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: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single open-ended question from a larger survey are presented.
METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data.
RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings.
CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease.
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.
This article examines how hospice philosophy works in contemporary Danish hospice practice. The still sparse literature on Danish hospices indicates that hospice philosophy is influencing professional practice. In international palliative care literature, hospice philosophy is challenged for being overly normative in its ideal of the good death or on the other hand as threatened by the medical model. Drawing on the idea of hospice philosophy as providing meaning for everyday practice, this article explores how it is incorporated within the institutional order of contemporary Danish hospices. An ethnographic study was informed by participant observation and 49 interviews with professionals, patients, and families at three hospices in Denmark. The findings contribute to further understanding of the complexity of maintaining hospice philosophy in contemporary practice. Hospice practice works in an interpretive way with hospice philosophy to offer a "lived" philosophy and a means to an authentic death.
OBJECTIVES: Prognostic disclosure among patients with cancer permits open informed discussion about treatment preferences and encourages advance care planning. In rare cancers such as soft tissue sarcoma, discussions regarding prognostication are challenging. Little is known about the consequences of this for patients or their preferences for such information. This qualitative study explores patient-centered accounts of the value and timing of prognostic discussions.
METHODS: 24 semistructured interviews were conducted with soft tissue sarcoma patients attending one London cancer centre: 66% female, median age 53 (range 19-82). The study was cross-sectional and participants were at different stages of the advanced disease trajectory. Interviews were digitally recorded, transcribed verbatim and analysed thematically using the framework approach.
RESULTS: All participants understood the incurable nature of advanced sarcoma. However, prognostic discussions were rare, always patient initiated and did not include known survival data, despite direct participant enquiry. Most participants did not wish to discuss prognosis at initial diagnosis but wished to be offered the opportunity to discuss this at intervals of disease progression, despite reservations it may not be helpful. Participants expected discussions to be clinician initiated. Three themes emerged to explain this position and included (1) Rarity causing prognostic uncertainty referring to patient belief that prognostication in rare cancers was less likely to be accurate than for common tumours; (2) Avoiding the negatives referring to a wish not to hear unfavourable information and (3) Physical symptoms a better prognostic indicator than 'physician guess'.
CONCLUSIONS: Although 17/24 participants preferred not to discuss prognosis at initial diagnosis, they wished to have the opportunity to revisit prognostic discussions at intervals of disease progression. This may facilitate better advance care planning and end of life care.
Background: Medical discipline in India focuses on cure rather than comfort care. Palliative care is concerned with improving quality of life and relieving sufferings in patients with advanced incurable terminal diseases. Palliative care in India is still in infancy stage due to lack of knowledge, attitude and skills among health care providers. The reason being lack of training in under graduate as well as postgraduate teaching curriculum and lack of sensitization among policy makers.
Aims and Objectives: To assess the awareness, interest, practices and knowledge in palliative care among medical professionals working in a tertiary care hospital.
Materials and Methods: All participants were mailed proforma to be filled in a fixed format including details of their qualification, demographic data, their field of work, their training in palliative care and multiple choice questions regarding awareness interest, practices and knowledge of palliative care.
Results: Out of 186 respondents, 56% had not received any basic training in palliative care. 81% wanted palliative care education to be included in undergraduate curriculum. Poor program was identified as the most common barrier in learning palliative care. 77% respondents had no idea about home based palliative care services. 50.8% patients dies in hospital in their terminal stage. 88% were interested in learning safe opioid practices. Although 89.8% were aware of the need of palliative care in metastatic cancer but less than 50% were aware of the fact that palliative care is also required in MDR-TB and mental illness.
Conclusion: This study reflects data of an apex cancer institute of the country. The result of awareness is not very encouraging despite a dedicated palliative care department. So, we can assume what will be the palliative care status in other parts of India where there is no palliative care at all.
Recommendation: We strongly recommends that palliative care teaching should be incorporated in undergraduate curriculum to sensitize the students from the beginning. Budding residents in their learning phase can play an important role by learning and providing palliative care as the first person to come into contact with the patients are residents. There is a strong need of spreading palliative care awareness all over the country.
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.
Origine : BDSP. Notice produite par CREAIORSLR r7R0xBDr. Diffusion soumise à autorisation
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.).
Origine : BDSP. Notice produite par APHPDOC A9rkHR0x. Diffusion soumise à autorisation
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.