We analyzed survey results for 2707 nurses in 2008 and 3649 nurses in 2015. Significant improvements were seen in PCKT, PCDS, and PCPS total scores for nurses in every work location over the seven-year study period, with PCKT total scores of 53 vs. 65 (P < 0.001; effect size = 0.60), 47 vs. 55 (P < 0.001; effect size = 0.40), and 52 vs. 55 (P = 0.118; effect size = 0.13), PCDS total scores of 3.0 vs. 2.5 (P < 0.001; effect size = 0.76), 3.4 vs. 2.8 (P < 0.001, effect size = 0.91), and 3.2 vs. 2.9 (P < 0.001; effect size = 0.53), and PCPS total scores of 3.7 vs. 4.0 (P < 0.001; effect size = 0.13), 3.5 vs. 3.8 (P < 0.001; effect size = 0.42), and 3.8 vs. 4.0 (P < 0.011; effect size = 0.21) in designated cancer hospitals, community hospitals, and district nurse services, respectively.
CONCLUSION: Nurses' palliative care knowledge, difficulties, and self-reported practices improved over the seven-year study period, especially in terms of expert support in designated cancer hospitals and knowledge among nurses in designated cancer hospitals.
The purpose of this article is to explain the strategies used in the "Set-up" phase of developing computer-based education on the care and management of incarcerated people who are older and/or dying. Public health nurses have an opportunity to support efforts in educating corrections staff to enhance health care for older and dying inmates. Such endeavors can promote social justice through inmates receiving evidence-based care that parallels that received by the community at large. "Set-up" is the first of four phases in the Institute for Healthcare Improvement's Framework for Going to Full Scale. Our design approach was threefold and included an environmental scan, a modified Delphi survey, and a usability study. An expert advisory board was consulted throughout the Set-up Phase. Participants for the Delphi Survey had expertise in geriatrics and corrections health care. Usability testing was conducted at two State Correctional Institutions. The Delphi Survey consisted of three Qualtrics surveys. Usability testing examined navigability; detected problems; observed time spent solving problems; identified problem severity; and developed recovery strategies. The Set-up established proof of concept, three prototype modules, and a specifications document to guide future programming. In addition, a Technology Niche Analyses® provided a preliminary commercialization plan (NIH, 2017). The Set-up phase has been instrumental in exposing the available infrastructure for dissemination of an educational product within corrections and may be a first step in addressing public health concerns on issues in aging. Commercial feasibility of the program and the need for continued research for Developing the Scalable Unit were established.
PURPOSE: To describe the practices and opinions of specialized palliative care (SPC) physicians regarding early palliative care for patients with cancer, determine characteristics associated with receiving early referrals; and solicit opinions regarding renaming the specialty "supportive care."
METHODS: The survey was distributed by mail and e-mail to physicians who had previously self-identified as providing palliative care. SPC physicians were defined as receiving palliative care referrals from other physicians and not providing palliative care only for their own patients.
RESULTS: The response rate was 71% (531/746), of whom 257 (48.4%) practiced SPC. Of these SPC physicians, 84% provided mainly cancer care; >90% supported early palliative care referral in oncology and had referral criteria facilitating this, but only 20% received early referrals (>6-month prognosis). There was ambivalence regarding caring for patients with full resuscitation status and responsibility for managing cancer treatment-related complications. SPC physicians receiving early referrals were more likely to be female (p=0.02) and have a postgraduate degree (p=0.02), and less likely to provide mainly cancer care (p=0.03) and to agree that patients should stop chemotherapy before referral (p=0.009). Although 60% agreed that patients perceive the term "palliative care" negatively and 39% believed a name change to supportive care would encourage early referral, only 21% supported renaming the specialty.
CONCLUSIONS: Although most SPC physicians supported early palliative care in oncology, the timing of referrals was often late, and was associated with characteristics of SPC physicians. Few SPC physicians supported renaming palliative care.