Ce livre regroupe l'ensemble des informations nécessaires à la pratique des soins palliatifs pédiatriques : cadre réglementaire, concepts théoriques et projet de soin. Ayant pour fil conducteur les questions auxquelles le praticien et les équipes sont confrontés au quotidien, l'ouvrage prend en compte les interactions pluridisciplinaires.
Background: An interdisciplinary palliative care team began exploring evaluation tools used to assess changes in the knowledge, skills, and attitudes of learners participating in clinical learning experiences on an interdisciplinary palliative care consult service. This article will review existing evaluation tools, examine the themes that emerge, discuss their strengths and limitations, and make recommendations for continued development in the field.
Methods and Findings: A literature search was performed using the MEDLINE database. Search terms included combinations of the following: interdisciplinary education, assessment/evaluation, and palliative care or palliative care assessment/test. Four hundred eighty-seven articles were captured during the initial search. Articles that focused on student readiness for interdisciplinary education and team self-assessments of current interdisciplinary collaboration practices were excluded. Nine articles were included in the review. Evaluation tools varied in terms of learner type, assessment type, and frequency. No tool was comprehensive in the assessment of knowledge, skills, and attitudes or truly interdisciplinary.
Conclusions: There is a lack of comprehensive and interdisciplinary evaluation tools in the published literature. Further research should be conducted to develop a tool that meets the needs of learners in clinical experiences within an interdisciplinary service.
OBJECTIVES: Patients who are no longer eligible for curative treatment often suffer from multiple complaints and require a multidisciplinary treatment approach. We incorporated two pharmacists in the palliative team, one hospital pharmacist and one pharmacist who were trained as a community pharmacist. The objective of our study was to evaluate their contribution to the palliative team.
METHODS: During 13 months, the two pharmacists participated in all regular patient reviews and rounds and were available for individual consultation by all members of the palliative team on a daily basis. Each intervention (consults at request or during the patient rounds) was logged and categorised.
KEY FINDINGS: During the study period, 115 patients were under the care of the palliative treatment team. The pharmacists were actively involved in 107 of these (93%). Pharmacists interventions occurred in 76% of patients, with an average of 1.5 interventions per patient. The most common intervention types were giving general therapeutic advice, starting of a drug for an uncontrolled symptom and stopping a drug that was given as prophylaxis. When comparing the contribution of the hospital pharmacist and the outpatient pharmacist, their interventions overlapped with regard to starting drugs, choice of drugs and side-effect management. However, interventions on parenteral drugs or optimising the route of administration mostly came from the hospital pharmacist, whereas the outpatient pharmacist more often intervened in increasing adherence and stopping drugs.
CONCLUSION: The palliative pharmacist team adds expertise to the palliative treatment team, with an active contribution in 76% of patients.
Introduction : Notre équipe régionale ressource de soins palliatifs pédiatriques (ERRSPP) a accompagné une enfant de 12 ans polyhandicapée atteinte d’une maladie génétique neurodégénérative pendant 5 ans. La qualité de l’alliance entre la famille et l’IEM et le soutien de l’ERRSPP a permis de créer un climat propice à une demande particulière de la famille : un accompagnement jusqu’au décès dans l’établissement. Aujourd’hui en France, la possibilité d’un accompagnement en phase terminale reste exceptionnelle dans les IEM, les patients étant transférés sur le Centre Hospitalier.
Histoire de S. : un accompagnement de 5 ans au sein de l’IEM : L’ERRSPP et l’IEM ont été en lien régulièrement pour établir un projet de vie autour de cet enfant. Un travail de réflexion autour de sa fin de vie a été mené : prescription anticipée pour douleur et/ou symptômes rebelles, voie d’abord, disponibilités des différents intervenants, la place de chacun au sein de l’établissement, l’accompagnement des parents. Cet enfant est décédé à l’âge de 17 ans au sein de son établissement selon le souhait des parents. L’IEM a eu la volonté de suivre le souhait familial malgré les contraintes et les faibles moyens de l’établissement. L’ERRSPP a permis de sécuriser la mise en place des différents traitements selon les symptômes et d’assurer le soutien des professionnels.
Conclusion/discussion : La réunion post-décès souligne un accompagnement de qualité, (confort de l’enfant, personnel se sentant soutenu) malgré des difficultés réelles (absence de présence médicale continue, nombre limité de soignants et nombre élevé de patients).
Background: Interdisciplinary team involvement is commonplace in many palliative care settings across the world. Teamwork is perceived by many experts as an indispensable functionality of palliative care teams. Significantly different structural and functional attributes of these teams between regional and organisational contexts could potentially act both as strengths and weaknesses towards their overall productivity. The sustainability and resilience of the team also has an indirect bearing on the team functioning.
Aim: This article describes international evidence on dynamic palliative care teams with a view of how and when they function efficiently or adversely. Emphasis is also placed on studies that suggest means to mitigate the conflicts and limitations of teamwork in palliative care and related healthcare settings.
Findings: Evidence strongly suggests that palliative care is best delivered through a multidisciplinary team approach.
Conclusion: The overall performance of a healthcare team is largely determined by the supportive work environment built through effective communication, leadership skills and mutual respect.
L'interprofessionnalitéest un des pilliers qui contribuent à l'aide et à l'amélioration des soins donc particulièrement à l'accompagnement des personnes âgées en situation palliative. L'investissement de chacun et l'association des diverses compétences, fait en sorte que les résidents ne sont pas seuls dans cette ultime étape de leur vie et les collaborateurs participent activement à leur accompagnement. Grâce aux échanges, aux réflexions entre collaborateurs, les compétences différentes sont en fait complémentaires et enrichi chacun dans son parcours professionnel : "cela fait de nous ce que nous sommes aujourd'hui" selon Anna, rédactrice de cet article.
Cette étude présente un patient atteint d’une sclérose latérale amyotrophique (SLA) bulbaire en phase palliative symptomatique. Le Projet de Vie du patient était de participer à un hommage sportif organisé en son honneur dans les 10 jours. Lors de l’hospitalisation, le patient a présenté une détresse respiratoire aiguë sur pneumonie impliquant une démarche décisionnelle collégiale. L’adaptation des interventions thérapeutiques a permis de réaliser le Projet de Vie malgré une fin de vie proche. Le décès est survenu deux jours après l’hommage. Ce cas clinique permet d’illustrer l’interdisciplinarité au sein des équipes, et de discuter l’intrication synergique entre technique et relation.
BACKGROUND: Clinicians need to deliver prognostic information to surrogates of nondecisional, critically ill patients so that surrogates can make informed medical decisions that reflect the patient's values. Our objective was to implement a new approach for communicating with surrogates of patients with chronic critical illness.
METHODS: Surrogate decision makers of patients who were difficult to liberate from mechanical ventilation were prospectively enrolled. Surrogates met with different members of the intensive care unit treatment team for sequential 15-minute appointments to receive patient-specific assessments and education on chronic critical illness. The feasibility and acceptability of this approach were determined. A 24-question comprehension instrument was developed to assess a participant's understanding that a family member was displaying features of chronic critical illness. Each question was scored from 1 to 5, with larger scores indicating greater comprehension.
RESULTS: Over a 15-week period, educational sessions for 9 mechanically ventilated patients were conducted. On average, 2 surrogates per patient (range: 1-4) and 6 members of the interdisciplinary team (range: 4-6) were at each meeting. Surrogates and clinicians had very positive impressions of the communication intervention. The average preintervention comprehension score was 85 of 120 (standard deviation [SD]: 8, range: 71-101). The postintervention comprehension score was greater by 5 points on average (SD: 9, range: -11 to +20 points, P = .04).
CONCLUSIONS: Surrogates of critically ill patients approved of this novel communication approach and had a greater understanding of the patient's medical condition after the intervention.
Palliative care services offered in the United States have grown substantially since the year 2000. These types of services have been shown to improve a patient's quality of life when presented with a serious or life-threatening disease or illness. An important characteristic of a quality palliative care service is the presence of an interdisciplinary team to utilize different areas of expertise to address multiple aspects of patient care. An important member of this team is the pharmacist. The services presented in this interprofessional education and practice guide describe pharmacist-delivered palliative care services offered in an institutional ambulatory palliative care setting from 2012 to 2018.
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.
The palliative care patient is definitely a unique type of patient. Due to the complexity of the symptoms requires a holistic therapeutic approach. Modern methods of treatment in palliative and hospice care underline an important role of physio, kinesiotherapy and pharmacological treatment coexistence. The rehabilitation reduces clinical symptoms, accompanying the basic disease and increases the quality of life of palliative patients and their families. It becomes an inseparable element of treatment, both in outpatient care as well as in stationary care and home care. Due to the high dynamics onset of cancer in the group of geriatric patients there is a need for a broader analysis of the topic. The goal of palliative care is to achieve the best possible quality of life for patients and their families.
Caring for patients who are at the end of their lives is an essential aspect of practice in intensive care units (ICUs). While intensive care is one of the fastest-growing healthcare specialties as a result of technological and scientific advances, a significant proportion of patients admitted to an ICU in the UK will not survive their ICU stay. Therefore, it is important to examine ways to enhance practice in this area and the factors that might affect the care provided to patients and their families.
AIM: To identify the challenges and facilitators that members of the ICU multidisciplinary team encounter in the delivery of end of life care to dying patients in ICUs.
METHOD: A scoping literature review was undertaken. Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus with full text, MEDLINE Complete and the EBSCOhost E-Journals Database were searched electronically to identify literature from April 2007 to April 2017, alongside hand-searching. Critical appraisal tools were used and thematic analysis was undertaken to analyse the data and identify themes.
FINDINGS: Ten articles were included in the literature review, which identified various challenges and facilitators in providing effective end of life care in ICUs. The main themes identified were: communication, family involvement, personal factors and the ICU environment.
CONCLUSION: All of the studies included in the literature review identified several important challenges related to communication, such as time constraints, disagreements among healthcare professionals, and a lack of knowledge among healthcare professionals about how to conduct challenging conversations with patients and families. Future developments in practice should consider the role of effective multidisciplinary team-working in end of life care.
Chaque année, en France, 1200 Adolescents et Jeunes adultes
(AJA) entre 15 et 25 ans sont diagnostiqués pour un cancer. Ses
formes les plus fréquentes sont les lymphomes, les sarcomes, les
tumeurs germinales, les leucémies aiguës et les tumeurs du
système nerveux central.
Dans cette classe d'âge, de nombreuses études ont mis en corrélation le risque plus élevé de mauvaise observance des traitements
associés à celui de rechute de la maladie.
En plus des problématiques adolescentes, ils sont à la fois confrontés
à une maladie grave avec risque vital, et à des traitements
prolongés sur plusieurs mois qui vont interférer avec leurs projets
d’études, de travail et leurs relations familiales et sociales. L’adolescent ou le jeune adulte à qui l’on annonce un diagnostic de cancer va connaître, en plus des transformations corporelles liées à la maladie et aux traitements, nombre de bouleversements sur les liens familiaux, amicaux et amoureux, sur la scolarité et la ormation professionnelle, la recherche d'un premier emploi…
La création d’unités ou d’équipes multidisciplinaires AJA avec un
personnel spécifiquement formé, permet de créer un cadre favorable
à une observance thérapeutique adaptée, et un accompagnement médical et humain au plus près des besoins des patients, tout en soutenant leurs projets de vie.
Nous proposons, par cet article, de présenter la prise en charge AJA en oncologie, et plus spécifiquement celle de l’Institut Curie.
Canuck Place Children’s Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians’ perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians’ perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy’s potential role in the support of children, families, and staff within a hospice setting.
Palliative care is an interdisciplinary field that focuses on optimizing quality of life forpatients with serious, life-limiting illnesses. Palliative care includes aggressive management of pain and symptoms; psychological, social, and spiritual support; as well as discussions of advance care planning, which may include treatment decision making and complex care coordination.
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BACKGROUND: The PaTz-method (acronym for Palliatieve Thuiszorg, palliative care at home) is perceived to improve coordination, continuity and communication in palliative care in the Netherlands. Although important for further implementation, research showing a clear effect of PaTz on patient-related outcomes is scarce. This study aimed to examine perceived barriers and added value of PaTz and its association with improved care outcomes.
METHODS: Ninety-eight Dutch general practitioners and 229 Dutch district nurses filled out an online questionnaire with structured questions on added value and barrier perception of PaTz-participation, and palliative care provided to their most recently deceased patient, distributed online by Dutch medical and nurses' associations. Data from PaTz-participants and non-participants was compared using Chi-square tests, independent t-tests and logistic regression analyses.
RESULTS: While both PaTz-participants and non-participants perceived PaTz to be beneficial for knowledge collaboration, coordination and continuity of care, time (or lack thereof) is considered the most important barrier for participation. PaTz-participation is associated with discussing five or more end-of-life topics with patients (OR = 3.16) and with another healthcare provider (OR = 2.55). PaTz-participation is also associated with discussing palliative sedation (OR = 3.85) and euthanasia (OR = 2.97) with another healthcare provider. Significant associations with other care outcomes were not found.
CONCLUSIONS: General practitioners and district nurses feel that participating in a PaTz-group has benefits, but perceive various barriers for participation. While participating in a PaTz-group is associated with improved communication between healthcare providers and with patients, the effect on patient outcomes remains unclear. To stimulate further implementation, future research should focus on the effect of PaTz on tangible care characteristics and how to facilitate participation and remove barriers.
Since 2002, the Department of Veterans Affairs (VA) has provided a unique training opportunity in palliative care at six VA medical centers. The VA Interprofessional Fellowship in Palliative Care has trained chaplains, nurses, pharmacists, physicians, psychologists, and social workers to provide clinical palliative care and to develop as leaders in the profession. This article describes the program's origin, mission, outcomes, and lessons learned.
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.
Although recognized as best practice, regular integration of shared decision-making (SDM) approaches between patients and oncologists remains an elusive goal. It is clear that usable, feasible, and practical tools are needed to drive increased SDM in oncology. To address this goal, we convened a multidisciplinary collaborative inclusive of experts across the health-care delivery ecosystem to identify key principles in designing and testing processes to promote SDM in routine oncology practice. In this commentary, we describe 3 best practices for addressing challenges associated with implementing SDM that emerged from a multidisciplinary collaborative: (1) engagement of diverse stakeholders who have interest in SDM, (2) development of the necessary roadmap and consideration of the infrastructure needed for engendring patient engagement in decision-making. We believe these 3 principles are critical to the success of creating SDM tools to be utilized both within and outside of clinical practice. We are optimistic that shared use across settings will support adoption of this tool and overcome barriers to implementing SDM within busy clinical workflows. Ultimately, we hope that this work will offer new perspectives on what is important to patients and provide an important impetus for leveraging patient preferences and values in decision-making.
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.