Hospital-based Palliative Care Research Articles

Palliative and supportive care needs of heart failure patients in Africa: a review of recent developments.

Despite the rising prevalence of heart failure in Africa, it remains unclear what supportive and palliative care services are required to meet patient needs. This review highlights recent contributions to knowledge of the supportive and palliative care needs of heart failure patients in Africa. Multiple epidemiological studies demonstrate the population-level burden of heart failure in Africa, characterized by low levels of ischaemic heart disease and a young mean patient age. However, few studies have addressed patients' specific palliative and supportive care needs. Only one recent published study investigated the quality of life of heart failure patients in Africa, and although conference abstracts suggest more research is forthcoming, these remain scarce. For service implementation, research is again sparse, but promising recent developments, including a hospital-based palliative care service for organ failure patients and a community-based programme to diagnose and manage heart failure, present future research avenues. Despite advances in epidemiological knowledge, very little research has investigated the illness experience and multidimensional needs of individuals. Obtaining this evidence through culturally sensitive research is essential to future development and testing of new and existing palliative care services for heart failure patients in Africa. http://links.lww.com/COSPC/A9

An Assessment of Hospital-Based Palliative Care in Maryland: Infrastructure, Barriers, and Opportunities

ContextMaryland recently passed legislation mandating that hospitals with more than 50 beds have palliative care (PC) programs. Although the state's health agency can play a key role in ensuring successful implementation of this measure, there is little actionable information from which it can guide resource allocation for enhancing PC delivery statewide. ObjectivesTo assess the PC infrastructure at Maryland's 46 community-based nonspecialty hospitals and to describe providers' perspectives on barriers to PC and supports that could enhance PC delivery. MethodsData on PC programs were collected using two mechanisms. First, a survey was sent to all 46 community-based hospital chief executive officers by the Maryland Cancer Collaborative. The Maryland Health Care Commission provided supplementary survey and semistructured interview data. ResultsTwenty-eight hospitals (60.9%) provided information on their PC services. Eighty-nine percent of these hospitals reported the presence of a structured PC program. The profile of services provided by PC programs was largely conserved across hospital geography and size. The most common barriers reported to PC delivery were lack of knowledge among patients and/or families and lack of physician buy-in; most hospitals reported that networks and/or conferences to promote best practice sharing in PC would be useful supports. ConclusionSystematic collection of state-level PC infrastructure data can be used to guide state health agencies' understanding of extant resources and challenges, using those data to determine resource allocation to promote the timely receipt of PC for patients and families.

How to Manage Hospital-Based Palliative Care Teams Without Full-Time Palliative Care Physicians in Designated Cancer Care Hospitals: A Qualitative Study.

To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. Semistructured focus group interviews were conducted, and content analysis was performed. A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs.

Palliative Care in the US and UK: Similar Challenges, Different Responses (TH344)

more differences than similarities between the United States and the United Kingdom regarding palliative care. Two researchers, one from each country, spent 4-6 months in the other country to evaluate the challenges and accomplishments of palliative care in the two countries. Data sources included interviews with experts and practitioners, articles, and policy documents. The clearest difference is in the funding of hospice care. Payers in the United States have established separate hospice benefits but largely force patients and physicians to forego disease-focused care to access hospice. There is no “mutual exclusivity” provision in the United Kingdom. However, while almost all health services in the United Kingdom are funded and provided by the National Health Services, this is not true of hospice care, which continues to be funded and provided disproportionately by charities. Overarching challenges today in both countries are taking palliative care into the mainstream and increasing access across a variety of settings. In the United Kingdom, this is being addressed through centralized policies and creating a funding mechanism for palliative care. In the United States, this is being addressed by the proliferation of outpatient palliative care services and experiments to offer hospice care concurrently with disease-focused care. Hospital-based palliative care in the two countries is similar, but there are differences in what is provided in community-based settings, including long term-care facilities and family homes. Adapting existing models of palliative care to meet the needs of

Life After Death: What Every Palliative Care Provider Should Know About Organ and Tissue Donation (FR412)

•Describe the process for organ donation following cardiac death.•Identify best practices for brain-death discussions and distinguish brain death from coma and persistent vegetative states. Hospital-based palliative care teams are becoming increasingly involved with the care of critically ill patients for whom organ donation is being considered. The two types of deceased donors include brain-dead donors and donors with cardiac arrest for whom life-sustaining therapies have been withdrawn. Families have a difficult time understanding the concept of brain death, and healthcare providers have misconceptions about brain death; therefore, effective communication is essential. Palliative care providers can use best practices in communication and avoid the pitfalls that are common in brain-death notification. Effective communication and education have been shown to help family members process complex medical information and also help with the bereavement period. Recent studies with bereaved family members of patients diagnosed with brain death show that there are still major gaps in palliative care services offered to this group. Media attention on famous cases creates further confusion regarding coma, brain death, and persistent vegetative states. We will explore the process of organ donation after cardiac death and the special communication issues around this process when life-sustaining treatments are being withdrawn and death is expected in a short time. We will discuss donor suitability and common barriers to donation after cardiac death. Honoring patient and family preferences regarding organ donation requires knowledge of the options available. This session will provide participants with the skills needed to understand all forms of organ and tissue donation.

Implementation of a Hospital-Based Home Palliative Care at regional level: A quantitative study of the Ospedalizzazione Domiciliare Cure Palliative Oncologiche program in Lombardy

Background: Home Palliative Care services can overcome trends of institutionalized dying and support higher rates of death at home. Home Palliative Care services rarely scale-up into regional health planning. This generates unwarranted variability in service provision and outcomes across patients. Lombardy Region sponsored a Hospital-Based Home Palliative Care program, which implemented a common service to oncological patients in the territory, with the purpose to align hospitals toward a target of 65% deaths at home. Aim: Our work assesses service characteristics and outcomes achieved by the regional program from 2009 to 2011. Design and setting: Descriptive analysis from an institutional database of service characteristics, regional expenditure, and outcomes (temporary hospitalization and patient discharge) representing 11,841 patients served by 24 providers in the period 2009–2011. Results: Targets of 65% deaths at home were achieved across the Region, with temporary re-hospitalization below 4.4%. The average pathway length stood above 1 month; intensity of care stood above ministerial and regional standards, with most home visits performed by nurses and physicians. Conclusions: The implementation of the regional program revealed three strengths (prompt identification and enrollment of eligible patients, and quantity of home visits) and two weaknesses (limited enrollment from general practitioners and multi-disciplinarity). This highlights opportunities for policy-makers to invest on regional protocols of Hospital-Based Home Palliative Care to reduce trends of institutionalized dying and align providers to homogeneous results.

Independent Validation of the Modified Prognosis Palliative Care Study Predictor Models in Three Palliative Care Settings

ContextAccurate prognostic information in palliative care settings is needed for patients to make decisions and set goals and priorities. The Prognosis Palliative Care Study (PiPS) predictor models were presented in 2011, but have not yet been fully validated by other research teams. ObjectivesThe primary aim of this study is to examine the accuracy and to validate the modified PiPS (using physician-proxy ratings of mental status instead of patient interviews) in three palliative care settings, namely palliative care units, hospital-based palliative care teams, and home-based palliative care services. MethodsThis multicenter prospective cohort study was conducted in 58 palliative care services including 16 palliative care units, 19 hospital-based palliative care teams, and 23 home-based palliative care services in Japan from September 2012 through April 2014. ResultsA total of 2426 subjects were recruited. For reasons including lack of followup and missing variables (primarily blood examination data), we obtained analyzable data from 2212 and 1257 patients for the modified PiPS-A and PiPS-B, respectively. In all palliative care settings, both the modified PiPS-A and PiPS-B identified three risk groups with different survival rates (P<0.001). The absolute agreement ranged from 56% to 60% in the PiPS-A model and 60% to 62% in the PiPS-B model. ConclusionThe modified PiPS was successfully validated and can be useful in palliative care units, hospital-based palliative care teams, and home-based palliative care services.

Suivi d’indicateurs dans le bilan d’activité d’une équipe mobile de soins palliatifs : un levier pour l’amélioration des pratiques

Early integrated palliative care is recommended in patients with incurable disease. Despite their development, hospital-based palliative care teams (PCT) are introduced late in the course of standard oncology care. The objective of this study is to describe the activity of an academic hospital-based PCT, using a standard format, which integrates indicators of early introduction and quality of end of life care, thus allowing a systematic analysis of its practice. The annual activity of the PCT is described from 2007 to 2012. Data are collected for each patient prospectively by the team: reasons for referral and activities of PCT, performance status and chemotherapy at the time of first referral, visit to emergency and admission to ICU. The number of patients referred to the PCT increased from 337 patients in 2007 to 539 in 2012, among whom 90% were cancer patients, 84% at metastatic stage. Relief of symptoms was the most frequent reason for referral. In 2012, 280 (64%) patients were receiving chemotherapy and 41% had a PS≤2 at the time of first referral. Half patients died each year (270 in 2012); 17% of these received chemotherapy in their last 14 days of life, 3% visited emergency room twice and 13% were admitted in ICU, once during their last month of life, 48% died in hospice or at home. The use of a standard format to describe the activity of hospital-based PCTs, the timing of their introduction and the quality of care is feasible. The generalization of this format for monitoring to assess the curative medicine interface/palliative could be a lever for improving the integration of palliative care.

Participation of the family in hospital-based palliative cancer care: perspective of nurses

The objective was to understand the perspective of nurses about the participation of the family in palliative cancer care and to analyze the nursing care strategies to meet their needs. Descriptive and qualitative research, conducted at the National Cancer Institute between January and March 2013, with 17 nurses. Elements of the Roy Adaptation Model were used for the interpretation of the data. Two categoriesemergedfrom the thematic analysis: perspective of nurses about the presence and valuation of family in the hospital; and appointing strategies to encourage family participation in care and meet their needs. This participation is essentialand represents a training opportunity for the purpose of homecare. Nurses create strategies to encourage it and seek to meet the needs. The results contribute to promote the family adaptation and integrity, in order to balance the dependent and independent behaviors, aimingfor quality of life and comfort. Further studies are neededdue to the challenges of the specialty.

Initiating decision-making conversations in palliative care: an ethnographic discourse analysis.

BackgroundConversations about end-of-life care remain challenging for health care providers. The tendency to delay conversations about care options represents a barrier that impedes the ability of terminally-ill patients to participate in decision-making. Family physicians with a palliative care practice are often responsible for discussing end-of-life care preferences with patients, yet there is a paucity of research directly observing these interactions. In this study, we sought to explore how patients and family physicians initiated decision-making conversations in the context of a community hospital-based palliative care service.MethodsThis qualitative study combined discourse analysis with ethnographic methods. The field research lasted one year, and data were generated through participant observation and audio-recordings of consultations. A total of 101 consultations were observed longitudinally between 18 patients, 6 family physicians and 2 pivot nurses. Data analysis consisted in exploring the different types of discourses initiating decision-making conversations and how these discourses were affected by the organizational context in which they took place.ResultsThe organization of care had an impact on decision-making conversations. The timing and origin of referrals to palliative care shaped whether patients were still able to participate in decision-making, and the decisions that remained to be made. The type of decisions to be made also shaped how conversations were initiated. Family physicians introduced decision-making conversations about issues needing immediate attention, such as symptom management, by directly addressing or eliciting patients’ complaints. When decisions involved discussing impending death, decision-making conversations were initiated either indirectly, by prompting the patients to express their understanding of the disease and its progression, or directly, by providing a justification for broaching a difficult topic.ConclusionsDecision-making conversations and the initiation thereof were framed by the organization of care and the referral process prior to initial encounters. While symptom management was taken for granted as part of health care professionals’ expected role, engaging in decisions regarding preparation for death implicitly remained under patients’ control. This work makes important clinical contributions by exposing the rhetorical function of family physicians’ discourse when introducing palliative care decisions.

The prevalence of life-limiting illness at a Ugandan National Referral Hospital: a 1-day census of all admitted patients

BackgroundAlthough models of hospital-based palliative care are common in high-income countries, they are rare in low-income countries despite the high burden of progressive disease.AimTo measure the proportion of all adult...

Evaluation of Hospital-Based Palliative Care Programs

This study evaluated current hospital-based palliative care programs using recommendations from the Center to Advance Palliative Care (CAPC) as a framework. Seven hospitals located in Buffalo, New York were included based on the existence of a hospital-based palliative care program. Data was collected from August through October of 2013 by means of key informant interviews with nine staff members from these hospitals using a guide comprised of questions based on CAPC's recommendations. A gap analysis was conducted to analyze the current state of each hospital's program based upon CAPC's definition of a quality palliative care program. The findings identify challenges facing both existing/evolving palliative care programs, and establish a foundation for strategies to attain best practices not yet implemented. This study affirms the growing availability of palliative care services among these selected hospitals along with opportunities to improve the scope of services in line with national recommendations.

Rural palliative care transitions from home to hospital: carers' experiences.

To document carer perceptions of patients' transitions from community to hospital-based palliative care in a rural setting. A qualitative study using an interview method at two time points. Rural palliative care providers: Kyneton District Health Service and the Macedon Ranges Palliative Care Service, Victoria. Six adult caregivers of six palliative care patients who had cancer were interviewed, three of whom were male and three female. Semistructured interviews were conducted exploring the caregivers' decisions to transition to hospital-based care and their perceptions of the transition to hospital and the hospital-based care these patients received. Thematic analysis revealed that carers made the decision for the patient in their care to transfer from home to hospital care. Carers experienced the transition to hospital care positively, particularly in relation to the communication of the patient's care needs. While communication issues arose while in hospital, they were not related to the transitional aspects of the palliative care service. The findings from this small, exploratory study suggest that these carers benefited from the new model of rural palliative care service provision. A large-scale, mixed-method study would enable more generalisable findings to be established.

Patterns of dignity-related distress at the end of life: A cross-sectional study of patients with advanced cancer and care home residents

Background: To provide effective palliative care in different settings, it is important to understand and identify the sources of dignity-related distress experienced by people nearing the end of life. Aim: To describe and compare the sources of dignity-related distress reported by cancer patients and care home residents. Design: Secondary analysis of merged data. Participants completed the Patient Dignity Inventory (assessing 25 sources of dignity-related distress) and measures of quality of life and depression. Setting/participants: A total of 45 adult patients with advanced cancer referred to hospital-based palliative care teams in London, United Kingdom, and 60 residents living in one of 15 care homes in London. Results: Care home residents were older and had poorer functioning. Both groups reported a wide range of dignity-related problems. Although the number or problems reported on the Patient Dignity Inventory was similar for the two groups (mean (standard deviation): 5.9 (5.5) for cancer patients and 4.1 (4.3) for care home residents, p = 0.07), there was a tendency for more cancer patients to report some existential problems. Experiencing physically distressing symptoms and functional limitations were prevalent problems for both groups. Patient Dignity Inventory problems were associated with poorer performance status and functioning for residents, with age and cognitive impairment for cancer patients and with poorer quality of life and depression for both groups. Conclusion: Although characteristics of the samples differed, similarities in the dignity-related problems reported by cancer patients and care home residents support research suggesting a common pathway towards death for malignant and non-malignant disease. A wider understanding of the sources of dignity-related distress would help clinicians provide more effective end-of-life care.

Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: A qualitative study

Background: The quality of palliative care is the foremost preoccupation of clinicians, decision-makers, and managers as well as patients and families. Major input from healthcare professionals is required to develop indicators for the quality of palliative care, but the involvement of patients and families is also recognized as essential, even though this is rarely achieved in practice. Aim: The objectives of this study were to identify (1) convergences and divergences in the points of view of different stakeholders (patients, families, healthcare professionals) relative to key elements of the quality of palliative care and (2) avenues for refining existing indicators of quality of palliative care. Design: Cross-sectional qualitative study. Setting/participants: There were six settings: two hospital-based palliative care units, one hospice, and three other medical units where a mobile palliative care team intervene. Semi-structured interviews were conducted among 61 patients, families, healthcare professionals, and managers. Results: Four major dimensions of quality of care are deemed critical by patients, their families, and professionals: comprehensive support for the patients themselves, clinical management, involvement of families, and care for the imminently dying person and death. Differences exist between various stakeholders regarding perceptions of some dimensions of quality of care. Avenues for improving current quality of care indicators are identified. Conclusion: Our study results can be used to refine or develop quality indicators that truly mirror the points of view of patients and their families and of healthcare professionals.

Whole Person Team Care

In the rapidly changing environment of 21st century healthcare, effective interdisciplinary team-based care is a key ingredient in providing whole person care across the continuum. Interdisciplinary teams face significant issues and challenges in providing whole person care given the boundaries that exist between various healthcare disciplines. Systemic institutional barriers and hierarchies commonly work against team communication, cooperation, and collaboration. These work environments contribute to work-related stress, staff turnover, inefficient, lower quality care, burnout, and compassion fatigue. Ultimately team environments that do not foster team member well-being are unlikely to find success in creating environments that foster whole person care. Given these realities, teams who hope to provide whole-person care need strategies for creating and sustaining a team environment of self-awareness, self-compassion, mindfulness and non-judgmental presence.This session will present the outcomes of three innovative approaches to interdisciplinary care team flourishing through case study analysis of hospital-based palliative care teams, and adult/pediatric hospice teams. The first intervention illustrates a process for developing and implementing a team retreat experience. Combining elements of team building, experiential learning and discussion of assigned readings, palliative care and hospice teams exhibit increased team trust, respect and communication across discipline boundaries. The second intervention demonstrates positive meaning-making through the use of a “spiritual narrative.” Through sustained reflection on a guiding metaphor, “spiritual narratives” enhance team identity formation, function, and sustainability. The third intervention outlines a model for group mindfulness meditation. Through regular practice of mindfulness meditation as an integrated component of the work day, team members sought to increase their self-awareness, presence, attunement and compassion in clinical interactions. Attendees of this workshop will be inspired and equipped to with new ways to enrich interdisciplinary team flourishing while providing excellent whole person care.

Palliative Care Consultation Versus Palliative Care Unit

Hospital length of stay (LoS) may be used to assess end-of-life care aggressiveness and health care delivery efficiency. We describe the terminal hospitalization LoS of patients with cancer managed by a hospital-based palliative care (PC) program comprising a palliative care consultation (PCC) service and an inpatient palliative care unit (PCU). A total of 328 in-hospital cancer deaths were divided into 2 groups. The PCU group included patients admitted by the PC team directly to the PCU. The PCC group included patients admitted by other specialties and referred to the PCC team. The LoS of the PCU group was significantly shorter than that of the PCC group (9.9 [±9.4] vs 17.8 [±19.7] days, respectively; P < .001). Direct terminal hospitalization to PCU is not associated with longer LoS among cancer deaths managed by a hospital-based PC service.

Ideal care and the realities of practice: interdisciplinary relationships in the management of advanced cancer patients in Australian emergency departments

Over the course of their illness, a person with cancer is likely to see a number of different healthcare professionals, including those in the emergency department (ED). There is limited research examining the interaction and communication between the involved healthcare professionals when such a patient presents to the ED. This study aimed to explore the views and experiences of interdisciplinary interactions of healthcare professionals caring for patients with advanced cancer who present to the ED. Focus groups and semistructured interviews were conducted with clinical staff working in ED, oncology and community and hospital-based palliative care services. Interviews and focus groups were recorded and transcribed verbatim. Thematic analysis was undertaken by three researchers independently. These themes were then discussed by the wider team and consensus reached on themes and subthemes. Eighty-three healthcare professionals participated in focus groups, and 11 were interviewed. The over-arching theme to emerge was one of a conflict between ideal care and the realities of practice, particularly arising where clinicians from different services were required to work together to provide care. This idea was further understood through a series of subthemes including communication, decision-making and understanding of other services. Participants articulated agreed upon ideals of optimal care for advanced cancer patients across all three services, however there was frequently discord between these ideals and the actual care provided. Service demands and the day-to-day stressors of practice appeared to influence people's actions and engender conflict.

Current State of Psychiatric Involvement on Palliative Care Consult Services: Results of a National Survey

ContextPalliative care consult services have emerged as an excellent resource for physicians seeking help with patients' symptoms. Symptoms include those of a psychiatric nature (e.g., depression, anxiety, delirium); however, little information is known about whether palliative care services include psychiatric input as part of multidisciplinary teams. ObjectivesTo explore 1) the current level of collaboration between psychiatrists and palliative care consult services across the U.S. and 2) the factors that support or restrict such involvement. MethodsA national survey was developed and distributed electronically to program directors identified in the National Palliative Care Registry maintained by the Center to Advance Palliative Care. Analyses examined trends in psychiatry involvement with hospital-based palliative care teams. ResultsThe survey had a 59% response rate, with final analyses including surveys completed by 260 palliative care program directors (67% inclusion rate from total respondents). Seventy-two percent of respondents reported some form of involvement with a psychiatrist on their palliative care service, with only 10% of those identifying a psychiatrist as a full- or part-time member of the team. Most respondents reported that they would like psychiatrists to be more involved with the palliative care services (71%). Secondary analyses of qualitative responses identified common impediments to increased psychiatry involvement, which included financial constraints, provider interest, and perceived disciplinary disconnect. ConclusionThere are shared objectives between psychiatry and palliative care; however, currently, co-involvement on treatment teams is quite limited. Future research is needed to identify ways to facilitate the interface of palliative care and psychiatry.

A Hospital-Based Palliative Care Service for Patients With Advanced Organ Failure in Sub-Saharan Africa Reduces Admissions and Increases Home Death Rates

ContextDespite emerging data of cost savings under palliative care in various regions, no such data have been generated in response to the high burden of terminal illness in Africa. ObjectivesThis evaluation of a novel hospital-based palliative care service for patients with advanced organ failure in urban South Africa aimed to determine whether the service reduces admissions and increases home death rates compared with the same fixed time period of standard hospital care. MethodsData on admissions and place of death were extracted from routine hospital activity records for a fixed period before death, using standard patient daily expense rates. Data from the first 56 consecutive deaths under the new service (intervention group) were compared with 48 consecutive deaths among patients immediately before the new service (historical controls). ResultsAmong the intervention and control patients, 40 of 56 (71.4%) and 47 of 48 (97.9%), respectively, had at least one admission (P < 0.001). The mean number of admissions for the intervention and control groups was 1.39 and 1.98, respectively (P < 0.001). The mean total number of days spent admitted for intervention and control groups was 4.52 and 9.3 days, respectively (P < 0.001). For the intervention and control patients, a total of 253 and 447 admission days were recorded, respectively, with formal costs of $587 and $1209, respectively. For the intervention and control groups, home death was achieved by 33 of 56 (58.9%) and nine of 48 (18.8%), respectively (P ≤ 0.001). ConclusionThese data demonstrate that an outpatient hospital-based service reduced admissions and improved the rate of home deaths and offers a feasible and cost-effective model for such settings.