The spiritual dimension is considered to be a central component of palliative care. However, healthcare professionals have difficulties incorporating the spiritual dimension into their everyday practice. We propose a new approach by looking beyond the mere functionality of care practices. Rituals and ritualized practices can serve to express and communicate meanings and values. This article explores how ritualized practices have the ability to open up space for the spiritual dimension of care in the context of palliative care.
BACKGROUND: The intensity of end-of-life care varies substantially both within and between areas. Differing practice patterns of individual physicians are likely influenced by their peers.
OBJECTIVE: To assess whether intensity of end-of-life care previously provided by a physician's peers influences patterns of care at the end-of-life for that physician's patients.
RESEARCH DESIGN: Observational study.
SUBJECTS: A total of 185,947 fee-for-service Medicare enrollees with cancer who died during 2006-2010 who were treated by 26,383 physicians.
MEASURES: Spending in the last month of life, >1 emergency room visit, >1 hospitalization, intensive care unit admission in the last month of life, chemotherapy within 2 weeks of death, no/late hospice, terminal hospitalization.
RESULTS: Mean (SD) spending in the last month of life was $16,237 ($17,124). For each additional $1000 of spending for a peer physician's patients in the prior year, spending for the ego physician's patients was $83 higher (P<0.001). Among physicians with peers both in and out of their practice, more of the peer effect was explained by physicians outside of the practice ($72 increase for each $1000 increase by peer physicians' patients, P<0.001) than peer physicians in the practice ($27 for each $1000 increase by within-practice peer physicians' patients, P=0.01). Results were similar across the other measures of end-of-life care intensity.
CONCLUSIONS: Physician's peers exert influence on the intensity of care delivered to that physician's patients at the end-of-life. Physician education efforts led by influential providers and provider organizations may have potential to improve the delivery of high-value end-of-life care.
AIM: Identify the palliative care learning needs of healthcare students and determine the acceptability of an innovative learning strategy for palliative care named competencia para cuidar en el hogar-paliar (CUIDAR-PALIAR) aimed to increase students' competencies.
METHODS: A single-group mixed methods design was used. A questionnaire was designed and semi-structured interviews were used to determine the palliative care competencies of undergraduate students; 90 students participated in the strategy.
FINDINGS: The learning needs of students are: approaches to death and loss, how to intervene with the patient's family, understanding of the palliative care context, management of the patient's pain and symptoms and the development of therapeutic communication skills.
CONCLUSION: The strategy is highly accepted by students, and statistically significant increases in palliative care were observed before and after the intervention. These preliminary results justify future interventions due to the potential effect of the strategy CUIDAR-PALIAR in the development of competencies for palliative care in undergraduate students.
BACKGROUND: Research studies emphasise the importance of the nurse practitioner (NP) role in the continuum of care, patient health outcomes, and the formation of a positive work environment. There are different reports about the extent of care delivered by the nurse practitioner in different fields of expertise and in different countries.
AIM: To present the characteristics of nurse practitioners in Israel, the extent of the role and practice, activities, role responsibilities, and job satisfaction.
METHODS: A descriptive computerised survey targeted palliative care nurse practitioners (PCNP). The study included nurses from all regions and districts in Israel, regardless of the nurses' health maintenance organisation or hospital affiliations.
RESULTS: NPs reported performing fewer frequent physical assessments, medication prescriptions issued, and lab and imaging referrals.
CONCLUSION: The complexity of the implementation of the NP role requires prior planning for role introduction, mentorship for the NP, and understanding of the interface between the NP and other professional staff.
Several immune checkpoint inhibitor therapies (CPIs) have been approved to treat metastatic urothelial cell carcinoma (mUC). Because of the favorable toxicity profile of CPI compared with chemotherapy, oncologists may have a low threshold to prescribe CPI to patients near the end of life. We evaluated trends in initiation of end-of-life systemic therapy in 1,637 individuals in the Flatiron Health Database who were diagnosed with mUC between 2015 and 2017 and who died. Rates of systemic therapy initiation in the last 30 and 60 days of life were 17.0% and 29.8%, respectively. The quarterly proportion of patients who initiated CPI within 60 days of death increased from 1.0% to 23% during the study period (p trend < .001). After CPI approval, end-of-life CPI initiation significantly increased among patients with poor performance status (p trend = .020) and did not significantly change among individuals with good performance status. The quarterly proportion of patients who initiated any systemic therapy at the end of life doubled (17.4% to 34.8%) during the study period, largely explained by increased CPI use. These findings suggest a dramatic rise in CPI use at the end of life in patients with mUC, a finding that may have important guideline and policy implications.
"The Pause" was first practiced by a nurse at a Level 1 trauma center to honor the death of a deceased patient. This practice has spread internationally and is used in emergency departments, intensive care, transplant, and oncology units, in addition to pre-hospital settings. There is a paucity of research published on the effects of The Pause for health care workers. We used a three-staged Delphi methodology to understand the barriers, benefits, and language used in The Pause. Analyses of email communication and interview transcripts suggest that The Pause poses minimal risk and has considerable benefits. Benefits include increased perceived team cohesion, a moment for reflection, and a method by which to honor a deceased patient. The Pause allows nurses to feel more present to meet the needs of the next patient they care for during a shift. Further research is merited.
Les établissements médicosociaux, et plus spécifiquement les MAS (Maisons d'Accueil Spécialisées) et les FAM (Foyers d'Accueil Médicalisé), sont particulièrement concernés par la question de l'accompagnement en soins palliatifs et en fin de vie : parce qu'ils accueillent un public vieillissant, mais aussi parce qu'ils sont amenés à accompagner des situations de plus en plus complexes. Pour les personnes polyhandicapées ou atteintes d'un handicap sévère, l'entrée en établissement représente souvent le choix d'un lieu de vie définitif : c'est le lieu où elles vont vivre et finir leur vie, parfois prématurément du fait de leur vulnérabilité. Ces personnes et leur famille ont souvent eu à vivre déjà des deuils successifs : celui de la "bonne santé", de la vie au domicile, de l'autonomie et d'une certaine indépendance dans les activités du quotidien. Il appartient ainsi aux institutions d'inscrire la dimension palliative dans leur projet d'établissement. Pourtant, cette démarche semble parfois difficile : le rapport sur la fin de vie dans les établissements pour personnes adultes handicapées réalisé par l'Observatoire National de la Fin de vie en 2013 évoque ainsi une "fin de vie invisible". L'accompagnement palliatif en MAS et en FAM peut en effet soulever de nombreuses questions : à partir de quand une personne atteinte d'une pathologie évolutive et incurable relève-t-elle de soins palliatifs ? En quoi consiste un accompagnement en fin de vie, quand commence-t-il ? Quel est le cadre légal, et comment s'applique-t-il aux établissements médicosociaux ? Comment recueillir l'expression de la volonté de personnes dyscommunicantes, comment évaluer et soulager leur douleur ? Comment accompagner ces personnes, mais aussi leurs proches et les autres résidents de l'établissement ? Jusqu'où doit-on aller ? L'ensemble de l'équipe doit-il être impliqué ? C'est pour réfléchir collectivement à ces différentes questions que le groupement des MAS et FAM a décidé, en décembre 2015, de mettre en place un groupe de travail sur la démarche palliative en MAS et en FAM. Ce groupe a concrétisé deux projets : l'organisation d'une journée d'étude régionale (le 17 novembre 2017), et la réalisation de cette étude.
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Les importantes évolutions démographiques et sociétales demandent que les soins palliatifs se développent au domicile des personnes malades. Les équipes mobiles, mal réparties sur le territoire, soutiennent la nécessité pour l'hôpital de se tourner vers la ville (HAD) et de participer à la coordination des soins. Celle-ci mobilise de nombreuses ressources et le médecin traitant y tient une place centrale. (R.A.).
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Introduction: Les soins palliatifs constituent un nouveau concept dans la pratique des soignants au Bénin. Les objectifs de notre travail étaient dâ€™évaluer la connaissance et de répertorier les pratiques infirmières en matière dâ€™accompagnement des patients en fin de vie.
Matériels et méthodes: Il sâ€™agit dâ€™une étude transversale descriptive qui sâ€™est déroulée du15/08 au 30/09/2014. Elle a concerné tous les infirmiers exerçant dans les services de médecine du centre national hospitalier universitaire Hubert-K.-Maga à Cotonou.
Résultats: Un total de 28 infirmiers a été enquêté. Seulement huit connaissaient la notion de fin de vie (soit 28,6 %), parmi lesquels sept avaient déclaré que les besoins principaux étaient de calmer la douleur (soit 87,5 %). Vingt-et-un infirmiers ont déclaré nâ€™avoir jamais participé à un accompagnement en fin de vie (soit 75 %).
Conclusion: Lâ€™accompagnement des patients en fin de vie est méconnu par le personnel infirmier. Les besoins de formation du personnel dans ce domaine sâ€™avèrent donc nécessaires.
BACKGROUND: Palliative care (PC) workforce shortages have led to a need for primary PC provided by non-specialists. The Care Management by Oncology Nurses (CONNECT) intervention provides infusion room oncology nurses with training and support to provide primary PC.
AIMS: To describe nurses' perspectives on the personal and professional impact of training and provision of primary PC as part of CONNECT.
METHODS: This qualitative study consisted of in-depth telephone interviews with 11 nurses at oncology practices in Pennsylvania. Data was analysed using qualitative content analysis.
FINDINGS: Nurses reported a sense of personal and professional fulfillment from providing primary PC, while noting the risk of increased emotional attachment to patients. Participation improved nursing communication skills. A supportive workplace helped to minimise stress related to incorporating primary PC into busy treatment schedules.
CONCLUSION: Providing primary PC challenges the task-oriented paradigm of nursing practice and will potentially alter the professional roles and workloads of infusion room nurses.
The average expected lifespan in Canadian long-term care (LTC) homes is now less than two years post-admission, making LTC a palliative care setting. As little is known about the readiness of LTC staff in Canada to embrace a palliative care mandate, the main objective of this study was to assess qualities relevant to palliative care, including personal emotional wellbeing, palliative care self-efficacy and person-centred practices (e.g. knowing the person, comfort care). A convenience sample of 228 professional and non-professional staff (e.g. nurses and nursing assistants) across four Canadian LTC homes participated in a survey. Burnout, secondary traumatic stress and poor job satisfaction were well below accepted thresholds, e.g. burnout: mean = 20.49 (standard deviation (SD) = 5.39) for professionals; mean = 22.09 (SD = 4.98) for non-professionals; cut score = 42. Furthermore, only 0â€“1 per cent of each group showed a score above cut-off for any of these variables. Reported self-efficacy was moderate, e.g. efficacy in delivery: mean = 18.63 (SD = 6.29) for professionals; mean = 15.33 (SD = 7.52) for non-professionals; maximum = 32. The same was true of self-reported person-centred care, e.g. knowing the person; mean = 22.05 (SD = 6.55) for professionals; mean = 22.91 (SD = 6.16) for non-professionals; maximum = 35. t-Tests showed that non-professional staff reported relatively higher levels of burnout, while professional staff reported greater job satisfaction and self-efficacy (p < 0.05). There was no difference in secondary traumatic stress or person-centred care (p > 0.05). Overall, these results suggest that the emotional wellbeing of the Canadian LTC workforce is unlikely to impede effective palliative care. However, palliative care self-efficacy and person-centred care can be further cultivated in this context.
This study evaluated a practice improvement initiative conducted over a 6 month period in 15 Canadian nursing homes. Goals of the initiative included: (1) use the Plan-Do-Study-Act (PDSA) model to improve advance care planning (ACP) within the sample of nursing homes; (2) investigate whether improved ACP practice resulted in a change in residentsâ€™ hospital use and ACP preferences for home-based care; (3) engage participating facilities in regular data collection to inform the initiative and provide a basis for reflection about ACP practice and; (4) foster a team-based participatory care culture. The initiative entailed two cycles of learning sessions followed by implementation of ACP practice improvement projects in the facilities using a PDSA approach by participating clinicians (e.g., physicians, social workers, nurses). Clinicians reported significantly increased confidence in many dimensions of ACP activities. Rates of hospital use and resident preference for home-based care did not change significantly. The initiative established routine data collection of outcomes to inform practice change, and successfully engaged physicians and non-physician clinicians to work together to improve ACP practices. Results suggest recurrent PDSA cycles that engage a â€˜critical massâ€™ of clinicians may be warranted to reinforce the standardization of ACP in practice.
Une des principales dispositions de la loi dite loi Claeys-Leonetti du 2 février 2016, est la sédation profonde et continue jusquâ€™au décès (SPCJD). Cette dernière soulève de nombreuses questions d'ordre à la fois éthique et pratique en France et à l'international. De ce fait, la manière dont la SPCJD se met en place sur le terrain fait lâ€™objet dâ€™un intérêt soutenu, notamment de la part des pouvoirs publics, à la fois pour vérifier que le dispositif est utilisé tel que lâ€™entend la loi ainsi que pour évaluer sâ€™il répond à la demande et permet dâ€™améliorer concrètement les insatisfactions pour lesquelles il a été instauré : qui la demande ? À qui est-elle proposée ? Dans quelles structures ? Combien de fois ? Comment cela se passe-t-il ? De façon conforme aux conditions précisées dans la loi ? Comment les équipes vivent-elles cette nouvelle pratique ? Les demandeurs et leurs proches sont-ils satisfaits ?
Le CNSPFV, interpellé sur le sujet, a mandaté un groupe dâ€™experts et de praticiens pour travailler sur ces questionnements et y apporter des éclairages. Le groupe a travaillé pendant plus dâ€™un an en débattant des enjeux éthiques, juridiques, administratifs mais aussi cliniques et pratiques soulevés par la SPCJD. Cet ouvrage rassemble les résultats de ces travaux et met en lumière les paradoxes que le groupe de travail a identifiés comme pouvant poser difficulté dans la pratique et empêcher lâ€™intégration de cette disposition dans les pratiques professionnelles.
When a patient enters the end stage of life threatening disease like cancer, treatment of pain and other symptoms must be considered to preserve quality of life (Gielen et al., 2011) . Nurses have an important role in the care of patients who suffered from life threatening diseases. End of life cares is one of the routine activities of nurses (Gott et al., 2012) . We surveyed knowledge, attitude and practice of nurses who worked in the hospitals of Neyshabur University of Medical Sciences towards palliative care from January 2016 to May 2016. A self-administered Persian questionnaire was used for data collection. The attitude scale was adopted from Frommelt Attitude toward Care of the Dying (Frommelt, 1991) and the knowledge questions were adopted from the Palliative Care Quiz for Nursing (Ross et al., 1996). The practice questions were also adopted from different related studies. Data analysis was performed by SPSS Statistics software for windows version 16. Our study showed that majority of nurses had favorable attitude but poor knowledge and practice towards palliative care. The results emphasize the importance and need for developing palliative care services in our hospitals.
Les directives anticipées (DA) ne sont pas suffisamment appliquées en milieu hospitalier gériatrique malgré leur large diffusion depuis la publication de la loi Claeys-Leonetti. Lâ€™objectif de cette étude était dâ€™analyser lâ€™état des connaissances des gériatres sur la notion des directives anticipées et dâ€™évaluer leurs pratiques dans le processus dâ€™information du patient et du recueil des DA.
CONTEXT: The Nursing Home (NH) culture change (CC) movement, which emphasizes person-centered care, is particularly relevant to meeting the unique needs of residents near the end-of-life (EOL).
OBJECTIVES: We aimed to evaluate the NH-reported adoption of person-centered EOL-CC practices and identify NH characteristics associated with greater adoption.
METHODS: We used NH and state policy data for 1,358 NHs completing a nationally representative 2016/17 NH Culture Change Survey. An 18-point EOL-CC score was created by summarizing responses from six survey items related to practices for residents who were dying/had died. NHs were divided into quartiles reflecting their EOL-CC score, and multivariable ordered logistic regression was used to identify NH characteristics associated with having higher (quartile) scores.
RESULTS: The mean EOL-CC score was 13.7 (standard deviation=3.0). Correlates of higher scores differed from those previously found for non-EOL-CC practices. Higher NH leadership scores and non-profit status were consistently associated with higher EOL-CC scores. For example, a three-point leadership score increase was associated with higher odds of a NH performing in the top EOL-CC quartile (OR=2.0, 95% CI:1.82, 2.30), while for-profit status was associated with lower odds (OR=.0.7, 95% CI:0.49,0.90). The availability of palliative care (PC) consults was associated with a greater likelihood of EOL-CC scores above the median (OR=1.5, 95%CI: 1.10,1.93), but not in the top or bottom quartiles.
CONCLUSION: NH-reported adoption of EOL-CC practices varies, and the presence of PC consults in NHs explains only some of this variation. Findings support the importance of evaluating EOL-CC practices separately from other culture change practices.
BACKGROUND: Health professionals' bereavement practices, including funeral attendance, have attracted relatively little attention from researchers. There may be a number of motivations and perceived benefits for health professionals to attend patient funerals. There are no published data comparing different groups of health professionals' perceptions of and practices in attending the funerals of their patients.
OBJECTIVE: To understand the attitudes and practices of health professionals toward attendance at patient funerals.
DESIGN: Cross-sectional nationwide online survey of attitudes and practices toward attendance at patient funerals based upon data from interviews with health professionals.
PARTICIPANTS: Australian health practitioners from medicine, nursing, psychology, social work, and other allied health professions (n = 1098).
RESULTS: Attendance at patient funerals was predicted by age, telling colleagues about own funeral attendance practices, having discussions with colleagues about funeral attendance, having long relationships with patients, and having a majority of patients at the end of life. Nonattendance was predicted by believing that if they cannot attend all funerals, they prefer not to attend any, feeling that colleagues disapprove of funeral attendance, believing that attending funerals is crossing the line between the personal and the professional, and being a psychologist.
CONCLUSIONS: Our findings emphasize the need for more open discussions and reflection among individuals and groups of health practitioners regarding attendance at funerals. Understanding the motivations of physicians, nurses, social workers, and other allied health practitioners to attend or not attend patient funerals is an important first step in working toward policies, protocols, and guidelines to support best practice.
INTRODUCTION: Advance care planning (ACP) and advance care directives (ACDs) play a vital role in preparing for end-of-life care. However, current literature suggests that uptake of ACP and ACDs in rural Australia is low, which may contribute to lower quality care for the older rural population, as patients' end-of-life wishes may not be recognised and acknowledged. This study aims to provide a current perspective on the attitudes and practices of healthcare workers from residential aged care facilities towards ACP and ACDs in the central west, far west and Orana regions of New South Wales, Australia.
METHODS: This was a mixed-methods study incorporating anonymous survey and individual interviews. Healthcare workers from 12 residential aged care facilities within the studied region completed surveys (n=109). The 40-item survey assessed participant demographics, training and experience with ACP and ACD, attitudes towards ACP and ACDs, and barriers and facilitators towards the use of ACP and ACDs in their organisation. Five participants were interviewed to explore these issues in more depth.
RESULTS: Almost three-quarters (71%) of respondents thought that ACP is necessary while almost half (48%) were involved with >5 ACDs in the past 12 months. Formal training was seen as beneficial by most (81%) but the importance of practical experience was also acknowledged. No statistically significant differences were found in attitudes between those with 5 years of experience. Avoidance of unnecessary resuscitation was a consistent theme in all interviews and the potential of a nurse-led model of delivery was identified. Patient factors such as decreased capacity to make informed decisions were identified as barriers that could be circumvented by pre-emptive implementation of ACP discussion. The rural setting was identified as a facilitator due to a supportive community, which helped to mitigate barriers such as limited staffing.
CONCLUSIONS: Attitudes towards ACP in rural New South Wales are highly positive. The rural setting is a facilitator to ACP, and ACDs are approached in a multidisciplinary fashion. Further training is an identified need although on-the-ground experience may be more beneficial.
Si les définitions des soins palliatifs et la littérature soignante intègrent la spiritualité, il est légitime de se questionner sur la place réservée à celle-ci dans la pratique professionnelle infirmière. Cet article met en évidence la démarche réalisée dans l’unité de soins palliatifs de l’Hôpital de Lavaux visant à intégrer la spiritualité dans les soins. Ce travail a été conduit en partenariat avec les professionnels du terrain, mais également avec les patients. Nous avons identifié différentes formes de spiritualités ainsi que les freins entravant leur expression. La démarche a abouti à l’introduction d’un outil de recueil de données adapté, nommé HOPE.