Background: Unregulated care providers (UCPs) are at the forefront of direct client care in the community. Their services are required to meet the demand for home-based palliative care from a growing older population, yet understanding of UCPs involvement in care is limited. The study aimed to identify the types and frequencies of tasks performed by UCPs in home-based palliative care to older clients (> 65 years) and their families and to describe UCPs’ engagement in care, and barriers and facilitators to their work.
Methods: A mixed method approach was used comprising a quantitative retrospective chart review of UCPs’ tasks (n = 66), qualitative content analysis of progress notes from clients’ charts (n = 85), and thematic analyses of in-depth interviews with UCPs (n = 10).
Results: A thematic structure was derived from analyses and integration of data from the chart review and interviews. The themes reflect the physical, affective, and relational aspects of UCPs involvement in the care of clients and families at the end of life. The findings indicate that although a significant proportion (63%) of the 13, 558 UCP tasks identified were directed toward meeting clients’ physical care needs, their presence in the home, made UCPs an important source of information on the client’s condition; observing and appraising the situation. Further, the nature of their work and frequent interactions with clients and families also presented opportunities for UCPs to provide emotional support; a role UCPs felt was integral to their work.
Conclusions: The study highlights the challenging nature of palliative care to older clients and their families whose needs are often complicated, situated within the unique environment of home care where supervision of UCPs is at a distance. Challenges and facilitators to UCPs’ work in this context are discussed with recommendations to support UCPs in their roles.
INTRODUCTION: All healthcare providers can influence the delivery and outcome of a palliative approach to care, ensuring that everyone has 'equitable access to quality care based on assessed need as they approach and reach the end-of-life'. This study mapped the delivery of palliative care in far west New South Wales (NSW), Australia, with objectives to: identify who was involved in providing such care in the Far West Local Health District (FWLHD), how they connect, and any gaps in the network describe what care was provided and identify any challenges to care provision. The mapping process and outcomes can be used to guide the implementation of new models of care by building on the localised knowledge of current networks, provision of care and challenges.
METHODS: Semi-structured interviews were undertaken with members of the specialist palliative care service and generalist healthcare providers within the FWLHD. Fifteen interviews were conducted over 7 months. Content analyses of interview transcripts identified processes and challenges as well as improvements for care. A network analysis was conducted to identify unidirectional connections and 'map' the services.
RESULTS: The vast network demonstrates extensive long-term involvement in palliative care as well as established connections and opportunities for improving communication between the services and providers involved in palliative care. Palliative practice is varied and challenging within the network; challenges include communication, early identification and education. Mapping the existing networks, resources and relationships proved invaluable to guide the implementation of a palliative approach to care.
CONCLUSION: The implementation of a palliative approach, as with any service model, requires agreement and engagement across relevant healthcare organisations, services and providers. Mapping and understanding the network of providers (and organisations) that support healthcare delivery before implementing new models of care will identify strengths and gaps within the network. This knowledge will then support new and integrated connections that enhance the provision of care so that it is acceptable, fit for purpose and regionally responsive.
Au Québec, le rôle des maisons de SP est central dans l'offre de soins en fin de vie. Avec l'évolution et le vieillissement de la société, des lois et du travail, qui se complexifient, les soignants et l'ensemble des intervenants se voient exposés à une demande émotionnelle croissante combinée à d'autres facteurs de stress. Pourtant, aucun programme visant à favoriser le bien-être au travail pour ce type d'intervenants ne semble disponible au Canada. S'inspirant d'écrits et d'expériences internationales, un processus novateur permettant l'élaboration et la mise en oeuvre d'un programme de bien-être pour intervenants en maison de soins palliatifs (SP) a été entrepris suivant l'influence de la recherche-action. L'article décrit cette démarche de coconstruction. Ce type d'innovation pourrait permettre l'amorce d'une transformation systémique reconnaissant l'importance de soutenir les acteurs den SP pour offrir des soins de fin de vie de qualité.
Interdisciplinary palliative care teams provide critical, comprehensive end-of-life care, although the accumulated literature points toward barriers that impede their effectiveness. The current phenomenological qualitative study presents perceptions of chaplaincy interns (N = 24) and social work interns (N = 23) after a semester-long end-of-life clinical training experience with interdisciplinary palliative care teams. Analysis of the end of semester reflections resulted in seven themes, which are fairly consistent with the literature base. The described experiential learning and reflections in the current study are powerful and can inform how to prepare practitioners for teamwork and compassionate end-of-life care.
To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.
OBJECTIVE: To establish a return on investment (ROI) for a pharmacist position on a hospital-based palliative care (PC) team.
BACKGROUND: Utilizing a pharmacist to provide PC services is often overlooked as a solution to physician shortages. Integration of a pharmacist into PC teams yields a favorable ROI.
METHODS: A 16-month retrospective review comparing PC patients at two hospitals with consultative PC teams. The PC teams at the two facilities had identical full-time equivalent team members, except for a PC pharmacist at Facility 1. The PC pharmacist's ROI was calculated based on cost savings created by utilizing the PC pharmacist as a physician extender and costs attributable to preventable adverse drug events (pADEs) identified by the PC pharmacist.
RESULTS: An annual ROI of 1.2 to 2.9 million dollars was calculated, $125,760 from physician time saved and $1.1-2.8 million dollars from pADEs. A statistically significant difference in rates of pADEs was realized between the PC pharmacist and non-PC pharmacists at Facility 1 as well as between pharmacists at Facility 1 (PC pharmacist and non-PC pharmacists) and pharmacists at Facility 2 (non-PC pharmacists).
CONCLUSION: A PC pharmacist's unique qualifications and perspective contribute to the value of care provided to PC patients. A favorable ROI that exceeds a pharmacist's annual salary was demonstrated in this analysis.
Limited studies exist regarding the timing, location, or physicians involved in do-not-resuscitate (DNR) order placement in pediatrics. Prior pediatric studies have noted great variations in practice during end-of-life (EOL) care. This study aims to analyze the timing, location, physician specialties, and demographic factors influencing EOL care in pediatrics. We examined the time preceding and following the implementation of a pediatric palliative care team (PCT) via a 5-year, retrospective chart review of all deceased patients previously admitted to inpatient services. Thirty-five percent (167/471) of the patients in our study died with a DNR order in place. Sixty-two percent of patients died in an ICU following DNR order placement. A difference was noted in DNR order timing between patients on general inpatient units and those discharged to home compared with those in the ICUs (p = 0.02). The overall DNR order rate increased following the initiation of the PCT from 30.8% to 39.2% (p = 0.05), but no change was noted in the rate of death in the ICUs. Our study demonstrates a variation in the timing of death following DNR order placement when comparing ICUs and general pediatric floors. Following the initiation of the PCT, we saw increased DNR frequency but no change in the interval between a DNR order and death.
Objectif: Les essais thérapeutiques de phase précoce se sont multipliés pour les maladies neurodégénératives pédiatriques incurables actuellement. Chez ces enfants, l’essai thérapeutique est la première voire l’unique proposition potentiellement curative. Pourtant, l’incertitude sur l’évolution demeure et les patients et leurs familles sont confrontés à la survenue d’une dégradation lente et évoluant vers un polyhandicap. Ces enfants, malgré l’inclusion dans un essai thérapeutique, relèvent toujours d’une prise en charge palliative. L’objectif de cet article est d’analyser le recours aux équipes de soins palliatifs chez des enfants atteints de maladie neurodégénérative inclus dans un essai thérapeutique.
Matériel et méthodes: Il s’agit d’un travail rétrospectif. Nous avons analysé le recours aux équipes de soins palliatifs chez les huit enfants qui avaient été inclus en France dans l’essai clinique de phase I-II d’enzymothérapie pour une leucodystrophie métachromatique. Pour ces patients, nous avons repris les données démographiques, les données d’évolution et de symptômes (juin–septembre 2017).
Résultats: Tous avaient évolué vers des complications et un polyhandicap. Seuls quatre enfants étaient pris en charge par des équipes de soins palliatifs qui avaient été contactées soit au moment de la sortie de l’essai, soit au moment où l’essai pouvait être poursuivi proche du domicile. Le centre investigateur assurait non seulement l’essai thérapeutique mais aussi la prise en charge symptomatique des enfants. Il semblait difficile d’approfondir les questions autour du décès et de l’aggravation, ce qui rend indispensable le recours à une équipe de soins palliatifs rompues à la discussion des processus décisionnels.
Conclusion: Il est possible d’être suivi par une équipe de soins palliatifs tout en étant inclus dans un essai thérapeutique. D’autres études devront préciser la faisabilité, le bénéfice pour les patients, l’intérêt et les éventuels risques d’un recours précoce aux équipes de soins palliatifs, probablement dès l’évocation d’une inclusion dans un essai thérapeutique.
BACKGROUND: Discharge from inpatient palliative care units to long-term care can be challenging. In the United Kingdom, hospice inpatients move to a care home if they no longer require specialist palliative care and cannot be discharged home. There is evidence to suggest that patients and families find the prospect of such a move distressing.
AIM: To investigate the issues that arise when patients are transferred from hospice to care home at the end of life, from the perspective of the hospice multidisciplinary team.
DESIGN: A qualitative study, using thematic analysis to formulate themes from focus group discussions with hospice staff.
SETTING/PARTICIPANTS: Five focus groups were conducted with staff at five UK hospices. Participants included multidisciplinary team members involved in discharge decisions. All groups had representation from a senior nurse and doctor at the hospice, with group size between three and eight participants. All but one group included physiotherapists, occupational therapists and family support workers.
RESULTS: A major focus of group discussions concerned dilemmas around discharge. These included (1) ethical concerns (dilemmas around the decision, lack of patient autonomy and allocation of resources); (2) communication challenges; and (3) discrepancies between the ideals and realities of hospice palliative care.
CONCLUSION: Hospice palliative care unit staff find discharging patients to care homes necessary, but often unsatisfactory for themselves and distressing for patients and relatives. Further research is needed to understand patients' experiences concerning moving to care homes for end of life care, in order that interventions can be implemented to mitigate this distress.
BACKGROUND: Palliative care team (PCT) is a common type of palliative care services. However, distress in cancer patients may be underestimated by hospital staff. Reasons for PCT consultation may be inconsistent with patients' actual needs.
OBJECTIVE: We aimed to examine the proportions of discrepancy between the reasons for PCT consultation and actual PCT activities.
DESIGN AND METHODS: We performed an observational study based on datasets of PCT activities at Kindai University Hospital. Differences in the proportion between reasons for PCT consultation and actual PCT activities were calculated.
RESULTS: Datasets of 368 hospitalized cancer patients for whom the PCT performed interventions were analyzed. The average patient age was 61 years. Hepatobiliary and pancreatic cancer were the most common primary sites (20%) followed by blood (12%) and lung (11%). Pain management was the most frequent reason for PCT consultation (67%) and PCT activities (65%). Delirium was more likely to be treated by the PCT, but less likely to be listed as a reason for consultation. The need for support for family and for decision making was less often recognized by hospital staff. Cancer-related fatigue (CRF) and depression were more likely listed as reasons for consultation, but less likely to receive PCT intervention.
CONCLUSIONS: Delirium and the need for family and decision-making support were underrecognized by hospital staff. PCT intervention for CRF and depression was often withheld because of very late referral. Appropriate timing of PCT consultations is important. Providing educational opportunities for hospital staff to comprehensively assess patient's multidimensional distress is needed.
BACKGROUND: Pharmacists have a key role to play in optimisation of medication regimens and promotion of medication safety. The role of specialist pharmacists as part of the multidisciplinary palliative care team, especially in the primary care setting, is not widely recognised.
AIM: To explore the perspectives of stakeholders about the gaps in the current model of community palliative care services in relation to medication management and to assess their opinions pertaining to the role of a specialist palliative care pharmacist in addressing some of those gaps.
DESIGN: Qualitative study utilising three focus groups involving 20 stakeholders. Thematic analysis was carried out using a framework approach and interpreted in the context of the Chronic Care Model for improving primary care for patients with chronic illness.
SETTING/PARTICIPANTS: Setting was a large regional Australian palliative care service. Participants included palliative care consumers and clinicians specifically patients, caregivers, physicians, nurses and pharmacists.
RESULTS: Five major themes emerged from the focus groups: access to resources, medicines and information; shared care; challenges of polypharmacy; informal caregiver needs and potential roles of a palliative care pharmacist. Gaps in access to medicines/resources, training for generalist practitioners, communication between treating teams and lack of support for patients and carers were cited as factors adversely impacting medication management in community-based palliative care.
CONCLUSION: While community-based palliative care is an essential aspect of meeting the health care demands of an ageing society, the current model has several gaps and limitations. An appropriately qualified and skilled pharmacist within the palliative care team may help to address some of the gaps in relation to medication access and appropriateness.
BACKGROUND: Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care.
AIM: To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture.
DESIGN: An emergent qualitative design, informed by theoretical and procedural direction from grounded theory research.
SETTING/PARTICIPANTS: Four focus groups held with palliative care staff (n = 28) in a single specialist palliative care service in Australia.
RESULTS: The following themes emerged: (1) determining the rules of engagement around discussion of diagnosis and prognosis, (2) navigating the challenge of language to patient understanding, (3) understanding migration experiences to establish trust, (4) maintaining the balance between patient safety and comfort care, (5) providing a good death experience through accommodation of beliefs, and (6) navigating the important role of family members while privileging patient preferences.
CONCLUSION: Underlying provider perceptions of caring for patients was that death is difficult in any language. Care was conceptualised as considering cultural and linguistic backgrounds within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group.
OBJECTIVE: We sought to explore the beliefs regarding palliative care team utilization, as well as increase consultation and awareness of the palliative care team's role in the NICU.
STUDY DESIGN: The study design in this Level 4 NICU included observational time series with multiple planned sequential interventions. Medical chart review was conducted to determine eligibility, and statistical process control charts were used to show performance over time.
RESULTS: Prior to implementation of the triggers, 26% received consultation, which increased to 46% after implementation. There was an increase in level of understanding, knowledge of team's role, and improved utilization. The time until initial consultation decreased from ~1.5 months to 1 week.
CONCLUSIONS: We observed a 20% increase in consultations. Key interventions included continual education, reminders, and clear postage of the trigger list. Written guidelines increase awareness of a palliative care team's role within a NICU, and provider satisfaction.
Opioids are first-line therapy for cancer-related pain. In addition, corticosteroids are commonly utilized as adjuvant analgesics for pain and other symptoms in the oncology setting with limited supporting data. A retrospective analysis was conducted evaluating adult hospitalized patients receiving opioids who received once-daily dexamethasone on the recommendation of a specialty palliative care team during their hospitalization from January 1, 2015, to January 1, 2016. Primary end point was to describe prescribing patterns of dexamethasone in this patient population and secondarily examining any effect on oral morphine equivalent daily dose (MEDD), numeric pain score (NPS), and unwanted effects at 24 and 48 hours after the first dose of dexamethasone. Fifty-nine patients received an average dose of 13 mg (SD = 10) of dexamethasone for cancer-related pain, primarily acute pain (n = 36, 61%). Many died before hospital discharge or soon thereafter (n = 28, 47.5%). Although not statistically significant, our study shows a decrease of 23% and 19% in MEDD and NPS, respectively, without change in WBC after dexamethasone. A specialty palliative care team most often used once-daily dexamethasone for cancer-related pain in patients near the end of life. There were trends toward lower MEDD and NPS, but more robust studies are needed for validation.
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams.
Aim: To obtain insight into the support provided by a new paediatric palliative care team from the parents’ perspective.
Design: An interpretative qualitative interview study using thematic analysis was performed.
Setting/participants: A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children’s hospital. The children suffered from malignant or non-malignant diseases.
Results: In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team’s involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members’ sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team’s support.
Conclusion: Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.
Le progrès conduit à allonger la durée de vie de la maladie cancéreuse métastatique, qui demeure le plus souvent une maladie évolutive et mortelle. Les soins se réalisent pendant une durée croissante au-delà des preuves fournies par les études cliniques, donc dans la complexité et l’incertitude sur les rapports bénéfice/risque. Respecter le cadre éthique, renforcé par la loi Claeys-Leonetti de février 2016, pour une maladie évolutive potentiellement mortelle, conduit à informer le patient de manière réaliste, évoquer le pronostic, développer les discussions anticipées, recueillir et respecter ses préférences. Ces évolutions conduisent à passer d’une médecine du consentement éclairé à une médecine du respect de la volonté, avec toute la complexité que suppose la détermination de cette dernière. Tandis que s’est structurée la pluridisciplinarité au diagnostic par l’association des expertises diagnostiques et thérapeutiques vis-à-vis de la maladie tumorale, émerge ainsi un besoin de structuration d’une autre pluridisciplinarité, interrogeant le sens pour la personne, la proportionnalité du soin, la trajectoire personnelle et la sécurisation du parcours de soins. Pour atteindre cet objectif, la précocité de l’alliance des expertises complémentaires est décisive. Ceci a conduit à des recommandations de la Société américaine d’oncologie clinique (ASCO). L’introduction de l’équipe de soins palliatifs est un temps essentiel et la qualité de la concertation onco-palliative est déterminante. Nous décrivons notre préconisation pour mettre en pratique une réunion de concertation (RCP) onco-palliative, véritable pivot d’un changement d’organisation du soin en situation d’incurabilité.
BACKGROUND: Generalists such as general practitioners and district nurses have been the main actors in community palliative care in Norway. Specialised oncology nurses with postgraduate palliative training are increasingly becoming involved. There is little research on their contribution. This study explores how general practitioners (GPs) and oncology nurses (ONs) experience their collaboration in primary palliative care.
METHODS: A qualitative focus group and interview study in rural Northern Norway, involving 52 health professionals. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically.
RESULTS: The ideal cooperation between GPs and ONs was as a "meeting of experts" with complementary competencies. GPs drew on their generalist backgrounds, including their often long-term relationship with and knowledge of the patient. The ONs contributed longitudinal clinical observations and used their specialised knowledge to make treatment suggestions. While ONs were often experienced and many had developed a form of pattern recognition, they needed GPs' competencies for complex clinical judgements. However, ONs sometimes lacked timely advice from GPs, and could feel left alone with sick patients. To avoid this, some ONs bypassed GPs and contacted palliative specialists directly. While traditional professional hierarchies were not a barrier, we found that organization, funding and remuneration were significant barriers to cooperation. GPs often did not have time to meet with ONs to discuss shared patients. We also found that ONs and GPs had different strategies for learning. While ONs belonged to a networking nursing collective aiming for continuous quality improvement, GPs learned mostly from their individual experience of caring for patients.
CONCLUSIONS: The complementary competences and autonomous roles of a specialised nurse and a general practitioner represented a good match for primary palliative care. When planning high-quality teamwork in primary care, organizational barriers to cooperation and different cultures for learning need consideration.
Heart failure is a significant burden to the healthcare system. Approximately 5.7 million adults in the United States were diagnosed with heart failure between 2009 and 2012 (Mozaffarian et al., 2016). The American Heart Association projects that direct costs for heart failure may be as high as $77.7 billion by 2030 (Heidenreich et al., 2011). Technological and pharmaceutical advancements have delayed the progression of the disease; however, it is predicted that close to half of individuals with heart failure will die within 5 years of the initial diagnosis (Braun et al., 2016; McIlvennan & Allen, 2016). Current research suggests that the utilization of palliative care and an interdisciplinary team approach to the care of patients with heart failure improves the quality of life and decreases utilization of healthcare resources at the end of life (Evangelista et al., 2014a). This performance improvement project examined the knowledge of a home healthcare interdisciplinary team's knowledge about palliative care in patients with heart failure, the 30-day readmission rate for patients enrolled in a home-based palliative care program, and documentation of advanced directives in a home healthcare organization.
BACKGROUND: Effective self-care in hospice is anecdotally proclaimed to reduce burnout risk. Yet, the topic has received little empirical attention.
PURPOSE: This study developed a model for predicting burnout risk from compassion satisfaction (CS), secondary traumatic stress (STS), and mindful self-care.
PARTICIPANTS: Hospice care professionals (n = 324).
DESIGN: Cross-sectional self-report survey.
RESULTS: Mindful self-care was correlated with CS ( r = 0.497, p < .01), Burnout ( r = -0.726, p < .01), and STS ( r = -0.276, p < .01). A multiple regression model indicated that the combined effect of CS, STS, and mindful self-care explained 73.7% of the variance in Burnout. Mindful self-care and STS mediated a relationship between CS and Burnout. Each self-care category was statistically significant protective factors against burnout risk ( p < .01). Associations with Burnout in order of strength were self-compassion and purpose (SC; r = -0.673), supportive structure (SS; r = -0.650), mindful self-awareness (MS; r = -0.642), mindful relaxation (MR; r = -0.531), supportive relationships (SR; r = -0.503), and physical care (PC; r = -0.435). However, for STS, only SS ( r = -0.407, p < .01) and MR ( r = -0.285, p < .05) were statistically significant protective factors.
CONCLUSION: Hospice care professional had higher self-care, CS, lower STS, and Burnout compared to published norms. Those who engaged in multiple and frequent self-care strategies experienced higher professional quality of life. Implications for hospice providers and suggestions for future research are discussed.
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and space. In this paper, we report on a long-term ethnographic study of a Pediatric Palliative Care Team (PPCT). Using the concepts of spatiality and temporality; Deleuze's concepts of smooth and striated spaces; Innis's concepts of space and time biases; Foucault's concept of heterotopian space-places with multiple layers of meaning; and a related concept of heterokairoi-moments in time with multiple possibilities-we consider how the PPCT constructs and reconstructs meaning in the midst of chaos, ethical dilemmas, and heartbreaking choices.