L’HAD permet de prodiguer au domicile des soins lourds et techniques et/ou requérant une importante coordination pluridisciplinaire, non réalisables par les seuls professionnels de ville, dans des conditions de sécurité et de qualité comparables à celles d’un hébergement en établissement de santé, dès lors que sont remplies des conditions de faisabilité. Elle est nécessairement prescrite par un médecin, en accord avec le patient et son entourage. Considérablement développée depuis 20 ans, elle intervient sur tous les départements de métropole et d’outre-mer (en 2019 : 295 établissements).
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Les équipes ressources régionales en soins palliatifs pédiatriques interviennent à la demande des équipes soignantes qui gravitent autour de l’enfant et de sa famille. Au sein de ces équipes pluriprofessionnelles, la puéricultrice participe à l’élaboration et à la coordination du projet de vie de l’enfant en soins palliatifs en permettant le lien domicile-ville-hôpital. Grâce à son expertise, elle veille à garder l’enfant au centre des préoccupations soignantes en tenant compte de la place des parents.
BACKGROUND: Patients in the last phase of their lives often use many medications. Physicians tend to lack awareness that reviewing the usefulness of medication at the end of patients' lives is important. The aim of this study is to gain insight into the perspectives of patients, informal caregivers, nurses and physicians on the role of nurses in medication management at the end of life.
METHODS: Semi-structured interviews were conducted with patients in the last phase of their lives, in hospitals, hospices and at home; and with their informal caregivers, nurses and physicians. Data were qualitatively analyzed using the constant comparative method.
RESULTS: Seventy-six interviews were conducted, with 17 patients, 12 informal caregivers, 15 nurses, 20 (trainee) medical specialists and 12 family physicians. Participants agreed that the role of the nurse in medication management includes: 1) informing, 2) supporting, 3) representing and 4) involving the patient, their informal caregivers and physicians in medication management. Nurses have a particular role in continuity of care and proximity to the patient. They are expected to contribute to a multidimensional assessment and approach, which is important for promoting patients' interest in medication management at the end of life.
CONCLUSIONS: We found that nurses can and should play an important role in medication management at the end of life by informing, supporting, representing and involving all relevant parties. Physicians should appreciate nurses' input to optimize medication management in patients at the end of life. Health care professionals should recognize the role the nurses can have in promoting patients' interest in medication management at the end of life. Nurses should be reinforced by education and training to take up this role.
In 2019, the Royal College of Nursing (RCN) and Queen's Nursing Institute (QNI) recognised a significant reduction in the number of qualified district nurses (those who hold the Community Specialist Practitioner (CSP) qualification). Community nursing is an evolving role, and, with the role of community nurse expanding, the role of the CSP in supporting teams to adapt to the development of the role is more important than ever. As a leader, the CSP possesses skills in leadership and co-ordination of the team, alongside specialist knowledge of the provision of nursing care in community settings. This article seeks to explore the hidden practice of verification of expected adult deaths by registered nurses and how the CSP role is integral in developing and embedding this skill within a team.
BACKGROUND: Family conferences (FCs) in the intensive care unit play an important role in reducing the psychological burden of patients' families at the end of life. However, no studies have clarified the specific roles and contributions of nurses related to FCs for terminally ill patients in critical care and their families.
AIMS AND OBJECTIVES: To clarify nurses' contribution to FCs for terminally ill patients in critical care and their families and examine the priority of each item.
DESIGN: A modified Delphi method was used.
METHODS: This study consisted of two phases. In phase 1, an initial list was developed based on a literature review, individual interviews, and a focus group interview. Phase 2 involved two rounds of the Delphi survey. Practitioners (N = 55) from hospitals across Japan were recruited to the Expert Panel for phase 2. They were asked to rate each nurse's contribution in terms of its importance using a 9-point Likert scale (1 being "not important at all" to 9 being "very important"). Fifty participants responded to round 1 of the survey, and 46 participants completed round 2. If at least 80% of the panellists chose an importance level of 7 or higher, the item was considered "important".
RESULTS: The 65 items of the potential list were classified into three domains: preparation (16 items), discussion and facilitating meaning during a FC (32 items), and follow up after a FC (17 items). The expert panel determined that, of 65 items, 49 items on the proposed list of nurses' contribution were considered important.
CONCLUSIONS: This study clarified nurses' contribution to FCs, with consensus on their importance by expert nurses.
RELEVANCE TO CLINICAL PRACTICE: This study could be useful for improving and ensuring the quality of nurses' contribution to FCs and promoting collaboration between nurses and other medical professionals.
Background: Recent and preprohibition studies show that patients with serious illness might benefit from psychedelic-assisted therapies for a range of symptoms, physical, psychosocial, and existential.
Objective: To explore the potential roles and research priorities of these therapies in patients with serious illness.
Design, Setting, and Participants: Qualitative study based on semistructured interviews with 17 experts in serious illness care and/or psychedelic research from the United States and Canada.
Measurements: The interview guide elicited participants' perspectives on (1) the potential roles of psychedelic-assisted therapies in this setting, (2) research priorities relevant to this population, and (3) the potential for integrating psychedelic-assisted therapies into existing delivery models of serious illness care. We used thematic analysis until thematic saturation.
Results: Domain I: Participants had polar views on the therapeutic potential of psychedelic-assisted therapies, ranging from strong beliefs in their medical utility to reluctance about their use in this patient population. They shared concerns related to the risks of adverse effects, such as delirium or worsening of psychological distress. Domain II: Research priorities primarily concerned patients with clinically diagnosed psychosocial distress, such as depression, anxiety, or demoralization. Participants also articulated potential roles extending beyond traditional medical diagnosis. Domain III: Participants emphasized essential safety and efficacy guidelines relevant to the integration of these therapies into existing models of care.
Conclusion: This qualitative study highlights issues and priorities for research on psychedelic-assisted therapies in patients with serious illness and proposes a conceptual framework for integrating these therapies into existing delivery models of serious illness care.
Caring for dying patients is often a new experience for ICU residents. End-of-life and palliative training in medical schools is lacking. Many residents experience troublesome emotions during residency. Literature establishes that residents show lower well-being scores than similar populations. To make emotional wellness a priority for residents, monthly mandatory Palliative Care Rounds (PCR) were established in the ICU. The role of the Palliative Care Social Worker (PCSW) is central in planning and implementing PCR. Social workers have unique skills well-suited to this type of activity in an acute care setting. Residents present cases and the PCSW facilitates discussion to explore complex emotions helping residents process their feelings. Forty-five residents responded to a seven-item questionnaire, out of 70 potential resident respondents (64% response rate). Only 60% said they learned about end-of-life and its emotional aspects in medical school. Ninety-eight percent reported the PCR helped them be more aware of their feelings, and would recommend it to colleagues. Ninety-five percent said PCR are important for interns and residents to help them grow professionally and become better clinicians. Through the process of dissecting their emotions, PCR allows for personal and professional growth that improves residents’ ability to become empathic providers.
Background: Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery.
Methods: Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis.
Results: Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients’ families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers’ most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation.
Conclusions: The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30–50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.
Dans cet album, la Mort est un personnage bienveillant et attentionné. Son travail est d'aller chercher tous ceux qui vont mourir - vieux ou jeunes, insectes ou éléphants. Son rôle est indispensable, parce que sans elle il n'y aurait pas assez de place pour que de nouvelles vies puissent voir le jour. La Mort accomplit sa tâche avec le plus de soin et de douceur possible. Elle fait partie de la vie, de l'amour, et de nous tous.
BACKGROUND: Despite a broad consensus and recommendations, numerous international reports or studies have shown the difficulties of implementing palliative care within healthcare services. The objective of this study was to understand the palliative approach of registered nurses in hospital medical and surgical care units and their use of mobile palliative care teams.
METHODS: Qualitative study using individual in depth semi-structured interviews and focus group of registered nurses. Data were analyzed using a semiopragmatic phenomenological analysis. Expert nurses of mobile palliative care team carried out this study. 20 registered nurses from three different hospitals in France agreed to participate.
RESULTS: Nurses recognize their role as being witnesses to the patient's experience through their constant presence. This is in line with their professional values and gives them an "alert role" that can anticipate a patient-centered palliative approach. The physician's positioning on palliative care plays a key role in its implementation. The lack of recognition of the individual role of the nurse leads to a questioning of her/his professional values, causing inappropriate behavior and distress. According to nurses, "rethinking care within a team environment" allows for the anticipation of a patient-centered palliative approach. Mobile Palliative Care Team highlights the major role of physicians-nurses "balance" while providing personal and professional support.
CONCLUSIONS: The Physician's positioning and attitude toward palliative approach sets the tone for its early implementation and determines the behavior of different staff members within healthcare service. "Recognition at work", specifically "recognition of the individual role of nurse" is an essential concept for understanding what causes the delay in the implementation of a palliative approach. Interprofessional training (physicians and nurses) could optimize sharing expertise. Registered nurses consider MPCT as a "facilitating intermediary" within the healthcare service improving communication. Restoring a balance in sharing care and decision between physicians and other caregivers lead care teams to an anticipated and patient-centered palliative approach according to guidelines.
There is a growing recognition of significant, unmet palliative care needs in nursing facilities, yet limitations in the workforce limit access to palliative care services. Attention to palliation is particularly important when there are efforts to reduce hospitalizations to help ensure there are no unintended harms associated with treating residents in place. A specialized palliative care registered nurse (PCRN) role was developed as part of the OPTIMISTIC (Optimizing Patient Transfers, Impacting Medical quality, and Improving Symptoms: Transforming Institutional Care) program, a federally funded project to reduce potentially avoidable hospitalizations. Working in collaboration with existing clinical staff and medical providers, the PCRN focuses on managing symptoms, advance care planning, achieving goal concordant care, and promoting quality of life. The PCRN serves as a resource for families through education and support. The PCRN also provides education and mentorship to staff to increase their comfort, knowledge, and skills with end-of-life care. The goals of this article are to provide an overview of the PCRN role and its implementation in nursing facilities and describe core functions that are transferrable to other contexts.
L’intervention des équipes mobiles de soins palliatifs, le plus souvent sollicitée par le médecin traitant, est essentielle pour accompagner et soutenir les professionnels et les patients. Anticipation, coopération et coordination sont les clés du succès.
BACKGROUND: Volunteers make a major contribution to palliative care but little is known specifically about hospital palliative care volunteers.
AIM: The aim of this study was to understand the role and experience of hospital palliative care volunteers.
DESIGN: Systematic review and narrative synthesis.
DATA SOURCES: CINAHL, Embase, Medline, PsycINFO, PubMed and three dissertation databases were searched from inception to June 2019. A forward and backward search of included papers in key journals was also undertaken. Records were independently assessed against inclusion criteria by authors. Included papers were assessed for quality, but none were excluded.
RESULTS: In total, 14 papers were included. Hospital palliative care volunteers were mostly female, aged above 40 years, and training varied considerably. Volunteers faced unique challenges in supporting dying patients due to the nature of hospital care, rapid patient turnover and the once-off nature of support. Volunteer roles were diverse, with some providing hands-on care, but most focused on 'being with' the dying patient. Volunteers were appreciated for providing psychosocial support, seen as complementary to, rather than replacing the work of health professionals. Given volunteers were often required to work across multiple wards, establishing positive work relationships with health professionals was challenging. Divergent views about whether the volunteer was part of or external to the team impacted volunteers' experience and perceptions of the value of their contribution.
CONCLUSION: Hospital palliative care volunteers face unique challenges in supporting terminally ill patients. Volunteer support in hospital settings is possible and appropriate, if sufficient support is available to mitigate the challenges associated with complex, high-acuity care.
This review aimed to summarize existing nursing literature to provide an overview of the extent, range, and nature of nurses' involvement in artificial nutrition and hydration (ANH) at the end of life and to map the key concepts underpinning nurses' involvement in ANH. A scoping review was designed following the methodological framework guidelines of Arksey and O'Malley and the recommendations for advancing the methodology by Levac et al. An inductive qualitative content analysis was conducted according to the guidelines by Elo and Kyngäs. Thirty-nine articles were identified. Content analysis revealed 1 main category: "nurses' role in the decision-making process," with the 2 subcategories of "mediator" and "activator." The category and subcategories are influenced by the following generic categories: "being," "feeling," and "knowing," each of them constituted by 2 subcategories in their turn. Nurses perform the roles of activator and mediator. Their ability to establish good relationships and their attitudes enable the creation of teamwork and closeness to patients and family: relationships and attitudes are the subcategories of the "being" category. The category "feeling" represents the ways nurses experience the decision-making process, which can raise ethical and moral dilemmas and cause emotional responses. For these reasons, nurses have to create the right balance between personal-self and professional-self. The category "knowing" includes nurses' clinical and ethical knowledge about ANH. It emerges that deep clinical and ethical knowledge of ANH is necessary to provide consistent, adequate care at end of life.
OBJECTIVES: The purpose of this study was to explore the perceptions and experiences of physical therapists (PTs) regarding their role in palliative care (PC) when practising in nations with advanced integration of PC into mainstream healthcare.
METHODS: This qualitative study included an electronic demographic survey and semistructured interview. Data analysis included descriptive statistics for demographics and the constant comparative method for interview results.
RESULTS: Thirteen PTs from eight nations identified four categories of roles and responsibilities: (1) working with patients and families, (2) being an interdisciplinary team (IDT) member, (3) professional responsibilities beyond direct patient care and (4) factors influencing the role of PTs in PC. Concepts identified were shifting priorities (increased family involvement, emphasis on psychosocial aspects and differences in care philosophy), care across the continuum (accommodating changes in patient status, increasing awareness of PTs' role in varying disease states and working with the IDT) and changing perceptions about PT in PC (perceptions of PTs/others regarding PTs' role in PC and professional responsibilities of the PT in PC).
CONCLUSIONS: Based on participant responses, a previously published conceptual framework by Wilson et al in 2017 was updated and included an increased emphasis on patient wishes and dignity, treating breathlessness, patient advocacy within their family and use of technology and networking. Within PC, PTs play a key role on the IDT and can improve quality of life; however, multiple barriers exist to providing PT care within PC. Further advocacy is needed from PTs and professional organisations to integrate these services.
Interventional procedures benefit palliative care team patients in a variety of different ways, providing a means to manage a wide array of debilitating symptoms. The interprofessional collaboration of palliative care and interventional radiology is imperative for the successful management of chronically ill patients in their homes. This article briefly defines the roles of the palliative care team and that of interventional radiology in patient symptom management, providing a better understanding of the differences and the interface of these disciplines in the complex symptom management of palliative patients.
Patient-defined factors that are important at the end of life include being physically independent for as long as possible, good symptom control, and spending quality time with friends and family. Hospice care adds to the quality of care and these patient-centered priorities for people with cancer and their families in the last weeks and days of life. Evidence from large observational studies demonstrate that hospice care can improve outcomes directly and support better and more appropriate health care use for people in the last stages of cancer. Team-based community hospice care has measurable benefits for patients, their family caregivers, and health services. In addition to improved symptom control for patients and a greater likelihood of time spent at home, caregiver outcomes are better when hospice care is accessed: informational needs are better met, and caregivers have an improved ability to move on with life after the patient's death compared with people who did not have access to these services. Hospice care continues to evolve as its reach expands and the needs of patients continue to broaden. This is reflected in the transition from hospice being based on excellence in nursing to teams with a broad range of health professionals to meet the complex and changing needs of patients and their families. Additional integration of cancer services with hospice care will help to provide more seamless care for patients and supporting family caregivers during their caregiving and after the death of the patient.
OBJECTIVES: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end-of-life.
METHODS: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings.
RESULTS: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and NICE statements presented regarding end-of-life care planning and discussions.
CONCLUSIONS: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services increases our understanding of how services help people with dementia and family carers prepare for end-of-life. We found fragmentation across the service system, lack of continuity and tensions regarding when these conversations should be initiated and by whom.
The changing age profile of the human population globally means that the requirement for residential long-term care (LTC) for older adults is escalating, with an associated increase in deaths in these facilities. Health care assistants (HCAs), whose main role is provision of direct care to residents, comprise the largest staff cohort in residential care for older adults. The purpose of this scoping review was to explore three key areas related to HCAs: their role and responsibilities, end-of-life (EOL) education, and their views and experiences of caring for residents at EOL. The literature search included five databases and 32 studies were ultimately reviewed. Key issues were as follows: HCAs feel marginalized and undervalued, they need and desire EOL education, and resident deaths impact negatively on them. The changing care needs for older adults with complex comorbidities at EOL in LTC will place an increased onus on HCAs' skills, knowledge, and personal and professional development.
La présence de bénévoles accompagnants auprès des malades en fin de vie vient répondre à un besoin fondamental manifesté par beaucoup de malades, mais aussi des proches confrontés à une transformation rapide de leur contexte relationnel à la suite d'une maladie terminale véue par un être cher. Une transformation identique profonde survient en fin de vie et celle-ci s'appuie souvent sur le témoignage concret proposé par la présence de bénévoles bien formés : l'humanité appelle l'humanité. Les bénévoles constituent aussi un apport précieux pour les équipes soignantes oeuvrant tant en institution qu'à domicile. Cette composante bénévole, qui fait partie des soins palliatifs, n'est pas toujours comprise dans ses dimensions profondes et, pourtant, elle aide puissamment la résilience des malades et des proches, tout comme leur processus de deuil. Il convient donc d'implanter dans tous les lieux concernés les conditions requises pour permettre une saine implication de bénévoles bien formés dans les équipes de soins pallliatifs. Il y a là un défi de culture et de société particulièrement pertinent actuellement.