On World Hospice and Palliative Care Day-8 October 2011-the Worldwide Palliative Care Alliance (WPCA) launched a global update highlighting the progress that has been made in hospice and palliative care over the past 5 years (Lynch et al, 2011; WPCA 2011). Encouragingly, the study shows that there has been a marked increase in the number of countries providing one or more hospice and palliative care services-from 49% of countries in 2006 to 58% in 2011. Here we explore some of the key factors behind this progress, focusing particularly on advocacy and policy. PMID:22068116
Background: Palliative care has become an emerging need of the day as the existing health-care facilities play only a limited role in the care of the chronically ill in the society. Patients with terminal illness in most cases spend their lives in the community among their family and neighbors, so there is the need for a multi disciplinary team for their constant care. Volunteers are primary care givers who originate normally from the same locality with local knowledge and good public contact through which they can make significant contributions in a team work by bridging the gap between the patient community and outside world. Aim: The present study has been undertaken to analyze the impact of palliative care services on patients by considering 51 variables. Materials and Methods: The respondents of the study include 50 pain and palliative care patients selected at random from 15 palliative care units functioning in Ernakulam district. The analysis was made by using statistical techniques viz. weighted average method, Chi-square test, Friedman repeated measures analysis of variance on ranks and percentages. Results: The study revealed that the major benefit of palliative care to the patients is the reduction of pain to a considerable extent, which was unbearable for them earlier. Second, the hope of patients could be maintained or strengthened through palliative care treatment. Conclusion: It is understood that the services of the doctors and nurses are to be improved further by making available their services to all the palliative care patients in a uniform manner.
This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care centres. Over the last two decades only two models of palliative care focusing on and developed in Aboriginal communities have been implemented. The seminal contribution to Aboriginal Palliative Care was in the form of a resource kit developed to support palliative care providers to examine their practice for cultural appropriateness for Aboriginal and Torres Strait Islanders. The 'living model' coming from this project is adaptive and flexible, enabling implementation in different Aboriginal country as a participative process with community input. The Australian government's National Indigenous Palliative Care Needs Study similarly indicated that Australian empirical research on Aboriginal palliative care service provision is in its infancy, and comprehensive data on the rates of Aboriginal access to palliative care services did not exist. What literature does exist is drawn together in an argument for the development and need for culturally specific Aboriginal palliative care models, which are culturally appropriate, locally accessible and delivered in collaboration and partnership with Aboriginal controlled health services. This is essential because Aboriginal people are a minority cultural group who are disconnected from mainstream health service delivery, and have a sense of cultural isolation when accessing mainstream services. It is preferable that palliative care is delivered in a collaboration between Aboriginal Controlled Health Service and mainstream palliative care services to ensure a dignified end of life for the Aboriginal person. These collaborations and partnerships are fundamental to ensure that a critical mass of Aboriginal clinicians are trained and experienced in end of life care and palliation. Developing palliative care programs within Aboriginal communities and training Aboriginal Health Workers, promoted and developed in partnership with the Aboriginal community, are important strategies to enhance palliative care service provision. Further partnerships should be championed in this collaborative process, acknowledging a need for palliative care models that fit with Aboriginal peoples' community values, beliefs, cultural/ spiritual rituals, heritage and place. PMID:23651262
O'Brien, Anthony P; Bloomer, Melissa J; McGrath, Pam; Clark, Katherine; Martin, Tony; Lock, Mark; Pidcock, Tina; van der Riet, Pamela; O'Connor, Margaret
The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality improvement, and demonstration of program impact to hospital administrators, private funders, and policymakers. To develop a set of core measures, CAPC convened a consensus panel in 2008 to focus on the topic of operational metrics for consultation services. Operational metrics, as distinct from clinical, customer and financial metrics, describe the characteristics of patients seen on the consultation service, such as age, disease, location, referring service and disposition. The panel arrived at 12 metric domains, all but one of which can be used for either internal programmatic use or for external comparisons of service characteristics/impact between different hospitals. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care consultation teams are encouraged to collect and report outcomes for each of the twelve metric domains described here. PMID:19115885
Weissman, David E; Meier, Diane E; Spragens, Lynn Hill
Excellent palliative care is available for patients with advanced lung cancer. Whether the same services are available for those with nonmalignant respiratory disease is less clear. A questionnaire was sent to 210 named respiratory physicians, each representing a major hospital in England, Wales, and Northern Ireland. A total of 107 replies were received; the response rate was 51.0%. Respondents cared
Partridge; A Khatri; L Sutton; S Welham; SH Ahmedzai
Background Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data. Results Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Conclusion Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.
Background. Studies indicate problems between different professional groups working with palliative care and the organisation of palliative home care at nursing homes. The purpose of this study is to examine international experiences and cooperative development initiatives regarding the organisation of community palliative care services. Method. The study has been carried out as a literature study based on bibliographic searches in international databases with selected key words. Results and Conclusion. The study of the literature identified 19 studies described in 20 articles that relate to development efforts and interventions regarding the organisation of palliative care in communities. Nearly, all of the studies were based on health care professionals' assessments of users (the relatives). However, it is unknown whether or how patients and relatives experience a positive effect of the interventions. The literature study shows that it is a great methodological challenge to complete and evaluate studies concerning organisation and cooperation using methods that make the results useful for others.
Raunkiaer, Mette; Timm, Helle
In Germany annually 1,500-3,000 children die from life-limiting diseases. Symptoms and course of disease differ considerably depending on the character of the underlying disease. Due to the desire of the children and their families to spend the end of life at home a paediatric palliative home care service was founded at the university children's hospital of Duesseldorf. In the last 20 years a specialised paediatric palliative team evolved from an unstructured voluntary activity. Prospective aims are an area-wide professional supply of all paediatric palliative patients and the improvement of the cooperation with the resident paediatrician and paediatric palliative nursing services. Furthermore the establishment of networks as well as a proper communication among the professionals is inalienable. PMID:19437372
Kuhlen, M; Balzer, S; Richter, U; Fritsche-Kansy, M; Friedland, C; Borkhardt, A; Janssen, G
This study examined the current level of palliative care services at the Minneapolis Veterans Affairs Medical Center (MVAMC). The findings of the study suggest that current palliative care services do not fully meet the palliative care needs of the existi...
M. M. Mylan
Background. Palliative care (PC) infrastructure has developed differently around the globe. Whereas some institutions consider the palliative care unit (PCU) a valuable component, others report that the sole provision of a state-of-the art palliative care consultation service (PCCS) suffices to adequately care for the severely ill and dying. Objective. To aid institutional planning, this study aimed at gathering patient data to distinguish assignments of a concomitantly run PCU and PCCS at a large hospital and academic medical center. Methods. Demographics, Eastern Cooperative Oncology Group performance status, symptom/problem burden, discharge modality, and team satisfaction with care for all 601 PCU and 851 PCCS patients treated in 2009 and 2010 were retrospectively analyzed. Results. Patients admitted to the PCU versus those consulted by the PCCS: (a) had a significantly worse performance status (odds ratio [OR], 1.48); (b) were significantly more likely to suffer from severe symptoms and psychosocial problems (OR, 2.05), in particular concerning physical suffering and complexity of care; and (c) were significantly much more likely to die during hospital stay (OR, 11.03). For patients who were dying or in other challenging clinical situations (suffering from various severe symptoms), self-rated team satisfaction was significantly higher for the PCU than the PCCS. Conclusion. This study presents a direct comparison between patients in a PCU and a PCCS. Results strongly support the hypothesis that the coexistence of both institutions in one hospital contributes to the goal of ensuring optimal high-quality PC for patients in complex and challenging clinical situations.
Frechen, Sebastian; Sladek, Markus; Ostgathe, Christoph; Voltz, Raymond
BACKGROUND: Providing palliative care is a growing priority for health service administrators worldwide as the populations of many nations continue to age rapidly. In many countries, palliative care services are presently inadequate and this problem will be exacerbated in the coming years. The provision of palliative care, moreover, has been piecemeal in many jurisdictions and there is little distinction made
Jonathan Cinnamon; Nadine Schuurman; Valorie A Crooks
Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions.
Meier, Diane E
Objectives This article describes successful institutionally-based programs for providing high quality palliative care to people with cancer and their family members. Challenges and opportunities for program development are also described. Data Sources Published literature from 2000 to present describing concurrent oncology palliative care clinical trials, standards and guidelines were reviewed. Conclusion Clinical trials have demonstrated feasibility and positive outcomes and formed the basis for consensus guidelines that support concurrent oncology palliative care models. Implications for nursing practice Oncology nurses should advocate for all patients with advanced cancer and their families to have access to concurrent oncology palliative oncology care from the time of diagnosis with a life-limiting cancer.
Bakitas, Marie; Bishop, Margaret Firer; Caron, Paula; Stephens, Lisa
Purposes Hospice programs in Korea have been largely based on volunteer activity, religious services, or social services. Recent government\\u000a policy of designating medically based inpatient palliative care services and per diem payment system made it necessary to\\u000a monitor the quality of these services. We examined the variation in the process and outcomes of palliative care services,\\u000a using 2009 data obtained from
Jin Young Choi; Dong Wook Shin; Jina Kang; Young Ji Baek; Ha Na Mo; Byung-Ho Nam; Won Seok Seo; Jong Hyock Park; Kee Taig Jung
Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services by children who died on a palliative care program. We conducted a retrospective chart review of all children who had a PMD who died on a single-center palliative care program. Twenty cases were identified. Services utilized by these patients included respite care, transition services, pain and symptom management, and end-of-life care. Prominent symptoms in the last 24 hours of life included respiratory distress, pain, nausea/vomiting, and anxiety; however, symptom management was very good. Utilization of services differed depending on the disease trajectory, with respite playing a critical role in the care of children with PMD. Good symptom management can be achieved. PMID:22447847
Ho, Charles; Straatman, Lynn
This report describes the multiple complementary analytic methods used to create a com- posite evaluation of the benefits of a hospital-based inpatient palliative care consultation ser- vice at Montefiore Medical Center in its preliminary phase. We evaluated data regarding 592 consecutive patients consulted by the palliative care service between November 2000, through March 2002. Standardized medical record reviews indicated that
Sean O'Mahony; Arthur E. Blank; Leah Zallman; Peter A. Selwyn
With the growth of palliative care services, interest in moral issues also seems to be growing. The controversial issue of euthanasia significantly provokes moral reflection on the care for dying patients. This article presents an analysis of the moral issue of euthanasia as it is discussed by the palliative care community in the professional journals of palliative care. Initially, the
Maaike A Hermsen; Henk A. M. J ten Have
Background The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers Aim To explore factors that support partnership working between specialist and generalist palliative care providers. Design Systematic review. Method A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011. Results Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care. Conclusion Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.
Gardiner, Clare; Gott, Merryn; Ingleton, Christine
This study was a retrospective analysis of prospectively collected data that aimed to map patients' care transitions following admission to a specialist palliative care service in Italy called Antea Centre. Patients' data was extracted from the Antea local database from 2007 to 2011. External transitions were defined as a change in the setting of care, with the patient no longer being cared for by Antea staff. Internal transitions were defined as a change in the setting of care, with the care still being provided by Antea staff. A total of 1123 patients out of 5313 admitted to the palliative service (21%) experienced transitions. Patients who experienced no transitions after their admission to the palliative care service were more likely to have a Karnofsky Performance Scale Index <30, to have been referred by a hospital physician, to have a shorter survival time, and to have home as their place of death (P<0.001). Although the patients with no transitions had worse clinical conditions, organisations should pay attention to reducing the possible negative effects of transitions, such as discontinuity of care and poor coordination. PMID:23665568
D'Angelo, Daniela; Chiara, Mastroianni; Vellone, Ercole; Alvaro, Rosaria; Casale, Giuseppe; Stefania, Lucatelli; Latina, Roberto; Matarese, Maria; De Marinis, Maria Grazia
... about such topics as religion, death, and afterlife. Palliative Care Websites American Academy of Hospice and Palliative Medicine ... Life Physician Education Resource Center European Association for Palliative Care Growth House, Inc. Hospice Cares International Hospice Institute & ...
Background: The way that health care systems in developing countries like India care for dying patients, has an impact on the expectations of such care for those who migrate to other countries faces. At the end of life, cultural issues may impact on the quality of life remaining and for that reason, it is important that particular cultural practices are understood. This paper describes a study that investigated the cultural issues of access to palliative care services for Indian migrants in Australia. Purpose of the Study: To investigate the experiences of the family members of terminally ill Indian migrants in Victoria, Australia. Objective of the Study: To explore the issues related to accessing palliative care services for Indian migrants; to identify the effectiveness of palliative care in supporting the patient and family and to recommend strategies for improving this care. Materials and Methods: A qualitative descriptive design was utilized. Up to 6 family members were selected for in-depth interviews in understanding cultural issues related to the palliative care services for a family member. Results: Analysis of the interviews revealed that families of Indian patients experience difficulties whilst receiving palliative care services, which fell into three main categories: Indian support systems, cultural issues, and caring experiences. Although each of these issues had a direct influence on the experience of terminal care that their family member received, cultural issues and support systems also influenced the caring experiences. Conclusion: Despite the successful implementation of palliative care services across Australia, there are still problems in accessing and receiving the services among minority and disadvantaged groups like various cultural groups.
Shanmugasundaram, Sujatha; O'Connor, Margaret
Purpose We assessed the availability and quality of palliative care for children with cancer according to national income per capita. Methods We surveyed physicians who care for children with cancer using the Cure4Kids website (http://www.cure4kids.org). Queries addressed oncology practice site; reimbursement; specialized palliative care, pain management, and bereavement care; location of death; decision-making support; and perceived quality of care. Responses were categorized by low -, middle-, and high-income country (LIC, MIC, HIC). Results Of 262 completed questionnaires from 58 countries (response rate, 59.8%), 242 were evaluable (55%). Out-of-pocket payment for oncology (14.8%), palliative care (21.9%), and comfort care medications (24.3%) was most likely to be required in LIC (p<0.001). Availability of specialized palliative care services, pain management, bereavement care, and institutional or national decision-making support was inversely related to income level. Availability of high-potency opioids (p=0.018) and adjuvant drugs (p=0.006) was significantly less likely in LIC. Physicians in LIC were significantly less likely than others to report high-quality pain control (p<0.001), non-pain symptom control (p=0.003), and emotional support (p=0.001); bereavement support (p=0.035); interdisciplinary care (p<0.001); and parental participation in decisions (p=0.013). Conclusion Specialized palliative care services are unavailable to children with cancer in economically diverse regions, but particularly in LIC. Access to adequate palliation is associated with national income. Program development strategies and collaborations less dependent on a single country’s economy are suggested.
Delgado, Eduardo; Barfield, Raymond C.; Baker, Justin N.; Hinds, Pamela S.; Yang, Jie; Nambayan, Ayda; Quintana, Yuri; Kane, Javier R
Research suggests that many minority ethnic patients who receive palliative care in the UK are satisfied with the service they are given. However, various studies have revealed that minority ethnic groups' experiences of care are far from perfect. The most significant problem for these patients centres on communication. This article presents some results from an exploratory study, commissioned by Luton Health Action Zone, to explore the role of communication in delivering effective palliative care services to South Asians living in Luton. Overall, it was found that the services provided are, in most cases, valued and seen as being effective. However, as the service providers who were interviewed readily recognized, there were areas where improvements could be made. The main issues were found to be the need to inform South Asian populations of the availability of palliative care services and the need to improve communication between patients and service providers. This article describes the communication problems that service providers and users face. It also identifies possible policy improvements aimed at developing the 'cultural competency' of services. PMID:12560794
Randhawa, Gurch; Owens, Alastair; Fitches, Rah; Khan, Zafar
There is a paucity of information on hospice and palliative care provision in Africa and only a weak evidence base upon which to build policy and practice development. We set out to assess the current state of provision across the continent, mapping the existence of services country by country and exploring the perspectives and experiences of those involved. A multi-method
David Clark; Michael Wright; Jennifer Hunt; Thomas Lynch
Background Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care. Methods Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences. Results The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being ‘actively treated’, and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to. Conclusions Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.
Background: There is a lack of studies concerning improvement of medication use in palliative care patients in nursing homes.Objective: This study was conducted to evaluate whether a geriatric palliative care team reduced unnecessary medication prescribing for elderly veterans residing in a nursing home.Methods: This was a retrospective, descriptive study of patients who died while residing in a geriatric palliative care
Erin M. Suhrie; Joseph T. Hanlon; Emily J. Jaffe; Mary Ann Sevick; Christine M. Ruby; Sherrie L. Aspinall
Introduction Specialised palliative care services (SPCS) aim to address the needs of patients and caregivers confronting life-limiting\\u000a illnesses but only half of the potential cohort are referred. Randomised controlled trials of SPCS provision can no longer\\u000a be ethically justified so there is a need to develop new methods to evaluate the net impact of SPCS for the whole community,\\u000a not just
David C. Currow; Alicia M. Ward; John L. Plummer; Eduardo Bruera; Amy P. Abernethy
Heart Failure Nurse Specialists play a key role in facilitating the provision of palliative care for patients with advanced heart failure where supportive and palliative care needs are comparable to those with cancer. This article describes the attitudes of heart failure nurse specialists towards palliative care in the management of patients and their interface with specialist services in the context of changing policy drivers over this time period. Data is drawn from two national surveys, the first in 2005, and repeated in 2010 following national educational initiatives. This comparison provides encouraging results that over five years there has been a growing partnership between heart failure nurses and palliative care services and that heart failure nurses play a pivotal role in ensuring provision of both general and specialist palliative care for their patients. The importance of integrating cardiology and palliative care clinical services, and aspects of local, regional and national service provision in the setting of the Innovative Care for Chronic Conditions framework is highlighted. PMID:21450524
Johnson, Miriam J; Maccallum, Annie; Butler, Jane; Rogers, Angie; Sam, Emily; Fuller, Alice; Beattie, James M
|Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…
Pollens, Robin D.
Home care (HC) is important for patients with cancer as performance status declines. Our study of 1224 patients at a Canadian cancer center examined the impact of an oncology palliative care clinic (OPCC) on HC referral. The HC referral frequency was calculated before and after the first OPCC consultation, in total and according to performance status (Palliative Performance Scale, PPS). Characteristics associated with HC referral were investigated. After the first OPCC consultation, there was an increase in HC referral from 39% (477 of 1224; 49% of those with PPS ?60) to 69% (841 of 1224; 88% of those with PPS ?60). Factors independently associated with HC referral were poor PPS (P < .001) and older age (P = .003). Thus OPCC involvement resulted in markedly increased HC referrals, particularly for older patients with poor performance status. PMID:22777408
Jang, Raymond W; Burman, Debika; Swami, Nadia; Kotler, Jennifer; Banerjee, Subrata; Ridley, Julia; Mak, Ernie; Bryson, John; Rodin, Gary; Le, Lisa W; Zimmermann, Camilla
Goals of work The goal of this study was to evaluate, at a population level, the association between specialized palliative care services\\u000a (SPCS) and short- and long-term caregiver outcomes.\\u000a \\u000a \\u000a \\u000a Patients and methods The Health Omnibus Survey, a face-to-face survey conducted annually in South Australia since 1991, collects health-related\\u000a data from a rigorously derived, representative sample of 4,400 households. This study included piloted
Amy P. Abernethy; David C. Currow; Belinda S. Fazekas; Mary A. Luszcz; Jane L. Wheeler; Maragatha Kuchibhatla
The Guidelines for a Palliative Approach in Residential Aged Care (Australian Government Department of Health and Ageing, 2004) are the result of the synthesis of evidence from three disciplines: geriatrics, gerontology and palliative care. Each paradigm challenges and informs the others, together developing a balanced and enriched understanding of palliative aged care. The guidelines address the challenges of the clinical and service delivery contexts of palliative care in residential aged care facilities, including the impact of complex, co-morbid illnesses with unpredictable trajectories; shorter, more dependent inpatient stays; and an evolving accreditation process. PMID:16835563
Currow, David C; Hegarty, Meg
BACKGROUND: As the populations of many developed nations continue to age at rapid rates it is becoming increasingly important to enhance palliative care service delivery in order to meet anticipated demand. Rural areas face a number of challenges in doing this, and thus dedicated attention must be given to determining how to best enhance service delivery in ways that are
Valorie A Crooks; Heather Castleden; Nadine Schuurman; Neil Hanlon
Living with Illness > Palliative Care Palliative Care Palliative Care Questions and Answers Palliative Care Questions and Answers Question Palliative Care Hospice Care Who can receive this care? Anyone with ...
BACKGROUND: Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. METHODS\\/DESIGN: Using the MRC Framework for the Evaluation of Complex Interventions we modelled a
Irene J Higginson; Bella Vivat; Eli Silber; Tariq Saleem; Rachel Burman; Sam Hart; Polly Edmonds
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI). PMID:20638035
Klick, Jeffrey C; Hauer, Julie
Background Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings.
How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five
David Field; Julia Addington-Hall
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Abstract Background: Cost savings associated with palliative care (PC) consultation have been demonstrated for total hospital costs and daily costs after PC involvement. This analysis adds another approach by examining costs stratified by hospital length of stay (LOS). Objective: To examine cost savings for patients who receive PC consultations during short, medium, and long hospitalizations. Methods: Data were analyzed for 1815 PC patients and 1790 comparison patients from two academic medical centers between 2005 and 2008, matched on discharge disposition, LOS category, and propensity for a PC consultation. We used generalized linear models and regression analysis to compare cost differences for LOS of 1 to 7 days (38% of consults), 8 to 30 days (48%), and >30 days (14%). Comparisons were done for all patients in both hospitals (n=3605) and by discharge disposition: survivors (n=2226) and decedents (n=1379); analyses were repeated for each hospital. Results: Significant savings per admission were associated with shorter LOS: For stays of 1 to 7 days, costs were lower for all PC patients by 13% ($2141), and for survivors by 19.1% ($2946). For stays of 8 to 30 days, costs were lower for all PC patients by 4.9% ($2870), and for survivors by 6% ($2487). Extrapolating the per admission cost across the PC patient groups with lower costs, these programs saved about $1.46 million for LOS under a week and about $2.5 million for LOS of 8 to 30 days. Patients with stays >30 days showed no differences in costs, perhaps due to preferences for more aggressive care for those who stay in the hospital more than a month. Conclusion: Cost savings due to PC are realized for short and medium LOS but not stays >30 days. These findings suggest savings can be achieved by earlier involvement of palliative care, and support screening efforts to identify patients who can benefit from PC services early in an admission. PMID:24003991
Starks, Helene; Wang, Song; Farber, Stuart; Owens, Darrell A; Curtis, J Randall
With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. PMID:23758771
Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C
Case managers can provide a valuable service for patients with frequent admissions for advanced chronic illness or who have end-of-life needs by early referrals for hospice and palliative care evaluations. Learn about palliative care and hospice options and educate patients and families to help them make choices. Make sure the family is capable of taking care of patients' needs if they are discharged to home. Monitor the caregivers to determine if they need extra support or respite services. PMID:23236620
Context Despite rapid proliferation of hospital-based palliative care consultation services (PCCS) across the country, there is little description of the dynamic processes that the PCCS and the non-PCCS hospital cultures experience during the institutionalization of a successful PCCS. Objectives To describe the institutionalization of a new PCCS in a quaternary care academic medical center (AMC) and highlight two themes, cost and quality, that pervaded the dynamics involved from the inception to the successful integration of the service. Methods Ethnography using longitudinal field observations, in-depth interviews, and the collection of artifacts. The study was performed in a 750-bed quaternary care ACM in the northeastern region of the U.S. Participants were a purposefully selected sample (n = 79) of (a) senior-level institutional administrators, including clinical leaders in nursing, medicine, and social work, (b) clinicians who used the PCCS, either commonly or rarely, and (c) members of the PCCS core and extended teams. Results Key infrastructure components that contributed to the successful integration of the PCCS included: top level interprofessional administrative buy-in to the quality and cost arguments for PCCS, PCCS leadership selection, robust data collection strategies emphasizing quality outcome data, the adoption of the “physician referral only” rule, and incremental and sustainable growth. The PCCS service has grown an average of 23% per year from 2003–2009. Conclusion An in-depth understanding of the dynamic interaction of the infrastructures and processes of a successful institutionalization, in their unique complexity, may help other PCCSs identify and negotiate attributes of their own circumstances that will increase their chances for successful and sustainable implementation.
Norton, Sally A.; Powers, Bethel Ann; Schmitt, Madeline H.; Metzger, Maureen; Fairbanks, Eileen; DeLuca, Jane; Quill, Timothy E.
Various medications are available for symptom management during palliative care of the neonate. Neonatal nurses are knowledgeable about the use of these agents as a part of curative care and should become familiar with them as an essential aspect of palliative care. Pharmacologic symptom management is only one facet of peaceful, pain-free, family-centered palliative care. For an overview of a complete protocol for end-of-life care for neonates and their families, review Catlin and Carter's article, "Creation of a Neonatal End-of-Life Palliative Care Protocol," which appeared in an earlier issue of Neonatal Network (Vol. 21, No. 4). PMID:15612421
Bell, Susan Givens
Objectives—To identify community nurses' perceptions of quality care provision for patients requiring palliative care.Design—Semi-structured interviews were conducted with community nurses working within the district nursing service. An adaptation of Flanagan's critical incident technique was employed to elicit factors associated with high or poor quality palliative care. Interviews were tape recorded and transcribed. Data were analysed using thematic content analysis, recurrent
Lynn Austin; Karen Luker; Ann Caress; Chris Hallett
Palliative care is coming to be regarded as a human right. Yet globally, palliative care development appears patchy and comparative data about the distribution of services are generally unavailable. Our purpose is to categorize hospice-palliative care development, country by country, throughout the world, and then depict this development in a series of world and regional maps. We adopt a multimethod
Michael Wright; Justin Wood; Thomas Lynch; David Clark
Palliative care is no longer solely an excercise in controlling suffering at the end of life. If we are to apply the principles of palliative care throughout the course of illness, both the culture and the organization of palliative care services must change. New partners must be enlisted in more sophisticated, increasingly academic partnerships. This change, while welcome and necessary, must come about with perservation of the core values of palliative care. PMID:15807059
Heart failure and palliative care services working in partnership: report of a new model of care Andrew Daley Bradford Marie Curie Hospice and Bradford Teaching Hospitals NHS Foundation Trust, Christine Matthews Bradford Marie Curie Hospice and Anne Williams British Heart Foundation Heart Failure Nurse Specialist, North Bradford Primary Care Trust
It is widely acknowledged that people with advanced heart failure have at least as great a need for supportive and palliative care as those with malignant disease. However, specialist palliative care services are seldom involved in their care in the UK. We describe a three-year collaboration between community-based heart failure nurse specialists and existing specialist palliative care services. In the
Offering people at the end stages of life the chance to die in their own homes is acknowledged good practice and can bring comfort to terminally ill people, but it can also be a hard choice to sustain. Carers may find it extremely difficult to cope with the emotional ordeal of losing a loved one and dealing with the medical problems that are involved but their voices are infrequently heard. This study reports an evaluation of an out-of-hours service operating in one primary care trust in north east England, and focuses on the use of a telephone support service, which backed up domiciliary visits by specialist palliative care nurses. Interviews, focus groups and an open-ended questionnaire were carried out with 27 participants. Results revealed that staff, patients and carers appreciated being able to telephone the service (reactive). In addition carers felt particularly well supported by the service staff who proactively telephoned them on an agreed basis as part of the highly individualized telephone monitoring scheme. Such services support the call for the creation of a whole system approach for both palliative care patients and their carers. PMID:20871499
Carlebach, Sarit; Shucksmith, Janet
Three issues seem to animate those who advocate the move toward a broad allowance of physician-assisted death. The first is the supposed failure of palliative care in extreme cases. We challenge the notion that palliative care ever fails. When palliative sedation is understood to be a routine continuation of palliative care, as opposed to a last-ditch response to a dramatic failure, then palliative care will never fail. The second focuses on helping patients maintain a sense of control in their final days and hours. We believe that continued intimate involvement in each of the final stages that is essential in the palliative care-palliative sedation continuum will be more effective palliative care and still grant control to the patient under the principle of respect for autonomy. The third issue is the charge that palliative sedation is a euphemism for physician-assisted death. We reject that charge. PMID:18370896
Carr, Mark F; Mohr, Gina Jervey
Complementary therapies have found increasing vogue in the management of patients with cancer, although little formal evaluation has been undertaken. We report on our experience of offering hynotherapy to palliative care outpatients in a hospice day care setting. During 2 1/2 years, 256 patients had hypnotherapy, all singly; two-thirds (n = 104) were women. Only 13% (n = 21) had four or more treatment sessions. At the time of survey, the 52 patients still alive were mailed an evaluation sheet, of whom 41 responded. 61% reported improved coping with their illness. 7% (n = 3) reported harmful or negative effects from hypnotherapy. Amongst those whose coping was unchanged, many found the therapy a pleasant experience. 35 respondents (85%) appended positive comments to their questionnaire returns. Despite the limitations of a retrospective questionnaire, our findings suggest that hypnotherapy, used within strict guidelines in patients with advanced cancer, is a safe complementary therapy to enhance coping.
Finlay, I G; Jones, O L
The author, former chief of a medical department and experienced in quality management, describes the development of quality standards by palliative ch, the Swiss Society for Palliative Care. These standards are the basis for explicit quality-criteria. The performance of an institution for palliative care is evaluated against these criteria, during an audit and peer review. Further information is given concerning the label Quality in Palliative Care. The author describes the importance oft the PDCA-cycle as an instrument for permanent improvement. Institutions with little experience in quality management are adviced to start on a smaller scale and use internal audits. Finally the author gives some thoughts as to the limitations of quality management in palliative care. PMID:22334204
“If you want to travel quickly, go alone. But if you want to travel far, you must go together”. African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members.
"If you want to travel quickly, go alone. But if you want to travel far, you must go together". African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361
Despite evidence of high psychological distress and unmet needs, evaluated interventions for informal caregivers in palliative care are few. This study involved an observational outcome evaluation of attendees, and a comparison group, in specialist home palliative care. The measures included carer psychological status and patient physical status at baseline, 8 weeks, and 20 weeks. Qualitative data were collected regarding content,
Richard Harding; Irene J Higginson; Celia Leam; Nora Donaldson; Alison Pearce; Rob George; Vicky Robinson; Liz Taylor
Purpose The present study is aimed to assess the availability and use of complementary medicine (CM) therapies in Italian palliative\\u000a care hospices, and the support services available to caregivers and hospice staff.\\u000a \\u000a \\u000a \\u000a \\u000a Methods A national sample of 30 hospices meeting study criteria provided data by means of telephone interviews.\\u000a \\u000a \\u000a \\u000a Results All hospices offered spiritual assistance and at least one other form of CM,
Monia Belletti; Luca Mallia; Fabio Lucidi; Simona Reichmann; Chiara Mastroianni; Maria Grazia De Marinis; Giuseppe Casale
Background As the populations of many developed nations continue to age at rapid rates it is becoming increasingly important to enhance palliative care service delivery in order to meet anticipated demand. Rural areas face a number of challenges in doing this, and thus dedicated attention must be given to determining how to best enhance service delivery in ways that are sensitive to their particular needs. The purposes of this article are to determine the vision for establishing secondary palliative care service hubs (SPCH) in rural communities through undertaking a case study, and to ascertain the criteria that need to be considered when siting such hubs. Methods A rural region of British Columbia, Canada was selected for primary data collection, which took place over a five-month period in 2008. Formal and informal palliative care providers (n = 31) were interviewed. A purposeful recruitment strategy was used to maximize occupational and practice diversity. Interviews were conducted by phone using a semi-structured guide. Interviews were audio recorded and transcribed verbatim. Data were managed using NVivo8™ software and analyzed thematically, using investigator triangulation to strengthen interpretation. Results Four themes emerged from the dataset: (1) main SPCH features; (2) determining a location; (3) value-added outcomes; and (4) key considerations. It was found that participants generally supported implementing a SPCH in the rural region of focus. Several consistent messages emerged, including that: (1) SPCHs must create opportunities for two-way information exchange between specialists and generalists and communities; (2) SPCHs should diffuse information and ideas throughout the region, thus serving as a locus for education and a means of enhancing training opportunities; and (3) hubs need not be physical sites in the community (e.g., an office in a hospice or hospital), but may be virtual or take other forms based upon local needs. Conclusion Visioning innovation in the provision of palliative care service in rural communities can be enhanced by consultation with local providers. Interviews are a means of determining local concerns and priorities. There was widespread support for SPCH coupled with some uncertainty about means of implementation.
Crooks, Valorie A; Castleden, Heather; Schuurman, Nadine; Hanlon, Neil
|Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)|
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
Palliative care strives to improve the quality of life of patients and their families facing the problems associated with life-threatening illness. In the cancer trajectory early multidisciplinary intervention achieving symptom control seems rewarding in terms of improving quality of life and even survival. Palliative care in non-malignant diseases is still an unexplored area. In palliative care the symptom pain is by far the most well investigated symptom and opioids constitute the cornerstone in its treatment, although the consequences of long-term treatment is still under investigation. PMID:23428265
"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts. PMID:17457779
Summary The confluence of enhanced attention to primary care and palliative care education presents educators with an opportunity\\u000a to improve both (as well as patient care) through integrated teaching. Improvements in palliative care education will have\\u000a benefits for dying patients and their families, but will also extend to the care of many other primary care patients, including\\u000a geriatric patients and those
Susan D. Block; George M. Bernier; LaVera M. Crawley; Stuart Farber; David Kuhl; William Nelson; Joseph O’Donnell; Lewis Sandy; Wayne Ury
A secondary analysis of 2 qualitative studies was conducted to explore the experiences of suffering caused by interactions with health care providers in the hospital setting. Interview transcripts from 20 palliative care patients and 15 palliative care informal caregivers in University Malaya Medical Centre were thematically analyzed. The results of health care interactional suffering were associated with themes of attention, understanding, communication, competence, and limitation. These 5 themes may serve as a framework for the improvement in interaction skills of health care providers in palliative care. PMID:23689367
Beng, Tan Seng; Guan, Ng Chong; Jane, Lim Ee; Chin, Loh Ee
The U.S. Department of Veterans Affairs (VA) has been a leader in program development and service delivery in the areas of geriatrics, hospice and palliative care for decades. Zelda Foster, MSW, serving as the Chief of Social Work Services at the Brooklyn VA Hospital for almost 20 years, was a force in the early days of the palliative care and
Louisa Daratsos; Judith L. Howe
In Japan, palliative care team (PCT) services have been covered by National Health Insurance since 2002. The primary aims of this study were to compare the characteristics of patients who received PCT services with those admitted to palliative care units (PCU), and to clarify the medical treatments and symptom improvement during the first week after consultation with the PCT. This
Tatsuya Morita; Koji Fujimoto; Yo Tei
Palliative care is becoming a professional knowledge and performance field by means of the proposal of another "regimen of truths". Such fact can be observed in the broadening of palliative care services and in the increase of publications on the subject. This study aims at learning the discourses on palliative care that the nurses have conveyed in the nursing publications. For such purpose we approached the Cultural Studies, especially those inspired on Michel Foucault in order to analyze articles published in two national nursing periodicals from 1999 to 2007. Among the statements, we point out those that see the hospital as a site where the patient is divested of his individuality and identity and those that mention such care as capable of providing the family and the patient with the best quality of life possible during the death process. PMID:20027948
da Silva, Karen Schein; Kruse, Maria Henriqueta Luce
Currently more and more patients with cancer will be treated at home, especially at the final stage of their disease. Relatives and nursing services will therefore be confronted with acute emergency situations concerning these patients. The handling of these acute situations may be beyond the relatives' coping capacity. For that reason the pre-hospital emergency system (2.5% of all emergency calls) will be confronted with very specific needs of these patients. Emergency situations of palliative patients at home are more predictable than other circumstances. It is thus possible to achieve a practicable preparation for such emergency situations. An individual "emergency plan" should be created for these cases.. The plan may be processed in an emergency situation. It may then be possible to avoid emergency calls and make it possible for the patient to remain at home. This promotes the patient's quality of life and his/her predominant desire to stay at home after the emergency. An advance directive should be made which records the patient's wishes. Because of the complexity of an advance directive it is essential to indicated the patient's wishes in a short and quickly read form in case an emergency arises. This is one of the reasons for producing a short version like the "Göttingen palliative emergency card". In acute situations it is then possible quickly to make known the patient's wishes The patient may be given the possibility of remaining at home after an emergency situation has been dealt with successfully. PMID:18431708
Wiese, C H R; Bartels, U; Geyer, A; Duttge, G; Graf, B M; Hanekop, G G
Background: Parkinson's disease is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care for people with Parkinson's disease, services have been slow in developing. Obstacles include poor understanding and recognition of palliative care needs, the role for specialist palliative care services and an agreed structure for sustainable palliative care provision. Aim: To summarise the evidence base for palliative care in Parkinson's disease, linking current understanding with implications for clinical practice and identifying areas for future research. What is known: Convention recognises a final 'palliative phase' in Parkinson's disease, while qualitative studies suggest the presence of palliative care need in Parkinson's disease from diagnosis. Clinical tools to quantify palliative symptom burden exist and have helped to identify targets for intervention. Dementia is highly prevalent and influences many aspects of palliative care in Parkinson's disease, with particular implications for end-of-life care and advance care planning. Implications for clinical practice: The 'palliative phase' represents a poor entry point for consideration of palliative care need in Parkinson's disease. An alternative, integrated model of care, promoting collaboration between specialist palliative and neurological services, is discussed, along with some specific palliative interventions. What is unknown: Limited evidence exists regarding timing of palliative interventions, triggers for specialist referral and management of terminal care. Implications for future research: Research examining access to palliative care and management of terminal symptoms will assist development of sustainable, integrated palliative care services for Parkinson's disease. PMID:23838377
Richfield, Edward W; Jones, Edward Js; Alty, Jane E
This article discusses the language used in palliative care and the possibility of exclusive language being a barrier to uptake of services by users. The author illustrates this with an analysis of mission statements from palliative care services in an Australia state. Although language is just one aspect affecting service use, this author argues that services need sensitivity about the language they use, so that public statements are understandable and remain consistent with the philosophy of care. PMID:15924037
Improving the management of dying children has always been a common desire among staff who take care of children with incurable life-threatening diseases. Pediatric oncologists are beginning to structure their practice based upon the approach to palliative care given to adults. In the first part of this report, the authors focus on technical care: comfort control and symptoms. The second part is devoted to pain management, a major aspect of pediatric palliative care. In the third part, psychosocial issues are developed, taking into account the point of view of children, siblings, parents and staff. PMID:10668088
Suc, A; Bertozzi, A I; Rubie, H; Merel, C; Izard, P; Galinier, P; Robert, A
Introduction Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management.
McCarthy, Mark; Brajovic, Mina
A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness. PMID:23977778
Daly, Donnelle; Matzel, Stephen Chavez
The heart failure illness trajectory is both complex and unpredictable, which makes providing palliative care services to patients with heart failure a challenge. As a result, although services are needed, few tend to be offered beyond basic medical management. The traditional model of palliative care is typically based on palliative care being considered a system of care delivery most appropriate for patients with a predictable illness/death trajectory, such a terminal cancer. This type of model, which is based on the ability to predict the course of a terminal disease, does not fit the heart failure trajectory. In this paper, we propose a new model of palliative care that conceptualizes palliative care as a philosophy of care that encompasses the unpredictable nature of heart failure.
Hupcey, Judith E.; Penrod, Janice; Fenstermacher, Kimberly
The spiritual dimensions of surgical palliative care encompass recognition of mortality (physician and patient); knowledge of moral and ethical dilemmas of medical decision making; respect for each individual and for all belief systems; responsibility to remain physically and psychologically present for the patient and family; and knowledge of when chaplains, palliative care professionals, or social workers should be consulted. Certain aspects of surgical palliative care distinguish it from palliative care in other medical disciplines such as the 2 definitions (palliative procedure and palliative care), treating a disproportionate share of patients who suffer unforeseen tragic events, and the surgical system. PMID:21419253
Tarpley, Margaret J; Tarpley, John L
Palliative care within sub-Saharan African remains relatively new, with one service delivery model used being home-based care (HBC), a well-established mode of care provision within the HIV/AIDS context. The integration of palliative care into HBC services is a major advance in increasing its accessibility in the region. However, challenges exist to the provision of palliative services through HBC, especially for nurses, and these challenges, along with some of the responses to them, are discussed. PMID:20463514
Downing, Julia; Powell, Richard A; Mwangi-Powell, Faith
Low- and medium-resource countries are facing a significant increase in the incidence of noncommunicable diseases such as cancer. Unfortunately, the majority of patients with cancer present with advanced disease, and disease-directed treatment may be unlikely to be effective and/or not available. Globally, there will be a growing need for palliative care services.There has been significant progress in the provision and integration of palliative care into the health care policy and systems. Nonetheless, palliative care services vary significantly between regions of the world and also between countries in the same region. Some common barriers to care include the lack of a trained workforce to provide palliative care, lack of availability of opioids or the restriction of their use, cultural attitudes of physicians and patients, and also funding. Despite these challenges, there are examples of low- and medium-resource countries that are providing excellent palliative care that is being integrated into the health care system and the cancer care continuum.This article provides an overview of the progress in providing palliative care in low- and medium-resource countries. In addition, more specific information is provided on palliative care in low-resource countries in Latin America, Asia, and Africa. Finally, a more personal perspective is presented on the development of palliative care in Ethiopia, as an example. PMID:24051614
Basu, Arnab; Mittag-Leffler, Barbro Norrström; Miller, Kenneth
Palliative care is poised to become a universally available approach to health care which addresses both the needs of patients and families experiencing serious, progressive, and life-threatening illness, and also the costs of delivering such needed services. Palliative care and hospice are part of a continuum of care with palliative care provided at any time during the illness trajectory, while hospice care is offered at the end of life. Within the context of health care reform, we believe palliative care addresses critical economic imperatives while enhancing quality of life even as death approaches. As leaders in health care, advance practice nurses, specifically, and the nursing community in general are best positioned with the knowledge, expertise, and commitment to advance the specialty of palliative care and lead the way in the reform of America's health care system. PMID:22849014
Sherman, Deborah Witt; Cheon, Jooyoung
... Name: Organization Type: Hospice Multi-Location Hospice Provider Palliative Care Provider Area Served: Country: UNITED STATES State: County ... Privacy Informacion en Español Copyright National Hospice and Palliative Care Organization 1731 King Street, Suite 100 Alexandria, Virginia ...
Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care. In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information.
Michelson, Kelly Nicole; Steinhorn, David M.
End of life care: a discursive analysis of specialist palliative care nursing Aim. The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. Background.
Julie K. Skilbeck; Sheila Payne
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial, and spiritual. This article discusses illness trajectories and prognostic estimates, prognostic tools, educating physicians and nurses in palliative care, research in palliative medicine, and palliative care in hospitals and the community. PMID:21628032
Access to palliative care is insufficient in many countries around the world. In an effort to improve access to palliative care services and treatments, a public health approach as suggested by the World Health Organization was implemented in Colombia to improve opioid availability, increase awareness and competences about palliative care for healthcare workers, and to include palliative care as a component of care in legislation. As a result, opioid availability has improved, a mandatory palliative care course for medical undergraduate students has been implemented and a palliative care law is being discussed in the Senate. This article describes the strategy, main achievements and suggestions for implementing similar initiatives in developing countries. PMID:21228093
Leon, Marta; Florez, Sandra; De Lima, Liliana; Ryan, Karen
\\u000a A multitude of diagnoses can limit the lives of children. Palliative care represents a branch of care with a distinct, family-centered\\u000a approach. Symptoms can be far-ranging and include grief, anxiety, and existential concerns, in addition to somatic complaints,\\u000a such as pain, dyspnea, and nausea. Therefore, a multidisciplinary approach best benefi ts the family and patient. Despite\\u000a the varied underlying diagnoses,
Norbert J. Weidner; Mark J. Meyer
Principles of upstream palliative care can guide the planning, programs, and services associated with aging in place in assisted living residences (ALRs). Frail older adults who do not need a nursing home level of care are choosing to live—and die—in ALRs. This article describes the context of assisted living, resident characteristics, key indicators of palliative care, barriers to end-of-life care,
Ethel L Mitty
[Development of a cooperative system for palliative care among a hospice ward, general ward, geriatric health services facility, and home in Japan Baptist Hospital-provision of home-based care by hospice physicians].
In November 2009, a home hospice palliative care clinic(clinic)was opened in addition to a hospice ward, general ward, and geriatric health services facility at our hospital. This marked the initiation of a health care system able to provide the palliative care desired by patients and families. We studied the characteristics and hospitalization status of 514 patients with cancer who died at the hospice ward, general ward, or their homes from November 2009 through December 2011. Overall, 373 patients died at the hospice ward, 11 at the general ward, and 130 at home. Hospice physicians participated in the home care of 20 patients. Hospice physicians provide home-based care in cooperation with clinic physicians, facilitating the palliative care of patients who initially do not have a place to receive terminal care and the prompt discharge of patients who want to live at home. PMID:23268903
Yamagiwa, Tetsuya; Nakayama, Shinya; Shiotani, Tomohiro; Fukuda, Akiko; Ito, Satoko; Watanabe, Go; Yamaoka, Yoshio
At a time of increasing interest in palliative care in pediat- rics, pediatric oncology programs may be failing to deliver adequate palliation to children with cancer. In a recent study, parents of children who died on a pediatric oncology service reported that despite treatment at the end of life, their children's suffering was not adequately relieved and that parents were
Michael B. Harris
Paediatric palliative care is a holistic approach aimed at addressing the complex issues related to the care of children and families facing chronic life limiting illnesses. The needs of children are unique and often quite different from those of adults receiving palliative care. This review article outlines some of the salient features of paediatric palliative care which are relevant to all professionals caring for children with life limiting illnesses in their practice.
Muckaden, Maryann; Dighe, Manjiri; Balaji, PD; Dhiliwal, Sunil; Tilve, Prajakta; Jadhav, Sunita; Goswami, Savita
Challenges in societal demographics, finances, and human suffering are pushing us towards a new paradigm in health care delivery. The palliative care paradigm is a necessary complement to existing acute care and chronic care paradigms. Palliative care does not replace prior paradigms; instead, it adds value and provides a shift in focus when appropriate. Baylor University Medical Center has all of the components needed for an effective palliative care program, including expertise in palliative medicine, pain management, ethics, geriatrics, oncology, other medical specialties, nursing, social work, and pastoral care. The palliative care consultation service will enhance patient care and improve financial performance in patients with serious life-limiting illnesses.
Currently, major deficiencies exist in undergraduate nursing education for end-of-life care. Nursing students report feeling anxious and unprepared to be with patients who are dying. A Palliative Care Companion program that allows undergraduate nursing students to volunteer to spend time with patients at the end of life provides a unique educational opportunity to enhance students' knowledge and attitudes toward palliative care. In addition, the program offers a service to patients and families by providing a nonmedical, caring human presence to patients who may be alone, lonely, or bored. In accordance with tenets of Experiential Learning Theory, a Palliative Care Companion program was developed and revised using feedback from initial participants and facilitators. Data collected during the first two semesters indicated increased knowledge of palliative care, improved attitudes about care at the end of life, and fewer concerns about providing nursing care to dying patients, when participating students were compared to their undergraduate peers. PMID:15862050
Kwekkeboom, Kristine L; Vahl, Cheryl; Eland, Joann
Initial observations regarding the use of music therapy at one hospital in the palliative care of patients with advanced malignant disease are presented. In the hands of a trained music therapist, music has proven to be a potent tool for improving the quality of life. The diversity of its potential is particularly suited to the deversity of the challenges - physical, psychosocial and spiritual - that these patients present. Images FIG. 1
Munro, S.; Mount, B.
Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten. PMID:21419263
Huffman, Joan L
This paper describes a social work service to critically ill non-hospitalized cancer patients based upon Heimler's theory and method of Human Social Functioning. Despite severe constraints arising from physical deterioration and emotional distress of the patients and certain aspects of the treatment setting, efforts were made to validate the effectiveness of the service through pre= and post-intervention measures of patients'
Amy S. Badura; Gerald L. Stone
The concept of palliative wound care is in its infancy, with relevant literature emerging in the 1980s. Palliative wound care has evolved over time as new research and practice initiatives continue to explore its usefulness. We applied Rodgers' evolutionary concept analysis to a conceptual exploration of palliative wound care. The findings of this analysis identified reoccurring themes that were grouped into the concept's antecedents, attributes, and consequences. We found that palliative wound care is a holistic integrated approach to care that addresses symptom management and psychosocial well-being, is multidisciplinary, is driven by patient/family goals, and is integrated into wound healing principles and everyday practice. The integration of palliative wound care into the continuum of wound care, not just at the end of life, is the logical conclusion. PMID:21076264
Emmons, Kevin R; Lachman, Vicki D
The aim of this study was to present elements for debating guidelines on palliative care programs for cancer. A literature survey searched various databases (MEDLINE, LILACS, and Cochrane Library), homepages of palliative care organizations, publications by renowned authors in this area, reference textbooks on the subject, relevant articles cited by these books, and the thesis/dissertation database of CAPES (the Brazilian Coordinating Body for Training University Level Personnel). The data were grouped into four thematic categories: symptomatic palliation, organization of services, psychosocial characteristics, and spiritual characteristics. The article then proceeds to discuss cancer as a public health problem and its impact on individuals, the concept of palliative care and its context in health care, program models and their guidelines, death and dying, and care and caregivers. The study concludes by discussing the challenges for the Brazilian National Health System in structuring end-of-life programs as a consequence of the population's aging and increasing cancer incidence. PMID:16951877
da Silva, Ronaldo Corrêa Ferreira; Hortale, Virginia Alonso
Caring is an attribute of palliative nursing that is assumed to be fundamental. However, as the sophistication of palliative care increases, the liberal art of caring has become submerged under the weight of medical and pharmacological sciences. The nursing profession defends caring as the essence of its practice yet caring work in the palliative environment receives relatively little attention in research or in literature generally. Although it is accepted that nurses' caring work sometimes involves intimate and private aspects of patient care, the value and positive outcomes of caring should not remain hidden. Palliative nurses have special but tentative opportunities to prove the value of caring and define the complexity of caring work. This article argues that nurses need to reclaim the caring ethic and demonstrate its worth. PMID:11951402
Catastrophic mass casualty events, such as pandemic flu outbreaks or large-scale terrorism-related events, could yield thousands of victims whose needs would overwhelm local and regional healthcare systems, personnel, and resources. Such conditions will require deploying scarce resources in a manner that is different from the more common single-event disaster. This article introduces the topic of palliative care during a mass casualty event and reviews the major findings for a federally funded planning guide that examined palliative care issues associated with providing medical care under circumstances where resources are scarce. We focus on the role of palliative care in the support of individuals not expected to survive and offer recommendations of specific actions for a coordinated disaster response plan. Semistructured telephone discussions with disaster management experts and a group meeting of experts identified issues, roles, responsibilities, procedures, and resources that offer the benefits of integrating palliative care into disaster planning and response. The investigations identified 5 domains of concern, along with guidance: (1) the role of palliative care in a mass casualty event with resulting scarce resources; (2) the triage and ensuing treatment decisions for those "likely to die"; (3) the critical palliative care services to provide, along with the personnel and settings; (4) the pragmatic plans needed for ensuring training, supplies, and organizational or jurisdictional arrangements; and (5) unusual issues affecting palliative care under mass casualty event scenarios. Palliative care minimizes the suffering of those who die, ensures comfort, addresses their needs, and may also free up resources to optimize survival of others. Planning to provide palliative care during mass casualty events should be part of the current state and local disaster planning/training guidelines, protocols, and activities. PMID:19635004
Matzo, Marianne; Wilkinson, Anne; Lynn, Joanne; Gatto, Maria; Phillips, Sally
Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques allow the diversity of objectives in treating patients such as reducing anxiety and stress, relaxation, pain control, reducing confusion spiritual, emotional expression, experience, self-awareness, encourage creative expression, causing mood swings - emotional, cognitive and behavioral, inducing the patient's imagination, enabling patient's chronological classification of life experiences, and the elaboration of unresolved pain, sorrow or errors. Adequate selection and use of musical techniques in palliative care in the service of achieving the best possible quality of life for patients at the end of life. PMID:22994012
Skrbina, Dijana; Simunovi?, Dubravka; Santek, Vjerocka; Njegovan-Zvonarevi?, Tatjana
Implementing a philosophy of care which emphasises quality of life, holism, futility and family involvement and sees death as a natural end of life is an enormous challenge for nurses in current complex healthcare environments. This article explores the practice-based reality of using the palliative approach in multiple settings and the challenges in such care. PMID:19475794
In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or
Barry M. Kinzbrunner
Palliative care is now a core component of pediatric care for children and families who are confronting serious illness with a low likelihood of survival. Pediatric surgeons, in partnership with pediatric palliative care teams, can play a pivotal role in assuring that these patients receive the highest possible quality of care. This article outlines a variety of definitions and conceptual frameworks, describes decision-making strategies and communication techniques, addresses issues of interdisciplinary collaboration and personal self-awareness, and illustrates these points through a series of case vignettes, all of which can help the pediatric surgeon perform the core tasks of pediatric palliative care. PMID:23870210
Feudtner, Chris; Blinman, Thane A
Over the past two decades, paediatric palliative care has emerged as both a primary approach and as its own medical subspecialty, the overall aim of which is to ease suffering for children with life-threatening illness and their families through a concurrent model of care. However, most discussions have been focused on the transition to palliative care when no realistic hope for cure exists. We believe that, because the course of cancer is so unpredictable, this idea is misleading. Indeed, palliative care is increasingly being recognized as being about not just how to cope with the process of dying, but also about how to engage in living when faced with a life-threatening illness. This article will examine our current understanding of several areas of palliative care, with the ultimate message that palliative care is simply a novel term for the total care of a child and family, an approach that should be applied consistently and concurrently regardless of disease status. By improving familiarity with palliative care and building relationships with palliative care specialists, the paediatric oncology clinician will ensure that the best care possible for children and families is provided, regardless of outcome. PMID:23337915
Waldman, Elisha; Wolfe, Joanne
Patients with advanced, irreversible disease need palliative care in both developing and developed countries. The philosophy of palliative care is universal. Despite differences among individuals and cultural groups, basic needs, cares, and wants are common to human-kind. For truly effective palliative care, cultural subtleties and nuances must be considered. Challenging assumptions based on one's own culture is essential to the development of knowledge and insight into others. Keeping open minds about what is new or different within different cultures where we provide care can extend and intensify quality of care. This paper reflects the author's experience as a New Zealand Nurse and of her visit to the Pain and Palliative Care Clinic in Calicut, India. This was a journey that crossed cultural boundaries and it illustrates the importance of building bridges to care. PMID:15022965
Many older individuals living in long-term care facilities or in the community develop illnesses for which palliative care is appropriate. There are different approaches for providing such care within institutions, each with its own positive and negative attributes. Whichever formula or combinations of design are chosen, it is important to define the parameters by which patients are admitted to palliative care programs to make sure that their needs are met and that the program is as effective as possible.
Gordon, Michael; Gutman, Ed
Little attention has been accorded to the terminal course and end-of-life care of patients after dialysis discontinuation. This prospective cohort observational study involves six dialysis clinics in the United States and two clinics in Canada. Data were collected on 131 patients who were undergoing maintenance dialysis and died after treatment discontinuation. Seventy-nine of the patients (60%) were prospectively studied until their deaths. Caregivers and families provided information about the symptoms and treatment provided in the final 24 hours of life, and structured interviews were conducted at the time of stopping dialysis with patients and families. The patient population was primarily white (73%), elderly (70 +/- 1.2 years), and diabetic (46%). Three quarters of the subjects had between three and seven comorbid conditions. Pain and agitation were the most common symptoms during the last day of life. Terminal treatment was generally considered to be satisfactory, and most people had good deaths. Although dialysis prolongs life, the integration of palliative medicine into dialysis programs offers opportunities to improve the quality of end-of-life care, especially for those patients who elect to stop treatment. Recommendations include making advance care planning an expectation at all clinics and using quality-of-dying measures to establish benchmarks for the provision of terminal care. PMID:10873883
Cohen, L M; Germain, M; Poppel, D M; Woods, A; Kjellstrand, C M
Palliative Care (PC) is still a relatively new concept in the Middle East (ME). It was first introduced in Saudi Arabia in 1992 and only recently in countries such as Qatar, Bahrain, and the UAE. Although the majority of Middle-Eastern countries, including Palestine, Iraq, Oman and Lebanon are in the capacity building phase, others such as Saudi and Jordan already have localized provision. In the absence of any of the ME countries approaching integration with the mainstream service providers, Saudi Arabia and Jordan are currently setting examples of achievement in the field. There are still countries with little or no known Palliative Care activity (Yemen and Syria). Political issues, scarcity of resources, and lack of education and awareness seem to be the common factors restricting the progress of this field in most countries. In order to improve the suboptimal PC services in the ME, emphasis should be directed toward providing formal education to professionals and raising awareness of the public. It is also necessary to put all differences aside and develop cross-border collaborations, whether through third party organizations such as the Middle East Cancer Consortium (MECC) or otherwise. This review compiles the available literature on the history and progress of the field of PC in most ME countries, while pointing out the major obstacles encountered by the active parties of each country. PMID:22495789
Zeinah, Ghaith F Abu; Al-Kindi, Sadeer G; Hassan, Azza Adel
|Context: Growing concern exists among health professionals over the dilemma of providing necessary health care for Canada's aging population. Hospice palliative services are an essential need in both urban and rural settings. Rural communities, in particular, are vulnerable to receiving inadequate services due to their geographic isolation.…
Robinson, Carole A.; Pesut, Barbara; Bottorff, Joan L.
Palliative care and geriatrics share many ideas and concepts: both intend to imporve quality of life, both focus on more than the physical domain, and both work in a multiprofessional team. More and more the elderly person attracts notice by palliative care. In multimorbid geriatric patients intentions to cure and to care go alongside sometimes over years in a fragile equilibrium and with uncertain prognosis. Therefore principals of palliative care and geriatrics meet at its best in these patients: improving function plays a major role in any symptom management; how to deal with cognitively impaired patients can be learned from geriatrics; various approaches from curative, palliative and rehabilitative often go hand in hand; decision making is a permanent and sophisticated task in all patients due to prognosis and multimorbidity. PMID:22334203
This article reflects a project to create, refine, and use a palliative care specific spiritual assessment, with the intent to implement its use for both an inpatient Palliative Consult Service (PCS) and a Spiritual Health Service (SHS) team. Extensive meetings with these services to confirm a shared understanding of the use of this spiritual assessment to facilitate communication with PCS through consistent language about the patient's story, suffering, spirit, and sense-making. Following a pilot phase of using this palliative care spiritual assessment, five presentations were shared with the SHS team to explore using this assessment. Although the SHS team decided not to use its content, these presentations spurred dialogue toward what was to become a SHS standardized documentation process, eventually called data, intervention, outcome, plan (DIOP). PMID:23977782
For most clinicians and patients, the discussion of palliative care is a difficult topic. It is complicated by both the clinician's and patient's belief systems, which are frequently heavily influenced by cultural and religious upbringing. This article discusses the impact of some of those differences on attitudes toward end of life decisions. Several different religions and cultures have been evaluated for their impact on perceptions of palliative care and the authors will share some examples.
Steinberg, Steven M
\\u000a Palliative care has primarily addressed the needs of patients with cancer during their last days of life. Indeed, in one country,\\u000a it is mandated that formal hospice programs can only enroll patients who are expected to die within 6 months. The model wherein\\u000a palliative care works only with cancer patients and their families towards the end of the patients’ existence
Although many children with cancer can be cured, approximately 25 % will die of their disease. These deaths are usually anticipated and preceded by a period of palliative care focused on the end-of-life, usually referred to as the palliative phase. The PRESENCE-study was aimed at a better understanding of parenting, parental care-giving and decision-making and of the professional caregivers’ role
M. C. Kars
Background: Stroke is a leading cause of death; between 20% and 30% of people die within 30 days of a stroke. High-quality palliative and end-of-life care are advocated for patients not expected to recover from stroke. Aim: To explore the perspectives of health professionals regarding the provision of palliative and end-of-life care in UK stroke units. Design and setting: Qualitative focus groups and individual interviews were held with 66 health professionals working in UK specialist stroke units. Data were analysed thematically. Results: Three themes emerged from the data. Palliative care was recognised as an important component of stroke care; however, there was uncertainty when initiating transitions to palliative care in stroke, and issues were identified with the integration of acute stroke care and palliative care. Conclusions: The findings provide encouraging evidence that palliative and end-of-life care have been adopted as key components of specialist stroke care in UK stroke units. However, many patients stand to benefit from earlier identification of palliative care need and a consideration of quality-of-life approaches during active care. Encouraging collaboration and partnership when working with specialist palliative care services would optimise palliative care service delivery and may provide patients and their families with greater opportunities for documenting and achieving preferences for care and achieving a better quality of death. PMID:23579262
Gardiner, Clare; Harrison, Madeleine; Ryan, Tony; Jones, Amanda
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital- and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases. PMID:24167168
It is important to identify prognostic and predictive factors concerning both life expectancy and quality of life in palliative care patients to facilitate ethical, clinical, and organizational decisions, but also to use resources in the best possible way. The authors reviewed the literature to identify the major factors that can predict survival of patients with solid tumors. They found only a few prospective assessments of prognostic factors. Clinical prognostic/predictors of survival based on physician's and/or nurse's judgment, performance status, dyspnea at rest, anorexia, dysphagia, or delirium are all considered to be of primary importance. Despite several contrasting findings, it is generally agreed that the type and site of the primary tumor and metastasis, psychosocial factors, and quality of life should be considered secondary to the organic effects in the final stages of life. Leukocytosis, lymphocytopenia, and elevated C-reactive protein are all reported to have prognostic significance, and low serum albumin and high lactate dehydrogenase levels must also be taken into consideration. Cancer 2009;115(13 suppl):3128-34. (c) 2009 American Cancer Society. PMID:19544541
Ripamonti, Carla Ida; Farina, Gabriella; Garassino, Marina Chiara
Abstract Background Cancer causes significant symptom burden and diminished quality of life. Despite the expansion of supportive and palliative care services (SPCS), little is known about rates of utilization and barriers to access to these services among oncology outpatients. Methods We performed a cross-sectional survey in three outpatient medical oncology clinics. Patients with a diagnosis of breast, lung, or gastrointestinal (GI) cancer and a Karnofsky score of ?60 were included. Patients reported their use of SPCS and any perceived barriers. Multivariable logistic regression was used to identify factors associated with SPCS use. Results Among 313 participants, (50.5%) had not used SPCS since cancer diagnosis. The most common services used were nutrition (26.5%), psychiatric/psychological counseling (29.7%), and physical therapy (15.1%). Pain/palliative care and cancer rehabilitation consultations were used by 8.5% and 4.1% of participants, respectively. In multivariate analysis, graduate education was associated with greater SPCS use (adjusted odds ratio [AOR] 2.14, 95% confidence interval [CI] 1.08-4.26) compared with those with high school or less, whereas having lung cancer was associated with less SPCS use (AOR 0.48, 95% CI 0.24-0.96) when compared with those having breast cancer. The biggest reported barriers to using SPCS were a lack of awareness (22.4%) and lack of physician referral (23%). Conclusions Approximately half of these patients had not accessed SPCS since cancer diagnosis and cite lack of awareness and physician nonreferral as barriers. Further research is needed to understand patients' needs and beliefs regarding SPCS, and how to integrate SPCS into conventional treatments to improve cancer care.
Kumar, Pallavi; Casarett, David; Corcoran, Amy; Desai, Krupali; Li, Qing; Chen, Jinbo; Langer, Corey
In-depth interviews and discussions were held with 40 different professionals in South East England involved in managing palliative care for children with cancer in the community. Participants included paediatric oncologists and outreach nurse specialists in tertiary centres, paediatricians in shared care units, children's community nurses, general practitioners, social workers and child psychologists. The research examined palliative care services available in
Liz Spencer; Lindsey Battye
OBJECTIVE: To describe the utility and acceptability to general practitioners and palliative care staff of case conferences in palliative care.\\u000aMETHOD: Research focussed on case conferences conducted between GPs and staff of three specialist palliative care units (in an inner urban, outer metropolitan and regional setting), at the time of referral of patients to the service. Telephone interviews were conducted
Geoffrey Mitchell; Margaret Cherry; Rosemary Kennedy; Karen Weeden; Letty Burridge; Alexandra Clavarino; Peter ORourke; Chris Del Mar
Developing accountable and appropriate care services depends on listening to the views of service users. This nurse-led, qualitative study explored 10 palliative care patients' views of their care in hospital and at home using non-standard interviews. A total of 10 categories emerged, some of which are not reflected well in extant literature. However, some smaller studies show comparable results, which confirms the validity of these findings. These findings can inform the planning of services and are repeatable and generalizable. Implications for nursing and planning for palliative care are discussed. PMID:19060805
Conner, Alison; Allport, Sarah; Dixon, Julie; Somerville, Ann-Marie
The role of palliative care in the medical management of malignant mesothelioma is multifaceted, requiring proficiency in multiple disciplines. Pain management is a key aspect of this care. The most common sources of pain are postthoracotomy syndrome, chemotherapy-induced peripheral neuropathy, involvement of the intercostal nerves by tumor invading the chest wall, and dyspnea. The palliative care provider also must be prepared to recognize and treat psychological disorders, to identify other social and spiritual sources of distress, including anxiety and depression, and to provide or arrange for counseling to patient and family for advance care planning, as well as grief and bereavement. PMID:19822289
Abrahm, Janet L
Palliative care focuses on the physical, spiritual, psychological, and social care from diagnosis to cure or death of a potentially life-threatening illness. When cure is not attainable and end of life approaches, the intensity of palliative care is enhanced to deliver the highest quality care experience. The emergency department (ED) frequently cares for patients and families during the end-of-life phase of the palliative care continuum. The intersection between palliative care and emergency care continues to be more clearly defined. Currently, there is a mounting body of evidence to guide the most effective strategies for improving palliative and end-of-life care in the ED. In a workgroup session at the 2009 Agency for Healthcare Research and Quality (AHRQ)/American College of Emergency Physicians (ACEP) conference “Improving the Quality and Efficiency of Emergency Care Across the Continuum: A Systems Approach,” four key research questions arose: 1) which patients are in greatest need of palliative care services in the ED, 2) what is the optimal role of emergency clinicians in caring for patients along a chronic trajectory of illness, 3) how does the integration and initiation of palliative care training and services in the ED setting affect health care utilization, and 4) what are the educational priorities for emergency clinical providers in the domain of palliative care? Workgroup leaders suggest that these four key questions may be answered by strengthening the evidence using six categories of inquiry: descriptive, attitudinal, screening, outcomes, resource allocation, and education of clinicians.
Quest, Tammie E.; Asplin, Brent R.; Cairns, Charles B.; Hwang, Ula; Pines, Jesse M.
Palliative care nursing practice can be enhanced if the clinical judgements made in applying palliative care philosophy to individual situations are critically examined and challenged. A model of reflection developed specifically for children's palliative care practice is illustrated here using a critical incident in which the parents of a child with complex disabilities were helped to reduce their caring role and accept increased support. As a result of the structured reflection, the importance of assessing for signs of stress in parents and the wider family was recognised. Additionally, the need for more research specific to the needs of families with more than one child with life-limiting illness was identified as a mechanism for improving the quality of care delivered. PMID:17472196
Maguire, Ann; Price, Jayne
no1 Abstract. This paper presents the main ideas underlying the work which is being developed at the Spanish research project PalliaSys, in which both Multi-Agent Systems and Information and Communi- cation Technologies are being used to improve the management of the clinical data of palliative patients. A prototype of the system will be tested at the Palliative Care Unit of
Antonio Moreno; Aida Valls; David Ria
Abstract Background: San Diego Hospice and the Institute for Palliative Medicine created one of the earliest perinatal palliative care programs in the country. Only four studies have reported outcomes for pregnant women referred to perinatal palliative care services for potentially lethal prenatal diagnoses. Objectives: To learn: (1) who is referred for perinatal palliative care at San Diego Hospice; (2) what happens after referral to perinatal palliative care; and (3) what happens after delivery for this population. Design: This was an exploratory retrospective electronic chart review of all patients referred to a home perinatal palliative program. Results: Sixty-six women were referred to the San Diego Hospice and the Institute for Palliative Care home perinatal palliative care program between October 2006 and August 2012. Mean age was 31 years. The majority of women were Hispanic, Christian/Catholic, married, with full prenatal care, and previous children. Average gestational age at referral was 27 (18-39] weeks. Thirty-two cases were referred for Trisomy 13, Trisomy 18, or anencephaly. Palliative care services were given over a mean 45 (0-132) days and 3 (0-12) visits prior to delivery. Most women completed a birth plan prior to delivery, chose palliative treatment only, and made final arrangements with the palliative team. Forty-one deliveries resulted in a liveborn infant. Twelve liveborn infants survived past 72 hours and were admitted to pediatric hospice care. Conclusions: One-third of women met with the palliative care team only once or twice prior to delivery, indicating a need for earlier referral to provide more comprehensive palliative care. PMID:24003992
Leong Marc-Aurele, Krishelle; Nelesen, Rick
Background The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification. Aim To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death. Design and setting Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed. Method Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed. Results In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital. Conclusion Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.
Harrison, Nadine; Cavers, Debbie; Campbell, Christine; Murray, Scott A
Aim: The aim of this preliminary study was to evaluate the feasibility of conducting an effectiveness trial of early access to palliative care services for people with lung cancer through use of an integrated outpatient model. Methods: Newly diagnosed patients with lung cancer receiving palliative-intent treatment or best supportive care treatment were recruited over a 5-month period from one out-patient clinic in Scotland. Patients were offered a clinical review appointment with a palliative medicine consultant at two time points: baseline and 12 weeks later. Prior to each appointment patients completed three outcome measures addressing symptom severity, wellbeing, and health-care needs. One-to-one interviews were also conducted to explore patients' experiences of being involved in the study. Results: Three patients participated in the study. The main reasons for low recruitment were patients' deteriorating condition and unwillingness to undertake extra hospital visits. However, qualitative data indicated that the participants found this extra layer of supportive care useful in identifying and managing their needs, as well as enabling future planning. Conclusion: Further testing is needed to ascertain the feasibility of conducting a trial of integrating early access to palliative care services into routine practice for people with lung cancer. PMID:24071834
Johnston, Bridget; Buchanan, Deans; Papadopoulou, Constantina; Sandeman, Gillian; Lord, Hannah
As the hospice care setting becomes more racially and ethnically diverse, attending to the different conditions and needs of various groups is essential to providing optimal care. African Americans make up only a small percentage of hospice users in the United States. This article highlights barriers associated with the underenrollment of African Americans into hospice and palliative care programs. A thorough analysis of the literature was conducted to define hospice and palliative care and assess circumstances that impact the use of hospice services by African Americans. Many African Americans are not choosing hospice care because of cultural issues or knowledge deficits, whether through lack of communication or low literacy. Healthcare providers can begin by familiarizing themselves with hospice organizations and developing and putting into practice strategies to communicate with and educate patients and families about hospice care in a culturally sensitive manner. PMID:23899976
Patients with ESRD experience complex and costly care that does not always meet their needs. Palliative care, which focuses on improving quality of life and relieving suffering for patients with serious illnesses, could address a large unmet need among patients with ESRD. Strengthening palliative care is a top policy priority for health reform efforts based on strong evidence that palliative care improves value. This commentary outlines palliative care policies for patients with ESRD and is directed at policymakers, dialysis providers, nephrology professional societies, accreditation organizations, and funding agencies who play a key role in the delivery and determination of quality of ESRD care. Herein we suggest policies to promote palliative care for patients with ESRD by addressing key barriers, including the lack of access to palliative care, lack of capacity to deliver palliative care, and a limited evidence base. We also provide examples of how these policies could be implemented within the existing ESRD care infrastructure. PMID:23744000
Kurella Tamura, Manjula; Meier, Diane E
Control of symptoms in cancer patients on a home care program was studied, to identify problems related to caring for these patients at home. The study was based on independent physician assessments of patients' medical charts, as well as interviews with the home care providers. The results showed problems in control of pain, nausea and constipation; the causes were less than optimal care and non-compliance. There is an urgent need to improve palliative care to home care patients and to provide better, more frequent reassessment of patients with uncontrolled symptoms.
Kirshner, Bram; Hall, Mary C.; Gilpin, Audrey; Day, Nancy
Timely and important studies are reviewed and commentaries provided by leading palliative care clinicians. Symptoms, interventions, and treatment-related adverse events addressed in this issue are computerized symptom management; anticholinergic agents in lung disease; neuropathic pain and morphine effectiveness; morphine dosing; inflammatory cytokines and pain; oral ghrelin-mimetics and sarcopenia; and opioid-induced bowel dysfunction. PMID:19492222
Abernethy, Amy P
Clinical trials for supportive and palliative care explore ways to improve the comfort and quality of life of cancer patients and cancer survivors, such as studying ways to help people prevent or manage nausea, pain, sleep disorders, depression, or other effects from cancer or its treatment.
Supportive and palliative care research tests interventions to improve the quality of life of patients and their families when facing problems associated with a life-threatening illness. Interventions are aimed at the prevention and relief of suffering by means of early identification, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems.
Our objective in this study was to summarize the relevant knowledge on depression in palliative care and to provide a framework for clinical, scientific and educational efforts at improving its management. The Research Steering Committee (RSC) of the European Association of Palliative Care (EAPC) established an Expert Working Group (EWG) to address the issue of depression in palliative care. Each
Friedrich Stiefel; Maria Die Trill; Alexandre Berney; Juan Olarte; Darius Razavi
Little research has been carried out to determine the attitudes of palliative care professionals to euthanasia. This research aimed to find out how Flemish palliative care nurses and physicians think about euthanasia. An anonymous questionnaire was sent to all physicians (147) and nurses (589) employed in palliative care teams and institutions in Flanders (Belgium). The questionnaire contained a demographic part,
Bert Broeckaert; Joris Gielen; Trudie van Iersel; Stef Van den Branden
The primary aim of this study was to explore the changes in medical\\/nursing care in patients who transferred from a palliative care team (PCT) to a palliative care unit (PCU) in the same hospital, and to explore the reasons why new or modified interventions were required. This was a retrospective study of 50 consecutive patients who were transferred from PCT
Tatsuya Morita; Chizuru Imura; Koji Fujimoto; Hideki Shishido; Yo Tei; Satoshi Inoue
Trauma remains a leading cause of morbidity and mortality in the United States. Despite the aggressive and heroic nature of trauma care, including trauma surgery, 10% to 20% of patients admitted to trauma intensive care units die. As the population continues to age, it is predicted that by 2050, approximately 40% of those experiencing traumatic injury will be older than 65 years. For multiple reasons, people in this age group who experience trauma are at greater risk for death. Palliative care is the specialty of health care that provides care for patients with serious, life-threatening, or life-limiting illness or injury, regardless of the stage of disease or treatment. The goal of palliative care is to reduce or alleviate suffering through expert pain and symptom management, as well as assistance with decision making. The integration of palliative and trauma care can assist and support patients and families through stressful, often life-changing times, regardless of the final outcome. PMID:22668994
Abstract Background: Palliative care is increasingly viewed as a care option that should not only be offered to patients very near the end of life. An important question is whether increased use of palliative care soon after a patient's referral will improve patient functioning, an aspect of quality of life. Objectives: The aim of this study was to determine if increased use of palliative care is associated with increased patient functioning. Methods: The Carolinas Palliative Care Database Consortium collects palliative care encounter data from a variety of providers, settings, and patients, and it measures patient functioning, allowing us to test the hypothesis that increased use of palliative care early in a patient's palliative care experience will improve patient functioning. Results: After controlling for other factors that could explain patient functioning, we find that each additional palliative care visit during the first month of follow-up increases patient functioning measured using an area under the curve (AUC) approach (0.008 per visit, p=0.01). However, patient functioning as measured at the initial visit is a far stronger predictor of subsequent functioning (0.52, p<0.001) than are additional palliative care visits. Conclusions: Increased use of palliative care was associated with improved patient functioning. This held true at very low as well as very high levels of initial functioning. The strongest predictor of subsequent patient functioning is their initial status. Accounting for patient-specific differences to precisely determine the impact of palliative care on patient functioning is difficult. PMID:24020918
Taylor, Donald H; Bull, Janet; Zhong, Xiaoyin; Samsa, Greg; Abernethy, Amy P
Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms.
Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert
Background In larger parts of the Middle East palliative care is still misunderstood among health professionals, cancer patients and the public at large. One reason to that is because the term does not obviously communicate the intent of this clinical discipline, which is lending better quality of life while combating cancer. Further, culture, tradition and religion have contributed to this misgiving and confusion especially at the terminal stage of the disease. Methods The Middle East Cancer Consortium jointly with the American Society of Clinical Oncology, the American Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle East to provide updated training to physicians, nurses, social workers and psychologists from throughout the region with basic concepts of palliative care and pain managements in adults and children cancers. Results During the past 6 years hundreds of professionals took part in these educational and training activities, thereby creating the core of trained caregivers who start to make the change in their individual countries. Conclusions The outcome of consecutive training activities can overcome geopolitical instabilities, and yield a genuine change in approach of both regulators, medical administrators, medical staff and the public; as to the important contribution of palliative care services to the welfare of the patient and his/her family.
Silbermann, M.; Arnaout, M.; Daher, M.; Nestoros, S.; Pitsillides, B.; Charalambous, H.; Gultekin, M.; Fahmi, R.; Mostafa, K.A.H.; Khleif, A.D.; Manasrah, N.; Oberman, A.
Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units. PMID:22990428
Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert
Background To determine the international recommendations and current practices for the treatment and prevention of palliative emergencies. The primary goal of the study was to gather information from experts on their nationally practised concepts. Methods One hundred and fifty self-report surveys were distributed by email to selected leading experts (palliative and emergency medical care) in Europe, North and South America, Africa, Asia, and Australia. An expert in this context was defined as an author of an article that was ranked by three reviewers as relevant to outpatient palliative and emergency medical . Results The total response rate was 61% (n?=?92 experts). Survey responses were obtained from 35 different countries. The following standards in the treatment of palliative emergencies were recommended: (1) early integration of “Palliative Care Teams” (PCTs) and basic outpatient palliative care systems, (2) end-of-life discussions, (3) defined emergency medical documents, drug boxes, and “Do not attempt resuscitation” orders and (4) emergency medical training (physicians and paramedics). Conclusions This study detected structurally and nationally differences in outpatient palliative care regarding the treatment of palliative emergencies. Accordingly, these differences should be discussed and adapted to the respective specifications of individual single countries. A single established outpatient palliative emergency medical care concept may be the basis for an overall out-of-hospital palliative care system.
\\u000a Identifying late effects of treatment and integrating palliative care when appropriate, are increasingly recognized as important\\u000a elements of childhood tumor management. Patients with CNS tumors are at high risk for mortality, and survivors have high morbidity\\u000a rates related to the late effects of treatment. While intensified therapy has improved survival in patients with pediatric\\u000a brain tumors (Packer et al. 1999,
Denah Taggart; Robert Goldsby; Anuradha Banerjee
The poor prognosis of amyotrophic lateral sclerosis (ALS) makes palliative care a challenge for the neurologist. Most disabilities\\u000a associated with progressive disease can be ameliorated by symptomatic treatment. Prognosis and treatment options should be\\u000a openly discussed with the patient and his\\/her relatives. Nutritional deficiency due to pronounced dysphagia can be efficiently\\u000a relieved by a percutaneous enterogastrostomy. Respiratory insufficiency can be
Gian Domenico Borasio; Raymond Voltz
Clinical trials for supportive and palliative care explore ways to improve the comfort and quality of life of cancer patients and cancer survivors. These trials study ways to help people who are experiencing symptoms related to cancer and its treatment, such as nausea, pain, weight loss, sleep disorders, and depression. Some of these trials also look at nutrition, group therapy, and other interventions to help cancer patients and survivors.
This article attempts to provide a framework for reflection on the relationships between 2 close specialties, such as geriatrics and palliative care. In medicine today, with the progressive ageing of the population, 80% of deaths occur at a very advanced age, and a high percentage of these are potentially likely to receive palliative care in their final stages. The reflections offered in this presentation are made from a perspective of someone who has always worked in the geriatrics field. Throughout this article, some the common points in the historic evolution of both specialities are made and discussed. The inter-relationships and common ground in other fields may be, their form of understanding medical care, clinical objectives, doctrinal bases, the work methodology, or the overlapping of some elements of training. Several aspects of where they differ on these same points are also discussed. It is concluded with a call for collaboration between the specialists of both fields, as well as in the need to demand that the health administrations introduce larger palliative teams in all hospitals in the country. PMID:23159775
Ribera Casado, José Manuel
The purpose of the above-named conference was five-fold: (1) expand the findings from the institute of Medicine (IOM) report, improving Palliative Care for Cancer, to hospice and palliative care professionals; (2) present effective models of palliative ca...
S. K. Roger
Aboriginal Canadians experience a disproportionate burden of ill-health and have endured a history of racism in accessing and using health care. Meanwhile, this population is rapidly growing, resulting in an urgent need to facilitate better quality of living and dying in many ways, including through enhancing (cultural) access to palliative care. In this article, we report the findings from a qualitative case study undertaken in rural British Columbia, Canada through exploring the perceptions of Aboriginal palliative care in a region identified as lacking in formal palliative care services and having only a limited Aboriginal population. Using interview data collected from 31 formal and informal palliative care providers (May-September 2008), we thematically explore not only the existing challenges and contradictions associated with the prioritisation and provision of Aboriginal palliative care in the region in terms of (in)visibility but also identify the elements necessary to enhance such care in the future. The implications for service providers in rural regions are such that consideration of the presence of small, and not always 'visible', populations is necessary; while rural care providers are known for their resilience and resourcefulness, increased opportunities for meaningful two-way knowledge exchange with peers and consultation with experts cannot be overlooked. Doing so will serve to enhance culturally accessible palliative care in the region in general and for Aboriginal peoples specifically. This analysis thus contributes to a substantial gap in the palliative care literature concerning service providers' perceptions surrounding Aboriginal palliative care as well as Aboriginal peoples' experiences with receiving such care. Given the growing Aboriginal population and continued health inequities, this study serves to not only increase awareness but also create better living and dying conditions in small but incremental ways. PMID:20500225
Castleden, Heather; Crooks, Valorie A; Hanlon, Neil; Schuurman, Nadine
Stroke is the leading cause of disability and one of the most common causes of death worldwide. Outside the setting of acute management, secondary prevention and stroke rehabilitation, little has been written to address the ongoing symptomatic and palliative needs of these patients and their families. In this literature review, we look beyond secondary prevention with the aim of providing evidence-informed management guidelines for the myriad and often under-recognized symptomatic and palliative care needs of stroke survivors. Some of the most common and disabling post-stroke symptoms that are reviewed here include central post-stroke pain, hemiplegic shoulder pain, painful spasticity, fatigue, incontinence, post-stroke seizures, sexual dysfunction, sleep-disordered breathing, depression and emotionalism. We review the role of caregivers and explore ways to support them and, lastly, remind the reader to be perceptive to the patient's spiritual needs. The literature is most robust, including controlled trials, for central post-stroke pain and depression. Synthesis and discussion outside these areas are frequently limited to smaller studies, case reports and expert opinion. While some data exists to guide informed decision-making, there is an urgent need to document best practice and identify appropriate clinical standards for the full spectrum of symptoms experienced by stroke survivors. We present the current and established data to aid health care providers in symptomatic and palliative management of stroke survivors. PMID:22258916
Creutzfeldt, Claire J; Holloway, Robert G; Walker, Melanie
BACKGROUND: Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study. METHODS: Validation was conducted across 5 African services and
Richard Harding; Lucy Selman; Godfrey Agupio; Natalya Dinat; Julia Downing; Liz Gwyther; Thandi Mashao; Keletso Mmoledi; Tony Moll; Lydia Mpanga Sebuyira; Barbara Panjatovic; Irene J Higginson
Little attention has been accorded to the terminal course and end-of-life care of patients after dialysis discontinuation. This prospective cohort observational study involves six dialysis clinics in the United States and two clinics in Canada. Data were collected on 131 patients who were undergoing maintenance dialysis and died after treatment discontinuation. Seventy-nine of the patients (60%) were prospectively studied until
Lewis M. Cohen; Michael Germain; David M. Poppel; Anne Woods; Carl M. Kjellstrand
Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients.
Abstract Hospital-based palliative care is becoming increasingly prevalent. There is growing evidence that it is having a positive impact on patients and their loved ones. In 2008, national data indicated that 58.5% of hospitals with 50 or more beds had a palliative care program. Data from a 2008 survey of California acute care hospitals showed that although 33% of sites had inpatient consultation services, one in five had been operational for only one year. As nascent palliative care programs grow, new issues arise and needs and plans change. Just as palliative care programs benefit from marketing and education plans, they also benefit from a plan to leverage external resources. Largely a missed opportunity, external resources such as organizations, networks, and experts can help palliative care service (PCS) leaders and team members gain information on everything from best practices to funding opportunities, while serving as sources for personal and professional support. The growing number of active PCSs and the increasing availability of support and expertise ensure that new programs no longer have to face challenges alone. Further, the steady increase in the number of new programs has created opportunities for those who are more experienced to serve as mentors for peers who are navigating the challenges of growing and sustaining a clinical service. The authors encourage both mentors and mentees to seek support from or provide support to others in the field. Leveraging the collective expertise and experiences in our field can ensure that palliative care continues to thrive and grow.
Kerr, Kathleen M.; Kutner, Jean S.; Ferris, Frank D.; Rathfon, Megan A.; Rabow, Michael W.
Objectives To identify those factors which adversely affected recruitment to a large multicentre palliative care study. Methods Patient accrual to a multicentre, observational, palliative care study was monitored at three critical junctures in the research process. (1) Eligibility—did the patient fulfil the study entry criteria? (2) Accessibility—was it possible to access the patient to be able to inform them about the study? (3) Consent—did the patient agree to participate in the study? The reasons why patients were ineligible, inaccessible or refused consent were recorded. Results 12?412 consecutive referrals to participating clinical services were screened for study inclusion of whom 5394 (43%) were deemed to be ineligible. Of the remaining patients 4617/7018 (66%) were inaccessible to the research team. The most common reasons being precipitous death, ‘gatekeeping’ by clinical staff or rapid discharge. Of the 2410 patients who were visited by the research team and asked to participate in the study 1378 (57%) declined. Overall 8.2% (1018/12?412) of patients screened participated in the study. There were significant differences in recruitment patterns between hospice inpatient units, hospital support and community palliative care teams. Conclusions Systematic monitoring and analysis of patient flows through the clinical trial accrual process provided valuable insights about the reasons for failure to recruit patients to a clinical trial and may help to improve recruitment in future studies.
Stone, Patrick C; Gwilliam, Bridget; Keeley, Vaughan; Todd, Chris; Kelly, Laura C; Barclay, Stephen
Integrating palliative care in the surgical and trauma intensive care unit: A report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care
Objective Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. Data Sources We searched the MEDLINE database from inception to May 2011 for all English language articles using the term “surgical palliative care” or the terms “surgical critical care,” “surgical ICU,” “surgeon,” “trauma” or “transplant,” and “palliative care” or “end-of- life care” and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. Data Extraction and Synthesis We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. Conclusions Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. “Consultative,” “integrative,” and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and “culture” in the unit and institution. Approaches that emphasize delivery of palliative care together with surgical critical care hold promise to better integrate palliative care into the surgical intensive care unit.
Mosenthal, Anne C.; Weissman, David E.; Curtis, J. Randall; Hays, Ross M.; Lustbader, Dana R.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret; Nelson, Judith E.
AbstractIntroduction and aimsThe electronic Palliative Care Summary (ePCS) is being introduced throughout Scotland to provide out of hours (OOH) staff with up to date records of medications, decisions regarding treatment and health status of patients requiring palliative care. Automatic twice-daily updates of information from General Practitioner (GP) records to a central electronic repository are available to OOH services. We sought
S Hall; C Campbell; P Kiehlman; P Murchie; S A Murray
Providing palliative care in the home presents a variety of challenges for nurses and other care providers. As part of a focused ethnographic study examining client/caregiver/care-provider relationships within the socio-cultural context of home-based palliative care, this paper describes the provision of palliative care to Canadian seniors with advanced cancer from the perspective of nurses. Data were collected through in-depth interviews (n=19) with three palliative care nurses and participant observations in four households over a six-to-eight-month period. Home-based palliative care nursing was depicted in this study as a dialectical experience, revealing three relational practice patterns: making time-forfeiting time, connecting-withdrawing, and enabling-disabling. Nurses attempted to negotiate the tensions between these opposing approaches to palliative care. Study findings suggest that the sociocultural context of palliative care is not conducive to high-quality palliative care and provide several insights related to future directions for practice, policy, and research. PMID:22860382
Ward-Griffin, Catherine; McWilliam, Carol; Oudshoorn, Abram
Interest in the use of cannabinoids in a clinical setting is gradually increasing, particularly in patients where more conventional treatments have failed. They have been reported as offering perceived benefits in a wide range of conditions, but the major interest at present is centred on their place in pain management and in the palliation of symptoms secondary to terminal cancer and neurological disease. The potential benefits include symptomatic relief for patients suffering from intractable neuropathic pain, anorexia, anxiety and muscle spasm. There is clear consensus that cannibinoids should not be used as a first-line monotherapy, but should be considered as valuable adjuvants to more commonly indicated therapeutic options in the management of palliative care patients. Scientific evidence documenting the benefits of the canibinoids nabilone and sativex is accumulating, but needs to be evaluated carefully in the light of the paucity of available data. Both drugs are usually used under the guidance of specialist units. Nabilone and Sativex are now controlled drugs, and are frequently used outside of their licensed indication (control of chemotherapy-induced nausea and vomiting) and hence particular care needs to be taken in evaluating the rational for their use. Sativex has been recently licenced for use in the management of patients with multiple sclerosis. PMID:20972379
Objective: Culture helps us grapple with, understand, and navigate the dying process. Although often overlooked, cultural values play a critical and influential role in palliative care. The purpose of the present study was two-fold: one, to review whether Latino/a cultural values have been integrated into the palliative care literature for Latinos/as; two, identify publications that provide recommendations on how palliative care providers can integrate Latino/a cultural values into the end-of-life care. Method: A comprehensive systematic review on the area of Latino/a cultural values in palliative care was conducted via an electronic literature search of publications between 1930-2013. Five articles were identified for reviewing, discussing, or mentioning Latino/a cultural values and palliative care. Results: Only one article specifically addressed Latino/a cultural values in palliative care. The four remaining articles discuss or mention cultural values; however, the cultural values were not the main focus of each article's thesis. Significance of results: The results of the current study highlight the lack of literature specifically addressing the importance of integrating Latino/a cultural values into the delivery of palliative care. As a result, this article introduces the Culture-Centered Palliative Care Model (CCPC). The article defines five key traditional Latino/a cultural values (i.e., familismo, personalismo, respeto, confianza, and dignidad), discusses the influence of each value on palliative health care, and ends with practical recommendations for service providers. Special attention is given to the stages of acculturation and ethnic identity. PMID:23768861
Adames, Hector Y; Chavez-Dueñas, Nayeli Y; Fuentes, Milton A; Salas, Silvia P; Perez-Chavez, Jessica G
The goal of palliative care is to relieve the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients. As death approaches, a patient's symptoms may require more aggressive palliation. As comfort measures intensify, so should the support provided to the dying patient's family. After the patient's death, palliative care focuses primarily on bereavement and support of the family.
Rome, Robin B; Luminais, Hillary H; Bourgeois, Deborah A.; Blais, Christopher M
Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation, religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia.
Broeckaert, B; Gielen, J; Van Iersel, T; Van den Branden, S
Emergency care for patients in palliative situations is not a rare event, but often difficult to handle, because training in palliative care for emergency physicians is often insufficient. This article proposes an algorithm that should facilitate the decision-making process in such emergencies. In addition, recommendations concerning the management of symptoms in the emergency medical services are presented. PMID:23504463
Makowski, Corinna; Marung, Hartwig; Callies, Andreas; Knacke, Peter; Kerner, Thoralf
The learning experiences of student nurses undertaking clinical placement are reported widely, however little is known about the learning experiences of health professionals undertaking continuing professional development (CPD) in a clinical setting, especially in palliative care. The aim of this study, which was conducted as part of the national evaluation of a professional development program involving clinical attachments with palliative care services (The Program of Experience in the Palliative Approach [PEPA]), was to explore factors influencing the learning experiences of participants over time. Thirteen semi-structured, one-to-one telephone interviews were conducted with five participants throughout their PEPA experience. The analysis was informed by the traditions of adult, social and psychological learning theories and relevant literature. The participants' learning was enhanced by engaging interactively with host site staff and patients, and by the validation of their personal and professional life experiences together with the reciprocation of their knowledge with host site staff. Self-directed learning strategies maximised the participants' learning outcomes. Inclusion in team activities aided the participants to feel accepted within the host site. Personal interactions with host site staff and patients shaped this social/cultural environment of the host site. Optimal learning was promoted when participants were actively engaged, felt accepted and supported by, and experienced positive interpersonal interactions with, the host site staff. PMID:20850915
Connell, Shirley E; Yates, Patsy; Barrett, Linda
Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…
Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.
|Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…
Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.
The term 'palliative care' is used to describe care given to patients with advanced, life-limiting illness of any aetiology. It is a philosophy of care that is patient and family-centred, designed to meet the needs of the patient and family. Wound care for palliative care patients should be managed so that patient and family needs\\/concerns are the main focus of
The purpose of the study was to evaluate the role of an online resource for dying children, their family members, and health care providers from the perspective of pediatric palliative care experts. Semistructured interviews with 12 leaders in pediatric palliative care in North America were conducted, exploring their perceptions and attitudes towards various aspects of Web-based resources for dying children and their care providers. Informants felt that an online resource may allow for a different form of expression, a connection between people undergoing a rare event, and an increase in education and support. Major challenges, such as accessibility, monitoring, and remaining current, would be ongoing. Other key themes included access, information, and anonymity. The data suggest that developing Web-based resources for dying young patients and their families may have merit. Should this take place, a feasibility study will be necessary to further determine the value of such a Web site for these vulnerable populations. PMID:18459596
Ens, Carla D L; Chochinov, Harvey M; Bérard, Josette L M; Harlos, Mike S; Stenekes, Simone J; Wowchuk, Suzanne M
Neuropathic pain can be distressing and difficult to treat, and remains a problem for a significant proportion of palliative care patients. This article considers the identification and assessment of neuropathic pain, and highlights some of the challenges specific to the palliative care population. Further discussion includes definitions, pathophysiology and implications for nursing practice. PMID:18414328
Callin, Sarah; Bennett, Michael I
BACKGROUND: Palliative Care is an approach that improves quality of life for patients and their families facing the problems associated with incurable life-threatening illness. In many countries, due to the rapidly ageing population, increasingly more people are suffering from serious chronic disease towards the end of life, making further development in palliative care a major public health challenge. The aim
Nils Schneider; Sara L Lueckmann; Franziska Kuehne; Katharina Klindtworth; Mareike Behmann
Fatigue is one of the most frequent symptoms in palliative care patients, reported in .80% of cancer patients and in up to 99% of patients following radio- or chemotherapy. Fatigue also plays a major role in palliative care for noncancer patients, with large percentages of patients with HIV, multiple sclerosis, chronic obstructive pulmonary disease or heart failure reporting fatigue.This paper
Lukas Radbruch; Florian Strasser; Frank Elsner; Jose Ferraz Gonçalves; Stein Kaasa; Friedemann Nauck; Patrick Stone
Discussions on ethics in palliative care often concentrate on issues like patient autonomy or euthanasia. However, the reality in the developing world begs discussion on an entirely different set of problems altogether. One should have a good death, no doubt, but one should also have an opportunity for a good life. Globalization unfortunately seems to worsen many of the burdens of the developing world, like the negative influence of the mighty pharmaceutical industry. Continuing medical education offered only by the pharmaceutical industry instills bias into the minds of most medical professionals. Prescription practices by many professionals are influenced by the industry; so much so, inexpensive drugs or formulations are abandoned in favor of expensive ones, adding to the burden of a much-suffering individual. Palliative care should have been a major force against such evils, but it seems to get more clinical and institutionalized with time, with the social issues taking a back seat. Unethical research practices and preferential treatment in drug availability are practices that continue to marginalize the less privileged. Adoption of the dominant ideology from the West in the developing world also raises problems like cultural unsuitability. Considering that the bulk of the suffering in the world is in poorer countries, these issues need to be addressed. PMID:15022958
Background Non-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In Germany, the medical home care for children and adolescents is to a large extent delivered by general paediatricians working in their own practice. However, these are rarely confronted with children suffering from life-limiting diseases. The aim of this study was therefore to examine potential barriers, incentives, and the professional self-image of general paediatricians with regard to paediatric palliative care. Methods Based on qualitative expert interviews, a questionnaire was designed and a survey among general paediatricians in their own practice (n = 293) was undertaken. The survey has been developed and performed in close cooperation with the regional professional association of paediatricians. Results The results showed a high disposition on part of the paediatricians to engage in palliative care, and the majority of respondents regarded palliative care as part of their profile. Main barriers for the implementation were time restrictions (40.7%) and financial burden (31.6%), sole responsibility without team support (31.1%), as well as formal requirements such as forms and prescriptions (26.6%). Major facilitations were support by local specialist services such as home care nursing service (83.0%), access to a specialist paediatric palliative care consultation team (82.4%), as well as an option of exchange with colleagues (60.1%). Conclusions Altogether, the high commitment to this survey reflects the relevance of the issue for paediatricians working in general practice. Education in basic palliative care competence and communication skills was seen as an important prerequisite for the engagement in paediatric palliative home care. A local network of specialist support on site and a 24/7 on-call service are necessary in order to facilitate the implementation of basic palliative care by paediatricians in their own practice.
Intraspinal analgesia can be helpful in some patients with intractable pain. Over 15 years palliative care professionals evolved their spinals policy through a repeated series of evaluations, discussions and literature reviews. One hundred intraspinal lines were then reviewed. Notable changes in policy were the switch from epidurals to intrathecals, and the insertion of lines during working hours rather than as emergencies. Our efficacy, and frequency of adverse effects, is equal or better to published studies. Key issues in reducing adverse effects were the improved care of the spinal line exit site, a change from bolus administration to continuous infusions, and modifying line insertion techniques. Current policy is to use continuous infusions of diamorphine and bupivacaine in a 1:5 ratio through externalized intrathecal lines. The lines are effective in approximately two thirds of patients and can be kept in place for up to 18 months. The policy continues to be updated and common documentation is now in place. PMID:15453621
Baker, Lisa; Lee, Mark; Regnard, Claud; Crack, Lindsay; Callin, Sarah
For the clinician who works in a palliative health care setting, the suicidal ideation of palliative care patients is a challenge. How are patients with a life-limiting illness who wish to hasten their death, and who express this suicidal ideation, understood in the context of Palliative Care? The present article is a systematic literature review of published research to determine
Palliative care was established rapidly in some countries, while in other countries its establishment has taken a different trajectory. This paper identifies core steps in developing a medical specialty and examines those taken by Israel as compared with the US and England for palliative care. It considers the next steps Israel may take. Palliative care aims to provide quality of life for those with serious illnesses by attending to the illness-prompted physical, mental, social, and spiritual needs of patients and their families. It has ancient roots in medicine; its modern iteration began against the backdrop of new cures and life-sustaining technology which challenged conceptions of how to respect the sanctity of life. The first modern hospice was created by Saunders; it provided proof that palliative care works, and this has occurred in Israel as well (the first step). Another key step is usually skills development among clinicians; in Israel, few education and training opportunities exist so far. Specialty recognition also has not yet occurred in Israel. Service development remains limited and a major shortage of services exists, compared to the US. Research capacity in Israel is also limited. Policy to develop and sustain palliative care in Israel is underway; in 2009, the Ministry of Health established policy for implementing palliative care. However, it still lacks a financially viable infrastructure. We conclude that palliative care in Israel is emerging but has far to go. Adequate resource allocation, educational guidelines, credentialed manpower and specialty leadership are the key factors that palliative care development in Israel needs.
ABSTRACT PROBLEM BEING ADDRESSED Family physicians face innumerable challenges to delivering quality palliative home care to meet the complex needs of end-of-life patients and their families. OBJECTIVE OF PROGRAM To implement a model of shared care to enhance family physicians’ ability to deliver quality palliative home care, particularly in a community-based setting. PROGRAM DESCRIPTION Family physicians in 3 group practices (N = 21) in Ontario’s Niagara West region collaborated with an interprofessional palliative care team (including a palliative care advanced practice nurse, a palliative medicine physician, a bereavement counselor, a psychosocial-spiritual advisor, and a case manager) in a shared-care partnership to provide comprehensive palliative home care. Key features of the program included systematic and timely identification of end-of-life patients, needs assessments, symptom and psychosocial support interventions, regular communication between team members, and coordinated care guided by outcome-based assessment in the home. In addition, educational initiatives were provided to enhance family physicians’ knowledge and skills. CONCLUSION Because of the program, participants reported improved communication, effective interprofessional collaboration, and the capacity to deliver palliative home care, 24 hours a day, 7 days a week, to end-of-life patients in the community.
Marshall, Denise; Howell, Doris; Brazil, Kevin; Howard, Michelle; Taniguchi, Alan
Objective. To illustrate distinctions and intersections of palliative care (PC) and end-of-life (EOL) services through examples from case-centered data of older adults cared for during a four-year ethnographic study of an acute care hospital palliative care consultation service. Methods. Qualitative narrative and thematic analysis. Results. Description of four practice paradigms (EOL transitions, prognostic uncertainty, discharge planning, and patient/family values and preferences) and identification of the underlying structure and communication patterns of PC consultation services common to them. Conclusions. Consistent with reports by other researchers, study data support the need to move beyond equating PC with hospice or EOL care and the notion that EOL is a well-demarcated period of time before death. If professional health care providers assume that PC services are limited to assisting with and helping patients and families prepare for dying, they miss opportunities to provide care considered important to older individuals confronting life-limiting illnesses.
Powers, Bethel Ann; Norton, Sally A.; Schmitt, Madeline H.; Quill, Timothy E.; Metzger, Maureen
Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary analysis explores the enactment of multiple roles for family members providing home-based palliative care to seniors with advanced cancer. Family members had multiple expectations to provide care but felt their expectations of services were unmet. The process of enacting multiple roles was depicted by three interrelated themes: balancing, re-prioritizing, and evolving. Positive and negative health responses resulted from attempts to minimize personal health while simultaneously maintaining health. "True" family-centred care was found to be lacking, but should be a goal of health professionals involved in end-of-life care. PMID:19158043
Clemmer, Sarah J; Ward-Griffin, Catherine; Forbes, Dorothy
Abstract Background Large gaps in the delivery of palliative care services exist in the outpatient setting, where there is a failure to address goals of care and to plan for and treat predictable crises. While not originally considered an ideal environment to deliver palliative care services, the emergency department presents a key decision point at which providers set the course for a patient's subsequent trajectory and goals of care. Many patients with serious and life-threatening illness present to emergency departments because symptoms, such as pain or nausea and vomiting, cannot be controlled at home, in an assisted living facility, or in a provider's office. Even for patients in whom goals of care are clear, families often need support for their loved one's physical as well as mental distress. The emergency department is often the only place that can provide needed interventions (e.g., intravenous fluids or pain medications) as well as immediate access to advanced diagnostic tests (e.g. computed tomography or magnetic resonance imaging). Discussion Palliative care services provide relief of burdensome symptoms, attention to spiritual and social concerns, goal setting, and patient–provider communication that are often not addressed in the acute care setting. While emergency providers could provide some of these services, there is a knowledge gap regarding palliative care in the emergency department setting. Emergency department-based palliative care programs are currently consultations for symptoms and/or goals of care, and have been initiated both by both the palliative care team and palliative care champions in the emergency department. Some programs have focused on the provision of hospice services through partnerships with hospice providers, which can potentially help emergency department providers with disposition. Conclusion Although some data on pilot programs are available, optimal models of delivery of emergency department-based palliative care have not been rigorously studied. Research is needed to determine how these services are best organized, what affect they will have on patients and caregivers, and whether they can decrease symptom burden and health care utilization.
Stone, Susan C.; Morrison, R. Sean
Abstract For patients hospitalized with life-threatening illnesses and their families, palliative care consultants can provide critical support by providing information about prognosis, ensuring that symptoms are managed, helping to clarify goals of care, and addressing psychosocial and spiritual concerns. However, once patients leave the hospital, many hospital-based palliative care teams (PCTs) cannot continue to play active roles in patient care. Gaps in discharge planning not only decrease quality of life for patients, but also translate into lack of support for caregivers. The palliative care population would be expected to benefit from a customized approach to hospital discharge. The aim of this study was to identify the range of health care experiences of family caregivers and patients who received palliative care consultations after they left the hospital, and to understand how PCTs might best prepare patients and caregivers for the post-hospital experience.
Benzar, Emma; Hansen, Lissi; Kneitel, Anna W.
Background According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined. Aim The aim of this study was to systematically develop a tool for GPs with which they can identify patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer respectively, who could benefit from proactive palliative care. Design A three-step procedure, including a literature review, focus group interviews with input from the multidisciplinary field of palliative healthcare professionals, and a modified Rand Delphi process with GPs. Method The three-step procedure was used to develop sets of indicators for the early identification of CHF, COPD, and cancer patients who could benefit from palliative care. Results Three comprehensive sets of indicators were developed to support GPs in identifying patients with CHF, COPD, and cancer in need of palliative care. For CHF, seven indicators were found: for example, frequent hospital admissions. For COPD, six indicators were found: such as, Karnofsky score ?50%. For cancer, eight indicators were found: for example, worse prognosis of the primary tumour. Conclusion The RADboud indicators for PAlliative Care Needs (RADPAC) is the first tool developed from a combination of scientific evidence and practice experience that can help GPs in the identification of patients with CHF, COPD, or cancer, in need of palliative care. Applying the RADPAC facilitates the start of proactive palliative care and aims to improve the quality of palliative care in general practice.
Thoonsen, Bregje; Engels, Yvonne; van Rijswijk, Eric; Verhagen, Stans; van Weel, Chris; Groot, Marieke; Vissers, Kris
BACKGROUND: The palliative services and programs have been developed with different intensity and modalities in all countries. Several studies have reported that a geographic variation in the availability and provision of palliative care services between and within countries exists, and that a number of vulnerable groups are excluded from these services. This survey estimates the distribution of places of care
Monica Beccaro; Massimo Costantini; Domenico Franco Merlo
Paramedics play an important role in out-of-hospital health care. They provide unscheduled care, assisting both patients with minor injuries and those experiencing life-threatening emergencies. Increasingly, paramedics are called on to manage chronic and complex health needs, including symptom relief for patients at the end of life. However, paramedics may not be well prepared to offer palliative care, as practice guidelines and education tend to focus on the management of acute medical emergencies and major trauma. Emergency medical services that employ paramedics rarely have practice guidelines or protocols that deal specifically with palliative care. PMID:22582470
Lord, Bill; Récoché, Katrina; O'Connor, Margaret; Yates, Patsy; Service, Melinda
Background: Palliative care for people with life-limiting non-malignant disease is increasingly prioritised. People with end-stage chronic obstructive pulmonary disease are among a key group of non-cancer patients likely to benefit from specialist palliative care, but it remains uncertain whether the needs of this group are met by existing services. Aim: To evaluate the experiences of patients with chronic obstructive pulmonary disease who accessed specialist palliative care. Design: Data from semi-structured interviews were analysed using a hermeneutic phenomenological approach. Setting/participants: Eight patients accessing specialist palliative care within one city in North West England. Results: Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical and psychological symptoms, reduced social isolation and a broadened physical environment. Participants were mainly aware of their poor prognosis, but discussion of referral to palliative care sometimes caused distress owing to the historical associations between dying and hospice care. Following engagement with services, participants' perceptions changed: palliative care was associated with social inclusion and opportunities to engage in reciprocal and altruistic social action. Negative associations were replaced by uncertainty and anxiety about the prospect of discharge. Conclusions: Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access. PMID:23681494
Hayle, Catherine; Coventry, Peter A; Gomm, Stephanie; Caress, Ann-Louise
Unlike in other nations, in Canada palliative care has its origins in university hospitals. It has subsequently developed in a few Canadian schools as an academic discipline closely linked with oncology programs. Although this model is successful, other faculties of medicine and cancer centres have been slow to emulate it. Today, the situation is rapidly changing, and both palliative care and oncology professionals are re-examining the manifest need for collaborative efforts in patient care, research and education. Palliative care must be regarded as an essential component of cancer care, its principles must be applied throughout the course of the illness and, as in other phases of cancer control, palliative care should be regarded as an exercise in prevention--prevention of suffering. This article discusses practical applications that flow from acceptance of these concepts.
Diagnosis of lethal fetal abnormality raises challenging decisions for parents and clinicians. Most parents opt for termination, which may include feticide. Advances in imaging seem unlikely to lead to earlier diagnoses. Perinatal palliative care offers an alternative. Parental decision making and the clinical aspects of perinatal palliative care were studied after a prenatal diagnosis of lethal fetal abnormality in 20 pregnancies. 40% of parents chose to continue the pregnancy and pursue perinatal palliative care. Six of these eight babies were liveborn and lived for between 1½?h and 3?weeks.
Breeze, A C G; Lees, C C; Kumar, A; Missfelder-Lobos, H H; Murdoch, E M
Comparative Effectiveness Research (CER) seeks to establish treatment objectives and concepts striving to achieve patient relevant progress in therapy on the basis of published evidence. Using the example of palliative medicine and palliative care, respectively, it will be demonstrated that these two are under-researched areas of care. In addition, it will become clear that the success of this interdisciplinary treatment concept for the seriously ill must be weighed in the light of traditional clinical research - far beyond the cancer diagnosis. The current distinction between curative and palliative research and care urgently needs to be reconsidered. PMID:22981024
Background Knowledge about the quality of end-of-life care in the elderly patient in Europe is fragmented. The European Union Geriatric\\u000a Medicine Society (EUGMS) Geriatric Palliative Medicine (GPM) Interest Group set as one of its goals to better characterize\\u000a geriatric palliative care in Europe.\\u000a \\u000a \\u000a \\u000a \\u000a Objective The goal of the current study was to map the existing palliative care structures for geriatric patients, the
R. Piers; S. Pautex; V. Curale; M. Pfisterer; M.-C. Van Nes; L. Rexach; M. Ribbe; N. Van Den Noortgate
Patients may experience wounds at or near the end of life that are difficult to treat and may not be amenable to healing. In these cases, hospice and palliative care may be considered. Palliative care approaches include stabilization of existing wounds, prevention of new wounds, and symptom management with a focus on quality of life. Treatment goals for nonhealing wounds at the end of life include managing exudate, controlling odor, maximizing mobility and function, preventing infection, and controlling pain and other symptoms. Complementary components of palliative care are also instituted including communication and psychosocial support for patients and families. PMID:20463544
Letizia, MariJo; Uebelhor, Jonathan; Paddack, Elizabeth
Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared. PMID:21556703
Kamal, Arif H; Currow, David C; Ritchie, Christine; Bull, Janet; Wheeler, Jane L; Abernethy, Amy P
Despite the seemingly evident pertinence of palliative care for patients suffering from non-oncological long-term life-threatening diseases, everyday clinical practice is far from that assumption. This study aims to explore palliative care service provision for these patients in Spain. Patients, family caregivers and healthcare professionals were interviewed, individually or in a group, aiming at identifying barriers in the provision of care and strategies to overcome them. Ritchie and Spencer's framework was used for data analysis. The barriers identified were as follows: lack of clarity about prognosis, the hegemony of the curative approach, avoiding words and the desire to cheat death. Provision of palliative care services for these patients should be guided by the characteristic trajectory of each type of disease. Even if healthcare systems were capable of providing specialized palliative care services to this large group of patients, other barriers should not be overlooked. It would then seem appropriate to provide therapeutic and palliative care simultaneously, thus facilitating adaptation processes for both patients and relatives. PMID:20817747
Mahtani-Chugani, Vinita; González-Castro, Inmaculada; de Ormijana-Hernández, Amaia Sáenz; Martín-Fernández, Roberto; de la Vega, Enrique Fernández
The number of older inmates in US correctional facilities is increasing and with it the need for quality palliative health care services. Morbidity and mortality are high in this population. Palliative care in the correctional setting includes most of the challenges faced in the free-living community and several unique barriers to inmate care. Successful models of hospice care in prisons have been established and should be disseminated and evaluated. This article highlights why the changing demographics of prison populations necessitates hospice in this setting and highlights many of the barriers that correctional and consulting physicians face while providing palliative care. Issues specific to palliative care and hospice in prison include palliative care standards, inmate-physician and inmate-family relationships, confidentiality, interdisciplinary care, do-not-resuscitate orders and advance medical directives, medical parole, and the use of inmate volunteers in prison hospice programs. We also include practical recommendations to community-based physicians working with incarcerated or recently released prisoners and describe solutions that can be implemented on an individual and systems basis. PMID:17712073
Linder, John F; Meyers, Frederick J
The palliative doctor gives the ‘touch of God’ as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life.
Mol, Rani P
Lung cancer patients face poor survival and experience co-occurring chronic physical and psychological symptoms. These symptoms can result in significant burden, impaired physical and social function and poor quality of life. This paper provides a review of evidence based interventions that support best practice supportive and palliative care for patients with lung cancer. Specifically, interventions to manage dyspnoea, one of the most common symptoms experienced by this group, are discussed to illustrate the emerging evidence base in the field. The evidence base for the pharmacological management of dyspnoea report systemic opioids have the best available evidence to support their use. In particular, the evidence strongly supports systemic morphine preferably initiated and continued as a once daily sustained release preparation. Evidence supporting the use of a range of other adjunctive non-pharmacological interventions in managing the symptom is also emerging. Interventions to improve breathing efficiency that have been reported to be effective include pursed lip breathing, diaphragmatic breathing, positioning and pacing techniques. Psychosocial interventions seeking to reduce anxiety and distress can also improve the management of breathlessness although further studies are needed. In addition, evidence reviews have concluded that case management approaches and nurse led follow-up programs are effective in reducing breathlessness and psychological distress, providing a useful model for supporting implementation of evidence based symptom management strategies. Optimal outcomes from supportive and palliative care interventions thus require a multi-level approach, involving interventions at the patient, health professional and health service level.
Schofield, Penelope; Zhao, Isabella; Currow, David
Background The aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care. Discussion We argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why. Conclusions The EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.
Abstract Background: Informal care provided by family members is an essential feature of health care systems worldwide. Although caregiving often begins early in the disease process, over time informal caregivers must deal with chronic, debilitating, and life-threatening illnesses. Despite thousands of published studies on informal care, little is known about the intersection of informal caregiving and formal palliative care. Objective: The goal of this review is to identify research priorities that would enhance our understanding of the relationship between informal caregiving and palliative care. Design: To better understand palliative care in the context of caregiving, we provide an overview of the nature of a caregiving career from inception to care recipient placement and death and the associated tasks, challenges, and health effects at each stage of a caregiving career. This in turn leads to key unanswered questions designed to advance research in caregiving and palliative care. Results: Little is known about the extent to which and how palliative care uniquely affects the caregiving experience. This suggests a need for more fine-grained prospective studies that attempt to clearly delineate the experience of caregivers during palliative and end-of-life phases, characterize the transitions into and out of these phases from both informal and formal caregiver perspectives, identify caregiver needs at each phase, and identify effects on key caregiver and patient outcomes. Conclusions: Inasmuch as most caregivers must deal with chronic, debilitating, and often life-threatening conditions, it is essential that we advance a research agenda that addresses the interplay between informal care and formal palliative care. PMID:23883146
Access to affordable priority palliative care medicines needs to be informed by good clinical data from well-conducted clinical trials designed to address efficacy, cost-effectiveness, and safety. Availability of priority palliative care symptom control medicines improves the provision of palliation in the place of patient's choice including the community. Within Australia, a National Medicines Policy and a Palliative Care Strategy endorsed
Debra Rowett; Peter J. Ravenscroft; Janet Hardy; David C. Currow
Constipation is one of the most common problems in patients receiving palliative care and can cause extreme suffering and discomfort. The aims of this study are to raise awareness of constipation in palliative care, provide clear, practical guidance on management and encourage further research in the area. A pan-European working group of physicians and nurses with significant experience in the management of constipation in palliative care met to evaluate the published evidence and produce these clinical practice recommendations. Four potentially relevant publications were identified, highlighting a lack of clear, practical guidance on the assessment, diagnosis and management of constipation in palliative care patients. Given the limited data available, our recommendations are based on expert clinical opinion, relevant research findings from other settings and best practice from the countries represented. Palliative care patients are at a high risk of constipation, and while general principles of prevention should be followed, pharmacological treatment is often necessary. The combination of a softener and stimulant laxative is generally recommended, and the choice of laxatives should be made on an individual basis. The current evidence base is poor and further research is required on many aspects of the assessment, diagnosis and management of constipation in palliative care. PMID:18838491
Larkin, P J; Sykes, N P; Centeno, C; Ellershaw, J E; Elsner, F; Eugene, B; Gootjes, J R G; Nabal, M; Noguera, A; Ripamonti, C; Zucco, F; Zuurmond, W W A
A credential is documented evidence of a pharmacist's qualifications; while credentialing is the method used to acquire, confirm, determine, and document a pharmacist's qualifications to practice. Voluntary credentials are important in clinical pharmacy specialties to ensure proficiency in caring for patients with complex pharmacotherapy needs. This article discusses current and future pharmacy pain management and palliative care credentialing opportunities. Pharmacists wishing to pursue voluntary pain management and palliative care credentialing may elect to take a multidisciplinary pain credentialing exam offered by the American Society of Pain Educators (ASPE) or American Academy of Pain Management (AAPM) and/or complete an American Society of Health System Pharmacists (ASHP) Postgraduate Year 2 (PGY2) pain management and palliative care pharmacy residency. A palliative care credentialing exam is not currently available to pharmacists. Efforts are underway within the pharmacy profession to standardize the board certification process, design a pain and palliative certificate program, and create a specialty pain management and palliative care board certification examination. PMID:22821926
Juba, Katherine M
Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.
Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil
Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team. PMID:22203878
Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil
Abstract Background: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned. Aim: The aim was to explore team interaction among team members in specialized palliative care teams. Design: Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. Setting/participants: Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included. Results: Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care. Conclusion: Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on one's own professional role and knowledge of other professions would most likely benefit patients and family caregivers. PMID:24041291
Klarare, Anna; Hagelin, Carina Lundh; Fürst, Carl Johan; Fossum, Bjöörn
This study evaluated the effectiveness of implementation of common assessment tools, collaborative care plans, and symptom management guidelines for cancer patients as a strategy to improve the quality, coordination, and integration of palliative care service across organizations and health care sectors. A pre-post design to measure the impact on symptom management, caregiver burden and satisfaction with care delivery, and service utilization was used. Two cohorts of eligible patients and caregivers completed Edmonton Symptom Assessment Scales, Caregiver Reaction Assessment and FAMCARE Scales and chart audits were conducted. Administrative data from each participating site were examined for utilization trends. Audits of 53 charts preimplementation and 63 postimplementation showed an increase in documentation of pain from 24.5% to 74.6% (P<0.001) of charts. Administrative data showed a decrease in the percentage of patients with at least one emergency room visit from 94.3% to 84.8% (P<0.001), in the percentage of patients with at least one admission to the acute care hospital (P<0.001), and deaths in acute care 43.1%-35.7% (P=0.133). There was minimal change in the intensity of symptoms (P=0.591), and no change in the burden on the caregiver (P=0.086) or caregiver satisfaction with care (P=0.942). This study showed that implementation of common assessment tools, collaborative care plans, and symptom management guidelines across health sectors can result in some increased documentation of symptoms and efficiencies in care. Future projects should consider imbedding a continuous quality improvement methodology and longer timelines into their projects to improve outcomes. PMID:18358693
Dudgeon, Deborah J; Knott, Christine; Eichholz, Mary; Gerlach, Jacqueline Lochhaas; Chapman, Cheryl; Viola, Raymond; Van Dijk, Janice; Preston, Sharon; Batchelor, Diane; Bartfay, Emma
...Enter Into Provider Agreements for Extended Care Services AGENCY: Department of Veterans...provider agreements to obtain extended care services from non-VA providers. In addition...rulemaking proposes to include home health care, palliative care, and...
OBJECTIVE.The aim of this research project was to obtain an understanding of the barriers to and facilitators of providing palliative care in neonatal nursing. This article reports the first phase of this research: to develop and administer an instrument to measure the attitudes of neonatal nurses to palliative care. METHODS.The instrument developed for this research (the Neonatal Palliative Care Attitude
Victoria Kain; Glenn Gardner; Patsy Yates
Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations compromise the quality of evidence that can be obtained from empirical research on terminally ill subjects. This critique aims to appraise the need for focused research, in order to develop clinical and policy decisions that will guide health care professionals in their care of dying patients. Weighted against this need are tenets that value the practical and ethical challenges of palliative care research as unique and insurmountable. The review concludes that, provided investigators compassionately apply ethical principles to their work, there is no justification for not endeavouring to improve the quality of palliative care through research.
Abstract Objectives Regional variation in health care use in the last 6 months of life is well documented. Our objective was to examine whether an association exists between cardiologists' tendencies to discuss palliative care for patients with advanced heart failure and the regional use of health care in the last 6 months of life. Methods We performed a national mail survey of a random sample of 994 eligible Cardiologists from the American Medical Association Masterfile. Hypothetical patient scenarios were used to explore physician management of patient scenarios. Results We received 614 responses (response rate: 62%). In a 75-year-old with symptomatic chronic heart failure and asymptomatic nonsustained ventricular tachycardia, cardiologists in regions with high use in the last 6 months of life were less likely to have discussions about palliative care (23% versus 32% for comparisons between the highest and lowest quintiles, p?=?0.04). Similarly, in an 85 year-old with symptomatic chronic heart failure and an acute exacerbation, cardiologists in high use regions were less likely to have discussions about palliative care (35% versus 47%, p?=?0.0008). Conclusions Despite professional guidelines suggesting that cardiologists discuss palliative care with patients with late stage heart failure, less than half of cardiologists would discuss palliative care in two elderly patients with late-stage heart failure and this guideline discordance was worse in the regions with more health care use in the last 6 months of life.
Peterson, Pamela N.; Sirovich, Brenda E.; Wennberg, David E.; Gallagher, Patricia M.; Lucas, F. Lee
Background Over the last decade technology has rapidly changed the ability to provide home telehealth services. At the same time, pediatric palliative care has developed as a small, but distinct speciality. Understanding the experiences of providing home telehealth services in pediatric palliative care is therefore important. Methods A literature review was undertaken to identify and critically appraise published work relevant to the area. Studies were identified by searching the electronic databases Medline, CINAHL and Google Scholar. The reference list of each paper was also inspected to identify any further studies. Results There were 33 studies that met the inclusion criteria of which only six were pediatric focussed. Outcome measures included effects on quality of life and anxiety, substitution of home visits, economic factors, barriers, feasibility, acceptability, satisfaction and readiness for telehealth. While studies generally identified benefits of using home telehealth in palliative care, the utilisation of home telehealth programs was limited by numerous challenges. Conclusion Research in this area is challenging; ethical issues and logistical factors such as recruitment and attrition because of patient death make determining effectiveness of telehealth interventions difficult. Future research in home telehealth for the pediatric palliative care population should focus on the factors that influence acceptance of telehealth applications, including goals of care, access to alternative modes of care, perceived need for care, and comfort with using technology.
Background: Heart failure is a common condition with a significant physical and psychological burden for patients and their families. The need for supportive and palliative care: It is well recognised that palliative care is important in patients with advanced heart failure. What is known: Heart failure patients have limited access to palliative care services. Barriers to palliative care include difficult prognostication due to the unpredictable disease trajectory and inadequate initiation of conversations about end-of-life care. What is not known: There are gaps in the evidence for symptom control, especially for symptoms other than pain or dyspnoea, but recommendations are becoming increasingly evidence based. Implications for research, policy and practice: There are challenges to research in this area although progress is being made with increasing numbers of trials and use of novel research methods. Integrated models of care based on symptom triggers rather than prognosis are recommended. At the centre is excellent communication both with the patient and between services to ensure the best possible care. PMID:23838375
Gadoud, Amy; Jenkins, Shona Mm; Hogg, Karen J
ABSTRACT\\\\BACKGROUND:Due to the growing number of elderly with advanced chronic conditions, healthcare services will come under increasing pressure. Teleconsultation is an innovative approach to deliver quality of care for palliative patients at home. Quantitative studies assessing the effect of teleconsultation on clinical outcomes are scarce. The aim of this present study is to investigate the effectiveness of teleconsultation in complex
F. Duursma; H. J. Schers; K. C. P. Vissers; J. G. J. Hasselaar
A 1-day training event for pediatric residents with interdisciplinary staff was held, which was modeled after the Initiative for Pediatric Palliative Care (IPPC). Training included relational communication, cultural humility, pain-symptom management, family-centered care, team problem solving, and strategic planning using didactic, small group, and plenary platforms. Two bereaved parents were co-learners and trainers. Twenty-six interdisciplinary staff participated. A positive impact was measured in new knowledge gained, value in collaborative learning with health care professionals and families, and ability to work with professionals outside participants' own unit. Confidence to advocate for improved pediatric palliative care was also noted. The IPPC curriculum is easily adapted for resident education. Incorporating family members as co-learners and teachers is valuable. Advocacy for pediatric palliative care may follow this type of experience. PMID:22057208
Carter, Brian S; Swan, Rebecca
The 9th annual Palliative Care Congress, organised by the Palliative Care Research Society and the Association of Palliative Medicine, took place in Gateshead, England, on 14-16 March at the impressive The Sage Gateshead on the bank of the river Tyne. Proceedings got under way in dramatic fashion with a production of the Nell Dunne play Home Death, which International Journal of Palliative Nursing part-sponsored. The play was well received by the early comers to the Congress, as evidenced by the comment that it was interesting to experience the very familiar event of a patient's death from the unfamiliar perspective of the person's relatives. This refreshingly alternative start to the Congress continued into the official opening next morning, with a vibrant and humorous performance from the Newcastle Sword Dancers that no doubt helped to cast off the last traces of sleep for many a delegate. PMID:22584386
Background Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. Methods The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. Results The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. Conclusion Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.
Hudson, Peter; Quinn, Karen; O'Hanlon, Brendan; Aranda, Sanchia
The aim of palliative medicine is the best possible quality of life. Based upon literature and clinical experience we address factors of importance for the meeting between the palliative patient and the physician. Family and network, personality and behaviour vary between palliative patients and have effect upon their coping; these factors should be reflected in the meeting between the physician and the patient. Communication with a palliative patient also aims at a systematic assessment of his or her various symptoms and the physician should have a broad armamentarium of communications skills. The optimal way to assess symptoms is by use of clinical interviews supplemented with standardized measurements. Instruments such as the Edmonton Symptom Assessment System are very useful in the assessment of the commonest symptoms. The assessments should include patients' perspectives and what priority they give to relevant interventions. Treatment should be evaluated systematically in order to avoid ineffective treatments and to reduce side effects and interactions. The aim is to give patients as good and as long a time as possible in the place in which they want to spend the last part of their lives. Palliative medicine often combines the art of medicine with new technology. The focus on quality of life and the patient perspective is paramount, and the approach to the patient should reflect this. PMID:16477286
Loge, Jon Håvard; Bjordal, Kristin; Paulsen, Ørnulf
Providing quality palliative care is a daunting task profoundly impacted by diminished patient capacity at the end of life. Alzheimer disease (AD) is a disorder that erases our memories and is projected to increase dramatically for decades to come. By the time the patients with AD reach the end stage of the disease, the ability of patients to provide pertinent subjective complaints of pain and discomfort would have vanished. Historical perspectives of palliative care, exploration of the AD process, ethical issues, and crucial clinical considerations are provided to improve the understanding of disease progression and quality of care for patients with end-stage AD. PMID:22811214
Yeaman, Paul A; Ford, James L; Kim, Kye Y
The provision of palliative care for convicted criminals ignites debate about morality and equality. The New Zealand prison population includes a higher proportion of smokers, Maori (native New Zealanders), and intravenous drug users than is found in the general community; prisoners as a group are therefore at greater risk of developing a terminal illness. The sparse literature mostly originates from America, which necessitates consideration of the relevance to corrections systems in other societies. This paper examines some of the issues surrounding the provision of palliative care for prisoners in the New Zealand correction system. These issues may challenge some of the basic principles on which modern hospice care has been developed. PMID:15022957
Lum, Kerryn L
It is part of a palliative care assessment to identify patients' spiritual needs. According to Buddhism, suffering is inherent to all human beings. Advice on how suffering can be reduced in the course of serious illness might be helpful to patients with incurable and progressive diseases. Palliative care could benefit from Buddhist insights in the form of compassionate care and relating death to life. Buddhist teachings may lead to a more profound understanding of incurable diseases and offer patients the means by which to focus their minds while dealing with physical symptoms and ailments. This might not only be beneficial to followers of Buddhism but to all patients. PMID:22871512
Masel, Eva K; Schur, Sophie; Watzke, Herbert H
Purpose The call for clinically relevant outcome criteria has been raised, as assessment of adequate quality of service providers\\u000a is essential with increasing momentum in the development of palliative care in most European countries. The aim of this study\\u000a is to investigate important dimensions and indicators for assessment and evaluation of palliative care from the perspective\\u000a of multi-disciplinary German experts working
Tania Pastrana; Lukas Radbruch; Friedemann Nauck; Gerhard Höver; Martin Fegg; Martina Pestinger; Josef Roß; Norbert Krumm; Christoph Ostgathe
Palliative care started in Hong Kong in 1982. It gradually established an increasingly important role in cancer care. Hong Kong is fortunate because analgesic drugs and expertise from various disciplines and specialties in pain management are readily available. A holistic approach to pain management has been adopted; various dimensions of pain are assessed and managed, and outcomes evaluated. Despite efforts in public education, patient-related barriers to pain management still exist, and it is important that misconceptions of patients be corrected. To promote the quality of palliative care and pain management, efforts have been made to provide training of healthcare professionals, and on formation of professional societies for palliative care doctors and nurses. In Hong Kong, palliative medicine achieved medical specialty status in 1998, with a curriculum and a structured training program designed for doctors interested in this field. Efforts are underway to further improve palliative care and pain management in Hong Kong through the formation of consultative teams in general hospitals, enhanced liaison with nursing homes, and possibly by redefining the role of traditional Chinese medicine in pain management. PMID:15022952
Sham, Mau Kwong Michael
This study aims to explore in depth the needs, current knowledge, and attitudes of all ranks of old age home staff. A large-scale qualitative study with 13 semistructured focus groups was conducted in Hong Kong. Key themes were extracted by framework analysis. Three major themes were extracted, including role as a service provider, current knowledge, and attitude toward palliative care.
Raymond S. K. Lo; Bonnie H. F. Kwan; Kay P. K. Lau; Cecilia W. M. Kwan; L. M. Lam; Jean Woo
Goals We aimed to evaluate the palliative care quality for terminal cancer patients as a reference for prospective service improvements.\\u000a \\u000a \\u000a \\u000a Patients and methods A prospective study was conducted to analyze the quality audit data collected from 1,476 samples in one medical center’s palliative\\u000a care unit. Lai’s modified version of the support team assessment schedule was utilized for 2-year data collection, applying\\u000a 17
Li-Yun Tsai; In-Fun Li; Ching-Ping Liu; Wen-Hao Su; Tse-Yun Change
Background Disseminating palliative care is a critical task throughout the world. Several outcome studies explored the effects of regional palliative care programs on a variety of end-points, and some qualitative studies investigated the process of developing community palliative care networks. These studies provide important insights into the potential benefits of regional palliative care programs, but the clinical implications are still limited, because: 1) many interventions included fundamental changes in the structure of the health care system, and, thus, the results would not be applicable for many regions where structural changes are difficult or unfeasible; 2) patient-oriented outcomes were not measured or explored only in a small number of populations, and interpretation of the results from a patient's view is difficult; and 3) no studies adopted a mixed-method approach using both quantitative and qualitative methodologies to interpret the complex phenomenon from multidimensional perspectives. Methods/designs This is a mixed-method regional intervention trial, consisting of a pre-post outcome study and qualitative process studies. The primary aim of the pre-post outcome study is to evaluate the change in the number of home deaths, use of specialized palliative care services, patient-reported quality of palliative care, and family-reported quality of palliative care after regional palliative care intervention. The secondary aim is to explore the changes in a variety of outcomes, including patients' quality of life, pain intensity, family care burden, and physicians' and nurses' knowledge, difficulties, and self-perceived practice. Outcome measurements used in this study include the Care Evaluation Scale, Good Death Inventory, Brief pain Inventory, Caregiving Consequence Inventory, Sense of Security Scale, Palliative Care Knowledge test, Palliative Care Difficulties Scale, and Palliative Care Self-reported Practice Scale. Study populations are a nearly representative sample of advanced cancer patients, bereaved family members, physicians, and nurses in the region. Qualitative process studies consist of 3 studies with each aim: 1) to describe the process in developing regional palliative care in each local context, 2) to understand how and why the regional palliative care program led to changes in the region and to propose a model for shaping regional palliative care, and 3) to systemically collect the barriers of palliative care at a regional level and potential resolutions. The study methodology is a case descriptive study, a grounded theory approach based on interviews, and a content analysis based on systemically collected data, respectively. Discussion This study is, to our knowledge, one of the most comprehensive evaluations of a region-based palliative care intervention program. This study has 3 unique aspects: 1) it measures a wide range of outcomes, including quality of care and quality of life measures specifically designed for palliative care populations, whether patients died where they actually preferred, the changes in physicians and nurses at a regional level; 2) adopts qualitative studies along with quantitative evaluations; and 3) the intervention is without a fundamental change in health care systems. A comprehensive understanding of the findings in this study will contribute to a deeper insight into how to develop community palliative care. Trial Registration UMIN Clinical Trials Registry (UMIN-CTR), Japan, UMIN000001274.
To meet the complex needs of patients requiring palliative care and to deliver holistic end-of-life care to patients and their families, an interprofessional team approach is recommended. Expert palliative care teams work to improve the quality of life of patients and families through pain and symptom management, and psychosocial spiritual and bereavement support. By establishing shared care models in the community setting, teams support primary healthcare providers such as family physicians and community nurses who often have little exposure to palliative care in their training. As a result, palliative care teams strive to improve not only the end-of-life experience of patients and families, but also the palliative care capacity of primary healthcare providers. The aim of this qualitative study was to explore the views and experiences of community-based palliative care team members and key-informants about the barriers involved using a shared care model to provide care in the community. A thematic analysis approach was used to analyse interviews with five community-based palliative care teams and six key-informants, which took place between December 2010 and March 2011. Using the 3-I framework, this study explores the impacts of Institution-related barriers (i.e. the healthcare system), Interest-related barriers (i.e. motivations of stakeholders) and Idea-related barriers (i.e. values of stakeholders and information/research), on community-based palliative care teams in Ontario, Canada. On the basis of the perspective of team members and key-informants, it is suggested that palliative care teams experience sociopolitical barriers in an effort to establish shared care in the community setting. It is important to examine the barriers encountered by palliative care teams to address how to better develop and sustain them in the community. PMID:22469189
DeMiglio, Lily; Williams, Allison
Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations
A M Jubb
The concept of symbiotic niceness illustrates a mutually shared advantage in the nurse–patient relationship. This relationship is premised on the co-production of niceness through the doing of psychosocial care. This paper presents an account of ‘symbiotic niceness’ produced in palliative care nurses’ talk. The data are collected from two hospices and one general hospital for the dying. The analysis of
Ethical care is beginning to be recognised as care that accounts for the views of those at the receiving end of care. However, in the context of palliative and supportive district nursing care, the patients' and their carers' views are seldom heard. This qualitative research study explores these views. Data were collected through semi-structured interviews with 26 patients with palliative and supportive care needs receiving district nursing care, and 13 of their carers. Participants were recruited via community nurses and hospices between September 2010 and October 2011. Post-structural discourse analysis is used to examine how discourses operate on a moral level. One discourse, 'busyness', is argued to preclude a moral form of nursing care. The discourse of friendship is presented to contrast this. Discussion explores Gallagher's 'slow ethics' and challenges the currently accepted ways of measuring to improve quality of care concluding that quality cannot be measured. PMID:23702898
Nagington, Maurice; Luker, Karen; Walshe, Catherine
Aims Few studies have described after-hours calls in hospice patient care. This retrospective study examines the timing of after-hours telephone triage services; the reasons for access to after-hours hospice and palliative care services; and the predominant nursing interventions offered in after-hours calls in hospice and palliative care. Methods A fixed coding scheme was used to code a de-identified after-hours triage phone log of all calls between July 2005 and June 2006 (n=4,434) from a Pennsylvania hospice and palliative care services organization. Descriptive statistics were used to identify call timing pattern, call reasons, and predominant nursing interventions. Results Triage services were utilized most frequently to request assistance with signs and symptoms control (25.7%), report death (17.8%), and to request a home visit (15.3%). The top nursing interventions included updating case managers or supervisors about the needs of follow-up (29.5%), coordinating home visits (20.5%), and instructing caregivers or patients on how to control new signs and symptoms (19.8%). Conclusions A better understanding of when and why patients and their family caregivers utilize after-hours hospice triage services can assist in the design of future proactive interventions to improve care, and enhance training for new and existing hospice triage nurses.
Jiang, Yun; Gentry, Amanda L.; Pusateri, Margaret; Courtney, Karen L.
A large proportion of deaths in the United States occur in the intensive care unit (ICU) or after a stay in the ICU, and there is evidence of problems in the quality of care these patients and their families receive. In an effort to respond to this problem, we developed a multifaceted, nurse-focused, quality improvement intervention that is based on self-efficacy theory applied to changing clinician behavior. We have called the intervention "Integrating Palliative and Critical Care." This five-component intervention includes: 1) critical care clinician education to increase knowledge and awareness of the principles and practice of palliative care in the ICU, 2) critical care clinician local champions to provide role modeling and promote attitudinal change concerning end-of-life care, 3) academic detailing of nurse and physician ICU directors to identify and address local barriers to improving end-of-life care in each ICU, 4) feedback of local quality improvement data, and 5) system supports including implementation of palliative care order forms, family information pamphlets, and other system supports for providing palliative care in the ICU. The goal of this report is to describe the conceptual model that led to the development of the intervention, and for each of the five components, we describe the theoretical and empirical support for each component, the content of the component, and the lessons we have learned in implementing the component. Future reports will need to examine the ability of the interventions to improve outcomes of palliative care in the ICU. PMID:17057602
Treece, Patsy D; Engelberg, Ruth A; Shannon, Sarah E; Nielsen, Elizabeth L; Braungardt, Theresa; Rubenfeld, Gordon D; Steinberg, Kenneth P; Curtis, J Randall
Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. Significance of results The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.
WIENER, LORI; MCCONNELL, DENICE GRADY; LATELLA, LAUREN; LUDI, ERICA
Recent advances in medical care have improved the survival of newborn babies born with various problems. Despite this death in the neonatal intensive care unit (NICU) is an inevitable reality. For babies who are not going to “get better,” the health care team still has a duty to alleviate the physical suffering of the baby and to support the family. Palliative care is a multidisciplinary approach to relieve the physical, psycho social, and spiritual suffering of patients and their families. Palliative care provision in the Indian NICU settings is almost nonexistent at present. In this paper we attempt to “build a case” for palliative care in the Indian NICU setting.
Dighe, Manjiri P; Muckaden, Maryann A; Manerkar, Swati A; Duraisamy, Balaji P
The disproportionate suffering of the world's poor from AIDS and cancer has generated efforts to promote palliative care as an affordable alternative to expensive disease-modifying therapies. These well-intentioned efforts stem from a wish to respond to the suffering of the poor as quickly and widely as possible and from the view that only inexpensive interventions are feasible in poor settings. Such efforts also may be informed by the cautious attitude of palliative care in rich countries toward disease-modifying treatments for patients with advanced life-threatening illnesses. Yet, acceptance of unequal access for the poor to life-saving medical services that are badly needed and potentially feasible is unjust. Although palliative interventions to relieve the disproportionate physical, psychological, and social suffering of the poor are essential, they should be integrated with preventive and disease-modifying interventions for major killers, such as acquired immunodeficiency syndrome and cancer. PMID:18971074
Krakauer, Eric L
...Review; Comment Request: Palliative Care: Conversations Matter Evaluation SUMMARY...2013, page 35942 and allowed 60-days for public comment. No public comments...writing. Proposed Collection: Palliative Care: Conversations Matter...
Background In North-Rhine Westphalia (Germany) a pilot project for an extensive service provision of palliative care for children and adolescents has been implemented. Accompanying research was undertaken with the aim to assess the status quo of service delivery at the outset of the project and to evaluate the effects of the pilot project. As part of the research, barriers and needs with respect to paediatric palliative home care in the target region were explored. Methods Semi-structured interviews with 24 experts in the field of paediatrics, palliative and hospice care have been conducted and were analysed by qualitative content analysis. Results Four main categories emerged from the interviews: (1) specific challenges and demands in palliative care for children and adolescents, (2) lack of clear legal and financial regulations, (3) gaps in the existing care delivery, and (4) access to services. Generally the interviews reflected the observation that the whole field is currently expanding and that certain deficits are temporary barriers that will be resolvable in the medium-term perspective. Conclusions Predominant barriers were seen in the lack of clear legal and financial regulations which take into account the specific challenges of palliative care in children and adolescents, as well as in a shortcoming of specialist services for a local based care provision throughout the federal country.
A growing body of research and clinical reports support the benefits of utilizing animal-assisted therapy (AAT) as a complementary, transdisciplinary treatment intervention in medical settings. However, fewer articles are found demonstrating AAT's use in palliative care settings. This article is a study of the effects of AAT in palliative care situations, presenting one anecdotal clinical vignette. In this way, the efficacy of this technique in decreasing patient pain, thereby increasing patient quality of life, and lowering staff stress levels may be illustrated. PMID:23977780
Engelman, Suzanne R
The palliative approach to patients with ESKD includes all aspects of the physical, emotional and spiritual dimensions of the illness and care of the family. Health professionals dealing with patients with ESKD need to acquire skills in these areas Continuing collaboration between renal medicine and palliative medicine is essential The cultural and religious beliefs of patients may inform or determine their view on medical decision-making including in relation to the withholding or withdrawing of dialysis and the care of the dying. PMID:23586981
This literature review investigates nurses' attitudes towards providing artificial nutrition and hydration (ANH) in the palliative care setting. Various factors that influence nurses' attitudes are examined. While some of the findings have limited generalisability because of the dearth of evidence originating from the UK, United States and western Europe, the issues should still be considered. It is recommended that more research is carried out examining nurses' attitudes towards providing ANH in palliative care in the UK, to gain a better understanding of the factors that may influence decision making. PMID:23431937
Background Case management is a heterogeneous concept of care that consists of assessment, planning, implementing, coordinating, monitoring, and evaluating the options and services required to meet the client's health and service needs. This paper describes the result of an expert panel procedure to gain insight into the aims and characteristics of case management in palliative care in the Netherlands. Methods A modified version of the RAND®/University of California at Los Angeles (UCLA) appropriateness method was used to formulate and rate a list of aims and characteristics of case management in palliative care. A total of 76 health care professionals, researchers and policy makers were invited to join the expert panel, of which 61% participated in at least one round. Results Nine out of ten aims of case management were met with agreement. The most important areas of disagreement with regard to characteristics of case management were hands-on nursing care by the case manager, target group of case management, performance of other tasks besides case management and accessibility of the case manager. Conclusions Although aims are agreed upon, case management in palliative care shows a high level of variability in implementation choices. Case management should aim at maintaining continuity of care to ensure that patients and those close to them experience care as personalised, coherent and consistent.
An audit was undertaken of people with a diagnosis of breast cancer who were referred to a community palliative care specialist nursing team over a 12-month period, to explore the reasons for referral to the service and the duration of involvement with the service. Breast cancer patients accounted for 10% of the total referrals to the specialist service, with symptom management (including pain control) and emotional support being the main reasons for referral. The majority of people referred with breast cancer had metastatic breast cancer (87%); interestingly, 13% had primary breast cancer. The mean duration of intervention was 3 months and 1 week. Referrals seemed to occur late in patients' disease trajectories, and total numbers were lower than might be expected. It may be concluded that there is scope for the specialist palliative care team to be a more integral part of care for patients with metastatic breast cancer. PMID:23435538
... patient and family needs such as home nursing care, social services, pain management, and spiritual support. The October 12, 2005, issue of JAMA includes an article about palliative sedation . PALLIATIVE ... and Palliative Care Organization 800/658-8898 www.caringinfo.org • Hospice ...
Although the majority of children with cancer are cured of their illness, the children who die from their disease or complications\\u000a require special care at the end of life. We present special issues and challenges unique to pediatric palliative care and\\u000a suggest ways in which we can face these issues and address the challenges. The care must be family centered
Debra L. Friedman; Joanne M. Hilden; Kristen Powaski
Although the majority of children with cancer are cured of their illness, the children who die from their disease or complications\\u000a require special care at the end of life. We present special issues and challenges unique to pediatric palliative care and\\u000a suggest ways in which we can face these issues and address the challenges. The care must be family centered
Debra L. Friedman; Joanne M. Hilden; Kristen Powaski
Background: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of de- ceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medi- cal Center, Palo Alto, Calif. Methods: Sixty-eight
Nancy Contro; Judith Larson; Sarah Scofield; Barbara Sourkes; Harvey Cohen
Effective delivery of high-quality palliative care requires effective interprofessional teamworking by skilled health and social care professionals. Palliative care is therefore highly suitable for sowing the seeds of interprofessional teamworking in early professional education. This paper describes experiences of running undergraduate interprofessional workshops in palliative care for medical, nursing, social work, physiotherapy and occupational therapy students. These workshops are unusual in three respects: first, the involvement of family carers mean that these learning experiences are rooted in clinical reality; secondly, there is no attempt to 'tidy up' the story for the students; thirdly, unlike many undergraduate interprofessional programmes, these workshops have been sustained over several years. Evaluation of these workshops demonstrate that students value and enjoy the opportunity to work together; they find the experience moving, informative and interesting. Feedback from carers showed that they appreciated the opportunity to present their real-life experiences to students. Our evidence suggests that palliative care is a suitable subject for undergraduate interprofessional education. PMID:12403506
Wee, B; Hillier, R; Coles, C; Mountford, B; Sheldon, F; Turner, P
BackgroundThe American Board of Surgery (ABS) has emphasized that palliative care education should be included in surgical training. The few formal curricula for teaching palliative care, while effective, are time-intensive and have low longitudinal participation rates. The aim of this project was to design a feasible and effective palliative care intervention for general surgery residency training.
Luise I. M. Pernar; Sarah E. Peyre; Douglas S. Smink; Susan D. Block; Zara R. Cooper
BACKGROUND: Models of palliative care delivery develop within a social, cultural, and political context. This paper describes the 30-year history of the National Tumor Association (ANT), a palliative care organization founded in the Italian province of Bologna, focusing on this model of home care for palliative cancer patients and on its evaluation. METHODS: Data were collected from the 1986-2008 ANT
Marina Casadio; Guido Biasco; Amy Abernethy; Valeria Bonazzi; Raffaella Pannuti; Franco Pannuti
Like any other speciality, palliative care needs a scientific foundation on which to base its practice. Research in palliative care is particularly difficult because of the characteristics of the patient population under study (e.g. advanced disease, poor performance status and limited prognosis). The aim of this paper was to highlight the challenges of recruitment into clinical trials in palliative care.
J Ling; E Rees; J Hardy
|Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…
McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin
...Request; Pediatric Palliative Care Campaign Pilot Survey Summary...effect if received within 60-days of the date of this publication...Collection: Pediatric Palliative Care Campaign Pilot Survey-0925-New-National...developed a Pediatric Palliative Care Campaign to address the...
To determine the role of non-cancer palliative care in inpatient services in Germany, data from the Hospice and Palliative Care Evaluation (HOPE) were analysed. Since 1999, a three-month census has been conducted annually in German palliative care units. Pooled data from 2002-2005 were tested for differences between non-cancer patients (NCs) and cancer patients (Cs). A total of 4182 patients (NC: 3.5%; C: 96.5%) were documented; functional status (using Eastern Cooperative Oncology Group (ECOG) measures) in NCs was lower compared to Cs (p?=?0.009). NCs suffered more often from dyspnoea (40%; C: 29%; p?=?0.004), weakness (92,3%; C: 84,5%; p?=?0.011) and tiredness (75.4%; C: 66.7%; p?=?0.03) and less from nausea (17.1%; C: 28.9%; p?=?0.002), vomiting (8.2%; C: 19.4%; p?=?0.001) or loss of appetite (55.5%; C: 67.9%; p?=?0.002). There were no differences in pain and constipation. Other problems (nursing, psychological) were more frequent for NCs, in particular the need for support in the activities of daily life (90.3%; C: 72.8%; p?0.001) and disorientation/confusion (32.1%; C: 17.2%; p?0.001). There were no differences in social problems. NCs are still rare in specialized inpatient palliative care institutions in Germany. The palliative care needs in patients with non-malignant disease will challenge the health care system as the workload for these services will grow over proportionally. PMID:20937612
Ostgathe, Christoph; Alt-Epping, Bernd; Golla, Heidrun; Gaertner, Jan; Lindena, Gabriele; Radbruch, Lukas; Voltz, Raymond
BACKGROUND: Studies have shown that education can improve the knowledge, attitudes, and beliefs of neonatal nurses regarding neonatal palliative care. However, no study has investigated the need for neonatal nurse education in neonatal palliative care in Taiwan. OBJECTIVE: The purpose of this study was to explore neonatal nurses' experiences in caring for dying neonates and their educational backgrounds regarding palliative care, as well as to assess their educational needs. METHODS: A cross-sectional survey was used for this research. A research structural questionnaire was used to investigate the research goals. RESULTS: One hundred fifteen nurses participated in this survey. Few participants indicated having received neonatal palliative care education (13%), but most responded that palliative care is necessary in neonatal nursing education (97.4%). Participants also responded that they were often or always exposed to death in NICU (62.6%), but few reported providing pain management to dying neonates (8.7%) and few had experience providing symptomatic care for dying neonates (19.1%). Fifty percent ranked "pain control" as the area in which they most required training. Another high-ranked need was in discussing with parents and families the outcomes of CPR and their neonate's progress. CONCLUSION: Research indicates that the education currently provided to neonatal nurses does not meet their distinctive needs. Neonatal nurses in Taiwan expressed an urgent desire for training in pain control and communication. Research suggests that the most important topics to trainees are pain management and end-of-life communication. Additionally, non-pharmacological pain control interventions are valuable and should be included in an educational program. PMID:23683813
Peng, Niang-Huei; Chen, Chao-Huei; Huang, Li-Chi; Liu, Hsin-Li; Lee, Min-Chun; Sheng, Ching-Ching
Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (kappa 0.33) and 36% (kappa 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored. PMID:18755830
Agar, M; Currow, D C; Shelby-James, T M; Plummer, J; Sanderson, C; Abernethy, A P
Purpose. Predicting prognosis in advanced cancer aids physicians in clinical decision making and can help patients and their families to prepare for the time ahead. Materials and Methods. This multicenter, observational, prospective, nonrandomized population-based study evaluated life span prediction of four prognostic scores used in palliative care: the original Palliative Prognostic Score (PaP Score), a variant of PaP Score including delirium (D-PaP Score), the Palliative Performance Scale, and the Palliative Prognostic Index. Results. A total of 549 patients were enrolled onto the study. Median survival of the entire group was 22 days (95% confidence intervals [95% CI] = 19–24). All four prognostic models discriminated well between groups of patients with different survival probabilities. Log-rank tests were all highly significant (p < .0001). The PaP and D-PaP scores were the most accurate, with a C index of 0.72 (95% CI = 0.70–0.73) and 0.73 (95% CI = 0.71–0.74), respectively. Conclusion. It can be confirmed that all four prognostic scores used in palliative care studies accurately identify classes of patients with different survival probabilities. The PaP Score has been extensively validated and shows high accuracy and reproducibility in different settings.
Scarpi, Emanuela; Pittureri, Cristina; Martini, Francesca; Montanari, Luigi; Amaducci, Elena; Derni, Stefania; Fabbri, Laura; Rosati, Marta; Amadori, Dino; Nanni, Oriana
Widespread acceptance of hospice in the United States has contributed to increased public and professional interest in improved care, not only for dying persons, but for persons undergoing treatment for conditions that may not pose an immediate threat to their life. 'Palliative care' has been brought into use to denote care that covers a broader category of patients who do not necessarily have a medical condition that is not, at present, life threatening. The use of two related and overlapping terms by health care professionals is confusing and, in the absence of clear definitions, has contributed to needless controversy. Hospice has a specific meaning in the United States. Palliative care, once used as a euphemism for hospice, now has several meanings. This paper is designed to explore the historical evolution of both terms and to reduce the confusion and controversy surrounding their current application. PMID:14640357
Lamers, William M
Background The number of palliative care patients who live at home and have non-curable life-threatening diseases is increasing. This\\u000a is largely a result of modern palliative care techniques (e.g. specialised out-of-hospital palliative medical care services),\\u000a changes in healthcare policy and the availability of home care services. Accordingly, pre-hospital emergency physicians today\\u000a are more likely to be involved in out-of-hospital emergency treatment
Christoph H. R. Wiese; Utz E. Bartels; Karolina Marczynska; David Ruppert; Bernhard M. Graf; Gerd G. Hanekop
For those facing progressive life limiting disease, symptoms across a range of systems can be problematic. Clinicians may find themselves prescribing from several classes of drugs to alleviate distressing problems and to maximise quality of life for patients. Many drugs used for symptom control in palliative care give rise to neuro- psychiatric side effects as they affect the central nervous
N Jackson; J Doherty; S Coulter
|Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining…
Boss, Renee D.
A small but clinically significant proportion of dying patients experience severe physically or psychologi- cally distressing symptoms that are refractory to the usual first-line therapies. Anesthesiologists, currently poorly represented in the rapidly evolving specialties of hospice and palliative medicine, are uniquely quali- fied to contribute to the comprehensive care of patients who are in this category. Anesthesiologists' interper- sonal capabilities
Perry G. Fine
What are the ethical responsibilities of the medical staff (doctors, nurses, social workers, and chaplains) regarding the preservation of meaningful life for their patients who are approaching the end of life (EOL)? In particular, what is the staff's ethical responsibility to initiate a conversation with their patient regarding palliative care? By subjecting traditional Jewish teachings to an ethical analysis and then exploring the underlying universal principles, we will suggest a general ethical duty to inform patients of the different care options, especially in a manner that preserves hope. The principle that we can derive from Jewish bioethics teaches that the medical staff has a responsibility to help our patients live in a way that is consistent with how they understand their task or responsibility in life. For some patients, the best way to preserve a meaningful life in which they can fulfill their sense of purpose in the time that remains is to focus on palliation. For this reason, although palliative and supportive care are provided from the time of diagnosis, it is critical we make sure our patients realize that they have the opportunity to make a decision between either pursuing additional active treatments or choosing to focus primarily on palliative therapies to maximize quality of life. The Jewish tradition and our experience in spiritual care suggest the importance of helping patients preserve hope while, simultaneously, honestly acknowledging their situation. Staff members can play a vital role in helping patients make the most of this new period of their lives. PMID:23089233
Schultz, Michael; Bar-Sela, Gil
An analysis of the music therapy literature yields numerous reports to support the role of music in the alleviation of pain in palliative care. Four theoretical perspectives that support why many patients report reduced pain sensation after music therapy include: the psychological relationship between music and pain; the psychophysiological theory; spinal mechanisms involved in pain modulation; and the role of
Clare C. O’Callaghan
While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field. PMID:19001106
Davies, Betty; Larson, Judith; Contro, Nancy; Reyes-Hailey, Carlos; Ablin, Arthur R; Chesla, Catherine A; Sourkes, Barbara; Cohen, Harvey
Aim: This study aimed to explore the experiences of patients with severe heart failure and identify their needs for palliative care. Method: A qualitative design was chosen. Semi- structured interviews were used for data collection and patients were interviewed in their homes. The sample consisted of 20 patients with a confirmed diagnosis of heart failure. Patients were between 60 and
Gillian Horne; Sheila Payne
The last 3 years have witnessed an enormous growth and utilization of the Internet and its graphical subdivision, the World Wide Web (WWW). Its medical applications offer numerous advantages and strengths, including ease of publication and access to large volumes of information. This paper explores the potential applications of the Internet and the WWW for palliative care and hospice. It
|Examines feasibility of palliative approach for all patients, showing reasonable people may refuse even the most exemplary care for themselves or an incompetent relative. Medical realities and alleviation of pointless suffering necessitate that policymakers consider other options, including "active" euthanasia, consistent with patient autonomy…
Logue, Barbara J.
Between October 2001 and May 2002 the Chairperson and Vice-Chairperson of each Multicentre Research Ethics Committee (MREC) in England, Wales and Scotland took part in a semi-structured interview to ascertain the attitudes of MRECs to palliative care research. Interviews were transcribed and analysed using a grounded theory approach. Most respondents said each protocol was reviewed on its own merits, according to broad ethical principles, but were equivocal as to whether palliative care protocols posed particular or different challenges compared to those from other specialties. Respondents said they reviewed only a small number of palliative care protocols, and that they were less experienced with some of the study methods utilized, particularly qualitative designs. Four main themes emerged from the analysis. Respondents expressed concerns about the protocol itself--in regard to safeguarding the principles of autonomy and justice. There were concerns about how the research would be carried out, especially the protection of patients and the influence and input of the researcher in the process. The third theme concerned the impact of the research on the participant, particularly intrusion, potential distress and the existence of support mechanisms. Fourthly, respondents identified patient groups receiving palliative care (children, the elderly, bereaved families, patients in intensive therapy units, and those from ethnic groupings), who they considered might be particularly vulnerable. PMID:14526880
Stevens, Tony; Wilde, David; Paz, Silvia; Ahmedzai, Sam H; Rawson, Angela; Wragg, Dawn
The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care. PMID:22773483
Trovo de Araújo, Monica Martins; da Silva, Maria Júlia Paes
Context Palliation in patient care is under-utilized in part because many patients have insufficient knowledge about this management option. Information technology can improve awareness by providing access to numerous sources of trustworthy information. Evidence Acquisition To estimate what a patient interested in palliation might find online, online resources were searched in July 2010, using terms relevant to palliation. PubMed was searched for publications relevant to discussed topics. Evidence Synthesis Search engines returned vast numbers of hits, and identifying trustworthy sites was difficult. Products judged as trustworthy were classified as information, decision tool, or extended interaction tool. Sites with useful educational material were relatively plentiful; decision guides and interactive tools were much rarer. Available consumer informatics did not address well some terminal illnesses, and some subpopulations such as children, nor was there sufficient attention to literacy levels or principles of instructional design. Online or published information about usage numbers, effectiveness, and cost/benefit considerations was scant. Many sectors, including commercial, government, healthcare, research, and wellness/advocacy groups, have created consumer informatics for palliation. Conclusions Online information about palliation is available, although identifying trustworthy sources can be problematic. General information sites are relatively plentiful, but more tools for decision making, and interaction would increase value of web resources. More attention to literacy levels, instructional principles, and needs of special populations would improve products. Research to measure usage of such tools, ability to influence behavior, and cost/benefit issues is needed.
Corn, Milton; Gustafson, David H.; Harris, Linda M.; Kutner, Jean S.; McFarren, Ann E.; Shad, Aziza T.
Supportive and palliative care is an interdisciplinary challenge with the aims of symptom relief and improvement of quality of life in end-stage patients. Main complaints of patients with advanced nonmalignant lung disease are depression and anxiety, dyspnea, pain, and coughing. The discomfort of many physicians, caregivers, and family members with discussions about end-of-life care is one obstacle for the timely
Michael Kreuter; Felix J. F. Herth
BACKGROUND: Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP) in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's \\
Jennifer J Tieman; Amy P Abernethy; Belinda S Fazekas; David C Currow
The work of palliative day care extends the philosophy and practice of palliative care to patients in the community. It supports the needs of patients who have a diminished ability to fulfil their family and societal roles. The extent to which these aims reflect current practice, however, has not been fully assessed, particularly in Australia. There is also a lack of research on patients' experiences of palliative day care. The key aim of this study was, therefore, to explore patients' experiences of palliative day care in a Western Australian context. Eight patients (two males and six females) with ages ranging from 44 to 82 years were interviewed. Four broad themes emerged from the data, related to patients' experiences: being bounded physically; temporally; and socially; and the role of palliative day care in supporting patients. This study highlighted the potential for palliative day care to provide a therapeutic community space. Implications of these findings for palliative day care are discussed. PMID:18414335
Fisher, Colleen; O'Connor, Moira; Abel, Kaye
The primary aim of this study was to explore the changes in medical/nursing care in patients who transferred from a palliative care team (PCT) to a palliative care unit (PCU) in the same hospital, and to explore the reasons why new or modified interventions were required. This was a retrospective study of 50 consecutive patients who were transferred from PCT to PCU in a 750-bed general hospital. A trained nurse performed a chart review and recorded the changes in 1) medical/nursing care, 2) help with decision-making within 48 hours after PCU admission, and 3) documentation of family and psycho-existential care. Group discussions among PCT and PCU staff members explored the potential reasons for the changes. Five patients were excluded due to admission periods of shorter than 48 hours. The number of new/modified medical and nursing care interventions after PCU admission averaged 1.9 +/- 1.5 and 1.5 +/- 1.3 per patient, respectively. The most common medical treatments were: reduction in hydration volume, dose titration of opioids, change in opioid administration device, opioid rotation, and addition of NSAIDs and steroids. The most common nursing interventions were: allowing patient to take a bath, changing mattress, use of massage, and discontinuation of bronchial suctioning. In addition, PCU staff newly coordinated opportunities to discuss preferred end-of-life care with primary caregivers in 38% of the cases, family members other than primary caregivers in 16%, and patients in 6.7%. The chart documentation of family care and psycho-existential care increased considerably after PCU admission. The chief reasons for these changes were: under-recognition of the problems and unavailability of treatments (pharmacological treatments), no intention to intervene and recommendations not followed by primary physicians (rehydration therapy), no intention to intervene (nursing care), and no intention to intervene and under-recognition of the problems (help with decision-making). These data demonstrate that many patients under PCT consultation receive new or modified interventions after PCU admission. Potentially useful strategies to strengthen the PCT interventions are: modification of intervention structure to minimize under-recognition of symptoms and decision making problems (e.g., use of standardized assessment tools, regular conferences), changes in the health care system to allow unlicensed drugs, clinical studies to clarify the benefits of artificial hydration therapy, and greater efforts to intervene in the areas of nursing care, help with decision making, family care, and psycho-existential care. PMID:15963868
Morita, Tatsuya; Imura, Chizuru; Fujimoto, Koji; Shishido, Hideki; Tei, Yo; Inoue, Satoshi
This article focuses on patients with cancer during the terminal phase. It deals with the care that individuals need after trying to seek health solutions in different hospitals when the disease is deemed incurable and they then require palliative care (PC) to obtain welfare and assist them to die. In the Spanish health system these patients are cared for in palliative care units or services. The main objective of palliative care is to give comfort. Comforting is destined to alleviate and support patients and families during the process of health / disease / care / patient death. During this period, it is important to care for the ailing body. Similarly, when a disease is incurable, the pain and suffering runs its inexorable course and leaves perceptible traces. These signs can be an indication that death is nigh. Although scientific advances have produced positive results in the control of pain, in some cases there are critical moments when situations of misery and despair arise for the terminal patients. PMID:23989559
Getino Canseco, María
Background Improving palliative care is a public health priority. However, little is known about the views of public health experts regarding the state of palliative care in Germany and the challenges facing it. The main aim of this pilot study was to gather information on the views of internationally experienced public health experts with regard to selected palliative care issues, with the focus on Germany, and to compare their views with those of specialist palliative care experts. Qualitative guided interviews were performed with ten experts (five from palliative care, five from public health). The interviews were analysed using qualitative content analysis. Findings Older people and non-cancer patients were identified as target groups with a particular priority for palliative care. By contrast to the public health experts, the palliative care experts emphasized the need for rehabilitative measures for palliative patients and the possibilities of providing these. Significant barriers to the further establishment of palliative care were seen, amongst other things, in the powerful lobby groups and the federalism of the German health system. Conclusion The findings suggest that from the experts' point of view (1) palliative care should focus on the needs of older people particularly in view of the demographic changes; (2) more attention should be paid to rehabilitative measures in palliative care; (3) rivalries among different stakeholders regarding their responsibilities and the allocation of financial resources have to be overcome in Germany.
Behmann, Mareike; Luckmann, Sara Lena; Schneider, Nils
Wound management in palliative patients is often a very challenging area of care. There are many unique issues that can combine to produce complicated wound management scenarios, including the types of wounds and wound symptoms most commonly affecting palliative care patients, as well as the presence of concurrent disease and associated treatment. Problems exist with the availability of suitable dressings and balancing life expectancy with the goals of wound care. A significant, and possibly under-recognized, issue is the emotional and social distress experienced by these patients, which can be directly attributed to their wound. These problems must all be recognized and addressed in order to manage wounds effectively in this patient population. This article aims to explore these issues and offer advice on the management of wound-related symptoms, with the ultimate goal of improving patients' quality of life. PMID:16471044
Naylor, Wayne A
Increasingly, palliative care is being referred to as an essential programme and in some cases as a human right. Once it is recognized as such, it becomes part of the lexicon of social justice in that it can be argued that all members of society should have access to such care. However, this begs the question of how that care should be enacted, particularly in rural and remote areas. This question illustrates some of Friedrich Hayek's critiques of social justice. Hayek has likened social justice to a 'moral stone' arguing that social justice is meaningless to the extent that society is impersonal and as such cannot be just, only those individuals who make up that society can be just. When responsibility for justice is assigned to an impersonal society, ideas of social justice can become a clarion call for whom no one is directly accountable. This opens the door for questionable macro-level political agendas that have no capacity to enact the ideal, and worse, may suppress individual moral acts towards the desired end. Further, acts of interference at the macro level with the ideal of equal opportunity run the risk of disadvantaging other members of society. Instead, he has argued that a better approach lies in finding ways to induce and support individual moral acts that promote the human good. Hayek's arguments are particularly compelling for rural palliative care. In this paper we draw upon data from an ethnographic study in rural palliative care to illustrate the potential misfit between the ethical ideal of palliative care as expressed by rural participants and the narratives of social justice. PMID:22176547
Pesut, Barbara; Beswick, Frances; Robinson, Carole A; Bottorff, Joan L
ObjectiveTo explore how transitions to a palliative care approach are perceived to be managed in acute hospital settings in England.DesignQualitative study.SettingSecondary or primary care settings in two contrasting areas of England.Participants58 health professionals involved in the provision of palliative care in secondary or primary care.ResultsParticipants identified that a structured transition to a palliative care approach of the type advocated in
Merryn Gott; Christine Ingleton; Michael I Bennett; Clare Gardiner
Background Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP) in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's "grey" palliative care literature and identifying international published literature missing from the electronic indexing systems. The literature was then catalogued and made publicly available through the CareSearch website. Results To date over 2,500 items have been included in the CareSearch database and can be accessed and searched through a publicly available website. Nearly 2,000 items are conference abstracts and 178 are theses or government, organisational and planning documents. A further 410 items relate to articles from palliative journals that are not indexed on a major bibliographic database. The website also provides tools and facilities to support palliative care practice and research. Conclusion CareSearch is a new evidence resource for palliative practitioners, educators and researchers. The palliative community now has access to a more comprehensive literature base as well as a resource that supports the integration of knowledge into practice. This specialised data repository enables users to access information on the body of work that has shaped palliative care development and prevents the potential loss or duplication of research work. It also provides a template for other emerging disciplines to use in capturing their literature and evidence.
Tieman, Jennifer J; Abernethy, Amy P; Fazekas, Belinda S; Currow, David C
Abstract Background: Palliative care clinicians confront suffering as they care for people living with life-limiting conditions. When the degree of suffering becomes unjustified, moral distress can ensue. Promising work from neuroscience and social psychology has yet to be applied to clinical practice. Objective: Our objective was to expand a social psychology model focusing on empathy and compassion in response to suffering to include an ethical dimension and to examine how the interrelationships of its proposed components can assist clinicians in understanding their responses to morally distressing situations. Analysis: In the clinical context, responses to distressing events are thought to include four dimensions: empathy (emotional attunement), perspective taking (cognitive attunement), memory (personal experience), and moral sensitivity (ethical attunement). These dynamically intertwined dimensions create the preconditions for how clinicians respond to a triggering event instigated by an ethical conflict or dilemma. We postulate that if the four dimensions are highly aligned, the intensity and valence of emotional arousal will influence ethical appraisal and discernment by engaging a robust view of the ethical issues, conflicts, and possible solutions and cultivating compassionate action and resilience. In contrast, if they are not, ethical appraisal and discernment will be deficient, creating emotional disregulation and potentially leading to personal and moral distress, self-focused behaviors, unregulated moral outrage, burnout, and secondary stress. Conclusion: The adaptation and expansion of a conceptual framework offers a promising approach to designing interventions that help clinicians mitigate the detrimental consequences of unregulated moral distress and to build the resilience necessary to sustain themselves in clinical service. PMID:23777328
Rushton, Cynda H; Kaszniak, Alfred W; Halifax, Joan S
Community palliative care nurses in Perth have joined the throng of healthcare workers relying on personal digital assistants (PDAs) to store, access and send client information in 'real time'. This paper is guided by Heidegger's approach to technologies and Habermas' insights into the role of law in administering social welfare programs to reveal how new ethical and legal understandings regarding patient information add to nursing's professional responsibilities. This qualitative research interprets data from interviews with twenty community palliative care nurses about clients' legal rights to informational privacy and confidentiality. It explores nurses' views of their nursing responsibilities regarding clients' legal rights, liability issues, bureaucratic monitoring and enforcement procedures. It concludes that nurses and clients are construed as legal subjects entrenched in legal relations that have magnified since these nurses began using PDAs in 2005/2006. PMID:23134278
This article emphasizes the shifting paradigm of palliative care from cancer patients to vital organ failure in chronic diseases. It offers a view about a type of palliative care for patients reaching the pre-terminal phase of a chronic illness. Unlike cancer patients, time is not as sharply delineated and physical pain is not a major factor, but psychological distress is often a major component of the clinical condition. Starting from the perspective of a psychiatric consultant on medical and surgical wards, I present short clinical vignettes to introduce a discussion about psychological manifestations in patients with chronic vital organ failure. The objective is to help patients find meaning to the last stage of their life. To that effect, four key sensitive areas are presented for clinicians to assess end-of-life coping: pressure on character organization, the management of hope, mourning problems, and ill health as a screen for psychological distress. PMID:22935080
The Human Rights Watch organization has written this report, which talks about the difficulties faced by patients in major cancer hospitals across India. Released in October 2009, this 102-page report takes an investigative look into the pain treatment situation in these hospitals. The report identifies three key obstacles to improving the availability of pain treatment and palliative care, including restrictive drug regulations and the failure to train doctors about pain treatment methods. Visitors will find that the report is divided into several major sections including "Palliative Care and Pain Treatment in India" and "The Plight of Patients". Additionally, interested parties can also view the appendices attached to the report. An online slide show and a video feature round out the site.
Palliative care patients are highly prothrombotic, yet there are no national guidelines for the prevention of venous thromboembolism (VTE). A survey was undertaken to explore thromboprophylaxis practice within British palliative care inpatient units and whether it changed over 5 years in keeping with emerging evidence. A descriptive semistructured telephone survey was conducted in April, 2000 and March, 2005 to explore
Simon I. R. Noble; Ilora G. Finlay
An Expert Working Group was convened under the auspices of the Steering Committee of the Research Network of the European Association of Palliative Care to review the status of the use of pain measurement tools (PMTs) in palliative care research conducted in a multilingual- multicenter setting. Based on a literature review and on the experts' opinion, the present work recommends
Augusto Caraceni; Nathan Cherny; Robin Fainsinger
The culture of pediatric intensive care units (PICUs) is focused on curative or life-prolonging treatments for seriously ill children. We present empirically-based approaches to family-centered palliative care that can be applied in PICUs. Palliative care in these settings is framed by larger issues related to the context of care in PICUs, the stressors experienced by families, and challenges to palliative care philosophy within this environment. Innovations from research on family-centered communication practices in adult ICU settings provide a framework for development of palliative care in PICUs and suggest avenues for social work support of critically ill children and their families.
DOORENBOS, ARDITH; LINDHORST, TARYN; STARKS, HELENE; AISENBERG, EUGENE; CURTIS, J. RANDALL; HAYS, ROSS
The University of Notre Dame Australia’s Sydney Campus has joined with The University of New South Wales (UNSW) to help establish a multidisciplinary academic centre in palliative care.\\u000aThis recently launched facility, the Cunningham Centre, will also be supported by St Vincents and Mater Health Sydney (SV&MHS) and the NSW Cancer Institute.\\u000aIt will be based at the Sacred Heart
Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.
Kumar, Senthil P
For those facing progressive life limiting disease, symptoms across a range of systems can be problematic. Clinicians may find themselves prescribing from several classes of drugs to alleviate distressing problems and to maximise quality of life for patients. Many drugs used for symptom control in palliative care give rise to neuropsychiatric side effects as they affect the central nervous system either directly or indirectly. The common unwanted effects of these drugs are well known, but there are some important neuropsychiatric effects that physicians are less aware of. If unrecognised, these effects can generate considerable distress and unnecessary harm to patients. We aim to highlight some of the adverse neuropsychiatric effects which occur with commonly used drugs in palliative care. Antiemetics such as metoclopramide and haloperidol can cause significant levels of neuropsychiatric toxicity, as can opiates, antidepressants, anxiolytics and antipsychotics. The syndromes or entities that will be considered are delirium, drug induced parkinsonism, akathisia, serotonin syndrome and neuroleptic malignant syndrome. The intention is to alert clinicians to the iatrogenic complications which may ensue on prescribing drugs commonly used in the palliative care setting. PMID:18372482
Jackson, N; Doherty, J; Coulter, S
There is a clear recognition of the relationship between thrombosis and neoplastic diseases. In recent years, there have been a few reports dealing with some of the features of clinical progression and management of venous thromboembolism (VTE) in palliative care patients. In this report, we present four cases that describe some of the diverse aspects of this clinically challenging area to illustrate the symptom and quality of life issues for patients, and the management challenge for palliative care clinicians. Perhaps the most important issue in the palliative care setting is the need to balance the inconvenience of the various diagnostic and therapeutic options, particularly in settings where progression has resulted in a deteriorated physical and cognitive condition. We need to recognize that VTE does cause significant problems for some of our patients. We will always need to balance issues of life expectancy, comfort and quality of life, and risk and benefits of anticoagulation, and align these problems with the individual patient, and the family dynamics and desires we encounter. PMID:15332474
Kirkova, Jordanka; Fainsinger, Robin L
This study describes emergency physicians' perspectives on the challenges and benefits to providing palliative care in an academic, urban, public hospital in Los Angeles. Participants underwent a semi-structured interview on their training and experiences related to palliative care, perceptions of providing palliative care, and their recommendations for education and training in this area. Overall, respondents felt that palliative care is not prioritized appropriately, leading patients to be unaware of their options for end-of-life care. Providing educational materials and courses that have been developed from the ED perspective should be included in ongoing continuing medical education. Having a palliative care team that is responsive to the needs of the ED will further enhance collaboration with the ED. Future research should focus on understanding the range of benefits to having palliative care in the ED. PMID:22136262
Stone, Susan C; Mohanty, Sarita; Grudzen, Corita R; Shoenberger, Jan; Asch, Steve; Kubricek, Katrina; Lorenz, Karl A
The U.S. Department of Veterans Affairs (VA) has been a leader in program development and service delivery in the areas of geriatrics, hospice and palliative care for decades. Zelda Foster, MSW, serving as the Chief of Social Work Services at the Brooklyn VA Hospital for almost 20 years, was a force in the early days of the palliative care and hospice movement in the United States, publishing a seminal article in 1965, and contributing through educational initiatives, program development, information dissemination and mentorship of countless social workers. With an early recognition of the demographic imperative of aging veterans, the VA established a number of innovative programs which have been widely replicated outside of the VA. Zelda Foster was a central figure in the evolution of these programs and a strong and effective advocate for the inclusion of social workers. She deserves much credit for the fact that social workers are now centrally involved in an array of leadership activities in palliative and end-of-life care both within and outside of VA. PMID:18072661
Daratsos, Louisa; Howe, Judith L
Currently about 25% of Americans die in nursing homes, many with poorly controlled pain and other symptoms, with minimal provisions for psychosocial support. New models are necessary to lessen structural and process barriers to give effective end-of-life care in nursing homes. Objectives: 1) To extend hospital-based Bioethics Consultation Services (BCS) and Palliative Care Services (PCS) at Montefiore Medical Center (MMC)
Purpose: We sought to characterize the aggregate features and survival of patients who receive inpatient palliative care consultation, particularly focusing on patients with cancer, to identify opportunities to improve clinical outcomes. Methods: We reviewed prospectively collected data on patients seen by the Palliative Care Inpatient Consult Service at Mayo Clinic (Rochester, MN) from January 2003 to September 2008. Demographics, consultation characteristics, and survival were analyzed using Kaplan-Meier survival curves and Cox survival models. Results: Cancer was the most common primary diagnosis (47%) in the 1,794 patients seen over the 5-year period. A significant growth in the annual number of palliative care consultations has been observed (113 in 2003 v 414 in 2007), despite stable total hospital admissions. Frequently encountered reasons for consultation included clarification of care goals (29%), assistance with dismissal planning (19%), and pain control (17%). Although patients with cancer had the highest median survival after consultation in this cohort versus patients with other diagnoses, we observed a 5-year trend of decreasing survival from admission to death and from consultation to death. Median time from admission to death for patients with cancer was 36 days in 2003 and only 19 days in 2008 (P < .01). Median time from consultation to death decreased from 33 days in 2003 to only 11.5 days in 2008 (P < .01). Conclusion: Patients with cancer often have complex needs that must be met within a short window for intervention. We highlight opportunities for improved multidisciplinary care for patients with advanced cancer and their families, including opportunity for earlier palliative care involvement, even in the outpatient setting.
Kamal, Arif H.; Swetz, Keith M.; Carey, Elise C.; Cheville, Andrea L.; Liu, Heshan; Ruegg, Suzanne R.; Moynihan, Timothy J.; Sloan, Jeff A.; Kaur, Judith S.
Resilience has been described as a 'universal capacity which allows a person, group or community to prevent, minimise or overcome damaging effects of adversity' (Newman 2004). It is not just about re-forming but about the possibil- ity of growth. We believe that the concept of resilience is important to the future delivery of end of life care and the significant
Barbara Monroe; David Oliviere
Constipation is a common problem with a considerable negative impact on quality of life in patients who receive palliative care. Over 35% of patients with heart failure, chronic obstructive pulmonary disease or cancer have constipation. In the palliative phase constipation often has multiple causes. Treatment of constipation consists of both medical treatment with laxatives and non-medical treatment. A specific recommendation for the use of laxatives cannot be made because of the lack of comparative trials. The choice of what laxative to use can only be made on the basis of clinical experience, mechanism of action, personal preference of the patient and costs. Prophylactic use of laxatives is indicated to prevent constipation when initiating constipation inducing medication such as opioids. In treatment-resistant constipation prucalopride, colchicine or misoprostol may be effective. Opioid-antagonists such as naloxone and methylnaltrexone are effective in patients with persistent opioid-induced constipation despite the use of laxatives. PMID:21176258
de Groot, Jan Willem B; Peters, Frans T M; Reyners, Anna K L
This article is a sequel to 'Spirituality in palliative care: what language do we need?' (Byrne, 2002). It looks at the language of pastoral care, its place in palliative settings and how it is regarded by patients and carers. Spirituality and spiritual need is multifaceted, and the various beliefs regarding the concept of spirituality and the spiritual needs of terminally ill patients are appraised, and the methods of spiritual assessment reviewed. The role of the chaplain in spiritual care is also assessed, and an ability to move beyond the boundaries of their own denominational position addressed. Several components of the language of pastoral care are identified. PMID:17505404
In end-of-life care, attending to spiritual needs ensures that a dying patient has the opportunity to find meaning in the midst of suffering and to have the opportunity for love, compassion, and partnership in their final journey. This article summarizes some of the beliefs and traditions from Judaism, Islam, and Christianity that affect people as they face their own dying and mortality. People who do not participate in any formal religion also have a drive to find meaning in the midst of suffering and dying. They may find this in personal ways. This article presents some practical tools to help clinicians address and respect spiritual and religious issues of patients. It is crucial that our culture and our systems of care for the dying include a spiritual approach so that dying can be meaningful and even filled with hope. PMID:15541620
Puchalski, Christina M; Dorff, Rabbi Elliot; Hendi, Imam Yahya
Background:There are intriguing and challenging ethical dilemmas in the practice of palliative care in a traditional developing society.Objective:To review the different ethical issues involved in cancer and palliative care in developing countries, with special reference to India.Methods:Published literature on pain relief and palliative care in the developing countries was reviewed to identify ethical issues and dilemmas related to these, and
S K Chaturvedi
Community children's nursing services are well placed to provide palliative care for children and young people living with life-limiting conditions. The provision of home support can make a real difference to the quality of life for these families. Yet families report that services are fragmented and difficult to access. The range of professionals involved in the care of a child with life-limiting conditions can be daunting for both the child and the family. The key worker role has been identified as advantageous in co-ordinating care. The community children's nursing team is in a prime position to take on this role. Best practice is achieved through an integrated approach to service provision. PMID:16926731
Maunder, Eryl Zac
More than 25,000 infants and children die in US hospitals annually; 86% occur in the NICU or PICU. Parents see the child’s pain and suffering and, near the point of death, must decide whether to resuscitate, limit medical treatment and/or withdraw life support. Immediately after the death parents must decide whether to see and/or hold the infant/child, donate organs, agree to an autopsy, make funeral arrangements, and somehow maintain functioning. Few children and their families receive pediatric palliative care services, especially those from minority groups. Barriers to these programs include lack of services, difficulty identifying the dying point, discomfort in withholding or withdrawing treatments, communication problems, conflicts in care among providers and between parents and providers, and differences in cultural beliefs about end-of-life care. The 2011 NIH Summit on the Science of Compassion provided recommendations in family involvement, end-of-life care, communication, health care delivery, and transdisciplinary participation.
Youngblut, JoAnne M.; Brooten, Dorothy
Objectives To assess the educational offerings provided to psychiatry residents in palliative care as well as their concomitant interest in learning more about this subspecialty. To measure the pre- and post-levels of competence, concern, and knowledge exhibited by psychiatry residents when completing a formalized clinical rotation in hospice and palliative care, with additional comparisons to family and internal medicine residents completing the same clinical rotation. Methods Fifty-two Psychiatry Program Directors and 98 psychiatry residents completed an online survey assessing the current course offerings and level of interest in palliative care. Thirty psychiatry residents were additionally evaluated before and after completion of a clinical rotation in hospice and palliative care. Results Few programs offered any formalized training in palliative care, although nearly all psychiatry residents reported interest in this area. A clinical rotation in palliative care significantly increased psychiatry residents’ competence and knowledge while simultaneously decreasing their concerns about practice in this area; most were at levels comparable to family and internal medicine residents completing the same rotation. Psychiatry residents’ knowledge of pain assessment, pain management, and generalized non-pain management were also enhanced during the rotation. Conclusions Results indicate that training opportunities in palliative care are lacking for psychiatry residents in the United States although residents report strong interest in this area. This study finds psychiatry residents can benefit as much as other disciplines from receiving palliative care training. The need to offer such training within psychiatry residencies is highlighted and the welcoming of psychiatrists into palliative care is suggested.
Irwin, Scott A.; Montross, Lori P.; Bhat, Reshma G.; Nelesen, Richard A.; von Gunten, Charles F.
Skype™, an Internet-based communication tool, has enhanced communication under numerous circumstances. As telemedicine continues to be an increasing part of medical practice, there will be more opportunities to use Skype and similar tools. Numerous scenarios in the lay literature have helped to highlight the potential uses. Although most commonly used to enhance physician-to-patient communication, there has been limited reported use of Skype for patient-to-family communication, especially in end of life and palliative care. Our inpatient Palliative Medicine Consultation Service has offered and used this technology to enhance our patients' quality of life. The objective was to provide another tool for our patients to use to communicate with family and/or friends, especially under circumstances in which clinical symptoms, functional status, financial concerns, or geographic limitations preclude in-person face-to face communication. PMID:22803591
Brecher, David B
Goal of work: To inform future practice, research and policy in specialist palliative day-care by sys- tematically reviewing the evidence for how the structure and process of this form of care relate to outcomes for adults with cancer. Patients and methods: Medical, nursing and social science computerized databases were searched up until December 2003 for studies of palliative day-care report-
Elizabeth Davies; Irene J. Higginson
Background. Development of a pediatric palliative care program was preceded by a needs assess- ment that included a staff survey and family interviews regarding improving pediatric palliative care. Methods. Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were
Nancy A. Contro; Judith Larson; Sarah Scofield; Barbara Sourkes; Harvey J. Cohen
|Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary…
Clemmer, Sarah J.; Ward-Griffin, Catherine; Forbes, Dorothy
A strong and often polarized debate has taken place during recent years concerning the consequences of dehydration in the terminally ill patient. When a patient has a severely restricted oral intake or is found to be dehydrated, the decision to administer fluids should be individualized and made on the basis of a careful assessment that considers problems related to dehydration, potential risks and benefits of fluid replacement, and patients' and families' wishes. This review discusses the assessment of hydration status in the terminal cancer patient and the options for fluid administration in the cases where evaluation of the patients' condition has led to this indication. These include different modes of hypodermoclysis, intravenous hydration, use of the nasogastric route, and proctoclysis. Arguments for and against rehydration have been previously addressed by other authors and fall outside the scope of this review. PMID:9686490
Steiner, N; Bruera, E
Purpose: External beam radiotherapy (RT) is commonly indicated for the palliation of symptomatic bone metastases, but there is evidence of underutilization of this treatment modality in palliative care for cancer populations. This study was conducted to investigate factors that influenced the use of palliative RT services at a regional comprehensive cancer center. Methods and Materials: A cohort of patients with radiographically confirmed bone metastases and first-time users of palliative RT between 2003 and 2005 was retrospectively reviewed from the time of initial diagnosis of bone metastases to death or last follow-up. Type of radiation treatment service provider used (rapid access or routine access) and patient-, tumor-, and treatment-related factors were analyzed for their influences on the number of treatment courses given over the duration of disease. Results: A total of 887 patients received 1,354 courses of palliative RT for bone metastases at a median interval of 4.0 months between courses. Thirty-three percent of patients required more than one RT course. Increased age and travel distance reduced the likelihood and number of treatment courses, while service through a rapid access clinic was independently associated with an increase in subsequent use of palliative RT. Conclusions: A rapid access service model for palliative RT facilitated access to RT. Travel distance and other factors remained substantial barriers to use of palliative RT services. The pattern of practice suggests an unmet need for symptom control in patients with bone metastases.
Wu, Jackson S.Y., E-mail: email@example.com [Department of Oncology, Division of Radiation Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Kerba, Marc [Department of Oncology, Division of Radiation Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Wong, Rebecca K.S. [Department of Radiation Oncology, Radiation Medicine Program, Princess Margaret Hospital, University of Toronto, Toronto, Ontario (Canada); Mckimmon, Erin [Radiation Treatment Program Management, Tom Baker Cancer Centre, Calgary, Alberta (Canada); Eigl, Bernhard [Department of Oncology, Division of Medical Oncology, Tom Baker Cancer Centre, University of Calgary, Calgary, Alberta (Canada); Hagen, Neil A. [Department of Oncology, Division of Palliative Medicine, Tom Baker Cancer Centre, and Department of Clinical Neurosciences and Medicine, University of Calgary, Calgary (Canada)
Healthcare in America continues to be of paramount importance, and one of the most highly debated public policy issues of our time. With annual expenditures already exceeding $2.4 trillion, and yielding less than optimal results, it stands to reason that we must turn to promising tools and solutions, such as information technology (IT), to improve service efficiency and quality of care. Presidential addresses in 2004 and 2008 laid out an agenda, framework, and timeline for national health information technology investment and development. A national initiative was long overdue. This report we show that advancements in both medical technologies and information systems can be capitalized upon, hence extending information systems usage beyond data collection to include administrative and decision support, care plan development, quality improvement, etc. In this paper we focus on healthcare services for palliative patients. We present the development and preliminary accounts of a successful initiative in the Medical Center of Central Georgia where footprints information technology was modified and integrated into the hospital's palliative care service and existing EMR systems. The project provides evidence that there are a plethora of areas in healthcare in which innovative application of information systems could significantly enhance the care delivered to loved ones, and improve operations at the same time.. PMID:21057887
Tsavatewa, Christopher; Musa, Philip F; Ramsingh, Isaac
The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality improvement, and demonstration of program impact to hospital administrators, private funders, and policymakers. To develop a set of core measures, CAPC convened a consensus panel in 2008 to focus on operational metrics for hospital inpatient palliative care units. Operational metrics, as distinct from clinical, customer, and financial metrics, describe the characteristics of patients admitted to an inpatient unit, such as age, disease, location, length of stay, and disposition. The panel arrived at 11 metric domains, all but one of which can be used for either internal programmatic use or for external comparisons of service characteristics/impact between different hospitals. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospitals are encouraged to collect and report outcomes for each of the 11 metric domains described here. PMID:19284258
Weissman, David E; Meier, Diane E
AIMS AND OBJECTIVES: To describe the process that nurses experienced in engaging with families in Malaysian palliative care settings and the challenges they faced. BACKGROUND: In palliative care settings, nurses and the terminally ill person's family members interact very closely with each other. It is important for nurses to work with families to ensure that the care of the terminally ill person is optimised. RESEARCH DESIGN: A qualitative design using grounded theory methods was used to describe how nurses engaged with families and the challenges they faced. METHODS: Twenty-two nurses from home care and inpatient palliative care settings across Malaysia participated in this study. Data were collected through seven interviews and eight focus group discussions conducted between 2007-2009. RESULTS: The main problem identified by nurses was the different expectations to patient care with families. The participants used the core process of Engaging with families to resolve these differences and implemented strategies described as Preparing families for palliative care, Modifying care and Staying engaged to promote greater consistency and quality of care. When participants were able to resolve their different expectations with families, these resulted in positive outcomes, described as Harmony. However, negative outcomes of participants not being able to resolve their different expectations with families were Disharmony. CONCLUSIONS: This study highlights the importance of engaging and supporting families of the terminally ill as well as providing a guide that may be used by nurses and carers to better respond to families' needs and concerns. RELEVANCE TO CLINICAL PRACTICE: The study draws attention to the need for formal palliative care education, inclusive of family care, to enable nurses to provide the terminally ill person and their family effective and appropriate care. PMID:23651099
Namasivayam, Pathma; Lee, Susan; O'Connor, Margaret; Barnett, Tony
In the Netherlands, the quality and availability of palliative care has improved markedly within the last decade. However, many open questions remain concerning the position of palliative care as an insurable product on the Dutch healthcare market. Therefore, we analysed the policies of all private Dutch healthcare insurance companies as well as the public insurance policy for extraordinary medical costs. We studied how and which parts of palliative care were reimbursed in 2007. We observed a huge variability in costs and reimbursement regulations reflecting a rapid turnover of products for palliative care due to various new developments on this specific field of medical care. We conclude that a better definition of the product 'palliative care' is necessary for patients, health care providers and insurance companies. PMID:19150578
Jansen, Wim J J; Vissers, Kris C P; Zuurmond, Wouter W A; van Montfort, Guus P W P; Rhebergen, Andre; Loer, Stephan A
Pain is the major source of anxiety and distress at the end of life, particularly in cases of end-stage cancer. However, pain management is not always effective or effectively implemented. This article identifies several barriers to effective pain relief in terminal cancer--the complexity of pain; difficulties in physical, emotional and spiritual assessment; difficulties in the delivery of medication--that challenge the skills of all professionals involved in palliative care. There are no simple answers, but awareness of the breadth of the issues may help focus nurses' minds on the patient in every encounter. PMID:16116395
Hemming, Laureen; Maher, David
Research into the value of music therapy in pediatric palliative care (PPC) has identified quality of life as one area of improvement for families caring for a child in the terminal stages of a life-threatening illness. This small-scale investigation collected data in a multisite, international study including Minnesota, USA, and Melbourne, Australia. An exploratory mixed method design used the qualitative
Kathryn J. Lindenfelser; Cherry Hense; Katrina McFerran
This bibliography on child day care services provides abstracts of 45 documents from the Project SHARE collection. The bibliography includes books, technical reports, journal articles, and a multimedia program. Most of the documents were published between...
This article describes the research strategy for the development of a computerized assessment tool as part of a European Union (EU)-funded project, the European Palliative Care Research Collaborative (EPCRC). The EPCRC is funded through the Sixth Framework Program of the EU with major objectives to develop a computer-based assessment and classification tool for pain, depression, and cachexia. A systematic approach will be applied for the tool development with emphasis on multicultural and multilanguage challenges across Europe. The EPCRC is based on a long lasting collaboration within the European Association for Palliative Care Research Network. The ongoing change in society towards greatly increased use of communication as well as information transfer via digital systems will rapidly change the health care system. Therefore, patient-centered outcome assessment tools applicable for both clinic and research should be developed. Report of symptoms via digital media provides a start for face-to-face communication, treatment decisions, and assessment of treatment effects. The increased use of electronic media for exchange of information may facilitate the development and use of electronic assessment tools and decision-making systems in oncology. In the future, patients may find that a combination of a face-to-face interview plus a transfer of information of subjective symptoms by electronic means will optimize treatment. PMID:18688054
Kaasa, Stein; Loge, Jon Håvard; Fayers, Peter; Caraceni, Augusto; Strasser, Florian; Hjermstad, Marianne Jensen; Higginson, Irene; Radbruch, Lukas; Haugen, Dagny Faksvåg
BackgroundAttempts to identify children who may have palliative care needs using standard ACT definitions identified ambiguity and differences in interpretation. A Delphi study developed definitions that would be acceptable to healthcare professionals and define children who may have palliative care needs to facilitate collection of a minimum dataset.MethodsTwo Delphi survey rounds, completed by 44 professionals with expertise in paediatric palliative
L A Brook; C Kerr; S Hawker
Upon completion of the chapter, the student will be able to:\\u000a \\u000a \\u000a \\u000a 1. \\u000a \\u000a Define palliative care and differentiate it from hospice care.\\u000a \\u000a \\u000a \\u000a \\u000a 2. \\u000a \\u000a Enumerate and understand the general rules of good doctor-patient communication including communicating bad news and advance\\u000a care planning.\\u000a \\u000a \\u000a \\u000a \\u000a 3. \\u000a \\u000a Identify and treat nonpain symptoms including dyspnea, cough, nausea and vomiting, constipation, diarrhea, bowel obstruction,\\u000a mouth symptoms, skin symptoms,
Rainier P. Soriano
Palliative care is a uniquely demanding field in that clinicians routinely address the complex needs of patients living with incurable illness. Due to their relative inexperience, medical learners completing a palliative care educational experience are particularly vulnerable to the stresses that are often encountered. To address this educational need, a structured Self-Care Module was developed for medical learners rotating through a palliative care clinical rotation. Components of this module include completion of a process recording exercise, a structured reflection, and participation in a facilitated group discussion. An examination of the acceptability, utility, and operational feasibility of the module demonstrated that 86% (n=35) of learners found the module helpful in reflecting on their clinical encounters, 86% (n=35) gained an appreciation for the importance of self-reflection and self-awareness as a component of self-care and 97% (n=35) gained a greater appreciation for sharing clinical experiences with other learners. This novel Self-Care Module was found to be a well accepted, useful, and operationally feasible educational experience for postgraduate and undergraduate learners completing a palliative care educational experience. PMID:23631613
Kim, Hyon C; Rapp, Elaine; Gill, Ashlinder; Myers, Jeff
The message of palliative care in India has become a movement in several parts of India in a short span of time. The past two decades have seen palpable changes in the mindset of health care providers, and policy makers with respect to the urgency in providing palliative care. With a population of over a billion spread over a vast geo-political mosaic, the reach and reliability of palliative care programmes may appear staggering and insurmountable. Nonetheless we have reasons to be proud in that we have overcome several hurdles and is presently in a ‘consolidation mode’. It is only a matter of time before the ‘aam admi’ has access to good palliative care. Easing narcotic licensing procedures, creation of standard operating procedures for morphine availability and the passing of the ‘Palliative Care Policy’ by the Government of Kerala are commendable milestones. We are today having more of ‘silver linings’ and less of ‘dark clouds’.
Despite substantial evidence that patients with cancer commonly have significant psychosocial problems, for which we have evidence-based treatments, many patients still do not receive adequate psychosocial care. This means that we risk prolonging life without adequately addressing the quality of that life. There are many challenges to improving the current situation, the major one of which is organizational. Many cancer centers lack a system of psychosocial care that is integrated with the cancer care of the patient. Psychosocial care encompasses a range of problems (emotional, social, palliative, and logistical). The integration must occur with the cancer care of the patient at all stages (from screening to palliative care) and across all clinical sites of care (inpatient and outpatient cancer services as well as primary care). In this article, we consider the challenges we face if we are to provide such integrated psychosocial services. We focus on the collaborative care service model. This model comprises systematic identification of need, integrated delivery of care by care managers, appropriate specialist supervision, and the stepping of care based on systematic measurement of outcomes. Several trials of this approach to the management of depression in patients with cancer have found it to be both feasible to deliver and effective. It provides a model for services to meet other psychosocial needs. We conclude by proposing the key components of an integrated psychosocial service that could be implemented now and by considering what we need to do next if we are to succeed in providing better and more comprehensive care to our patients. PMID:22412139
Fann, Jesse R; Ell, Kathleen; Sharpe, Michael
Background During the last stage of life, palliative care patients often experience episodes of respiratory distress, bleeding, pain or seizures. In such situations, caregivers may call emergency medical services leading to unwanted hospital admissions. The study aims to show the influence of our palliative care team to reducing emergency calls by cancer patients or their relatives during the last six month of life. Methods Fifty relatives of deceased patients who had been attended by our palliative care team were randomly selected. Data was obtained retrospectively during a structured interview. In addition to demographic data, the number of emergency calls made during the final six months of the patient's life, the reason for the call and the mental compound score (MCS-12) of the caregivers was registered. Results Forty-six relatives agreed to the interview. Emergency calls were placed for 18 patients (39%) during the final six months of their lives. There were a total of 23 emergency calls. In 16 cases (70%) the patient was admitted to the hospital. Twenty-one (91%) of the calls were made before patients had been enrolled to receive palliative care from the team, and two (9%) were made afterwards. The mean mental compound score of the caregivers at the time of the interview was 41 (range 28–57). There was a lack of correlation between MCS-12 and number of emergency calls. Conclusion Emergency calls were more likely to occur if the patients were not being attended by our palliative care team. Because of the lack of correlation between MCS-12 and the number of emergency calls, the MCS-12 cannot indicate that acutely stressful situations triggered the calls. However, we conclude that special palliative care programs can reduce psychosocial strain in family caregivers. Therefore, the number of emergency calls may be reduced and this fact allows more palliative patients to die at home.
Wiese, Christoph HR; Vossen-Wellmann, Andrea; Morgenthal, Hannah C; Popov, Aron F; Graf, Bernhard M; Hanekop, Gerd G
This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients/outpatients referred to the Palliative Medicine Program in a 4-month period were enrolled. Data were collected at the initial consultation using standardized forms with spaces for: reason for the consultation, referring service, demographics and history, ECOG performance status, symptoms, prognosis and diagnostic tests, treatment, and care plan. In all, 240 patients were seen: 79% were referred for symptom management; 53% were referred from medical oncology; and 50% were women. Median patient age was 67 years (range 18-96). Median performance status was 2 (1-4). Most (84%) of the patients had cancer. The cancer sites were: lung in 26% of cases, colorectal in 8%, and breast in 7%. Inpatients accounted for 53% and outpatients, for 47% of the study population. The median number of symptoms per patient was 13 (2-30). The estimated survival was <2 weeks in 15%, 2-8 weeks in 38%, 2-6 months in 37%, and >6 months in 10%. The patients' goals were: improve symptoms for 84%, return home for 55%, and no further admissions for 5%. The support systems named by patients were: family in 89%, friends in 13%, and the community in 5%. Hospice care was discussed at the consultation with 38% of the patients, would have been inappropriate for 31%, was not discussed with 22%, and had been discussed before with 9%. In response to questions about psychosocial care, a caregiver was identified by 78%, a spokesperson by 75%, and durable power of attorney was referred to by 21%. The DNR status was discussed on consult by 57%, had already been discussed with 30%, and was not discussed with 13%. Plan of care foresaw outpatient follow-up for 40%, inpatient follow-up for 32%, and transfer to palliative medicine for 27%. In 39% of cases the consults were considered late referrals. New medications suggested were opioids for 46% of patients, antiemetics for 28%, a bowel regimen for 24%, steroids for 15%, and others for 51%. (1) Palliative medicine consultation involves common complex medical, psychological, and social problems. (2) Complex symptomatology in this population is confirmed. (3) Multiple interventions were suggested even at the initial consultation. (4) Important issues such as DNR (do not resuscitate) status, support system, treatment goals, and eligibility for hospice care had often not been addressed. PMID:12029434
Homsi, Jade; Walsh, Declan; Nelson, Kristine A; LeGrand, Susan B; Davis, Mellar; Khawam, Elias; Nouneh, Chadi
Background In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries. Methods and design Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project. Conclusion Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care.
Palliative care developments in the region represented by the Middle East Cancer Consortium, provides the first comprehensive review and comparative analysis of palliative care in MECC members, Cyprus,Egypt,Israel, Jordan,Palestinian Authority,and Turkey....
A. Bingley D. Clark
Using an applied policy approach, we describe and discuss the policies and practice that influence access to palliative care and hospice to persons living in assisted living facilities (ALFs). We found that not many people, policy makers included, have a clear understanding of what palliative care is. We also found that very few regulations are in place to safeguard a
Julie C. Lima; Susan C. Miller; Renée R. Shield
Objective: To investigate the attitudes of terminally ill individuals toward the legalization of euthanasia or physician-assisted suicide (PAS) and to identify those who would personally desire such a death. Design: In the Canadian National Palliative Care Survey, semistructured interviews were administered to 379 patients who were receiving palliative care for cancer. Patients who expressed a desire for physician-hastened death were
Keith G. Wilson; Harvey Max Chochinov; Christine J. McPherson; Merika Graham Skirko; Pierre Allard; Srini Chary; Pierre R. Gagnon; Karen Macmillan; Marina De Luca; Fiona O’Shea; David Kuhl; Robin L. Fainsinger; Andrea M. Karam; Jennifer J. Clinch
According to the guidelines which were published by WHO in 2008, palliative care has been defined as "An approach that improves the quality of life of the patients and their families who face the problems which are associated with life-threatening illnesses, through the prevention and relief of suffering by means of an early identification, an impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual". The intervention which is provided as a part of the palliative care has to be provided by health professionals who strictly work as a part of multidisciplinary team and have been specifically trained to an optimal level of competency in the field. The impairment of the physical function and pain are two key problem areas in palliative care, which a physiotherapist deals with. Is a physiotherapist who is trained in India, trained to work as an efficient member of the team in this field? THIS ARTICLE DEALS WITH THE FOLLOWING: What is palliative care and what is its importance?A multidisciplinary approach to palliative careThe scenario of palliative care in IndiaThe role of physiotherapy in palliative care.The current scenario of physiotherapy education vis a vis palliative care. PMID:23730677
Based on the lived experience research model, this study retrospectively explores the experiences of spouses of persons who died after being admitted to palliative home care, in order to achieve a deeper understanding of the meaning(s) of spouses' grief before the patient's death. The context for the study was palliative home care in urban Sweden. The transcripts from interviews with
Hans Gunnarsson; Joakim Öhlén
|Social workers in hospice and palliative care settings have been charged with the responsibility of addressing sexuality with their patients and families. However, little direction has been offered as to how to approach this difficult subject within the context of palliative care. This article provides a critical analysis of the previous…
Cagle, John G.; Bolte, Sage
Patients with advanced lung cancer who received early palliative care experienced longer median survival than those who only received palliative care near death, according to results of a randomized clinical trial published August 19, 2010, in the New England Journal of Medicine.
Purpose: Empirical understanding of predictors for home care service use and death at home is important for healthcare planning. Few studies have examined these predictors in the context of the publicly funded Canadian home care system. This study examined predictors for home care use and home death in the context of a “gold standard” comprehensive palliative home care program pilot in Ontario where patients had equal access to home care services. Methods: Secondary clinical and administrative data sources were linked using a unique identifier to examine multivariate factors (predisposing, enabling, need) on total home care expenditures and home death for a cohort of cancer patients enrolled in the HPCNet pilot. Results: Subjects with gastrointestinal symptoms (OR: 1.64; p=0.03) and those with higher income had increased odds of dying at home (OR: 1.14; p<0.001), whereas age, number of GP visits, gastrointestinal symptoms (i.e., nausea, vomiting, bowel obstruction) and eating problems (i.e., anorexia/cachexia) predicted home care expenditures. Conclusions: Predictors of home death found in earlier studies appeared less important in this comprehensive palliative home care pilot. An income effect for home death observed in this study requires examination in future controlled studies. Relevance: Access to palliative home care that is adequately resourced and organized to address the multiple domains of issues that patients/families experience at the end of life has the potential to enable home death and shift care appropriately from limited acute care resources.
Howell, Doris M.; Abernathy, Tom; Cockerill, Rhonda; Brazil, Kevin; Wagner, Frank; Librach, Larry
Purpose To prospectively compare outcomes and processes of hospital-based early palliative care with standard care in surgical oncology patients (N = 152). Methods A randomized, mixed methods, longitudinal study evaluated the effectiveness of a hospital-based Pain and Palliative Care Service (PPCS). Interviews were conducted presurgically and at follow-up visits up to 1 year. Primary outcome measures included the Gracely Pain Intensity and Unpleasantness Scales and the Symptom Distress Scale. Qualitative interviews assessed social support, satisfaction with care, and communication with providers. Survival analysis methods explored factors related to treatment crossover and study discontinuation. Models for repeated measures within subjects over time explored treatment and covariate effects on patient-reported pain and symptom distress. Results None of the estimated differences achieved statistical significance; however, for those who remained on study for 12 months, the PPCS group performed better than their standard of care counterparts. Patients identified consistent communication, emotional support, and pain and symptom management as positive contributions delivered by the PPCS. Conclusions It is unclear whether lower pain perceptions despite greater symptom distress were clinically meaningful; however, when coupled with the patients’ perceptions of their increased resources and alternatives for pain control, one begins to see the value of an integrated PPCS.
Baker, Karen; Stolar, Marilyn; Miller-Davis, Claiborne; Ames, Nancy; Yates, Jan; Bolle, Jacques; Pereira, Donna; St. Germain, Diane; Handel, Daniel; Berger, Ann
The concept of symbiotic niceness illustrates a mutually shared advantage in the nurse-patient relationship. This relationship is premised on the co-production of niceness through the doing of psychosocial care. This paper presents an account of 'symbiotic niceness' produced in palliative care nurses' talk. The data are collected from two hospices and one general hospital for the dying. The analysis of talk demonstrates how psychosocial care can be understood as the collaborative practice of 'niceness' in the daily activities of participants, and how they collaboratively achieve reciprocal and therapeutic relevance for their talk. Participants co-engage in a 'selling game'. Through the activities of selling, a set of personal assets that constitute their personal Curriculum Vitae (CV) are revealed. It suggests that nurses' assets, when combined with patients' assets, function as marketable 'products' to produce an impression of nice patients and professionals. This in turn leads to the production of an impression of 'nice' organisations. Impression management is presented as a key strategy for the production of marketable niceness. Through the co-performance of niceness in talk, both nurses and patients are constructed as people who are somewhat charismatic, friendly, informal, understanding and concerned. This paper argues that underpinning the co-enactment of symbiotic niceness is the sharedness of patients' and nurses' experiences and a reciprocal notion of therapeutic help. It serves as a means of managing relations between palliative care nurses and dying patients. Symbiotic niceness thus represents a core component of professional and patient identity which works to maintain social orderliness as well as to advance personal, professional and organisational aspirations. PMID:15081206
Abstract Background Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. Objective To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. Method A cross-sectional survey of nurses at a freestanding children's hospital in 2005. Results Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. Conclusions Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.
Tubbs-Cooley, Heather L.; Santucci, Gina; Kang, Tammy I.; Feinstein, James A.; Hexem, Kari R.
Purpose To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care.
Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim
We have been developing a VR system to provide patients with emotional support and to encourage them to assume an active life against cancer, since patients with an active lifestyle survive longer than those with a passive lifestyle. A possible explanation for this latter fact is that psychological stimulation may also activate the endocrine system and the immune system. Both systems may be able to rapidly repair tissue damaged by cancer and change the characteristics of the cancer itself. Although microelectrical analysis and molecular and genetic analyses are rapidly solving the riddles of the relationship between the brain and thought, we think that our VR research for palliative medicine may also play an important role in this area with regard to the development of new tools for treatment and support. This notion is based on the hypothesis that the brain can reorganize itself to compensate for irrationality or inappropriateness through pharmacological adaptation and/or anatomical regeneration of synapses. Another reason why VR research in palliative medicine is useful is that VR techniques represent not only an enhanced human-machine interface, but also an enhanced human communication technology. VR technology may also be used to help patients accept their disease. The mental state of a patient in the terminal stage of cancer changes step by step from denial of cancer, hope for a new treatment for cancer, suspicion of medical treatment, uneasiness regarding their future life, irritation, depression, and acceptance or despair. We plan to develop a new type of counseling system in medical cyberspace to provide mental care. It can also be used for group therapy or humor therapy to reduce loneliness. In summary, we conclude that VR technology can be applied to palliative medicine (1) to support communication between the patient and others, (2) to provide psychological support to treat neurosis and help to stabilize the patient's mental state, and (3) to actually treat cancer. PMID:10175345
Health care should make an attempt to understand the different religious principles that affect end-of-life decisions in patient care. With advanced illness, defining an ethical framework is essential to understanding sensitive issues. Compassionate care is crucial in all end-of-life care settings. Physician awareness is a key principle in inculcating the religious values of patients. Cultural and religious awareness on the part of the health-care team is needed to provide patients with effective end-of-life palliative and hospice care.
Pain relief and palliative care play an increasingly important role in the overall approach to critically ill and injured patients. Despite significant progress in clinical patient care, our understanding of death and the dying process remains limited. For various reasons, people tend to delay facing questions associated with end-of-life, and the fear of the unknown often creates an environment of avoidance and an atmosphere of taboo. The topic of end-of-life care is multifaceted. It incorporates medical, ethical, spiritual, and religious aspects, among many others. Our ability to sustain the lives of the critically ill may be complicated by continuing life support in medically futile scenarios. This article, as well as the remainder of the IJCIIS Symposium on End-of-Life in Trauma/Intensive Care Unit, will explore the most important issues in the field of modern end-of-life care and palliative medicine, with a focus on critically ill and injured patients.
Adolph, Michael D; Frier, Kimberly A; Stawicki, Stanislaw PA; Gerlach, Anthony T; Papadimos, Thomas J
Background The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process. The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group. The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Methods Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. Results 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence in symptom management (p = 0.02) and confidence in terms of communication (p = 0.038). Useful aspects were pointed out, as well as others to be improved in future applications. The satisfaction of the intervention group was high. Conclusions The results of this study show that there was a significant increase of knowledge of 14%-20% and a significant increase in the perception of confidence in symptom management and communication in the intervention group in comparison with the control group that received traditional methods of education in palliative care or no educational activity at all. The overall satisfaction with the intervention was good-very good for most participants. This on-line educational model seems a useful tool for palliative care training in primary care physicians who have a high opinion about the integration of palliative care within primary care. The results of this study support the suggestion that learning effectiveness should be currently investigated comparing different Internet interventions, instead of Internet vs. no intervention. Trial Registration German Clinical Trials Register DRKS00000694
Limited attention to palliative care communication training is offered to medical students. In this work, we pursued unfolding case responses and what they indicated about student tendencies to use palliative care communication as well as what medical students can learn from their own reflective practice about palliative care. Findings showed an overwhelming trend for students to avoid palliative care communication or inclusion of topics including advance directives, place of care, family support, and dying. Instead, students relied heavily on the SPIKES protocol, communication that was strategically vague and ambiguous, and discussions that centered on specialty care and referral. In reflecting on their own case study responses, students noted an absence of direct communication about prognosis, no coordination of care, late hospice entry, and patient pain resulting from communication inefficacies. Future research should focus on the development of formal and adaptive curriculum structures to address these communication needs. PMID:21071434
Goldsmith, Joy; Wittenberg-Lyles, Elaine; Shaunfield, Sara; Sanchez-Reilly, Sandra
Advances in medicine have signifi- cantly reduced child mortality worldwide ; however those caring for children with life-threatening med- ical conditions are usually committed to employing curative and life-prolonging treatments until death is at hand. This type of intensive care and attention can expose children and their families to unnecessar y suffering, particularly if inadequate attention is paid to the
Huda ABU-SAAD HUIJER
This is the first part of two articles exploring oral health problems and treatments for children receiving palliative care, successful management of which can improve considerably the quality of life for this group of children and young people. Part one includes an adapted oral health assessment tool for use in children and young people with complex and palliative healthcare needs that has the potential to help nurses identify and monitor oral health problems and prevent or minimise oral problems from developing. Part two--to be published next month--focuses on basic oral hygiene and the management of specific oral health problems. PMID:23586181
Sargeant, Stephanie; Chamley, Carol
Despite clear guidance from the Royal College of Paediatrics and Child Heath and Together for Short Lives, among others, the delivery of palliative care remains inconsistent on neonatal intensive care units, with many infants receiving full intensive care measures until the final moments of their lives. This case study identifies barriers faced by members of the neonatal team: fear of respiratory depression surrounding opiate use at the end of life, conflict among members of the care team leading to moral distress, and inadequate training and support for staff, which can inhibit the full transition to a palliative care framework at the end of life. Recommendations from the literature are collated to address these barriers.Training programmes for staff covering the tenets of palliative care, including symptom management, analgesic use, and communication skills, as well as regular multidisciplinary forums and debriefings are necessary to improve the care provided to infants and their families where there is a palliative care need. PMID:23971309
This article will focus on the evidence to support the treatment of a palliative patient who was diagnosed with cancer-related secondary lymphoedema. A case study approach has been adopted, which focuses on the anatomy and physiology of lymphoedema and how this is treated through an analysis of the treatment regimens. To establish the effectiveness of these treatment regimes, the use of objective and subjective tools will also be analysed to ascertain their importance within care. The findings of this case study and the supporting evidence indicate a positive correlation between the use of lymphoedema treatment methods in both limb volume reduction and quality-of-life outcomes. However, robust evidence is required to expand the importance of each treatment used in the area of lymphoedema management. PMID:22874857
Context: Complementary medicine like hypnotherapy is often used for pain and palliative care. Health professionals vary in views about hypnotherapy, its utility, value, and attitudes. Aims: To understand the opinions of health professionals on hypnotherapy. Settings and Design: A semi-qualitative method to survey opinions of the health professionals from various disciplines attending a programme on hypnotherapy was conducted. Materials and Methods: The survey form consisted of 32 statements about hypnosis and hypnotherapy. Participants were asked to indicate whether they agreed, disagreed, or were not sure about each statement. A qualitative feedback form was used to obtain further views about hypnotherapy. Statistical Analysis Used: Percentage, frequency distribution. Results: The sample consisted of 21 participants from various disciplines. Two-thirds of the participants gave correct responses to statements on dangerousness of hypnosis (90%), weak mind and hypnosis (86%), and hypnosis as therapy (81%). The participants gave incorrect responses about losing control in hypnosis (57%), hypnosis being in sleep (62%), and becoming dependent on hypnotist (62%). Participants were not sure if one could not hear the hypnotist one is not hypnotized (43%) about the responses on gender and hypnosis (38%), hypnosis leading to revealing secrets (23%). Conclusions: Despite patients using complementary medicine services, often health professionals are unaware of the issues associated with these services. These myths may interfere in using hypnotherapy as therapeutic tool in palliative care. It is important for health professionals to have an appropriate and evidence-based understanding about the complementary therapies including hypnotherapy.
Desai, Geetha; Chaturvedi, Santosh K; Ramachandra, Srinivasa
Purpose of review In this review, we outline the rationale for expanding the role of palliative care in end-stage renal disease (ESRD), describe the components of a palliative care model, and identify potential barriers in implementation. Recent findings Patients receiving chronic dialysis have reduced life expectancy and high rates of chronic pain, depression, cognitive impairment, and physical disability. Delivery of prognostic information and advance care planning are desired by patients, but occur infrequently. Furthermore, although hospice care is associated with improved symptom control and lower healthcare costs at the end of life, it is underutilized by the ESRD population, even among patients who withdraw from dialysis. A palliative care model incorporating communication of prognosis, advance care planning, symptom assessment and management, and timely hospice referral may improve quality of life and quality of dying. Resources and clinical practice guidelines are available to assist practitioners with incorporating palliative care into ESRD management. Summary There is a large unmet need to alleviate the physical, psychosocial, and existential suffering of patients with ESRD. More fully integrating palliative care into ESRD management by improving end-of-life care training, eliminating structural and financial barriers to hospice use, and identifying optimal methods to deliver palliative care are necessary if we are to successfully address the needs of an aging ESRD population.
Tamura, Manjula Kurella; Cohen, Lewis M.
Purpose: With improved effectiveness of early detection and treatment, many patients with cancer are now living with advanced disease and associated symptoms. As cancer becomes a chronic illness, adequate attention to patients' symptoms and psychosocial needs in the community setting requires positioning of palliative care alongside cancer care. This article describes the current palliative care needs of a population of community-dwelling patients with advanced cancer who are not yet ready for transition to hospice. Methods: This secondary analysis used quality-monitoring data collected in three community-based palliative care organizations. Analyses focused on people with cancer-related diagnoses who were receiving palliative care during 2008 to 2011. Results: The analytic data set included 4,980 people, 10% of whom had cancer. Median age was 71 years. Forty-eight percent had been hospitalized at least once in the 6 months before palliative care referral. Forty-nine percent had a Palliative Performance Score (PPS) of 40% to 60%; 40% had PPS ? 30%. Although 81% had an estimated prognosis of ? 6 months, 58% were expected to live weeks to months. Thirty-three percent had no identified healthcare surrogate; 59% had no do-not-resuscitate order despite declining functional status and limited prognosis. Ninety-five percent reported ? 1 symptom, and 67% reported ? 3 symptoms; a substantial proportion did not receive treatment for symptoms. Conclusions: Patients referred to community-based palliative care experience multiple often-severe symptoms that have been insufficiently addressed. They tend to have declining performance status. Earlier palliative care intervention could improve outcomes but will require delivery models that better coordinate inpatient/outpatient oncology and community-based palliative care.
Kamal, Arif H.; Bull, Janet; Kavalieratos, Dio; Taylor, Donald H.; Downey, William; Abernethy, Amy P.
The purpose of this study was to assess the impact of an elective geriatric palliative care course on medical students' attitudes, knowledge, and behaviors regarding communication with terminally ill patients. Surveys were administered at the beginning and end of the elective. Despite a significant increase in knowledge about geriatric and palliative medicine (F = 24.80; P < .001), there were
Sandra E. Sanchez-Reilly; Elaine M. Wittenberg-Lyles; Melinda M. Villagran
Challenges in societal demographics, finances, and human suffering are pushing us towards a new paradigm in health care delivery. The pallia- tive care paradigm is a necessary complement to existing acute care and chronic care paradigms. Palliative care does not replace prior paradigms; instead, it adds value and provides a shift in focus when appropriate. Baylor University Medical Center has
ROBERT L. FINE
Background Transitions in the location of care and in who provides such care can be extremely stressful for individuals facing death and for those close to them. The objective of this study was to describe the distribution of transitions in care experienced by palliative care patients following admission to a comprehensive palliative care program (PCP). A better understanding of these transitions may aid in reducing unnecessary change, help predict care needs, enhance transitions that improve quality of life, guide health care system communication links and maximize the cost-effective utilization of different care settings and providers. Methods Transition and demographic information pertaining to all patients registered in the PCP at the Queen Elizabeth II Health Sciences Centre (QEII), Halifax, Nova Scotia, Canada between January 1, 1998 and December 31, 2002 and who died on or prior to December 31, 2002 was extracted from the PCP database and examined. A transition was defined as either: (1) a change in location of where the patient was cared for by the PCP or, (2) a change in which clinical service provided care. Descriptive analysis provided frequencies and locations of transitions experienced from time of PCP admission to death and during the final two and four weeks of life, an examination of patient movement and a summary of the length of stay spent by patients at each care location. Results Over the five year period, 3974 adults admitted to the QEII PCP experienced a total of 5903 transitions (Mean 1.5; standard deviation 1.8; median 1). Patients with no transitions (28%) differed significantly from those who had experienced at least one transition with respect to survival time, age, location of death and diagnosis (p < 0.0001). The majority of patients were admitted to the PCP from various acute care units (66%). Although 54% of all transitions were made to the home, only 60% of these moves included care provided by PCP staff. During the last four weeks of life, 47% of patients experienced at least one transition; 36% during the final two weeks of life. Shorter stays in each location were evident when care was actively provided by the PCP. Conclusion A relatively small number of patients under the care of the PCP at the end of life, made several transitions in care setting or service provider. These particular patients need closer scrutiny to understand why such transitions take place so that clinical programs may be designed or modified to minimize the transitions themselves or the impact transitions have on patients and families.
Burge, Frederick I; Lawson, Beverley; Critchley, Patrick; Maxwell, David
This study determines the confidence levels of physicians in providing components of pediatric palliative care and identifies their willingness to obtain training and to make palliative care referrals. Surveys were mailed to all physicians at Primary Children's Medical Center. The survey instrument includes 3 demographic items, 9 items designed to assess physician confidence in core palliative care skills, and 4
M. Joan Sheetz; Mary-Ann Sontag Bowman
As part of a 5-year study funded by the National Cancer Institute, all graduate nursing students, including student registered nurse anesthetists (SRNAs) participated in a 2-credit-hour course called Interdisciplinary Palliative Care. Medical and health science students also participated in the course, with more than 800 students completing the course to date. The sample consisted of 62 master's-level students enrolled in either the first or second year of the nurse anesthesia program. A pretest-posttest design was used to determine changes in palliative care knowledge and perceived effectiveness in palliative care skills. There was an overall improvement in knowledge and attitudes related to course content. Students reported that, through the development of new knowledge, they felt better able to care for and advocate for their patients. Further research is needed into the appropriate roles that Certified Registered Nurse Anesthetists (CRNAs) can play in palliative and end-of-life care. PMID:22403962
Callahan, Margaret Faut; Breakwell, Susan; Suhayda, Rosemarie
A hospice is a program of palliative and supportive services which provides physical, psychological, social, and spiritual care for dying persons and their families. Services are provided by a medically supervised interdisciplinary team of professionals a...
The Middle East has been experiencing an ongoing political conflict for the past several decades. This situation has been characterized by hostility often leading to violence of all sources. At times, such a conflict led to the outbreak of a military war, which was followed by an enmity between religious, ethnic, cultural, and national populations. In such environmental situations, palliative care professionals often confront major challenges including bias, mistrust, and mutual suspicion between patients and their treating clinicians. In order to overcome such obstacles, while rendering palliative care services, all professionals involved need careful planning and execution of their treatment plans. The latter is however possible, and sometimes successful even across lines of conflict, thereby promoting understanding, mutual respect, and tolerance between the involved communities and individuals. PMID:21538041
Silbermann, Michael; Khleif, Amal; Tuncer, Murat; Pitsillides, Barbara; Shad, Aziza; Oberman, Amitai; Elshami, Mohammad; Gultekin, Murat; Daher, Michel; Tarawneh, Mohammed; Harford, Joe
The primary aim of this study was to examine the association between physical activity and quality of life (QoL) in cancer patients receiving palliative care. Fifty advanced cancer patients aged 18 years or older with clinician-estimated life expectancy of 3–12 months and Palliative Performance Status Scale scores greater than 30% were recruited from an outpatient palliative care clinic and palliative home
Sonya S. Lowe; Sharon M. Watanabe; Vickie E. Baracos; Kerry S. Courneya
Abstract Older patients and their families desire control over health decisions in serious illness. Experts recommend discussion of prognosis and goals of care prior to decisions about treatment. Having achieved longevity, older persons often prioritize other goals such as function, comfort, or family support-and skilled communication is critical to shift treatment to match these goals. Shared decision making is the ideal approach in serious illness. Older patients desire greater family involvement; higher rates of cognitive impairment mean greater dependency on surrogates to make decisions. Despite the importance of communication, fewer than half of older patients or families recall treatment discussions with clinicians, and poor quality communication adversely affects family satisfaction and patient outcomes. Direct audiorecording of clinical encounters and longitudinal studies of communication and treatment decisions have yielded important insights into the quality of clinical communication. Current clinical practice rarely meets standards for shared decision making. Innovative methods to record and use patient preferences show promise to overcome the limitations of traditional advance directives. Decision aids, intensive clinician training, and structured interpersonal communication interventions have all been shown to be effective to improve the quality of communication and decision making. Priorities for geriatric palliative care research, building on these insights, now include empirical testing of communication approaches for surrogates and for diverse populations, exploration of meaningful ways to communicate prognosis, and expansion of intervention research. PMID:24007351
Hanson, Laura C; Winzelberg, Gary
To graduate internal medicine residents with basic competency in palliative care, we employ a two-pronged strategy targeted at both residents and attending physicians as learners. The first prong provides a knowledge foundation using web-based learning programs designed specifically for residents and clinical faculty members. The second prong is assessment of resident competency in key palliative care domains by faculty members using direct observation during clinical rotations. The faculty training program contains Competency Assessment Tools addressing 19 topics distributed amongst four broad palliative care domains designed to assist faculty members in making the clinical competency assessments. Residents are required to complete their web-based training by the end of their internship year; they must demonstrate competency in one skill from each of the four broad palliative care domains prior to graduation. Resident and faculty evaluation of the training programs is favorable. Outcome-based measures are planned to evaluate long-term program effectiveness.
Shpritz, Deborah W.; Wolfsthal, Susan D.; Zimrin, Ann B.; Keay, Timothy J.; Fang, Hong-Bin; Schuetz, Carl A.; Stapleton, Laura M.; Weissman, David E.
Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non–cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center.
Thongkhamcharoen, Rojanasak; Breaden, Katrina; Agar, Meera; Hamzah, Ednin
Palliative care, which seeks to alleviate suffering and optimize quality of life, is an increasingly recognized and valued medical subspecialty. With its focus on identifying and managing symptoms and problems encountered in expected functional decline, the domain of palliative care overlaps significantly with that of oncology, where patients typically experience a host of disease- and treatment-related effects. Assessment instruments have been developed and validated in the context of both disciplines, but oncology may benefit from the inclusion of palliative care screening instruments specifically developed for patients with advanced, life-limiting illnesses. New methods of screening, particularly technology-based ones such as electronic data capture, allow greater flexibility across care settings and longitudinal data capture for ongoing evaluation. This article reviews frequently used and available screening instruments for common palliative needs in cancer patients and provides an example of a novel technology-based screening approach to quickly identify and address a critical patient concern. PMID:20890140
Abernethy, Amy P; Wheeler, Jane L; Currow, David C
Palliative care provides relief from distressing symptoms including pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, problems with sleep and many other symptoms. It can also help you deal with the side effects of the medical tre...
Background To care for terminally ill and dying patients requires a thorough medical education, encompassing skills, knowledge, and attitudes in the field of palliative care. Undergraduate medical students in Germany will receive mandatory teaching in palliative care in the near future driven by recent changes in the Medical Licensure Act. Before new curricula can be implemented, the knowledge of medical students with respect to palliative care, their confidence to handle palliative care situations correctly, their therapeutic attitude, and their subjective assessment about previous teaching practices have to be better understood. Method We designed a composite, three-step questionnaire (self estimation of confidence, knowledge questions, and opinion on the actual and future medical curriculum) conducted online of final - year medical students at two universities in Germany. Results From a total of 318 enrolled students, 101 responded and described limited confidence in dealing with specific palliative care issues, except for pain therapy. With regard to questions examining their knowledge base in palliative care, only one third of the students (33%) answered more than half of the questions correctly. Only a small percentage of students stated they had gained sufficient knowledge and experience in palliative care during their studies, and the vast majority supported the introduction of palliative care as a mandatory part of the undergraduate curriculum. Conclusion This study identifies medical students' limited confidence and knowledge base in palliative care in 2 German universities, and underlines the importance of providing a mandatory palliative care curriculum.
This is the second part of a two-part article on oral health assessment and mouth care for children and young people receiving palliative care. This article covers basic oral hygiene and management of oral health problems: oral candidiasis, coated tongue/dirty mouth, dry mouth, hypersalivation, ulceration, painful mouth, stomatitis and mucositis. The article also covers treating patients who are immunocompromised and the need to educate families and carers in the basic principles of oral care, including the importance of preventing cross-infection. Part one outlined oral assessment and discussed the adaptation of the Nottingham Oral Health Assessment Tool (Freer 2000). PMID:23691903
Sargeant, S; Chamley, C
In this case-study the relevance of psycho-social interventions for providing palliative care in the terminal phase of life of psycho-geriatric patients with functional-psychiatric co-pathology is described. The know-how, interventions and facilities such as available in a reactivation unit in a ‘psychiatric-skilled’ Dutch nursing home, were highly relevant to tune palliative care to the needs and abilities of the patient. The
T. J. E. M Bakker
AbstractIntroductionPatients with chronic heart failure (CHF) suffer significant mortality and morbidity. New patient-centred methods of assessing quality of life are needed that focus on supportive and palliative care needs. We aimed to assess a previously validated palliative care outcome scale (POS) questionnaire in patients with CHF.MethodsPatients seen by Specialist Heart Failure Nurses in outpatient clinics and on home visits were
A Ma; J Reid; A Ness; M ODonnell; D Yellowless; K Boyd; S A Murray; M Denvir
Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed
Lisa P. Gwyther; Terry Altilio; Susan Blacker; Grace Christ; Ellen L. Csikai; Nancy Hooyman; Betty Kramer; Julie M. Linton; Mary Raymer; Judith Howe
Background and aim.?Some studies show that the family members willingly take great responsibility in palliative care. However, their motives for doing so have not been much explored and the aim of this study is to investigate that further.Method.?Twenty family members of patients enrolled in palliative care were interviewed in depth. The interviews were taped, transcribed and analysed using a qualitative,
Lisa Sand; Mariann Olsson; Peter Strang
This study, a cross-sectional survey, evaluated the knowledge of the palliative approach to care of an entire care workforce in an Australian residential aged-care organization (n = 116, 30% response rate). Knowledge deficits were found at all staff levels: RNs lacked a full comprehension of pain and symptom management, and personal care attendants' knowledge scores were not statistically different from those of ancillary staff. RN division 1 reported a more positive attitude toward caring for dying patients than other staff groups. Increasing experience in the field was found to be the main determinant of knowledge of, and attitudes toward, the palliative approach, while increasing hours of palliative care education and higher post-school educational level conferred some benefit. Study findings provide strong impetus for education in the palliative approach to care for the entire interdisciplinary team. With targeted education and support, older residents' needs for a palliative approach to care can be identified by all members of the care team, and appropriate response and/or referral can be achieved. PMID:21117549
Ford, Rosemary; McInerney, Fran
The purpose of this study was to identify and prioritize topics for a professional development program in neonatal palliative care. A total of 276 nurses and midwives who work in an Australian neonatal intensive care unit (NICU) and 26 international healthcare professionals working in NICU and palliative care served as participants. A Delphi technique was used, consisting of a series of rounds of data collection via interview and questionnaire, to identify and consolidate opinions of nurses and other healthcare professionals who work in neonatal intensive care units. The main outcome measures were: (1) Topics to be included in a professional development program for nurses working in neonatal intensive care units and (2) the preferred format of the program. Twenty-three high-priority topics were identified, which included preparing families when death is imminent, how to provide emotional support to grieving parents, advocating for a dying baby, and assessing and managing pain in a dying baby. Care of a dying infant requires the same skill set as caring for older terminally ill children internationally. A combination of face-to-face lectures and interactive workshops using case studies and audiovisual examples is the preferred format. PMID:23532030
Synopsis The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians’ strong desire to provide compassionate, competent and sensitive care to the seriously ill child and the child’s family can be effectively translated into clinical practice through these processes. “To cure sometimes, to relieve often, to comfort always -- this is our work.” Author Unknown
Baker, Justin N; Hinds, Pamela S; Spunt, Sheri L; Barfield, Raymond C; Allen, Caitlin; Powell, Brent C; Anderson, Lisa H; Kane, Javier R
Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815
Health care practitioners are increasingly under pressure to curtail spending while trying to deliver excellent patient care. These issues are also affecting palliative care, particularly now that palliative care programs are expanding. A comparison of cost-effectiveness and feasibility of using continuous subcutaneous (SQ) ambulatory infusion of hydromorphone versus intravenous (IV) ambulatory morphine is illustrated in this study. With the high
Jeffrey Fudin; Howard S. Smith; Charlotte S. Toledo-Binette; Ellen Kenney; Andrew B. C. Yu; Ronald Boutin
Objective: The objective of this study was to evaluate the impact of comprehensive case management (CM) and expanded insurance benefits on use of hospice and acute health care services among enrollees in a national health plan. Study Design: Retrospective cohort design with three intervention groups, each matched to a historical control group. Methods: Intervention groups were health plan enrollees who
Claire M. Spettell; Wayne S. Rawlins; Randall Krakauer; Joaquim Fernandes; Mary E. S. Breton; Wayne Gowdy; Sharon Brodeur; Maureen MacCoy; Troyen A. Brennan
Background Southern Africa is disproportionately affected by the HIV/AIDS epidemic. In Lesotho 23% of adults are HIV-positive, and only 26% of those in need are accessing antiretroviral treatment (ART). Consequently, about 18,000 people die from AIDS each year. In this situation, palliative care is needed towards the end of life, but is also recommended throughout the HIV disease trajectory. The World Health Organisation (WHO) has produced the Integrated Management of Adolescent and Adult Illness (IMAI) guidelines, which includes a palliative care guidebook (as well as acute and chronic ART guidebooks). IMAI aims to facilitate the implementation of integrated HIV/AIDS care in resource-poor areas. The opinions of health workers towards this integrated approach to care and the use of IMAI has not been considered in previous research studies. This paper therefore aims to address some of these issues. Methods Semi-structured interviews were conducted with six key informants and ten nurses in Lesotho. The interviews were transcribed verbatim and analysed using content thematic analysis. Results Many nurses described palliative care as synonymous with chronic care and felt that palliative care is necessary for HIV-positive patients despite the introduction of ART. It was thought that the approach taken should be holistic and integrated throughout the disease trajectory. Pain management was noted to be a particular area of need for palliative care, and it was suggested that this could be improved in Lesotho. The IMAI guidelines were thought to be useful, but knowledge of the palliative care booklet was limited. Conclusion Palliative care remains necessary for HIV despite the increasing availability of ART. However, it is currently significantly lacking in Lesotho and many other sub-Saharan African countries. Greater understanding of palliative care amongst health workers is required, as well as strong political will from the Ministry of Health. The IMAI guidelines are a useful tool for holistic HIV care, including palliative care, but they need to be used more effectively. As ART is becoming increasingly available worldwide, the complex chronic care issues for patients with HIV/AIDS should not be neglected.
Kell, Megan E; Walley, John D
Aim: To review the literature relevant to palliative care of the ventilated infant and their family.\\u000aBackground: Impeccable symptom assessment and management is necessary to ensure the optimal quality of life for the ventilated palliative infant and their family. There is a plethora of literature regarding symptom assessment and care when a decision has been made to withdraw ventilatory support.
Christine Foster; Leanne Monterosso
Background SAIATU is a program of specially trained in-home social assistance and companionship which, since February 2011, has provided support to end-of-life patients, enabling the delivery of better clinical care by healthcare professionals in Osakidetza (Basque Health Service), in Guipúzcoa (Autonomous Community of the Basque Country). In January 2012, a retrospective observational study was carried out, with the aim of describing the characteristics of the service and determining if the new social service and the associated socio-health co-ordination had produced any effect on the use of healthcare resources by end-of-life patients. The results of a comparison of a cohort of cases and controls demonstrated evidence that the program could reduce the use of hospital resources and promote the continuation of living at home, increasing the home-based activity of primary care professionals. The objective of this study is to analyse whether a program of social intervention in palliative care (SAIATU) results in a reduction in the consumption of healthcare resources and cost by end-of-life patients and promotes a shift towards a more community-based model of care. Method/design Comparative prospective cohort study, with randomised selection of patients, which will systematically measure patient characteristics and their consumption of resources in the last 30 days of life, with and without the intervention of a social support team trained to provide in-home end-of-life care. For a sample of approximately 150 patients, data regarding the consumption of public healthcare resources, SAIATU activity, home hospitalisation teams, and palliative care will be recorded. Such data will also include information dealing with the socio-demographic and clinical characteristics of the patients and attending carers, as well as particular characteristics of patient outcomes (Karnofsky Index), and of the outcomes of palliative care received (Palliative Outcome Scale). Ethical approval for the study was given by the Clinical Research Ethics Committee of Euskadi (CREC-C) on 10 Dec 2012. Discussion The results of this prospective study will assist in verifying or disproving the hypothesis that the in-home social care offered by SAIATU improves the efficiency of healthcare resource usage by these patients (quality of life, symptom control). This project represents a dramatic advance with respect to other studies conducted to date, and demonstrates how, through the provision of personnel trained to provide social care for patients in the advanced stages of illness, and through strengthening the co-ordination of such social services with existing healthcare system resources, the resulting holistic structure obtains cost savings within the health system and improves the efficiency of the system as a whole.
The terms palliative care, supportive care, and comfort care are used to describe individualized care that can provide a dying person the best quality of life until the end. The term “end-of-life care” is also used in a general sense to refer to all aspects of care of a patient with a potentially fatal condition. While the concept of palliative care is not new, it has only recently been applied to the neonatal population. To the best of our knowledge, none of the neonatal intensive care units (NICUs) in Saudi Arabia have adopted a neonatal program for palliative care. We believe the main reason is lack of knowledge of such programs and the fear of being accused of being heartless and cruel by providing comfort care for dying babies. Comfort care begins with the diagnosis of a life-threatening/terminal condition, and continues throughout the course of illness regardless of the outcome. In this perspective, our aim is to introduce these programs for caregivers in the NICUs in Saudi Arabia. For this purpose, we have reviewed the current recommendations in establishing neonatal palliative care programs and discussed some of the social and religious aspects pertaining to this issue.
Al-Alaiyan, Saleh; Al-Hazzani, Fahad
Background Knowledge concerning palliative care and the associated skills, including effective pain control, is essential for surgeons who treat cancer patients in daily practice. This study focuses on a palliative care training course that has been mandatorily conducted for all surgical residents of our hospital since 2009. Methods We evaluated the effectiveness of our mandatory palliative care training course by conducting a retrospective study of the patients' medical records and participants' questionnaire results and discussed the importance of palliative care education for surgical residents. Results All 12 surgical residents who participated in the course in 2009 had graduated 4–9 years back. They were assigned to look after a total of 92 cases (average, 7.66 cases per resident) during the course. The purpose of care in most cases (92.3%) was to mitigate pain. Introducing analgesic adjuvants such as gabapentin or amitriptyline accounted for the largest part of initial interventions (23.9%) aimed at controlling cancer pain, followed by changes in route of administration or doses of prior opioid analgesics (21.7%). Interventions with opioid analgesics were conducted most frequently (47.7%). The overall pain improvement rate was 89.1%. We used a questionnaire after the course to evaluate its effectiveness. Conclusions The surgical residents stated that it was a meaningful course through which they gained practical knowledge on palliative care and that the experience would change their approach to home care.
Oya, Hisaharu; Matoba, Motohiro; Murakami, Satoshi; Ohshiro, Taihei; Kishino, Takayoshi; Satoh, Yuya; Tsukahara, Tetsuo; Hori, Syutarou; Maeda, Masahiro; Makino, Takashi; Maeda, Takashi
This commentary relates to the recently published essay in PLOS Medicine, entitled "Untreated Pain, Narcotics Regulation, and Global Health Ideologies." That essay describes regulatory and other systemic barriers preventing the accessibility of opioid analgesics and contributing to patients not receiving adequate pain relief. Four main points highlighted in the essay are discussed in this commentary: (1) the role of international treaties in medication availability; (2) the role of the International Narcotics Control Board in medication availability; (3) the role of regulatory policy in treating pain; and (4) the role of opioid analgesics in treating pain. Recent authoritative statements and activities suggest a strengthened infrastructure within which governments currently can work to improve the availability of controlled medicines to enhance patient pain and palliative care services. PMID:23901905
Maurer, Martha A; Gilson, Aaron M; Husain, S Asra; Cleary, James F
In all, 119 hospice palliative care volunteers from 3 community-based hospice programs completed the Volunteer Retention Questionnaire (VRQ), a 33-item survey designed for this study. The VRQ asks volunteers to rate the importance of each item to their decision to continue volunteering. The items that received the highest mean importance ratings included enjoying the work they do, feeling adequately prepared/trained to perform their role, and learning from their patients' experiences/listening to their patients' life stories. Being recognized (eg, pins for years of service or being profiled in the hospice newsletter), receiving phone calls/cards from their volunteer coordinator on special occasions, and being reimbursed for out-of-pocket expenses were among the items that received the lowest mean importance ratings. Suggestions for improving volunteer retention are provided. PMID:22811213
Claxton-Oldfield, Stephen; Jones, Richard
BackgroundNot much is known about how general practitioners (GPs) who work regular out-of-hours shifts in the community feel about prescribing medication for symptom control in end-of-life care patients, how they gain palliative care experience and what they perceive as benefits and hindrances within service delivery to this vulnerable patient and carer group.ObjectivesTo determine, by interviewing GPs who provide out-of-hours care,
Mark Taubert; Simon I R Noble; Annmarie Nelson
A rare opportunity to examine accomplishments and identify ways to advance research in end-of-life and palliative care was offered by the National Institute of Nursing Research (NINR) through a summit meeting held in August 2011. The Science of Compassion: Future Directions in End-of-Life and Palliative Care brought together nationally recognized leaders in end-of-life and palliative care research, including grantees of
Ellen L. Csikai
Developing effective communication and symptom assessment skills is an important component of palliative care training for advance practice nurses (APNs) and other health care providers. The purpose of this project was to develop and pilot test a three-station palliative care Observed Structured Clinical Examination (OSCE) for APN students and physician fellows. Three stations included discussing goals of care, breaking bad news, and assessing delirium. Measures included the Interpersonal Skills Tool, Station Checklists, the OSCE Evaluation Tool, and a focus group to solicit learners' perspectives about the experience. Findings showed that learners evaluated the exercise as appropriate for their level of training and that standardized patients were convincing and provided helpful feedback. Learner self-evaluation means were significantly lower than those of standardized patient or faculty, and faculty raters demonstrated low interrater reliability. Initial evaluation suggests a three-station palliative care OSCE exercise is effective for multidisciplinary learners, although additional refinement is necessary. PMID:23550548
Corcoran, Amy M; Lysaght, Susan; Lamarra, Denise; Ersek, Mary
A randomised controlled trial was undertaken to assess the effectiveness of a hospital Palliative Care Team (PCT) on physical symptoms and health-related quality of life (HRQoL); patient, family carer and primary care professional reported satisfaction with care; and health service resource use. The full package of advice and support provided by a multidisciplinary specialist PCT (‘full-PCT’) was compared with limited telephone advice (‘telephone-PCT’, the control group) in the setting of a teaching hospital trust in the SW of England. The trial recruited 261 out of 684 new inpatient referrals; 175 were allocated to ‘full-PCT’, 86 to ‘telephone-PCT’ (2?:?1 randomisation); with 191 (73%) being assessed at 1 week. There were highly significant improvements in symptoms, HRQoL, mood and ‘emotional bother’ in ‘full-PCT’ at 1 week, maintained over the 4-week follow-up. A smaller effect was seen in ‘telephone-PCT’; there were no significant differences between the groups. Satisfaction with care in both groups was high and there was no significant difference between them. These data reflect a high standard of care of patients dying of cancer and other chronic diseases in an acute hospital environment, but do not demonstrate a difference between the two models of service delivery of specialist palliative care. British Journal of Cancer (2002) 87, 733–739. doi:10.1038/sj.bjc.6600522 www.bjcancer.com © 2002 Cancer Research UK
Hanks, G W; Robbins, M; Sharp, D; Forbes, K; Done, K; Peters, T J; Morgan, H; Sykes, J; Baxter, K; Corfe, F; Bidgood, C
Unlike hospice, long-term drug safety is an important issue in palliative medicine. Opioids may produce significant morbidity. Cannabis is a safer alternative with broad applicability for palliative care. Yet the Drug Enforcement Agency (DEA) classifies cannabis as Schedule I (dangerous, without medical uses). Dronabinol, a Schedule III prescription drug, is 100% tetrahydrocannabinol (THC), the most psychoactive ingredient in cannabis. Cannabis contains 20% THC or less but has other therapeutic cannabinoids, all working together to produce therapeutic effects. As palliative medicine grows, so does the need to reclassify cannabis. This article provides an evidence-based overview and comparison of cannabis and opioids. Using this foundation, an argument is made for reclassifying cannabis in the context of improving palliative care and reducing opioid-related morbidity. PMID:21444324
Carter, Gregory T; Flanagan, Aaron M; Earleywine, Mitchell; Abrams, Donald I; Aggarwal, Sunil K; Grinspoon, Lester
Much progress has been made in the provision of palliative care across sub-Saharan Africa, however much still remains to be done, particularly in the area of children’s palliative care (CPC). The Beacon Centres programme was set up in 2009, aimed at improving access to CPC in South Africa, Uganda and Tanzania through more and better-trained health professionals and CPC clinical services of a high standard. Having identified sites in each country to develop into CPC Beacon Centres, Navigators were identified who would be the ‘champions’ for CPC in those sites and lead a programme of training, mentorship and support. Five navigators (2 in Uganda and Tanzania and 1 in South Africa) were trained between September and December 2009. Following this they undertook CPC needs assessments at the 3 centres and set up and delivered a six-month CPC training programme, providing mentorship and support to students to enable them to integrate CPC into their workplaces. To date, 188 participants have commenced the six-month course, with 80 having completed it. CPC has been integrated into the activities of the centres and a CPC virtual resource centre set up in South Africa. The achievements from the Beacon project have been great and the work of the navigators immense, but as in all projects it has not been without its challenges. Lessons learnt include issues around: the focus of the project; the length and nature of the training; assessment; accreditation; the choice of navigators; mentoring; administrative support; co-ordination; the choice of project sites; and the integration of CPC into services. The need for CPC is not going to go away and it is therefore important that models of scaling-up are found that are not only practical, feasible, affordable and sustainable, but that focus on the outcome of improved CPC for all those who need it. It is hoped that the lessons shared from the Beacon Project will help in developing and implementing such models.
While palliative care is best delivered in an interdisciplinary format, courses teaching the interdisciplinary approach to palliative care are rare in healthcare education. This article describes a graduate-level course in palliative care for students in nursing, pharmacy, social work, and gerontology taught by faculty from each discipline. The overarching goals of this course are to convey core palliative care knowledge across disciplines, articulate the essential contribution of each discipline in collaborative care, and to define interdisciplinary processes learners need to understand and navigate interdisciplinary palliative care. Learning outcomes included increased knowledge in palliative care, enhanced attitudes in practice and application of skills to clinical practice settings, increased ability to contribute discipline-specific knowledge to their teams' discussions, and a sense of increasing confidence in participating in the care of complex patients, communicating with families, and contributing to the team as a member of their own discipline. PMID:23977797
Supiano, Katherine P
Background The National Quality Forum (NQF) identified hospice services as a national priority area for healthcare quality improvement and endorsed a set of preferred practices for quality palliative and hospice care. This study reports the first national data regarding hospices’ self-reported implementation of the NQF preferred practices and identifies hospice characteristics associated with more comprehensive implementation. Methods We conducted a national cross-sectional survey of a random sample of hospices (n=591; response rate 84%) from September 2008 to November 2009. We evaluated the reported implementation of NQF preferred practices in the care of both patients and families. Results The range of reported implementation of individual NQF preferred practices among hospices was 45–97%. Twenty-one percent of hospices reported having implemented all patient-centered preferred practices, 26% all family-centered preferred practices, and 10% all patient and family-centered preferred practices. In adjusted analyses, large hospices (100 or more patients per day) were significantly more likely than small hospices (less than 20 patients per day) to report having implemented all patient-centered preferred practices (OR=2.46, 95%CI 1.24, 4.90) and all family-centered preferred practices (OR=1.88, 95%CI 1.02, 3.45). Similarly, chain-affiliated hospices were significantly more likely than free-standing hospices to report having implemented all patient-centered preferred practices (OR=2.45, 95%CI 1.23, 4.87) and all family-centered preferred practices (OR=1.85, 95%CI 1.01, 3.41). Conclusions Hospices’ reported implementation of individual preferred practices for palliative and hospice care quality was high; however, reported comprehensive implementation of preferred practices was rare and may be difficult to achieve for small, free-standing hospices.
Carlson, Melissa D.A.; Barry, Colleen; Schlesinger, Mark; McCorkle, Ruth; Morrison, R. Sean; Cherlin, Emily; Herrin, Jeph; Thompson, Jennifer; Twaddle, Martha L.; Bradley, Elizabeth H.
The aim of this study was to explore patients' and carers' preferences and expectations regarding their contribution to research in palliative care through the use of qualitative interviews. Data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. Both studies recorded the recruitment process, numbers of patients or carers accepting
Marjolein Gysels; Cathy Shipman; Irene J. Higginson
BACKGROUND: Knowledge about the quality and organisation of care to terminally ill cancer patients with a relatives' view in a primary health care setting is limited. The aim of the study is to analyse experiences and preferences of bereaved relatives to terminally ill cancer patients in a primary care setting to explore barriers and facilitators for delivery of good palliative
Mette Asbjoern Neergaard; Frede Olesen; Anders Bonde Jensen; Jens Sondergaard
Background Excellence in palliative care demands attention to the multidimensional aspects of patient and family suffering, yet too few psycho-oncology professionals report adequate preparation in this vital area. Methods A total of 148 competitively selected psychologists, social workers, and spiritual care professionals participated in intensive educational courses to enhance their palliative care delivery, leadership, and advocacy skills. Extensive process and outcome evaluations measured the effectiveness of this educational program. Results To date, 2 national courses have been completed. The courses received strong overall evaluations, with participants rating increased confidence in defined palliative care skills. Conclusions The initial results of this innovative National Cancer Institute-funded transdisciplinary training for psycho-oncology professionals affirm the need and feasibility of the program. See the Advocating for Clinical Excellence Project Web site (www.cityofhope.org/ACEproject) for additional course information.
Otis-Green, Shirley; Ferrell, Betty; Spolum, Maren; Uman, Gwen; Mullan, Patricia; Baird, Reverend Pamela; Grant, Marcia
Heart failure (HF) is the most common reason for hospital admission for patients older than 65 years. With an aging population and improving survival in heart failure patients, the number of people living with HF continues to grow. As this population increases, the importance of treating symptoms of fatigue, dyspnea, pain, and depression that diminish the quality of life in HF patients becomes increasingly important. Palliative care has been shown to help alleviate these symptoms and improve patients' satisfaction with the care they receive. Despite this growing body of evidence, palliative care consultation remains underutilized and is not standard practice in the management of HF. With an emphasis on communication, symptom management, and coordinated care, palliative care provides an integrated approach to support patients and families with chronic illnesses. Early communication with patients and families regarding the unpredictable nature of HF and the increased risk of sudden cardiac death enables discussions around advanced care directives, health care proxies, and deactivation of permanent pacemakers or implantable cardioverter defibrillators. Cardiologists and primary care physicians who are comfortable initiating these discussions are encouraged to do so; however, many fear destroying hope and are uncertain how to discuss end-of-life issues. Thus, in order to facilitate these discussions and establish an appropriate relationship, we recommend that patients and families be introduced to a palliative care team at the earliest appropriate time after diagnosis. PMID:23651985
Shah, Ankit B; Morrissey, Ryan P; Baraghoush, Afshan; Bharadwaj, Parag; Phan, Anita; Hamilton, Michele; Kobashigawa, Jon; Schwarz, Ernst R
The End of Life Care Strategy (Department of Health, 2008) stresses the importance of education for all healthcare professionals in the delivery of care in any setting. According to the recent End of Life Care report from the National Audit Office (2008), few care home staff have sufficient training in providing end-of-life care, highlighting communication skills and pain management as two target areas for training. This article explores the development and implementation by a hospice education department of a palliative care link nurse programme in care homes with nursing as a means of providing aspects of the required training. Maintaining the motivation and commitment of the care home staff and managers is seen as vital in sustaining the programme, which has been running successfully for 4 years. It is important to differentiate between care homes with nursing (those that used to be called nursing homes) and care homes without nursing (those that used to be called residential homes). The terminology has changed to reflect the different client group. An evaluation of the programme was undertaken after 1 year and the key findings are discussed and future developments are highlighted. PMID:19104477
High quality comprehensive palliative care is a critical need for millions of patients and families, but remains only a dream in many parts of the world. The failure to do a strategic planning process is one obstacle to advancing education and pain prevention and relief. The Middle Eastern Cancer Consortium Steering Committee attendees completed an initial strategic planning process and identified "developmental steps" to advance palliative care. Underscoring the multi-disciplinary nature of comprehensive palliative care, discipline-specific planning was done (adult and pediatric cancer and medicine, pharmacy, nursing) in a separate process from country-specific planning. Delineating the layers of intersection and differences between disciplines and countries was very powerful. Finding the common strengths and weaknesses in the status quo creates the potential for a more powerful regional response to the palliative care needs. Implementing and refining these preliminary strategic plans will augment and align the efforts to advance palliative care education and pain management in the Middle East. The dream to prevent and relieve suffering for millions of patients with advanced disease will become reality with a powerful strategic planning process well implemented. PMID:21448033
Moore, Shannon Y; Pirrello, Rosene D; Christianson, Sonya K; Ferris, Frank D
Abstract Background: Primary care physicians (PCPs) have a major responsibility in the management of palliative patients. Online palliative care (PC) education has not been shown to have a clinical impact on patients that is equal or different to traditional training. Objective: This study tested the clinical effectiveness of online PC education of physicians through impact on symptom control, quality of life (QOL), caregiver satisfaction, and knowledge-attitude of physicians at 18 months of the intervention. Methods: We conducted a randomized clinical trial. Subjects were 169 physicians randomly assigned to receive the online model or traditional training. Consecutive patients with advanced cancer requiring PC were included. Physicians and patients completed the Palliative Care Outcome Scale (POS), and patients the Brief Pain Inventory (BPI) and the Rotterdam Symptom Checklist (RSCL) twice, 7 to 10 days apart. Caregivers completed the SERVQUAL. Physicians' level of knowledge-attitude was measured at 18 months. Results: Sixty-seven physicians enrolled 117 patients. The intervention group had reduced scores for pain, symptoms, and family anxiety. The global RSCL scale showed a difference between groups. There was no significant difference in the questionnaires used. Caregiver satisfaction was comparable between groups. Physicians in the intervention group significantly increased their knowledge without any differences in attitude. Online training was completed by 86.6% in the intervention group, whereas 13.4% in the control group accessed traditional training. Conclusions: Participation in an online PC education program by PCPs improved patient scores for some symptoms and family anxiety on the POS and also showed improved global QOL. Significant differences were found in physicians' knowledge at short and long term. PMID:23987657
Pelayo-Alvarez, Marta; Perez-Hoyos, Santiago; Agra-Varela, Yolanda
Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer. PMID:23641169
Docherty, Sharron L; Thaxton, Cheryl; Allison, Courtney; Barfield, Raymond C; Tamburro, Robert F
Cancer patients may commit suicide at any stage of the disease and many risk factors of suicide have been described in the literature. To identify the possible vulnerability factors of suicide in five terminal cancer patients who committed suicide while they were cared for at home by well-trained palliative care teams, a psychological autopsy study was carried out by reviewing
Antonio Filiberti; Carla Ripamonti; Amadio Totis; Vittorio Ventafridda; Franco De Conno; Paolo Contiero; Marcello Tamburini
With increased numbers of the elderly, including nursing home patients, being accepted for end-stage kidney disease (ESKD) management, there is heightened interest and focus on end of life decisions, advanced care planning and directives, withdrawal from dialysis and palliative care in this setting. Despite this, care at the individual patient level can vary greatly. Here, we present two contrasting cases to highlight the importance of early and ongoing involvement of palliative care in patients with ESKD. In the first case, a high quality of life was preserved before the patient died with dignity, with early interdisciplinary palliative care involvement. In the second case there was a long protracted period of poor quality of life prior to death. This was associated with resistance to the involvement of palliative care, mainly from the family. Addressing end of life care issues early in the chronic kidney disease (CKD) trajectory and ensuring patients, their families and health care providers are well informed, may contribute to a better outcome for the patient and their family. PMID:23162279
Koshy, A N; Mace, R; Youl, L; Challenor, S; Bull, R; Fassett, R G
Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.
Docherty, Sharron L.; Thaxton, Cheryl; Allison, Courtney; Barfield, Raymond C.; Tamburro, Robert F.
BACKGROUND: There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will
Elizabeth L Sampson; Ingela Thuné-Boyle; Riitta Kukkastenvehmas; Louise Jones; Adrian Tookman; Michael King; Martin R Blanchard