... care is usually provided by palliative care specialists, health care practitioners who have received special training and/or certification in palliative care. They provide holistic care to the patient and family or caregiver ...
Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory
Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.
Freire de Castro Silva, Sandro Luís; Gonçalves, Antônio Augusto; Cheng, Cezar; Fernandes Martins, Carlos Henrique
Mobile devices frequently used in other specialties can find great utility in palliative care. For healthcare professionals, the use of mobile technology not only can bring additional resources to the care, but it can actually radically change the cancer remote care practices. The Brazilian National Cancer Institute (INCA) has developed the largest cancer home care program in Latin America, which currently benefits more than 500 patients. The purpose of this paper is to show the development of an ICT environment of mobile applications developed to support the palliative cancer care program at INCA.
Strömgren, Annette S; Goldschmidt, Dorthe; Groenvold, Mogens
the symptomatology of participating patients and examines differences in symptomatology between patients in three palliative care functions: inpatient, outpatient, and palliative home care. RESULTS: Of 267 eligible patients who were referred to a department of palliative medicine, initial self......-based study of symptomatology in consecutive cancer patients in palliative care, achieving rather complete data from the participants. The symptomatology in these patients was very pronounced. The questionnaires were able to detect clinically important differences between places of service....
Full Text Available Terrah L Foster,1,2 Cynthia J Bell,1 Carey F McDonald,2 Joy S Harris,3 Mary Jo Gilmer,1,21Vanderbilt University School of Nursing, Nashville, 2Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, 3Vanderbilt University, Nashville, TN, USAAbstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psychological, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children's understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced practice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.Keywords: pediatric palliative care, pediatric cancer, oncology, child, suffering
Holmenlund, Kristina; Sjogren, Per; Nordly, Mie
Objective: Due to the multiple physical, psychological, existential, and social symptoms involved, patients with advanced cancer often have a reduced quality of life (QoL), which requires specialized palliative care (SPC) interventions. The primary objective of the present systematic review...... was to review the existing literature about SPC and its effect on QoL, on physical and psychological symptoms, and on survival in adult patients with advanced cancer. Method: We utilized a search strategy based on the PICO (problem/population, intervention, comparison, and outcome) framework and employed....... The evidence in this field of study in general is still nascent, but there is growing support for the utilization of SPC to improve the quality of life of adult patients with advanced cancer. The evidence that SPC reduces physical and psychological symptoms is moderate, while the evidence that it prolongs...
Full Text Available Introduction: Annually more than 27,000 persons die of cancer in the Czech Republic and the overall incidence of malignancies is still increasing. These data shows the need for affordable and good follow-up care especially for patients without any cancer treatment due to irreversible progression of tumor. Currently the outpatient palliative cancer care gets more into the forefront. Prerequisite for a well working outpatient palliative care is cooperation with general practitioners and home health care agencies. The purpose of the so called program of palliative cancer care is to guide a patient in palliative cancer care and to improve the cooperation among health care providers. Methods: During the period from January 2008 to October 2010 we evaluated in patient without any oncology treatment due to irreversible progression of tumor. Results: In palliative outpatient clinic we treated 446 patients, 119 of them received home care services with average length of 27.8 days. 77 patients died at home, 51 in health facilities and 41 in inpatient hospice care. Conclusion: We present pilot study focusing on outpatient palliative cancer care which shows the real benefit from early indication of palliative cancer care. This type of care allows patients to stay as long as possible at home among their close relatives.
Kjørstad, Odd Jarle; Haugen, Dagny Faksvåg
The criteria for refraining from cardiopulmonary resuscitation in palliative care cancer patients are based on patients' right to refuse treatment and the duty of the treating personnel not to exacerbate their suffering and not to administer futile treatment. When is cardiopulmonary resuscitation futile in these patients? Systematic literature searches were conducted in PubMed for the period 1989-2010 on the results of in-hospital cardiopulmonary resuscitation in advanced cancer patients and on factors that affected the results of CPR when special mention was made of cancer. The searches yielded 333 hits and 18 included articles: four meta-analyses, eight retrospective clinical studies, and six review articles. Cancer patients had a poorer post-CPR survival than non-cancer patients. Survival declined with increasing extent of the cancer disease. Widespread and therapy-resistant cancer disease coupled with a performance status lower than WHO 2 or a PAM score (Pre-Arrest Morbidity Index) of above 8 was regarded as inconsistent with survival after cardiopulmonary resuscitation. Cardiopulmonary resuscitation is futile for in-hospital cancer patients with widespread incurable disease and poor performance status.
Anthony J. Bazzan; Andrew B. Newberg; William C. Cho; Daniel A. Monti
The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health ...
Fuly, Patrícia dos Santos Claro; Pires, Livia Márcia Vidal; Souza, Claudia Quinto Santos de; Oliveira, Beatriz Guitton Renaud Baptista de; Padilha, Katia Grillo
Abstract OBJECTIVE To verify the nursing workload required by cancer patients undergoing palliative care and possible associations between the demographic and clinical characteristics of the patients and the nursing workload. METHOD This is a quantitative, cross-sectional, prospective study developed in the Connective Bone Tissue (TOC) clinics of Unit II of the Brazilian National Cancer Institute José Alencar Gomes da Silva with patients undergoing palliative care. RESULTS Analysis of 197 ...
Anthony J. Bazzan
Full Text Available The primary goal of palliative cancer care is typically to relieve suffering and improve quality of life. Most approaches to diet in this setting have focused only on eating as many calories as possible to avoid cachexia. However, as the concept of palliative care has evolved to include all aspects of cancer survivorship and not just end of life care, there is an increasing need to thoughtfully consider diet and nutrition approaches that can impact not only quality of life but overall health outcomes and perhaps even positively affect cancer recurrence and progression. In this regard, there has been a recent emphasis in the literature on nutrition and cancer as an important factor in both quality of life and in the pathophysiology of cancer. Hence, the primary purpose of this paper is to review the current data on diet and nutrition as it pertains to a wide range of cancer patients in the palliative care setting.
It is estimated that in 2008 there were over 12 million new cancer diagnoses and 7 million cancer deaths worldwide. The World Health Organisation (WHO) predicts that cancer rates will increase from 10 million to 24 million in the next 50 years. More than half of cancer cases will be diagnosed in low income nations, where 80% or more of patients will have incurable disease at diagnosis. In situations where most patients are diagnosed with incurable disease or where curative treatment is logistically unavailable, as is the case in many low income countries, the allocation of limited health care resources should reflect a greater emphasis on palliative care. Ironically, access to palliative care is greater in health care systems with well developed infrastructures and facilities for prevention, early detection, and curative treatment of cancer. To provide comprehensive cancer care, a multidisciplinary approach is needed. This maximizes the available treatments and interventions, whilst ensuring a cost effective and ethically sound approach to the treatment of patients at each stage of the disease. Barriers to palliative care may result from its low prioritization in health care policy and education. The WHO expert committee on cancer pain and palliative care report of 1990 called for the integration of efforts directed at maintaining patient quality of life through all stages of cancer treatment. As a result supportive interventions aimed at improving quality of life are needed for patients undergoing both curative and palliative cancer treatment. The International Atomic Energy Agency is currently collaborating with the Open Society Institute to develop palliative care programmes in Eastern Europe, Africa and India, as well as supporting programmes in other regions of the world, through the International Palliative Care Initiative. OSI partners with the IAEA's Programme of Action for Cancer Therapy, the World Health Organization, the International Agency for Research
Osagiede, Osayande; Colibaseanu, Dorin T; Spaulding, Aaron C; Frank, Ryan D; Merchea, Amit; Kelley, Scott R; Uitti, Ryan J; Ailawadhi, Sikander
Palliative care has been increasingly recognized as an important part of cancer care but remains underutilized in patients with solid cancers. There is a current gap in knowledge regarding why palliative care is underutilized nationwide. To identify the factors associated with palliative care use among deceased patients with solid cancer tumors. Using the 2016 National Cancer Data Base, we identified deceased patients (2004-2013) with breast, colon, lung, melanoma, and prostate cancer. Data were described as percentages. Associations between palliative care use and patient, facility, and geographic characteristics were evaluated through multivariate logistic regression. A total of 1 840 111 patients were analyzed; 9.6% received palliative care. Palliative care use was higher in the following patient groups: survival >24 months (17% vs 2%), male (54% vs 46%), higher Charlson-Deyo comorbidity score (16% vs 8%), treatment at designated cancer programs (74% vs 71%), lung cancer (76% vs 28%), higher grade cancer (53% vs 24%), and stage IV cancer (59% vs 13%). Patients who lived in communities with a greater percentage of high school degrees had higher odds of receiving palliative care; Central and Pacific regions of the United States had lower odds of palliative care use than the East Coast. Patients with colon, melanoma, or prostate cancer had lower odds of palliative care than patients with breast cancer, whereas those with lung cancer had higher odds. Palliative care use in solid cancer tumors is variable, with a preference for patients with lung cancer, younger age, known insurance status, and higher educational level.
Nisha Rani Jamwal
Full Text Available Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers' necessities and patients' biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care.
1 | P a g e Award Number: W81XWH-10-1-0802 TITLE: " Racial Disparities in Palliative Care for Prostate Cancer." PRINCIPAL INVESTIGATOR: Alfred I...CONTRACT NUMBER W81XWH-10-1-0802 " Racial Disparities in Palliative Care for Prostate Cancer." 5b. GRANT NUMBER PC094372 5c. PROGRAM ELEMENT NUMBER...developed the tools/methods for working with SEER-Medicare. We plan to use analytic approaches and methods to explore racial disparities in the use of
... for Patients and Families What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to ...
Swetz, Keith M; Kamal, Arif H
Palliative care prioritizes symptom management and quality of life throughout the course of serious illness. Regardless of whether care is inpatient or outpatient, primary or subspecialty, a solid understanding of the basics of effective communication, symptom management, and end-of-life care is crucial. This article reviews these essentials and provides an overview of current evidence to support patient-centered palliative care.
Conclusion: Oncologists, oncology nurses, and patients felt that integration of early specialist palliative care in cancer improves symptom control, end-of-life care, health-related communication, and continuity of care. The perceptions of benefit of the palliative care intervention in the components surveyed, differed among the three groups.
Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...
Walling, Anne M; Tisnado, Diana; Ettner, Susan L; Asch, Steven M; Dy, Sydney M; Pantoja, Philip; Lee, Martin; Ahluwalia, Sangeeta C; Schreibeis-Baum, Hannah; Malin, Jennifer L; Lorenz, Karl A
Although recent randomized controlled trials support early palliative care for patients with advanced cancer, the specific processes of care associated with these findings and whether these improvements can be replicated in the broader health care system are uncertain. The aim of this study was to evaluate the occurrence of palliative care consultation and its association with specific processes of supportive care in a national cohort of Veterans using the Cancer Quality ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) measures. We abstracted data from 719 patients' medical records diagnosed with advanced lung, colorectal, or pancreatic cancer in 2008 over a period of three years or until death who received care in the Veterans Affairs Health System to evaluate the association of palliative care specialty consultation with the quality of supportive care overall and by domain using a multivariate regression model. All but 54 of 719 patients died within three years and 293 received at least one palliative care consult. Patients evaluated by a palliative care specialist at diagnosis scored seven percentage points higher overall (P specialist consultation is associated with better quality of supportive care in three advanced cancers, predominantly driven by improvements in information and care planning. This study supports the effectiveness of early palliative care consultation in three common advanced cancers within the Veterans Affairs Health System and provides a greater understanding of what care processes palliative care teams influence. Published by Elsevier Inc.
Neergaard, Mette Asbjørn; Jensen, Anders Bonde; Olesen, Frede
BACKGROUND. Palliative care for cancer patients is an important part of a GP's work. Although every GP is frequently involved in care for terminally ill cancer patients, only little is known about how these palliative efforts are perceived by the patients and their families, a knowledge...... that is vital to further improve palliative care in the primary sector.AIM. The aim of the study was to analyse the quality of palliative home care with focus on the GP's role based on evaluations by relatives of recently deceased cancer patients and professionals from both the primary and secondary health care...... approach.RESULTS. The analyses revealed several key areas, e.g.: 1) How to take, give and maintain professional responsibility for palliative home care. 2) A need for transparent communication both among primary care professionals and among professionals across the primary/secondary interface. 3...
Full Text Available SUMMARY Objective: To describe the clinical and sociodemographic profile of cancer patients admitted to the Emergency Center for High Complexity Oncologic Assistance, observing the coverage of palliative and home care. Method: Cross sectional study including adult cancer patients admitted to the emergency service (September-December/2011 with a minimum length of hospital stay of two hours. Student’s t-test and Pearson chi-square test were used to compare the means. Results: 191 patients were enrolled, 47.6% elderly, 64.4% women, 75.4% from the city of Recife and greater area. The symptom prevalent at admission was pain (46.6%. 4.2% of patients were linked to palliative care and 2.1% to home care. The most prevalent cancers: cervix (18.3%, breast (13.6% and prostate (10.5%; 70.7% were in advanced stages (IV, 47.1%; 39.4% without any cancer therapy. Conclusion: Patients sought the emergency service on account of pain, probably due to the incipient coverage of palliative and home care. These actions should be included to oncologic therapy as soon as possible to minimize the suffering of the patient/family and integrate the skills of oncologists and emergency professionals.
Parra Palacio, Santiago; Giraldo Hoyos, Clara Elisa; Arias Rodríguez, Camilo; Mejía Arrieta, Daniel; Vargas Gómez, John Jairo; Krikorian, Alicia
To describe the practice of palliative sedation (PS) in patients with advanced cancer in a specialized palliative care (PC) unit in Colombia. Descriptive prospective study including all adults with cancer hospitalized under PS in a cancer institute between January and July 2015 in Colombia. Variables examined were diagnosis, physical functioning, symptoms at the start of sedation, medications and dosages used, and type, level, and time of sedation. Descriptive and correlational statistics were obtained. Sixty-six patients were included, 70% of which were women. The patients had an average age of 61 years (range 24-87), and 74% had a Karnofsky Index (KI) of 50% or less. The most frequent diagnosis was breast cancer (22%), and 82% had metastatic cancer. The prevalence of palliative sedation was 2% and the most common symptoms indicating it were dyspnea (59%), delirium (45%), and pain (32%). All patients received midazolam as a sedative. The average time between the interval start and culmination of sedation was 44 h. There was a significant and inverse relationship between functionality and time under sedation. Palliative sedation is a valid therapeutic option for refractory symptoms causing suffering. The results correspond to international reports and guidelines, which suggests that PS is tailored to the needs of the individual patient while maintaining a high scientific standard, even in a context where PC is under development. However, further development of strategies and clear indications towards the use of PS in Colombia are needed, given its still scarce use.
A randomised, multicentre clinical trial of specialised palliative care plus standard treatment versus standard treatment alone for cancer patients with palliative care needs: the Danish palliative care trial (DanPaCT) protocol
Johnsen, Anna Thit; Damkier, Anette; Vejlgaard, Tove Bahn
Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems.The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report...... palliative needs in a screening, will benefit from being referred to 'early SPC'....
Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M
Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears.
Full Text Available ... The story demonstrates how palliative care can positively influence a patient's and family's experience with illness. Category ... Cancer: Palliative Care - Duration: 3:29. American Cancer Society 4,364 views 3:29 Perinatal Palliative Care - ...
Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M
Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.
Senthil P Kumar
Full Text Available 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.
To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.
M.J. Uitdehaag (Madeleen)
textabstractThis thesis explores palliative care provided to patients with advanced upper gastrointestinal (GI) cancer. The 5-year survival rates for these cancer sites range between 4 and 17%, which implies that many of these patients require palliative care. Considering the fact that there is no
Full Text Available Patients with heart failure have a significant symptom burden and other palliative care needs often over a longer period than patients with cancer. It is acknowledged that this need may be unmet but by how much has not been quantified in primary care data at the population level.This was the first use of Clinical Practice Research Datalink, the world's largest primary care database to explore recognition of the need for palliative care. Heart failure and cancer patients who had died in 2009 aged 18 or over and had at least one year of primary care records were identified. A palliative approach to care among patients with heart failure was compared to that among patients with cancer using entry onto a palliative care register as a marker for a palliative approach to care.Among patients with heart failure, 7% (234/3 122 were entered on the palliative care register compared to 48% (3 669/7 608 of cancer patients. Of heart failure patients on the palliative care register, 29% (69/234 were entered onto the register within a week of their death.This confirms that the stark inequity in recognition of palliative care needs for people with heart failure in a large primary care dataset. We recommend a move away from prognosis based criteria for palliative care towards a patient centred approach, with assessment of and attention to palliative needs including advance care planning throughout the disease trajectory.
Full Text Available Background: Chronic diseases such as cancer would lead to various health needs in patients and their families. To meet needs, developing new educational nursing courses is necessary. Therefore this study was conducted to empower nurses through designing and conducting short-term educational courses for training palliative care nurses. Materials and Methods: This study was a community-based action research which was conducted at Isfahan hospitals that provide services for cancer patients during 2015 at four stages (planning, acting, reflection, and evaluation. Participants (33 samples included nurses, head nurses, managers of nursing services, nursing professors and professors of oncology department. Data were gathered through individual and group interviews and analyzed using content analysis. Results: Data analysis resulted in 3 categories of "professional development of nursing in palliative care" which included subcategories of: knowledge-based performance and positive change in attitude, "obstacles to provide palliative care" with subcategories of: insufficient professional responsibility, insufficient ability in managing some of patients' symptoms and inappropriate interaction between nurses and physicians and "strategies for improving provision of palliative care" with subcategories of: improving the interactions between physicians and nurses, continuous trainings for palliative care and the necessity of developing palliative care in the country. Conclusions: To facilitate the process of providing palliative care to cancer patients, necessary actions and measures must be conducted including improvement of interaction between the members of health team, organizing continuing educational courses on palliative care and development of providing palliative care all over the country by managers of health centers.
Grønvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang
Aims: The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population: The study population is all...... patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion: DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness....
Irany Carvalho da Silva
Full Text Available Palliative care is aimed at people with diseases without perspective of cure or terminally, aiming to provide a better quality of life. This study aims to investigating the discourse of nurses about their understanding of palliative care to elderly patient with cancer and identify strategies used by nurses to promote palliative care to the elderly cancer patient. It is an exploratory research of a qualitative nature, carried out with thirteen nurses from a philanthropic institution in the city of João Pessoa, through a questionnaire. The empirical material was subjected to thematic content analysis, resulting in three categories: design of nurses to assist the elderly in Palliative Care: promoting comfort and minimizing the suffering, the importance of palliative care in humanized care to the elderly with cancer and strategies for the Promotion of Care of the Elderly with Cancer. Participants highlighted the palliative care as essential in the humanization of care, ensuring the dignity and quality of life among the elderly with cancer without possibilities of cure, adding such assistance, the family. Keywords: Palliative Care; Nurse; Elderly; Cancer.
Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J. A.
This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical
Davaasuren, Odontuya; Ferris, Frank D
Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. Mongolia has made real progress in integrating palliative care into the health system. Copyright © 2017. Published by Elsevier Inc.
Grande, G. E.; McKerral, A.; Todd, C. J.
Previous research has shown that palliative home care use is influenced by variables such as age, socioeconomic status, presence of an informal carer, diagnosis, and care dependency. However, there is little information on its association with other health service use. This study compared 121 cancer patients referred to Hospital at Home (HAH) for palliative care with a sample of 206 cancer patients not referred who died within the same period. Electronic record linkage of NHS databases enable...
Adsersen, Mathilde; Thygesen, Lau Caspar; Jensen, Anders Bonde
/units. Patients with brain cancer were more often admitted to hospices, whereas patients with prostate cancer were more often admitted to hospital-based palliative care teams/units. CONCLUSION: It is unlikely that the variations in relation to sex, age and cancer diagnoses can be fully explained by differences...... to investigate whether cancer patients' admittance to SPC in Denmark varied in relation to sex, age and diagnosis, and whether the patterns differed by type of institution (hospital-based palliative care team/unit, hospice, or both). METHODS: This was a register-based study of adult patients living in Denmark......BACKGROUND: Specialised palliative care (SPC) takes place in specialised services for patients with complex symptoms and problems. Little is known about what determines the admission of patients to SPC and whether there are differences in relation to institution type. The aims of the study were...
Mako, Caterina; Galek, Kathleen; Poppito, Shannon R
The large body of empirical research suggesting that patients' spiritual and existential experiences influence the disease process has raised the need for health care professionals to understand the complexity of patients' spiritual pain and distress. The current study explores the multidimensional nature of spiritual pain, in patients with end-stage cancer, in relation to physical pain, symptom severity, and emotional distress. The study combines a quantitative evaluation of participants' intensity of spiritual pain, physical pain, depression, and intensity of illness, with a qualitative focus on the nature of patients' spiritual pain and the kinds of interventions patients believed would ameliorate their spiritual pain. Fifty-seven patients with advanced stage cancer in a palliative care hospital were interviewed by chaplains. Overall, 96% of the patients reported experiencing spiritual pain, but they expressed it in different ways: (1) as an intrapsychic conflict, (2) as interpersonal loss or conflict, or (3) in relation to the divine. Intensity of spiritual pain was correlated with depression (r = 0.43, p spiritual pain did not vary by age, gender, disease course or religious affiliation. Given both the universality of spiritual pain and the multifaceted nature of pain, we propose that when patients report the experience of pain, more consideration be given to the complexity of the phenomena and that spiritual pain be considered a contributing factor. The authors maintain that spiritual pain left unaddressed both impedes recovery and contributes to the overall suffering of the patient.
Kralik, Debbie; Anderson, Barbara
To identify home-based palliative care service utilisation by people with cancer and non-cancer conditions. Palliative care knowledge and skill have been derived from working with people with cancer. People with chronic conditions are now referred for home-based palliative care; however, there has been few studies published that have explored the impact of service utilisation by people with end-stage chronic conditions. The Australia-modified Karnofsky Performance Status (AKPS) scale was calculated for each person upon referral for home-based palliative care services to determine the functional capacity of the individual at the point of referral. Clients were divided into those with cancer diagnosis and those with non-cancer diagnosis. Service utilisation of the individual client was determined until separation from the palliative care service. The study was undertaken in 2007. The majority of people with cancer (63%) and non-cancer (71%) were assessed as having an AKPS score between 50-60. Thirty-one cancer clients (18·7%) and three non-cancer clients (7·1%) had an AKPS score between 70-90. This suggests that people with cancer are referred to palliative care services earlier than people with non-cancer conditions. People with non-cancer conditions were substantially higher users of home-based palliative care services over a longer period of time. Home-based palliative care service utilisation was higher for people with non-cancer conditions. Cost analysis research is recommended to delineate the actual costs of home-based palliative care service provision between people with cancer and non-cancer conditions. There is growing awareness of the need for palliative care services for people with non-cancer conditions. However, these services are provided for longer periods of time for this client group. Implications for practice are that the palliative care needs of people with non-cancer conditions may not be met within current palliative care service provision
Sigurdardottir, Katrin Ruth; Oldervoll, Line; Hjermstad, Marianne Jensen; Kaasa, Stein; Knudsen, Anne Kari; Løhre, Erik Torbjørn; Loge, Jon Håvard; Haugen, Dagny Faksvåg
The difficulties in defining a palliative care patient accentuate the need to provide stringent descriptions of the patient population in palliative care research. To conduct a systematic literature review with the aim of identifying which key variables have been used to describe adult palliative care cancer populations in randomized controlled trials (RCTs). The data sources used were MEDLINE (1950 to January 25, 2010) and Embase (1980 to January 25, 2010), limited to RCTs in adult cancer patients with incurable disease. Forty-three variables were systematically extracted from the eligible articles. The review includes 336 articles reporting RCTs in palliative care cancer patients. Age (98%), gender (90%), cancer diagnosis (89%), performance status (45%), and survival (45%) were the most frequently reported variables. A large number of other variables were much less frequently reported. A substantial variation exists in how palliative care cancer populations are described in RCTs. Few variables are consistently registered and reported. There is a clear need to standardize the reporting. The results from this work will serve as the basis for an international Delphi process with the aim of reaching consensus on a minimum set of descriptors to characterize a palliative care cancer population. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Mosoiu, Daniela; Mitrea, Nicoleta; Dumitrescu, Malina
HOSPICE Casa Sperantei has been pioneering palliative care development in Romania since 1992. The have developed specialist palliative care services in home-based settings, inpatient units, day care centers, and as hospital support teams. They have provided national and international education programs for professionals in the palliative care field, as well as promoting palliative care integration in the health care system. Legislative improvements were adopted, including funding mechanisms for the reimbursement of palliative care services through the health insurance funds, review of opioid policy, and quality standards of care. By the end of 2015, Romania had 115 specialist palliative care services (78 palliative care inpatient units, 24 home-based palliative care services, five outpatient palliative care clinics, four day care centers, and four hospital support teams). A palliative care subspecialty for doctors was recognized as early as 2000, and a multidisciplinary master's degree program has been available at Transilvania University since 2010, when the first palliative care academic position was established. Nursing education includes mandatory palliative care modules in nursing schools. For coordinated development of palliative care at the national level, a national strategy was proposed defining three levels of palliative care provision, local, district, and national. The implementation of the palliative care strategy is partially funded through a World Bank loan. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Monterosso, Leanne; Kristjanson, Linda J
To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. A qualitative study with semi-structured interviews. 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.
Singh, Preet Paul; Jatoi, Aminah
Women physicians in the United States publish less than men and advance academically at a slower pace. Do such gender-based disparities also occur in cancer palliative care, a field in which women appear to hold a strong interest? We undertook a detailed survey of the cancer palliative care literature. We selected 5 cancer palliative care journals on the basis of their high impact factors, and we assessed authorship for the years 1990, 1995, 2000, and 2005. We determined gender and highest educational degree for all US first and last authors. A total of 794 authors are the focus of this report. In 2005, 50% of first authors were women, but only 14% were women physicians. Similarly, 39% of senior authors were women during this year, but only 8% were women physicians. Over this 15-year period, no statistically significant trends were detected to indicate an increase in the number of women authors. These findings are sobering. Future efforts might focus on strategies to improve rates of authorship and, ultimately, improve rates of academic promotion for women interested in cancer palliative care.
PURPOSE OF REVIEW: Patients with heart failure seem particularly suited to palliative care having needs that fall within the prototypical palliative care domains. Despite this there is still much debate as to who should respond to these needs and when. RECENT FINDINGS: Since the early 1990s many studies have been published outlining the unmet needs of patients with heart failure. However, there have been limitations to these studies and they have not guided professionals as to how to respond. More recently comparative studies using cancer as the reference have explored similarities and highlighted differences in need between heart failure and cancer patients. These studies are useful for informing future service development. SUMMARY: Patients with heart failure have variable needs and variable disease trajectories. A targeted response to these needs is required. Palliative triggers or transitions should be recognized by professionals caring for patients with heart failure. It is unlikely that either specialist palliative care or medical specialists working in isolation will be sufficiently experienced to respond to these needs. Research is required to determine the effectiveness of different collaborative approaches; heart failure specialist care aligned with palliative care consultancy or heart failure-oriented palliative care services.
Kurita, Geana Paula; Benthien, Kirstine Skov; Sjøgren, Per
PURPOSE: Studies with neuropsychological assessments in patients with cancer are sparse, and the evidence is very limited regarding their status of cognitive function over time. This study aimed at assessing the prevalence and predictors of cognitive impairment in patients with cancer in palliative...... care. METHODS: Prospective longitudinal investigation derived from the European Palliative Care Cancer Symptom study (2011-2013) including patients with cancer in palliative care, ≥18 years, and with at least one assessment post-inclusion. For cognitive assessment, a 4-item version of the Mini Mental...... State Examination was applied at inclusion and after 4 to 16 weeks. Logistic regression model with multiple imputations was applied. RESULTS: The sample consisted of 1568 patients (50% male, mean age 65.5, 42% with 10-12 years schooling, mean Karnofsky Performance Status-KPS 68%). Longitudinal analysis...
Benthien, K.S; Nordly, M.; Videbæk, K.
PURPOSE: The purposes of the present study were to classify the palliative care population (PCP) in a comprehensive cancer centre by using information on antineoplastic treatment options and to analyse associations between socio-demographic factors, cancer diagnoses, treatment characteristics...... and receiving specialist palliative care (SPC). METHODS: This is a cross-sectional screening study of patients with cancer in the Department of Oncology, Rigshospitalet, Copenhagen University Hospital for 6 months. Patients were assessed to be included in the DOMUS study: a randomised controlled trial...... of accelerated transition to SPC at home (NCT01885637). The PCP was classified as patients with incurable cancer and limited or no antineoplastic treatment options. Patients with performance status 2-4 were further classified as the essential palliative care population (EPCP). RESULTS: During the study period...
... is not under control Need help understanding your situation and coordinating care PALLIATIVE CARE Often a team of specialists provides palliative care. The team usually includes: Palliative care doctors and nurses Social workers and chaplains Pharmacists and nutritionists Counselors and others ...
Music therapists in palliative and cancer care settings often use singing and vocal interventions. Although benefits for these interventions are emerging, more information is needed on what type of singing interventions are being used by credentialed music therapists, and what goal areas are being addressed. To assess music therapists' perceptions on how they use singing and vocal interventions in palliative and cancer care environments. Eighty credentialed music therapists from Canada and the United States participated in this two-part convergent mixed-methods study that began with an online survey, followed by individual interviews with 50% (n = 40) of the survey participants. In both palliative and cancer care, singing client-preferred music and singing for relaxation were the most frequently used interventions. In palliative care, the most commonly addressed goals were to increase self-expression, improve mood, and create a feeling of togetherness between individuals receiving palliative care and their family. In cancer care, the most commonly addressed goals were to support breathing, improve mood, and support reminiscence. Seven themes emerged from therapist interviews: containing the space, connection, soothing, identity, freeing the voice within, letting go, and honoring. Music therapists use singing to address the physical, emotional, social, and spiritual goals of patients, and described singing interventions as accessible and effective. Further research is recommended to examine intervention efficacy and identify factors responsible that contribute to clinical benefit. © the American Music Therapy Association 2017. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org
Full Text Available Aim: Advanced cancer, irrespective of the site of the cancer, is characterized by a number of associated symptoms that impair the quality of life of patients. The management of these symptoms guides palliative care. The present study aims to describe the symptoms and appropriate palliation provided in patients with advanced cancer in a tertiary care hospital in Uttarakhand. Methods: This was an observational study. A total of 100 patients with advanced cancer were included in the study. The data obtained from the patients included symptoms reported by the patients, currently prescribed treatments and the site of cancer. Results: The average number of symptoms reported per patient was 5.33 ± 0.67 (mean ± SE. The most common symptoms were pain, weakness/fatigue, anorexia, insomnia, nausea/vomiting, dyspnea, constipation and cough. Polypharmacy was frequent. Patients consumed approximately 8.7 ± 0.38 (mean ± SE drugs on average during the 2-month period of follow-up. Conclusion: The result gives insight into the varied symptomatology of patients with advanced cancer. Polypharmacy was quite common in patients with advanced cancer, predisposing them to complicated drug interactions and adverse drug reactions.
Vanessa Albuquerque Soares
Full Text Available This study aimed to describe ways of using play by the nursing staff on palliative care of children with cancer and analyze the facilitators and barriers of the use of playing on this type of care. Qualitative, descriptive research developed on November 2012 with 11 health professionals, in a public hospital of the state of Rio de Janeiro. Semi-structured interviews and thematic analysis of the information were conducted. The use of playing before procedures was highlighted as a facilitator on palliative care. The child's physical condition, one's restriction, resistance of some professionals and the lack of time for developing this activity, made the use of play harder. We concluded that playing enables the child with cancer, in palliative care, a humanized assistance, being fundamental to integrate it on the care for these children.
da Costa, Thailly Faria; Ceolim, Maria Filomena
Pediatric palliative care is a challenge for nursing because it requires emotional balance and knowledge about its specific features. This study is an integrative literature review that aims to identify nursing actions in palliative care for children and adolescents with cancer, considering peculiarities of the disease and dying process. The review was performed by searching for articles indexed in Biblioteca Virtual da Adolescência (Adolec), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) and PubMed databases from January 2004 till May 2009. From 29 references found, six met inclusion criteria. Results show teamwork, home care, pain management, dialogue, family support and particularities of childhood cancer fundamental tools for nursing in palliative care. The complexity of care in this situation requires solidarity, compassion, support and relieving suffering.
Nyirő, Judit; Hauser, Péter; Zörgő, Szilvia; Hegedűs, Katalin
Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.
Nakajima, Kasumi; Iwamitsu, Yumi; Matsubara, Mei; Oba, Akira; Hirai, Kei; Morita, Tatsuya; Kizawa, Yoshiyuki
The aim of this study was to clarify, using a nationwide survey, what is perceived as necessary knowledge and skills for psychologists involved in cancer palliative care in Japan, the expectations of medical staff members, and the degree to which these expectations are met. We conducted a questionnaire survey of psychologists involved in cancer palliative care. A total of 419 psychologists from 403 facilities were asked to fill out the questionnaire and return it anonymously. Some 401 psychologists (89 males, 310 females, and 2 unspecified; mean age, 37.2 ± 9.5 years) responded about necessary knowledge and skills for psychologists working in cancer palliative care, the necessity for training, expectations at their current workplace, and the degree to which expectations are met. More than 90% of participants responded that many kinds of knowledge and skills related to the field of cancer palliative care are necessary. Over 80% of participants indicated a necessity for training related to these knowledge and skills. Although more than 50% (range, 50.1-85.8%) of participants responded that such services as "cooperation with medical staff within a hospital," "handling patients for whom psychological support would be beneficial," and "assessment of patients' mental state" were expected at their workplace, fewer than 60% (31.4-56.9%) responded that they actually performed these roles. Our results show that many psychologists in cancer palliative care feel unable to respond to the expectations at their current workplace and that they require more adequate knowledge and skills related to cancer palliative care to work effectively. No other nationwide surveys have generated this type of information in Japan, so we believe that the results of our study are uniquely important.
Busolo, David; Woodgate, Roberta
The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.More specifically, this systematic review seeks to answer the following questions:1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care? Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and
Kwang, Ang Yee; Kandiah, Mirnalini
This study aimed to evaluate the nutritional status of patients with cancer in palliative care and to examine the interrelationship between objective and subjective nutritional assessment measures. Patients' nutritional status in a palliative care unit of a Malaysian government hospital and a hospice facility were assessed using anthropometric measurements, weight loss at 1/6 months, and the scored patient-generated subjective global assessment (PG-SGA). Moderate-to-severe malnutrition was observed in a range from 31% to 69% using both measurements. Common nutritional impact symptoms were pain, xerostomia, and anorexia. Patient-generated subjective global assessment scores were significantly correlated with anthropometric measurements (P nutritional status assessment of patients with cancer in palliative care.
Moore, Shannon Y; Pirrello, Rosene D; Christianson, Sonya K; Ferris, Frank D
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.
Full Text Available Aim: To study the epidemiological profile, clinical symptoms and referral patterns of patients with gynecological malignancy. To evaluate pain symptoms, response to treatment and factors affecting management in patients with advanced gynecological malignancies. Methods: A retrospective analysis was performed of the gynecological malignancy cases registered at the Pain and Palliative Care Clinic, Calicut, over a 12-month period between January 2006 and December 2006.Patient characteristics, symptoms and response to treatment were evaluated in detail. Results: A total of 1813 patients registered, of which 64 had gynecological malignancies. Most of the cases were referred from the Oncology Department of the Calicut Medical College. Fifty-five percent of the patients were unaware of their diagnosis. Psychosocial issues and anxiety were observed in 48%. Insomnia was seen in 52% of the cases. Pain was the most common and most distressing symptom. Adequate pain relief was achieved in only 32% of the patients. Conclusions: The number of gynecological malignancy cases attending the Pain and Palliative Care Clinic is small. Pain is the most common and distressing symptom, with only 32% of the patients achieving adequate pain relief. Poor drug compliance, incomplete assessment of pain and the lack of awareness of morphine therapy were identified as the most common causes for poor pain control.
Full Text Available Cancer is the third highest cause of death in Kenya, preceded by infectious and cardiovascular diseases, and in most cases, diagnosed in later stages. Nurses are the primary caregivers, assessing and managing these patients in the clinic, in inpatient settings, and in rural and remote communities. While cancer rates remain high, the burden to the patient, the caregiver, and society as a whole continues to rise. Kenya's poverty complicates cancer even further. Many Kenyans are unaware of cancer's signs and symptoms, and limited diagnostic and treatment centers are available. Despite these barriers, there is still hope and help for those in Kenya, who suffer from cancer. The World Health Organization has stated that palliative care is a basic human right and nurses providing this care in Kenya are making efforts to support cancer patients' ongoing needs, in order to promote compassionate palliative care and prevent suffering. The purpose of this paper is to address the palliative care needs of patients with cancer in Kenya by providing education to nurses and influencing health-care policy and education at micro and macro levels. A case study weaved throughout will highlight these issues.
Neergaard, Mette Asbjørn
CANCER PALLIATION IN PRIMARY CARE -WHAT IS GOOD AND BAD?MA Neergaard, MD, specialist in general medicine, PhD student*F Olesen, general practitioner, Dr.Med.Sci., professor* J Soendergaard, general practitioner, senior researcher, PhD*AB Jensen, MD, consultant in oncology, PhD** *The Research Unit...... sectors. Methods. A series of focus group interviews is presently being conducted with participation of relatives of recently deceased cancer patients, GPs, community nurses and hospital physicians working with palliative patients. The interviews are transcribed and analysed according...
Full Text Available Abstract Background This paper describes the development of a new quality of life instrument in advanced cancer patients receiving palliative care. Methods The Palliative Care Quality of Life Instrument incorporates six multi-item and one single-item scale. The questionnaire was completed at baseline and one-week after. The final sample consisted of 120 patients. Results The average time required to complete the questionnaire, in both time points, was approximately 8 minutes. All multi-item scales met the minimal standards for reliability (Cronbach's alpha coefficient ≥.70 either before or during palliative treatment. Test-retest reliability in terms of Spearman-rho coefficient was also satisfactory (p Conclusion The PQLI is a reliable and valid measure for the assessment of quality of life in patients with advanced stage cancer.
Osse, B.H.P.; Vernooy-Dassen, M.J.F.J.; Schade, E.; Grol, R.P.T.M.
OBJECTIVES: To investigate the problems that patients experience and their met- and unmet needs for professional help. This information is necessary to tailor palliative care to patient needs. PATIENTS AND METHODS: Patients (n=94) with disseminated cancer completed a validated checklist with 90
Viney, Linda L.; And Others
Compared quality of life of terminal cancer patients (n=182) in two palliative care units with that of those in general hospital. Patients in specialized palliative care units were found to differ from those dying in hospital, showing less indirectly expressed anger but more positive feelings. They also reported more anxiety about death but less…
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027
Glare, Paul A; Nikolova, Tanya; Alickaj, Alberta; Patil, Sujata; Blinder, Victoria
Employment-related issues have been largely overlooked in cancer patients needing palliative care. These issues may become more relevant as cancer evolves into more of a chronic illness and palliative care is provided independent of stage or prognosis. To characterize the employment situations of working-age palliative care patients. Cross-sectional survey setting/subjects: Consecutive sample of 112 patients followed in palliative care outpatient clinics at a comprehensive cancer center. Thirty-seven-item self-report questionnaire covering demographics, clinical status, and work experiences since diagnosis. The commonest cancer diagnoses were breast, colorectal, gynecological, and lung. Eighty-one percent had active disease. Seventy-four percent were on treatment. Eighty percent recalled being employed at the time of diagnosis, with 65% working full time. At the time of the survey, 44% were employed and 26% were working full time. Most participants said work was important, made them feel normal, and helped them feel they were "beating the cancer". Factors associated with being employed included male gender, self-employed, and taking less than three months off work. Respondents with pain and/or other symptoms were significantly less likely to be working. On multivariate analysis, only pain (odds ratio [OR] 8.16, p gender (OR 2.07), self-employed (OR 3.07), and current chemotherapy (OR 1.81) were included in the model, but were not statistically significant in this small sample. Work may be an important issue for some palliative care patients. Additional research is needed to facilitate ongoing employment for those who wish or need to continue working.
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.
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. PMID:22628412
Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali
By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder's educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: "academic education planning", "workforce education", "public awareness", and "patient and caregiver empowerment" that contained our subcategories as follows: "strengths", "weaknesses", "opportunities" and "threats" (SWOT). Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.
Palliative care has its roots in hospice movement arising in the 1970s in Europe and later also in America. From its beginning it has had connection with patients in terminal phase of cancer disease who suffered from many serious symptoms. Nowadays palliative care is also being provided to patients in terminal phase of certain neurological disorders, AIDS, exceptionally for patients with heart, lung or kidney failure. It has become part of modern medicine and of good clinical practice. (author)
Hilde de Vocht
Full Text Available BackgroundCancer often has a profound and enduring impact on sexuality, affecting both patients and their partners. Most healthcare professionals in cancer and palliative care are struggling to address intimate issues with the patients in their care.MethodsStudy 1: An Australian study using semi-structured interviews and documentary data analysis.Study 2: Building on this Australian study, using a hermeneutic phenomenological approach, data were collected in the Netherlands through interviewing 15 cancer patients, 13 partners and 20 healthcare professionals working in cancer and palliative care. The hermeneutic analysis was supported by ATLAS.ti and enhanced by peer debriefing and expert consultation.ResultsFor patients and partners a person-oriented approach is a prerequisite for discussing the whole of their experience regarding the impact of cancer treatment on their sexuality and intimacy. Not all healthcare professionals are willing or capable of adopting such a person-oriented approach.ConclusionA complementary team approach, with clearly defined roles for different team members and clear referral pathways, is required to enhance communication about sexuality and intimacy in cancer and palliative care. This approach, that includes the acknowledgement of the importance of patients’ and partners’ sexuality and intimacy by all team members, is captured in the Stepped Skills model that was developed as an outcome of the Dutch study.
Nordly, Mie; Vadstrup, Eva Soelberg; Sjøgren, Per
OBJECTIVE: Due to an urgent need for specialized palliative care (SPC) for patients with advanced cancer, an overview of available information on organization and outcomes of home-based SPC would be valuable. Our systematic review aims to give an overview of available information...... on the organization and outcomes of home-based SPC for patients with advanced cancer. Outcomes related to place of death, survival time, quality of life, performance status, and symptom management are included. METHOD: A PICO process search strategy consisting of terms related to cancer, palliation, and home care...... for patients with advanced cancer, resulting in poor information and a lack of evidence. Generally, home-based SPC seems to have some positive effect on pain and dyspnea, but more high-quality studies are required....
Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,186 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,893 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,001 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,752 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,826 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,864 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 4:24 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 63,850 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
Full Text Available ... views 13:34 The Ugly Truth of Pediatric Cancer - Duration: 5:21. KidsCancerChannel 64,137 views 5:21 Childhood Cancer: Palliative Care - Duration: 3:29. American Cancer Society ...
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Kim, Sook-Nam; Choi, Soon-Ock; Shin, Seong Hoon; Ryu, Ji-Sun; Baik, Jeong-Won
A feasible palliative care model for advance cancer patients is needed in Korea with its rapidly aging population and corresponding increase in cancer prevalence. This study describes the process involved in the development of a community-based palliative care (CBPC) model implemented originally in a Busan pilot project. The model development included steps I and II of the pilot project, identification of the service types, a survey exploring the community demand for palliative care, construction of an operational infrastructure, and the establishment of a service delivery system. Public health centers (including Busan regional cancer centers, palliative care centers, and social welfare centers) served as the regional hubs in the development of a palliative care model. The palliative care project included the provision of palliative care, establishment of a support system for the operations, improvement of personnel capacity, development of an educational and promotional program, and the establishment of an assessment system to improve quality. The operational infrastructure included a service management team, provision teams, and a support team. The Busan Metropolitan City CBPC model was based on the principles of palliative care as well as the characteristics of public health centers that implemented the community health projects. The potential use of the Busan CBPC model in Korea should be explored further through service evaluations.
... FAQ Handout for Patients and Families What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is ... life for both the child and the family. Pediatric palliative care is provided by a team of ...
Prado, Bernard Lobato; Gomes, Diogo Bugano Diniz; Usón Júnior, Pedro Luiz Serrano; Taranto, Patricia; França, Monique Sedlmaier; Eiger, Daniel; Mariano, Rodrigo Coutinho; Hui, David; Del Giglio, Auro
Palliative sedation (PS) is an intervention to treat refractory symptoms and to relieve suffering at the end of life. Its prevalence and practice patterns vary widely worldwide. The aim of our study was to evaluate the frequency, clinical indications and outcomes of PS in advanced cancer patients admitted to our tertiary comprehensive cancer center. We retrospectively studied the use of PS in advanced cancer patients who died between March 1st, 2012 and December 31st, 2014. PS was defined as the use of continuous infusion of midazolam or neuroleptics for refractory symptoms in the end of life. This study was approved by the Research Ethics Committee of our institution (project number 2481-15). During the study period, 552 cancer patients died at the institution and 374 met the inclusion criteria for this study. Main reason for exclusion was death in the Intensive Care Unit. Among all included patients, 54.2% (n = 203) received PS. Patients who received PS as compared to those not sedated were younger (67.8 vs. 76.4 years-old, p sedation were dyspnea (55%) and delirium (19.7%) and the most common drugs used were midazolam (52.7%) or midazolam and a neuroleptic (39.4%). Median initial midazolam infusion rate was 0.75 mg/h (interquartile range - IQR - 0.6-1.5) and final rate was 1.5 mg/h (IQR 0.9-3.0). Patient survival (length of hospital stay from admission to death) of those who had PS was more than the double of those who did not (33.6 days vs 16 days, p palliative care team was involved in the care of 12% (n = 25) of sedated patients. PS is a relatively common practice in the end-of-life of cancer patients at our hospital and it is not associated with shortening of hospital stay. Involvement of a dedicated palliative care team is strongly recommended if this procedure is being considered. Further research is needed to identify factors that may affect the frequency and outcomes associated with PS.
Palliative care for people with cancer (3rd edition) Jenny Penson Palliative care for people with cancer (3rd edition) Ronald Fisher (editors) Arnold 427pp £18.99 0340763965 0340763965 [Formula: see text].
This has been a successful textbook since publication of its first edition 11 years ago. This updated edition remains a useful resource for newcomers to palliative care in relation to cancer for nurses and other health professionals.
Fishman, Jessica M; Greenberg, Patricia; Bagga, Margy Barbieri; Casarett, David; Propert, Kathleen
When attempting to share information about comfort-oriented care, many use "palliative," "supportive," and "hospice" care terminology interchangeably, but we lack evidence about the effects of using these different terms. This study was designed to test whether the use of "palliative," "supportive," or "hospice" terminology can improve the dissemination of information among breast cancer patients-a large and growing oncology population. Design, Setting, and Measurement: This experimental study was conducted at a major U.S. hospital serving a diverse population. Patients visiting a cancer clinic encountered opportunities to learn more about cancer care. They were offered health materials that were described as reporting on "palliative," "supportive," or "hospice" care and the primary outcome was whether a patient decided to select or reject each. As a secondary outcome, the study measured the patient's level of interest in receiving each. Compared with alternatives, materials labeled as "supportive" care were most likely to be selected and considered valuable (p value information labeled as being about "supportive" care was significantly more likely to be selected. If these effects are supported by additional research, there may be low-cost, highly feasible changes in language choice that increase the dissemination of relevant health information.
Mantovan, Franco; Rauter, Elisabeth; Müller, Irene
In palliative care between 13.9 and 25 percent of all patients suffering from cancer show signs of anxiety disorders. Up to 75 percent of these patients suffer from non-pathologic anxiety, which has a negative impact on the patients' quality of life. Therefore it is important to provide interventions that are able to reduce anxiety of cancer patients. Massage and music therapy are effective interventions for minimizing anxiety of cancer patients in palliative care. An empathic attitude of the nurse increases the effect of the mentioned interventions. While there is evidence of the interventions mentioned it is yet necessary to further explore these in additional clinical trials to consolidate the already existing results.
Oshiro, Hisako; Oshiro, Tatsuo; Tanimizu, Masahito
The purpose of this article is to show some unintentional aspects of palliative supports offered by the community. The activities of the Opera Ehime, an amateur opera group, play an important role in palliative and grief care. This community is also committed to providing supportive care for home hospice cancer patients through an outreach music program that offers patients connection with others and reduces isolation. Assessment by the coordinator includes determiningthe patients' preferences and the relevance of music throughout their lives. Then, the coordinator predicts the cancer trajectory and invites patients to participate in the home hospice concert at any stage of their illness. These activities are an effective form of supportingcancer care for patients to promote wellness and improve physical and emotional well-being, as well as quality of life.
Palliative care concentrates on supporting and helping people with an incurable disease and aims to improve patient’s quality of life by reducing or eliminating pain and other physical symptoms. Palliative care is a new phenomenon in Romania . PhD student Luminita Dumitrescu describes the
AIMS: Studies suggest that patients with advanced heart failure (HF) have unmet palliative care (PC) needs. However, many of these studies have been retrospective or based on patients receiving poorly coordinated ad hoc care. We aimed to demonstrate whether the PC needs of patients with advanced HF receiving specialist multidisciplinary coordinated care are similar to cancer patients deemed to have specialist PC needs; thereby justifying the extension of specialist PC services to HF patients. METHODS AND RESULTS: This was a cross-sectional comparative cohort study of 50 HF patients and 50 cancer patients, using quantitative and qualitative methods. Both patient cohorts were statistically indistinguishable in terms of symptom burden, emotional wellbeing, and quality-of-life scores. HF patients had good access to community and social support. HF patients particularly valued the close supervision, medication monitoring, ease of access to service, telephone support, and key worker provided at the HF unit. A small subset of patients had unmet PC needs. A palliative transition point is described. CONCLUSION: HF patients should not be excluded from specialist PC services. However, the majority of their needs can be met at a HF unit. Recognition of the palliative transition point may be key to ensuring that end-of-life issues are addressed. The palliative transition point needs further evaluation.
Sakashita, Akihiro; Kishino, Megumi; Nakazawa, Yoko; Yotani, Nobuyuki; Yamaguchi, Takashi; Kizawa, Yoshiyuki
To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. Semistructured focus group interviews were conducted, and content analysis was performed. A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs. © The Author(s) 2015.
Turner, Mary; Payne, Sheila; O'Brien, Terri
There is increasing recognition of the importance of good communication between healthcare professionals and patients facing cancer or end of life. In England, a new national 3-day training programme called 'Connected' has been developed and is now mandatory for all cancer and palliative care professionals. This study aimed to explore the attitudes of staff in one region to undertaking this training. A survey questionnaire was developed through a series of discussions with experts and semi-structured interviews with five healthcare professionals. The questionnaire was distributed to 200 cancer and palliative care staff; 109 were completed and returned. There were significant differences between doctors' and nurses' attitudes to communication skills training, with doctors demonstrating more negative attitudes. More nurses than doctors felt that communication skills training should be mandatory for cancer and palliative care professionals (p ≤ 0.001), whilst more doctors felt that these staff should already be skilled communicators and not require further training (p ≤ 0.001). Nurses also self-rated their communication skills more highly than doctors. The current 'one size fits all' approach being taken nationally to advanced communication skills training does not meet the training preferences of all healthcare professionals, and it is recommended that tailoring courses to individuals' needs should be considered. Copyright Â© 2010 Elsevier Ltd. All rights reserved.
... A Guide to Advance Directives, the Health Care Power of Attorney, and Other Key Documents . Cambridge, MA: Harvard Health Publications. 2013. Oxenham D. Palliative care and pain. In: Walker BR, Colledge NR, Ralston SH, Penman ...
Amano, Koji; Morita, Tatsuya; Baba, Mika; Kawasaki, Muneyoshi; Nakajima, Shinichiro; Uemura, Minako; Kobayashi, Yuka; Hori, Moeko; Wakayama, Hiroshi
The role of nutritional support on terminally ill patients with cancer in a palliative care unit has not been clarified. A total of 63 patients were retrospectively investigated; the patients receiving individualized nutritional support (intervention group [n = 22]) were compared to the others (control group [n = 41]). The intervention group received individualized nutritional support. There were no significant differences in the characteristics of patients between the groups. The prevalence of bedsores was significantly lower in the intervention group (14% vs 46%, P = .012). The prevalence of edema and the use of antibiotic therapies tended to be lower in the intervention group than in the control group (36% vs 54%, P = .19; 14% vs 27%, P = .34, respectively). Some terminally ill patients with cancer in a palliative care unit might benefit from nutritional support.
Mercadante, Sebastiano; Aielli, Federica; Adile, Claudio; Ferrera, Patrizia; Valle, Alessandro; Cartoni, Claudio; Pizzuto, Massimo; Caruselli, Amanda; Parsi, Renato; Cortegiani, Andrea; Masedu, Francesco; Valenti, Marco; Ficorella, Corrado; Porzio, Giampiero
Information regarding sleep disturbances in the population with advanced cancer is meager. To assess the prevalence of sleep disturbances and possible correlations with associated factors in a large number of patients with advanced cancer admitted to different palliative care settings. This was an observational study performed in different settings of palliative care. A consecutive sample of patients with advanced cancer was prospectively assessed for a period of six months. Epidemiological and clinical data, treatments received in the last month, Karnofsky status, Edmonton Symptom Assessment System scores, and concomitant medical treatment were recorded. Patients were administered the Athens Insomnia Scale and the Hospital Anxiety and Depression Scale (HADS). A total of 820 patients were surveyed. Mean age was 69.7 years (SD 12.7), and 429 patients were males. Consistent sleep disturbances (moderate to maximum) were found in 60.8% of patients. Aged patients were less likely to have sleep disturbances, whereas a poor Karnofsky level was significantly associated with sleep problems. Breast, gastrointestinal, head and neck, lung, and prostate cancers were associated with sleep problems. Patients who had a secondary school or undergraduate education had less sleep disturbances. Hormone therapy and use of opioids and corticosteroids were positively associated with sleep disturbances, and there was a positive correlation of HADS-Anxiety and HADS-Depression scores with sleep disturbances. More than 60% of palliative care patients have relevant sleep disturbances. Several factors associated with sleep disorders have been identified and should prompt physicians to make a careful examination and subsequent treatment of these disturbances. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Full Text Available Heart failure is an important health problem since its incidence and prevalence is increasing year by year. Since symptom burden and mortality are high in heart failure, supportive and palliative care should be provided. However, very few patients are referred to palliative care services. In comparison with cancer patients, it is difficult to identify end of life care for patients with heart failure, because these patients are hospitalized when the signs of acute decompensation appear, and their symptoms decrease and functional status improve before they are discharged. Therefore, palliative care, which is a holistic approach aiming to improve patients’ quality of life, to detect and treat the attacks of the disease before they become severe, and to deal with patients’ physical, psychological, social, and mental health altogether during their care, should be integrated into heart failure patients’ care. [TAF Prev Med Bull 2012; 11(2.000: 217-222
Ansari, Mojgan; Rassouli, Maryam; Akbari, Mohamad Esmaiel; Abbaszadeh, Abbas; Akbari Sari, Ali
ABSTRACT Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included: ”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT). Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced. PMID:29607340
Full Text Available Background: By acceptance of palliative care as a part of health system of each country and due to increasing prevalence of cancer, special focus on stakeholder’s educational needs is of vital importance so that palliative care services are improved and the quality of life of patients is enhanced. This study was conducted to explore the educational needs of stakeholders of palliative care for cancer patients in Iran. Methods: This qualitative study with 20 semi-structured interviews was conducted from August 2016 to February 2017 in Shohadaye Tajrish and Emam Khomeini Hospitals of Tehran. Participants were selected through purposive sampling and included cancer patients and their family caregivers as well as healthcare providers, experts and policy-makers. The data were analyzed through Conventional Content Analysis of Landman and Graneheim using MAXQDA10 software. Statements of each main category of the study were summarized in SWOT categorizes. Result: A total of 546 codes were extracted from the analysis of the interviews and four main categories and four subcategories were identified. The four main identified categories included:”academic education planning”, “workforce education”, “public awareness”, and “patient and caregiver empowerment” that contained our subcategories as follows: “strengths”, “weaknesses”, “opportunities” and “threats” (SWOT. Conclusion: Meeting the educational needs of the stakeholders of palliative care requires policy-makers to identify the factors leading to strategies that are based on the use of opportunities, the removal of weaknesses, and coping with the threats to which the organization is faced.
Şenel, Gülcin; Uysal, Neşe; Oguz, Gonca; Kaya, Mensure; Kadioullari, Nihal; Koçak, Nesteren; Karaca, Serife
Introductıon: Delirium is a complex but common disorder in palliative care with a prevalence between 13% and 88% but a particular frequency at the end of life yet often remains insufficiently diagnosed and managed. The aim of our study is to determine the frequency of delirium and identify factors associated with delirium at palliative care unit. Two hundred thirteen consecutive inpatients from October 1, 2012, to March 31, 2013, were studied prospectively. Age, gender, Palliative Performance Scale (PPS), Palliative Prognostic Index (PPI), length of stay in hospital, and delirium etiology and subtype were recorded. Delirium was diagnosed with using Delirium Rating Scale (DRS) and Diagnostic and Statistical Manual of Mental Disorders, 4th Edition Text Revision ( DSM-IV TR) criteria. The incidence of delirium among the patients with cancer was 49.8%. Mean age was 60.3 ± 14.8 (female 41%, male 59%, PPS 39.8%, PPI 5.9 ± 3.0, length of stay in hospital 8.6 ± 6.9 days). Univariate logistic regression analysis indicated that use of opioids, anticonvulsants, benzodiazepines, steroids, polypharmacy, infection, malnutrition, immobilization, sleep disturbance, constipation, hyperbilirubinemia, liver/renal failure, pulmonary failure/hypoxia, electrolyte imbalance, brain cancer/metastases, decreased PPS, and increased PPI were risk factors. Subtypes of delirium included hypoactive 49%, mixed 41%, and hyperactive 10%. The communicative impediments associated with delirium generate distress for the patient, their family, and health care practitioners who might have to contend with agitation and difficulty in assessing pain and other symptoms. To manage delirium in patients with cancer, clinicians must be able to diagnose it accurately and undertake appropriate assessment of underlying causes.
Tomlinson, Deborah; Bartels, Ute; Gammon, Janet; Hinds, Pamela S; Volpe, Jocelyne; Bouffet, Eric; Regier, Dean A; Baruchel, Sylvain; Greenberg, Mark; Barrera, Maru; Llewellyn-Thomas, Hilary; Sung, Lillian
The choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children's quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences. We included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child's quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique. A total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p parents' desire for supportive care; for health care professionals, the opinions of parents and children were significant factors influencing this decision. Compared with health care professionals, parents more
Quillin, John M; Emidio, Oluwabunmi; Ma, Brittany; Bailey, Lauryn; Smith, Thomas J; Kang, In Guk; Yu, Brandon J; Owodunni, Oluwafemi Patrick; Abusamaan, Mohammed; Razzak, Rab; Bodurtha, Joann N
Even at the end of life, testing cancer patients for inherited susceptibility may provide life-saving information to their relatives. Prior research suggests palliative care inpatients have suboptimal understanding of genetic importance, and testing may be underutilized in this clinical setting. These conclusions are based on limited research. This study aimed to estimate genetic testing prevalence among high-risk palliative care patients in a National Cancer Institute-designated comprehensive cancer center. We also aimed to understand these patients' understanding of, and attitudes toward, hereditary cancer testing and DNA banking. Palliative care in-patients with cancer completed structured interviews, and their medical records were reviewed. Among patients at high risk for hereditary cancer, we assessed history of genetic testing/DNA banking; and related knowledge and attitudes. Among 24 high-risk patients, 14 (58.3%) said they/their relatives had genetic testing or they had been referred for a genetics consultation. Of the remaining 10 patients, seven (70%) said they would "probably" or "definitely" get tested. Patients who had not had testing were least concerned about the impact of future testing on their family relationships; two (20%) said they were "extremely concerned" about privacy related to genetic testing. Of patients without prior testing, five (50%) said they had heard or read "a fair amount" about genetic testing. No high-risk patients had banked DNA. Overall, 23 (95.8%) said they had heard or read "almost nothing" or "relatively little" about DNA banking. Written materials and clinician discussion were most preferred ways to learn about genetic testing and DNA banking. Overall, this study demonstrates underutilization of genetics services at the end of life continues to be problematic, despite high patient interest.
Mariyana, Rina; Allenidekania, Allenidekania; Nurhaeni, Nani
Pain experienced by children can adversely affect their growth and development. Pain is a major health problem for cancer patients and remains an unresolved problem. To know how the experiences of mothers managing their children's pain during palliative care following cancer diagnosis. Pain experienced by children can adversely affect their growth and development. Using qualitative methods within a descriptive phenomenological approach, in-depth interviews were conducted with parents (mostly mothers) of eight children diagnosed with cancer. The data were collected using the snowball sampling method. Participants experienced in managing the pain of children with cancer. Analysis of the results identified 8 themes: the dimensions of pain experienced by children undergoing palliative care; mothers' physical and psychological responses; mothers' emotional responses; barriers encountered by mothers when taking care of their child at home; mothers' interventions to reduce their child's pain; mothers' efforts to distract their child from pain; giving encouragement when the child is in pain; and mothers' efforts and prayers to make their child comfort. It can be concluded that the child's pain is the main cause of mothers' stress and pressure and also affects the daily lives of mothers and children. Along with the most effective intervention, nurses need to provide mothers and children with adequate information about cancer pain.
Full Text Available Context: Pain experienced by children can adversely affect their growth and development. Pain is a major health problem for cancer patients and remains an unresolved problem.Aim: To know how the experiences of mothers managing their children's pain during palliative care following cancer diagnosis.Background: Pain experienced by children can adversely affect their growth and development.Subject and Methods: Using qualitative methods within a descriptive phenomenological approach, in-depth interviews were conducted with parents (mostly mothers of eight children diagnosed with cancer. The data were collected using the snowball sampling method.Results: Participants experienced in managing the pain of children with cancer. Analysis of the results identified 8 themes: the dimensions of pain experienced by children undergoing palliative care; mothers' physical and psychological responses; mothers' emotional responses; barriers encountered by mothers when taking care of their child at home; mothers' interventions to reduce their child's pain; mothers' efforts to distract their child from pain; giving encouragement when the child is in pain; and mothers' efforts and prayers to make their child comfort.Conclusion: It can be concluded that the child's pain is the main cause of mothers' stress and pressure and also affects the daily lives of mothers and children. Along with the most effective intervention, nurses need to provide mothers and children with adequate information about cancer pain.
Donker, G.A.; Rijken, P.M.; Korevaar, J.C.; Custers, J.; Hofstede, J.; Francke, A.L.
Background: Cancer causes approximately one third of all deaths in industrialized countries. Hence advanced cancer patients and their relatives are a main target group of palliative care. Methods: In qualitative interviews with 13 Dutch patients and 14 relatives confronted with advanced cancer
Beernaert, Kim; Haverbeke, Chloë; Van Belle, Simon; Deliens, Luc; Cohen, Joachim
We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients. Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where "palliative care for all" is a patient's right embedded in the law and euthanasia is possible under certain conditions. Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics. Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease. Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information. Copyright © 2017 Elsevier B.V. All rights reserved.
von Heymann-Horan, Annika Berglind; Puggaard, Louise Berg; Nissen, Kathrine Grovn
Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We...... present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility. The Domus model of SPC for patients with incurable cancer...... and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate...
Ticiane Dionizio de Sousa Matos
Full Text Available ABSTRACT Objectives: to compare the quality of life and religious-spiritual coping of palliative cancer care patients with a group of healthy participants; assess whether the perceived quality of life is associated with the religious-spiritual coping strategies; identify the clinical and sociodemographic variables related to quality of life and religious-spiritual coping. Method: cross-sectional study involving 96 palliative outpatient care patient at a public hospital in the interior of the state of São Paulo and 96 healthy volunteers, using a sociodemographic questionnaire, the McGill Quality of Life Questionnaire and the Brief Religious-Spiritual Coping scale. Results: 192 participants were interviewed who presented good quality of life and high use of Religious-Spiritual Coping. Greater use of negative Religious-Spiritual Coping was found in Group A, as well as lesser physical and psychological wellbeing and quality of life. An association was observed between quality of life scores and Religious-Spiritual Coping (p<0.01 in both groups. Male sex, Catholic religion and the Brief Religious-Spiritual Coping score independently influenced the quality of life scores (p<0.01. Conclusion: both groups presented high quality of life and Religious-Spiritual Coping scores. Male participants who were active Catholics with higher Religious-Spiritual Coping scores presented a better perceived quality of life, suggesting that this coping strategy can be stimulated in palliative care patients.
Full Text Available Background. Palliative care in Slovene health care system isn’t developed. Comparison with other countries is not possible in many aspects. There is no complete or appropriately educated palliative care team in hospitals or in primary care. Palliative care departments in hospitals and nursing homes do not exist. Holistic palliative home care is offered only by Slovene association of hospice. The pressure on nursing homes and nursing service departments is getting stronger. Standards and norms for staff, for living conditions and medical equipment do not allow any more admittances of patients with the needs of high category of care in these institutions.Conclusions. Indirect indicators of level of palliative care (e.g. morphine consumption, palliative care departments, home care network, undergraduate education, specialisation and research put Slovenia at the bade of the Europe. Statistics predict aging of population and more patients are also living with consequences of progressive chronic diseases and cancer.In the new healthcare reform there is an opportunity for palliative care to get an equal place in healthcare system. With coordinated implementation of palliative care departments, consultant teams and mobile specialistic teams, palliative care could reach a better level of quality. At the same time, quality permanent education is essential.
Rabow, Michael W; Knish, Sarah J
Spiritual well-being is threatened by cancer, but its correlation with other illness symptoms and the efficacy of palliative care (PC) to ameliorate spiritual suffering are not well understood. We conducted a retrospective study using a convenience sample of oncology patients at a comprehensive cancer center who received concurrent oncologic and palliative care between 2008 and 2011 and completed ESAS, QUAL-E, and Steinhauser Spiritual well-being survey questions was conducted. Descriptive, correlation, and t test statistics. Eight hundred eighty-three patients surveyed had an average age of 65.6 years, with 54.1 % female, 69.3 % white, and 49.3 % married. Half (452, 51.2 %) had metastatic disease. Religious affiliation was reported as Christian by 20.3 %, Catholic by 18.7 %, and "none" by 39.0 %. Baseline spiritual well-being was not significantly correlated with age, gender, race, cancer stage, marital status, insurance provider, or having a religious affiliation. Greater spiritual well-being was correlated with greater quality of life (well-being (spiritual well-being and anxiety, depression, fatigue, and quality of life (R (2) = 0.677). Spiritual well-being improved comparing mean scores immediately prior to initial PC consultation with those at first follow-up (2.89 vs. 3.23 on a 1-5 scale, p = 0.005). Among patients with cancer receiving concurrent oncologic and palliative care, spiritual well-being was not associated with patient age, gender, or race, or disease stage. It was correlated with physical and emotional symptoms. Spiritual well-being scores improved from just prior to the initial PC consultation to just prior to the first PC follow-up visit.
Kassam, Alisha; Skiadaresis, Julia; Habib, Sharifa; Alexander, Sarah; Wolfe, Joanne
The National Consensus Project (NCP) published a set of standards for quality palliative care delivery. A key step before applying these guidelines to pediatric oncology is to evaluate how much families and clinicians value these standards. We aimed to determine which elements of palliative care are considered important according to bereaved parents and pediatric oncology clinicians and to determine accessibility of these elements. We administered questionnaires to 75 bereaved parents (response rate, 54%) and 48 pediatric oncology clinicians (response rate, 91%) at a large teaching hospital. Outcome measures included importance ratings and accessibility of core elements of palliative care delivery. Fifteen of 20 core elements were highly valued by both parents and clinicians (defined as > 60% of parents and clinicians reporting the item as important). Compared with clinicians, parents gave higher ratings to receiving cancer-directed therapy during the last month of life (P involvement of a spiritual mentor (P = .03). Of the valued elements, only three were accessible more than 60% of the time according to clinicians and parents. Valued elements least likely to be accessible included a direct admission policy to hospital, sibling support, and parent preparation for medical aspects surrounding death. Parents and clinicians highly value a majority of palliative care elements described in the NCP framework. Children with advanced cancer may not be receiving key elements of palliative care despite parents and clinicians recognizing them as important. Evaluation of barriers to provision of quality palliative care and strategies for overcoming them are critical.
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Heins, Marianne; Hofstede, Jolien; Rijken, Mieke; Korevaar, Joke; Donker, Gé; Francke, Anneke
In many countries, GPs and home care nurses are involved in care for patients with advanced cancer. Given the varied and complex needs of these patients, providing satisfactory care is a major challenge for them. We therefore aimed to study which aspects of care patients, GPs and home care nurses consider important and whether patients receive these aspects. Seventy-two Dutch patients with advanced cancer, 87 GPs and 26 home care nurses rated the importance of support when experiencing symptoms, respect for patients' autonomy and information provision. Patients also rated whether they received these aspects. Questionnaires were based on the CQ index palliative care. Almost all patients rated information provision and respect for their autonomy as important. The majority also rated support when suffering from specific symptoms as important, especially support when in pain. In general, patients received the care they considered important. However, 49% of those who considered it important to receive support when suffering from fatigue and 23% of those who wanted to receive information on the expected course of their illness did not receive this or only did so sometimes. For most patients with advanced cancer, the palliative care that they receive matches what they consider important. Support for patients experiencing fatigue may need more attention. When symptoms are difficult to control, GPs and nurses may still provide emotional support and practical advice. Furthermore, we recommend that GPs discuss patients' need for information about the expected course of their illness.
DiMartino, Lisa D; Weiner, Bryan J; Mayer, Deborah K; Jackson, George L; Biddle, Andrea K
Frequent emergency department (ED) visits are an indicator of poor quality of cancer care. Coordination of care through the use of palliative care teams may limit aggressive care and improve outcomes for patients with cancer at the end of life. To systematically review the literature to determine whether palliative care interventions implemented in the hospital, home, or outpatient clinic are more effective than usual care in reducing ED visits among patients with cancer at the end of life. PubMed, EMBASE, and CINAHL databases were searched from database inception to May 7, 2014. Only randomized/non-randomized controlled trials (RCTs) and observational studies examining the effect of palliative care interventions on ED visits among adult patients with cancer with advanced disease were considered. Data were abstracted from the articles that met all the inclusion criteria. A second reviewer independently abstracted data from 2 articles and discrepancies were resolved. From 464 abstracts, 2 RCTs, 10 observational studies, and 1 non-RCT/quasi-experimental study were included. Overall there is limited evidence to support the use of palliative care interventions to reduce ED visits, although studies examining effect of hospice care and those conducted outside of the United States reported a statistically significant reduction in ED visits. Evidence regarding whether palliative care interventions implemented in the hospital, home or outpatient clinic are more effective than usual care at reducing ED visits is not strongly substantiated based on the literature reviewed. Improvements in the quality of reporting for studies examining the effect of palliative care interventions on ED use are needed.
Marcelle Miranda da Silva
Full Text Available The objective was to understand the perspective of nurses about the participation of the family in palliative cancer care and to analyze the nursing care strategies to meet their needs. Descriptive and qualitative research, conducted at the National Cancer Institute between January and March 2013, with 17 nurses. Elements of the Roy Adaptation Model were used for the interpretation of the data. Two categoriesemergedfrom the thematic analysis: perspective of nurses about the presence and valuation of family in the hospital; and appointing strategies to encourage family participation in care and meet their needs. This participation is essentialand represents a training opportunity for the purpose of homecare. Nurses create strategies to encourage it and seek to meet the needs. The results contribute to promote the family adaptation and integrity, in order to balance the dependent and independent behaviors, aimingfor quality of life and comfort. Further studies are neededdue to the challenges of the specialty.
'The rise of cancer in less affluent countries is an impending disaster' Malawi Medical Journal Vol. 20 (4) 2008: pp. 108-108. Full Text: EMAIL FREE FULL TEXT EMAIL FREE FULL TEXT · DOWNLOAD FULL TEXT DOWNLOAD FULL TEXT · http://dx.doi.org/10.4314/mmj.v20i4.10978 · AJOL African Journals Online. HOW TO ...
Mahmut Yaşar Çeliker
Full Text Available Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives.
Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives. PMID:28804708
Gülçin Senel Özalp
Full Text Available Objective: Cancer patients often experience a large number of symptoms together. The aim of this study is to determine the symptom clusters in cancer patients at palliative care clinic. Methods: Hundred and seventy consecutive patients were enrolled in the study. Memorial Symptom Assessment Scale was used for symptom assessment of the patients. Results: The most experienced symptoms by the patients during the past week before hospitalization in palliative care clinic were lack of energy (95.4%, weight loss (91.2%, lack of appetite (89.4%, pain (88.2%, dry mouth (87.6%, feeling sad (87.6%, feeling nervous (82.9%, worrying (81.2%, and feeling irritable (80.6%. Five symptom clusters were defined. First cluster: pain, feeling nervous, dry mouth, worrying, feeling irritable, weight loss; second cluster: feeling drowsy, numbness/tingling in hands/feet, difficulty in sleeping, dizziness, constipation, I do not look like myself; third cluster: nausea, vomiting; fourth cluster: shortness of breath, difficulty in swallowing, cough, change in the way food tastes; and fifth cluster: feeling bloated, problems with urination, diarrhea, itching, mouth sores, hair loss, swelling of arm or legs, change in the skin. Conclusions: We encountered various symptom clusters in advanced cancer patients. Identification of symptom clusters and knowledge of cluster composition in oncological population may particularly contribute individualization of the treatment.
Calvo-Espinos, Claudio; Ruiz de Gaona, Estefania; Gonzalez, Cristina; Ruiz de Galarreta, Lucia; Lopez, Cristina
Palliative sedation is a common treatment in palliative care. The home is a difficult environment for research, and there are few studies about sedation at home. Our aim was to analyze this practice in a home setting. We conducted a retrospective cross-sectional descriptive study in a home cohort during 2011. The inclusion criteria were as follows: 18 years or older and enrolled in the Palliative Home Care Program (PHCP) with advanced cancer. The variables employed were: sex, age, primary tumor location, and place of death. We also registered indication, type, drug and dose, awareness of diagnosis and prognosis, consent, survival, presence or absence of rales, painful mouth, and ulcers in patients sedated at home. We also collected the opinions of family members and professionals about the suffering of sedated patients. A total of 446 patients (56% at home) of the 617 admitted to the PHCP between January and December of 2011 passed away. The typical patient in our population was a 70-year-old man with a lung tumor. Some 35 (14%) home patients required sedation, compared to 93 (49%) at the hospital. The most frequent indication was delirium (70%), with midazolam the most common drug (mean dose, 40 mg). Survival was around three days. Rales were frequent (57%) as well as awareness of diagnosis and prognosis (77 and 71%, respectively). Perception of suffering after sedation was rare among relatives (17%) and professionals (8%). In most cases, the decision was made jointly by professionals and family members. Our study confirmed the role of palliative sedation as an appropriate therapeutic tool in the home environment.
Fukui, Sakiko; Fujita, Junko; Tsujimura, Mayuko; Sumikawa, Yuka; Hayashi, Yayoi
To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings. A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%). Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings. This study demonstrated the importance of both the hospital and community nurses' role in increasing the patients' chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients' clinical status, and caregivers' ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control. Crown Copyright © 2011. Published by Elsevier Ltd. All rights reserved.
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Khan, Robyna Irshad
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
Martoni, A A; Varani, S; Peghetti, B; Roganti, D; Volpicella, E; Pannuti, R; Pannuti, F
This study evaluates the spiritual well-being (SpWB) in very advanced cancer patients assisted by the home palliative care program of ANT Foundation, a no-profit Italian organisation. SpWB was assessed by the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp12), including Meaning, Peace, and Faith subscales. The quality-of-life (QoL) was evaluated by using the Functional Assessment of Cancer Therapy-General scale. Questionnaires were distributed to 1,055 patients and 683 were compiled and evaluable for analysis. The mean scores of FACIT-Sp12 as well as of QoL were notably lower than reference values for cancer survivors. The FACIT-Sp12 score was higher in patients with less impaired Karnofsky Performance Status, fully participating in religious rituals and living in central Italy. A high Pearson's correlation was found between QoL and FACIT-Sp12 (r = .60), Peace (r = .71) and Meaning (r = .52), while it was marginal for Faith (r = .27). The hierarchical regression analysis showed that FACIT-Sp12 is a significant predictor of QoL. The study suggests that Italian patients with advanced cancer assisted by expert multi-professional teams in the home palliative care setting have a low level of SpWB thereby highlighting the need for the integration of spiritual support as part of comprehensive cancer care. © 2017 John Wiley & Sons Ltd.
work of all involved in palliative care and understanding this will ... palliative care. The quality of life for patients and the manner of ... In palliative care, the creation of a safe space for families to talk is important. Communication ... family finds balance only with, and in your ... those relationships that are signifi- cant for the ...
Full Text Available The diagnosis of cancer is associated with an unexpected breakdown of the physical, psychological and social well being. In addition to cancer related physical outcomes, cross-cultural issues are known to hasten patients’ clinical deterioration and can impact upon orientation as a healthy human being in society. As members of a developing nation in the second world, to provide patient oriented quality care while maintaining high standards of ethical practice, health care workers in Sri Lanka have to be culturally competent. In Sri Lanka, the cross-cultural ethical issues related to patients with a diagnosis of cancer include, awareness of one’s own cultural identity, gaining knowledge of different cultural issues, verbal and non verbal communication skills, respect for patients’ autonomy, involvement of the family and the relatives, addressing moral and spiritual backgrounds, development of effective communication skills and provision of social support. Therefore in the management of cancer patients in Sri Lanka, cultural issues should be given a high priority to maintain ethical standards and quality in palliative care. Culturally competent Health care workers safeguard the rights of patients, as well as providing optimal medical and surgical care.
Full Text Available Critical junctures in patients′ lives such as chronic illnesses and advanced diseases may leave the persons in a state of imbalance or disharmony of body, mind and spirit. With regard to spirituality and healing, there is a consensus in literature about the influence of spirituality on recovery and the ability to cope with and adjust to the varying and demanding states of health and illness. Empirical evidence suggests that spiritual support may act as an adjunct to the palliative care of those facing advanced diseases and end of life. In this article, the author draws from his empirical work on spirituality and culture to develop a discourse on palliative care and spirituality in both secular and non-secular settings. In doing so, this paper offers some understanding into the concept of spirituality, spiritual needs and spiritual care interventions in palliative care in terms of empirical evidence. Responding to spiritual needs could be challenging, but at the same time it could be rewarding to both healthcare practitioner (HCP and patient in that they may experience spiritual growth and development. Patients may derive great health benefits with improvements in their quality of life, resolutions and meaning and purpose in life. It is hoped that the strategies for spiritual support outlined in this paper serve as practical guidelines to HCPs for development of palliative care in South Asia.
Rouhollahi, Mohammad Reza; Saghafinia, Masoud; Zandehdel, Kazem; Motlagh, Ali Ghanbari; Kazemian, Ali; Mohagheghi, Mohammad Ali; Tahmasebi, Mamak
The first hospital palliative care unit (HPCU) in Iran (FARS-HPCU) has been established in 2008 in the Cancer Institute, which is the largest referral cancer center in the country. We attempted to assess the performance of the HPCU based on a comprehensive conceptual framework. The main aim of this study was to develop a conceptual framework for assessment of the HPCU performances through designing a value chain in line with the goals and the main processes (core and support). We collected data from a variety of sources, including international guidelines, international best practices, and expert opinions in the country and compared them with national policies and priorities. We also took into consideration the trend of the HPCU development in the Cancer Institute of Iran. Through benchmarking the gap area with the performance standards, some recommendations for better outcome are proposed. The framework for performance assessment consisted of 154 process indicators (PIs), based on which the main stakeholders of the HPCU (including staff, patients, and families) offered their scoring. The outcome revealed the state of the processes as well as the gaps. Despite a significant improvement in many processes and indicators, more development in the comprehensive and integrative aspects of FARS-HPCU performance is required. Consideration of all supportive and palliative requirements of the patients through interdisciplinary and collaborative approaches is recommended.
Pyszora, Anna; Budzyński, Jacek; Wójcik, Agnieszka; Prokop, Anna; Krajnik, Małgorzata
Cancer-related fatigue (CRF) is a common and relevant symptom in patients with advanced cancer that significantly decreases their quality of life. The aim of this study was to evaluate the effect of a physiotherapy programme on CRF and other symptoms in patients diagnosed with advanced cancer. The study was designed as a randomized controlled trial. Sixty patients diagnosed with advanced cancer receiving palliative care were randomized into two groups: the treatment group (n = 30) and the control group (n = 30). The therapy took place three times a week for 2 weeks. The 30-min physiotherapy session included active exercises, myofascial release and proprioceptive neuromuscular facilitation (PNF) techniques. The control group did not exercise. The outcomes included Brief Fatigue Inventory (BFI), Edmonton Symptom Assessment Scale (ESAS) and satisfaction scores. The exercise programme caused a significant reduction in fatigue scores (BFI) in terms of severity of fatigue and its impact on daily functioning. In the control group, no significant changes in the BFI were observed. Moreover, the physiotherapy programme improved patients' general well-being and reduced the intensity of coexisting symptoms such as pain, drowsiness, lack of appetite and depression. The analysis of satisfaction scores showed that it was also positively evaluated by patients. The physiotherapy programme, which included active exercises, myofascial release and PNF techniques, had beneficial effects on CRF and other symptoms in patients with advanced cancer who received palliative care. The results of the study suggest that physiotherapy is a safe and effective method of CRF management.
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Adsersen, Mathilde; Thygesen, Lau Caspar; Jensen, Anders Bonde
BACKGROUND: Specialised palliative care (SPC) takes place in specialised services for patients with complex symptoms and problems. Little is known about what determines the admission of patients to SPC and whether there are differences in relation to institution type. The aims of the study were t...
Figueredo Villa, Katiuska
The quality of life is affected frequently observed in women with advanced breast cancer and is considered a leading indicator of effectiveness of palliative care. A descriptive, quasi-experimental study is presented ex-ante / ex-post, by applying open-ended interviews to explore the effects on the processes of adaptation of each patient and a self-administrable scale identified specific dimensions of quality of life, satisfaction with care and overall quality of life. The intervention was performed palliative home care to 52 women, according to the damages identified in the baseline diagnosis. The overall strategy included four steps: clinical and socio-demographic characterization of women; identification of the effects on the processes of adaptation by the theoretical model of Roy and dimensions of quality of life frequently affected, to design individually oriented actions on the drive shaft of Nursing Interventions Classification and evaluation of results intervention. The dimensions achieved higher frequency of involvement were: behavior, physical symptoms, pain interference and leisure activities, social life and family. Data were analyzed with qualitative methodologies and uni and multivariate statistical processing. After the intervention favorable changes in adaptive processes and dimensions of quality of life were observed; well as in the assessment of overall satisfaction with life. It was interesting that the dimensions of satisfaction assessed at the end of the intervention obtained an unfavorable assessment, outcome associated with sociodemographic variables. (author)
Grønvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette
with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality...
Plaskota, Marek; Lucas, Caroline; Evans, Rosie; Cook, Karen; Pizzoferro, Kathleen; Saini, Treena
This pilot study aimed to assess the benefits of hypnotherapy in the management of anxiety and other symptoms, including depression and sleep disturbance, in palliative care patients with cancer. Eleven hospice patients received four sessions of hypnotherapy and completed the Hospital Anxiety and Depression Scale, the Edmonton Symptom Assessment System, and the Verran and Snyder-Halpern Scale at set time points. Wrist actigraphy also provided an objective assessment of sleep quality. After the second hypnotherapy session there was a statistically significant reduction in mean anxiety and symptom severity, but not in depression or sleep disturbance. After the fourth session there was a statistically significant reduction in all four patient-reported measures but not in actigraphy. These results offer evidence that hypnotherapy can reduce anxiety in palliative care patients, as well as improving sleep and the severity of psychological and physical symptoms. Further studies are needed to explore whether the observed benefits were a direct result of the hypnotherapy and how the intervention could most benefit this patient population.
Madsen, Kirsten Halskov; Henriksen, Jette; Meldgaard, Anette
Chapter 11 by Kirsten Halskov Madsen, Anette Meldgaard and Jette Henriksen deals with the development of palliative care programmes aimed at the basic level of palliative care practice. The need to develop educational opportunities at particularly this level – described as ‘the basic inter......-professional level of palliative care’ – has been increasing for many years where palliative care has conventionally and primarily been associated with specialist training. As the authors show – based on a mapping out of existing educational initiatives in a region of Denmark, a reading of the curriculum...... and a description of the organization of palliative care – there is a need for such inter-professional palliative care that raises the level of competences at the basic level and the sharing of knowledge as well as securing the continuous qualifying of healthcare staff working with palliative care....
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Kestenbaum, Allison; Shields, Michele; James, Jennifer; Hocker, Will; Morgan, Stefana; Karve, Shweta; Rabow, Michael W; Dunn, Laura B
Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains' work in palliative care are scarce. The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model ("Spiritual AIM"), and to gather pilot data on Spiritual AIM's effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. Patients with advanced cancer (N = 31) who were receiving outpatient palliative care were assigned based on chaplains' and patients' outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale, Steinhauser Spirituality, Brief RCOPE, Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies-Depression (10 items), and Spielberger State Anxiety Inventory. From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping on the Brief RCOPE and an increase in Fatalism (a subscale of the Mini-MAC). Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs and religious and general coping in patients with serious illnesses. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...
Chou, Wen-Chi; Hung, Yu-Shin; Kao, Chen-Yi; Su, Po-Jung; Hsieh, Chia-Hsun; Chen, Jen-Shi; Liau, Chi-Ting; Lin, Yung-Chang; Liaw, Chuang-Chi; Wang, Hung-Ming
Awareness of the status of disease among terminally ill cancer patients is an important part of the end-of-life care. We have evaluated how palliative care consultative service (PCCS) affects patient disease awareness and determined who may benefit from such services in Taiwan. In total, 2,887 terminally ill cancer patients consecutively received PCCS between January 2006 and December 2010 at a single medical center in Taiwan, after which they were evaluated for disease awareness. At the beginning of PCCS, 31 % of patients (n = 895) were unaware of their disease status. The characteristics of these 895 patients were analyzed retrospectively to determine variables pertinent to patient disease awareness after PCCS. In total, 485 (50 %) of the 895 patients became aware of their disease at the end of PCCS. Factors significantly associated with higher disease awareness included a longer interval between the date of hospital admission and that of PCCS referral (>4 weeks versus ≤2 weeks), a longer duration of PCCS (>14 days versus ≤7 days), the male gender, divorced marital status (versus married), and family awareness (versus lack of family awareness). Lower disease awareness was associated with older age (age > 75 years versus age = 18-65 years), referral from non-oncology departments, and primary cancer localization (lung, colon-rectum, or urological versus liver). Disease awareness is affected by multiple factors related to the patients, their families, and the clinicians. The promotion of PCCS increased disease awareness among terminally ill cancer patients in Taiwan.
van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Dröes, Rose-Marie; Radbruch, Lukas; Vissers, Kris; Engels, Yvonne
Large numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators (QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries. A multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel's median votes were used to identify the final set of QIs. The Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions. International experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well.
Kawabata, Hideaki; Kakihara, Naoki; Nishitani, Yoko; Asano, Kota; Nose, Mariko; Takanashi, Asami; Kanda, Eiichiro; Nishimura, Masako; Tokunaga, Eiko; Matsurugi, Ayako; Fujimura, Keiko; Nishikawa, Masanori; Taga, Chiaki; Ikawa, Osamu; Yamaguchi, Makiko; Masuda, Katsuhiko
The palliative care team (PCT), nutrition support team (NST), and department of nutrition in our hospital developed a special soup service for patients with terminal cancer. We evaluated the usefulness of this soup service for improving the mood in patients with advanced digestive cancer with severe anorexia. We retrospectively reviewed the clinical data of 18 patients with advanced cancer originating in digestive organs who received soup service at our institution between 2015 and 2016. Members of the PCT, NST, and a licensed cook visited the bedside of each patient and served them a cup of soup twice a week. Fifteen patients (83%) were able to taste the soup with no adverse events, and 11 (73%) of them enjoyed the taste of the soup. In the five patients who died in our hospital during the service, the time between their last soup intake and death ranged from two to seven days (median three days). Even terminally ill patients suffering from advanced digestive cancer with severe anorexia were able to enjoy the taste of the soup served to them. The establishment of special meal service, such as this soup service, may not only relieve their stress but also support the strength of living and help improve their spiritual quality of life.
Matos, Ticiane Dionizio de Sousa; Meneguin, Silmara; Ferreira, Maria de Lourdes da Silva; Miot, Helio Amante
to compare the quality of life and religious-spiritual coping of palliative cancer care patients with a group of healthy participants; assess whether the perceived quality of life is associated with the religious-spiritual coping strategies; identify the clinical and sociodemographic variables related to quality of life and religious-spiritual coping. cross-sectional study involving 96 palliative outpatient care patient at a public hospital in the interior of the state of São Paulo and 96 healthy volunteers, using a sociodemographic questionnaire, the McGill Quality of Life Questionnaire and the Brief Religious-Spiritual Coping scale. 192 participants were interviewed who presented good quality of life and high use of Religious-Spiritual Coping. Greater use of negative Religious-Spiritual Coping was found in Group A, as well as lesser physical and psychological wellbeing and quality of life. An association was observed between quality of life scores and Religious-Spiritual Coping (pestrategias de coping religioso-espiritual; identificar las variables clínicas y sociodemográficas relacionadas a la calidad de vida y al coping religioso-espiritual. estudio transversal, desarrollado con 96 pacientes de ambulatorio de cuidados paliativos en un hospital público en el interior del Estado de São Paulo, Brasil, y 96 voluntarios sanos, mediante cuestionario utilizando datos sociodemográficos, el McGill Quality of Life Questionnaire y el Coping Religioso-Espiritual-Breve. fueron entrevistados 192 participantes que presentaron buena calidad de vida y alta utilización del Coping Religioso-Espiritual. Fue encontrado mayor uso de Coping Religioso-Espiritual negativo en el Grupo A, y también menor bienestar físico, psicológico y de calidad de vida. Fue observada asociación entre los scores de calidad de vida y Coping Religioso-Espiritual (pestrategia de enfrentamiento en pacientes bajo cuidados paliativos.
Iwase, Satoru; Kawaguchi, Takashi; Tokoro, Akihiro; Yamada, Kimito; Kanai, Yoshiaki; Matsuda, Yoshinobu; Kashiwaya, Yuko; Okuma, Kae; Inada, Shuji; Ariyoshi, Keisuke; Miyaji, Tempei; Azuma, Kanako; Ishiki, Hiroto; Unezaki, Sakae; Yamaguchi, Takuhiro
Cancer-related fatigue greatly influences quality of life in cancer patients; however, no specific treatments have been established for cancer-related fatigue, and at present, no medication has been approved in Japan. Systematic research using patient-reported outcome to examine symptoms, particularly fatigue, has not been conducted in palliative care settings in Japan. The objective was to evaluate fatigue, pain, and quality of life in cancer patients at the point of intervention by palliative care teams. Patients who were referred to palliative care teams at three institutions and met the inclusion criteria were invited to complete the Brief Fatigue Inventory, Brief Pain Inventory, and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative. Of 183 patients recruited, the majority (85.8%) were diagnosed with recurrence or metastasis. The largest group (42.6%) comprised lung cancer patients, of whom 67.2% had an Eastern Cooperative Oncology Group Performance Status of 0-1. The mean value for global health status/quality of life was 41.4, and the highest mean European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative symptom item score was for pain (51.0). The mean global fatigue score was 4.1, and 9.8%, 30.6%, 38.7%, and 20.8% of patients' fatigue severity was classified as none (score 0), mild (1-3), moderate (4-6), and severe (7-10), respectively. Cancer-related fatigue, considered to occur more frequently in cancer patients, was successfully assessed using patient-reported outcomes with the Brief Fatigue Inventory for the first time in Japan. Results suggested that fatigue is potentially as problematic as pain, which is the main reason for palliative care.
Kurita, Geana Paula; Benthien, Kirstine Skov; Sjøgren, Per; Kaasa, Stein; Hjermstad, Marianne Jensen
Studies with neuropsychological assessments in patients with cancer are sparse, and the evidence is very limited regarding their status of cognitive function over time. This study aimed at assessing the prevalence and predictors of cognitive impairment in patients with cancer in palliative care. Prospective longitudinal investigation derived from the European Palliative Care Cancer Symptom study (2011-2013) including patients with cancer in palliative care, ≥18 years, and with at least one assessment post-inclusion. For cognitive assessment, a 4-item version of the Mini Mental State Examination was applied at inclusion and after 4 to 16 weeks. Logistic regression model with multiple imputations was applied. The sample consisted of 1568 patients (50% male, mean age 65.5, 42% with 10-12 years schooling, mean Karnofsky Performance Status-KPS 68%). Longitudinal analysis of the patients with complete MMSE at both assessments (n = 801) showed that 64.5% were not impaired, 12.5% remained cognitively impaired, 11.4% developed impairment, and 11.6% improved. Those who improved cognitively also reported reduced pain intensity and increased appetite. The predictive model (n = 1351) showed that those with low KPS (OR = 1.6, 95% CI 1.0-2.5) most often developed cognitive impairment, while patients with breast cancer (OR = 0.4, 95% CI 0.2-0.7) had lower odds for impairment. During palliative care, a substantial number of patients remained cognitively impaired or developed cognitive impairment; however, it is noteworthy that improvement was also observed. Physical performance and cancer type may predict cognitive impairment.
van der Plas, Annicka G M; Vissers, Kris C; Francke, Anneke L; Donker, Gé A; Jansen, Wim J J; Deliens, Luc; Onwuteaka-Philipsen, Bregje D
Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse. To compare cancer patients with and without additional support from a case manager on: 1) the patients' general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes. This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013. The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care. Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is 'only' advisory and he or she does not provide hands-on care or prescribe medication.
Swart, S.J.; Rietjens, J.A.C.; van Zuylen, L.; Zuurmond, W.W.A.; Perez, R.S.G.M.; van der Maas, P.J.; van Delden, J.J.M.; van der Heide, A.
Context: Palliative care is often focused on cancer patients. Palliative sedation at the end of life is an intervention to address severe suffering in the last stage of life. Objectives: To study the practice of continuous palliative sedation for both cancer and noncancer patients. Methods: In 2008,
Burge, Frederick I.; Lawson, Beverley J.; Johnston, Grace M.; Grunfeld, Eva
Background Inequalities in access to palliative care programs (PCP) by age have been shown to exist in Canada and elsewhere. Few studies have been able to provide greater insight by simultaneously adjusting for multiple demographic, health service, and socio-cultural indicators. Objective To re-examine the relationship between age and registration to specialized community-based PCP programs among cancer patients and identify the multiple indicators contributing to these inequalities. Methods This retrospective, population-based study was a secondary data analysis of linked individual level information extracted from 6 administrative health databases and contextual (neighborhood level) data from provincial and census information. Subjects included all adults who died due to cancer between 1998 and 2003 living within 2 District Health Authorities in the province of Nova Scotia, Canada. The relationship between registration in a PCP and age was examined using hierarchical nonlinear regression modeling techniques. Identification of potential patient and ecologic contributing indicators was guided by Andersen’s conceptual model of health service utilization. Results Overall, 66% of 7511 subjects were registered with a PCP. Older subjects were significantly less likely than those center had a major impact on registration. Conclusions Age continues to be a significant predictor of PCP registration in Nova Scotia even after controlling for the confounding effects of many new demographic, health service, and ecologic indicators. PMID:19300309
Background: Sleep disorders are frequent in patients with advanced cancer receiving palliative-care, especially in elderly patients (1). Sleep disorders during palliative-care may be related with anxiety, opioids related central-sleep apnoea or corticoids therapy between others (2). Our aim was to quantify the effectiveness of hypnotic medication in the sleep quality in advanced cancer receiving palliative-care elderly patients. Material and methods: A descriptive cross-sectional study was...
Cloyes, Kristin G; Hull, William; Davis, Andra
To identify the unique needs of lesbian, gay, bisexual, and transgender (LGBT) cancer patients and caregivers, and review recommendations supporting more effective and inclusive palliative and end-of-life care. Published research and clinical guidelines. Transitions in care raise particular challenges for LGBT patients, including provider communication, perceptions of safety and acceptance, and assessing and respecting patients' definitions of family and spirituality. LGBT patients and their caregivers need competent nurses to support them, especially during transitions. Implementing LGBT-inclusive education, training, and practice will improve outcomes for LGBT cancer patients and their caregivers - and potentially all patients. Copyright © 2017 Elsevier Inc. All rights reserved.
Noble, S. I. R.; Nelson, A.; Finlay, I. G.
Background: It is possible that patients with advanced cancer, who are from the medical profession, have different or additional care needs than other patients. Previous training, professional experiences and access to information and services may influence their needs and subsequent illness
Larkin, Philip J; Dierckx de Casterlé, Bernadette; Schotsmans, Paul
Transition as a concept in healthcare has been explored, but there is limited empirical work which considers transition in the context of palliative care, specifically from the patient perspective. This article reports findings from a qualitative study designed to explore transition experiences of 100 advanced cancer patients in six European countries. Data were analyzed using the ATLAS.ti program. Findings suggest that transition is a confusing time of mixed messages, poor communication, and uncertainty, but the physical environment of the hospice offers a place of ontological security from which to address this. Transition concepts fail to capture the palliative care experience fully. Transience, as an alternative concept, is reported, although further research is needed to explore this. In clinical practice, the value given to hospice by patients suggests that clinicians must carefully balance the benefit of mainstream integration with sensitive assimilation of hospice philosophy.
Full Text Available "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
Mercadante, Sebastiano; Masedu, Francesco; Balzani, Isabella; De Giovanni, Daniela; Montanari, Luigi; Pittureri, Cristina; Bertè, Raffaella; Russo, Domenico; Ursini, Laura; Marinangeli, Franco; Aielli, Federica
The aim of this study was to assess the prevalence of delirium in advanced cancer patients admitted to different palliative care services in Italy and possible related factors. The secondary outcome was to assess the changes of delirium after 1 week of palliative care. A consecutive sample of patients was screened for delirium in period of 1 year in seven palliative care services. General data, including primary tumor, age, gender, concomitant disease, palliative prognostic score (PaP), and Karnofsky status, were collected. Possible causes or factors associated with delirium were looked for. The Edmonton Symptom Assessment Scale was used to assess physical and psychological symptoms and the Memorial Delirium Assessment Scale (MDAS) to assess the cognitive status of patients, at admission (T0) and 1 week after palliative care (T7). Of 848 patients screened, 263 patients were evaluated. Sixty-six patients had only the initial evaluation. The mean Karnofsky status was 34.1 (SD = 6.69); the mean PaP score at admission was 6.9 (SD = 3.97). The mean duration of palliative care assistance, equivalent to survival, was 38.4 days (SD = 48, range 2-220). The mean MDAS values at admission and after 1 week of palliative care were 6.9 (SD = 6.71) and 8.8 (SD = 8.26), respectively. One hundred ten patients (41.8%) and 167 patients (67.3%) had MDAS values ≥ 7 at admission and after 1 week of palliative care, respectively. Age, dehydration, cachexia, chemotherapy in the last three months, and intensity of drowsiness and dyspnea were independently associated with a MDAS > 7. A worsening of drowsiness, the use of opioids, and the use of corticosteroids were independently associated with changes of MDAS from T0 to T7. Although the prevalence of delirium seems to be similar to that reported in other acute settings, delirium tended to worsen or poorly responded to a palliative care treatment. Some clinical factors were independently associated with delirium. This
Kao, Yee-Hsin; Liu, Yao-Ting; Koo, Malcolm; Chiang, Jui-Kun
For patients receiving palliative home care, the need to visit the emergency department is considered to be an indicator of poor quality care. The situation can be particularly distressing when it occurs outside of normal hours of palliative home care service. The aim of this study was to investigate the factors for emergency department use during out-of-hours periods of palliative home care service among advanced cancer patients in Taiwan. This case-control study was based on a retrospective medical chart review (January 2010 to December 2012) of advanced cancer patients who were receiving palliative home care in a community hospital in south Taiwan. The use of emergency medical services by these patients was dichotomized into either normal hours (8 a.m. to midnight, Monday to Friday, excluding public holidays) of palliative home care or outside normal hours. Logistic regression analyses were performed to evaluate factors associated with emergency services use during out-of-hours period of palliative home care. Of the 94 patients receiving palliative home care, 65 had used emergency services at least once during the 3-year study period. Of these 65 patients, 40% used emergency services during out-of-hours of palliative home care. Patients with distressing conditions (defined as the occurrence of any two conditions of dyspnea, change of consciousness, or gastrointestinal bleeding) were significantly more likely to use emergency services during out-of-hours of palliative home care. Patients at risk of developing dyspnea, change of consciousness, or gastrointestinal bleeding should be provided with relevant information regarding these symptoms and signs.
Jayita Kedar Deodhar
Full Text Available Context: Training programs for volunteers prior to their working in palliative care are well-established in India. However, few studies report on continuing professional development programs for this group. Aims: To conduct a preliminary assessment of educational needs of volunteers working in palliative care for developing a structured formal continuing professional development program for this group. Settings and Design: Cross-sectional observational study conducted in the Department of Palliative Medicine of a tertiary care cancer institute in India. Materials and Methods: Participant volunteers completed a questionnaire, noting previous training, years of experience, and a comprehensive list of topics for inclusion in this program, rated in order of importance according to them. Statistical Analysis Used: Descriptive statistics for overall data and Chi-square tests for categorical variables for group comparisons were applied using Statistical Package for Social Sciences version 18. Results: Fourteen out of 17 volunteers completed the questionnaire, seven having 5-10-years experience in working in palliative care. A need for continuing professional development program was felt by all participants. Communication skills, more for children and elderly specific issues were given highest priority. Spiritual-existential aspects and self-care were rated lower in importance than psychological, physical, and social aspects in palliative care. More experienced volunteers (>5 years of experience felt the need for self-care as a topic in the program than those with less (<5-years experience ( P < 0.05. Conclusions: Understanding palliative care volunteers′ educational needs is essential for developing a structured formal continuing professional development program and should include self-care as a significant component.
Johnsen, Anna Thit; Petersen, Morten Aagaard; Gluud, Christian
BACKGROUND: Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialized palliative care (SPC) could offer improvements. The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer will benefit...
Kordovan, Sarah; Preissler, Pia; Kamphausen, Anne; Bokemeyer, Carsten; Oechsle, Karin
This study was a prospective evaluation of feasibility, acceptance, and potential beneficial effects of music therapy in terminally ill cancer patients on a specialized palliative care inpatient ward. Intervention had to consist of at least two sessions, but frequency and duration was left to the patients` decision. Different music therapy methods were offered to the patient at the beginning of every session. Patients rated their subjective benefit. Disease-related and sociodemographic factors were considered as potentially influencing factors. A total of 166 music therapy sessions were performed with 41 patients (average, 4; range, 2-10). Average session duration was 41 minutes (range, 20-70). Most favored methods were therapeutic conversation in 84% of sessions; listening to relaxing music, 39%; playing an instrument, 31%; and music-lead imagination, 11%. Receptive music therapy was applied in 45%, active forms in 25%, a combination of both in 7%, and therapeutic conversation only in 23%. Music therapy was rated to be "helpful" in 68%. Positive effects were significantly associated with frequency (p = 0.009) and duration (p = 0.040), living in a partnership (p = 0.017), having children (p = 0.035), psycho-oncologic therapy (p = 0.043), experience with music therapy (p = 0.007), role of music in life (p = 0.035), playing an instrument (p = 0.021), and singing regularly (p = 0.003). Music therapy techniques, especially receptive methods, are feasible and well accepted in terminally ill cancer patients. Therapeutic conversation seems to play an important role. Frequency and duration of music therapy, previous experience with music and music therapy, as well as sociodemographic factors influence positive effects of music therapy.
Ramirez, Rafael; Planas, Josep; Escude, Nuria; Mercade, Jordi; Farriols, Cristina
Music is known to have the power to induce strong emotions. The present study assessed, based on Electroencephalography (EEG) data, the emotional response of terminally ill cancer patients to a music therapy intervention in a randomized controlled trial. A sample of 40 participants from the palliative care unit in the Hospital del Mar in Barcelona was randomly assigned to two groups of 20. The first group [experimental group (EG)] participated in a session of music therapy (MT), and the second group [control group (CG)] was provided with company. Based on our previous work on EEG-based emotion detection, instantaneous emotional indicators in the form of a coordinate in the arousal-valence plane were extracted from the participants’ EEG data. The emotional indicators were analyzed in order to quantify (1) the overall emotional effect of MT on the patients compared to controls, and (2) the relative effect of the different MT techniques applied during each session. During each MT session, five conditions were considered: I (initial patient’s state before MT starts), C1 (passive listening), C2 (active listening), R (relaxation), and F (final patient’s state). EEG data analysis showed a significant increase in valence (p = 0.0004) and arousal (p = 0.003) between I and F in the EG. No significant changes were found in the CG. This results can be interpreted as a positive emotional effect of MT in advanced cancer patients. In addition, according to pre- and post-intervention questionnaire responses, participants in the EG also showed a significant decrease in tiredness, anxiety and breathing difficulties, as well as an increase in levels of well-being. No equivalent changes were observed in the CG. PMID:29551984
Full Text Available Music is known to have the power to induce strong emotions. The present study assessed, based on Electroencephalography (EEG data, the emotional response of terminally ill cancer patients to a music therapy intervention in a randomized controlled trial. A sample of 40 participants from the palliative care unit in the Hospital del Mar in Barcelona was randomly assigned to two groups of 20. The first group [experimental group (EG] participated in a session of music therapy (MT, and the second group [control group (CG] was provided with company. Based on our previous work on EEG-based emotion detection, instantaneous emotional indicators in the form of a coordinate in the arousal-valence plane were extracted from the participants’ EEG data. The emotional indicators were analyzed in order to quantify (1 the overall emotional effect of MT on the patients compared to controls, and (2 the relative effect of the different MT techniques applied during each session. During each MT session, five conditions were considered: I (initial patient’s state before MT starts, C1 (passive listening, C2 (active listening, R (relaxation, and F (final patient’s state. EEG data analysis showed a significant increase in valence (p = 0.0004 and arousal (p = 0.003 between I and F in the EG. No significant changes were found in the CG. This results can be interpreted as a positive emotional effect of MT in advanced cancer patients. In addition, according to pre- and post-intervention questionnaire responses, participants in the EG also showed a significant decrease in tiredness, anxiety and breathing difficulties, as well as an increase in levels of well-being. No equivalent changes were observed in the CG.
Mukesh Kumar Singhal
Conclusions: Palliative care services are an indispensable part of a tertiary regional cancer care center. The oncologists should be made aware of the requirement of better relief of pain and other distressing symptoms to provide better quality of life to the patients suffering from advanced cancer.
Hay, Casey M; Lefkowits, Carolyn; Crowley-Matoka, Megan; Bakitas, Marie A; Clark, Leslie H; Duska, Linda R; Urban, Renata R; Creasy, Stephanie L; Schenker, Yael
Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.
FEATURES OF PALLIATIVE CARE. IN AIDS ... rent infection e.g. IV ampho- tericin B on an in-patient ... nurses for case management, to communicate ... evaluation — an ongoing process of assessment, to .... Rectal, subcutaneous, intravenous.
Davis, Mellar P; Lagman, Ruth; Parala, Armida; Patel, Chirag; Sanford, Tanya; Fielding, Flannery; Brumbaugh, Anita; Gross, James; Rao, Archana; Majeed, Sumreen; Shinde, Shivani; Rybicki, Lisa A
Hope is important to patients with cancer. Identifying factors that influence hope is important. Anxiety, depression, fatigue, and pain are reported to impair hope. The objective of this study was to determine whether age, gender, marital status, duration of cancer, symptoms, or symptom burden measured by the sum of severity scores on the Edmonton Symptom Assessment Scale (ESAS) correlated with hope measured by the Herth Hope Index (HHI). Patients with advanced cancer in a palliative care unit participated. Demographics including age, gender, marital status, cancer site, and duration of cancer were collected. Individuals completed the ESAS and HHI. Spearman correlation and linear regression were used to assess associations adjusting for gender (male vs female), age ( 12 months). One hundred and ninety-seven were participated in the study, of which 55% were female with a mean age of 61 years (standard deviation 11). Hope was not associated with gender, age, marital status, or duration of cancer. In univariable analysis, hope inversely correlated with ESAS score (-0.28), lack of appetite (-0.22), shortness of breath (-0.17), depression (-0.39), anxiety (-0.32), and lack of well-being (-0.33); only depression was clinically relevant. In multivariable analysis, total symptom burden weakly correlated with hope; only depression remained clinically significant. This study found correlation between symptom burden and hope was not clinically relevant but was so for depression. Among 9 ESAS symptoms, only depression had a clinically relevant correlation with hope.
Neergaard, Mette Asbjørn; Olesen, Frede; Jensen, Anders Bonde
care setting to explore barriers and facilitators for delivery of good palliative home care. Methods: Three focus group interviews with fourteen bereaved relatives in Aarhus County, Denmark. Results: Three main categories of experience were identified: 1) The health professionals' management, where...
Kittelson, Sheri; Pierce, Read; Youngwerth, Jeanie
In response to poor healthcare quality outcomes and rising costs, healthcare reform triple aim has increased requirements for providers to demonstrate value to payers, partners, and the public. Electronically automating measurement of the meaningful impact of palliative care (PC) programs on clinical, operational, and financial systems over time is imperative to the success of the field and the goal of development of this automated PC scorecard. The scorecard was organized into a format of quality measures identified by the Measuring What Matters (MWM) project that are defined as important to the team, automatically extracted from the electronic health record, valid, and can be impacted over time. The scorecard was initially created using University of Florida Health (UF) data, a new PC program, and successfully applied and implemented at University of Colorado Anschutz Medical Campus (CU), a second institution with a mature PC program. Clinical metrics are organized in the scorecard based on MWM and described in terms of the metric definition, rationale for selection, measure type (structure, process, or outcome), and whether this represents a direct or proxy measure. The process of constructing the scorecard helped identify areas within both systems for potential improvement in team structure, clinical processes, and outcomes. In addition, by automating data extraction, the scorecard decreases costs associated with manual data entry and extraction, freeing clinical staff to care for patients and increasing the value of PC delivered to patients.
In Kenya, cancers as a disease group rank third as a cause of death after infectious and cardiovascular diseases. It is estimated that the annual incidence of cancer is about 37,000 new cases with an annual mortality of 28,000 cases (Kenya National Cancer Control Strategy 2010). The incidence of non-communicable diseases accounts for more than 50% of total hospital admissions and over 55% of hospital deaths (Kenya National Strategy for the Prevention and Control of Non Communicable Diseases 2015-2020). The prevalence of HIV is 6.8 (KIAS 2014). Most of these patients will benefit from palliative care services, hence the need to integrate palliative care services in the public healthcare system. The process of integrating palliative care in public hospitals involved advocacy both at the national level and at the institutional level, training of healthcare professionals, and setting up services within the hospitals that we worked with. Technical support was provided to each individual institution as needed. Eleven provincial hospitals across the country have now integrated palliative care services (Palliative Care Units) and are now centres of excellence. Over 220 healthcare providers have been trained, and approximately, over 30,000 patients have benefited from these services. Oral morphine is now available in the hospital palliative care units. As a success of the pilot project, Kenya Hospices and Palliative Care Association (KEHPCA) is now working with the Ministry of Health Kenya to integrate palliative care services in 30 other county hospitals across the country, thus ensuring more availability and access to more patients. Other developing countries can learn from Kenya's successful experience.
Jul 2, 2011 ... pain evoked by light touch or pain evoked by change in temperature. This type of pain is .... the drugs; drug interactions; co-morbidities that can be alleviated by .... AIDS and cancer. • Because pain in palliative care is multi-.
Knight, Carl; Albertsen, Andreas
Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcar...... to provide pain relief to those who need it as a supplement to treatment and, without justice-based reasons to provide palliative care to those whose opportunities cannot be restored. We conclude that this makes Daniels' framework much less attractive.......Palliative care serves both as an integrated part of treatment and as a last effort to care for those we cannot cure. The extent to which palliative care should be provided and our reasons for doing so have been curiously overlooked in the debate about distributive justice in health and healthcare....... We argue that one prominent approach, the Rawlsian approach developed by Norman Daniels, is unable to provide such reasons and such care. This is because of a central feature in Daniels' account, namely that care should be provided to restore people's opportunities. Daniels' view is both unable...
Howell, Doris M.; Abernathy, Tom; Cockerill, Rhonda; Brazil, Kevin; Wagner, Frank; Librach, Larry
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; phome 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. PMID:22294993
Groenvold, Mogens; Petersen, Morten Aa; Aaronson, Neil K.; Arraras, Juan I.; Blazeby, Jane M.; Bottomley, Andrew; Fayers, Peter M.; de Graeff, Alexander; Hammerlid, Eva; Kaasa, Stein; Sprangers, Mirjam A. G.; Bjorner, Jakob B.
This study aimed at developing a shortened version of the EORTC QLQ-C30, one of the most widely used health-related quality of life questionnaires in oncology, for palliative care research. The study included interviews with 41 patients and 66 health care professionals in palliative care to
Stiel, Stephanie; Heckel, Maria; Seifert, Andreas; Frauendorf, Tobias; Hanke, Roland Martin; Ostgathe, Christoph
Palliative care (PC) is no longer offered with preference to cancer patients (CA), but also to patients with non-malignant, progressive diseases. Taking current death statistics into account, PC in Europe will face a growing number of patients dying from non-cancer diseases (NCA). More insights into specialized palliative home care (SPHC) in NCAs are needed. Retrospective analysis and group comparisons between CAs and NCAs of anonymous data of all patients cared for between December 2009 and June 2012 by one SPHC team in Germany. Patient-, disease- and care-related data are documented in clinical routine by specialized PC physicians and nurses in the Information System Palliative Care 3.0 ® (ISPC®). Overall, 502 patients were cared for by the SPHC team; from 387 patients comprehensive data sets were documented. These 387 data sets (CA: N = 300, 77.5 % and NCA: N = 87, 22.5 %) are used for further analysis here. NCAs were significantly older (81 vs. 73 years; p home care (12 vs. 5 %; p home care (6 vs. 20 %; p homes (50 vs. 20 %; p services seems to takes place late in the disease trajectory, as demonstrated by the lower survival rate for NCAs. Nevertheless, the results show, that NCAs PC needs are as complex and intense as in CAs.
Lund Rasmussen, Charlotte; Klee Olsen, Marc; Thit Johnsen, Anna
BACKGROUND: Patients with advanced cancer often experience fatigue and other symptoms that negatively impact their quality of life. The current trial investigated the effect of melatonin on fatigue and other symptoms in patients with advanced cancer. METHODS: Patients who were aged ≥18 years, had...... the placebo and melatonin periods were found for physical fatigue, secondary outcomes, or explorative outcomes. CONCLUSIONS: In the current study, oral melatonin at a dose of 20 mg was not found to improve fatigue or other symptoms in patients with advanced cancer....... a histologically confirmed stage IV cancer (TNM Classification), and who reported feeling significantly tired were recruited from the palliative care unit at the study institution. The study was a double-blind, randomized, placebo-controlled crossover trial. Patients received 1 week of melatonin at a dose of 20 mg...
Neergaard, Mette Asbjørn; Olesen, Frede; Jensen, Anders Bonde
Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care.......Little is known about the existing barriers to cooperation among health professionals in basic level palliative care for terminally ill patients with cancer in primary health care....
Maltoni, Marco; Setola, Elisabetta
Palliative sedation involves the use of sedative medication to relieve refractory symptoms in patients by reducing their level of consciousness. Although it is considered an acceptable clinical practice from most ethical points of view, palliative sedation is still a widely debated procedure and merits better understanding. The relevant medical literature pertaining to palliative sedation was analyzed and reviewed from various technical, relational, and bioethical perspectives. Proportionate palliative sedation is considered to be the most clinically appropriate modality for performing palliative sedation. However, guidelines must be followed to ensure that it is performed correctly. Benzodiazepines represent the first therapeutic option and careful monitoring of dosages is essential to avoid oversedation or undersedation. Proportionate palliative sedation is used to manage and relieve refractory symptoms in patients with cancer during their last days or hours of life. Evidence suggests that its use has no detrimental effect on survival. A different decision-making process is used to manage the withdrawal of hydration than the process used to determine whether proportionate palliative sedation is appropriate. Communication between patients, their relatives, and the health care staff is important during this medical intervention.
Vivat, B.; Young, T.; Winstanley, J.; Arraras, J. I.; Bennett, M. I.; Brédart, A.; Costantini, A.; Fisher, S. E.; Greimel, E.; Guo, J.; Irarrazaval, M. E.; Kobayashi, K.; Kruizinga, R.; Navarro, M.; Omidvari, S.; Rohde, G. E.; Serpentini, S.; van Laarhoven, H. W. M.; Yang, G.
Spiritual care and spiritual wellbeing (SWB) are central to palliative care, but no measures of SWB have yet been developed cross-culturally. In 2002 the EORTC Quality of Life (QL) Group began international development of an SWB measure for palliative patients. Three domains of SWB were initially
Kato, Koki; Fukuda, Haruhisa
To quantify the difference between adjusted costs for home-based palliative care and hospital-based palliative care in terminally ill cancer patients. We carried out a case-control study of home-care patients (cases) who had died at home between January 2009 and December 2013, and hospital-care patients (controls) who had died at a hospital between April 2008 and December 2013. Data on patient characteristics were obtained from insurance claims data and medical records. We identified the determinants of home care using a multivariate logistic regression analysis. Cox proportional hazards analysis was used to examine treatment duration in both types of care, and a generalized linear model was used to estimate the reduction in treatment costs associated with home care. The case and control groups comprised 48 and 99 patients, respectively. Home care was associated with one or more person(s) living with the patient (adjusted OR 6.54, 95% CI 1.18-36.05), required assistance for activities of daily living (adjusted OR 3.61, 95% CI 1.12-10.51), non-use of oxygen inhalation therapy (adjusted OR 12.75, 95% CI 3.53-46.02), oral or suppository opioid use (adjusted OR 5.74, 95% CI 1.11-29.54) and transdermal patch opioid use (adjusted OR 8.30, 95% CI 1.97-34.93). The adjusted hazard ratio of home care for treatment duration was not significant (adjusted OR 0.95, 95% CI 0.59-1.53). However, home care was significantly associated with a reduction of $7523 (95% CI $7093-7991, P = 0.015) in treatment costs. Despite similar treatment durations between the groups, treatment costs were substantially lower in the home-care group. These findings might inform the policymaking process for improving the home-care support system. Geriatr Gerontol Int 2017; 17: 2247-2254. © 2017 Japan Geriatrics Society.
Thorn, Hrønn; Uhrenfeldt, Lisbeth
electronic databases and seven websites were searched. Methodological quality: Methodological validity of the qualitative papers was assessed independently by two reviewers using the standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI...... knowledge and personal growth. Objective/question: What are non-specialist nurses’ experiences when providing palliative end-of-life cancer care that involves the psychosocial and existential transitions of their patients and significant others? Inclusion criteria Types of participants: The current review...... considered studies that included a description of the experiences of non-specialist trained registered nurses (RNs) working in non-specialist wards. Phenomena of interest: The current review considered studies that investigated experiences of RNs when providing palliative end-of-life cancer care...
Crul, B J; van Weel, C
Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.
Kelly, Maria; O'Brien, Katie M; Lucey, Michael; Clough-Gorr, Kerri; Hannigan, Ailish
Analysing linked, routinely collected data may be useful to identify characteristics of patients with suspected lung cancer who could benefit from early assessment for palliative care. The aim of this study was to compare characteristics of newly diagnosed lung cancer patients dying within 30 days of diagnosis (short term survivors) with those surviving more than 30 days. To identify indicators for early palliative care assessment we distinguished between characteristics available at diagnosis (age, gender, smoking status, marital status, comorbid disease, admission type, tumour stage and histology) from those available post diagnosis. A second aim was to examine the association between receiving any tumour-directed treatment, place of death and survival time. A retrospective observational population based study comparing lung cancer patients who died within 30 days of diagnosis (short term survivors) with those who survived longer using Chi-squared tests and logistic regression. Incident lung cancer (ICD-03:C34) patients diagnosed 2005-2012 inclusive who died before 01-01-2014 (n = 14,228) were identified from the National Cancer Registry of Ireland linked to death certificate data and acute hospital episode data. One in five newly diagnosed lung cancer patients died within 30 days of diagnosis. After adjusting for stage and histology, death within 30 days was higher in patients who were aged 80 years or older (adjusted OR 2.46; 95%CI 2.05-3.96; p < 0.001), patients with emergency admissions at diagnosis (adjusted OR 2.96; 95%CI 2.61-3.37; p < 0.001) and patients with any comorbidities at diagnosis (adjusted OR 1.32 95%CI 1.15-1.52; p < 0.001). Overall, 75% of those who died within 30 days died in hospital compared to 43% of longer term survivors. We have shown a high proportion of lung cancer patients who die within 30 days of diagnosis are older, have comorbidities and are admitted through the emergency department. These characteristics
Smith, Alexander K; Thai, Julie N; Bakitas, Marie A; Meier, Diane E; Spragens, Lynn H; Temel, Jennifer S; Weissman, David E; Rabow, Michael W
Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Our objective was to obtain in-depth information about palliative care clinics. We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked "pain management" and "determining goals of care" as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices
Roe, Justin W G; Leslie, Paula; Drinnan, Michael J
Difficulty swallowing is a well-documented symptom in head and neck cancer and oesophageal malignancy. The frequency of oropharyngeal swallowing difficulties in the palliative phase of other malignancies is less reported. 1) To describe the patient experience of swallowing and associated difficulties while receiving specialist palliative care for malignancies other than those affecting the head and neck and 2) to identify the quality of life issues for the participants with dysphagia and compare with normative and dysphagic data provided by SWAL-QOL. Four month prospective pilot study - questionnaire design. Acute teaching hospital. Eleven patients receiving specialist palliative care. Participants were interviewed using a modified version of the SWAL-QOL, a validated quality of life assessment tool for use specifically with people with oropharyngeal dysphagia. Eight quality of life domains were explored as well as fourteen dysphagic symptoms. Seven of the 11 participants had dysphagic symptoms detailed in the SWAL-QOL and a further two patients reported transient dysphagic symptoms since diagnosis of their disease. Nine participants reported an impact on their quality of life and three reported a considerable impact in four or more domains. Eight of the 11 participants had self-selected softer textured foods. A notable group were three patients with lung cancer and one with lung metastases with a history of vocal fold motion impairment, all of who had experienced dysphagic symptoms since diagnosis. Patients with cancers not affecting the head and neck are at risk of developing symptoms of oropharyngeal dysphagia and subsequently, compromized nutrition, hydration and quality of life. Areas for further research are suggested.
Full Text Available Ethical dilemmas that face heathcare team members referring patients to hospice programs include the ability of clinicians to predict accurately a patient bad prognosis. They affect day-to-day patient management in palliative care programs including healthcare team members concern over the use of morphine because possible respiratory depression in the patient, the question of providing enteral or parenteral nutritional support to patients who refuse to eat and the question of providing parenteral fluids to patients who are unable to take fluids during the terminal phrases of illness. A final ethical dilemma concerns the methodology for quality of life research in palliative care. Understanding and resolving these ethical dilemmas is an important factor determining the quality of the caring for the patient. The ethical dilemmas that are discussed in the article likely to occur in this period can be prevented through his/her participation in the decisions concerning his or her treatment. [Archives Medical Review Journal 2013; 22(1.000: 65-79
care. The confident and safe use of opioids in palliative care is an essential skill required by all. d o c t o r s . ... patient for ongoing clinical review. Start the elderly and frail .... (24 hour subcutaneous infusion ... (nursing or medical), pain special-.
[Value of the palliative prognostic index, controlling nutritional status, and prognostic nutritional index for objective evaluation during transition from chemotherapy to palliative care in cases of advanced or recurrent gastrointestinal cancer].
Fukushima, Tsuyoshi; Annen, Kazuya; Kawamukai, Yuji; Onuma, Noritomo; Kawashima, Mayu
We investigated whether objective evaluation by using the palliative prognostic index(PPI), controlling nutritional status(COUNT), and prognostic nutritional index(PNI)can provide prognostic information during the transition from chemotherapy to palliative care in patients with advanced or recurrent gastrointestinal cancer. The subjects were 28 patients with gastrointestinal cancer who died of their disease between January 2009 and June 2012. We compared the PPI, COUNT, and PNI scores between patients who died within 90 days of completing chemotherapy(Group A, n=14)and patients who survived for 90 or more days(Group B, n=14). The PPI score for Group A(4.0)was significantly higher than that for Group B(0.8)(pevaluation during the transition from chemotherapy to palliative care.
Cleary, James; Ddungu, Henry; Distelhorst, Sandra R; Ripamonti, Carla; Rodin, Gary M; Bushnaq, Mohammad A; Clegg-Lamptey, Joe N; Connor, Stephen R; Diwani, Msemo B; Eniu, Alexandru; Harford, Joe B; Kumar, Suresh; Rajagopal, M R; Thompson, Beti; Gralow, Julie R; Anderson, Benjamin O
Many women diagnosed with breast cancer in low- and middle-income countries (LMICs) present with advanced-stage disease. While cure is not a realistic outcome, site-specific interventions, supportive care, and palliative care can achieve meaningful outcomes and improve quality of life. As part of the 5th Breast Health Global Initiative (BHGI) Global Summit, an expert international panel identified thirteen key resource recommendations for supportive and palliative care for metastatic breast cancer. The recommendations are presented in three resource-stratified tables: health system resource allocations, resource allocations for organ-based metastatic breast cancer, and resource allocations for palliative care. These tables illustrate how health systems can provide supportive and palliative care services for patients at a basic level of available resources, and incrementally add services as more resources become available. The health systems table includes health professional education, patient and family education, palliative care models, and diagnostic testing. The metastatic disease management table provides recommendations for supportive care for bone, brain, liver, lung, and skin metastases as well as bowel obstruction. The third table includes the palliative care recommendations: pain management, and psychosocial and spiritual aspects of care. The panel considered pain management a priority at a basic level of resource allocation and emphasized the need for morphine to be easily available in LMICs. Regular pain assessments and the proper use of pharmacologic and non-pharmacologic interventions are recommended. Basic-level resources for psychosocial and spiritual aspects of care include health professional and patient and family education, as well as patient support, including community-based peer support. Copyright © 2013 The Authors. Published by Elsevier Ltd.. All rights reserved.
Full Text Available ... and Legacy through Pediatric Palliative Care - Duration: 5:39. Northeast Ohio Medical University (NEOMED) 26,045 views 5:39 Little Stars – Paediatric Palliative Care – Charlie's Story - Duration: ...
Full Text Available ... The Keeney Family discuss pediatric palliative care - Duration: 12:07. Hospice of the Western Reserve 12,073 views 12:07 Perinatal Palliative Care - The Zimmer Family Story - ...
Full Text Available ... it free Find out why Close Pediatric Palliative Care: A Personal Story NINRnews Loading... Unsubscribe from NINRnews? ... and her family. The story demonstrates how palliative care can positively influence a patient's and family's experience ...
Conclusions: Prevalence of hyponatremia is significant in palliative care patients. A prospective study looking at the causes and clinical outcomes associated with hyponatremia in palliative care patients is needed.
Ingersoll, Luke T; Saeed, Fahad; Ladwig, Susan; Norton, Sally A; Anderson, Wendy; Alexander, Stewart C; Gramling, Robert
Maximizing value in palliative care requires continued development and standardization of communication quality indicators. To describe the basic epidemiology of a newly-adopted patient-centered communication quality indicator for hospitalized palliative care patie9nts with advanced cancer. Cross-sectional analysis of 207 advanced cancer patients who received palliative care consultation at two medical centers in the United States. Participants completed the Heard & Understood quality indicator immediately before and the day following the initial palliative care consultation: "Over the past two days ["24 hours" for the post-consultation version], how much have you felt heard and understood by the doctors, nurses and hospital staff? Completely/Quite a Bit/Moderately/Slightly/Not at All". We categorized "Completely" as indicating ideal quality. Approximately one-third indicated ideal Heard & Understood quality before palliative care consultation. Age, financial security, emotional distress, preferences for comfort-longevity tradeoffs at end-of-life, and prognosis expectations were associated with pre-consultation quality. Among those with less-than-ideal quality at baseline, 56% rated feeling more Heard & Understood the day following palliative care consultation. The greatest pre-post improvement was among people who had unformed end-of-life treatment preferences or who reported having "no idea" about their prognosis at baseline. Most patients felt incompletely heard and understood at the time of referral to palliative care consultation and more than half improved following consultation. Feeling heard and understood is an important quality indicator sensitive to interventions to improve care and key variations in the patient experience. Copyright © 2018. Published by Elsevier Inc.
Full Text Available Iwona Zaporowska-Stachowiak,1,2 Grzegorz Kowalski,3 Jacek Łuczak,2 Katarzyna Kosicka,4 Aleksandra Kotlinska-Lemieszek,3 Maciej Sopata,3 Franciszek Główka4 1Chair and Department of Pharmacology, Poznan University of Medical Sciences, Poznan, Poland; 2Palliative Medicine In-patient Unit, University Hospital of Lord's Transfiguration, Poznan University of Medical Sciences, Poznan, Poland; 3Palliative Medicine Chair and Department, Poznan University of Medical Sciences, Poznan, Poland; 4Department of Physical Pharmacy and Pharmacokinetics, Poznan University of Medical Sciences, Poznan, Poland Background: Unacceptable adverse effects, contraindications to and/or ineffectiveness of World Health Organization step III "pain ladder" drugs causes needless suffering among a population of cancer patients. Successful management of severe cancer pain may require invasive treatment. However, a patient's refusal of an invasive procedure necessitates that clinicians consider alternative options. Objective: Intrathecal bupivacaine delivery as a viable treatment of intractable pain is well documented. There are no data on rectal bupivacaine use in cancer patients or in the treatment of cancer tenesmoid pain. This study aims to demonstrate that bupivacaine administered rectally could be a step in between the current treatment options for intractable cancer pain (conventional/conservative analgesia or invasive procedures, and to evaluate the effect of the mode of administration (intrathecal versus rectal on the bupivacaine plasma concentration.Cases: We present two Caucasian, elderly inpatients admitted to hospice due to intractable rectal/tenesmoid pain. The first case is a female with vulvar cancer, and malignant infiltration of the rectum/vagina. Bupivacaine was used intrathecally (0.25–0.5%, 1–2 mL every 6 hours. The second case is a female with ovarian cancer and malignant rectal infiltration. Bupivacaine was adminstered rectally (0.05–0.1%, 100 m
Full Text Available Background: Pain is a common primary symptom of advanced cancer and metastatic disease, occurring in 50-75% of all patients. Although palliative care and pain management are essential components in oncology practice, studies show that these areas are often inadequately addressed. Materials and Methods: We randomly selected 152 patients receiving palliative radiotherapy (PRT from October 2006 to August 2008, excluding metastatic bone lesions. Patients′ records were studied retrospectively. Results: A median follow-up of 21 weeks was available for 119 males and 33 females with a median age of 55 years. Maximum (60% patients were of head and neck cancers followed by esophagus (14%, lung (10% and others. Dysphagia, growth/ulcer and pain were the chief indications for PRT. Pain was present in 93 (61% cases out of which, 56 (60% were referred to pain clinic. All except one consulted pain clinic with a median pain score of 8 (0-10 point scale. Fifty-three of these 56 patients (96% received opioid-based treatment with adequate pain relief in 33% cases and loss of follow-up in 40% cases. Only five (3% cases were referred to a hospice. Twenty-two (14% cases were considered for radical treatment following excellent response to PRT. Conclusion: In this selective sample, the standard of analgesic treatment was found to be satisfactory. However, there is a lot of scope for improvement regarding referral to pain clinic and later to the hospice. Patients′ follow-up needs to be improved along with future studies evaluating those patients who were considered for further RT till radical dose. Programs to change the patients′ attitude towards palliative care, physicians′ (residents′ training to improve communication skills, and institutional policies may be promising strategies.
Baker, Nicola; Armour, Kathy; Meystre, Chantal; Redwood, Sabi; Dawson, Angus
A diagnosis of cancer and anticipated death of a loved one has a significant impact on the whole family. Research has mainly focused on carers, with little emphasis on the wider, long-term implications. To explore the cancer beliefs of patients with advanced cancer and their relatives. The focus was on their lived experiences and how these affected their beliefs, attitudes and constructions of cancer risk. 27 in-depth, semi-structured interviews were conducted with advanced breast, colorectal or lung cancer patients and their close relatives. Interviews were recorded and transcribed verbatim. Data was analysed using the constant comparison method. A core category of fear, helplessness and fatalism emerged from the data. Family history was the most salient cancer risk factor and a diagnosis of advanced cancer increased perceptions of vulnerability for first-degree relatives. For relatives, the uncertainty and chaotic loss of control that accompanied an advanced cancer diagnosis resulted in multiple levels of fear and intensely negative or fatalistic attitudes to cancer. In contrast, patients held less negative views of cancer. They described several means of regaining control, including the importance of leaving a legacy - the hope that their situation would have a positive impact on others in the future. Despite the prominence of 'prevention' in definitions of palliative care, services have evolved that are largely professional led and reactive. Adopting a health promoting approach based on empowerment is important, not just for improving care, but also increasing perceptions of control that may reduce negative cancer beliefs. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Full Text Available Pancreatic cancer is devastating due to its poor prognosis. Patients require a multidisciplinary approach to guide available options, mostly palliative because of advanced disease at presentation. Palliation including relief of biliary obstruction, gastric outlet obstruction, and cancer-related pain has become the focus in patients whose cancer is determined to be unresectable. Endoscopic stenting for biliary obstruction is an option for drainage to avoid the complications including jaundice, pruritus, infection, liver dysfunction and eventually failure. Enteral stents can relieve gastric obstruction and allow patients to resume oral intake. Pain is difficult to treat in cancer patients and endoscopic procedures such as pancreatic stenting and celiac plexus neurolysis can provide relief. The objective of endoscopic palliation is to primarily address symptoms as well improve quality of life.
On 27th June 2007, Malawi's first dedicated palliative care centre, Ndi Moyo, was officially opened by the Honourable. Marjorie Ngaunje, the then Minister of Health. Over 260 patients have registered since August 2006 when they first started to receive treatment for relief of severe and chronic pain which is frequently related ...
de Visser, Marianne; Oliver, David J.
Purpose of review Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating
Jun 25, 2015 ... 2 Nephrology Unit, Department of Internal Medicine, Federal Medical Centre Umuahia, Abia ... Key words: Palliative care, pain control, hospice, spirituality, cancer, end-stage organ ... surgeons, nurses, pharmacists, laboratory.
Cowley, Alison; Evans, Catrin; Bath-Hextall, Fiona; Cooper, Joanne
Esophagogastric cancer is the fifth most common malignancy and its incidence is increasing. The disease progresses quickly and five-year survival rates are poor. Treatment with palliative intent is provided for the majority of patients but there remains a lack of empirical evidence on the most effective service models to support esophagogastric cancer patients. The overall objective of this systematic review was to synthesize the best available evidence on the experiences and perceptions of patients and health professionals with regard to the care of people diagnosed with palliative esophagogastric cancer. The review considered studies that included patients diagnosed with palliative esophagogastric cancer and any health professionals involved in the delivery of palliative care to this patient group in a hospital, home or community setting. The review considered studies that investigated the experiences and perceptions of people diagnosed with palliative esophagogastric cancer and staff working with these people. Studies that were carried out in any setting, including in-patient and outpatient areas, specialist cancer and non-specialist palliative care services and those were any patient were in receipt or had experiences of palliative care services were considered. All types of health practitioners delivering palliative care to esophagogastric cancer patients were considered. Studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research, feminist research and narrative approaches were considered. Mixed methods studies were considered in the review only if qualitative findings were reported separately. A three-step search strategy was utilized. A total 11 databases were searched for studies from 2000 onward, followed by hand searching of reference lists. Methodological quality was assessed using the Joanna Briggs Institute Qualitative Assessment and Review Instrument critical
In this thesis, four aspects of advanced cancer care in Indonesia have been studied: (1) The identification of problems and needs of patients with advanced cancer in Indonesian hospitals, with a comparison to a comparable group of patients in the Netherlands. (2) Assessment whether the problems of
Full Text Available Diminishing treatment alternatives, losing hope for a possible recovery, insufficient control of pain and inability to provide the necessary technical support lead palliative care to bring multiple problems with itself. Along with technical and professional challenges, palliative care can put a humanitarian strain on the nurse. Caring for a dying patient is a worrisome experience which causes spiritual pain. An increase in nurses’ death anxiety may cause unwillingness to be together with a dying patient. In terms of the end of life, it is expected that the nurse stands by patient’s family to help them in sustaining their psychosocial wellness. In order to meet this expectation, nurses should get a qualitative training for end of life care along with good interpersonal communication skills and coping strategies.
Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl
Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care. . The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care. . This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations. . Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
Hoek, P.D.; Schers, H.J.; Bronkhorst, E.M.; Vissers, K.C.P.; Hasselaar, J.G.J.
BACKGROUND: Teleconsultation seems to be a promising intervention for providing palliative care to home-dwelling patients; however, its effect on clinically relevant outcome measures remains largely unexplored. Therefore, the purpose of this study was to determine whether weekly teleconsultations
Tewes, Mitra; Rettler, Teresa; Wolf, Nathalie; Hense, Jörg; Schuler, Martin; Teufel, Martin; Beckmann, Mingo
Early integration of palliative care (PC) is recommended. The determination of predictors for patients' request for PC may guide implementation in clinical practice. Toward this end, we analyzed the symptom burden and distress of cancer patients in outpatient care and examined their need and request for PC. Between October 2013 and March 2016, 705 patients receiving outpatient cancer treatment took part in the survey. We used the new MInimal DOcumentation System to detect symptom clusters. Additionally, patients' request for palliative and psychosocial support was assessed. Groups of patients with PC request were compared to patients without PC request regarding their symptom clusters. Logistic regression analysis was applied to discover significant predictors for the requested inclusion of PC. A total of 159 patients (25.5%) requested additional support by PC. Moderate and severe tiredness (40.3%), weakness (37.9%), pain (25.0%), loss of appetite (22.3%), and dyspnea (19.1%) were the most frequent symptoms. The group of patients requesting PC differed significantly in terms of pain, nausea, dyspnea, constipation, weakness, loss of appetite, tiredness, depression, and anxiety from patients without request for PC (p < .01). The perceived need for PC was identified by the significant predictors "depression," "anxiety," and "weakness" with an explained variance of 22%. Combining a standardized screening questionnaire and the assessment of patients' request for PC allows systematic monitoring for patients' need for PC in a large Medical Oncology clinic. Depression, anxiety, and weakness are predictors of requesting PC service by patients receiving outpatient cancer treatment.
de la Cruz, Maxine; Ransing, Viraj; Yennu, Sriram; Wu, Jimin; Liu, Diane; Reddy, Akhila; Delgado-Guay, Marvin; Bruera, Eduardo
Delirium is a common neuropsychiatric condition seen in patients with severe illness, such as advanced cancer. Few published studies are available of the frequency, course, and outcomes of standardized management of delirium in advanced cancer patients admitted to acute palliative care unit (APCU). In this study, we examined the frequency, characteristics, and outcomes of delirium in patients with advanced cancer admitted to an APCU. Medical records of 609 consecutive patients admitted to the APCU from January 2011 through December 2011 were reviewed. Data on patients' demographics; Memorial Delirium Assessment Scale (MDAS) score; palliative care specialist (PCS) diagnosis of delirium; delirium etiology, subtype, and reversibility; late development of delirium; and discharge outcome were collected. Delirium was diagnosed with MDAS score ≥7 and by a PCS using Diagnostic and Statistical Manual, 4th edition, Text Revision criteria. All patients admitted to the APCU received standardized assessments and management of delirium per best practice guidelines in delirium management. Of 556 patients in the APCU, 323 (58%) had a diagnosis of delirium. Of these, 229 (71%) had a delirium diagnosis on admission and 94 (29%) developed delirium after admission to the APCU. Delirium reversed in 85 of 323 episodes (26%). Half of patients with delirium (n = 162) died. Patients with the diagnosis of delirium had a lower median overall survival than those without delirium. Patients who developed delirium after admission to the APCU had poorer survival (p ≤ .0001) and a lower rate of delirium reversal (p = .03) compared with those admitted with delirium. More than half of the patients admitted to the APCU had delirium. Reversibility occurred in almost one-third of cases. Diagnosis of delirium was associated with poorer survival. ©AlphaMed Press.
Amano, Koji; Morita, Tatsuya; Miyamoto, Jiro; Uno, Teruaki; Katayama, Hirofumi; Tatara, Ryohei
Few studies have investigated the need for nutritional support in advanced cancer patients in palliative care settings. Therefore, we conducted a questionnaire to examine the relationship between the perception of need for nutritional support and cancer cachexia and the prevalence of specific needs, perceptions, and beliefs in nutritional support. We conducted a questionnaire in palliative care settings. Patients were classified into two groups: (1) non-cachexia/pre-cachexia and (2) cachexia/refractory cachexia. A total of 117 out of 121 patients responded (96.7%). A significant difference was observed in the need for nutritional support between the groups: non-cachexia/pre-cachexia (32.7%) and cachexia/refractory cachexia (53.6%) (p = 0.031). The specific needs of patients requiring nutritional support were nutritional counseling (93.8%), ideas to improve food intake (87.5%), oral nutritional supplements (83.0%), parenteral nutrition and hydration (77.1%), and tube feeding (22.9%). The top perceptions regarding the best time to receive nutritional support and the best medical staff to provide nutritional support were "when anorexia, weight loss, and muscle weakness become apparent" (48.6%) and "nutritional support team" (67.3%), respectively. The top three beliefs of nutritional treatments were "I do not wish to receive tube feeding" (78.6%), "parenteral nutrition and hydration are essential" (60.7%), and "parenteral hydration is essential" (59.6%). Patients with cancer cachexia expressed a greater need for nutritional support. They wished to receive nutritional support from medical staff when they become unable to take sufficient nourishment orally and the negative impact of cachexia becomes apparent. Most patients wished to receive parenteral nutrition and hydration.
Suita, Tomoko; Kato, Rika; Fujita, Misao; Hidaka, Kumi; Iijima, Shohei
Counseling for patients with cancer by a certified nurse in palliative care began in April 2011 in Minoh City Hospital. Counseling was provided immediately after a patient was informed by the treating physician of a primary diagnosis of cancer, a metastatic recurrence, or a decision to terminate cancer therapy. We examined the patient's support system after the counseling ended. The number of patients receiving end-of-life support with home or hospital care rapidly increased from 118 prior to the program's beginning to 186. The number of patients counseled was comparable to the rapid increase in their number(n=68). New cases in the outpatient department comprised 59% of all patients, of which, 45% began supportive counseling, with 43%of them ultimately returning home. Of the new cases receiving counseling in the hospital, 34%eventually returned home after discharge, and the highest percentage of discharges were to a palliative care unit or hospice program (48%). The initiation of counseling in the outpatient department allowed us to provide sufficient time to make decisions about appropriate places for end-of-life care. Cooperation with the patients' physicians was necessary to provide counseling from the outpatient department. Our findings suggest the importance of sharing the patients' medical and social information among the staff when necessary.
Nikbakht-Van de Sande, C V M Vahedi; van der Rijt, C C D; Visser, A Ph; ten Voorde, M A; Pruyn, J F A
Although network formation is considered an effective method of stimulating the integrated delivery of palliative care, scientific evidence on the usefulness of network formation is scarce. In 1998 the Ministry of Health of The Netherlands started a 5-year stimulation program on palliative care by founding and funding six regional Centres for the Development of Palliative Care. These centers were structured around pivotal organizations such as university hospitals and comprehensive cancer centers. As part of the stimulation program a locoregional network model was introduced within each center for the Development of Palliative Care to integrate palliative care services in the Dutch health care system. We performed a study on network formation in the southwestern area of The Netherlands with 2.4 million inhabitants. The study aimed to answer the following questions: (1) how do networks in palliative care develop, which care providers participate and how do they function? (2) which are the achievements of the palliative care networks as perceived by their participants? (3) which are the success factors of the palliative care networks according to their participants and which factors predict the achievements? Between September 2000 and January 2004 eight local palliative care networks in the region of the Center for Development of Palliative Care-Rotterdam (southwestern area of The Netherlands) were closely followed to gain information on their characteristics and developmental course. At the start of the study semistructured interviews were held with the coordinators of the eight networks. The information from these interviews and from the network documents were used to constitute a questionnaire to assess the opinions and experiences of the network participants. According to the vast majority of responders, the most important reason to install the networks was the lack of integration between the existing local health care services. The networks were initiated to
The integral search for improved living conditions for those patients with gastric cancer who have not received curative surgical treatment continues to challenge the knowledge, dexterity and ethical foundations of medical teams. The justification for palliative treatment must be based on a thorough consideration of the available options and the particular situation in each case. This article reviews endoscopic therapy with auto expandable prosthetics for palliative treatment of gastric cancer, as well as the scientific evidence that supports its use and the factors that determine its indication.
Duncan, Janet; Spengler, Emily; Wolfe, Joanne
High-quality pediatric palliative care should be an expected standard in the United States, especially since the publication of the numerous position statements such as "Precepts of Palliative Care for Children and Adolescents and Their Families," a joint statement created by the Association of Pediatric Oncology Nurses, the National Association of Neonatal Nurses, and the Society of Pediatric Nurses. Although many barriers still exist, dedicated individuals and teams strive to promote models of excellence and improve care for children with life-threatening conditions and their families. The Pediatric Advanced Care Team, a joint project of Dana-Farber Cancer Institute and Children's Hospital, Boston, is one such interdisciplinary pediatric palliative care consultation service. Founded in 1997, we have grown and learned from formal study and our extensive clinical work with families, children, and our colleagues. This article describes our journey as an interdisciplinary team forging a new service within two renowned medical institutions in which historically the primary emphasis of care has been on cure and innovation. Although these values remain, our work has resulted in an increased acceptance of balancing treatment of the underlying disease or condition along with treatment of the physical, psychosocial, and spiritual needs of the child and family through life or death. One of our goals is to help promote a balance of hope for cure with hope for comfort, dignity, and integrity for every child and family.
Mercadante, Sebastiano; Porzio, Giampiero; Caruselli, Amanda; Aielli, Federica; Adile, Claudio; Girelli, Nicola; Casuccio, Alessandra
Cancer patients with a history of alcoholism may be problematic. The frequency of alcoholism among patients with advanced cancer has never been reported in Italy or other European countries. The aim of this prospective study was to determine the frequency of alcoholism, assessed with a simple and validated instrument, among patients with advanced cancer who were referred to two different palliative care settings: an acute inpatient palliative care unit (PCU) of a comprehensive cancer center in a metropolitan area and a home care program (HCP) in a territorial district, localized in the mountains of Italy. A consecutive sample of patients admitted to an inpatient PCU and to an HCP was assessed for a period of eight months. Each patient who agreed to be interviewed completed the Cut down, Annoyed, Guilty, Eye-opener (CAGE) questionnaire. Patients were then interviewed informally to gather information about their history with alcohol. In total, 443 consecutive patients were surveyed; data from 249 to 194 patients were collected in the PCU and HCP, respectively, in the eight-month period. The mean age was 66.4 (SD 12.7) years, and 207 were males. The mean Karnofsky level was 54.2 (SD 14.6). Eighteen patients were CAGE positive (4.06%). Males (Pearson Chi-squared, P = 0.027) and younger patients (analysis of variance test, P = 0.009) were more likely to be CAGE positive. Informal interviews revealed that 17 patients (3.83%) were alcoholics or had a history of alcoholism, and that alcoholism was strongly correlated with CAGE (Pearson Chi-squared, P alcoholism. As CAGE patients express more symptom distress, it is important to detect this problem with a simple tool that has a high sensitivity and specificity and is easy to use even in patients with advanced disease. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Ullrich, Anneke; Ascherfeld, Lilian; Marx, Gabriella; Bokemeyer, Carsten; Bergelt, Corinna; Oechsle, Karin
This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for "bodily pain", FCs' quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80-83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs' satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.
Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro
Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort. Copyright © 2016 Elsevier Inc. All rights reserved.
Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J
Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.
Maltoni, Marco; Scarpi, Emanuela; Nanni, Oriana
The aim of this review was to present and comment on recent data published on palliative sedation in palliative and end-of-life care. Palliative sedation is a medical procedure used to deal with the refractory symptoms occurring in the advanced stages of cancer. It has clinical, nursing, relational and ethical implications, making it a highly sensitive issue. Over the last 12 months, a number of authors have published interesting new findings on different areas of palliative sedation, that is prevalence, indications, monitoring, duration and choice of drugs. In particular, a clear definition of palliative sedation and of its more pronounced form, deep continuous sedation (DCS), has emerged. It has been confirmed that, when performed in the correct way and with the right aims, palliative sedation does not have a detrimental impact on survival. Recent findings confirm that palliative sedation is an integral part of a medical palliative care approach and is needed in certain clinical situations. It is a legitimate clinical practice from any ethical point of view. While oncologists should have a basic knowledge of the procedure, its in depth study is a core competency for palliative care physicians.
This thesis is about improving aspects of palliative care for children, and covers three different areas of quality of care. First of all, palliative care should be anticipating. To be able to deliver this anticipating care, caregivers should know what to expect. The first two chapters of the thesis
Full Text Available BackgroundPalliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries.ObjectivesOur aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting.SettingBangabandu Sheikh Mujib Medical University (BSMMU is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU.ResultsWe describe four key elements which were crucial for the success of this program: (1 raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care; (2 providing education and training on pediatric palliative care for clinical staff; (3 forming a pediatric palliative care team; and (4 collecting data to characterize the need for pediatric palliative care.ConclusionThis model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.
Long, Carol O
Culture is a fundamental part of one's being. Spirituality is integrated with culture and both play a significant role in a person's journey through life. Yet, culture and spirituality are often misunderstood and may not seem to be important in healthcare settings. For adults with cancer and their families, this cannot be ignored. This paper reviews The Purnell Model of Cultural Competence as a framework for considering culture and spirituality in healthcare and discusses the importance of acknowledging and incorporating practices that support culture and spirituality in healthcare settings. Examples of how to include cultural and spiritual care in palliative and end-of-life care in healthcare settings are provided.
John Y Rhee
Funding: Arnhold Institute of Global Health at the Icahn School of Medicine at Mount Sinai, the African Palliative Care Association, the International Association for Hospice and Palliative Care, and the Institute for Culture and Society at the University of Navarra.
Cristina Anca COLIBABA
Full Text Available This article outlines learners’ difficulty in acquiring and practicing palliative medical skills necessary in medical procedures due to limited technologically state-of-the art language learning support to facilitate optimum access for medical students to the European medicine sector and offers as a potential solution the Palliative Care MOOC project (2014-1-RO01-KA203-002940. The project is co-financed by the European Union under the Erasmus+ program and coordinated by the Gr.T.Popa University of Medicine and Pharmacy Iasi, Romania. The article describes the project idea and main objectives, highlighting its focus and activities on developing innovative guidelines on standardized fundamental medical procedures, as well as clinical language and communication skills. The project thus helps not only medical lecturers and language teachers who teach medical students, but also the medical students themselves and the lay people involved in causalities.
Full Text Available This article is a case reflection of a personal encounter on the palliative care treatment required after the removal of a complicated case of a primary extra-gonadal retro-peritoneal endodermal sinus tumor (yolk sac tumor. This reflection is from the perspective of a recently graduated MD student who spent one month with an Indian pain management and palliative care team at the Institute Rotary Cancer Hospital (IRCH, All India Institute of Medical Sciences (AIIMS, New Delhi
Kizawa, Yoshiyuki; Yamamoto, Ryo
Although palliative care is assuming an increasingly important role in patient care, most physicians did not learn to provide palliative care during their medical training. To address these serious deficiencies in physician training in palliative care, government decided to provide basic palliative education program for all practicing cancer doctors as a national policy namely Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education(PEACE). The program was 2-days workshop based on adult learning theory and focusing on symptom management and communication. In this 9 years, 4,888 educational workshop has been held, and 93,250 physicians were trained. In prospective observational study, both knowledges and difficulties practicing palliative care were significantly improved. In 2017, the new palliative care education program will be launched including combined program of e-learning and workshop to provide tailor made education based on learner's readiness and educational needs in palliative care.
By the 1960s, the forces that had slowly turned medicine away from comfort toward a greater emphasis on cure had generated a need for better care of the dying and the chronically ill. With reference to the growth of peer-reviewed literature on palliative care, the history of this seemingly new specialty is traced through the hallmarks of professionalization to outline and document the changes in the leaders, the issues, the publications, and the treatment modalities over the last five decades. The focus is on Canada within an international context.
Hills, Judith; Paice, Judith A; Cameron, Jacqueline R; Shott, Susan
One's spirituality or religious beliefs and practices may have a profound impact on how the individual copes with the suffering that so often accompanies advanced disease. Several previous studies suggest that negative religious coping can significantly affect health outcomes. The primary aim of this study was to explore the relationship between spirituality, religious coping, and symptoms of distress among a group of inpatients referred to the palliative care consult service. Pilot study. The study was conducted in a large academic medical center with a comprehensive Palliative Care and Home Hospice Program. (1) National Comprehensive Cancer Network Distress Management Assessment Tool; (2) Pargament Brief Religious Coping Scale (Brief RCOPE); (3) Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp); (4) Puchalski's FICA; and (5) Profile of Mood States-Short Form (POMS-SF). The 31 subjects surveyed experienced moderate distress (5.8 +/- 2.7), major physical and psychosocial symptom burden, along with reduced function and significant caregiving needs. The majority (87.2%) perceived themselves to be at least somewhat spiritual, with 77.4% admitting to being at least somewhat religious. Negative religious coping (i.e., statements regarding punishment or abandonment by God) was positively associated with distress, confusion, depression, and negatively associated with physical and emotional well-being, as well as quality of life. Palliative care clinicians should be alert to symptoms of spiritual distress and intervene accordingly. Future research is needed to identify optimal techniques to address negative religious coping.
Any service improvement project requires planning, action and evaluation. Using a recognised quality improvement framework can offer a structured approach to implementing and assessing changes to patient care. This article describes how use of the Deming Cycle has helped to identify nurses\\' learning needs.
Graaff, F.M. de; Francke, A.L.; Muijsenbergh, M.E.T.C. van den; Geest, S. van der
Aims and objectives: To gain insight into the factors that influence communication between health professionals and Turkish and Moroccan immigrants in the palliative phase of cancer. Background: In palliative care, communication is crucial. The question, however, is whether Dutch healthcare
Borgsteede, S.D.; Deliens, L.; Francke, A.L.; Stalman, W.A.B.; Willems, D.L.; Eijk, T.T.M. van; Wal, G. van der
Object of the study: Epidemiological research into palliative care faces the problem of defining an adequate research population. Subjects in studies are alternately defined as patients receiving 'palliative care' , 'palliative treatment' or 'end of life care'. So far, it is not known how
Latorraca, Carolina de Oliveira Cruz; Martimbianco, Ana Luiza Cabrera; Pachito, Daniela Vianna; Pacheco, Rafael Leite; Riera, Rachel
Nineteen million adults worldwide are in need of palliative care. Of those who have access to it, 80% fail to receive an efficient management of symptoms. To assess the effectiveness and safety of mindfulness meditation for palliative care patients. We searched CENTRAL, MEDLINE, Embase, LILACS, PEDro, CINAHL, PsycINFO, Opengrey, ClinicalTrials.gov and WHO-ICTRP. No restriction of language, status or date of publication was applied. We considered randomised clinical trials (RCTs) comparing any mindfulness meditation scheme vs any comparator for palliative care. Cochrane Risk of Bias (Rob) Table was used for assessing methodological quality of RCTs. Screening, data extraction and methodological assessments were performed by two reviewers. Mean differences (MD) (confidence intervals of 95% (CI 95%)) were considered for estimating effect size. Quality of evidence was appraised by GRADE. Four RCTs, 234 participants, were included. All studies presented high risk of bias in at least one RoB table criteria. We assessed 4 comparisons, but only 2 studies showed statistically significant difference for at least one outcome. 1. Mindfulness meditation (eight weeks, one session/week, daily individual practice) vs control: statistically significant difference in favour of control for quality of life - physical aspects. 2. Mindfulness meditation (single 5-minute session) vs control: benefit in favour of mindfulness for stress outcome in both time-points. None of the included studies analysed safety and harms outcomes. Although two studies have showed statistically significant difference, only one showed effectiveness of mindfulness meditation in improving perceived stress. This study focused on one single session of mindfulness of 5 minutes for adult cancer patients in palliative care, but it was considered as possessing high risk of bias. Other schemes of mindfulness meditation did not show benefit in any outcome evaluated (low and very low quality evidence). © 2017 John Wiley
Sairenji, M; Okamoto, T; Motohashi, H; Kobayashi, O; Tsuburaya, A; Okugawa, T; Rino, Y; Tsukamoto, Y; Takamiya, M; Matoba, K
Depending upon the type of cancer involved, the period of the end stage varies greatly, and with it decreases the quality of life (QOL). In gastric cancer, for example, the terminal stage is usually short and the QOL diminishes abruptly. Thus, it takes time keeping this decrease in QOL to minimum, despite the complications, so that the patient's last days will be even somewhat more acceptable. Improvement in QOL for the patient who cannot eat due to recurrent gastric cancer can be effectively achieved by alleviation through IVH. With this in mind, the conditions consonant with the application of home IVH are as follows: 1) The patient's pain can be kept under control at home. 2) The patient wishes to remain. 3)There is sufficient human support at home. The caretakers in the family, and especially the key person(s) must exert much effort and labor and they need rest as well. Home medical care in the terminal stage presupposes a social environment involving day care, short stay, and hospice nursing facilities of all kinds. At present, public services of this kind differ with the community, much remains uninformed to public, and clinic-hospital networking will be needed more than ever. In this difficult situation, the home-care medical services provided by the private sector are effective. These services are only for the short term, of course, and there will be a financial problem. Various measures (tax deduction, public assistance) must be considered to support the patients and caretakers.
Paiva, Bianca Sakamoto Ribeiro; Carvalho, André Lopes; Lucchetti, Giancarlo; Barroso, Eliane Marçon; Paiva, Carlos Eduardo
Within the cancer palliative care setting, where both patients and family caregivers (FCs) undergo a transition from the end of curative treatment to palliative therapy, spirituality and religiousness (S/R) may be a strategy to help the patients and FCs better cope with the disease, in addition to exerting a positive impact on symptoms, particularly emotional symptoms. The present study aimed to understand how S/R influence FCs of cancer patients undergoing palliative care. This study was an exploratory and descriptive qualitative study. The qualitative approach to the data was based on Bardin's content analysis technique. The consolidated criteria for reporting qualitative research (COREQ-32) was used in the description of the results. Thirty FCs of individuals with advanced cancer undergoing palliative care were included. Analysis of the FCs' narratives indicated that the FCs considered that religiousness and faith in God or a Supreme Being provide them with the strength to cope with the suffering associated with the care of relatives with advanced cancer. Many FCs emphasized that talking about God was somehow comforting and made them feel at peace with themselves. Four categories were identified in the FCs' narratives: (1) increase in faith and closeness to God becomes stronger, (2) rethink life issues, (3) negative interference in the extrinsic religiosity, and (4) quest for religiousness to gain strength or support. A conceptual framework was developed. The results of the present study indicated that S/R are a coping strategy frequently used by FCs of individuals with advanced cancer. The perceptions of the FCs interviewed in the present study corresponded to the four distinct categories related to spirituality and religiousness.
Widger, Kimberley; Friedrichsdorf, Stefan; Wolfe, Joanne; Liben, Stephen; Pole, Jason D; Bouffet, Eric; Greenberg, Mark; Husain, Amna; Siden, Harold; Whitlock, James A; Rapoport, Adam
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a 'Train-the-Trainer' model. In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, 'Master Facilitators' will train 'Regional Teams' affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to 'End-Users' in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of
Yoshino, Kazuo; Nishiumi, Noboru; Masuda, Ryota; Iwazaki, Masayuki; Saito, Yuki; Tokuda, Yutaka
Many cancer patients suffer from rapidly-progressing dyspnea that is difficult to relieve. The subjects were 26 patients who had dyspnea that was difficult to relieve. The Numeric Rating Scale was used to evaluate their dyspnea. For all patients, the cause of the dyspnea was investigated by CT and x-rays. The principal causes of the dyspnea were pleural effusion that increased daily, complications from pneumonia, massive ascites, multiple metastatic lung tumors and atelectasis, recurrent laryngeal nerve paralysis and narrowing secondary airway compression. Dyspnea was caused by a variety of conditions that overlapped over time, intensifying patients' discomfort. Among 14 patients for whom we recommended treatment with sedation, only 8 of them consented. Among the patients who were treated with sedation, the median interval between the exacerbation of dyspnea and death was 16 days; among non-sedated patients it was 18 days. Palliative care physicians who specialize in the respiratory system can, to some extent, predict the occurrence of rapidly progressive dyspnea in cancer patients. It is important to explain the methods of relieving dyspnea to the patient, the patient's family, and the oncologist early, so that decisions on how to manage dyspnea can be made in advance. (author)
Mercadante, Sebastiano; Adile, Claudio; Ferrera, Patrizia; Cortegiani, Andrea; Casuccio, Alessandra
Delirium is often unrecognized in cancer patients. The aim of this study was to investigate the prevalence of delirium assessed by the Memorial Delirium Assessment Scale (MDAS) and possible associated factors on admission to an acute palliative/supportive care unit (APSCU). The secondary outcome was to assess changes in MDAS and symptom burden at time of discharge. A consecutive sample of advanced cancer patients who were admitted to an APSCU was prospectively assessed for a period of 10 months. Patient demographics, including age, gender, primary diagnosis, Karnofsky status, stage of disease, and educational level were collected. The Edmonton Symptom Assessment Scale (ESAS) and the MDAS were measured at hospital admission and discharge. A total of 314 patients were surveyed. Of 292 patients with MDAS available at T0, 74 (25.3%) and 24 (8.2%) had a MDAS of 7-12 and ≥13, respectively. At discharge, there was a significant decrease in the number of patients with a MDAS ≥7/30. Higher values of MDAS were associated with age (p = .028), a lower Karnofsky status (p symptoms (p = .026), hospital stay (p = .038) and death (p Delirium is highly prevalent in patients admitted to APSCU, characterized by a low mortality due to early referral. Comprehensive assessment and treatment may allow a decrease in the level of cognitive disorders and symptom burden.
Claudio, Celeste H; Dizon, Zoelle B; October, Tessie W
Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. A cross-sectional study of "palliative care" search results. Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention "quality of life" and "relief from symptoms and stress." None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.
Silbermann, Michael; Fink, Regina M; Min, Sung-Joon; Mancuso, Mary P; Brant, Jeannine; Hajjar, Ramzi; Al-Alfi, Nesreen; Baider, Lea; Turker, Ibrahim; ElShamy, Karima; Ghrayeb, Ibtisam; Al-Jadiry, Mazin; Khader, Khaled; Kav, Sultan; Charalambous, Haris; Uslu, Ruchan; Kebudi, Rejin; Barsela, Gil; Kuruku, Nilgün; Mutafoglu, Kamer; Ozalp-Senel, Gulsin; Oberman, Amitai; Kislev, Livia; Khleif, Mohammad; Keoppi, Neophyta; Nestoros, Sophia; Abdalla, Rasha Fahmi; Rassouli, Maryam; Morag, Amira; Sabar, Ron; Nimri, Omar; Al-Qadire, Mohammad; Al-Khalaileh, Murad; Tayyem, Mona; Doumit, Myrna; Punjwani, Rehana; Rasheed, Osaid; Fallatah, Fatimah; Can, Gulbeyaz; Ahmed, Jamila; Strode, Debbie
Cancer incidence in Middle Eastern countries, most categorized as low- and middle-income, is predicted to double in the next 10 years, greater than in any other part of the world. While progress has been made in cancer diagnosis/treatment, much remains to be done to improve palliative care for the majority of patients with cancer who present with advanced disease. To determine knowledge, beliefs, barriers, and resources regarding palliative care services in Middle Eastern countries and use findings to inform future educational and training activities. Descriptive survey. Fifteen Middle Eastern countries; convenience sample of 776 nurses (44.3%), physicians (38.3%) and psychosocial, academic, and other health care professionals (17.4%) employed in varied settings. Palliative care needs assessment. Improved pain management services are key facilitators. Top barriers include lack of designated palliative care beds/services, community awareness, staff training, access to hospice services, and personnel/time. The nonexistence of functioning home-based and hospice services leaves families/providers unable to honor patient wishes. Respondents were least satisfied with discussions around advance directives and wish to learn more about palliative care focusing on communication techniques. Populations requiring special consideration comprise: patients with ethnic diversity, language barriers, and low literacy; pediatric and young adults; and the elderly. The majority of Middle Eastern patients with cancer are treated in outlying regions; the community is pivotal and must be incorporated into future plans for developing palliative care services. Promoting palliative care education and certification for physicians and nurses is crucial; home-based and hospice services must be sustained.
Goodwin, Laura; Price, Annabel; Lee, William; Rayner, Lauren; Moorey, Stirling; Monroe, Barbara; Sykes, Nigel; Hansford, Penny; Higginson, Irene J; Hotopf, Matthew
The Mental Adjustment to Cancer Scale is an assessment tool commonly used to measure coping in cancer patients, which characterises adaptive coping under the label of 'fighting spirit'. This study explores adaptation in patients with advanced cancer, by examining the factor structure of the Mental Adjustment to Cancer Scale. Further aims were to examine associations between types of coping and psychological outcomes measured at the same time (time 1) and 4 weeks after referral to palliative care services (time 2). A cross-sectional study with a follow-up assessment 4 weeks later. Factor analysis examined the structure of the Mental Adjustment to Cancer Scale at time 1. A total of 275 patients with advanced cancer receiving palliative care, of whom 193 took part at follow-up. This study provided evidence for the internal consistency and validity of a new scale of 'acceptance and positivity' for use in advanced cancer patients. Patients with a desire for hastened death had lower acceptance and positivity, and patients with higher global quality of life reported a higher level. Social support was positively associated with acceptance and positivity. Higher scores on the acceptance and positivity scale were associated with reduced odds of a desire for hastened death at time 2. Adaptation to advanced cancer differs from adaptation to early stage cancer, comprising a general acceptance of the illness and trying to make the most of the time that is left. Individuals with low social support were less likely to evidence appropriate adaptation to their illness.
van den Heuvel, Wim J. A.; Olaroiu, Marinela
Palliative care is directed to maintenance of quality of life and to prevent and to relief suffering of those with a life-threatening disease. Palliative care does not only concern the patient, but also the quality of life of family members and it deals with physical symptoms as well as with
... to you, need help with: Coping with the stress of a serious illness Emotional support Spiritual or religious support Talking with your family about your illness and what is important to ... What Is Palliative Care Definition Pediatric Palliative Care Disease Types FAQ Handout for ...
Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo
Background. It is unclear how oncologists’ attitudes toward end-of-life (EOL) care affect the delivery of care. The present study examined the association between oncologists’ EOL care attitudes and (a) timely specialist palliative care referral, (b) provision of supportive care, and (c) EOL cancer treatment decisions. Methods. We randomly surveyed 240 oncology specialists at our tertiary care cancer center to assess their attitudes toward EOL care using a score derived from the Jackson et al. qualitative conceptual framework (0 = uncomfortable and 8 = highly comfortable with EOL care). We determined the association between this score and clinicians’ report of specialist palliative care referral, provision of supportive care, and EOL cancer treatment decisions. Results. Of the 182 respondents (response rate of 76%), the median composite EOL care score was 6 (interquartile range, 5–7). A higher EOL score was significantly associated with solid tumor oncology (median 7 vs. 6 for hematologic oncology; p = .003), a greater willingness to refer patients with newly diagnosed cancer to specialist palliative care (median, 7 vs. 6; p = .01), greater comfort with symptom management (median, 6 vs. 5; p = .01), and provision of counseling (median, 7 vs. 4; p EOL care was associated with higher rates of specialist palliative care referral and self-reported primary palliative care delivery. More support and education are needed for oncologists who are less comfortable with EOL care. Implications for Practice: In the present survey of oncology specialists, most reported that they were comfortable with end-of-life (EOL) care, which was in turn, associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care. The results of the present study highlight the need for more support and education for oncologists less comfortable with EOL care because their patients might receive lower levels of both primary and secondary
Jeanfaivre, T; Souday, V; Chaleil, D; Maillet, F; Tuchais, E
Anorexia is one of the most frequent complaints in patients who have reached the palliative-care phase of lung cancer. Megestrol acetate (or medroxyprogesterone acetate) and corticosteroids have been used with success, but the effect of their combination remains unknown. We conducted a phase II trial to assess the impact of combination therapy. Patients with lung cancer given palliative care and who developed anorexia with or without weight loss were given 320 mg/d megestrol acetate in 2 doses and 40 mg/d prednisolone in one dose in the morning for 1 month. The principal outcome criterion was anorexia assessed on a visual analog scale prior to treatment and then at day 15 and day 30. Variation in daily calorie intake and weight were also recorded. We used an Armitage sequential plan to determine the number of inclusions necessary and the preference method (closed schema) to evaluate the principal outcome criterion. Inclusions were stopped after the eighth patient (giving panorexia in patients with lung cancer in the palliative-care phase and allowed a significant improvement in calorie intake and body weight.
Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Tsuneto, Satoru; Shima, Yasuo
End-of-life (EOL) cancer care in general hospitals and home care has not previously been evaluated in Japan. This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide designated cancer centers, inpatient palliative care units (PCUs), and home hospices in Japan. We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in March 2008 for 56 designated cancer centers and in June 2007 for 100 PCUs and 14 home hospices. Outcomes were overall care satisfaction, structure and process of care (Care Evaluation Scale), and achievement of a good death (Good Death Inventory). In designated cancer centers, PCUs, and home hospices, 2794 (response rate 59%), 5312 (response rate 69%), and 292 (response rate 67%) bereaved family members participated, respectively. Mean scores for overall care satisfaction were high for all places of death, at 4.3 ± 1.2 for designated cancer centers, 5.0 ± 1.2 for PCUs, and 5.0 ± 1.0 for home hospices. Designated cancer centers showed significantly lower ratings than PCUs and home hospices for structure and process of care and achievement of a good death (P = 0.0001 each). Home hospices were rated significantly higher than PCUs for achievement of a good death (P = 0.0001). The main findings of this study were: (1) overall, bereaved family members were satisfied with end-of-life care in all three places of death; (2) designated cancer centers were inferior to PCUs and home hospices and had more room for improvement; and 3) home hospices were rated higher than PCUs for achieving a good death, although home hospices remain uncommon in Japan. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Full Text Available Abstract Background Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients. Methods/Design Mortality followback survey (with a nested case-control study of home vs. hospital deaths conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death. Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified. Discussion Collecting data on end
Koper, I.; Heide, A.; Janssens, M.J.P.A.; Swart, S.; Perez, R.S.G.M.; Rietjens, J.A.C.
Purpose: Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it
LeBlanc, Thomas W; Lodato, Jordan E; Currow, David C; Abernethy, Amy P
Palliative care is increasingly viewed as a necessary component of cancer care, especially for patients with advanced disease. Rigorous clinical trials are thus needed to build the palliative care evidence base, but clinical research-especially participant recruitment-is difficult. Major barriers include (1) patient factors, (2) "gatekeeping," and (3) ethical concerns. Here we discuss an approach to overcoming these barriers, using the Palliative Care Trial (PCT) as a case study. The PCT was a 2 × 2 × 2 factorial randomized controlled trial (RCT) of different service delivery models to improve pain control in the palliative setting. It used a recruitment protocol that fused evidence-based strategies with principles of "social marketing," an approach involving the systematic application of marketing techniques. Main components included (1) an inclusive triage algorithm, (2) information booklets targeting particular stakeholders, (3) a specialized recruitment nurse, and (4) standardization of wording across all study communications. From an eligible pool of 607 patients, the PCT enrolled 461 patients over 26 months. Twenty percent of patients referred to the palliative care service were enrolled (76% of those eligible after screening). Several common barriers were minimized; among those who declined participation, family disinterest was uncommon (5%), as was the perception of burden imposed (4%). Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. A carefully crafted recruitment and retention protocol can be effective. Our experience with designing and deploying a social-marketing-based protocol shows the benefits of such an approach.
living with HIV worldwide. ∙ 100 million people worldwide could benefit. 5 from basic palliative care. Chronic medical diseases including malignancies are becoming of increasing public health importance in developing countries and although the burden of common cancers like cervical cancer is on the increase worldwide, ...
Delgado-Guay, Marvin Omar; Chisholm, Gary; Williams, Janet; Frisbee-Hume, Susan; Ferguson, Andrea O; Bruera, Eduardo
Regular assessments of spiritual distress/spiritual pain among patients in a supportive/palliative care clinic (SCPC) are limited or unavailable. We modified the Edmonton Symptom Assessment Scale (ESAS) by adding spiritual pain (SP) to the scale (0 = best, 10 = worst) to determine the frequency, intensity, and correlates of self-reported SP (≥1/10) (pain deep in your soul/being that is not physical) among these advanced cancer patients. We reviewed 292 consecutive consults of advanced cancer patients (ACPs) who were evaluated at our SCPC between October of 2012 and January of 2013. Symptoms were assessed using the new instrument (termed the ESAS-FS). The median age of patients was 61 (range = 22-92). Some 53% were male; 189 (65%) were white, 45 (15%) African American, and 34 (12%) Hispanic. Some 123 of 282 (44%) of ACPs had SP (mean (95% CI) = 4(3.5-4.4). Advanced cancer patients with SP had worse pain [mean (95% CI) = 5.3(4.8, 5.8) vs. 4.5(4.0, 5.0)] (p = 0.02); depression [4.2(3.7, 4.7) vs. 2.1(1.7, 2.6), p well-being [5.4(4.9, 5.8) vs. 4.5(4.1, 4.9), p = 0.0136]; and financial distress (FD) [4.4(3.9, 5.0) vs. 2.2(1.8, 2.7), p Spiritual pain correlated (Spearman) with depression (r = 0.45, p well-being (r = 0.27, p = 0.0006), nausea (r = 0.29, p = 0.0002), and financial distress (r = 0.42, p Spiritual pain, which is correlated with physical and psychological distress, was reported in more than 40% of ACPs. Employment of the ESAS-FS allows ACPs with SP to be identified and evaluated in an SCPC. More research is needed.
Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran
Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options. (orig.)
Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran [Great Ormond Street Hospital, Radiology Department, London (United Kingdom)
Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options. (orig.)
Palliative care (PC) positively impacts patient outcomes, decreases hospital admissions and improves quality of life. Despite evidence, PC resources are reported as under-utilised. Few studies have explored patient attitudes towards PC. This study evaluated patient attitudes towards PC. It was a prospective study conducted in oncology outpatient clinics. A 26-item questionnaire was distributed to those with metastatic cancer (N = 44). Sixty percent believed PC can make people ‘feel better’, 63.4% believed PC is offered when nothing more can be done. Most were unsure or disagreed that opioids are addictive. Eighty percent reported symptom control is more important than prolonging life. Sixty-one percent strongly agreed or agreed that ‘losing hope makes people die sooner’. Although PC was deemed beneficial, a significant relationship exists between familiarity with PC and thinking it’s offered when ‘nothing more can be done’. Lack of knowledge about opioids, preference for symptom control over life prolonging measures and the importance of hope were also emphasised.
Silbermann, Michael; Khleif, Amal; Tuncer, Murat; Pitsillides, Barbara; Shad, Aziza; Oberman, Amitai; Elshami, Mohammad; Gultekin, Murat; Daher, Michel; Tarawneh, Mohammed; Harford, Joe
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.
Provinciali, Leandro; Carlini, Giulia; Tarquini, Daniela; Defanti, Carlo Alberto; Veronese, Simone; Pucci, Eugenio
The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.
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Avoine-Blondin, Josianne; Parent, Véronique; Fasse, Léonor; Lopez, Clémentine; Humbert, Nago; Duval, Michel; Sultan, Serge
It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context. We selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year. Professionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child's non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools. The formulation of explicit criteria to assess the quality of life in this context, along with detailed
Mercadante, Sebastiano; Adile, Claudio; Ferrera, Patrizia; Casuccio, Alessandra
The aim of this prospective study was to determine the characteristics and symptom burden of advanced cancer patients with alcoholism problems and smoking, who were referred to an acute palliative/supportive care unit (ASPCU) of a comprehensive cancer center. Patients' characteristics, indications for admission, kind of admission, awareness of prognosis, and anticancer treatments were recorded. The Edmonton Symptom Assessment Scale (ESAS) was used to assess physical and psychological symptoms, and the CAGE questionnaire for the diagnosis of alcoholism. Patients were also divided in three groups: persistent smokers (PS), former smokers (FS), and non-smokers (NS). The Memorial Delirium Assessment Scale (MDAS) was used to assess the cognitive status of patients. Analgesic drugs and their doses at admission and discharge were recorded, as well opioid escalation index during hospital stay. Three hundred fourteen consecutive cancer patients were surveyed. Forty-seven (14.9%), 143 (45.5%), and 124 (39.5%) subjects were PS-patients, FS-patients, and NS-patients, respectively. Sixteen patients were CAGE-positive. Females were more frequently NS, while males were more frequently FS (p = 0.0005). Statistical differences were also observed in disease awareness among the categories of smoking (p = 0.048). No statistical differences were found in ESAS items, except for drowsiness at T0 in NS-patients. Differences were found in OME and OEI, although the large variability of data did not determined a statistical difference. Higher values of nausea (at T0, p = 0.0005), dyspnea (at T0 and TX, p = 0.08 and 0.023, respectively), and well-being (at TX p = 0.003) were reported in CAGE-positive patients. No correlation was found between CAGE-positive patients and smokers. Although smoking and alcoholism have obvious implications in advanced cancer patients, data remain controversial, as present data did provide limited data to confirm risk factors for advanced cancer patients
In this work we would like to describe the role of palliative medicine in the organizational frame of oncological care in Slovakia. Basic statistic data are revealing that number of beds in palliative medicine and hospices is shaped rather coincidently according to the reimbursement rates and the effort to reduce a number of chronic beds. Further on we would like to point out a distinction between palliative treatments of cancer and palliative medicine, a distinction between social care and hospice care, the role and relevance of palliative medicine and we bring about some suggestions how to improve the present situation. (author)
Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo
The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities
Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer
Communication about palliative care is a complex task frequently delayed until otherwise unavoidable. There is a need for discussion of palliative care to be viewed as a distinct communication task that is guided by empirical data. However, little is known of patient views and responses to these encounters. To explore patient views surrounding communication about palliative care and their responses to its discussion. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Three major themes evolved. (1) Death as unspeakable: death was expressed using only implicit, ambiguous or technical terms and perceived to be outside the parameters of medical interactions. (2) Palliative care as a euphemism for death: the term 'palliative care' was perceived to be used by health professionals as a tool to talk about dying and understood by patients as a euphemism for death. (3) Palliative care as unspeakable: 'palliative care' was personified by patients to mean not just death, but my death, in turn, also becoming unspeakable. This study provides important new patient insights and responses to the discussion of palliative care. Results demonstrate that the task of discussing palliative care remains complex, difficult and limited by our language. Greater consistency, sensitivity and sophistication are required when talking about palliative care to patients who may benefit from this care.
Gwyther, Liz; Brennan, Frank; Harding, Richard
The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as
Hui, David; Frisbee-Hume, Susan; Wilson, Annie; Dibaj, Seyedeh S.; Nguyen, Thuc; De La Cruz, Maxine; Walker, Paul; Zhukovsky, Donna S.; Delgado-Guay, Marvin; Vidal, Marieberta; Epner, Daniel; Reddy, Akhila; Tanco, Kimerson; Williams, Janet; Hall, Stacy; Liu, Diane; Hess, Kenneth; Amin, Sapna; Breitbart, William; Bruera, Eduardo
IMPORTANCE The use of benzodiazepines to control agitation in delirium in the last days of life is controversial. OBJECTIVE To compare the effect of lorazepam vs placebo as an adjuvant to haloperidol for persistent agitation in patients with delirium in the setting of advanced cancer. DESIGN, SETTING, AND PARTICIPANTS Single-center, double-blind, parallel-group, randomized clinical trial conducted at an acute palliative care unit at MD Anderson Cancer Center, Texas, enrolling 93 patients with advanced cancer and agitated delirium despite scheduled haloperidol from February 11, 2014, to June 30, 2016, with data collection completed in October 2016. INTERVENTIONS Lorazepam (3 mg) intravenously (n = 47) or placebo (n = 43) in addition to haloperidol (2 mg) intravenously upon the onset of an agitation episode. MAIN OUTCOMES AND MEASURES The primary outcome was change in Richmond Agitation-Sedation Scale (RASS) score (range, −5 [unarousable] to 4 [very agitated or combative]) from baseline to 8 hours after treatment administration. Secondary end points were rescue neuroleptic use, delirium recall, comfort (perceived by caregivers and nurses), communication capacity, delirium severity, adverse effects, discharge outcomes, and overall survival. RESULTS Among 90 randomized patients (mean age, 62 years; women, 42 [47%]), 58 (64%) received the study medication and 52 (90%) completed the trial. Lorazepam + haloperidol resulted in a significantly greater reduction of RASS score at 8 hours (−4.1 points) than placebo + haloperidol (−2.3 points) (mean difference, −1.9 points [95% CI, −2.8 to −0.9]; P haloperidol group required less median rescue neuroleptics (2.0 mg) than the placebo + haloperidol group (4.0 mg) (median difference, −1.0 mg [95% CI, −2.0 to 0]; P = .009) and was perceived to be more comfortable by both blinded caregivers and nurses (caregivers: 84% for the lorazepam + haloperidol group vs 37% for the placebo + haloperidol group; mean difference, 47
Schmidt-Wolf, G; Elsner, F; Lindena, G; Hilgers, R-D; Heussen, N; Rolke, R; Ostgathe, C; Radbruch, L
With a priority programme the German Cancer Aid supported the development of quality-assured outpatient palliative care to cover the whole country. The 12 regional pilot projects funded with the aim to improve outpatient palliative care in different models and different frameworks were concurrently monitored and evaluated. The supported projects, starting and ending individually, documented all patients who were cared for using HOPE (Hospice and palliative care evaluation) and MIDOS (Minimal documentation system for palliative patients). Total data were analyzed for 3239 patients decriptively. In addition to the quantitative data the experiences of the projects were recorded in a number of workshops (2008, 2009, 2010, and 2012). In particular, the experiences reported in the final meeting in July 2012 were considered for this article as well as the final reports for the German Cancer Aid. In the quantitative evaluation 85.6% of 3239 palliative care patients had a cancer diagnosis. In all model projects the goal of a network with close cooperation of primary providers, social support, and outpatient and inpatient specialist services has been achieved. For all projects, the initial financing of the German Cancer Aid was extremely important, because contracts with health insurance funds were negotiated slowly, and could then be built on the experiences with the projects. The participants of the project-completion meeting emphasized the need to carry out a market analysis before starting palliative care organizations considering the different regional structures and target groups of patients. Education, training and continuing education programs contribute significantly to the network. A reliably funded coordination center/case management across all institutions is extremely important. © Georg Thieme Verlag KG Stuttgart · New York.
Swart, Siebe J; Rietjens, Judith A C; van Zuylen, Lia; Zuurmond, Wouter W A; Perez, Roberto S G M; van der Maas, Paul J; van Delden, Johannes J M; van der Heide, Agnes
Palliative care is often focused on cancer patients. Palliative sedation at the end of life is an intervention to address severe suffering in the last stage of life. To study the practice of continuous palliative sedation for both cancer and noncancer patients. In 2008, a structured questionnaire was sent to 1580 physicians regarding their last patient receiving continuous sedation until death. A total of 606 physicians (38%) filled out the questionnaire, of whom 370 (61%) reported on their last case of continuous sedation (cancer patients: n=282 [76%] and noncancer patients: n=88 [24%]). More often, noncancer patients were older, female, and not fully competent. Dyspnea (odds ratio [OR]=2.13; 95% confidence interval [CI]: 1.22, 3.72) and psychological exhaustion (OR=2.64; 95% CI: 1.26, 5.55) were more often a decisive indication for continuous sedation for these patients. A palliative care team was consulted less often for noncancer patients (OR=0.45; 95% CI: 0.21, 0.96). Also, preceding sedation, euthanasia was discussed less often with noncancer patients (OR=0.42; 95% CI: 0.24, 0.73), whereas their relatives more often initiated discussion about euthanasia than relatives of cancer patients (OR=3.75; 95% CI: 1.26, 11.20). The practice of continuous palliative sedation in patients dying of cancer differs from patients dying of other diseases. These differences seem to be related to the less predictable course of noncancer diseases, which may reduce physicians' awareness of the imminence of death. Increased attention to noncancer diseases in palliative care practice and research is, therefore, crucial as is more attention to the potential benefits of palliative care consultation. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
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Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai
The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.
Jayard, S Stephen; Irudayadason, Nishant A; Davis, J Charles
Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients with incurable and terminal illnesses. This is where palliative care plays a vital role. Palliative care has been growing faster in the world of medicine since its emergence as a specialty in the last decade. Palliative care helps to reduce physical pain while affirming the aspect of human suffering and dying as a normal process. The goal of palliative care is to improve the quality of life both of the patient and the family. Palliative care resonates with the healing ministry of Christianity that affirms the sanctity and dignity of human life from the moment of conception to natural death. Christianity is convinced that patients at the very end of their lives, with all their ailments and agonies, are still people who have been created in the image and likeness of God. The human person is always precious, even when marked by age and sickness. This is one of the basic convictions that motivate Christians to take care of the sick and the dying. Palliative care is a great opportunity for Christians to manifest God's unfailing love for the terminally ill and the dying.
Caraceni, Augusto; Speranza, Raffaella; Spoldi, Elio; Ambroset, Cristina Sonia; Canestrari, Stefano; Marinari, Mauro; Marzi, Anna Maria; Orsi, Luciano; Piva, Laura; Rocchi, Mirta; Valenti, Danila; Zeppetella, Gianluigi; Zucco, Furio; Raimondi, Alessandra; Matos, Leonor Vasconcelos; Brunelli, Cinzia
Few studies regarding palliative sedation (PS) have been carried out in home care (HC) setting. A comparison of PS rate and practices between hospice (HS) and HC is also lacking. Comparing HC and HS settings for PS rate, patient clinical characteristics before and during PS, decision-making process, and clinical aspects of PS. About 38 HC/HS services in Italy participated in a multicenter observational longitudinal study. Consecutive adult cancer patients followed till death during a four-month period and undergoing PS were eligible. Symptom control and level of consciousness were registered every eight hours to death. About 4276 patients were screened, 2894 followed till death, and 531 (18%) underwent PS. PS rate was 15% in HC and 21% in HS (P Palliative Medicine. Published by Elsevier Inc. All rights reserved.
van Gurp, J.; van Selm, M.; van Leeuwen, E.; Vissers, K.; Hasselaar, J.
Background: Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual
Worster, Brooke; Swartz, Kristine
With the emergence of telemedicine as a routine form of care in various venues, the opportunities to use technology to care for the most vulnerable, most ill cancer patients are extremely appealing. Increasingly, evidence supports early integration of palliative care with standard oncologic care, supported by recent NCCN guidelines to increase and improve access to palliative care. This review looks at the use of telemedicine to expand access to palliative care as well as provide better care for patients and families where travel is difficult, if not impossible. When telemedicine has been used, often in Europe, for palliative care, the results show improvements in symptom management, comfort with care as well as patient and family satisfaction. One barrier to use of telemedicine is the concerns with technology and technology-related complications in population that is often elderly, frail and not always comfortable with non-face-to-face physician care. There remain significant opportunities to explore this intersection of supportive care and telemedicine.
Full Text Available Introduction Cancer-related pain (CRP and its treatments are common and the scariest problems that patients with cancer fear and negatively affect their quality of life. Despite medical intervention, the pain of cancer still remains a clinical problem. Thus, the use of complementary medicine methods such as massage therapy is essential to control pain in the patients. Methodology It was a review type study limited to national and international studies from 1995 to 2015. Searching processes were completed by electronic databases and search engines. Finally, based on inclusion and exclusion criteria as well as the elimination of duplicate studies, nine articles were selected for final review among which five were clinical trials and four were review or meta-analysis articles. Results In all five clinical trials, massage therapy reduced pain of patients with cancer, which reflects the positive effects of massage therapy in adult patients with cancer. In addition, although various methods of massage therapy were employed, with short-term and long-term periods, it still had a positive impact. Meanwhile, four review or meta-analysis studies while different in the year of study, inclusion and exclusion criteria, manifested that the results of massage therapy was an effective non-pharmacological pain control in patients with cancer. Conclusions Finally, it can be concluded that massage therapy is an effective non-pharmacological way to control pain in adult patients with cancer. Furthermore, studies in Iran on the effects of massage therapy on pain in patients with cancer are limited and much more research is needed in this area.
Hoang, Ba X; Le, Bao T; Tran, Hau D; Hoang, Cuong; Tran, Hung Q; Tran, Dao M; Pham, Cu Q; Pham, Tuan D; Ha, Trung V; Bui, Nga T; Shaw, D Graeme
Prostate cancer (adenocarcinoma of the prostate) is the most widespread cancer in men. It causes significant suffering and mortality due to metastatic disease. The main therapy for metastatic prostate cancer (MPC) includes androgen manipulation, chemotherapy, and radiotherapy and/or radioisotopes. However, these therapeutic approaches are considered palliative at this stage, and their significant side effects can cause further decline in patients' quality of life and increase non-cancer-related morbidity/mortality. In this study, the authors have used the infusion of dimethyl sulfoxide-sodium bicarbonate (DMSO-SB) to treat 18 patients with MPC. The 90-day follow-up of the patients having undergone the proposed therapeutic regimen showed significant improvement in clinical symptoms, blood and biochemistry tests, and quality of life. There were no major side effects from the treatment. In searching for new and better methods for palliative treatment and pain relief, this study strongly suggested therapy with DMSO-SB infusions could provide a rational alternative to conventional treatment for patients with MPC.
This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.
Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare
We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said 'in the middle of difficulty lies opportunity' and this sentiment could not be more relevant to the development of palliative care programmes. Through advocacy, policy, and staunch commitment to compassion, Rwandan healthcare workers are proving how palliative care can be successfully integrated into a healthcare system. As a global healthcare community, we should be asking what opportunities exist to do this across the African continent. Champions of palliative care have a chance to forge lasting collaborations between international experts and African healthcare workers. This global network could not only advocate for palliative care programmes but it would also help to create a culture where palliative care is viewed as a necessary part of all healthcare systems.
Gielen, Joris; Van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert
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 pa...
Wiskar, Katie J; Celi, Leo Anthony; McDermid, Robert C; Walley, Keith R; Russell, James A; Boyd, John H; Rush, Barret
Palliative care is recommended for advanced heart failure (HF) by several major societies, though prior studies indicate that it is underutilized. To investigate patterns of palliative care referral for patients admitted with HF exacerbations, as well as to examine patient and hospital factors associated with different rates of palliative care referral. Retrospective nationwide cohort analysis utilizing the National Inpatient Sample from 2006 to 2012. Patients referred to palliative care were compared to those who were not. Patients ≥18 years of age with a primary diagnosis of HF requiring mechanical ventilation (MV) were included. A cohort of non-HF patients with metastatic cancer was created for temporal comparison. Between 2006 and 2012, 74 824 patients underwent MV for HF. A referral to palliative care was made in 2903 (3.9%) patients. The rate of referral for palliative care in HF increased from 0.8% in 2006 to 6.4% in 2012 ( P care referral in patients with cancer increased from 2.9% in 2006 to 11.9% in 2012 ( P care ( P care. The use of palliative care for patients with advanced HF increased during the study period; however, palliative care remains underutilized in this setting. Patient factors such as race and SES affect access to palliative care.
Kristanti, Martina Sinta; Setiyarini, Sri; Effendy, Christantie
Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031). Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of
Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R Sean; von Gunten, Charles F
Palliative and end-of-life care is changing in the United States. This dynamic field is improving care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Methods of integrating current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. Although compilation of evidence for the importance of palliative care specialities is in its initial stages, national research grants have provided support to build the knowledge necessary for appropriate palliative care. Opportunities are available to clinicians for understanding and applying appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. (c) 2009 American Cancer Society, Inc.
Bétrémieux, P; Mannoni, C
The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Midorikawa, Yasuhiko; Iiduka, Masashi
The problems we have identified to overcome for a betterment of home palliative care were as follows:(1) Staffs' low level of knowledge and a lack of interest in home care, (2) Lack of cooperation between hospital and clinic, (3) Hard to keep the medical and caregiver staffs employed in the home care settings and a technical training is behind, (4) Insufficient cooperative networks for elderly care and welfare in the region, and (5) Misunderstanding of home palliative care by patient, family and people in the region. It is important to solve these problems one by one for a betterment of home palliative care. In this paper, we reported these problems through actual activities of our hospital and Iwaki city, and we propose to deal with them.
Golden, Adam G; Antoni, Charles; Gammonley, Denise
We describe the development and implementation of a home-based palliative care consult service for Veterans with advanced illness. A retrospective chart review was performed on 73 Veterans who received a home-based palliative care consult. Nearly one-third were 80 years of age or older, and nearly one-third had a palliative diagnosis of cancer. The most common interventions of the consult team included discussion of advance directives, completion of a "do not resuscitate" form, reduction/stoppage of at least 1 medication, explanation of diagnosis, referral to home-based primary care program, referral to hospice, and assessment/support for caregiver stress. The home-based consult service was therefore able to address clinical and psychosocial issues that can demonstrate a direct benefit to Veterans, families, and referring clinicians. © The Author(s) 2015.
Weissman, David E; Morrison, R Sean; Meier, Diane E
Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.
von Plessen, Christian; Aslaksen, Aslak
and energy in organisational aspects of care that could be better used in direct interaction with patients. DESIGN: Quality improvement study using direct observation and run and flow charts, and focus group meetings with patients and families regarding perceptions of the clinic and with staff regarding...
Kassianos, Angelos P; Ioannou, Myria; Koutsantoni, Marianna; Charalambous, Haris
Specialized palliative care (SPC) is currently underutilized or provided late in cancer care. The aim of this systematic review and meta-analysis is to critically evaluate the impact of SPC on patients' health-related quality of life (HRQoL). Five databases were searched through June 2016. Randomized controlled trials (RCTs) and prospective studies using a pre- and post- assessment of HRQoL were included. The PRISMA reporting statement was followed. Criteria from available checklists were used to evaluate the studies' quality. A meta-analysis followed using random-effect models separately for RCTs and non-RCTs. Eleven studies including five RCTs and 2939 cancer patients published between 2001 and 2014 were identified. There was improved HRQoL in patients with cancer following SPC especially in symptoms like pain, nausea, and fatigue as well as improvement of physical and psychological functioning. Less or no improvements were observed in social and spiritual domains. In general, studies of inpatients showed a larger benefit from SPC than studies of outpatients whereas patients' age and treatment duration did not moderate the impact of SPC. Methodological shortcomings of included studies include high attrition rates, low precision, and power and poor reporting of control procedures. The methodological problems and publication bias call for higher-quality studies to be designed, funded, and published. However, there is a clear message that SPC is multi-disciplinary and aims at palliation of symptoms and burden in line with current recommendations.
Claessens, Patricia; Menten, Johan; Schotsmans, Paul; Broeckaert, Bert
Palliative sedation remains a much debated and controversial issue. The limited literature on the topic often fails to answer ethical questions concerning this practice. The aim of this study was to describe the characteristics of patients who are being sedated for refractory symptoms in palliative care units (PCUs) from the time of admission until the day of death. A prospective, longitudinal, descriptive design was used to assess data in eight PCUs. The total sample consisted of 266 patients. Information on demographics, medication, food and fluid intake, decision making, level of consciousness, and symptom experience were gathered by nurses and researchers three times a week. If patients received palliative sedation, extra information was gathered. Of all included patients (n=266), 7.5% received palliative sedation. Sedation started, on average, 2.5 days before death and for half of these patients, the form of sedation changed over time. At the start of sedation, patients were in the end stage of their illness and needed total care. Patients were fully conscious and had very limited oral food or fluid intake. Only three patients received artificial fluids at the start of sedation. Patients reported, on average, two refractory symptoms, the most important ones being pain, fatigue, depression, drowsiness, and loss of feeling of well-being. In all cases, the patient gave consent to start palliative sedation because of increased suffering. This study revealed that palliative sedation is only administered in exceptional cases where refractory suffering is evident and for those patients who are close to the ends of their lives. Moreover, this study supports the argument that palliative sedation has no life-shortening effect. Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Sano, Motoko; Fushimi, Kiyohide
The administration of chemotherapy at the end of life is considered an aggressive life-prolonging treatment. The use of unnecessarily aggressive therapy in elderly patients at the end of life is an important health-care concern. To explore the impact of palliative care consultation (PCC) on chemotherapy use in geriatric oncology inpatients in Japan by analyzing data from a national database. We conducted a multicenter cohort study of patients aged ≥65 years, registered in the Japan National Administrative Healthcare Database, who died with advanced (stage ≥3) lung, stomach, colorectal, liver, or breast cancer while hospitalized between April 2010 and March 2013. The relationship between PCC and chemotherapy use in the last 2 weeks of life was analyzed using χ 2 and logistic regression analyses. We included 26 012 patients in this analysis. The mean age was 75.74 ± 6.40 years, 68.1% were men, 81.8% had recurrent cancer, 29.5% had lung cancer, and 29.5% had stomach cancer. Of these, 3134 (12%) received PCC. Among individuals who received PCC, chemotherapy was administered to 46 patients (1.5%) and was not administered to 3088 patients (98.5%). Among those not receiving PCC, chemotherapy was administered to 909 patients (4%) and was not administered to the remaining 21 978 patients (96%; odds ratio [OR], 0.35; 95% confidence interval, 0.26-0.48). The OR of chemotherapy use was higher in men, young-old, and patients with primary cancer. Palliative care consultation was associated with less chemotherapy use in elderly Japanese patients with cancer who died in the hospital setting.
Spaulding, Aaron; Harrison, Debra A; Harrison, Jeffrey P
Palliative care services are becoming more prevalent in the United States as greater portions of the population are requiring end-of-life services. Furthermore, recent policy changes and service foci have promoted more continuity and encompassing care. This study evaluates characteristics that distinguish hospitals with a palliative care program from hospitals without such a program in order to better define the markets and environments that promote the creation and usage of these programs. This study demonstrates that palliative care programs are more likely in communities with favorable economic factors and higher Medicare populations. Large hospitals with high occupancy rates and a high case mix index use palliative care programs to better meet patient needs and improve hospital efficiency. Managerial, nursing, and policy implications are discussed relating to further usage and implementation of palliative care programs.
Kapoor, Neha; Naufahu, Jane; Tewfik, Sundus; Bhatnagar, Sushma; Garg, Rakesh; Tewfik, Ihab
Advanced cancer patients with disease progression develop cachexia. Nevertheless, cancer patients at nutritional risk have shown improved body weight and quality of life with oral nutritional supplements. This was a randomized controlled trial in adult female cancer patients (n = 63) attending palliative clinics, with symptoms of cachexia. Eligible patients were randomly distributed into control (n = 33) and intervention (n = 30) groups. Both groups were provided with nutritional and physical activity counseling, but the intervention group received an additional 100 g of Improved Atta (IAtta) for 6 months daily consumption. This study was designed to assess the efficacy of IAtta (with counseling) in enhancing the health status of cachexic patients. Anthropometric measurements, dietary intake, physical activity level and quality of life parameters were assessed at baseline, after 3 months, and at the end of 6 months. Patients in the control group (n = 15) had significantly decreased body weight ( P = .003), mid-upper-arm circumference ( P = .002), and body fat ( P = .002) by the end of intervention. A trend of body weight gain in the intervention group (n = 17; P = .08) and significant increase of body fat ( P = .002) was observed; moreover, patients reported a significant improvement in fatigue ( P = .002) and appetite scores ( P = .006) under quality-of-life domains at the end of intervention. Embedding a nutrition-sensitive intervention ( IAtta ) within Indian palliative care therapy may improve quality of life and stabilize body weight in cancer cachexia patients.
The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public.
Akiyama, Miki; Hirai, Kei; Takebayashi, Toru; Morita, Tatsuya; Miyashita, Mitsunori; Takeuchi, Ayano; Yamagishi, Akemi; Kinoshita, Hiroya; Shirahige, Yutaka; Eguchi, Kenji
Prejudices against palliative care are a potential barrier to quality end-of-life care. There have been few large-scale community-wide interventions to distribute appropriate information about palliative care, and no studies have investigated their impact on cancer patients, their families, and the general public. Thus, we conducted a 3-year community intervention and evaluated the effects of distributing such information at the community level, and explored associations among levels of exposure, perceptions, knowledge, and the sense of security achieved. Over a period of 3 years, we provided flyers, booklets, posters, and public lectures about palliative care in four regions of Japan, and carried out pre- and post-intervention surveys with repeated cross-sectional samplings of cancer patients (pre 859, post 857), bereaved family members (1110, 1137), and the general public (3984, 1435). The levels of exposure to the provided information were measured by a multiple-choice questionnaire after intervention. Multiple logistic regression analyses were used to estimate multivariable-adjusted odds ratios (ORs) for perceptions of palliative care, knowledge about opioids, and sense of security among the exposure groups. Overall perceptions of palliative care, opioids, and receiving care at home improved significantly among the general public and families, but not among the patients at the community level. However, multiple regression revealed that patients of extensive exposure category had significantly more positive perceptions of palliative care to those of non-exposure category (p = 0.02). The sense of security regarding cancer care of all patients, family members, and the general public improved. Among others, the respondents who reported extensive exposure in the general public and family members scored significantly higher sense of security. Our findings indicate that providing palliative care information via small media and lectures in the community is
D'Ambruoso, Sarah F; Coscarelli, Anne; Hurvitz, Sara; Wenger, Neil; Coniglio, David; Donaldson, Dusty; Pietras, Christopher; Walling, Anne M
Our case describes the efforts of team members drawn from oncology, palliative care, supportive care, and primary care to assist a woman with advanced cancer in accepting care for her psychosocial distress, integrating prognostic information so that she could share in decisions about treatment planning, involving family in her care, and ultimately transitioning to hospice. Team members in our setting included a medical oncologist, oncology nurse practitioner, palliative care nurse practitioner, oncology social worker, and primary care physician. The core members were the patient and her sister. Our team grew organically as a result of patient need and, in doing so, operationalized an explicitly shared understanding of care priorities. We refer to this shared understanding as a shared mental model for care delivery, which enabled our team to jointly set priorities for care through a series of warm handoffs enabled by the team's close proximity within the same clinic. When care providers outside our integrated team became involved in the case, significant communication gaps exposed the difficulty in extending our shared mental model outside the integrated team framework, leading to inefficiencies in care. Integration of this shared understanding for care and close proximity of team members proved to be key components in facilitating treatment of our patient's burdensome cancer-related distress so that she could more effectively participate in treatment decision making that reflected her goals of care.
Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the \\'policy analysis triangle\\' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation.
Bernatchez, Marie Solange; Savard, Josée; Savard, Marie-Hélène; Aubin, Michèle
High rates of sleep-wake difficulties have been found in patients with cancer receiving palliative care. Pharmacotherapy is the most frequently used treatment option to manage these difficulties despite numerous adverse effects and the absence of empirical evidence of its efficacy and innocuity in palliative care. This pilot study aimed to assess the feasibility and acceptability of a cognitive-behavioral and environmental intervention (CBT-E) to improve insomnia and hypersomnolence in patients with a poor functioning level and to collect preliminary data on its effects. Six patients with cancer receiving palliative care (Eastern Cooperative Oncology Group score 2-3), who had insomnia and/or hypersomnolence, received 1 CBT-E individual session at home. They applied the strategies for 3 weeks. Patients completed the Insomnia Severity Index, the Epworth Sleepiness Scale, a daily sleep diary, and a 24-hour actigraphic recording (7 days) at pretreatment and posttreatment, in addition to a semistructured interview (posttreatment). Participants found strategies easy to apply most of the time, and none was rated as impossible to use because of their health condition. However, their adherence and satisfaction toward CBT-E were highly variable. Results on the effects of CBT-E were heterogeneous, but improvements were observed in patients with a persistent insomnia disorder. The CBT-E protocol tested among this highly selected sample was fairly well received and suggested positive outcomes in some patients, particularly those with an insomnia complaint alone. Efforts should be pursued to adapt CBT-E and develop other nonpharmacological interventions, in order to provide an alternative to pharmacotherapy for sleep-wake difficulties in this population.
Hepgul, N.; Gao, W.; Evans, C.J.; Jackson, D.; Vliet, L.M. van; Byrne, A.; Crosby, V.; Groves, K.E.; Lindsay, F.; Higginson, I.J.
Objectives: Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results
Alsirafy, Samy A; Galal, Khaled M; Abou-Elela, Enas N; Ibrahim, Noha Y; Farag, Dina E; Hammad, Ahmed M
One of the barriers to cancer pain control and palliative care (PC) development is the misconception that the use of opioids may hasten death. This concern is exaggerated when higher doses of opioids are used at the end-of-life. The aim of this study was to investigate the relationship between survival and the dose of opioids used at the end-of-life of patients with advanced cancer in an Egyptian PC setting. Retrospective review of the medical records of 123 patients with advanced cancer managed in an Egyptian cancer center-based palliative medicine unit (PMU). Patients were classified according to the last prescribed regular opioid dose expressed in milligrams of oral morphine equivalent (OME) per day (mg OME/24 h) into three groups: no opioid or low-dose group (PMU to death. The median age of patients was 53 years, breast cancer was the most common diagnosis (18%) and the majority (68%) died at home. Opioids were prescribed for pain control in 94% of patients and were prescribed on regular basis in 89%. The mean last prescribed opioid dose for the whole group of patients was 167 (±170) mg OME/24 h and it was highest among patients with pleural mesothelioma [245 (±258) mg OME/24 h]. The last prescription included no opioids or low-dose opioids in 57 (46%) patients, intermediate-dose in 42 (34%) and high-dose in 24 (20%). The estimated median survival was 45 days for the no opioid/low-dose group, 75 days for the intermediate-dose group and 153 days for the high-dose group (P=0.031). The results suggest that the dose of opioids has no detrimental impact on the survival of patients with advanced cancer in an Egyptian PC setting. Further research is needed to overcome barriers to cancer pain control especially in settings with inadequate cancer pain control.
Séfora Gomez Portela
Full Text Available This research aimed at understanding and reflecting on the perceptions of occupational therapists regarding the implementation of palliative care in home care. This is an exploratory, qualitative study, through semi-structured interviews, conducted in the second semester of 2012 with eight occupational therapists with experience in palliative care in the city of São Paulo. Content analysis identified four themes: characterization and professional trajectory in the field, understanding the concepts of palliative care, home care and palliative care, and occupational therapy and palliative care in home care. The results suggest that the role of the occupational therapist in this field has taken place at different levels of health care, being addressed to people with varying needs. The use of the concept of palliative care by the interviewees exceeds the notion of end of life, following the changes in the epidemiological transition. They understand that professional services follow the trend of national palliative care services with focus on specialized levels, but manifest the importance of its implementation in primary and home care. Among the barriers to practice, they identified the complexity of “being at home “, peculiarities of palliative care with high cost demands, lack of infrastructure and implementation of the current policy. Professional training and scientific roduction in the area were viewed as inadequate, although they identified a call for change. The interviewees recognized palliative care in home care as a strong professional field, but one still requiring study and discussions regarding its limits and conditions of implementation, especially in the Unified Health System.
Kennedy Sheldon, Lisa; Dahlin, Constance; Maingi, Shail; Sanchez, Jose
Since 2011, oncology nurses and physicians in the United States have been volunteering in Honduras with the International Cancer Corps (ICC), organized by the American Society of Clinical Oncology (ASCO), in partnership with Health Volunteers Overseas (HVO). In this article, the authors will summarize the work of the ASCO/HVO ICC teams that developed educational programs with local partners to improve cancer and palliative care in Honduras.
Full Text Available Background: Palliative care programs are rapidly evolving for patients with life-threatening illnesses. Increased and earlier access for facilities is a subject of growing importance in health services, policy, and research. Aim: This study was conducted to explain stakeholders' perceptions of the factors affecting the design of such a palliative care system and its policy analysis. Methodology: Semi-structured in-depth interviews conducted following purposive sampling of the participants. Twenty-two participants were included in the study. The interviews were analyzed using qualitative-directed content analysis based on "policy analysis triangle" framework. Results: The findings showed the impact of four categories, namely context (political, social, and structural feasibility, content (target setting, process (attracting stakeholder participation, the standardization of care, and education management, and actors (the Ministry of Health and Medical Education, health-care providers, and volunteers in the analysis of the palliative care policies of Iran. Conclusion: In the past 6 years, attention to palliative care has increased significantly as a result of the National Cancer Research Network with the support of the Ministry of Health. The success of health system plan requires great attention to its aspects of social, political, and executive feasibility. Careful management by policymakers of different stakeholders is vital to ensure support for any national plan, but this is challenging to achieve.
Full Text Available Abstract Chronic obstructive pulmonary disease (COPD is a major cause of disability, morbidity and mortality in old age. Patients with advanced stage COPD are most likely to be admitted three to four times per year with acute exacerbations of COPD (AECOPD which are costly to manage. The adverse events of AECOPD are associated with poor quality of life, severe physical disability, loneliness, and depression and anxiety symptoms. Currently there is a lack of palliative care provision for patients with advanced stage COPD compared with cancer patients despite having poor prognosis, intolerable dyspnoea, lower levels of self efficacy, greater disability, poor quality of life and higher levels of anxiety and depression. These symptoms affect patients' quality of life and can be a source of concern for family and carers as most patients are likely to be housebound and may be in need of continuous support and care. Evidence of palliative care provision for cancer patients indicate that it improves quality of life and reduces health care costs. The reasons why COPD patients do not receive palliative care are complex. This partly may relate to prognostic accuracy of patients' survival which poses a challenge for healthcare professionals, including general practitioners for patients with advanced stage COPD, as they are less likely to engage in end-of-life care planning in contrast with terminal disease like cancer. Furthermore there is a lack of resources which constraints for the wider availability of the palliative care programmes in the health care system. Potential barriers may include unwillingness of patients to discuss advance care planning and end-of-life care with their general practitioners, lack of time, increased workload, and fear of uncertainty of the information to provide about the prognosis of the disease and also lack of appropriate tools to guide general practitioners when to refer patients for palliative care. COPD is a chronic
Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith
Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.
Balkin, Emily M; Thompson, Daria; Colson, K Ellicott; Lam, Catherine G; Matthay, Katherine K
Studies have shown that children with cancer globally lack access to palliative care. Little is known regarding physicians' perceptions of palliative care, treatment access, and self-reported competence in providing palliative care. Members of the Global Neuroblastoma Network (online tumor board) were surveyed. Eighty-three respondents met inclusion criteria; 53 (64%) completed the survey. Most respondents trained in high-income countries (HIC) but practice in low- and middle-income countries (LMIC), and care for more than five patients with neuroblastoma annually. WHO Essential Medicines in palliative care varied in availability, with incomplete access across LMIC centers. Nonpharmacologic therapies were inconsistently available. Contrary to international definitions, 17% of respondents inappropriately considered palliative care as that initiated only after curative therapy is stopped. Mean physician competence composite score (Likert scale 1-5, 5 = very competent) in providing symptomatic relief and palliative care across phases of care was 2.93 (95% CI 2.71-3.22). Physicians reported significantly greater competence in symptom management during cure-directed therapy than during end-of-life (P = 0.02) or when patients are actively dying (P = 0.007). Practicing in HIC, prior palliative care training, having access to radiotherapy, and not having to turn patients away due to bed shortages were significantly predictive of perceived competence in providing palliative care at end of life. An international sample identified gaps in treatment and palliative care service availability, in understanding the definition of palliative care, and in self-reported competence in providing palliative care. Increased perceived competence was associated with training, which supports the need for increased palliative care education and advocacy, especially in LMIC. © 2016 Wiley Periodicals, Inc.
Full Text Available Background. Cancer patients using cannabis report better influence from the plant extract than from synthetic products. However, almost all the research conducted to date has been performed with synthetic products. We followed patients with a medicinal cannabis license to evaluate the advantages and side effects of using cannabis by cancer patients. Methods. The study included two interviews based on questionnaires regarding symptoms and side effects, the first held on the day the license was issued and the second 6–8 weeks later. Cancer symptoms and cannabis side effects were documented on scales from 0 to 4 following the CTCAE. The distress thermometer was used also. Results. Of the 211 patients who had a first interview, only 131 had the second interview, 25 of whom stopped treatment after less than a week. All cancer or anticancer treatment-related symptoms showed significant improvement (P<0.001. No significant side effects except for memory lessening in patients with prolonged cannabis use (P=0.002 were noted. Conclusion. The positive effects of cannabis on various cancer-related symptoms are tempered by reliance on self-reporting for many of the variables. Although studies with a control group are missing, the improvement in symptoms should push the use of cannabis in palliative treatment of oncology patients.
Bar-Sela, Gil; Vorobeichik, Marina; Drawsheh, Saher; Omer, Anat; Goldberg, Victoria; Muller, Ella
Background. Cancer patients using cannabis report better influence from the plant extract than from synthetic products. However, almost all the research conducted to date has been performed with synthetic products. We followed patients with a medicinal cannabis license to evaluate the advantages and side effects of using cannabis by cancer patients. Methods. The study included two interviews based on questionnaires regarding symptoms and side effects, the first held on the day the license was issued and the second 6-8 weeks later. Cancer symptoms and cannabis side effects were documented on scales from 0 to 4 following the CTCAE. The distress thermometer was used also. Results. Of the 211 patients who had a first interview, only 131 had the second interview, 25 of whom stopped treatment after less than a week. All cancer or anticancer treatment-related symptoms showed significant improvement (P cannabis use (P = 0.002) were noted. Conclusion. The positive effects of cannabis on various cancer-related symptoms are tempered by reliance on self-reporting for many of the variables. Although studies with a control group are missing, the improvement in symptoms should push the use of cannabis in palliative treatment of oncology patients.
Ikenaga, M; Tsuneto, S
In the medical environment, information disclosure to patients and respect of autonomy have spread rapidly. Today, many terminally-ill cancer patients wish to spend as much time at home as possible. In such situations the patient who has been informed that curative treatments are no longer expected to be beneficial can now hope to receive home care and visiting care from hospice/palliative care services. The essential concepts of hospice/palliative care are symptom management, communication, family care and a multidisciplinary approach. These concepts are also important in the outpatient department. In particular, medical staff need to understand and utilize management strategies for common symptoms from which terminally-ill cancer patients suffer (ex. cancer pain, anorexia/fatigue, dyspnea, nausea/vomiting, constipation, hypercalcemia and psychological symptoms). They also need to know how to use continuous subcutaneous infusion for symptom management in the patients last few days. The present paper explains the clinical practices of hospice/palliative care in the outpatient department. Also discussed is support of individual lives so that maximum QOL is provided for patients kept at home.
López-Sierra, Héctor E; Rodríguez-Sánchez, Jesús
This is a literature review of the supportive roles of religion and spirituality (R/S) in end-of-life (EoL) and palliative care of patients with cancer in a culturally diverse context. This review examines 26 noteworthy articles published between August 2013 and August 2014 from five well supported databases. Current evidence shows that R/S evokes in patients the sources to find the necessary inner strengths, which includes perspective thinking, rituals for transcending immediate physical condition and modalities of coping with their oncological illnesses. R/S are not a monolithically experience for they always manifest themselves in diverse cultural settings. As such, R/S provide the individual and their families with a practical context and social memory, which includes traditions and social family practices for maintaining meaning and well-being. Nonetheless, although various dimensions of R/S show a link between cancer risk factors and well being in cancer patients, more specific dimensions of R/S need to be studied taking into account the individuals' particular religious and cultural contexts, so that R/S variables within that context can provide a greater integrative structure for understanding and to move the field forward. Behavioral, cognitive and psychosocial scientists have taken a more in-depth look at the claims made in the past, suggesting that a relationship between R/S, cultural diversity and health exists. Case in point are the studies on EoL care, which have progressively considered the role of cultural, religion and spiritual diversity in the care of patients with oncological terminal illnesses. Beyond these facts, this review also shows that EoL supportive and palliative care providers could further enhance their practical interventions by being sensitive and supportive of cultural diversity. http://links.lww.com/COSPC/A10
Verpoort, Charlotte; Gastmans, Chris; Dierckx de Casterlé, Bernadette
In debates on euthanasia legalization in Belgium, the voices of nurses were scarcely heard. Yet studies have shown that nurses are involved in the caring process surrounding euthanasia. Consequently, they are in a position to offer valuable ideas about this problem. For this reason, the views of these nurses are important because of their palliative expertise and their daily confrontation with dying patients. The aim of this paper is to report a study of the views of palliative care nurses about euthanasia. A grounded theory approach was chosen, and interviews were carried out with a convenience sample of 12 palliative care nurses in Flanders (Belgium). The data were collected between December 2001 and April 2002. The majority of the nurses were not a priori for or against euthanasia, and their views were largely dependent on the situation. What counted was the degree of suffering and available palliative options. Depending on the situation, we noted both resistance and acceptance towards euthanasia. The underlying arguments for resistance included respect for life and belief in the capabilities of palliative care; arguments underlying acceptance included the quality of life and respect for patient autonomy. The nurses commented that working in palliative care had a considerable influence on one's opinion about euthanasia. In light of the worldwide debate on euthanasia, it is essential to know how nurses, who are confronted with terminally ill patients every day, think about it. Knowledge of these views can also contribute to a realistic and qualified view on euthanasia itself. This can be enlightening to the personal views of caregivers working in a diverse range of care settings.
Lucette, A; Brédart, A; Vivat, B; Young, T
Spiritual well-being is increasingly recognised as an important aspect of patients' quality of life when living with a potentially life-limiting illness such as cancer. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group is developing a measure for assessing spiritual well-being cross-culturally for people receiving palliative care for cancer. The pilot-testing phase of the study explored potential problems related to the content and administration of a provisional version of this measure. The French version was pilot-tested with 12 patients in a palliative and supportive day care unit in Paris. Participants were asked to complete the measure and the EORTC QLQ-C15-PAL before being interviewed about their responses. The administration of the measure enabled participants to express the difficulties and existential concerns they experienced. The items were not considered intrusive, despite the sensitive topic of the measure. This article considers difficulties with items pertaining to 'religion' and 'spirituality' in the context of French culture. Overall, this measure appears to enhance holistic care, by providing caregivers with a means of broaching spirituality issues, a topic otherwise difficult to discuss in the context of palliative care. © 2013 John Wiley & Sons Ltd.
Lentz, Judy C
Although the specialty of palliative nursing and palliative care continues to grow in hospital and outpatient settings, a paucity of home-based palliative services remains. This article discusses a new paradigm of faith-based palliative care ministry using faith community nurses (FCNs). Under the leadership of a palliative care doula (a nurse expert in palliative care), nurses in the faith community can offer critical support to those with serious illness. Models such as this provide stimulating content for FCN practice and opportunity to broaden health ministry within faith communities.
Alonso-Babarro, Alberto; Varela-Cerdeira, Maria; Torres-Vigil, Isabel; Rodríguez-Barrientos, Ricardo; Bruera, Eduardo
Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home. We retrospectively reviewed the medical records of 370 patients who were followed by a palliative home care team. Twenty-nine of 245 patients (12%) who died at home had received palliative sedation. The mean age of the patients who received palliative sedation was 58 +/- 17 years, and the mean age of the patients who did not receive palliative sedation was 69 +/- 15 years (p = 0.002). No other differences were detected between patients who did or did not receive palliative sedation. The most common indications for palliative sedation were delirium (62%) and dyspnea (14%). Twenty-seven patients (93%) received midazolam for palliative sedation (final mean dose of 74 mg), and two (7%) received levomepromazine (final mean dose of 125 mg). The mean time between palliative sedation initiation and time of death was 2.6 days. In 13 of the cases (45%), the palliative sedation decision was made with the patient and his or her family members, and in another 13 patients (45%), the palliative sedation decision was made only with the patient's family members. We concluded that palliative sedation may be used safely and efficaciously to treat dying cancer patients with refractory symptoms at home.
Hopprich, A; Günther, L D; Laufenberg-Feldmann, R; Reinholz, U; Weber, M
Palliative sedation (pS) is indicated in the presence of end-stage disease with treatment-refractory symptoms not tolerable for the patient. We investigated the practice of pS at a university palliative care unit. Before starting pS the following data were documented: indication and decision making, type of sedation, life expectancy evaluated by the physician using the palliative prognostic index. Over the time of pS communication skills, depth of sedation, relief in symptoms, substitution of fluid and nutrition and used medications were collected. During evaluation time 99 patients died. 34 patients received pS (34 %). All patients suffered from cancer. Indications for palliative sedation were: terminal restlessness (56 %), dyspnea (39 %), pain (32 %), psychological distress (15 %), agitated delir (9 %), vomiting (3 %) and bleeding (3 %) (multiple nominations possible). In 31 cases (91 %) nurses were included for decision making. In 33 cases continuous sedation were initiated immediately (median duration 27.5 hours). The most applied medication was midazolam (94 %), sometimes combined with neuroleptics (44 %) and propofol (15 %). 91 % of the patients additionally received opioids. Artificial fluid was substituted in two cases. Palliative sedation started in the median 27.5 hours before death. The final physician assessment revealed complete symptom relief in 12 patients (35 %), very strong symptom relief in 20 patients (59 %) and moderate symptom relief in 2 patients (6 %). pS was successfully used as last resort for relief of treatment-refractory symptoms in one third of decedents at the investigated palliative care unit. © Georg Thieme Verlag KG Stuttgart · New York.
This thesis describes hope in palliative care patients, their family members and their healthcare professionals. An interpretative synthesis of the literature (chapter 2) and a metaphor analysis of semi-structured interviews with palliative care professionals (chapter 3) highlight palliative care
De Simone, Gustavo G
Argentina is a large South American country with a high prevalence of chronic disease-related mortality and a clear need for implementation of palliative care. Primary concerns related to palliative care are cultural, socio-economic and educational. Increasing poverty, patients and families receiving inadequate information about their diagnosis or prognosis, drug availability and costs, and insufficient knowledge by health care providers are obstacles to palliative care. Palliative care programs are developing throughout the country and methods by which they are meeting their needs are described. Several Argentinean palliative care initiatives are described and the role of the Pallium Latinomérica training program is discussed.
The aim of this article is to demonstrate how a novel yet important tool can facilitate family involvement in person-centred care, despite geographical distance. The author presents a case study as an in-depth example of the use of Skype in the context of palliative care at home. Skype enhanced family surveillance and symptom management, augmented shared decision making, provided a space for virtual bedside vigil, and ultimately provided the rapport necessary for optimal end of life care.
Nguyen, Ly Thuy; Yates, Patsy; Osborne, Yvonne
To explore palliative care knowledge, attitudes and perceived self-competence of nurses working in oncology settings in Hanoi, Vietnam. The study employed a cross-sectional descriptive survey design. The self-administered questionnaires consisted of three validated instruments: the Expertise and Insight Test for Palliative Care, the Attitude Toward Care of the Dying Scale B and the Palliative Care Nursing Self Competence Scale. The sample consisted of 251 nurses caring for cancer patients in three oncology hospitals in Vietnam. The responses identified low scores in nurses' palliative care knowledge related to pain and other symptom management and psychological and spiritual aspects. Nurses' responses reflected discomfort in communicating about death and establishing therapeutic relationship with oncology patients who require palliative care. Additionally, nurses reported low scores in perceived self-competence when providing pain management and addressing social and spiritual domains of palliative care. The findings also revealed that nurses who had higher palliative care knowledge scores demonstrated attitudes which were more positive and expressed greater perceived self-competence. Nurses working in oncology wards need more education to develop their knowledge and skills of palliative care, especially in the areas of pain management, psychological and spiritual care, and communication.
M.Y.V. Homs (Marjolein)
textabstractThe prognosis of esophageal cancer is poor with a 5-year survival of 10-15%. In addition, over 50% of patients with esophageal cancer already have an inoperable disease at presentation. The majority of these patients require palliative treatment to relieve progressive dysphagia. Metal
Cassel, J Brian; Bowman, Brynn; Rogers, Maggie; Spragens, Lynn H; Meier, Diane E
Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.
Full Text Available Abstract Background The dissemination of palliative care for patients presenting complex chronic diseases at various stages has become an important matter of public health. A death census in Swiss long-term care facilities (LTC was set up with the aim of monitoring the frequency of selected indicators of palliative care. Methods The survey covered 150 LTC facilities (105 nursing homes and 45 home health services, each of which was asked to complete a questionnaire for every non-accidental death over a period of six months. The frequency of 4 selected indicators of palliative care (resort to a specialized palliative care service, the administration of opiates, use of any pain measurement scale or other symptom measurement scale was monitored in respect of the stages of care and analysed based on gender, age, medical condition and place of residence. Results Overall, 1200 deaths were reported, 29.1% of which were related to cancer. The frequencies of each indicator varied according to the type of LTC, mostly regarding the administration of opiate. It appeared that the access to palliative care remained associated with cancer, terminal care and partly with age, whereas gender and the presence of mental disorders had no effect on the indicators. In addition, the use of drugs was much more frequent than the other indicators. Conclusion The profile of patients with access to palliative care must become more diversified. Among other recommendations, equal access to opiates in nursing homes and in home health services, palliative care at an earlier stage and the systematic use of symptom management scales when resorting to opiates have to become of prime concern.
Senthil P Kumar
Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.
Assfalg, Volker; Hüser, Norbert; Michalski, Christoph; Gillen, Sonja; Kleeff, Jorg; Friess, Helmut
Palliative treatment concepts are considered in patients with non-curatively resectable and/or metastasized pancreatic cancer. However, patients without metastases, but presented with marginally resectable or locally non-resectable tumors should not be treated by a palliative therapeutic approach. These patients should be enrolled in neoadjuvant radiochemotherapy trials because a potentially curative resection can be achieved in approximately one-third of them after finishing treatment and restaging. Within the scope of best possible palliative care, resection of the primary cancer together with excision of metastases represents a therapeutic option to be contemplated in selected cases. Comprehensive palliative therapy is based on treatment of bile duct or duodenal obstruction for certain locally unresectable or metastasized advanced pancreatic cancer. However, endoscopic or percutaneous stenting procedures and surgical bypass provide safe and highly effective therapeutic alternatives. In case of operative drainage of the biliary tract (biliodigestive anastomosis), the prophylactic creation of a gastro-intestinal bypass (double bypass) is recommended. The decision to perform a surgical versus an endoscopic procedure for palliation depends to a great extent on the tumor stage and the estimated prognosis, and should be determined by an interdisciplinary team for each patient individually
Assfalg, Volker; Hüser, Norbert; Michalski, Christoph; Gillen, Sonja; Kleeff, Jorg; Friess, Helmut, E-mail: email@example.com [Department of Surgery, Klinikum rechts der Isar, Technische Universität München, Ismaningerstr. 22, D-81675 Munich (Germany)
Palliative treatment concepts are considered in patients with non-curatively resectable and/or metastasized pancreatic cancer. However, patients without metastases, but presented with marginally resectable or locally non-resectable tumors should not be treated by a palliative therapeutic approach. These patients should be enrolled in neoadjuvant radiochemotherapy trials because a potentially curative resection can be achieved in approximately one-third of them after finishing treatment and restaging. Within the scope of best possible palliative care, resection of the primary cancer together with excision of metastases represents a therapeutic option to be contemplated in selected cases. Comprehensive palliative therapy is based on treatment of bile duct or duodenal obstruction for certain locally unresectable or metastasized advanced pancreatic cancer. However, endoscopic or percutaneous stenting procedures and surgical bypass provide safe and highly effective therapeutic alternatives. In case of operative drainage of the biliary tract (biliodigestive anastomosis), the prophylactic creation of a gastro-intestinal bypass (double bypass) is recommended. The decision to perform a surgical versus an endoscopic procedure for palliation depends to a great extent on the tumor stage and the estimated prognosis, and should be determined by an interdisciplinary team for each patient individually.
Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)
Hermsen, M.A.; Have, H.A.M.J. ten
Working as a multidisciplinary or interdisciplinary team is an essential condition to provide good palliative care. This widespread assumption is based on the idea that teamwork makes it possible to address the various needs of the patient and family more effectively. This article is about teamwork
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Gupta, Vineeta; Woodman, Clare
This article describes a strategy to reduce the high levels of stress experienced by community nurses in a children's palliative care team. The development, use and effectiveness of a problem-solving team intervention are illustrated by direct quotations from the nurses themselves.
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Nakazawa, Yoko; Yamamoto, Ryo; Kato, Masashi; Miyashita, Mitsunori; Kizawa, Yoshiyuki; Morita, Tatsuya
Palliative care education for health care professionals is a key element in improving access to quality palliative care. The Palliative Care Emphasis Program on Symptom Management and Assessment for Continuous Medical Education (PEACE) was designed to provide educational opportunities for all physicians in Japan. As of 2015, 57,764 physicians had completed it. The objective of this study was to estimate the effects of the program. This study was an analysis of 2 nationwide observational studies from 2008 and 2015. We conducted 2 questionnaire surveys for representative samples of physicians. The measurements used were the Palliative Care Knowledge Test (range, 0-100) and the Palliative Care Difficulties Scale (range, 1-4). Comparisons were made with the unpaired Student t test and with a multivariate linear regression model using 2 cohorts and a propensity score-matched sample. This study analyzed a total of 48,487 physicians in 2008 and a total of 2720 physicians in 2015. Between 2008 and 2015, physicians' knowledge and difficulties significantly improved on the Palliative Care Knowledge Test with total scores of 68 and 78, respectively (P PEACE program had a higher knowledge score (74 vs 86; P PEACE program may have contributed to these improvements. Cancer 2018;124:626-35. © 2017 American Cancer Society. © 2017 American Cancer Society.
Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert
We wanted to assess Indian palliative-care nurses and physicians' attitudes toward pain control and palliative sedation. 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). 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. 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
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. PMID:21633619
Vernooy-Dassen, M.J.F.J.; Osse, B.H.P.; Schade, E.; Grol, R.P.T.M.
No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a
Freeman, Rachel; Luyirika, Emmanuel Bk; Namisango, Eve; Kiyange, Fatia
The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation's public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation.
Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R
Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R
While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.
Full Text Available Abstract 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
Major strides have been made in expanding the content of professional education in palliative care to include a focus on attitudes which nurture compassionate care as well as on knowledge and skills. However, accessing the emotional spheres--for instance the fear and helplessness of caregivers--remains a challenge. The inclusion of music therapy techniques as a teaching modality, with an emphasis on emotional experience and nonverbal expression, is suggested to address the latter and to enhance affective growth and learning.
Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert
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.
Masel, Eva K; Schur, Sophie; Watzke, Herbert H
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. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Biji M Sankaran
Full Text Available Aim: To report the prevalence and outcomes of pressure ulcers (PU seen in a cohort of cancer patients requiring home-based palliative care. Materials and Methods: All patients referred for home care were eligible for this prospective observational study, provided they were living within a distance of 35 km from the institute and gave informed consent. During each visit, caregivers were trained and educated for providing nursing care for the patient. Dressing material for PU care was provided to all patients free of cost and care methods were demonstrated. Factors influencing the occurrence and healing of PUs were analyzed using logistic regression. Duration for healing of PU was calculated using the Kaplan Meier method. P < 0.05 are taken as significant. Results: Twenty-one of 108 (19.4% enrolled patients had PU at the start of homecare services. None of the patients developed new PU during the course of home care. Complete healing of PU was seen in 9 (42.9% patients. The median duration for healing of PU was found to be 56 days. Median expenditure incurred in patients with PU was Rs. 2323.40 with a median daily expenditure of Rs. 77.56. Conclusions: The present model of homecare service delivery was found to be effective in the prevention and management of PUs. The high prevalence of PU in this cohort indicates a need for greater awareness for this complication. Clinical Trial Registry Number: CTRI/2014/03/004477
Real, Shirley; Cobbe, Sinead; Slattery, Sinead
Edema in palliative care patients is a common symptom, however, the research base for all aspects of its care is extremely poor. To evaluate a specialist palliative care edema service in order to report on the patient population referred, the types of edema encountered, and the causes of edema. Prior to study, three different edema types were described for evaluation: lymphedema, nonlymphatic edema, and a combination of the two. Retrospective chart evaluation was completed from August 2013 through January 2014. Patients with edema assessed by the specialist palliative care physiotherapy edema service. Sixty-three cases were included, comprising 10.5% of all new palliative care referrals during the study period. Ninety-two percent (n = 58) had a diagnosis of cancer and 57% (n = 36) were female. Age ranged from 45-97 years. The most common edema type was a mixed edema (46%, n = 29), followed by lymphedema (27%, n = 18) and nonlymphatic edema (16%, n = 10). Lymphorrhea occurred in 9.5% of cases. The most common reasons for edema, based on clinical opinion, were blocked lymphatics (33%) and dependency from immobility (27%). The most common site for edema was in the lower limbs (89%, n = 56). The time lapse from the last treatment to death ranged from 1-225 days. Having a mixed edema type or lymphorrhea was a relatively poor prognostic sign. This is the first study to describe in detail the occurrence of edema in palliative care patients. Edema may be present for many months prior to death making the search for effective treatments imperative.
Chong, LeeAi; Abdullah, Adina
The aim of this study was to explore the experience of community palliative care nurses providing home care to children. A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.
Nizard, Julien; Levesque, Amélie; Denis, Nathalie; de Chauvigny, Edwige; Lepeintre, Aurélie; Raoul, Sylvie; Labat, Jean-Jacques; Bulteau, Samuel; Maillard, Benoît; Buffenoir, Kevin; Potel, Gilles; Lefaucheur, Jean-Pascal; Nguyen, Jean Paul
Non-drug treatments should be systematically associated to the medical analgesic treatment during the terminal phase of cancer. Patient 1, a 23-year-old woman, presented an adenocarcinoma of the rectum, with liver and lung metastases. Pain was initially treated by oral morphine and a combination of pregabalin and amitriptyline. Ketamine and intrathecal administration of morphine were both ineffective. Patient 2, a 69-year-old woman, presented a cutaneous T-cell lymphoma. She was admitted to the palliative care unit with mixed pain related to cutaneous lymphomatous infiltration. World Health Organization (WHO) step 3 analgesics had not been tolerated. Both patients received five consecutive 20-min sessions of repetitive transcranial magnetic stimulation to the right motor cortex. Patient 1 experienced a marked improvement of her pain over the days following the first repetitive transcranial magnetic stimulation session. Medical treatment was able to be rapidly decreased by about 50%, which restored an almost normal level of consciousness and lucidity. Patient 2's pain was also markedly decreased over the days following these five consecutive sessions, and repetitive transcranial magnetic stimulation also appeared to have had a beneficial effect on the patient's anxiety and mood. In the context of palliative care of cancer patients experiencing refractory pain that is difficult to control by the usual treatments, motor cortex repetitive transcranial magnetic stimulation, due to its noninvasive nature, can be used as an adjuvant therapy to improve various components of pain, including the emotional components. By reducing the doses of analgesics, repetitive transcranial magnetic stimulation decreases the severity of their adverse effects and improves the patient's quality of life. © The Author(s) 2015.
Datta, Soumitra Shankar; Agrawal, Sanjit
e-learning resources need to be customised to the audience and learners to make them culturally relevant. The ' Palliative care e-learning resource for health care professionals in India' has been developed by the Karunashraya Hospice, Bengaluru in collaboration with the Cardiff Palliative Care Education Team, Wales to address the training needs of professionals in India. The resource, comprising over 20 modules, integrates psychological, social and medical care for patients requiring palliative care for cancer and other diseases. With increased internet usage, it would help in training a large number of professionals and volunteers in India who want to work in the field of palliative care.
As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.
As the spiritual care needs of patients and their loved ones have become an essential component of palliative care, clinicians are being challenged to develop new ways of addressing the spiritual issues that often arise in the palliative care setting. Recent research has given attention to the communication strategies that are effective with patients or their loved ones who report that they are seeking a miraculous physical healing. However, these strategies often assume a unilateral rather than collaborative view of divine intervention. Communication strategies that are effective with unilateral understandings of divine intervention may be contraindicated with those who hold to a collaborative view of divine intervention. Greater attention to language of human-divine interaction along with approaching faith healing as a third modality of treatment are explored as additional interventions.
Claessen, S.J.J.; Francke, A.L.; Sixma, H.J.; Veer, A.J.E. de; Deliens, L.
Context: A Consumer Quality Index (CQ-index) is a questionnaire assessing the actual care experiences and how important the recipient finds certain care aspects, as well as the priorities for improving quality. A CQ-index Palliative Care (CQ-index PC) for bereaved relatives was developed to measure
Mitchell, A. J.; Chan, M.; Bhatti, H.
Background Substantial uncertainty exists about prevalence of mood disorders in patients with cancer, including those in oncological, haematological, and palliative-care settings. We aimed to quantitatively summarise the prevalence of depression, anxiety, and adjustments disorders in these settin...... between palliative-care and non-palliative-care settings. Clinicians should remain vigilant for mood complications, not just depression....
Bickel, Kathleen E; McNiff, Kristen; Buss, Mary K; Kamal, Arif; Lupu, Dale; Abernethy, Amy P; Broder, Michael S; Shapiro, Charles L; Acheson, Anupama Kurup; Malin, Jennifer; Evans, Tracey; Krzyzanowska, Monika K
Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice. Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning (78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients appropriately. This statement describes the elements comprising high-quality primary palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find this information useful to inform operational changes and quality improvement efforts. Copyright © 2016 by American Society of Clinical Oncology.
de Haes, Hanneke; Koedoot, Nelleke
Patient centered palliative cancer care would imply, first, the introduction of psychosocial endpoints when evaluating treatment and making decisions. Second, patient control would have to be enhanced by information giving and increased decision involvement. We have indicated that paradoxes exist
Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K.; Van den Branden, Stef; Broeckaert, Bert
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, ...
Joris Gielen; Harmala Gupta; Ambika Rajvanshi; Sushma Bhatnagar; Seema Mishra; Arvind K Chaturvedi; Stef Van den Branden; Bert Broeckaert
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...
Mochamat; Cuhls, Henning; Marinova, Milka; Kaasa, Stein; Stieber, Christiane; Conrad, Rupert; Radbruch, Lukas; Mücke, Martin
We provide a systematic review to support the European Palliative Care Research Collaboration development of clinical guidelines for cancer patients suffering from cachexia. CENTRAL, MEDLINE, PsycINFO, ClinicalTrials.gov, and a selection of cancer journals have been searched up until 15 April 2016. The systematic literature research yielded 4214 publications with 21 of these included in the final evaluation. Regarding minerals, our search identified only one study examining the use of magnesium with no effect on weight loss. As far as vitamins are concerned, vitamin E in combination with omega-3 fatty acids displayed an effect on survival in a single study, vitamin D showed improvement of muscle weakness in prostate cancer patients, and vitamin C supplementation led to an improvement of various quality of life aspects in a sample with a variety of cancer diagnoses. For proteins, a combination therapy of β-hydroxy-β-methylbutyrate (HMB), arginine, and glutamine showed an increase in lean body mass after 4 weeks in a study of advanced solid tumour patients, whereas the same combination did not show a benefit on lean body mass in a large sample of advanced lung and other cancer patients after 8 weeks. L-carnitine led to an increase of body mass index and an increase in overall survival in advanced pancreatic cancer patients. Adverse effects of food supplementation were rare and showed mild intensity. There is not enough solid evidence for the use of minerals, vitamins, proteins, or other supplements in cancer. No serious adverse effects have been reported with dietary supplementation. © 2016 The Authors. Journal of Cachexia, Sarcopenia and Muscle published by John Wiley & Sons Ltd on behalf of Society on Sarcopenia, Cachexia and Wasting Disorders.
Ntizimira, Christian R; Nkurikiyimfura, Jean Luc; Mukeshimana, Olive; Ngizwenayo, Scholastique; Mukasahaha, Diane; Clancy, Clare
We are often asked what challenges Rwanda has faced in the development of palliative care and its integration into the healthcare system. In the past, patients have been barred from accessing strong analgesics to treat moderate to severe pain, but thanks to health initiatives, this is slowly changing. Rwanda is an example of a country where only a few years ago, access to morphine was almost impossible. Albert Einsten said ?in the middle of difficulty lies opportunity? and this sentiment coul...
Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith
Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication
Namasivayam, Pathma; O Connor, Margaret; Barnett, Tony; Lee, Susan; Peters, Louise
Palliative care in Malaysia developed in the 1990s to improve the quality of life of people with advanced cancer. Like many other countries, Malaysia faces its own challenges in providing palliative care to patients and their families. In Malaysian culture, families play a significant part in providing care to the dying. Connecting with families in patient care is therefore important. This paper reports a focused literature review evaluating studies on the care of the families of terminally ill people in palliative care environments in Malaysia. The search engines CINAHL, Medline, PsycINFO, and Google Scholar were searched for literature published from January 2000 to April 2010 relating to family care in palliative care environments. Due to a paucity of research on family care in Malaysia, the search was broadened to include relevant studies on family care internationally. Four themes were identified: delivering palliative care in Malaysia, communicating with families, crossing cultural boundaries, and the caring experience of nurses. The studies indicate the importance of the nurse-family interaction in providing optimal and culturally appropriate palliative care. This paper emphasizes the need for research into the nurse's role in family care and for developing a theory appropriate to the Malaysian culture and other countries with cultural diversity.
Whittall, Dawn; Lee, Susan; O'Connor, Margaret
To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment
Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana
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
Ridwelski, K; Meyer, F
Palliative treatment is often the only remaining option in the management of pancreatic carcinoma, but its efficacy is poor due to low tumor sensitivity and inadequate treatment protocols. There are several options of palliative treatment with antitumor or supportive intention. Classical end points of palliative treatment are survival, tumor response, and quality of life. A decade ago, palliative chemotherapy consisted mainly of 5-fluorouracil as the standard agent in combination with either other agents and/or radiotherapy. Only the new antineoplastic drug gemcitabine, which was introduced simultaneously with the definition of novel end points of chemotherapy such as clinical benefit, allowed to achieve some progress. However, while gemcitabine monotherapy appeared to be superior to 5-fluorouracil and improved important parameters of quality of life, it could not provide a significant improvement of survival. A novel concept, therefore, is to improve this beneficial cytostatic response in pancreatic carcinoma using a gemcitabine-based protocol by combining it with antineoplastic drugs such as taxanes or platin analogs. This strategy may have the potential to improve the outcome in palliative chemotherapy of pancreatic carcinoma patients with advanced tumor growth or metastases. Best supportive care in pancreatic cancer consists of the treatment of symptoms, such as pain, jaundice, duodenal obstruction, weight loss, exocrine pancreatic insufficiency, and tumor-associated depression. Copyright 2001 S. Karger AG, Basel
Xu, Melody J; Su, David; Deboer, Rebecca; Garcia, Michael; Tahir, Peggy; Anderson, Wendy; Kinderman, Anne; Braunstein, Steve; Sherertz, Tracy
Familiarity with principles of palliative care, supportive care, and palliative oncological treatment is essential for providers caring for cancer patients, though this may be challenging in global communities where resources are limited. Herein, we describe the scope of literature on palliative oncological care curricula for providers in resource-limited settings. A systematic literature review was conducted using PubMed, Embase, Cochrane Library, Web of Science, Cumulative Index to Nursing and Allied Health Literature, Med Ed Portal databases, and gray literature. All available prospective cohort studies, case reports, and narratives published up to July 2017 were eligible for review. Fourteen articles were identified and referenced palliative care education programs in Argentina, Uganda, Kenya, Australia, Germany, the USA, or multiple countries. The most common teaching strategy was lecture-based, followed by mentorship and experiential learning involving role play and simulation. Education topics included core principles of palliative care, pain and symptom management, and communication skills. Two programs included additional topics specific to the underserved or American Indian/Alaskan Native community. Only one program discussed supportive cancer care, and no program reported educational content on resource-stratified decision-making for palliative oncological treatment. Five programs reported positive participant satisfaction, and three programs described objective metrics of increased educational or research activity. There is scant literature on effective curricula for providers treating cancer patients in resource-limited settings. Emphasizing supportive cancer care and palliative oncologic treatments may help address gaps in education; increased outcome reporting may help define the impact of palliative care curriculum within resource-limited communities.
Kristanti, M.S.; Setiyarini, S.; Effendy, C.
BACKGROUND: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi
Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.
Full Text Available Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities.
This bsachelor thesis is devided into two parts, theoretical and practical. The work focuses on opinions of workers in palliative care on euthanasia. The theoretical part deals with the definition of palliative care, its goals and principles. Futhermore, it also introduced quality of palliative care in Czech Republic. Second chapter explains the term euthanasia and its forms. It also contains opinions of citizens of the Czech Republic on euthanasia. Third chapter is dedicated to terms such as...
Monteiro, Andreia Marlene da Silva
This report, performed in the context of the completion of the masters in Palliative Care, presents the activities and learning experiences that I have acquired during the months of training in the different settings of palliative care. This internship was performed at St Catherine’s Hospice (Inpatient unit, Day hospice and Community team) and with the National Health Service of East Surrey Hospital Specialist Palliative Care Team. Alongside the institutional involvement, internship activitie...
van Gurp, J.; van Selm, M.; Vissers, K.; van Leeuwen, E.; Hasselaar, J.
Objective The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with
Eva, Gail; Morgan, Deidre
Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services. A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.
van Laarhoven, Hanneke W. M.; Schilderman, Johannes; Bleijenberg, Gijs; Donders, Rogier; Vissers, Kris C.; Verhagen, Constans A. H. H. V. M.; Prins, Judith B.
Coping strategies may be important factors influencing quality of life (QOL), depression, and hopelessness. However, most studies on this issue were performed in patients still undergoing anticancer treatment. Unknown is which coping strategies are of importance for palliative-cancer patients who no
Laarhoven, H.W.M. van; Schilderman, J.; Bleijenberg, G.; Donders, R.; Vissers, K.C.P.; Verhagen, C.A.H.H.V.M.; Prins, J.B.
BACKGROUND: Coping strategies may be important factors influencing quality of life (QOL), depression, and hopelessness. However, most studies on this issue were performed in patients still undergoing anticancer treatment. Unknown is which coping strategies are of importance for palliative-cancer
Soelver, Lisbeth; Rydahl-Hansen, Susan; Oestergaard, Birte
Based on the research method grounded theory and semistructured patient interviews at home following hospitalization, the aim was to provide information on issues relating to the identification and alleviation of patients' physical and emotional problems, understood as continuity in palliative ca...
Full Text Available Of the approximately 80,000 new cases of all cancers detected every year in India, 10-15% are gynecological malignancies. As per population-based registries under the National Cancer Registry Program, the leading sites of cancer among women are the cervix uteri, breast, and oral cavity. About 50-60% of all cancers among women in India are mainly of the following four organs: cervix uteri, breast, corpus uteri, and ovaries. Over 70% of these women report for diagnostic and treatment services at an advanced stage of disease, resulting in poor survival and high mortality rates. Among all gynecological cancers, ovarian cancer is the deadliest one and, in 2/3 rd of the cases, is detected in an advanced stage. But, in India and in other developing countries, due to inadequate screening facilities for the preventable cancer cervix, this kills more women than any other cancer in females. Gynecology Oncologist as a sub-specialist has an immensely important role in curtailing the menace of gynecological malignancies by providing comprehensive preventive, curative, palliative and follow-up services, with the aim of assuring a good quality of life to women as a cornerstone of cancer management.
Recurrent Ovarian Epithelial Cancer; Recurrent Ovarian Germ Cell Tumor; Recurrent Pancreatic Cancer; Stage III Pancreatic Cancer; Stage IIIA Ovarian Epithelial Cancer; Stage IIIA Ovarian Germ Cell Tumor; Stage IIIB Ovarian Epithelial Cancer; Stage IIIB Ovarian Germ Cell Tumor; Stage IIIC Ovarian Epithelial Cancer; Stage IIIC Ovarian Germ Cell Tumor; Stage IV Ovarian Epithelial Cancer; Stage IV Ovarian Germ Cell Tumor; Stage IV Pancreatic Cancer
Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert
To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.
Ozaki, Akihiko; Tsubokura, Masaharu; Leppold, Claire; Sawano, Toyoaki; Tsukada, Manabu; Nemoto, Tsuyoshi; Kosugi, Kazuhiro; Nishikawa, Yoshitaka; Kato, Shigeaki; Ohira, Hiromichi
The primary setting of palliative care has shifted from inpatient care to patients' residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. The patient was diagnosed with stage IV breast cancer. The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home. Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients' end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population
... Pediatric Palliative Care Resources for You Follow us Pediatric Palliative Care Resources for You Dealing with a ... The National Institute of Nursing Research (NINR) offers pediatric palliative care resources to help you, your family, ...
Angela Maria Amaral Soares Abou Ali
Full Text Available In recent years elderly population is increasing substantially, about 650,000 per year, as well as the concept of unifamílies, ie, families consisting of a single person. In this paper, is proposed a reflection about health of elderly in Brazil, and the conditions of a chronic disease and its acute state - terminal. In the actual society, capitalist and capitalized, the individual is valued by his production, losing his value when acquires a disabling illnesses. There is a growing need for work, and each time there is less time and resources to manage the permanence of an elderly patient at home, or pay for a caregiver. This situation leads families to resort to hospitalization, which in turn makes the hospitals overcrowded with patients in this state, affecting both emergency care as the treatment of chronic patients. This fact occurs due to lack of hospital infrastructure, as well by the lack of units of the healthy system capable of providing palliative care. The questioning about the elderly who need palliative care, and reflection about the type of care dispended for this kind of patient, should be the focal point of professional's reflections, capable to lead him to a new way of thinking and, consequently, to inspire him to act in a new way.
M R Rajagopal
Full Text Available Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1 Creation of minimum National Standards for Palliative Care for India. (2 Development of a tool for self-evaluation of palliative care organizations. (3 Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57% palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.
Dellon, E P; Goggin, J; Chen, E; Sabadosa, K; Hempstead, S E; Faro, A; Homa, K
The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines. Copyright © 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
In recent years, palliative care and related organizations have increasingly adopted a stance of "studied neutrality" on the question of whether euthanasia should be legalized as a bona fide medical regimen in palliative care contexts. This stance, however, has attracted criticism from both opponents and proponents of euthanasia. Pro-euthanasia activists see the stance as an official position of indecision that is fundamentally disrespectful of a patient's right to "choose death" when life has become unbearable. Some palliative care constituents, in turn, are opposed to the stance, contending that it reflects an attitude of "going soft" on euthanasia and as weakening the political resistance that has hitherto been successful in preventing euthanasia from becoming more widely legalized. In this article, attention is given to examining critically the notion and possible unintended consequences of adopting a stance of studied neutrality on euthanasia in palliative care. It is argued that although palliative care and related organizations have an obvious stake in the outcome of the euthanasia debate, it is neither unreasonable nor inconsistent for such organizations to be unwilling to take a definitive stance on the issue. It is further contended that, given the long-standing tenets of palliative care, palliative care organizations have both a right and a responsibility to defend the integrity of the principles and practice of palliative care and to resist demands for euthanasia to be positioned either as an integral part or logical extension of palliative care. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Van Beek, Karen; Woitha, Kathrin; Ahmed, Nisar; Menten, Johan; Jaspers, Birgit; Engels, Yvonne; Ahmedzai, Sam H; Vissers, Kris; Hasselaar, Jeroen
According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access
José Elías García Sánchez
Full Text Available The worst misfortune that can befall an old, tormented and fearful boxing trainer is that the pupil he is training and of whom he is very fond should have a lesion as serious as a quadriplegia. This is the crux of the plot in Million Dollar Baby. A person who suffers a quadriplegia sees how most of her physical and sensorial abilities disappear and habitually suffers psychological disturbances requiring palliative medical care. Relatives are subjected to great stress and suffering. All these aspects are reflected, in general accurately, in the film.
Vayne-Bossert, P; Richard, E; Good, P; Sullivan, K; Hardy, J R
Integration of oncology and palliative care (PC) should be the standard model of care for patients with advanced cancer. An expert panel developed criteria that constitute integration. This study determined whether the PC service within this Health Service, which is considered to be fully "integrated", could be benchmarked against these criteria. A survey was undertaken to determine the perceived level of integration of oncology and palliative care by all health care professionals (HCPs) within our cancer centre. An objective determination of integration was obtained from chart reviews of deceased patients. Integration was defined as >70% of all respondents answered "agree" or "strongly agree" to each indicator and >70% of patient charts supported each criteria. Thirty-four HCPs participated in the survey (response rate 69%). Over 90% were aware of the outpatient PC clinic, interdisciplinary and consultation team, PC senior leadership, and the acceptance of concurrent anticancer therapy. None of the other criteria met the 70% agreement mark but many respondents lacked the necessary knowledge to respond. The chart review included 67 patients, 92% of whom were seen by the PC team prior to death. The median time from referral to death was 103 days (range 0-1347). The level of agreement across all criteria was below our predefined definition of integration. The integration criteria relating to service delivery are medically focused and do not lend themselves to interdisciplinary review. The objective criteria can be audited and serve both as a benchmark and a basis for improvement activities.
Minton, Mary E; Kerkvliet, Jennifer L; Mitchell, Amanda; Fahrenwald, Nancy L
Geographical disparities play a significant role in palliative and end-of-life care access. This study assessed availability of palliative and end of life (hospice) care in South Dakota. Grounded in a conceptual model of advance care planning, this assessment explored whether South Dakota health care facilities had contact persons for palliative care, hospice services, and advance directives; health care providers with specialized training in palliative and hospice care; and a process for advance directives and advance care planning. Trained research assistants conducted a brief telephone survey. Of 668 health care eligible facilities, 455 completed the survey for a response rate of 68 percent (455 out of 668). Over one-half of facilities had no specific contact person for palliative care, hospice services and advance directives. Nursing homes reported the highest percentage of contacts for palliative care, hospice services and advance directives. Despite a lack of a specific contact person, nearly 75 percent of facilities reported having a process in place for addressing advance directives with patients; slightly over one-half (53 percent) reported having a process in place for advance care planning. Of participating facilities, 80 percent had no staff members with palliative care training, and 73 percent identified lack of staff members with end-of-life care training. Palliative care training was most commonly reported among hospice/home health facilities (45 percent). The results of this study demonstrate a clear need for a health care and allied health care workforce with specialized training in palliative and end-of-life care.
Nottelmann, Lise; Groenvold, Mogens; Vejlgaard, Tove Bahn
BACKGROUND: The effect of early palliative care and rehabilitation on the quality of life of patients with advanced cancer has been only sparsely described and needs further investigation. In the present trial we combine elements of early, specialized palliative care with cancer rehabilitation...... in a 12-week individually tailored, palliative rehabilitation program initiated shortly after a diagnosis of advanced cancer. METHODS: This single center, randomized, controlled trial will include 300 patients with newly diagnosed advanced cancer recruited from the Department of Oncology, Vejle Hospital...... initiated shortly after an advanced cancer diagnosis. The study will contribute with evidence on the effectiveness of implementing early palliative care in standard oncology treatment and hopefully offer new knowledge and future directions as to the content of palliative rehabilitation programs. TRIAL...
Sandman, Lars; Molander, Ulla; Benkel, Inger
Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.
Bergenholtz, Heidi; Jarlbaek, Lene; Hølge-Hazelton, Bibi
: a quantitative study, in which three independent datasets were triangulated to study the organisation and evaluation of generalist palliative care, and a qualitative, ethnographic study exploring the culture of generalist palliative nursing care in medical departments. SETTING/PARTICIPANTS: A Danish regional...
Crul, B.J.P.; Weel, C. van
Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally
based palliative care (including paediatric palliative care) is available to patients in rural ... reported that one of the most distressing tasks a nurse has to carry out is telling any .... die, as a miracle (such as a cure) is presented as a possibility.
Aim. We aimed to assess the postgraduate palliative care distance education programme of the University of Cape Town (UCT) in terms of its perceived ability to influence palliative care delivery. Methods. A mixed-methods approach, consisting of two surveys using open-ended and multiple-choice options, was conducted ...
Introduction: There exists scanty literature on the awareness of Nigerians towards palliative care. This study was conducted to determine the level of awareness of religious leaders and seminarians in Ibadan, Nigeria, on palliative care. Methods: Data obtained from a cross-section of 302 religious leaders and seminarians in ...
Lloyd-Williams, Mari; Field, David
Responses from 46 of 108 nurse educators in the United Kingdom indicated that diploma students received a mean of 7.8 hours and degree students 12.2 hours of palliative care training. Although 82% believed it should be a core component, 67% had difficulty finding qualified teachers. Palliative care knowledge was not formally assessed in most…
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many
Spickermann, Maximilian; Lenz, Philipp
At the end of life patients with a life-limiting disease are often admitted to emergency departments (ED). Mostly, in the setting of an ED there may not be enough time to meet the needs for palliative care (PC) of these patients. Therefore, integration of PC into the ED offers a solution to improve their treatment. In the outpatient setting a cooperation between prehospital emergency services, the patient's general practitioner and specialized outpatient PC teams may allow the patient to die at home - this is what most patients prefer at the end of life. Furthermore, due to the earlier integration of PC after admission the hospital stay is shortened. Also the number of PC consultations may increase. Additionally, a screening of PC hneeds among all patients visiting the ED may be beneficial: to avoid not meeting existing PC needs and to standardize the need of PC consultation. An example for such a screening tool is the "Palliative Care and Rapid Emergency Screening" (P-CaRES). © Georg Thieme Verlag KG Stuttgart · New York.
Muishout, George; van Laarhoven, Hanneke W M; Wiegers, Gerard; Popp-Baier, Ulrike
Muslim norms concerning palliative sedation can differ from secular and non-Muslim perceptions. Muslim physicians working in a Western environment are expected to administer palliative sedation when medically indicated. Therefore, they can experience tension between religious and medical norms. To gain insight into the professional experiences of Muslim physicians with palliative sedation in terms of religious and professional norms. Interpretative phenomenological study using semi-structured interviews to take a closer look at the experiences of Muslim physicians with palliative sedation. Data were recorded, transcribed and analysed by means of interpretative phenomenological analysis (IPA). Ten Muslim physicians, working in the Netherlands, with professional experience of palliative sedation. Two main themes were identified: professional self-concept and attitudes towards death and dying. Participants emphasized their professional responsibility when making treatment decisions, even when these contravened the prevalent views of Islamic scholars. Almost all of them expressed the moral obligation to fight their patients' pain in the final stage of life. Absence of acceleration of death was considered a prerequisite for using palliative sedation by most participants. Although the application of palliative sedation caused friction with their personal religious conceptions on a good death, participants followed a comfort-oriented care approach corresponding to professional medical standards. All of them adopted efficient strategies for handling of palliative sedation morally and professionally. The results of this research can contribute to and provide a basis for the emergence of new, applied Islamic ethics regarding palliative sedation.
Lancaster, Harriet; Finlay, Ilora; Downman, Maxwell; Dumas, James
Some failures in end-of-life care have been attributed to inconsistent provision of palliative care across England. We aimed to explore the variation in commissioning of services by Clinical Commissioning Groups (CCGs) using a data collection exercise. We sent a Freedom of Information request in the form of an open questionnaire to all 209 CCGs in England to assess their commissioning of palliative and end-of-life care services, mainly focused on the provision of specialist palliative care services. 29 CCGs provided information about the number of patients with some form of palliative care needs in their population. For specialist palliative care services, CCGs allocated budgets ranging from £51.83 to £2329.19 per patient per annum. 163 CCGs (77.90%) currently commission 7-day admission to their specialist palliative care beds. 82.84% of CCGs commission 7-day specialist palliative care services in patients' own homes and out-of-hours services rely heavily on hospice provision. 64 CCGs (31.37%) commission pain control teams, the majority of whom only operate in regular working hours. 68.14% of CCGs reported commissioning palliative care education of any sort for healthcare professionals and 44.85% of CCGs had no plans to update or review their palliative care services. The most important finding from this exercise is that the information CCGs hold about their population and services is not standardised. However, information based on data that are more objective, for example, population and total budget for palliative care, demonstrate wide variations in commissioning. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Pype, Peter; Teuwen, Inge; Mertens, Fien; Sercu, Marij; De Sutter, An
Palliative sedation is a therapeutic option to control refractory symptoms in terminal palliative patients. This study aims at describing the occurrence and characteristics of suboptimal palliative sedations in primary care and at exploring the way general practitioners (GPs) experience suboptimal palliative sedation in their practice. We conducted a mixed methods study with a quantitative prospective survey in primary care and qualitative semi-structured interviews with GPs. The research team defined suboptimal palliative sedation as a time interval until deep sleep >1.5 h and/ or >2 awakenings after the start of the unconsciousness. Descriptive statistics were calculated on the quantitative data. Thematic analysis was used to analyse interview transcripts. We registered 63 palliative sedations in 1181 home deaths, 27 forms were completed. Eleven palliative sedations were suboptimal: eight due to the long time span until deep sleep; three due the number of unintended awakenings. GPs' interview analysis revealed two major themes: the shifting perception of failure and the burden of responsibility. Suboptimal palliative sedation occurs frequently in primary palliative care. Efficient communication towards family members is needed to prevent them from having unrealistic expectations and to prevent putting pressure on the GP to hasten the procedure. Sharing the burden of decision-making during the procedure with other health care professionals might diminish the heavy responsibility as perceived by GPs.
Silveira, Natyele Rippel; Nascimento, Eliane Regina Pereira do; Rosa, Luciana Martins da; Jung, Walnice; Martins, Sabrina Regina; Fontes, Moisés Dos Santos
to know the feelings of nurses regarding palliative care in adult intensive care units. qualitative study, which adopted the theoretical framework of Social Representations, carried out with 30 nurses of the state of Santa Catarina included by Snowball sampling. Data were collected through semi-structured interviews conducted from April to August 2015, organized and analyzed through the Collective Subject Discourse. the results showed how central ideas are related to feelings of comfort, frustration, insecurity and anguish, in addition to the feeling that the professional training and performance are focused on the cure. the social representations of nurses regarding the feelings related to palliative care are represented mainly by negative feelings, probably as consequence of the context in which care is provided.
Simon, Steffen T; Ramsenthaler, Christina; Bausewein, Claudia; Krischke, Norbert; Geiss, Gerlinde
Self-awareness of one's own reactions towards patients and their relatives is of paramount importance for all professionals in palliative care. 'Core attitude' describes the way in which a person perceives himself and the world, and forms the basis for his actions and thoughts. The aim of this study is to explore what core attitude means for palliative care professionals and whether there is a specific core attitude in palliative care. Qualitative study with 10 face-to-face in-depth interviews with experts in palliative care (nurses, physicians, social workers, psychologists, chaplain) in Germany. Core attitude in palliative care can be best described with the following three domains: 1) personal characteristics; 2) experience of care; and 3) competence in care. Authenticity is the most important characteristic of professionals, along with honesty and mindfulness. Core attitude primarily becomes apparent in the relationship with the patient. Perception and listening are key competences. The experts emphasized the universality of the core attitude in the care of ill people. They stressed the importance and relevance of teaching core attitudes in palliative care education. In the field of palliative care, core attitude consists predominately of authenticity, manifests itself in relationships, and requires a high degree of perceptiveness.
Silva, Rudval Souza da; Trindade, Géssica Sodré Sampaio; Paixão, Gilvânia Patrícia do Nascimento; Silva, Maria Júlia Paes da
to analyze the attributes, antecedents and consequents of the family conference concept. Walker and Avante's method for concept analysis and the stages of the integrative review process, with a selection of publications in the PubMed, Cinahl and Lilacs databases focusing on the family conference theme in the context of palliative care. the most cited antecedents were the presence of doubts and the need to define a care plan. Family reunion and working instrument were evidenced as attributes. With respect to consequents, to promote the effective communication and to establish a plan of consensual action were the most remarkable elements. the scarcity of publications on the subject was observed, as well as and the limitation of the empirical studies to the space of intensive therapy. Thus, by analyzing the attributes, antecedents and consequents of the concept it was possible to follow their evolution and to show their efficacy and effectiveness as a therapeutic intervention.
Voeuk, Anna; Nekolaichuk, Cheryl; Fainsinger, Robin; Huot, Ann
Palliative sedation can be used for refractory symptoms during end-of-life care. However, continuous palliative sedation (CPS) for existential distress remains controversial due to difficulty determining when this distress is refractory. The aim was to determine the opinions and practices of Canadian palliative care physicians regarding CPS for existential distress. A survey focusing on experience and views regarding CPS for existential distress was sent to 322 members of the Canadian Society of Palliative Care Physicians. Eighty-one surveys returned (accessible target, 314), resulting in a response rate of 26%. One third (31%) of the respondents reported providing CPS for existential distress. On a 5-point Likert-type scale, 40% of participants disagreed, while 43% agreed that CPS could be used for existential distress alone. Differing opinions exist regarding this complex and potentially controversial issue, necessitating the education of health-care professionals and increased awareness within the general public.
Ferris, Frank D; Moore, Shannon Y; Callaway, Mary V; Foley, Kathleen M
The International Palliative Care Leadership Development Initiative (LDI) was a model demonstration project that aimed to expand the global network of palliative care leaders in low- and moderate-resource countries who are well positioned to apply their new leadership skills. Thirty-nine palliative medicine physicians from 25 countries successfully completed the two-year curriculum that included three thematic residential courses, mentorship, and site visits by senior global palliative care leaders and personal projects to apply their new leadership skills. The focus on self-reflection, leadership behaviors and practices, strategic planning, high-level communication, and teaching skills led to significant personal and professional transformation among the participants, mentors, and the LDI team. The resulting residential course curriculum and the personal leadership stories and biosketches of the leaders are now available open access at IPCRC.net. Already, within their first-year postgraduation, the leaders are using their new leadership skills to grow palliative care capacity through significant changes in policy, improved opioid/other medication availability, new and enhanced educational curricula and continuing education activities, and development/expansion of palliative care programs in their organizations and regions. We are not aware of another palliative care initiative that achieves the global reach and ripple effect that LDI has produced. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan
In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.
Jul 2, 2011 ... research interests in primary palliative care and medical education. LINDa gaNca ... professional nurse administers medication and gives nursing care, the social worker .... future communication in the therapeutic relationship.
Blacquiere, Dylan; Bhimji, Khadija; Meggison, Hilary; Sinclair, John; Sharma, Michael
The determinants of satisfaction for families of acute stroke patients receiving palliative care have not been extensively studied. We surveyed families to determine how they perceived palliative care after stroke. Families of patients palliated after ischemic stroke, intracerebral, or subarachnoid hemorrhage were approached. Four weeks after the patient's death, families were administered the After-Death Bereaved Family Member Interview to determine satisfaction with the care provided. Fifteen families participated. Families were most satisfied with participation in decision making and least satisfied with attention to emotional needs. In stroke-specific domains, families had less satisfaction with artificial feeding, hydration, and communication. Overall satisfaction was high (9.04 out of 10). Families of patients receiving palliative care at our institution showed generally high satisfaction with palliation after stroke; specific domains were identified for improvement. Further study in larger populations is required.
Rosenblatt, E.; Zubizarreta, E.; Camacho, R.; Vikram, B.
Cancer control, cancer care and cancer treatment are three different concepts, although the terms are often used interchangeably. Cancer control is the reduction in the incidence, morbidity and mortality of cancer, as well as the improvement in the quality of life of cancer patients and their families. As such, cancer control includes actions relating to prevention, early detection and screening, diagnosis, treatment and palliative care. Cancer care includes all actions and interventions aimed at supporting, assisting and treating cancer patients. Cancer care includes cancer treatment, but also other forms of support such as nutrition, symptom relief, speech therapy, physiotherapy, stoma care, nursing care, lymphoedema care and psychosocial care. Cancer treatment includes medical interventions aimed at the cure or palliation of a patient who has been diagnosed with cancer. As such, cancer treatment modalities include surgery, radiotherapy, systemic therapies such as chemotherapy, hormone therapy, immunotherapy, gene therapy and other investigational strategies.
Byock, Ira; Twohig, Jeanne Sheils; Merriman, Melanie; Collins, Karyn
Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundation, funded 22 demonstration projects representing a wide range of health care settings and patient populations to develop innovative models for delivering palliative care that addressed documented deficiencies in the care of patients and families facing the final stage of life. To determine the practicality (feasibility of development and operation as well as acceptance by stakeholders) of new models of care and to determine the impact of the models on access to, quality of and financing for palliative care. The program cannot report scientifically rigorous outcomes, but the grant-funded projects used a variety of methods and measures to assess acceptance of new models and their impact from the perspectives of various stakeholders, including patients and their families, clinicians, administrators and payers. While it is not possible to aggregate data across projects, the data reported to the Promoting Excellence national program office were used to describe program impact with respect to the practicality of palliative care service integration into existing clinical care settings (feasibility and acceptance by stakeholders), the availability and use of palliative care services (access), quality of care (conformance to patient expectations and accepted clinical standards) and costs of care. The 22 projects provided services in urban as well as rural settings, in integrated health systems, hospitals, outpatient clinics, cancer centers, nursing homes, renal dialysis clinics, inner city public health and safety net systems and prisons. Populations served included prison inmates, military veterans, renal dialysis patients, Native Americans, Native Alaskans, and African American patients, inner-city medically underserved patients, pediatric patients, and persons with serious mental illness patients. Hosting or adopting institutions sustained or expanded twenty of the 22 models
McConnell, Tracey; Porter, Sam
Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.
I. P. Рonomareva
Full Text Available The purpose of the study is to identify the main problems and prospects of development of palliative care in geriatrics at the present stage. Method of research was to analyze the printed and electronic databases that meet the stated issues. The results of the study highlight the problems of the development of palliative care in geriatric practice: the lack of a developed procedure of rendering palliative care and adequate elderly patient selection criteria, the lack of trained professional staff. The main prospects-association of palliative practices and concepts of modern geriatrics required specialized geriatric assessment and the provision of clinical, medical, social and socio-psychological geriatric syndromes. While promising option for the development of palliative care geriatrics is the integration into the existing health care system, acceptance of the fact that it is a part of the specialized geriatric care. This requires the involvement and training of not only specialists with medical education, but also persons without medical training from among social workers and volunteers working in palliative care. Therefore, the obtained data allowed to conclude that topical is the development of palliative care in geriatrics, taking into account not only clinical but medico-social, socio-psychological features.
Lisa M. Linge-Dahl
Full Text Available Background: The central goal of palliative care is to optimize the quality of life of patients suffering from life-limiting illnesses, which includes psychosocial and spiritual wellbeing. Research has demonstrated positive correlations between humor and laughter with life satisfaction and other aspects of wellbeing, and physiological symptoms can be improved by humorous stimuli.Objectives: The aim of this review is to evaluate humor interventions and assessments that have been applied in palliative care and to derive implications for future research.Methods: A systematic review of four databases identified 13 included studies. Criteria for inclusion were peer-reviewed English-language studies on humor interventions or assessments in a palliative care context.Results: Two studies on humor interventions and 11 studies on humor assessment were included in the systematic review. Most of these studies were about the patients' perspective on humor in palliative care. Findings showed that humor had a positive effect on patients, their relatives, and professional caregivers. Humor was widely perceived as appropriate and seen as beneficial to care in all studies.Conclusions: Even though humor interventions seem to be potentially useful in palliative care, descriptions evaluating their use are scarce. Overall, research on humor assessment and interventions in palliative care has remained limited in terms of quantity and quality. More research activities are needed to build a solid empirical foundation for implementing humor and laughter as part of regular palliative care activities.
Harrop, Emily Jane; Brombley, Karen; Boyce, Katherine
Pain and distress in the paediatric palliative care population can be very difficult to manage. Clinical scenarios range from the acute management of cancer-related pain at the end of life to the ongoing long-term support of children with complex multimodal pain related to progressive neurological conditions. Understanding the child's underlying condition, possible causes of pain and their preferred mode of communication are important to the delivery of holistic care. Modification of environmental factors, basic care consideration and non-pharmacological measures have a large role to play, alongside conventional analgesics. Medication may also need to be delivered by novel routes such as transdermal patches, continuous subcutaneous infusion of multiple drugs or transmucosal breakthrough analgesic doses. Two cases are used to illustrate approaches to these clinical problems. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Hill, Douglas L; Walter, Jennifer K; Casas, Jessica A; DiDomenico, Concetta; Szymczak, Julia E; Feudtner, Chris
Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach. We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration. The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices. The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.
Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries.
den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Payne, Sheila; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen
Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Qualitative group interview design. A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses ( n = 66; 46%) and physicians ( n = 50; 35%). The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.
Adsersen, Mathilde; Thygesen, Lau Caspar; Neergaard, Mette Asbjoern
BACKGROUND: Admittance to specialized palliative care (SPC) has been discussed in the literature, but previous studies examined exclusively those admitted, not those with an assessed need for SPC but not admitted. The aim was to investigate whether admittance to SPC for referred adult patients...... with cancer was related to sex, age, diagnosis, geographic region or referral unit. MATERIAL AND METHODS: A register-based study with data from the Danish Palliative Care Database (DPD). From DPD we identified all adult patients with cancer, who died in 2010-2012 and who were referred to and assessed to have...
Hudson, Peter; Street, Annette; Graham, Suzanne; Aranda, Sanchia; O'Connor, Margaret; Thomas, Kristina; Jackson, Kate; Spruyt, Odette; Ugalde, Anna; Philip, Jennifer
The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.
Hoek, Patrick; Grandjean, Ilse; Verhagen, Constans A H H V M; Jansen-Landheer, Marlies L E A; Schers, Henk J; Galesloot, Cilia; Vissers, Kris C P; Engels, Yvonne; Hasselaar, Jeroen G J
Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51-2.12) or COPD (OR 1.39; 95% CI: 1.15-1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22-1.40), agitation/delirium (OR 1.57; 95% CI: 1.47-1.68), exhaustion (OR 2.89; 95% CI: 2.61-3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37-2.96) or existential issues (OR 1.55; 95% CI: 1.31-1.83). In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life.
Full Text Available Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation.We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations. We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations.Of the 44,443 initial consultations, most were requested by general practitioners (73% and most concerned patients with cancer (86%. Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51-2.12 or COPD (OR 1.39; 95% CI: 1.15-1.69 than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22-1.40, agitation/delirium (OR 1.57; 95% CI: 1.47-1.68, exhaustion (OR 2.89; 95% CI: 2.61-3.20, euthanasia-related questions (OR 2.65; 95% CI: 2.37-2.96 or existential issues (OR 1.55; 95% CI: 1.31-1.83.In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life.
Yun, Young Ho; Kang, Eun Kyo; Lee, Jihye; Choo, Jiyeon; Ryu, Hyewon; Yun, Hye-Min; Kang, Jung Hun; Kim, Tae You; Sim, Jin-Ah; Kim, Yaeji
In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care. Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals. Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568-0.995) and discriminant (0.472-0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained. This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer.
Full Text Available The label “translational research” (TR has become ever more popular in the biomedical domain in recent years. It is usually presented as an attempt to bridge a supposed gap between knowledge produced at the laboratory bench and its use at the clinical bedside. This is claimed to help society harvest the benefits of its investments in scientific research. The past decade has witnessed a remarkable acceleration in the pace of translational cancer medicine – genome sequencing of various human cancers has been broadly deployed in drug discovery programs, diagnostic tests have been developed to predict molecularly targeted anticancer agents, advent of cancer immunotherapies, an enhanced appreciation of the complex interactions that exist between tumor cells and their microenvironment have revolutionized the management of cancers. Treatment for cancer and palliative care (PC go hand in hand and the role of TR in PC can no longer be ignored. This paper discusses about the scientific discourse of TR in cancer care and its implications for the practice of PC. It starts with a brief reconstruction of the history of the concept and subsequently unravels how the label is used in clinical/research practice. In conclusion, TR seems to be driven by a changed relationship between science and society. “Translation” has become important because society is thought to deserve a tangible return in terms of health and quality of life on its investment in basic biomedical science.
Shahid, Shaouli; Bessarab, Dawn; van Schaik, Katherine D; Aoun, Samar M; Thompson, Sandra C
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. 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. 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. 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
Goldschmidt, Dorthe; Groenvold, Mogens; Johnsen, Anna Thit
BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one...... month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced...... by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory...
Al-Kindi, Sadeer G; Zeinah, Ghaith F Abu; Hassan, Azza Adel
Formal palliative care (PC) education is lacking in the middle eastern state of Qatar. This study was done to assess the need for PC education among oncology nurses in Qatar. In March 2012, a self-constructed questionnaire was distributed to 115 nurses at the Qatar National Center for Cancer Care and Research. A total of 115 nurses responded to the questionnaire. The majority (87.8%) were female. Although 60% had more than 10 years of work experience, only 31% had received formal training in PC, with only 6.1% having completed postgraduate training. The majority (63%) of responders attributed this issue to unavailability of PC courses rather than lack of time, interest, or financial issues. Currently, only 16.7% did not express interest in the field, with 56% showing some kind of interest. In terms of knowledge, 54% of the responders were familiar with the World Health Organization ladder for pain relief. Only 43.6% know about Palliative Performance Scale, and half of the nurses know the Edmonton Symptom Assessment System. Overall, 56% of the nurses indicated a need for training in more than 1 aspect. These aspects included training in care of the dying patients (14.6%), communication strategies (22%), caregiver support (10.6%), psychosocial care (15%), pain management (10.2%), other symptom management (13%), and other ethical/spiritual issues (14.2%). There is a clear deficiency in formal PC education among the nurses at the National Center for Cancer Care and Research, in Qatar. This is reflected by their lack of experience and exposure to PC and their mediocre knowledge in the field. This could be attributed to the fact that formal PC service was established only recently in Qatar (2008). Formal training courses in PC nursing are required. © The Author(s) 2013.
Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis
Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.
Seow, Hsien; Dhaliwal, Gagan; Fassbender, Konrad; Rangrej, Jagadish; Brazil, Kevin; Fainsinger, Robin
Prior research on community-based specialist palliative care teams used outcome measures of place of death and/or dichotomous outcome measures of acute care use in the last two weeks of life. However, existing research seldom measured the diverse places of care used and their timing prior to death. The study objective was to examine the place of care in the last 30 days of life. In this retrospective cohort study, patients who received care from a specialist palliative care team (exposed) were matched by propensity score to patients who received usual care in the community (unexposed) in Ontario, Canada. Measured was the percentage of patients in each place of care in the last month of life as a proportion of the total cohort. After matching, 3109 patients were identified in each group, where 79% had cancer and 77% received end-of-life home care. At 30 days compared to 7 days before death, the exposed group's proportions rose from 33% to 41% receiving home care and 14% to 15% in hospital, whereas the unexposed group's proportions rose from 28% to 32% receiving home care and 16% to 22% in hospital. Linear trend analysis (proportion over time) showed that the exposed group used significantly more home care services and fewer hospital days (p care. Examining place of care in the last month can effectively illustrate the service use trajectory over time.
Measurement Equivalence of the Patient Reported Outcomes Measurement Information System® (PROMIS®) Pain Interference Short Form Items: Application to Ethnically Diverse Cancer and Palliative Care Populations.
Teresi, Jeanne A; Ocepek-Welikson, Katja; Cook, Karon F; Kleinman, Marjorie; Ramirez, Mildred; Reid, M Carrington; Siu, Albert
Reducing the response burden of standardized pain measures is desirable, particularly for individuals who are frail or live with chronic illness, e.g., those suffering from cancer and those in palliative care. The Patient Reported Outcome Measurement Information System ® (PROMIS ® ) project addressed this issue with the provision of computerized adaptive tests (CAT) and short form measures that can be used clinically and in research. Although there has been substantial evaluation of PROMIS item banks, little is known about the performance of PROMIS short forms, particularly in ethnically diverse groups. Reviewed in this article are findings related to the differential item functioning (DIF) and reliability of the PROMIS pain interference short forms across diverse sociodemographic groups. DIF hypotheses were generated for the PROMIS short form pain interference items. Initial analyses tested item response theory (IRT) model assumptions of unidimensionality and local independence. Dimensionality was evaluated using factor analytic methods; local dependence (LD) was tested using IRT-based LD indices. Wald tests were used to examine group differences in IRT parameters, and to test DIF hypotheses. A second DIF-detection method used in sensitivity analyses was based on ordinal logistic regression with a latent IRT-derived conditioning variable. Magnitude and impact of DIF were investigated, and reliability and item and scale information statistics were estimated. The reliability of the short form item set was excellent. However, there were a few items with high local dependency, which affected the estimation of the final discrimination parameters. As a result, the item, "How much did pain interfere with enjoyment of social activities?" was excluded in the DIF analyses for all subgroup comparisons. No items were hypothesized to show DIF for race and ethnicity; however, five items showed DIF after adjustment for multiple comparisons in both primary and sensitivity
Measurement Equivalence of the Patient Reported Outcomes Measurement Information System® (PROMIS®) Pain Interference Short Form Items: Application to Ethnically Diverse Cancer and Palliative Care Populations
Teresi, Jeanne A.; Ocepek-Welikson, Katja; Cook, Karon F.; Kleinman, Marjorie; Ramirez, Mildred; Reid, M. Carrington; Siu, Albert
Reducing the response burden of standardized pain measures is desirable, particularly for individuals who are frail or live with chronic illness, e.g., those suffering from cancer and those in palliative care. The Patient Reported Outcome Measurement Information System® (PROMIS®) project addressed this issue with the provision of computerized adaptive tests (CAT) and short form measures that can be used clinically and in research. Although there has been substantial evaluation of PROMIS item banks, little is known about the performance of PROMIS short forms, particularly in ethnically diverse groups. Reviewed in this article are findings related to the differential item functioning (DIF) and reliability of the PROMIS pain interference short forms across diverse sociodemographic groups. Methods DIF hypotheses were generated for the PROMIS short form pain interference items. Initial analyses tested item response theory (IRT) model assumptions of unidimensionality and local independence. Dimensionality was evaluated using factor analytic methods; local dependence (LD) was tested using IRT-based LD indices. Wald tests were used to examine group differences in IRT parameters, and to test DIF hypotheses. A second DIF-detection method used in sensitivity analyses was based on ordinal logistic regression with a latent IRT-derived conditioning variable. Magnitude and impact of DIF were investigated, and reliability and item and scale information statistics were estimated. Results The reliability of the short form item set was excellent. However, there were a few items with high local dependency, which affected the estimation of the final discrimination parameters. As a result, the item, “How much did pain interfere with enjoyment of social activities?” was excluded in the DIF analyses for all subgroup comparisons. No items were hypothesized to show DIF for race and ethnicity; however, five items showed DIF after adjustment for multiple comparisons in both primary and
Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss EM
Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest. PMID:28156188
Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss Em
Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. To assess national models and methods for financing and reimbursing palliative care. Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.
Appelin, Gunilla; Brobäck, Gunilla; Berterö, Carina
The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home? The findings indicate that the advantages of palliative care at home is; striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation.
Rhodes, Rosamond; Strain, James J
Palliative care has had a long-standing commitment to teaching medical students and other medical professionals about pain management, communication, supporting patients in their decisions, and providing compassionate end-of-life care. Palliative care programs also have a critical role in helping patients understand medical conditions, and in supporting them in dealing with pain, fear of dying, and the experiences of the terminal phase of their lives. We applaud their efforts to provide that critical training and fully support their continued important work in meeting the needs of patients and families. Although we appreciate the contributions of palliative care services, we have noted a problem involving some palliative care professionals' attitudes, methods of decisionmaking, and use of language. In this article we explain these problems by discussing two cases that we encountered.
Full Text Available With the recent approval of a South African (SA National Policy Framework and Strategy for Palliative Care by the National Health Council, it is pertinent to reflect on initiatives to develop palliative care services in public hospitals. This article reviews the development of hospital-based palliative care services in the Western Cape, SA. Palliative care services in SA started in the non-governmental sector in the 1980s. The first SA hospital-based palliative care team was established in Charlotte Maxeke Johannesburg Academic Hospital in 2001. The awareness of the benefit of palliative care in the hospital setting led to the development of isolated pockets of excellence providing palliative care in the public health sector in SA. This article describes models for palliative care at tertiary, provincial and district hospital level, which could inform development of hospital-based palliative care as the national policy for palliative care is implemented in SA.
Neilson, SJ; Gibson, F; Greenfield, SM
Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the\\ud role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents.\\ud Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents\\ud following the death. A grounded theory data analysis was undertaken; identifying...
Full Text Available Psychiatric and psychosocial disorders among cancer patients have been reported as a major consequence of the disease and treatment. The problems in applying a pure psychiatric approach have determined the need for structuring more defined methods, including screening for distress and emotional symptoms and a more specific psychosocial assessment, to warrant proper care to cancer patients with psychosocial problems. This review examines some of the most significant issues related to these two steps, screening and assessment of psychosocial morbidity in cancer and palliative care. With regard to this , the many different variables, such as the factors affecting individual vulnerability (e.g. life events, chronic stress and allostatic load, well-being, and health attitudes and the psychosocial correlates of medical disease (e.g. psychiatric disturbances, psychological symptoms, illness behavior, and quality of life which are possibly implicated not only in classical psychiatric disorders but more broadly in psychosocial suffering. Multidimensional tools (e.g. and specific psychosocially oriented interview (e.g. the Diagnostic Criteria for Psychosomatic Research - DCPR represent a way to screen for and assess emotional distress, anxiety and depression, maladaptive coping, dysfunctional attachment, as well as other significant psychosocial dimensions secondary to cancer, such as demoralization and health anxiety. Cross-cultural issues, such as language, ethnicity, race, and religion, are also discussed as possible factors influencing the patients and families perception of illness, coping mechanisms, psychological response to a cancer diagnosis.
Complex decongestive therapy (CDT) is a regimen of physical treatment for lymphedema. Its effectiveness is unknown in advanced cancer patients. This study evaluates effectiveness of CDT in this population.
Erichsén, E; Milberg, A; Jaarsma, T; Friedrichsen, M
For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied. The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation. Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios. Patients with hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both constipated, MC & PC, (n = 78) had higher odds of having cancer- disease. There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.
Bar-Sela, Gil; Vorobeichik, Marina; Drawsheh, Saher; Omer, Anat; Goldberg, Victoria; Muller, Ella
Background. Cancer patients using cannabis report better influence from the plant extract than from synthetic products. However, almost all the research conducted to date has been performed with synthetic products. We followed patients with a medicinal cannabis license to evaluate the advantages and side effects of using cannabis by cancer patients. Methods. The study included two interviews based on questionnaires regarding symptoms and side effects, the first held on the day the license was...
Full Text Available Introduction: There is a gradual increasing trend in childhood cancers in India and pediatric palliative care in India is an emerging specialty. Prescribing pain and symptom control drugs in children with cancer requires knowledge of palliative care formulary, dosing schedules, and prescription guidelines. This study is a retrospective audit of prescribing practices of a specialist palliative care service situated in a tertiary cancer center. Methods: A total of 1135 medication records of children receiving specialist pediatric palliative care services were audited for 5 years (2010-2014 to evaluate prescribing practices in children with advanced cancer. Results: A total of 51 types of drugs were prescribed with an average of 4.2 drugs per prescription. 66.9% of the prescriptions had paracetamol, and 33.9% of the prescriptions had morphine. Most common nonsteroidal anti-inflammatory drugs prescribed was ibuprofen (23.9%, and more than 50% of the prescriptions had aperients. The most commonly prescribed aperient was a combination of liquid paraffin and sodium-picosulfate. Dexamethasone was prescribed in 51.9% of patients and in most cases this was part of oral chemotherapy regimen. Generic names in prescription were used only in 33% of cases, and adverse effects of the drugs were documented in only 9% of cases. In 25% of cases, noncompliance to the WHO prescription guidelines was seen, and patient compliance to prescription was seen in 40% of cases. Conclusions: Audit of the prescribing practices in specialist pediatric palliative care service shows that knowledge of pediatric palliative care formulary, rational drug use, dosing, and prescribing guidelines is essential for symptom control in children with advanced life-limiting illness. Noncompliance to WHO prescribing guidelines in one fourth of cases and using nongeneric names in two-thirds of prescription indicates poor prescribing practices and warrants prescriber education. Prescription
van Laarhoven, Hanneke W M; Schilderman, Johannes; Verhagen, Constans A H H V M; Prins, Judith B
: Attitudes toward guilt and forgiveness may be important factors determining distress in cancer patients. Direct comparative studies in patients with different life expectancies exploring attitudes toward guilt and forgiveness are lacking. Also, sociodemographic and religious characteristics determining the attitudes toward guilt and forgiveness are unknown. : The objective of this study was to compare attitudes toward guilt and forgiveness in cancer patients without evidence of disease and advanced cancer patients. : A descriptive research design was used. Ninety-seven patients without evidence of disease and 55 advanced cancer patients filled out the Dutch Guilt Measurement Instrument and the Forgiveness of Others Scale. : Both groups had an attitude of nonreligious guilt and forgiveness, but not of religious guilt. No significant differences in attitudes toward guilt and forgiveness were observed between the 2 groups. In contrast to sociodemographic characteristics, religious characteristics were relevant predictors for guilt and forgiveness. Significant differences in relations between images of God and attitudes toward guilt were observed between the 2 patient groups. : An attitude of nonreligious guilt and forgiveness was found in cancer patients, irrespective of the stage of disease. Religious characteristics were significantly associated with attitudes of guilt and forgiveness. This correlation differed in the early and the advanced setting of disease. : The observed relations between religious characteristics and attitudes of guilt and forgiveness suggest that a careful examination of the role of religious beliefs and values is relevant in the clinical care of patients with cancer, both in the setting of early and advanced disease.
Full Text Available Abstract 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
Pelayo, Marta; Cebrián, Diego; Areosa, Almudena; Agra, Yolanda; Izquierdo, Juan Vicente; Buendía, Félix
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. 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. 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
Juth, Niklas; Lindblad, Anna; Lynöe, Niels; Sjöstrand, Manne; Helgesson, Gert
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. 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. 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.
Full Text Available Abstract 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.
Full Text Available Background: The goal of palliative care is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. The knowledge of nurses influences the quality of care provided to these patients. The present study aimed at identifying the level of knowledge and attitude of nursing students who are the future caretakers of patients, which helps to make recommendations in incorporating palliative care concepts in the nursing curriculum. Objectives: (1 To assess the level of knowledge of nursing students on palliative care; (2 To identify the attitude of nursing students towards palliative care; (3 To find the correlation between the knowledge and attitude of nursing students; (4 To find the association between nursing students′ knowledge, attitude and selected demographic variables. Materials and Methods: A correlative survey was carried out among 83 third-year Diploma Nursing students by using cluster sampling method from selected nursing schools of Udupi district. Results: The data analyzed showed that the majority (51% of them was in the age group of 21years and 92% of them were females. Only 43.4% of them were aware of the term palliative care and it was during their training period. The data showed that 79.5% of students had poor knowledge (6.4± 1.64 on palliative care and 92.8% of them had favorable attitude (56.7± 8.5 towards palliative care. The chi-square showed a significant association between knowledge and age (χ2 =18.52,P<0.01 of the nursing students. Conclusion: Palliative care aspects should be incorporated in the diploma nursing curriculum.
Siosaki, Marcos Duarte; Lacerda, Croider Franco; Bertulucci, Paulo Anderson; da Costa Filho, José Orlando; de Oliveira, Antônio Talvane Torres
Esophageal cancer is a devastating disease with rapidly increasing incidence in Western countries. Dysphagia is the most common complication, causing severe malnutrition and reduced quality of life. A 69-year-old male with persistent esophageal cancer after radiation therapy was subjected to palliative by-pass surgery using a laparoscopic approach. Due to the advanced stage at diagnosis, palliative treatment was a more realistic option. Dysphagia is a most distressing symptom of this disease, causing malnutrition and reducing quality of life. The goal of palliation is to improve swallowing. The most common methods applied are endoscopic stenting, radiation therapy (external or brachytherapy), chemotherapy, yttrium-aluminum-garnet laser rechanneling or endoscopic dilatation. Palliative surgery is rarely proposed due to morbidity and complications. This paper demonstrates an update in the technique proposed by Postlethwait in 1979 for palliation of esophageal cancer. Published by Oxford University Press and JSCR Publishing Ltd. All rights reserved. © The Author 2013.
Benitez-Rosario, Miguel Angel; Castillo-Padrós, Manuel; Garrido-Bernet, Belén; Ascanio-León, Belen
The European Association for Palliative Care and the U.S. National Hospice and Palliative Care Organization have published statements that recommend an audit of palliative sedation practices. The aim was to assess the feasibility of a quality care project in palliative sedation. We carried out an audit of adherence to a guideline regarding palliative sedation, undertaken as a yearly assessment during two years, of a sample of patient charts. With an audit tool, the charts were evaluated as to the presence of the ethical sedation checklist, information that justified palliative sedation, patient and/or family agreement, and the appropriateness of treatment in concordance with the clinical protocol. An educational program and result feedback meetings were used as the implementation strategy. Roughly 25% of the medical charts of patients who died in the palliative care unit were evaluated, 94 in 2007 and 110 in 2008. In 2007 and 2008, 63% and 57% of the patients, respectively, whose median age was 65 years, were sedated, with a median length of two days. The main reason for sedation was agitation concomitant with respiratory failure in roughly 60% and 75% of the cases in 2007 and 2008, respectively. Agreement of the patient/family about sedation was collected from 100% of the cases. The concordance of procedures with the sedation guideline was 100% in both years. Our quality-of-care strategy was shown to obtain a higher level of compliance with the palliative sedation guideline for at least two years. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Carter, Brian S
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia. © The Author(s) 2014.
Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu
In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids.
Rani P Mol
Full Text Available 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.
Olsman, E.; Leget, C.; Onwuteaka-Philipsen, B.D.; Willems, D.
Background: Healthcare professionals? perspectives on palliative care patients? hope influence communication. However, these perspectives have hardly been examined. Aim: To describe healthcare professionals? perspectives on palliative care patients? hope found in the literature. Design: The
Olsman, Erik; Leget, Carlo; Onwuteaka-Philipsen, Bregje; Willems, Dick
Healthcare professionals' perspectives on palliative care patients' hope influence communication. However, these perspectives have hardly been examined. To describe healthcare professionals' perspectives on palliative care patients' hope found in the literature. The interpretative synthesis
Vahedi Nikbakht-van de Sande, C.V.; Braat, C.; Vissers, A.P.; Delnoij, D.; Staa, A.L.
Purpose of the research Implement and evaluate the Care Programme for Palliative Radiotherapy (CPPR) in the Outpatient Clinic of the Department of Radiotherapy, Erasmus MC-Cancer Institute, Rotterdam, The Netherlands. Methods Participatory Action Research (PAR). Qualitative descriptive design:
Significant developments have occurred in the discipline of palliative care in the modern era. This paper shall explore those developments, challenge some widely held misconceptions about the role and daily practice of the discipline, highlight the growing recognition of the role of palliative care in non-malignant diseases, briefly discuss innovations in symptom management and reflect on the underlying principles, maturation and challenges faced by the discipline. © 2017 Royal Australasian College of Physicians.