Daly, Donnelle; Matzel, Stephen Chavez
A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness.
Gardiner, C.; Cobb, M.; Gott, M.; Ingleton, C.
Background: the need for access to high-quality palliative care at the end of life is becoming of increasing public health concern. The majority of deaths in the UK occur in acute hospitals, and older people are particularly likely to die in this setting. However, little is known about the barriers to palliative care provision for older people within acute hospitals.\\ud \\ud Objective: to explore the perspectives of health professionals regarding barriers to optimal palliative care for older p...
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 ...
Boer, M.E. de; Depla, M.; Woijtkwiak, J.; Francke, A.; Visser, M.C.; Widdershoven, G.; Hertogh, C.M.P.M.
Aims: Palliative care has potentially a lot to offer to patients in the acute phase after a severe stroke, but its deliberation and decisions towards palliative care are limited in this phase. This study aims at providing insight into the experiences of relatives of stroke patients with the care
Gardiner, Clare; Cobb, Mark; Gott, Merryn; Ingleton, Christine
the need for access to high-quality palliative care at the end of life is becoming of increasing public health concern. The majority of deaths in the UK occur in acute hospitals, and older people are particularly likely to die in this setting. However, little is known about the barriers to palliative care provision for older people within acute hospitals. to explore the perspectives of health professionals regarding barriers to optimal palliative care for older people in acute hospitals. fifty-eight health professionals participated in eight focus groups and four semi-structured interviews. participants identified various barriers to palliative care provision for older people, including attitudinal differences to the care of older people, a focus on curative treatments within hospitals and a lack of resources. Participants also reported differing understandings of whose responsibility it was to provide palliative care for older people, and uncertainly over the roles of specialist and generalist palliative care providers in acute hospitals. numerous barriers exist to the provision of high-quality palliative care for older people within acute hospital settings. Additional research is now required to further explore age-related issues contributing to poor access to palliative care.
... symptoms can cause fear and anxiety, the palliative care team usually includes: a physician or nurse who is an expert in prescribing medications or other symptom -relieving measures, behavioral health providers who can help answer your ...
... you are a partner with the palliative care team as you all work toward the same goal — providing the best quality of life for your child for as ... Care for Children With Terminal Illness Managing Home Health Care Taking Care of You: Support ...
Rodríguez-Calero, Miguel Ángel; Julià-Mora, Joana María; Prieto-Alomar, Araceli
Previous to wider prevalence studies, we designed the present pilot study to assess concordance and time invested in patient evaluations using a palliative care needs assessment tool. We also sought to estimate the prevalence of palliative care needs in an acute care hospital unit. A cross-sectional study was carried out, 4 researchers (2 doctors and 2 nurses) independently assessed all inpatients in an acute care hospital unit in Manacor Hospital, Mallorca (Spain), using the validated tool NECPAL CCOMS-ICO©, measuring time invested in every case. Another researcher revised clinical recordings to analise the sample profile. Every researcher assessed 29 patients, 15 men and 14 women, mean age 74,03 ± 10.25 years. 4-observer concordance was moderate (Kappa 0,5043), tuning out to be higher between nurses. Mean time per patient evaluation was 1.9 to 7.72 minutes, depending on researcher. Prevalence of palliative care needs was 23,28%. Moderate concordance lean us towards multidisciplinary shared assessments as a method for future research. Avarage of time invested in evaluations was less than 8 minutes, no previous publications were identified regarding this variable. More than 20% of inpatients of the acute care unit were in need of palliative care. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.
Lagman, Ruth; Walsh, Declan; Heintz, Jessica; Legrand, Susan B; Davis, Mellar P
Palliative care in advanced disease is complex. Knowledge and experience of symptom control and management of multiple complications are essential. An interdisciplinary team is also required to meet the medical and psychosocial needs in life-limiting illness. Acute care palliative medicine is a new concept in the spectrum of palliative care services. Acute care palliative medicine, integrated into a tertiary academic medical center, provides expert medical management and specialized care as part of the spectrum of acute medical care services to this challenging patient population. The authors describe a case series to provide a snapshot of a typical day in an acute care inpatient palliative medicine unit. The cases illustrate the sophisticated medical care involved for each individual and the important skill sets of the palliative medicine specialist required to provide high-quality acute medical care for the very ill.
Fox, Jennifer; Windsor, Carol; Connell, Shirley; Yates, Patsy
The positioning and meaning of palliative care within the healthcare system lacks clarity which adds a level of complexity to the process of transition to palliative care. This study explores the transition to the palliative care process in the acute care context of metastatic melanoma. A theoretical framework drawing on interpretive and critical traditions informs this research. The pragmatism of symbolic interactionism and the critical theory of Habermas brought a broad orientation to the research. Integration of the theoretical framework and grounded-theory methods facilitated data generation and analysis of 29 interviews with patients, family carers, and healthcare professionals. The key analytical findings depict a scope of palliative care that was uncertain for users of the system and for those working within the system. Becoming "palliative" is not a defined event; nor is there unanimity around referral to a palliative care service. As such, ambiguity and tension contribute to the difficulties involved in negotiating the transition to palliative care. Our findings point to uncertainty around the scopes of practice in the transition to palliative care. The challenge in the transition process lies in achieving greater coherency of care within an increasingly specialized healthcare system. The findings may not only inform those within a metastatic melanoma context but may contribute more broadly to palliative practices within the acute care setting.
Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and ...
Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry
Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. On average, the clinical staff rated the quality of care provided to people who die in the hospital as 'good' (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff. 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.
In this study, a hematology/oncology computerized discharge database was qualitatively and quantitatively reviewed using an empirical methodology. The goal was to identify potential patients for admission to a planned acute-care, palliative medicine inpatient unit. Patients were identified by the International Classifications of Disease (ICD-9) codes. A large heterogenous population, comprising up to 40 percent of annual discharges from the Hematology/Oncology service, was identified. If management decided to add an acute-care, palliative medicine unit to the hospital, these are the patients who would benefit. The study predicted a significant change in patient profile, acuity, complexity, and resource utilization in current palliative care services. This study technique predicted the actual clinical load of the acute-care unit when it opened and was very helpful in program development. Our model predicted that 695 patients would be admitted to the acute-care palliative medicine unit in the first year of operation; 655 patients were actually admitted during this time.
Martin, Caren McHenry
While most pharmacists and other health care practitioners are familiar with the programs and philosophy of hospice, they may lack a clear understanding of palliative care. Because myths and misconceptions about palliative care abound, a review of the definitions and components of palliative care can enhance the practice of all practitioners who care for patients with chronic diseases.
Full Text Available Levofloxacin is a commonly prescribed antibiotic for managing chest and urinary tract infections in a palliative care setting. Incidence of Levofloxacin-associated anaphylaxis is rare and delirium secondary to Levofloxacin is a seldom occurrence with only few published case reports. It is an extremely rare occurrence to see this phenomenon in combination. Early identification and prompt intervention reduces both mortality and morbidity. A 17-year-old male with synovial sarcoma of right thigh with chest wall and lung metastasis and with no prior psychiatric morbidity presented to palliative medicine outpatient department with community-acquired pneumonia. He was initiated on intravenous (IV Ceftriaxone and IV Levofloxacin. Post IV Levofloxacin patient developed anaphylaxis and acute delirium necessitating IV Hydrocortisone, IV Chlorpheneramine, Oxygen and IV Haloperidol. Early detection and prompt intervention helped in complete recovery. Patient was discharged to hospice for respite after 2 days of hospitalization and then discharged home. Acute palliative care approach facilitated management of two life-threatening medical complications in a palliative care setting improving both quality and length of life.
Soares, Luiz Guilherme L; Japiassu, André M; Gomes, Lucia C; Pereira, Rogéria
Patients with complex palliative care needs can experience delayed discharge, which causes an inappropriate occupancy of hospital beds. Post-acute care facilities (PACFs) have emerged as an alternative discharge destination for some of these patients. The aim of this study was to investigate the frequency of admissions and characteristics of palliative care patients discharged from hospitals to a PACF. We conducted a retrospective analysis of PACF admissions between 2014 and 2016 that were linked to hospital discharge reports and electronic health records, to gather information about hospital-to-PACF transitions. In total, 205 consecutive patients were discharged from 6 different hospitals to our PACF. Palliative care patients were involved in 32% (n = 67) of these discharges. The most common conditions were terminal cancer (n = 42, 63%), advanced dementia (n = 17, 25%), and stroke (n = 5, 8%). During acute hospital stays, patients with cancer had significant shorter lengths of stay (13 vs 99 days, P = .004), a lower use of intensive care services (2% vs 64%, P care. Further studies are necessary to understand the trajectory of posthospitalized patients with life-limiting illnesses and what factors influence their decision to choose a PACF as a discharge destination and place of death. We advocate that palliative care should be integrated into the portfolio of post-acute services.
Carpenter, Joan G
Although palliative care consultation teams are common in U.S. hospitals, follow up and outcomes of consultations for frail older adults discharged to nursing facilities are unclear. To summarize and critique research on the care of patients discharged to nursing facilities following a hospital-based palliative care consult, a systematic search of PubMed, CINAHL, Ageline, and PsycINFO was conducted in February 2016. Data from the articles (N = 12) were abstracted and analyzed. The results of 12 articles reflecting research conducted in five countries are presented in narrative form. Two studies focused on nurse perceptions only, three described patient/family/caregiver experiences and needs, and seven described patient-focused outcomes. Collectively, these articles demonstrate that disruption in palliative care service on hospital discharge and nursing facility admission may result in high symptom burden, poor communication, and inadequate coordination of care. High mortality was also noted. [Res Gerontol Nurs. 2017; 10(1):25-34.].
Full Text Available Introduction: The Ramsay Hunt syndrome is characterized by combination of herpes infection and lower motor neuron type of facial nerve palsy. The disease is caused by a reactivation of Varicella Zoster virus and can be unrepresentative since the herpetic lesions may not be always be present (zoster sine herpete and might mimic other severe neurological illnesses. Case Report: A 63-year-old man known case of carcinoma of gall bladder with liver metastases, post surgery and chemotherapy with no scope for further disease modifying treatment, was referred to palliative care unit for best supportive care. He was on regular analgesics and other supportive treatment. He presented to Palliative Medicine outpatient with 3 days history of ipsilateral facial pain of neuropathic character, otalgia, diffuse vesciculo-papular rash over ophthalmic and maxillary divisions of left trigeminal nerve distribution of face and ear, and was associated with secondary bacterial infection and unilateral facial edema. He was clinically diagnosed to have Herpes Zoster with superadded bacterial infection. He was treated with tablet Valacyclovir 500 mg four times a day, Acyclovir cream for local application, Acyclovir eye ointment for prophylactic treatment of Herpetic Keratitis, low dose of Prednisolone, oral Amoxicillin and Clindamycin for 7 days, and Pregabalin 150 mg per day. After 7 days of treatment, the rash and vesicles had completely resolved and good improvement of pain and other symptoms were noted. Conclusion: Management of acute infections and its associated complications in an acute palliative care setting improves both quality and length of life.
Full Text Available Abstract Background Continual collaboration between physicians and hospital-based palliative care teams represents a very important contributor to focusing on patients' symptoms and maintaining their quality of life during all stages of their illness. However, the traditionally late introduction of palliative care has caused misconceptions about hospital-based palliative care teams (PCTs among patients and general physicians in Japan. The objective of this study is to identify the factors related to physicians' attitudes toward continual collaboration with hospital-based PCTs. Methods This cross-sectional anonymous questionnaire-based survey was conducted to clarify physicians' attitudes toward continual collaboration with PCTs and to describe the factors that contribute to such attitudes. We surveyed 339 full-time physicians, including interns, employed in a general acute-care hospital in an urban area in Japan; the response rate was 53% (N = 155. We assessed the basic characteristics, experience, knowledge, and education of respondents. Multiple logistic regression analysis was used to determine the main factors affecting the physicians' attitudes toward PCTs. Results We found that the physicians who were aware of the World Health Organization (WHO analgesic ladder were 6.7 times (OR = 6.7, 95% CI = 1.98-25.79 more likely to want to treat and care for their patients in collaboration with the hospital-based PCTs than were those physicians without such awareness. Conclusion Basic knowledge of palliative care is important in promoting physicians' positive attitudes toward collaboration with hospital-based PCTs.
Damani, Anuja; Ghoshal, Arunangshu; Salins, Naveen; Deodhar, Jayita; Muckaden, Mary Ann
Hemichorea hemiballismus (HCHB) is a rare and debilitating presentation of hyperglycemia and subcortical stroke. Early identification, proper assessment and management of HCHB can lead to complete symptom relief. We describe a case of HCHB presenting to a palliative care setting. A 63-year-old diabetic and hypertensive lady, with history of ovarian cancer presented to Palliative Medicine outpatient clinic with two days history of right HCHB. Blood investigations and brain imaging showed high blood sugar levels and lacunar subcortical stroke. Blood sugar levels were controlled with human insulin and Aspirin. Clopidogrel and Atorvastatin were prescribed for the management of lacunar stroke. HCHB reduced markedly post-treatment, leading to significant reduction in morbidity and improvement in quality of life. The symptoms completely resolved within one week of starting the treatment and the patient was kept on regular home and outpatient follow up for further monitoring. Acute palliative care (APC) approach deals with the management of comorbidities and their complications along with supportive care. Prompt assessment and management of such complications lead to better patient outcomes.
Full Text Available Hemichorea hemiballismus (HCHB is a rare and debilitating presentation of hyperglycemia and subcortical stroke. Early identification, proper assessment and management of HCHB can lead to complete symptom relief. We describe a case of HCHB presenting to a palliative care setting. A 63-year-old diabetic and hypertensive lady, with history of ovarian cancer presented to Palliative Medicine outpatient clinic with two days history of right HCHB. Blood investigations and brain imaging showed high blood sugar levels and lacunar subcortical stroke. Blood sugar levels were controlled with human insulin and Aspirin. Clopidogrel and Atorvastatin were prescribed for the management of lacunar stroke. HCHB reduced markedly post-treatment, leading to significant reduction in morbidity and improvement in quality of life. The symptoms completely resolved within one week of starting the treatment and the patient was kept on regular home and outpatient follow up for further monitoring. Acute palliative care (APC approach deals with the management of comorbidities and their complications along with supportive care. Prompt assessment and management of such complications lead to better patient outcomes.
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
Lagman, Ruth L; Walsh, Declan; Davis, Mellar P; Young, Brett
The All Patient Refined-Diagnostic Related Group (APR-DRG) is a modification of the traditional DRG that adds four classes of illness severity and four classes of mortality risk. The APR-DRG is a more accurate assessment of the complexity of care. When individuals with advanced illness are admitted to an acute inpatient palliative medicine unit, there may be a perception that they receive less intense acute care. Most of these patients, however, are multisymptomatic, have several comorbidities, and are older. For all patients admitted to the unit, a guide was followed by staff physicians to document clinical information that included the site(s) of malignancy, site(s) of metastases, disease complications, disease-related symptoms, and comorbidities. We then prospectively compared DRGs, APR-DRGs, and case mix index (CMI) from January 1-June 30, 2003, and February 1-July 31,2004, before and after the use of the guide. The overall mean severity of illness (ASOI) increased by 25% (P < 0.05). The mean CMI increased by 12% (P < 0.05). The average length of stay over the same period increased slightly from 8.97 to 9.56 days. Systematic documentation of clinical findings using a specific tool for patients admitted to an acute inpatient palliative medicine unit based on APR-DRG classifications captured a higher severity of illness and may better reflect resource utilization.
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......, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred......-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data: In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer...
Burton, M Caroline; Warren, Mark; Cha, Stephen S; Stevens, Maria; Blommer, Megan; Kung, Simon; Lapid, Maria I
Identifying patients who will benefit from a palliative care approach is the first critical step in integrating palliative with curative therapy. Criteria are established that identify hospitalized medical patients who are near end of life, yet there are no criteria with respect to hospitalized patients with psychiatric disorders. The records of 276 consecutive patients admitted to a dedicated inpatient psychiatric unit were reviewed to identify prognostic criteria predictive of mortality. Mortality predictors were 2 or more admissions in the past year (P = .0114) and older age (P = .0006). Twenty-two percent of patients met National Hospice and Palliative Care Organization noncancer criteria for dementia. Palliative care intervention should be considered when treating inpatients with psychiatric disorders, especially older patients who have a previous hospitalization or history of dementia.
Provinciali, Leandro; Tarquini, Daniela; De Falco, Fabrizio A; Carlini, Giulia; Zappia, Mario; Toni, Danilo
Palliative care in neurology is characterized by the need of taking into account some distinguishing features which supplement and often differ from the general palliative approach to cancer or to severe organ failures. Such position is emphasized by a new concept of palliative assistance which is not limited to the "end of life" stage, as it was the traditional one, but is applied along the entire course of progressive, life-limiting, and disabling conditions. There are various reasons accounting for a differentiation of palliative care in neurology and for the development of specific expertise; the long duration of the advanced stages of many neurological diseases and the distinguishing features of some clinical problems (cognitive disorders, psychic disorders, etc.), in addition to the deterioration of some general aspects (nutrition, etc.), make the general criteria adopted for cancer, severe respiratory, hepatic or renal failures and heart failure inadequate. The neurological diseases which could benefit from the development of a specific palliative approach are dementia, cerebrovascular diseases, movement disorders, neuromuscular diseases, severe traumatic brain injury, brain cancers and multiple sclerosis, as well as less frequent conditions. The growing literature on palliative care in neurology provides evidence of the neurological community's increasing interest in taking care of the advanced and terminal stages of nervous system diseases, thus encouraging research, training and updating in such direction. This document aims to underline the specific neurological requirements concerning the palliative assistance.
Gorman, Rosemary D
Improved quality of life, care consistent with patient goals of care, and decreased health care spending are benefits of palliative care. Palliative care is appropriate for anyone with a serious illness. Advances in technology and pharmaceuticals have resulted in increasing numbers of seriously ill individuals, many with a high symptom burden. The numbers of individuals who could benefit from palliative care far outweighs the number of palliative care specialists. To integrate palliative care into primary care it is essential that resources are available to improve generalist palliative care skills, identify appropriate patients and refer complex patients to specialist palliative care providers.
Full Text Available Abstract The WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family. Its purpose is to improve the quality of life of young patients and their families, and in the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. In daily practice, it is clear that pediatric patients experience all the clinical, psychological, ethical and spiritual problems that severe, irreversible disease and death entail. The international literature indicates a prevalence of incurable disease annually affecting 10/10,000 young people from 0 to 19 years old, with an annual mortality rate of 1/10,000 young people from birth to 17 years old. The needs of this category of patients, recorded in investigations conducted in various parts of the world, reveal much the same picture despite geographical, cultural, organizational and social differences, particularly as concerns their wish to be treated at home and the demand for better communications between the professionals involved in their care and a greater availability of support services. Different patient care models have been tested in Italy and abroad, two of institutional type (with children staying in hospitals for treating acute disease or in pediatric hospices and two based at home (the so-called home-based hospitalization and integrated home-based care programs. Professional expertise, training, research and organization provide the essential foundations for coping with a situation that is all too often underestimated and neglected.
... Catalogue Membership Brochure Join CAPC Central Registry National Palliative Care Registry™ Enter your data to improve performance, prove ... Members Only) Identifying the Right Patients for Specialty Palliative Care Webinar Amy Kelley, MD and Arta Bakshandeh, DO, ...
Full Text Available Mogens Groenvold,1,2 Mathilde Adsersen,1 Maiken Bang Hansen1 1The Danish Palliative Care Database (DPD Secretariat, Research Unit, Department of Palliative Medicine, Bispebjerg Hospital, 2Department of Public Health, University of Copenhagen, Copenhagen, Denmark 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 in Denmark referred to and/or in contact with SPC after January 1, 2010. Main variables: The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1 referred and eligible patients who were actually admitted to SPC, 2 patients who waited <10 days before admission to SPC, 3 patients who died from cancer and who obtained contact with SPC, 4 patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5 patients who were discussed at a multidisciplinary conference. Descriptive data: In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100% referred to SPC were registered in DPD. In total, 41,104 unique cancer 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
Gavazzi, Antonello; Svanoni, Fausto; De Maria, Renata
The natural history of heart failure (HF) is characterized by a progressive decline in functional capacity, punctuated by acute heart destabilization episodes which contribute to a spiraling worsening course. Advanced HF affects one in four patients who are referred to the hospital for the syndrome and has an estimated yearly incidence of 12 000 new cases in Italy. Life expectancy is very limited, and in general less than 50% of advanced HF patients are alive at 1-2 years. Advanced HF patients show a high, not modifiable mortality, severe symptoms and impaired quality of life. Treatment goals should focus on the improvement of symptoms and quality of life, the aims of palliative care. Palliative consultations during hospital admissions reduce the number of interventions and procedures in the last stages of life, the length of stay in the intensive care unit and general ward. HF patients who receive home palliative care are more likely to die at home, in accordance with their expressed will. The research project RF-MAR-2007-67955 aims to analyze, through a prospective observational registry, the palliative care needs of HF patients in Italy, to answer the gaps in knowledge on symptom changes during the terminal stages of the disease, on the quality of communication between healthcare professionals, patients and their families and caregivers' needs.
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.
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....
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.
Bergenholtz, Heidi; Jarlbæk, Lene; Hølge-Hazelton, Bibi
Background: It can be challenging to provide generalist palliative care in hospitals, owing to difficulties in integrating disease-orientedtreatment with palliative care and the influences of cultural and organisational conditions. However, knowledge on the interactionsthat occur is sparse. Aim......: To investigate the interactions between organisation and culture as conditions for integrated palliative care in hospital and, ifpossible, to suggest workable solutions for the provision of generalist palliative care. Design: A convergent parallel mixed-methods design was chosen using two independent studies...... hospital with 29 department managements and one hospital management. Results: Two overall themes emerged: (1) ‘generalist palliative care as a priority at the hospital’, suggesting contrasting issues regardingprioritisation of palliative care at different organisational levels, and (2) ‘knowledge and use...
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.
The frequently asked question, 'Why do minority ethnic groups not access palliative care?' needs closer analysis. This article sets out to revisit the context and principles of palliative care and discuss why palliative care services are not accessed equally by all cultural groups in western, particularly UK, society. The conceptual basis of culture, together with cultural diversity, will be discussed to foster greater understanding of multiculturalism with a view to offering recommendations for the provision of culturally sensitive palliative care. These recommendations will seek to be challenging but realistic, both for practitioners providing such care and for educationalist disseminating 'knowledge'. I will highlight what I believe are the challenges of providing palliative care that is acceptable to minority ethnic groups based on personal experience and literature, and emphasize that these challenges should be seen as potential opportunities. It is hoped that this article will set a platform for honest and open discussion about the way forward in providing culturally sensitive palliative care for minority ethic groups. I will pose a challenging call to all members of minority ethnic groups to adopt a more proactive approach to their own care by preparing themselves to be in an influential position in palliative care provision through academic and clinical endeavours.
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.
"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.
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.
This project was done at specialist cancer hospital in Qatar. At a haematology-oncology inpatient department most patients were not getting access to palliative care unless they were at the very end stages of life. Data collected from 2008-2011 showed significant numbers of patients were dying within one month of their transfer to palliative care. There was no standard measure to identify the prospective palliative care patients. A multidisciplinary team developed a Palliative care referral screening tool based on the National Cancer Care Network guideline. Retrospective medical record review done from January to April 2012 showed a mean of 68% of patients who scored more than five were not consulted, 32% of patients who scored more than seven were not transferred to palliative care and seven percent died without any referral. The team used various kinds of quality planning, analysis and improvement tools in the form of process mapping, value analysis, Fish Bone diagrams, stakeholders' analysis and communication, physician survey, "Pareto's principal" (80 / 20 rule, the law of vital few) and other data collection tools. The palliative care referral process was standardised by preparing and implementing an objective scoring tool based on international best practice. It changed the referral culture and helped manage the psychological barriers of patients, families and caregivers. Extensive orientation and education of all key stakeholders was implemented. Monthly auditing of patient records was carried out. The aim has been achieved, exceeded and sustained, and we reduced the percentage of patients who scored more than five without palliative consultation from a mean of 68% to 16% and those who scored more than seven without palliative care transfer from a mean of thirty two percent to three percent, after four months of the project's implementation. Standardising the referral process and creating an objective referral tool is needed to facilitate safe, collaborative
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 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...... 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....
Lentz, Judy C
Walking the journey of serious illness is very difficult and stressful for patients and families. A universal principle of palliative care is caring for the patient/ family unit. This article introduces a model for the Palliative Care Doula for experienced and advanced practice palliative care nurses to support patients and families during the traumatic and vulnerable period of end-of-life care.
A specific set of assessment scales can underpin the management of distressing symptoms of patients requiring palliative care. A research assistant supported nurses working in a rural hospital setting during the introduction of these scales. A secondary analysis was conducted to further explore the qualitative data of a previously reported mixed-method study. In particular, the experiences of nurses working alongside a research assistant in the facilitation of using a new assessment form. Purposeful sampling was employed: participating nurses were invited to attend one of three focus group meetings. Data analysis revealed three main themes: a contact person, coach/mentor and extra help initiatives. Three to four subthemes corresponded with each main theme. Findings suggest nurses benefit from having someone to assist in learning about new documentation. Nurses respond positively to mentorship and practical guidance when integrating a new assessment form into routine evidence-based practice.
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Langlois, John P
Reducing suffering and helping patients to control their symptoms are key components of palliative care. This commentary will offer a comprehensive definition of palliative care and will present a case history to illustrate how palliative care can benefit patients with chronic pain.
Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C
Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet, these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social, and spiritual well-being and quality of life. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. The objective of this article was to describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. We propose a research agenda to address these gaps and provide a road map for future investigation.
Lowe, Emma; Hanchanale, Sarika; Hurlow, Adam
Pain management requires a multimodal approach involving pharmacological and non-pharmacological strategies. It is important to take a detailed history and examine the patient before prescribing any analgesia. This article focuses on assessment and management of pain in palliative care patients.
Selwyn, Peter A
As a physician working in palliative care, the author is often privileged to share special moments with patients and their families at the end of life. This haiku poem recalls one such moment in that precious space between life and death, as an elderly woman, surrounded by her adult daughters, takes her last breath. (PsycINFO Database Record
Cohen, Lewis M; Moss, Alvin H; Weisbord, Steven D; Germain, Michael J
Patients with chronic kidney disease have a shortened life expectancy and carry a high symptom burden. Clinicians need sophisticated expertise in pain and symptom management and skills in communication to meet the many needs of this population. This article reviews the literature and discusses prognosis, ethical and legal considerations, symptoms, treatment, and end-of-life issues. The field of nephrology is shifting from an exclusive focus on increasing survival to one that provides greater attention to quality of life. There is an opportunity to integrate many of the advances of palliative medicine into the comprehensive treatment of these patients.
Hänninen, Juha; Hamunen, Katri; Laakkonen, Marja-Liisa; Laukkala, Tanja; Lehto, Juho; Matila, Ari; Rahko, Eeva; Saarto, Tiina; Tohmo, Harri; Vuorinen, Eero
The updated Current Care Guideline focuses on medical symptom treatment when curative treatment is no longer possible. Palliative care should be available to all dying patients at all health care levels. Pain should be treated prophylactically. Opioids are effective in cancer pain and should be chosen for moderate or severe pain in line with the WHO pain ladder. Treatment options for symptoms which call for acute interventions, such as intracranial hypertension, and options for dyspnoea, delirium, gastro-intestinal symptoms, ascites, dehydration and end-of-life treatment of elderly and demented patients are described.
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.
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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.
Dale, Barbara; Emmons, Kevin R
Home care nursing occurs in a complex care environment. Nurses working in this setting care for a wide array of individuals who often are sicker and more complex than ever before. The high prevalence of wounds among these individuals requires that home care nurses have a certain level of knowledge to provide excellent care. Many times, individuals with wounds do not have the capacity to heal or are burdened with numerous symptoms affecting quality of life. In these cases, the home care nurse must understand concepts of palliative wound care to alleviate symptoms with the goal of improving quality of life.
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.
Wiebe, Lauren A; Von Roenn, Jamie H
The interdisciplinary team is fundamental to the successful delivery of quality palliative care. Ideally, the oncologist is an integral part of either the palliative care or hospice team and serves to maintain continuity of care through the end of life. In the United States, barriers can complicate the oncologist's easy integration into the hospice team as patients often remain at home. Also, there may be philosophical or clinical practice differences between oncology and palliative care at first glance. This article focuses on ways to overcome these potential obstacles and use differences in training to strengthen the team's impact. A significant part of oncology practice includes managing difficult symptoms, mitigating suffering, and discussing priorities of care--all elements of palliative medicine that oncologists perform daily. Participating on a palliative care team may be natural for oncologists, and some might elect to provide integrated palliative cancer care for patients throughout the course of their disease and at the end of life. Thus, there is a need to enrich the general oncologist's knowledge of specialized palliative medicine, as recommended by the major cancer organizations, including the American Society of Clinical Oncology and the European Society of Medical Oncology.It is important to know when to incorporate a palliative or hospice care team into the routine management of a cancer patient and what benefits these referrals can provide. Oncologists have an obligation to provide high-quality palliative care to all patients in an integrated fashion, including patients with advanced cancer enrolled in clinical trials for early therapeutics.
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... chaplains, and counselors. Support may involve art and music therapists, home health aides, nutritionists, and respite care providers. How does palliative care help children and their families? A child’s serious illness affects the entire family. Pediatric palliative care can support ...
Murphy, Edel; Froggatt, Katherine; Connolly, Sheelah; O'Shea, Eamon; Sampson, Elizabeth L; Casey, Dympna; Devane, Declan
included studies. Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy. We resolved any disagreement through discussion or, when required, consulted with the rest of the review team. We independently extracted data and conducted assessment of methodological quality, using standard Cochrane methods. We identified two studies of palliative care interventions for people with advanced dementia. We did not pool data due to the heterogeneity between the two trials in terms of the interventions and the settings. The two studies measured 31 different outcomes, yet they did not measure the same outcome. There are six ongoing studies that we expect to include in future versions of this review.Both studies were at high risk of bias, in part because blinding was not possible. This and small sample sizes meant that the overall certainty of all the evidence was very low.One individually randomised RCT (99 participants) evaluated the effect of a palliative care team for people with advanced dementia hospitalised for an acute illness. While this trial reported that a palliative care plan was more likely to be developed for participants in the intervention group (risk ratio (RR) 5.84, 95% confidence interval (CI) 1.37 to 25.02), the plan was only adopted for two participants, both in the intervention group, while in hospital. The palliative care plan was more likely to be available on discharge in the intervention group (RR 4.50, 95% CI 1.03 to 19.75). We found no evidence that the intervention affected mortality in hospital (RR 1.06, 95% CI 0.53 to 2.13), decisions to forgo cardiopulmonary resuscitation in hospital or the clinical care provided during hospital admission, but for the latter, event rates were low and the results were associated with a lot of uncertainty.One cluster RCT (256 participants, each enrolled with a family carer) evaluated the effect of a decision aid on end-of-life feeding options on
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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 psychos
Lilly, Evan J; Senderovich, Helen
Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development. Crown Copyright © 2016. Published by Elsevier Inc. All rights reserved.
An article about the growth of palliative care, a medical subspecialty that has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care.
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.)
Pressure sore prevention in palliative care is recognized as being an essential element of holistic care, with the primary goal of promoting quality of life for patient and family. Little is known about the incidence of pressure sore development and the use of pressure sore risk assessment tools in palliative care settings. The development of a risk assessment tool specifically for palliative care patients in a 41-bedded specialist palliative care unit is described. The risk assessment tool was developed as part of a tissue viability practice development initiative. The approach adopted in the validation of the Hunters Hill Marie Curie Centre pressure sore risk assessment tool was the comparative analysis of professional judgment of experienced palliative care nurses with the numerical scores achieved during the assessment of risk on 291 patients (529 risk assessment events). This comparative analysis identified the threshold for different degrees of risk for the patient group involved: low risk, medium risk, high risk and very high risk. Further work is being undertaken to evaluate the inter-rater reliability of the new tool. A number of issues are explored in this paper in relation to pressure sore prevention in palliative care: the role of risk assessment tools, the sometimes conflicting aims of trying to ensure comfort and prevent pressure sore damage, and the uncertainties faced by palliative care nurses when they are trying to maintain quality of life for the dying.
LeBlanc, Thomas W
Palliative care specialists have had little involvement in the care of patients with hematologic malignancies. The reasons for this are not clear, because these patients certainly face a significant symptom burden, and many hematologic malignancies are either incurable or carry poor prognoses. For example, acute myeloid leukemia (AML) in patients over age 60 has a 5-year survival of less than 10%, akin to pancreatic cancer. Although most oncologists would agree with involving palliative care specialists in the case of advanced pancreatic cancer, few seem to consider this in the context of AML. Why should AML be any different?
Although many children with cancer can be cured, approximately 25 % will die of their disease. These deaths are usually anticipated and preceded by a period of palliative care focused on the end-of-life, usually referred to as the palliative phase. The PRESENCE-study was aimed at a better understand
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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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Boss, Renee D.
Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining…
Boss, Renee D.
Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining…
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
Hermsen, M.A.; Have, H.A.M.J. ten
With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and Janua
The basic principle of palliative care has evolved over time and is the historical origin of the modern hospice. WHO proposed the first definition of palliative care in 1989, and the definition was revised in 2002. These definitions have something in common. Both relieve the pain and suffering to improve QOL. Palliative care is also good for any kind of life-threatening disease, regardless of whether it requires short or long term recuperation. That also need to be able to accept equally all the people of the community. The provision of general palliative care is the responsibility of all medical, nursing, and health professionals for the welfare of all patients with life-threatening disease. Specialist palliative care is based on the basic principles of palliative care, intensive clinical training, and systematic acquisition of knowledge and skills training to support palliative care education, clinical research and training provided by the profession. It has been established by nursing and medical experts in palliative care that palliative care can provide expertise in interdisciplinary teams in different settings. It is necessary that the medical system.
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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.
Cojean, N; Strub, C; Kuhn, P; Calvel, L
The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks.
Full Text Available Organization of palliative care provided to children with oncology and other life-threatening (fatal conditions and diseases must be a compulsory part of a state pediatric healthcare service. In this article various organizational issues of the above mentioned service are being discussed.Key words: children, pediatric oncology, palliative care, organization.(Voprosy sovremennoi pediatrii — Current Pediatrics. 2011; 10 (3: 16–20
Shawawra, Mousa; Khleif, Amal Dweib
Palliative care is a very new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, Al-Sadeel Society had organized a one day workshop in Bethlehem on November 2008 for the health professionals from the governmental and non-governmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine. The general population of Palestine is approximately 2.4 millions (2007), with a life expectancy of 74.3 years of age, the death rate is 3.7 per 1000 population, having 8,910 deaths a year. Deaths due to cancer were 2,305 in five years (1999-2003), where 5,542 new cases were newly diagnosed in the same period. Health services available for cancer patients are hospital units either in patient or day care units. According to the ministry of health (MOH) statistics there are 75 beds in oncology departments in MOH hospitals; represent 2.7% of the total number of beds available, and 60 beds in daily care departments with an occupancy rate at 231.8%. There is no hospice or bereavement follow up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, but at the end of life, when the load of symptoms is high, most of the patient are care for at hospitals, and usually dye there, because the families are not able to care for their patients, and as there is no system for home care available for the Palestinian patients, and if it is available it is available in limited places and on private bases that are expensive and not affordable to the majority of patients, gross domestic product (GPD) per capita= 1,100 as 2007 estimates). We conducted a needs assessment survey within the only four facilities that provide care for the oncology patients in the West Bank and were filled by the direct health care providers. The results were expressing the fact that there is no palliative care service
Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction.
Boersma, Isabel; Jones, Jacqueline; Coughlan, Christina; Carter, Julie; Bekelman, David; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi
Palliative care for Parkinson's disease (PD) is an emerging area of interest for clinicians, patients and families. Identifying the palliative care needs of caregivers is central to developing and implementing palliative services for families affected by PD. The objective of this paper was to elicit PD caregiver needs, salient concerns, and preferences for care using a palliative care framework. 11 PD caregivers and one non-overlapping focus group (n = 4) recruited from an academic medical center and community support groups participated in qualitative semi-structured interviews. Interviews and focus group discussion were digitally recorded, transcribed and entered into ATLAS.ti for coding and analysis. We used inductive qualitative data analysis techniques to interpret responses. Caregivers desired access to emotional support and education regarding the course of PD, how to handle emergent situations (e.g. falls and psychosis) and medications. Participants discussed the immediate impact of motor and non-motor symptoms as well as concerns about the future, including: finances, living situation, and caretaking challenges in advanced disease. Caregivers commented on the impact of PD on their social life and communication issues between themselves and patient. All participants expressed interest and openness to multidisciplinary approaches for addressing these needs. Caregivers of PD patients have considerable needs that may be met through a palliative care approach. Caregivers were receptive to the idea of multidisciplinary care in order to meet these needs. Future research efforts are needed to develop and test the clinical and cost effectiveness of palliative services for PD caregivers.
Full Text Available End-of-life care is an integral part of neurology practice, and neuropalliative medicine is an emerging neurology subspeciality. This begins with serious illness communication as a protocol-based process that depends on an evaluation of patient autonomy and accurate prognostication. Communication needs vary between chronic, life-limiting neurologic illnesses and acute brain injury. In an ideal situation, the patient's wishes are spelled out in advance care plans and living wills, and surrogates have only limited choices for implementation. Palliative care prepares for decline and death as an expected outcome and focuses on improving the quality of life for both the patients and their caregivers. In the Intensive Care Unit, this may require clarity on withholding and withdrawal of treatment. In all locations of care, the emphasis is on symptom control. Neurologists are the quintessential physicians, and our “dharma” is best served by empathetically bringing our technical knowledge and communication skills into easing this final transition for our patients and their families to the best of our ability.
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.
Clark, Jennifer K; Fasciano, Karen
Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult.
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.
Hui, David; Bruera, Eduardo
Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, illness understanding, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We also discuss how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available.
Rassouli, Maryam; Sajjadi, Moosa
Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon.
May, Peter; Hynes, Geralyn; McCallion, Philip; Payne, Sheila; Larkin, Philip; McCarron, Mary
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. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.
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.
Managing pain effectively is one of the biggest challenges in medicine, let alone when dealing with the dying patient and his family. For palliative care specialists this is a daily challenge. However, ''To cure when possible, to give comfort always'' is an empty credo if physicians don't use every weapon in the medical arsenal to relieve the suffering caused by chronic pain. It's of course the opioids: morphine, heroin, their synthetic derivatives and other narcotics, a class of medications that conjure up visions of drug addiction and narcotic squads. To say that opioids are stigmatised by such allusions is putting it mildly. An unhealthy proportion of doctors and patients alike are afraid to have anything to do with them, even in when facing their final stages of life. This is particularly so in the Mediterranean society. It is here in Italy that an effort must be made to educate both physicians and the general public, an arduous task to change a long standing belief which requires a quick cultural turn around. Those who refuse opioids because they are afraid of addiction, and the doctors who refuse to prescribe them out of fear or pure unwillingness to address an apprehensive attitude on behalf of his patient, need to be better informed. Most misconceptions about opioids have to do with terminology, because words like ''morphine, addiction, dependency'' and ''tolerance'' mean entirely different things in popular and medical parlance. Add to this the perceptions and attitudes the patient can have with this terminology which then can have a profound effect on the success or failure of a pain control programme. In fact, most people think that medication such as morphine are only for people who are dying and as a consequence is synonymous with death itself. Is this why Italian physicians are not prescribing morphine even though great efforts have been made recently by the Health Ministry to facilitate prescribing laws and costs? It is worthy of serious
Full Text Available Palliative aged care is rapidly developing as a specialty area, involving the collaboration and combined expertise of the fields of gerontology, geriatric care, and palliative care. The similarities and differences between these fields provide rich ground for complementing and informing each other's practice and perspectives and in working together to develop health and social policy, which acknowledge the unique factors distinguishing the experience of many elderly people with life-limiting illness. In recent years, two significant projects have been initiated in Australia: (1 the Australian Palliative Residential Aged Care Project (APRAC, which developed evidence-based guidelines for palliative aged care; and (2 the joint development of a postgraduate online program in Palliative Care in Aged Care, by the Department of Palliative and Supportive Services and the Centre for Ageing Studies, a WHO Collaborating Centre, both of Flinders University, Adelaide. Both projects have reconciled the paradigms, philosophies, and evidence-based knowledge of both palliative care and aged care to create for the first time a set of guidelines and an educational program, which will inform and influence the development of practice in this important and developing clinical area.
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.
Harrison, Kerry; Watson, Sarah
The National Service Framework for Renal Services Part 2 identifies quality requirements for end-of-life care for individuals with kidney failure, recognizing the potential to forge closer relationships between renal and specialist palliative care providers. This article describes a pilot project set up by two Clinical Nurse Specialists, one working in hospice specialist palliative care and the other in renal palliative care within an acute trust. The purpose of the pilot was to work in collaboration to run a streamlined nurse-led clinic that would meet the palliative care needs of chronic kidney disease (CKD) Stage 5 patients and their carers. To achieve this the clinic would have to provide optimal symptom management, empower patients to make their own choices, and support them with advance care planning underpinned by the End of Life Care Strategy. The partnership also aimed to promote service improvement and practice development using transference of knowledge, skills, and expertise. Initial informal feedback, including a very small patient survey, suggests that the clinic was well received by patients, carers, and other health professionals. The clinic is ongoing and deserves more formal evaluation to encourage future service development.
da Silva, Karen Schein; Kruse, Maria Henriqueta Luce
Palliative care is becoming a professional knowledge and performance field by means of the proposal of another "regimen of truths". Such fact can be observed in the broadening of palliative care services and in the increase of publications on the subject. This study aims at learning the discourses on palliative care that the nurses have conveyed in the nursing publications. For such purpose we approached the Cultural Studies, especially those inspired on Michel Foucault in order to analyze articles published in two national nursing periodicals from 1999 to 2007. Among the statements, we point out those that see the hospital as a site where the patient is divested of his individuality and identity and those that mention such care as capable of providing the family and the patient with the best quality of life possible during the death process.
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.
Froggatt, Katherine; Payne, Sheila; Morbey, Hazel; Edwards, Michaela; Finne-Soveri, Harriet; Gambassi, Giovanni; Pasman, H Roeline; Szczerbińska, Katarzyna; Van den Block, Lieve
-quality palliative care in care homes is supported by implementation activity at these 3 levels. Understanding where each country is in terms of activity at these 3 levels (macro, meso, and micro) will allow strategic focus on future implementation work in each country. Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
Carmen Matoses Chirivella
Full Text Available Objective: Develop a guide that compiles all the information available in the literature for healthcare staff on the administration of drugs subcutaneously in palliative care patients of the Hospital Unit of home. Method: It is designed a summary table of drugs likely to be administered subcutaneously in palliative care patients through the revision of the technical reports of the manufacturers and other literature published by scientific organizations, in addition to the literature search on Pubmed® and Micromedex®. Results: We have reviewed 65 drugs and a guide has been developed of recommendations depending on whether there is information of his administration by subcutaneous or, if on the contrary, its use is contraindicated. Conclusions: Although mainly manufacturers laboratories do not have data, information collected in this guide will allow the management of the subcutaneous route of some of the most commonly used medications in palliative care
Claxton-Oldfield, Stephen; Hastings, Emily; Claxton-Oldfield, Jane
A total of 50 nurses (hospital and home care) responded to a survey designed to measure: (1) their attitudes toward, and knowledge of, hospice palliative care volunteers; (2) the types of tasks they felt it was appropriate for volunteers to perform; and (3) how valuable they felt different members of the hospice palliative care team are. In addition, they were asked to respond to some open-ended questions (eg, "Do you feel that it is appropriate for hospice palliative care volunteers to know patient medical information?"). The nurses' responses to the "Attitude/Knowledge" part of the survey revealed that they generally held positive attitudes toward volunteers. The majority of the nurses felt that it was appropriate for volunteers to perform most of the tasks listed, except for hands-on patient care. Nurses rated the value of nurses, family members, doctors, and pharmacists significantly higher than volunteers. Fifty-three percent of the nurses felt that volunteers should know patient medical information, and 77% thought that volunteers should have the opportunity to provide input regarding patient care. Also, 75% of the nurses felt that volunteers made their jobs easier, and 56% felt that volunteers should be included in team meetings. When asked to list the topics covered in a hospice palliative care volunteer training program, 73% of the nurses indicated that they were not sure or did not know what topics were covered, indicating a lack of knowledge regarding volunteer training.
Gaskins, Jessica L
Palliative care is not a term solely used for humans when discussing health care; the term is also used when discussing veterinary patients. Pets are considered part of the family by pet owners, and they have a special relationship that only another pet owner can fully understand. This article discusses some of the healthcare problems that affect pets (and their owners), statistics on the most commonly used medications for veterinary patients, quality of life, and discussions on the veterinary pharmacist-owner-palliative pet relationship and how compounding pharmacists can prepare patient-specific medications.
Codeine is designated as one of the essential medicines of palliative care for symptoms such as pain and diarrhea. Essential drugs for palliative care are drugs that are effective for the treatment of common symptoms in palliative medicine, easily available, and are affordable. Codeine is recommended for the management of mild to moderate pain and is available as a combination product or as a stand-alone opioid. It is a prodrug and exhibits an affinity to micro-opioid receptors 200 times lower than morphine. Codeine is metabolized in the liver to inactive metabolites, which account for 90 percent of the transformed product, and morphine, which accounts for 10 percent of the transformed product and provides the main analgesic effect. The production of morphine is dependent on cytochrome oxidase 2D6 enzyme activity, which may not be fully active in some populations. The purpose of this review is to examine the efficacy of codeine for common symptoms encountered in palliative medicine, which has led to its designation as an essential medicine for palliative care.
Kettler, Dietrich; Nauck, Friedemann
To summarize various developments related to palliative care, especially related to ethical issues. To emphasize the involvement of anaesthesiology in palliative care. Euthanasia has been legalized in Belgium, the Netherlands and Luxemburg (BENELUX countries). A group from Belgium has now proposed using euthanasia in patients in whom palliative care has been deemed 'futile'. This practice of so-called 'integral palliative care' is strongly rejected in a study from Germany. Palliative sedation is an ethically different approach with no intention to kill the patient. The European Association of Palliative Care has proposed a framework for individual guidelines for palliative sedation. The important role of anaesthesiology in palliative care teams is emphasized. Palliative care is a powerful approach to patient care during terminal illness, emphasizing quality of life even if it may shorten the length of life. Traditionally, palliative care has been contrasted with active euthanasia, but a group from Belgium has challenged this concept recently, advocating the use of euthanasia in circumstances in which palliative care has become 'futile'. This new approach led to strong reactions by a group from Germany, stressing that killing on demand in palliative care should under no circumstances be justified. In contrast, palliative sedation is a common method in special cases to reduce intractable symptoms. A new framework for palliative sedation produced by the European Association of Palliative Care may encourage institutions to set up their own palliative sedation guidelines. Worldwide, anaesthesiologists have a significant role in palliative care due to their unique complex expertise mainly in pain therapy and including transient sedation of patients.
Supportive and palliative care research includes studies to prevent or treat the acute and chronic symptoms and morbidities related to cancer and its treatment, and to examine the effects of cancer and its treatment on quality of life and psychosocial issues and treatment strategies at the end of life. Active Projects can range from caregiver issues to geriatrics, physical functioning to cognitive dysfunction. | Examining symptoms and morbidities related to cancer, its treatment, quality of life and end of life.
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 pr
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
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.
Adriaansen, M.J.M.; Achterberg, T. van
This article describes a methodological study concerning the development of a test instrument that can be used for measuring the effects of a course in palliative care on registered nurses and licensed practical nurses. This test instrument is comprised of two parts: an expertise and insight test an
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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
Adriaansen, M.J.M.; Achterberg, T. van
This article describes a methodological study concerning the development of a test instrument that can be used for measuring the effects of a course in palliative care on registered nurses and licensed practical nurses. This test instrument is comprised of two parts: an expertise and insight test
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A personal view made in light of the recent news article regarding a husband wanting to sue Addenbrooke's hospital over a Do Not Attempt Resuscitation decision. This article aims to highlight how the rolling out of cross boundary palliative care registers may be more at risk of infringing human rights.
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Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu
We conducted home care and home palliative care from the department of home care. We provided home care services to 190 patients(105 men, 85 women)in October 2013. Their average age was 78.7(range: 32-102)years old, and home care had been underway from 1 day to 8 years, 10 months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff.
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.
Coulibaly, J Didi-Kouko; Datie, A-M; Binlin-Dadie, R; Kouame, I; N'guessan, Zc; Barouan, M-C; Koffi, E; Coulibaly, I; Mensah, J; Yenou, H Memain; Dedomey, E; Echimane, Ka; Plo, Kj; Kouassi, B
Ivory Coast adhered to the strategy of the primary cares of health whose leading principles served basis to the definition of the National politics of sanitary development, exposed in the National plan of sanitary development 1996-2005. The improvement of the quality of the cares is the main objective of this plan. The attack of this objective cannot make itself without the hold in account of the palliative cares that are a component of the cares for the patients affected by chronic and incurable affections, since the diagnosis until the death and even after the death. Conscious of the necessity to develop the palliative cares to improve the quality of life of the patients and their families, the ministry in charge of health, in collaboration with the partners to the development, initiated a project of development of the palliative care in Ivory Coast. It is about an innovating gait in Ivory Coast concerning politics of health. This work has for goal to present the big lines and the setting in which this politics has been put in place.
Full Text Available Introduction: Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description: The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion: Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion: Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management.
Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon; Vasinanukorn, Mayuree; Phungrassami, Temsak
The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal setting and care planning (39.0%), teamwork (38.7%), and pain management (32.7%). Both medical students and instructors reflected that palliative care education was important as it helps to improve quality of care and professional competence. The percentage of students confident to provide palliative care services under supervision of their senior, those able to provide services on their own, and those not confident to provide palliative care services were 57.3%, 33.3%, and 9.4%, respectively. The lack of knowledge in palliative care in students may lower their level of confidence to practice palliative care. In order to prepare students to achieve a basic level of competency in palliative care, each medical school has to carefully put palliative care content into the undergraduate curriculum.
Lopez-Acevedo, Micael; Lowery, William J; Lowery, Ashlei W; Lee, Paula S; Havrilesky, Laura J
Despite the increasing availability of palliative care, oncology providers often misunderstand and underutilize these resources. The goals of palliative care are relief of suffering and provision of the best possible quality of life for both the patient and her family, regardless of where she is in the natural history of her disease. Lack of understanding and awareness of the services provided by palliative care physicians underlie barriers to referral. Oncologic providers spend a significant amount of time palliating the symptoms of cancer and its treatment; involvement of specialty palliative care providers can assist in managing the complex patient. Patients with gynecologic malignancies remain an ideal population for palliative care intervention. This review of the literature explores the current state of palliative care in the treatment of gynecologic cancers and its implications for the quality and cost of this treatment.
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.
Julião, Miguel; Barbosa, António
Depression is the most common mental health problem in palliative care, yet it's widely misunderstood, underdiagnosed, undertreated and considered a complex medical task. Psychological distress is a major cause of suffering among patients and families and it's highly correlated with reduced quality of life and amplification of pain. Terminally-ill individuals who suffer from depression are also at high risk of suicide and desire for a hastened death. Every patient receiving palliative care should receive a complete personal and familial psychiatric history, with risk factors, as well as the typical signs and symptoms in the terminal disease. There are two different approaches to assess depression in palliative care: Categorial vs Dimensional The Hospital Anxiety and Depression Scale (HADS) is the most used assessment method for depression in advanced disease and it's validated to the Portuguese population. HADS overcomes the biggest problem when evaluating depression in the terminally-ill: the influence of somatic symptoms due to the underlying disease on the results of the depression scales. In this article we revise other approaches for the assessment of depression in advanced disease: single question vs two-item question; structured clinical interview and diagnostic criteria. Clinicians who care for terminally-ill patients must develop competences on the psychological area, developing state-of-the-art clinical skills that provide quality of life and comfort to patients and their families.
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
Fernanda Laporti Seredynskyj
Full Text Available The present study aimed at understanding the perception of older adults who are receiving palliative oncological care on self care in relation to different stages of the disease and how such perception affected their lives. This is a qualitative study using oral history conducted with 15 older adults receiving palliative chemotherapy treatment in a health institution. The following categories emerged: social network, perspectives for confronting life, changes and spirituality. It is necessary for nursing staff to understand this process so that the measures implemented take into account all of the implications of the disease and aim at improving quality of life. doi: 10.5216/ree.v16i2.22795.
Shaw, Clare; Eldridge, Lucy
Many palliative care patients experience nutritional problems as their conditions progress. This includes those with progressive neurological conditions, chronic obstructive pulmonary disease (COPD) as well as advanced cancer. Nutritional issues not only impact patients physically but also psychologically and can also have an effect on those caring for them. It is important that patients are screened appropriately and that one identifies what symptoms are potentially affecting their intake. Decisions should always be patient-centred. Nutritional interventions range from food modification and nutritional supplements, to more intense methods such as enteral or parenteral nutrition, and these may have ethical and legal considerations. This article explores the nutritional issues faced by palliative patients, the ethical issues supporting decision-making and the methods of nutritional support available.
Shahid, Shaouli; Bessarab, Dawn; van Schaik, Katherine D; Aoun, Samar M.; Thompson, Sandra C
Background: Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods: In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient a...
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.
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
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.
Kar, S S; Subitha, L; Iswarya, S
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification, assessment and treatment of pain, and other problems - physical, psychosocial, and spiritual. It is estimated that in India the total number of people who need palliative care is likely to be 5.4 million people a year. Though palliative care services have been in existence for many years, India ranks at the bottom of the Quality of Death index in overall score. However there has been steady progress in the past few years through community-owned palliative care services. One of the key objectives of the National Programme for prevention and control of cancer, diabetes, cardiovascular diseases, and stroke is to establish and develop capacity for palliative and rehabilitative care. Community models for the provision of home-based palliative care is possible by involving community caregivers and volunteers supervised by nurses trained in palliative care. Training of medical officers and health care professionals, and sensitization of the public through awareness campaigns are vital to improve the scope and coverage of palliative care. Process of translating palliative care plan into action requires strong leadership, competent management, political support and integration across all levels of care.
S S Kar
Full Text Available Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification, assessment and treatment of pain, and other problems – physical, psychosocial, and spiritual. It is estimated that in India the total number of people who need palliative care is likely to be 5.4 million people a year. Though palliative care services have been in existence for many years, India ranks at the bottom of the Quality of Death index in overall score. However there has been steady progress in the past few years through community-owned palliative care services. One of the key objectives of the National Programme for prevention and control of cancer, diabetes, cardiovascular diseases, and stroke is to establish and develop capacity for palliative and rehabilitative care. Community models for the provision of home-based palliative care is possible by involving community caregivers and volunteers supervised by nurses trained in palliative care. Training of medical officers and health care professionals, and sensitization of the public through awareness campaigns are vital to improve the scope and coverage of palliative care. Process of translating palliative care plan into action requires strong leadership, competent management, political support and integration across all levels of care.
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.
Juba, Katherine M
A credential is documented evidence of a pharmacist's qualifications; while credentialing is the method used to acquire, confirm, determine, and document a pharmacist's qualifications to practice. Voluntary credentials are important in clinical pharmacy specialties to ensure proficiency in caring for patients with complex pharmacotherapy needs. This article discusses current and future pharmacy pain management and palliative care credentialing opportunities. Pharmacists wishing to pursue voluntary pain management and palliative care credentialing may elect to take a multidisciplinary pain credentialing exam offered by the American Society of Pain Educators (ASPE) or American Academy of Pain Management (AAPM) and/or complete an American Society of Health System Pharmacists (ASHP) Postgraduate Year 2 (PGY2) pain management and palliative care pharmacy residency. A palliative care credentialing exam is not currently available to pharmacists. Efforts are underway within the pharmacy profession to standardize the board certification process, design a pain and palliative certificate program, and create a specialty pain management and palliative care board certification examination.
Khosla, Divya; Patel, Firuza D; Sharma, Suresh C
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.
Liossi, Christina; Anderson, Anna-Karenia; Howard, Richard F
Priority setting for healthcare research is as important as conducting the research itself because rigorous and systematic processes of priority setting can make an important contribution to the quality of research. This project aimed to prioritise clinical therapeutic uncertainties in paediatric pain and palliative care in order to encourage and inform the future research agenda and raise the profile of paediatric pain and palliative care in the United Kingdom. Clinical therapeutic uncertainties were identified and transformed into patient, intervention, comparison and outcome (PICO) format and prioritised using a modified Nominal Group Technique. Members of the Clinical Studies Group in Pain and Palliative Care within National Institute for Health Research (NIHR) Clinical Research Network (CRN)-Children took part in the prioritisation exercise. There were 11 clinically active professionals spanning across a wide range of paediatric disciplines and one parent representative. The top three research priorities related to establishing the safety and efficacy of (1) gabapentin in the management of chronic pain with neuropathic characteristics, (2) intravenous non-steroidal anti-inflammatory drugs in the management of post-operative pain in pre-schoolers and (3) different opioid formulations in the management of acute pain in children while at home. Questions about the long-term effect of psychological interventions in the management of chronic pain and various pharmacological interventions to improve pain and symptom management in palliative care were among the 'top 10' priorities. The results of prioritisation were included in the UK Database of Uncertainties about the Effects of Treatments (DUETS) database. Increased awareness of priorities and priority-setting processes should encourage clinicians and other stakeholders to engage in such exercises in the future.
Full Text Available Background: Infection with human immunodeficiency virus (HIV has changed from an acute to a chronic illness in the past decade, because of highly active antiretroviral therapy (ART. Malawi’s response to the HIV challenge included provision of ART for people living with HIV or AIDS (PLWHA, which significantly reduced HIV- and AIDS-related mortality. In addition, palliative care for PLWHA was introduced as a strategy that improves the success of ART.Objective: The purpose of the study was to explore the needs of PLWHA concerning care received from primary caregivers and palliative care nurses in Malawi.Methods: A qualitative, explorative design was used and 18 participants were selected purposefully and interviewed individually using a semi-structured interview guide. Data were analysed using NVivo software package version 10.Results: Results revealed that PLWHA needed physical care from the primary caregivers due to severity of illness, integration of healthcare services, and continuity of care and proper care from nurses. They also needed knowledge from nurses in several areas which affected decision-making and needed financial and nutritional support.Conclusion: More could be done in meeting needs of PLWHA to improve their health and survival and assist them to achieve a better quality of life.Keywords: people living with HIV/AIDS, palliative care, palliative care nurse, primary caregiver, support
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...
Cássia Regina de Paula Paz
Full Text Available Objective.Assess the need for incorporation of palliative care in primary health care (PHC through the characterization of users eligible for this type of care, enrolled in a program for devices dispensing. Methods. Descriptive study of case series conducted in 14 health units in São Paulo (Brazil in 2012. It was included medical records of those enrolled in a program for users with urinary and fecal incontinence, and it was applied Karnofsky Performance Scale Index (KPS to identify the indication of palliative care. Results. 141 of the 160 selected medical records had KPS information. Most cases (98.3%, 138/141 had performance below 70% and, therefore, patients were eligible for palliative care. The most frequent pathologies was related to chronic degenerative diseases (46.3%, followed by disorders related to quality of care during pregnancy and childbirth (24.38%. Conclusion. It is necessary to include palliative care in PHC in order to provide comprehensive, shared and humanized care to patients who need this.
de Paula Paz, Cássia Regina; Reis Pessalacia, Juliana Dias; Campos Pavone Zoboli, Elma Lourdes; Ludugério de Souza, Hieda; Ferreira Granja, Gabriela; Cabral Schveitzer, Mariana
Assess the need for incorporation of palliative care in primary health care (PHC) through the characterization of users eligible for this type of care, enrolled in a program for devices dispensing. Descriptive study of case series conducted in 14 health units in São Paulo (Brazil) in 2012. It was included medical records of those enrolled in a program for users with urinary and fecal incontinence, and it was applied Karnofsky Performance Scale Index (KPS) to identify the indication of palliative care. 141 of the 160 selected medical records had KPS information. Most cases (98.3%, 138/141) had performance below 70% and, therefore, patients were eligible for palliative care. The most frequent pathologies was related to chronic degenerative diseases (46.3%), followed by disorders related to quality of care during pregnancy and childbirth (24.38%). It is necessary to include palliative care in PHC in order to provide comprehensive, shared and humanized care to patients who need this.
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...... 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....... Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance...
Berry, Mary Judith; Saito-Benz, Maria; Klein, Tisha; Bowkett, Brendon; Richardson, Vaughan F
Complete ectopia cordis in the newborn represents a significant management challenge. There are minimal data available to inform optimal clinical care for those infants with coexisting complex congenital heart disease who are therefore not candidates for surgical intervention. The exteriorisation of the heart and absence of the pericardial sac requires meticulous wound care to prevent desiccation of the myocardium and to minimise infection risk. Additionally, the technique selected must address the risk of occlusion of the cardiac vascular pedicle and abrasion between the mobile myocardium and dressing surface. We report a novel approach to wound management and integrated palliative care that enabled community-based care. Our patient, a full-term male infant with complete ectopia cordis was born in good condition by assisted vaginal delivery. He was discharged from hospital on day 8 and was cared for in the community until his demise from cardiac failure on day 15.
Watters, Carol L; Harvey, Carol V; Meehan, Anita J; Schoenly, Lorry
Patients who face chronic, incurable, or life-ending musculoskeletal conditions often receive inadequate care either due to a lack of caregiver awareness or inattention to maintaining the highest quality at the end of life. Palliative care focuses on the comprehensive physical, psychological, social, spiritual, and existential needs of patients with life-threatening or debilitating illness. Orthopaedic nurses and all nurses in general are challenged to incorporate palliative care principles into care planned with patients and families facing end-of-life issues. This article addresses the leadership role the National Association of Orthopaedic Nurses (NAON) has taken to develop a consensus document which endorses the Last Acts Precepts of Palliative Care and affirms the need for palliative care with patients who experience life-threatening illness. A case study is used to illustrate the opportunity a multidisciplinary team has to center care on the individual, while remaining sensitive to the holistic needs of the patient for self-determination at the end of life.
Basu, Arnab; Mittag-Leffler, Barbro Norrström; Miller, Kenneth
Low- and medium-resource countries are facing a significant increase in the incidence of noncommunicable diseases such as cancer. Unfortunately, the majority of patients with cancer present with advanced disease, and disease-directed treatment may be unlikely to be effective and/or not available. Globally, there will be a growing need for palliative care services. There has been significant progress in the provision and integration of palliative care into the health care policy and systems. Nonetheless, palliative care services vary significantly between regions of the world and also between countries in the same region. Some common barriers to care include the lack of a trained workforce to provide palliative care, lack of availability of opioids or the restriction of their use, cultural attitudes of physicians and patients, and also funding. Despite these challenges, there are examples of low- and medium-resource countries that are providing excellent palliative care that is being integrated into the health care system and the cancer care continuum. This article provides an overview of the progress in providing palliative care in low- and medium-resource countries. In addition, more specific information is provided on palliative care in low-resource countries in Latin America, Asia, and Africa. Finally, a more personal perspective is presented on the development of palliative care in Ethiopia, as an example.
Palliative care services provided alongside traditional oncology care have been shown to be beneficial to patients and families. This article provides a brief history of palliative care, a pathway to implementing these services into currently established oncology programs, and a brief discussion of common barriers.
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.
Randall, F M
The relief of suffering is one of the aims of health care. Pain relief is a moral obligation in health care, not an optional extra. Doctors have moral obligations to strive to relieve pain, to be competent in basic pain control, and to endeavour to give patients an adequate understanding of their illness and painkillers. The most common moral problem in pain control in terminally ill patients is the conflict between the obligation to relieve suffering and the obligation to prolong life. The law prohibits intentionally causing the death of another person. Debates follow as to what constitutes an intention to cause death, and what actually constitutes a cause of death. At present, doctors are legally permitted to give sedatives and analgesics to terminally ill patients with the intention of relieving suffering, even if life is shortened. The moral principle of the 'double effect' relates to this and is explained. It relies on a distinction between intended and foreseen effects of treatment. Some people dispute the distinction between intended and foreseen effects and claim that the principle of double effect allows doctors who intend euthanasia to carry it out under cover of the law. This debate is explored in the article. Finally, is it ever morally justifiable to end the patient's life on the grounds that this is the only way to end pain? Even if it is, should euthanasia be legalised? A brief comment on these issues, and the roles of law and morality, are made.
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.
Jul 2, 2011 ... Social Work Lecturer in Palliative Care, Department of Public Health and Family ... patient and family – the 'unit of care' – makes it all the more likely that ... professional nurse administers medication and gives nursing care, the.
Integrating palliative care in the surgical and trauma intensive care unit: a report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care.
Mosenthal, Anne C; Weissman, David E; Curtis, J Randall; Hays, Ross M; Lustbader, Dana R; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Bassett, Rick; Boss, Renee D; Brasel, Karen J; Campbell, Margaret; Nelson, Judith E
Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. We searched the MEDLINE database from inception to May 2011 for all English language articles using the term "surgical palliative care" or the terms "surgical critical care," "surgical ICU," "surgeon," "trauma" or "transplant," and "palliative care" or "end-of- life care" and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. "Consultative," "integrative," and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and "culture" in the unit and institution. Approaches that emphasize delivery of
Bergenholtz, Heidi; Jarlbæk, Lene; Hølge-Hazelton, Bibi
and the nurses' reflections on GPNC: (1) GPNC provided in a treatment setting, (2) transition to loving care and the licence to perform palliative care (PC) and (3) potential for team improvement. Conclusions: GPNC as a culture in medical departments seemed to be embedded in a setting not suited for dying...... patients. Palliative care was still practised according to the transition model of care, sharply dividing curative from palliative care, and was inappropriately conducted in a fragmented and individual-based way. The term ‘loving care’ was used as a ‘gate-opener’ to provide palliative care for the dying......Background: In many countries, approximately half of the population dies in hospital, making general palliative nursing care (GPNC) a core nursing task. GPNC in the hospital setting is described as challenging, however little is known about its actual practice. Aim: To explore the GPNC culture...
O'Connor, Moira; Pugh, Judith; Jiwa, Moyez; Hughes, Jeff; Fisher, Colleen
Palliative care emphasizes an interdisciplinary approach to care to improve quality of life and relieve symptoms. Palliative care is provided in many ways; in hospices, hospital units, and the community. However, the greatest proportion of palliative care is in the community. In hospice and palliative care units in hospitals, clinical pharmacists are part of the interdisciplinary team and work closely with other health care professionals. Their expertise in the therapeutic use of medications is highly regarded, particularly as many palliative care patients have complex medication regimens, involving off-label or off-license prescribing that increases their risk for drug-related problems. However, this active involvement in the palliative care team is not reflected in the community setting, despite the community pharmacist being one of the most accessible professionals in the community, and visiting a community pharmacist is convenient for most people, even those who have limited access to private or public transport. This may be due to a general lack of understanding of skills and knowledge that particular health professionals bring to the interdisciplinary team, a lack of rigorous research supporting the necessity for the community pharmacist's involvement in the team, or it could be due to professional tensions. If these barriers can be overcome, community pharmacists are well positioned to become active members of the community palliative care interdisciplinary team and respond to the palliative care needs of patients with whom they often have a primary relationship.
Bookbinder, Marilyn; McHugh, Marlene E
There is a need for generalist- and specialist-level palliative care clinicians proficient in symptom management and care coordination. Major factors contributing to this need include changed disease processes and trajectories, improved medical techniques and diagnostic testing, successful screening for chronic conditions, and drugs that often prolong life. The rapid progressive illnesses and deaths that plagued the first half of the twentieth century have been replaced in the twenty-first century by increased survival rates. Conditions that require ongoing medical care beyond a year define the current chronic illness population. Long years of survival are often accompanied by a reduced quality of life that requires more medical and nursing care and longer home care. This article reviews the management of selected symptoms in palliative and end of life care.
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.
Knapp, Caprice A; Madden, Vanessa; Wang, Hua; Kassing, Kristin; Curtis, Charlotte; Sloyer, Phyllis; Shenkman, Elizabeth A
Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care. A cross-sectional research design using online and mail-in survey data was used to address the study aims. Surveys were conducted with 279 pediatric nurses across Florida. Bivariate results showed there were significant differences between the attitudes of pediatric nurses employed in a city with a pediatric palliative care program versus those not employed in a program site (p = 0.05). Multivariate analyses also showed that being employed in a program site increased attitudinal scores toward hospice and pediatric palliative care by 0.6 points. Beyond being employed in an area city where a pediatric palliative care program operates, results also suggest that having prior training in palliative care could alter nurses' attitudes, which might subsequently lead to increased referrals and improved outcomes for children and families.
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.
Walker, Kathryn A; Scarpaci, Laura; McPherson, Mary Lynn
Pharmacists have much to offer in caring for patients with an advanced illness. To celebrate the role of pharmacists in palliative care, we wanted to share 50 excellent reasons to love your pharmacist. This list was compiled by 3 pharmacists specializing in end-of-life care spanning from inpatient palliative care to home-based hospice. Our goal is to increase awareness among other hospice and palliative care practitioners by recognizing the skills pharmacists contribute in caring for patients at the end of life. We divided the list into categories: provision of pharmaceuticals, optimizing medication regimens, education and drug information, patient safety, and administration/formulary management.
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.
Francke, A.L.; Kerkstra, A.
In this paper several types of specialized palliative care services in The Netherlands are presented. These include palliative care units in homes for the elderly, in nursing homes, in a general hospital and in an oncology clinic. In addition, a description is given of private hospices and of a home
Full Text Available This essay is a reflection on the multidisciplinary team in palliative care, from the perspective of a final year MBBS student from the UK spending one month with an Indian pain and palliative care team at Institute Rotary Cancer Hospital (IRCH, AIIMS, New Delhi.
Full Text Available The quality of palliative care given to terminally ill patients and their family members can be directly impacted by the attitudes that nurses hold towards palliative care. This study aimed to investigate the attitudes of nonpalliative care nurses towards death and dying in the context of palliative care. Nurses working within the medical aged care, cardiology and respiratory wards at two metropolitan teaching hospitals in Sydney completed the Frommelt Attitudes Towards Care of the Dying (FATCOD scale, an anonymous self-administered questionnaire, and a twelve-item demographic questionnaire. A total of 95 completed surveys were used in the final analysis. The total FATCOD score was 119.8±11.1, patient FATCOD was 79.6±8.6, and family FATCOD was 40.2±4.4. Of significance, the professional variables designation and role were associated with attitudes in the total FATCOD and country of birth, designation, highest level of education, and role were associated with attitudes towards the patient FATCOD. Scores for communication between the nurse and the terminally ill patient were poor. Health care facilities should focus on developing strategies to improve the communication skills among nonpalliative care nurses in order to optimize patient outcomes.
clinicians and researchers conceptualise palliative care. It is suggested that a constellation of parameters: stage of disease (advanced or active, prospect of cure (little or none, and treatment goals (primarily quality of life may ultimately inform search strategies. This may be similarly true for chronic diseases, which share the inherent passage of time which marks them apart from acute, and therefore more readily identifiable, episodes of care.
Neergaard, Mette Asbjørn; Jensen, AB; Olesen, Frede;
4th Research Forum of the European Association for Palliative Care "Collaborate to Catalyse Research", Venice Lido,......4th Research Forum of the European Association for Palliative Care "Collaborate to Catalyse Research", Venice Lido,...
Zeinah, Ghaith F Abu; Al-Kindi, Sadeer G; Hassan, Azza Adel
Palliative Care (PC) is still a relatively new concept in the Middle East (ME). It was first introduced in Saudi Arabia in 1992 and only recently in countries such as Qatar, Bahrain, and the UAE. Although the majority of Middle-Eastern countries, including Palestine, Iraq, Oman and Lebanon are in the capacity building phase, others such as Saudi and Jordan already have localized provision. In the absence of any of the ME countries approaching integration with the mainstream service providers, Saudi Arabia and Jordan are currently setting examples of achievement in the field. There are still countries with little or no known Palliative Care activity (Yemen and Syria). Political issues, scarcity of resources, and lack of education and awareness seem to be the common factors restricting the progress of this field in most countries. In order to improve the suboptimal PC services in the ME, emphasis should be directed toward providing formal education to professionals and raising awareness of the public. It is also necessary to put all differences aside and develop cross-border collaborations, whether through third party organizations such as the Middle East Cancer Consortium (MECC) or otherwise. This review compiles the available literature on the history and progress of the field of PC in most ME countries, while pointing out the major obstacles encountered by the active parties of each country.
Kumar, Senthil P
Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. This was a systematic review of palliative care journals. Twelve palliative care journals were searched for articles with "paediatric" or "children" in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles' category was further classified according to study designs. Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). 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.
Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo
The study purpose was to understand the perspectives of bereaved family members regarding palliative care unit (PCU) and palliative care and to compare perceptions of PCU before admission and after bereavement. A cross-sectional questionnaire survey was conducted, and the perceptions of 454 and 424 bereaved family members were obtained regarding PCU and palliative care, respectively. Family members were significantly more likely to have positive perceptions after bereavement (ranging from 73% to 80%) compared to before admission (ranging from 62% to 71%). Bereaved family members who were satisfied with medical care in the PCU had a positive perception of the PCU and palliative care after bereavement. Respondents younger than 65 years of age were significantly more likely to have negative perceptions of PCU and palliative care.
Noorani, Nazneen Hyder; Montagnini, Marcos
Clinically significant depression is a common psychiatric disorder in patients with advanced and terminal diseases. Depression is often unrecognized and untreated and it causes major suffering to patients and families. Having adequate knowledge and skills to properly recognize depression in patients with advanced illnesses is essential for providing comprehensive end-of-life care. The objective of this paper is to review the key elements of the assessment of depression in palliative care patients. We also discuss the challenges of making the diagnosis, review the risk factors associated with depression and describe the features of the most common assessment tools that have been studied in this population. Finally, we highlight how to differentiate depression from normal grief, as the overlap between these conditions imposes a diagnostic challenge.
Farber, Eugene W; Marconi, Vincent C
Advances in treatment are contributing to substantial increases in life expectancy for individuals living with HIV, prompting a need to develop care models for the effective management of HIV as a chronic illness. With many individuals continuing to experience symptoms and complications that add to the disease burden across the spectrum of HIV disease, the discussion herein explores the complementary role that early palliative care can play in HIV primary care as a strategy for enhancing long-term quality of life. After first defining the concept of early palliative care, its scope in the context of current clinical realities in HIV treatment and implications for HIV care models is described. After reviewing the emerging extant research literature on HIV palliative care outcomes, a program description is offered as an illustration of how palliative care integration with HIV primary care can be achieved.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
Introduction: 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. Context: This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. Aims: 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
Smith, C B; Nelson, J E; Berman, A R; Powell, C A; Fleischman, J; Salazar-Schicchi, J; Wisnivesky, J P
Integration of palliative care with standard oncologic care improves quality of life and survival of lung cancer patients. We surveyed physicians to identify factors influencing their decisions for referral to palliative care. We provided a self-administered questionnaire to physicians caring for lung cancer patients at five medical centers. The questionnaire asked about practices and views with respect to palliative care referral. We used multiple regression analysis to identify predictors of low referral rates (consultation. Multivariate analysis, controlling for provider characteristics, found that low referral rates were associated with physicians' concerns that palliative care referral would alarm patients and families [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.21-0.98], while the belief that palliative care specialists have more time to discuss complex issues (OR 3.07, 95% CI 1.56-6.02) was associated with higher rates of referral. Although palliative care consultation is increasingly available and recommended throughout the trajectory of lung cancer, our data indicate it is underutilized. Understanding factors influencing decisions to refer can be used to improve integration of palliative care as part of lung cancer management.
Ghandourh, Wsam A
Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well-informed decisions about treatment options. This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and (3) patients' and caregivers' perspective on disclosure and their preferences for communication styles. Relevant studies were identified by searching electronic databases including Pubmed, EMBASE and ScienceDirect using multiple combinations of keywords, which yielded a total of 65 articles meeting the inclusion criteria. The discrepancy between patients' and doctors' expectations was associated with many factors including doctors' reluctance to disclose terminal prognoses and patients' ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients' experience and treatment choices. Patients' views on disclosure are influenced by many cultural, psychological and illness-related factors, therefore individuals' needs must be considered when conveying prognostic information. More research is needed to identify communication barriers and the interventions that could be used to increase patients' satisfaction with palliative care.
Partridge, Ann H; Seah, Davinia S E; King, Tari; Leighl, Natasha B; Hauke, Ralph; Wollins, Dana S; Von Roenn, Jamie Hayden
Palliative care is a fundamental component of cancer care. As part of the 2011 to 2012 Leadership Development Program (LDP) of the American Society of Clinical Oncology (ASCO), a group of participants was charged with advising ASCO on how to develop a service model integrating palliative care throughout the continuum of cancer care. This article presents the findings of the LDP group. The group focused on the process of palliative care delivery in the oncology setting. We identified key elements for models of palliative care in various settings to be potentially equitable, sustainable, feasible, and acceptable, and here we describe a dynamic model for the integrated, simultaneous implementation of palliative care into oncology practice. We also discuss critical considerations to better integrate palliative care into oncology, including raising consciousness and educating both providers and the public about the importance of palliative care; coordinating palliative care efforts through strengthening affiliations and/or developing new partnerships; prospectively evaluating the impact of palliative care on patient and provider satisfaction, quality improvement, and cost savings; and ensuring sustainability through adequate reimbursement and incentives, including linkage of performance data to quality indicators, and coordination with training efforts and maintenance of certification requirements for providers. In light of these findings, we believe the confluence of increasing importance of incorporation of palliative care education in oncology education, emphasis on value-based care, growing use of technology, and potential cost savings makes developing and incorporating palliative care into current service models a meaningful goal.
Street, A; Blackford, J
This paper discusses the findings of a critical study that examined the communication patterns between nurses and general practitioners (GPs) providing palliative care in Australia. Interviews and focus groups involved 40 palliative care nurses who worked in the three settings of care: community, hospice and hospital. Issues that impeded effective communication strategies between palliative care nurses and GPs were networking, case management, multiple service providers, lack of standardized documentation and formal tracking of clients, along with difficulties in transmission of relevant practice knowledge. Supporting strategies for effective formal modes of communicating and reporting are described.
Wu, Hung-Lan; Volker, Deborah L
This article presents a discussion of the relevance of Humanistic Nursing Theory to hospice and palliative care nursing. The World Health Organization has characterized the need for expert, palliative and end-of-life care as a top priority for global health care. The specialty of hospice and palliative care nursing embraces a humanistic caring and holistic approach to patient care. As this resonates with Paterson and Zderad's Humanistic Nursing Theory, an understanding of hospice nurses' experiences can be investigated by application of relevant constructs in the theory. This article is based on Paterson and Zderad's publications and other theoretical and research articles and books focused on Humanistic Nursing Theory (1976-2009), and data from a phenomenological study of the lived experience of Taiwanese hospice nurses conducted in 2007. Theoretical concepts relevant to hospice and palliative nursing included moreness-choice, call-and-response, intersubjective transaction, uniqueness-otherness, being and doing and community. The philosophical perspectives of Humanistic Nursing Theory are relevant to the practice of hospice and palliative care nursing. By 'being with and doing with', hospice and palliative nurses can work with patients to achieve their final goals in the last phase of life. Use of core concepts from Humanistic Nursing Theory can provide a unifying language for planning care and describing interventions. Future research efforts in hospice and palliative nursing should define and evaluate these concepts for efficacy in practice settings. © 2011 Blackwell Publishing Ltd.
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.
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.
Anna Sandgren, RN, M.Sc.N., Ph.D. Student
Full Text Available The aim of this study was to develop a classic grounded theory of palliative cancer patients and their relatives in the context of home care. We analyzed interviews and data related to the behaviour of both patients and relatives. “Living on hold” emerged as the pattern of behaviour through which the patients and relatives deal with their main concern, being put on hold. Living on Hold involves three modes: Fighting, Adjusting and Surrendering. Mode being may change during a trajectory depending on many different factors. There are also different triggers that can start a reconciling process leading to a change of mode. This means that patients and relatives can either be in the same mode or in different modes simultaneously. More or less synchronous modes may lead to problems and conflicts within the family, or with the health professionals.
Civetta, J M
In the area of end-of-life bioethical issues, patients, families, and health care providers do not understand basic principles, often leading to anguish, guilt, and anger. Providers lack communication skills, concepts, and practical bedside information. Linking societal values of the sanctity of life and quality of life with medical goals of preservation of life and alleviation of suffering respectively provides an essential structure. Medical care focuses on cure when possible but when the patient is dying, the focus switches to caring for patients and their families. Clinicians need to learn how to balance the benefits and burdens of medications and treatments, control symptoms, and orchestrate withdrawal of treatment. Finally, all need to learn more about the dying process to benefit society, their own families, and themselves.
Full Text Available Bedside ultrasound is an important tool in modern palliative care practice. It can be utilized for rapid diagnostic evaluation or as an image guidance to perform invasive therapeutic procedures. With advent of portable ultrasound machines, it can also be used in community or home care settings, apart from palliative care wards. Major applications of bedside ultrasound include drainage of malignant pleural effusions and ascites, nerve blocks, venous access, evaluation of urinary obstruction, deep vein thrombosis and abscesses. Bedside ultrasound leads to better clinical decision-making as well as more accurate and faster invasive therapeutic procedures. It also enhances patient comfort and reduces cost burden. However, use of bedside ultrasound is still not widespread among palliative care givers, owing to initial cost, lack of basic training in ultrasound and apprehensions about its use. A team approach involving radiologists is important to develop integration of bedside ultrasound in palliative care.
Kamal, Arif H; Currow, David C; Ritchie, Christine; Bull, Janet; Wheeler, Jane L; Abernethy, Amy P
Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared.
De Lima, Liliana; Krakauer, Eric L; Lorenz, Karl; Praill, David; Macdonald, Neil; Doyle, Derek
In response to a request from the World Health Organization (WHO), the International Association for Hospice and Palliative Care (IAHPC) developed a List of Essential Medicines for Palliative Care based on the consensus of palliative care workers from around the world. IAHPC designed a process of five steps, which included developing a set of ethical guidelines; identifying the most common symptoms in palliative care; identifying a list of medications to treat those symptoms; carrying out a survey using a modified Delphi process with participants from developed and developing countries; and convening a meeting of representatives from regional, international, and scientific organizations to develop the final list. Twenty-one symptoms were identified as the most common in palliative care, and an initial list of 120 medications resulted from the initial survey. Seventy-one participants from developing and developed countries responded to the Delphi survey and agreed on the effectiveness and safety of 48 medications for 18 of the 21 symptoms. The final step included discussions among representatives from 26 organizations, which led to the finalization of the list. The IAHPC List of Essential Medicines for Palliative Care includes 33 medications, of which 14 are already included in the WHO Model List. The participants agreed that there is too little evidence to recommend medications for five of the symptoms and suggested that further research be carried out to solve this need. The IAHPC and all the organizations involved in this process welcome suggestions on ways to continue to improve the List of Essential Medicines for Palliative Care and to improve access to medications for patients in need.
Maeyama, Etsuko; Kawa, Masako; Miyashita, Mitsunori; Ozawa, Taketoshi; Futami, Noriko; Nakagami, Yuriko; Sugishita, Chieko; Kazuma, Keiko
Health-care providers engaged in palliative care experience difficulty with the practice of team care. However, the details of the difficulties have not been not clarified. To obtain an overview of team care in the Japanese palliative inpatient care setting, a descriptive and cross-sectional study was performed. The participants were physicians, nurses, dietitians, medical social workers (MSWs), and pharmacists. A representative from each discipline was selected. They were asked about their participation in services provided by government-approved palliative care units (PCUs) and the practice of team care. A total of 38 institutions participated in this study. In these institutions, 97% of physicians, 37% of dietitians, 39% of MSWs, 27% of pharmacists, and 13% of physical therapists attended PCU care meetings once a week or more, and 35% of religious workers and 11% of counselors attended. About 70% of institutions held regular care meetings with more than three types of health-care providers. Physicians and nurses had different perceptions regarding the practice of team care. The former had a positive perception of team care and the latter had a negative perception. In addition, nurses' perception of overall team care was related to their perception of care meetings ( P=0.052) and the number of types of professional participating in care meetings ( P=0.054). To promote team care in the Japanese palliative care setting, it is necessary to consider a practical standard of team care, and to conduct effective care meetings.
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert
The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize
Full Text Available The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1 exposing uncertainty, (2 co-constructing patient preferences, (3 affirming patient autonomy, and finally (4 upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to
Baile, Walter F; Walters, Rebecca
We introduce the technique of sociodrama, describe its key components, and illustrate how this simulation method was applied in a workshop format to address the challenge of discussing transition to palliative care...
Intensive care medicine and palliative care medicine were considered for a long time to be contrasting concepts in therapy. While intensive care medicine is directed towards prolonging life and tries to stabilize disordered body functions, palliative care medicine is focused upon the relief of disturbances to help patients in the face of death. Today both views have become congruent. Palliative aspects are equally important in curative therapy. In the course of illness or in respect of the patient's will, the aim of therapy may change from curative to palliative. Two examples are presented to illustrate the ethical challenges in this process. They follow from the medical indication, attention to the patient's will, different opinions in the team, truth at the bedside and from what must be done in the process of withdrawing therapy.
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.
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 charity Together for Short Lives has launched a campaign to encourage nurses to consider a role in children's palliative care in the voluntary sector, to prevent any further reduction in services for this already vulnerable group.
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.
... fullstory_160885.html Early Palliative Care Improves Patients' Quality of Life Also increases chances of having end-of-life ... incurable cancer helps patients cope and improves their quality of life, a new study shows. It also leads to ...
Queiroz, Ana Carolina de Castro Mendonça; Mota, Dálete Delalibera Corrêa de Faria; Bachion, Maria Marcia; Ferreira, Ana Cássia Mendes
Persons in palliative care develop pressure ulcers (PU) as death approaches, but the extent of the problem is still unknown. The objectives were to identify the prevalence of pressure ulcers in people with cancer in palliative home care, compare the socio-demographic and clinical profile of patients with and without pressure ulcers, and analyze the characteristics of the ulcers. This descriptive, cross-sectional study included 64 people with advanced cancer in palliative home care. Twelve of them (18.8%) had PU, of whom 75.0% were men. The participants had one to three PU, amounting to 19 lesions, 89.4% of those developed at home and 47.4% at stage 3. The presence of PU was higher among those who had a history of previous wound. PU consisted of a significant event occurring in the studied population, indicating that preventive measures should be included in the home palliative care health team.
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.
Full Text Available When spiritual needs are effectively elaborated, they can help the individual to find meaning, sustain hope, and accept death in the context of the end of life. Counselling has been one of the therapies that is mostused to meet these needs. The aim of this work is to offer evidence on the efficacy of this therapy to improve the spirituality of patients attended in several health devices. In order to achieve this objective, a three-week intervention was carried out with 131 home care and hospitalized patients. The mean age was 70.61 (SD = 11.17; 51.1% were men. Spirituality was assessed before and after the intervention, and a multivariate analysis of variance (MANOVA was used to study the differences between these two moments, together with follow-up ANOVAs. Results indicated a positive effect, with a large effect size, F(3,110 = 31.266, p less than .001, E2 = .460. This study can be the starting point for the implementation of intervention programs in the context of palliative care.
De Lima, Liliana; Pastrana, Tania
In May 2014, the World Health Assembly, of the World Health Organization (WHO), unanimously adopted a palliative care (PC) resolution, which outlines clear recommendations to the United Nations member states, such as including PC in national health policies and in the undergraduate curricula for health care professionals, and highlights the critical need for countries to ensure that there is an adequate supply of essential PC medicines, especially those needed to alleviate pain. This resolution also carries great challenges: Every year over 20 million patients (of which 6% are children) need PC at the end of life (EOL). However, in 2011, approximately three million patients received PC, and only one in ten people in need is currently receiving it. We describe this public health situation and systems failure, the history and evolution of PC, and the components of the WHO public health model. We propose a role for public health for PC integration in community settings to advance PC and relieve suffering in the world.
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....... Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance...
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....... Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance...
McConnell, T; Porter, Samuel
OBJECTIVE: 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. METHOD: We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therap...
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
Abstract Use of Chinese herbal medicines (CHM) in symptom management for cancer palliative care is very common in Chinese populations but clinical evidence on their effectiveness is yet to be synthesized. To conduct a systematic review with meta-analysis to summarize results from CHM randomized controlled trials (RCTs) focusing on symptoms that are undertreated in conventional cancer palliative care. Five international and 3 Chinese databases were searched. RCTs evaluating CHM, either in comb...
McConnell, T.; Porter, Samuel
OBJECTIVE: 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. METHOD: We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therap...
Collaborations in palliative care have helped to create a framework and identify preferred practices so the field of palliative care can grow. Teamwork designed in a transdisciplinary style is desired and provides whole-person, sensitive, and comprehensive care. In applying the basic key concepts and evidenced-based knowledge of palliative care, this article details one palliative care department's effort to create change, enhance the delivery of care, and build their palliative care practice. Creating collaborations and building partnerships were fundamental outcomes to improve the palliative care practice, increase transdisciplinary teamwork activities, and enhance the delivery of care in this organization.
Neuenschwander, Hans; Gamondi, Claudia
The PC program of the Italian speaking part of Switzerland (Ticino) has been developed bottom up since 1990. It was started with a palliative homecare service, called Hospice Ticino. Six years later PC consultant teams were introduced in the public hospitals. Finally in 2003 an acute palliative care unit was opened. Few resources are still lacking to ensure a comprehensive network, especially in the private clinics and in the elderly homes. Through the newly implemented National Strategy in PC 2010 - 12, the government of Canton Ticino has been charged with promoting a comprehensive, strategic and operative program in PC in order to guarantee access to high quality PC to every patient wherever he choses to be cared for. The article describes the history of Ticino's palliative care program, highlighting some of its controversial issues.
There has been much written to support music therapy as an adjunct in managing pain and anxiety in palliative care patients in Western societies, but little written on its use in developing countries. In light of increasing numbers of terminally ill patients in Tanzania owing to HIV/AIDS and cancer, limited access to opioids, and a growing interest in palliative care support, this study looks at the application of music in this context. The study reviews the history and principles of therapeutic music and outlines its role in palliative care. A qualitative study was conducted by questionnaire of 17 professionals involved in home-based palliative care in Tanzania. Findings include beliefs about the power of music, how music is being used to bring comfort to the dying patient, and the most important aspects of helpful music to many Tanzanian palliative care patients. Music can powerfully affect body, mind and spirit. It is vocal music, which is an accepted therapeutic music tool used to bring comfort to the palliative care patient and their family members. Finally, music is an active and participatory activity in Tanzanian culture, even for the dying.
van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Sommerbakk, Ragni; Moyle, Wendy; Hjermstad, Marianne J; Leppert, Wojciech; Vissers, Kris; Engels, Yvonne
The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care. Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy. From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies). This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care.
Full Text Available Background: Palliative care has become an emerging need of the day as the existing health-care facilities play only a limited role in the care of the chronically ill in the society. Patients with terminal illness in most cases spend their lives in the community among their family and neighbors, so there is the need for a multi disciplinary team for their constant care. Volunteers are primary care givers who originate normally from the same locality with local knowledge and good public contact through which they can make significant contributions in a team work by bridging the gap between the patient community and outside world. Aim: The present study has been undertaken to analyze the impact of palliative care services on patients by considering 51 variables. Materials and Methods: The respondents of the study include 50 pain and palliative care patients selected at random from 15 palliative care units functioning in Ernakulam district. The analysis was made by using statistical techniques viz. weighted average method, Chi-square test, Friedman repeated measures analysis of variance on ranks and percentages. Results: The study revealed that the major benefit of palliative care to the patients is the reduction of pain to a considerable extent, which was unbearable for them earlier. Second, the hope of patients could be maintained or strengthened through palliative care treatment. Conclusion: It is understood that the services of the doctors and nurses are to be improved further by making available their services to all the palliative care patients in a uniform manner.
Full Text Available Paul Glare, Jeanna Miller, Tanya Nikolova, Roma TickooPain and Palliative Care Service, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, NY, USAAbstract: Nausea and vomiting are portrayed in the specialist palliative care literature as common and distressing symptoms affecting the majority of patients with advanced cancer and other life-limiting illnesses. However, recent surveys indicate that these symptoms may be less common and bothersome than has previously been reported. The standard palliative care approach to the assessment and treatment of nausea and vomiting is based on determining the cause and then relating this back to the “emetic pathway” before prescribing drugs such as dopamine antagonists, antihistamines, and anticholinergic agents which block neurotransmitters at different sites along the pathway. However, the evidence base for the effectiveness of this approach is meager, and may be in part because relevance of the neuropharmacology of the emetic pathway to palliative care patients is limited. Many palliative care patients are over the age of 65 years, making these agents difficult to use. Greater awareness of drug interactions and QTc prolongation are emerging concerns for all age groups. The selective serotonin receptor antagonists are the safest antiemetics, but are not used first-line in many countries because there is very little scientific rationale or clinical evidence to support their use outside the licensed indications. Cannabinoids may have an increasing role. Advances in interventional gastroenterology are increasing the options for nonpharmacological management. Despite these emerging issues, the approach to nausea and vomiting developed within palliative medicine over the past 40 years remains relevant. It advocates careful clinical evaluation of the symptom and the person suffering it, and an understanding of the clinical pharmacology of medicines that are available for palliating
Full Text Available Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.
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......-assessment questionnaires were obtained from 176 patients (65.9%). The 91 nonparticipants were older and had lower Karnofsky Performance status (KPS) values than the participants. Almost all participating patients suffered from impaired role function and physical function and had high levels of pain, fatigue, and other...... symptoms. According to the HADS, 47% of patients suffered from depression. Outpatients had better scores than inpatients and patients in palliative home care for physical function, role function, cognitive function, depression, and inactivity. CONCLUSIONS: It is possible to carry out a questionnaire...
Margaret I Fitch
Full Text Available Caring for individuals at the end of life in the hospital environment is a challenging proposition. Understanding the challenges to provide quality end of life care is an important first step in order to develop appropriate approaches to support and educate staff members and facilitate their capacity remaining "caring." Four studies were undertaken at our facility to increase our understanding about the challenges health professionals experience in caring for patients at end of life and how staff members could be supported in providing care to patients and families: (1 In-depth interviews were used with cancer nurses (n = 30 to explore the challenges talking about death and dying with patients and families; (2 Surveys were used with nurses (n = 27 and radiation therapists (n = 30 to measure quality of work life; (3 and interprofessional focus groups were used to explore what it means "to care" (five groups held; and (4 interprofessional focus groups were held to understand what "support strategies for staff" ought to look like (six groups held. In all cases, staff members confirmed that interactions concerning death and dying are challenging. Lack of preparation (knowledge and skill in palliative care and lack of support from managers and colleagues are significant barriers. Key strategies staff members thought would be helpful included: (1 Ensuring all team members were communicating and following the same plan of care, (2 providing skill-based education on palliative care, and (3 facilitating "debriefing" opportunities (either one-on-one or in a group. For staff to be able to continue caring for patients at the end of life with compassion and sensitivity, they need to be adequately prepared and supported appropriately.
Friedrichsdorf, Stefan J; Kohen, Daniel P
At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC. Unfortunately, even in resource-rich countries the majority of children dying from serious advanced illnesses are suffering from unrelieved, distressing symptoms such as pain, dyspnea, nausea, vomiting, and anxiety. State of the art treatment and prevention of those symptoms requires employing multi-modal therapies, commonly including pharmacology, rehabilitation, procedural intervention, psychology, and integrative modalities. This article describes the current practice of integrating hypnosis into advanced pain and symptom management of children with serious illness. Three case reports of children living with a life-limiting condition exemplify the effective use of this clinical modality to decrease distressing symptoms and suffering. Hypnosis for pediatric patients experiencing a life-limiting disease not only provides an integral part of advanced symptom management, but also supports children dealing with loss and anticipatory loss, sustains and enhances hope and helps children and adolescents live fully, making every moment count, until death.
Lagman, Ruth; Rivera, Nilo; Walsh, Declan; LeGrand, Susan; Davis, Mellar P
The clinical characteristics and medical interventions of the 100 consecutive cancer admissions to the acute care inpatient palliative medicine unit at the Cleveland Clinic for 2 months are described. Median age was 62 years (range, 31 to 92 years). The male-female ratio was 1:1. Most admissions were referred by hematology-oncology and had prior antineoplastic therapy. Reasons for admission were symptom control and cancer-related complications. Patients underwent invasive diagnostic and therapeutic procedures, hydration, transfusions, radiation, or chemotherapy, or a combination, during their admission. Most were discharged home with hospice care or had outpatient clinic follow-up. The mortality rate was 20%. Aggressive multidisciplinary management of symptoms, disease complications, comorbid conditions, and psychosocial problems were provided. Palliative medicine physicians provided continuity of care in the outpatient clinic and at home. An acute inpatient palliative medicine unit within a tertiary level medical center has a definable and important role in comprehensive cancer care.
Full Text Available The improvements in the obstetrical and neonatal diagnosis and therapies have resulted into an increase in the survival rate of infants previously considered as non-viable. Debate is focusing on professionals’ behaviour about withdrawal or withholding of life sustaining treatment (LST and administration of palliative care for newborns whose conditions are incompatible with a prolonged life. Decisions about treatment should be made jointly by the professionals’ team and the family, placing the interest of the baby at the very heart of the decision process. It is very important that the environment in which the family has to make the decision is characterized by openness, dialogue and frankness. A proper and effective communication with parents is always necessary and can resolve any conflict caused by disagreement. Furthermore, parents need time in the decision making process. Other supports, which could help the family in the final decision are the possibility to ask for a specialist’s second opinion and the involvement of religious leaders and of an indipendent clinical ethics committee. Withholding or withdrawal of LST does not mean cessation of care for the baby, it means to change the focus of care from curative to palliative care. Proceedings of the 10th International Workshop on Neonatology · Cagliari (Italy · October 22nd-25th, 2014 · The last ten years, the next ten years in Neonatology Guest Editors: Vassilios Fanos, Michele Mussap, Gavino Faa, Apostolos Papageorgiou
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.
Georges, Jean-Jacques; Onwuteaka-Philipsen, Bregje D; van der Heide, Agnes; van der Wal, Gerrit; van der Maas, Paul J
In recent decades significant developments in end-of-life care have taken place in The Netherlands. There has been more attention for palliative care and alongside the practice of euthanasia has been regulated. The aim of this paper is to describe the opinions of physicians with regard to the relationship between palliative care and euthanasia, and determinants of these opinions. Cross-sectional. Representative samples of physicians (n = 410), relatives of patients who died after euthanasia and physician-assisted suicide (EAS; n = 87), and members of the Euthanasia Review Committees (ERCs; n = 35). Structured interviews with physicians and relatives of patients, and a written questionnaire for the members of the ERCs. Approximately half of the physicians disagreed and one third agreed with statements describing the quality of palliative care in The Netherlands as suboptimal and describing the expertise of physicians with regard to palliative care as insufficient. Almost two thirds of the physicians disagreed with the suggestion that adequate treatment of pain and terminal care make euthanasia redundant. Having a religious belief, being a nursing home physician or a clinical specialist, never having performed euthanasia, and not wanting to perform euthanasia were related to the belief that adequate treatment of pain and terminal care could make euthanasia redundant. The study results indicate that most physicians in The Netherlands are not convinced that palliative care can always alleviate all suffering at the end of life and believe that euthanasia could be appropriate in some cases.
On July 20, 2015, the federal Centers for Medicare & Medicaid Services (CMS) announced hospices that have been selected to participate in the Medicare Care Choices Model. Fewer than half of the Medicare beneficiaries use hospice care for which they are eligible. Current Medicare regulations preclude concurrent palliative and curative care. Under the Medicare Choices Model, dually eligible Medicare beneficiaries may elect to receive supportive care services typically provided by hospice while continuing to receive curative services. This report describes how CMS has expanded the model from an originally anticipated 30 Medicare-certified hospices to over 140 Medicare-certified hospices and extended the duration of the model from 3 to 5 years. Medicare-certified hospice programs that will participate in the model are listed.
Álvarez-Cordovés, M M; Mirpuri-Mirpuri, P G; Gonzalez-Losada, J; Chávez-Díaz, B
We present a case of a patient diagnosed with glioblastoma multiforme refractory to treatment. Glioblastoma multiforme is the most common primary brain tumour and unfortunately the most aggressive, with an estimated mortality of about 90% in the first year after diagnosis. In our case the patient had reached a stage of life where quality of life was importsnt, with palliative care being the only recourse. The family is the mainstay in the provision of care of terminally ill patients, and without their active participation it would be difficult to achieve the objectives in patient care. We must also consider the family of the terminally ill in our care aim, as its members will experience a series of changes that will affect multiple areas where we should take action. Copyright © 2012 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España. All rights reserved.
Turner, Mary; Payne, Sheila; Barbarachild, Zephyrine
This study aimed to evaluate health professionals' views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice.
Koshikawa, Takafumi; Shimoyama, Naohito
Multi-disciplinary team work among visiting doctors, nurses, care managers and pharmacists located close to the patient's home is essential for smooth transition of a palliative care patient from hospital care to palliative home care and should be set up prior to the patient's discharge from the hospital. Palliative home care physicians should have knowledge of the fundamental support by the government to spare excessive cost to the patients. As for cancer pain management, opioid-centered analgesic therapies have lead to better quality home care for patients. In Japan, although oxycodone SRs and fentanyl patches are available besides morphine, there is no rescue opioid other than morphine. On the other hand, some cancer pain refractory to opioids such as neuropathic cancer pain should be carefully treated by adjuvant analgesics in conjunction with non-pharmacological treatments.
Tait, Paul Anthony; Gray, John; Hakendorf, Paul; Morris, Bel; Currow, David Christopher; Rowett, Debra S
Timely access to medicines within the community is important for palliative patients where their preferred place of care is the home environment. The objective of this observational study is to establish baseline data to quantify the issue of poor access to medicines for symptom control in the last few days of life. The list of 13 medicines was generated from medicine use within a metropolitan palliative care unit. A survey was designed to determine which of these 13 medicines community pharmacies stock, the expiry date of this stock, awareness of palliative care patients by community pharmacists and basic demographic characteristics of the community pharmacies. Surveys were distributed, by post, to all community pharmacies in South Australia. The response rate was 23.7%, and was representative of all socioeconomic areas. Each pharmacy stocked a median of 3 medicines (range 0-12) with 1 in 8 pharmacies having none of the 13 medicines listed in the survey. When the data was combined to identify the range of medicines from all pharmacies within a geographical postcode region, the median number of medicines increased to 5 medicines per postcode. Just over 1 in 5 pharmacies reported learning about the palliative status of a patient through another health practitioner. Community pharmacies remain an underused resource to support timely access to medicines for community-based palliative patients. Palliative care services and government agencies can develop new strategies for better access to medicines that will benefit community patients and their carers.
Vermandere, M.; Lepeleire, J. De; Mechelen, W. van; Warmenhoven, F.C.; Thoonsen, B.A.; Aertgeerts, B.
PURPOSE: Spiritual care at the end of life remains poorly understood despite its promotion by the World Health Organisation. The purpose of this paper was to develop a consensus-based framework of the main elements of spiritual care in palliative home care. METHODS: Expert meeting using the nominal
Full Text Available Background. In the last decades a palliative care has been well established in the majority of West European countries. However, majority of these countries are not able to follow needs for palliative care because of demographic changes (older population, changes of morbidity pattern (increase of chronic progressive diseases and social changes (disability of families to care for their relatives at their homes. Research is showing evidence on palliative care effectiveness at end of life and in bereavement. There is still a great need for healthcare professionals’ change in their attitudes, knowledge and skills. In many National strategic plans (United Kingdom, Ireland, Sweden, Australia, New Zealand and Canada palliative care becomes a priority in the national public health. New organizational planning supports establishement of palliative care departments in hospitals and other healthcare settings and consultant teams at all levels of healthcare system. Hospices, caritative and independent organizations, will remain as a source of good clinical practice and philosophy of care at the end of life also in the future.
Kydd, Angela; Sharp, Barbara
The current focus in dementia care places emphasis on the potential of people to live well with the condition. Given the historical tendency to neglect the full rights and citizenship of people with dementia, such an emphasis gives hope and optimism that there is life after diagnosis. This paper seeks to explore the potential compromise of effective preparation for the complexities of advanced illness that may be presented by this consistently up-beat message. Dementia is a life limiting condition, currently without cure. Therefore, the appropriateness of palliative care may seem obvious. Yet, until relatively recently, palliative care was seen as an adjunct to oncology in the minds of professionals and public alike. However, there is a growing recognition that specialist palliative care has much to offer people with a range of long term conditions, including people with dementia. So, whilst 'living well' is an important message-especially following diagnosis-planning for advanced dementia and dying well is equally important. The aim of this paper is to highlight policy on the living well and the palliative care approach for people with dementia. A word limited narrative literature review was conducted to explore how policies have or have not informed the literature on both messages. The findings emphasise the need for a continuum approach to dementia care, with discussion on when, where, and how can palliative care be delivered for people with dementia.
Rabow, Michael W; Lee, Michael Xiang
Significant symptoms and suffering related to castrate-resistant prostate cancer (CRPC) are associated with the disease and its treatment. Increasingly, with advances in treatment efficacy, men can live with symptoms for long periods. Interdisciplinary palliative care teams (including physicians, nurses, social workers, chaplains, pharmacists, psychologists, physical therapists, and nutritionists) focused on symptom management and patients' goals of care can collaborate with prostate cancer surgeons, oncologists, and radiation oncologists to provide the best care for men at all stages of treatment, including end of life. This article reviews the benefits of palliative care in helping patients with CRPC manage symptoms and distress.
Tonia C Onyeka
Full Text Available Everyone, young and old, male and female, rich and poor, should have access to excellent care during the course of a serious illness and at the end of life. Therefore, a denial of such care becomes an infringement of the individual′s human rights. Because of the efforts of pioneers in this field of Medicine in Africa and beyond, both living and immortalized, we can now say that palliative care in the African context is affordable and achievable. In this article, some of the challenges faced in setting up and running a new palliative care practice in an emerging and developing economy are examined.
Full Text Available Abstract Background Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. Methods The guidelines were developed via the following methods: (1 A literature review; (2 Conceptual framework; (3 Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. Results The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. Conclusion Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.
Al-Shahri, Mohammad Zafir
It is well established that provision of palliative care is a human right for the patients and their families going through the suffering associated with a life-threatening illness. The holistic nature of palliative care, dictated by the multifaceted suffering experienced by patients, calls for giving due consideration to the cultural and spiritual background of the target population. Similarly, the paramount impact of Islamic wholeness on Muslims' perceptions, beliefs, and way of living makes it necessary for non-Muslim palliative care professionals who are caring for Muslim patients to increase their awareness about the parts of Islamic theology pertinent to the principles of palliative care. This would include a basic knowledge of the Islamic faith and how Muslims view and cope with the calamity of a life-threatening condition along with the suffering associated with it. Equally important are issues related to the management of symptoms using agents that are normally strictly prohibited by Islamic teachings, including opioids, brain stimulants, and cannabinoids. The current review briefly discusses the Islamic perspectives pertinent to a Muslim patient's journey throughout the palliative care experience, onward to a safe passing, and beyond.
Cheville, Andrea L; Morrow, Melissa; Smith, Sean Robinson; Basford, Jeffrey R
The growing acceptance of palliative care has created opportunities to increase the use of rehabilitation services among populations with advanced disease, particularly those with cancer. Broader delivery has been impeded by the lack of a shared definition for palliative rehabilitation and a mismatch between patient needs and established rehabilitation service delivery models. We propose the definition that, in the advanced cancer population, palliative rehabilitation is function-directed care delivered in partnership with other clinical disciplines and aligned with the values of patients who have serious and often incurable illnesses in contexts marked by intense and dynamic symptoms, psychological stress, and medical morbidity to realize potentially time-limited goals. Although palliative rehabilitation is most often delivered by inpatient physical medicine and rehabilitation consultation/liaison services and by physical therapists in skilled nursing facilities, outcomes in these settings have received little scrutiny. In contrast, outpatient cancer rehabilitation programs have gained robust evidentiary support attesting to their benefits across diverse settings. Advancing palliative rehabilitation will require attention to historical barriers to the uptake of cancer rehabilitation services, which include the following: patient and referring physicians' expectation that effective cancer treatment will reverse disablement; breakdown of linear models of disablement due to presence of concurrent symptoms and psychological distress; tension between reflexive palliation and impairment-directed treatment; palliative clinicians' limited familiarity with manual interventions and rehabilitation services; and challenges in identifying receptive patients with the capacity to benefit from rehabilitation services. The effort to address these admittedly complex issues is warranted, as consideration of function in efforts to control symptoms and mood is vital to optimize
Hui, David; Bruera, Eduardo
Palliative care aims to improve cancer patients' quality of life through expert symptom management, psychosocial and spiritual care, patient-clinician communication, facilitation of complex decision making, and end-of-life care planning. Over the past few years, there has been increasing interest and evidence to support integration of oncology and palliative care. However, it remains unclear how best to promote integration. The goal of this review is to examine contemporary conceptual models and clinical approaches to integrate oncology and palliative care. Narrative review. Conceptual models are useful to help stakeholders understand the rationale for integration, to compare the risks and benefits among different practices, and to define a vision towards integration. We will review four major conceptual models of integration, including (I) the time-based model which emphasizes on integration based on chronological criterion; (II) the provider-based (palli-centric) model which discusses primary, secondary and tertiary palliative care; (III) the issue-based (onco-centric) model which illustrates the advantages and disadvantages of the solo practice, congress and integrated care approaches; and (IV) the system-based (patient-centric) model which emphasizes automatic referral based on clinical events. Clinical models provide actual data on the feasibility, efficacy and effectiveness of integration in specific settings. The evidence and challenges related to selected clinical models in integrating oncology and palliative care, such as outpatient palliative care clinics and embedded clinics will be discussed. There are multiple conceptual models and clinical models to promote integration. Further research is needed to inform best practices for integration at different healthcare settings.
Remedi, Patrícia Pereira; Mello, Débora Faleiros de; Menossi, Maria José; Lima, Regina Aparecida Garcia de
Providing care to adolescents with cancer in the process of death and dying has been a great challenge for health professionals. This challenge is marked by a high emotional burden and specificities of this stage of human development. The purpose of the present study was to review the scientific literature regarding palliative care to adolescents with cancer. This study is a literature review, which data collection was performed using Lilacs, Medline, and PsycInfo, in addition to non-systematic databases. An analysis of the manuscripts revealed three themes: adolescence and its different definitions; the particularities of adolescents with cancer; and palliative care to adolescents with cancer. The study showed there is a scarcity of evidenced-based research defining the panorama of symptoms affecting the quality of life during palliative care and an absence of specific programs in the stage of fast changes that, alone, demand for adaptive efforts.
Sasaki, Tsubasa; Ohta, Syuji; Seki, Nobuhiko; Eguchi, Kenji
A team approach is efficient in palliative care for cancer patients. People suffered from cancer have a right to receive high-quality palliative care earlier in cancer treatment. In Japan the National Act for Strategy against Cancer was enacted in 2007. Systematic educational programs supported by the Ministry of Health Labor and Welfare has been conducted for medical staffs, home care staffs, local pharmacists, care managers etc. at core institutes in each district. Pain control is still major target for cancer palliative medicine. Recently various types of opioids can be used routinely in daily clinical setting for Japanese cancer patients. Complementary and alternative medicine (CAM) may also effective in some patients but further study for proving scientific evidence in CAM should be warranted. Tailor-maid pain control will be established in the near future with molecular based pharmacogenomics.
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.
Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco
In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction.
The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its "opposite", the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term "acceptance" of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words "accept or acceptance" with the subject headings "terminal care or palliative care or hospice care", and restricting the search to English language articles in clinical journals discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. This paper focuses on the theme of acceptance as integral to palliative care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare workers, and acceptance as a facilitator of care. For patients and families, death acceptance is a goal that they can be helped to attain; for palliative care staff, acceptance of dying is a personal quality that is a precondition for effective practice. Acceptance not only facilitates the dying process for the patient and family, but also renders care easier. The analysis investigates the intertextuality of these themes with each other and with previous texts. From a Foucauldian perspective, I suggest that the discourse on acceptance of dying represents a productive power, which disciplines patients through apparent psychological and spiritual gratification, and encourages participation in a certain way to die.
Coats, Heather; Paganelli, Tia; Starks, Helene; Lindhorst, Taryn; Starks Acosta, Anne; Mauksch, Larry; Doorenbos, Ardith
There is a known shortage of trained palliative care professionals, and an even greater shortage of professionals who have been trained through interprofessional curricula. As part of an institutional Palliative Care Training Center grant, a core team of interprofessional palliative care academic faculty and staff completed a state-wide palliative care educational assessment to determine the needs for an interprofessional palliative care training program. The purpose of this article is to describe the process and results of our community needs assessment of interprofessional palliative care educational needs in Washington state. We approached the needs assessment through a cross-sectional descriptive design by using mixed-method inquiry. Each phase incorporated a variety of settings and subjects. The assessment incorporated multiple phases with diverse methodological approaches: a preparatory phase-identifying key informants; Phase I-key informant interviews; Phase II-survey; and Phase III-steering committee endorsement. The multiple phases of the needs assessment helped create a conceptual framework for the Palliative Care Training Center and developed an interprofessional palliative care curriculum. The input from key informants at multiple phases also allowed us to define priority needs and to refine an interprofessional palliative care curriculum. This curriculum will provide an interprofessional palliative care educational program that crosses disciplinary boundaries to integrate knowledge that is beneficial for all palliative care clinicians. The input from a range of palliative care clinicians and professionals at every phase of the needs assessment was critical for creating an interprofessional palliative care curriculum.
Heiskanen, Tarja; Hamunen, Katri; Hirvonen, Outi
Palliative pain management is usually successful, if the medication is strengthened in a stepwise manner in accordance with pain intensity, and initiation of a strong opioid is not delayed. Finding of a sufficiently effective dose of the opioid drug with simultaneous management of adverse effects requires continuous pain assessment and patient monitoring. In many cases it is possible to enhance analgesia by supplementing the medication with an antidepressant or an antiepileptic along with the opioid and paracetamol or the analgesic. Palliative radiotherapy will relieve tissue injury pain caused by bone metastases and soft tissue tumors as well as pain due to the possible nerve entrapments caused by them.
Chover-Sierra, Elena; Martínez-Sabater, Antonio; Lapeña-Moñux, Yolanda Raquel
Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in final stages of their life. Nurses need to acquire specific knowledge and abilities to provide quality palliative care. Palliative Care Quiz for Nurses is a questionnaire that evaluates their basic knowledge about palliative care. The Palliative Care Quiz for Nurses (PCQN) is useful to evaluate basic knowledge about palliative care, but its adaptation into the Spanish language and the analysis of its effectiveness and utility for Spanish culture is lacking. To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses. The Palliative Care Quiz for Nurses-Spanish Version (PCQN-SV) was obtained from a process including translation, back-translation, comparison with versions in other languages, revision by experts, and pilot study. Content validity and reliability of questionnaire were analyzed. Difficulty and discrimination indexes of each item were also calculated according to Item Response Theory (IRT). Adequate internal consistency was found (S-CVI = 0.83); Cronbach's alpha coefficient of 0.67 and KR-20 test result of 0,72 reflected the reliability of PCQN-SV. The questionnaire had a global difficulty index of 0,55, with six items which could be considered as difficult or very difficult, and five items with could be considered easy or very easy. The discrimination indexes of the 20 items, show us that eight items are good or very good while six items are bad to discriminate between good and bad respondents. Although in shows internal consistency, reliability and difficulty indexes similar to those obtained by versions of PCQN in other languages, a reformulation of the items with lowest content validity or discrimination indexes and those showing difficulties with their comprehension is an aspect to take into account in order to improve the PCQN-SV. The PCQN-SV is a useful Spanish language
Full Text Available The management of non-small-cell-lung-cancer (NSCLC has evolved into a multidisciplinary team approach that traditionally has involved medical oncology, radiation oncology and thoracic surgery. However, in the era of personalized medicine the importance of molecular diagnostics requires adequate tissue for histologic subtyping and molecular testing and thus requires the engagement of other subspecialties such as pathology, respirology and interventional radiology. Unfortunately in 2014 the majority of patients presenting with NSCLC will succumb to their disease and the early integration of palliative care into the treatment strategy will improve the quality of life (QoL and end of life (EOL care of our patients and may in fact improve their overall survival.
The mobile palliative care and support team nurse works in different departments within the hospital. The clinical situation of a patient enables the team to identify in what ways she is declining and thereby participate in the care management in order to favour the patient's return home.
Hasselaar, J.; van Gurp, J.; van Selm, M.; Schers, H.J.; van Leeuwen, E.; Vissers, K.; van den Hoven, J.; Doorn, N.; Swierstra, T.; Koops, B.J.; Romijn, H.
Palliative care involves the care for patients with a life threatening disease, often advanced cancer, aiming at an optimal quality of life for the patient and his/her family. Although many patients with advanced cancer live at home in the last phase of disease, hospital transfers are often
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.
Nagington, Maurice; Luker, Karen; Walshe, Catherine
Ethical care is beginning to be recognised as care that accounts for the views of those at the receiving end of care. However, in the context of palliative and supportive district nursing care, the patients' and their carers' views are seldom heard. This qualitative research study explores these views. Data were collected through semi-structured interviews with 26 patients with palliative and supportive care needs receiving district nursing care, and 13 of their carers. Participants were recruited via community nurses and hospices between September 2010 and October 2011. Post-structural discourse analysis is used to examine how discourses operate on a moral level. One discourse, 'busyness', is argued to preclude a moral form of nursing care. The discourse of friendship is presented to contrast this. Discussion explores Gallagher's 'slow ethics' and challenges the currently accepted ways of measuring to improve quality of care concluding that quality cannot be measured.
Sigaard, Jarl Voss; Dinesen, Birthe Irene
Background: Placebo effects are positive treatment effects that occur because of the psycho-social context around the therapy. Such effects are well documented in pain treatment, as well as in the treatment of other common symptoms. Specialized Palliative Care focuses on the relief of pain...... and other symptoms in terminally ill cancer patients. Aim: The aim of this study was to explore whether and/or how a Specialized Palliative Care Team might contribute to the creation of placebo effects. Methods: The study was conducted as a qualitative study using a phenomenological/ hermeneutic approach....... A literature review was carried out to identify state-of-the-art knowledge about placebo effects. A triangulation of data collection techniques was used, including participant observations (n= 8.6 hours) and a focus group interview with 7 members of the Specialized Palliative Care Team. Observations from six...
Music therapy is increasingly becoming an intervention used in palliative care settings around the globe. While the specialty of palliative care music therapy is relatively young having emerged in the late 1980s, there is a strong and growing body of evidence demonstrating its efficacy in assisting a variety of issues common at end-of-life. There are multiple music therapy techniques that are implemented with clients in palliative care and they can be categorized in four broad areas: receptive, creative, recreative and combined. These techniques will be presented with respect to their development by clinicians as supported by the descriptive and research literature. Information is also provided on the use of music therapy in facilitating the grieving and bereavement process. Copyright © 2015 Elsevier Ltd. All rights reserved.
Cook, A M; Finlay, I G; Edwards, A G; Hood, K; Higginson, I J; Goodwin, D M; Normand, C E; Douglas, H R
A systematic review into palliative care team effectiveness was undertaken which has, inherent in its methodology, grey literature searching. Over 100 letters were written to a systematically chosen range of service providers, commissioners, and experts in combination with requests for information in six UK national cancer/palliative care organization newsletters. In addition, the System for Information on Grey Literature (SIGLE ) database was searched. As a result, 25 document hard copies were received. The documents were, in all but one case (this one study was also highlighted by the SIGLE search), not relevant as they were predominated by annual reports, service descriptions, and needs assessments. In terms of obtaining unpublished studies for possible inclusion in the review, this comprehensive search was unsuccessful and, therefore, it would appear that grey literature searching is not a useful tool in palliative care systematic reviews.
... page: https://medlineplus.gov/news/fullstory_162160.html Palliative Care Raises Quality of Life, But Doesn't Extend ... 22, 2016 TUESDAY, Nov. 22, 2016 (HealthDay News) -- Palliative care can ease the burden that a serious illness ...
Kathpalia, Priya; Smith, Alexander; Lai, Jennifer C
AIM To evaluate use of palliative care services in patients with end-stage liver disease who do not have access to liver transplant. METHODS Evaluated were end-stage liver disease patients who were removed from the liver transplant wait-list or died prior to transplant at a single transplant center over a 2-year period. Those who were removed due to noncompliance or ultimately transplanted elsewhere were excluded from this study. Patient characteristics associated with palliative care consultation were assessed using logistic regression analysis. RESULTS Six hundred and eighty-three patients were listed for liver transplant in 2013-2014 with 107 (16%) dying (n = 62) or removed for clinical decompensation prior to liver transplant (n = 45): Median age was 58 years, and the majority were male (66%), Caucasian (53%), had Child C cirrhosis (61%) or hepatocellular carcinoma (52%). The palliative care team was consulted in only 18 of the 107 patients (17%) who died or were removed, 89% of which occurred as inpatients. Half of these consultations occurred within 72 h of death. In univariable analysis, patients of younger age, white race, and higher end-stage liver disease scores at time of listing and delisting were more likely to receive palliative care services. Only younger age [Odds ratio (OR) = 0.92; P = 0.02] and Caucasian race (OR = 4.90; P = 0.02) were still associated with integration of palliative care services through multivariable analysis. CONCLUSION Palliative care services are grossly underutilized in older, non-white patients with cirrhosis on the liver transplant wait-list. We encourage early integration of these services into clinical decision-making in the transplant population, with further studies aimed at understanding barriers to consultation. PMID:27683638
Klarare, Anna; Rasmussen, Birgit H; Fossum, Bjöörn; Fürst, Carl Johan; Hansson, Johan; Hagelin, Carina Lundh
Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care. Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC). A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes. Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions. Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.
Baile, Walter F; Walters, Rebecca
We introduce the technique of sociodrama, describe its key components, and illustrate how this simulation method was applied in a workshop format to address the challenge of discussing transition to palliative care. We describe how warm-up exercises prepared 15 learners who provide direct clinical care to patients with cancer for a dramatic portrayal of this dilemma. We then show how small-group brainstorming led to the creation of a challenging scenario wherein highly optimistic family members of a 20-year-old young man with terminal acute lymphocytic leukemia responded to information about the lack of further anticancer treatment with anger and blame toward the staff. We illustrate how the facilitators, using sociodramatic techniques of doubling and role reversal, helped learners to understand and articulate the hidden feelings of fear and loss behind the family's emotional reactions. By modeling effective communication skills, the facilitators demonstrated how key communication skills, such as empathic responses to anger and blame and using "wish" statements, could transform the conversation from one of conflict to one of problem solving with the family. We also describe how we set up practice dyads to give the learners an opportunity to try out new skills with each other. An evaluation of the workshop and similar workshops we conducted is presented. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Harrison Dening, Karen
Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted.
Engelman, Suzanne R
A growing body of research and clinical reports support the benefits of utilizing animal-assisted therapy (AAT) as a complementary, transdisciplinary treatment intervention in medical settings. However, fewer articles are found demonstrating AAT's use in palliative care settings. This article is a study of the effects of AAT in palliative care situations, presenting one anecdotal clinical vignette. In this way, the efficacy of this technique in decreasing patient pain, thereby increasing patient quality of life, and lowering staff stress levels may be illustrated.
Manjiri P Dighe
Full Text Available Recent advances in medical care have improved the survival of newborn babies born with various problems. Despite this death in the neonatal intensive care unit (NICU is an inevitable reality. For babies who are not going to "get better," the health care team still has a duty to alleviate the physical suffering of the baby and to support the family. Palliative care is a multidisciplinary approach to relieve the physical, psycho social, and spiritual suffering of patients and their families. Palliative care provision in the Indian NICU settings is almost nonexistent at present. In this paper we attempt to "build a case" for palliative care in the Indian NICU setting.
Slomka, Jacquelyn; Prince-Paul, Maryjo; Webel, Allison; Daly, Barbara J
People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care will require changing public perceptions and individuals' views in this high-risk population.
Bergenholtz, Heidi; Hølge-Hazelton, Bibi; Jarlbaek, Lene
Hospitals have a responsibility to ensure that palliative care is provided to all patients with life-threatening illnesses. Generalist palliative care should therefore be acknowledged and organized as a part of the clinical tasks. However, little is known about the organization and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations. Results from three different data sets, all aiming to evaluate generalist palliative care, were compared retrospectively. The data-sets derived from; 1. a national accreditation of the hospital, 2. a national survey and 3. an internal self-evaluation performed in the hospital. The data were triangulated to investigate the organization and evaluation of palliative care in order to identify concordances and/or discrepancies. The triangulation indicated poor validity of the results from existing methods used to evaluate palliative care in hospitals. When the datasets were compared, several discrepancies occurred with regard to the organization and the performance of generalist palliative care. Five types of discrepancies were found in 35 out of 56 sections in the fulfilment of the national accreditation standard for palliative care. Responses from the hospital management and the department managements indicated that generalist palliative care was organized locally--if at all--within the various departments and with no overall structure or policy. This study demonstrates weaknesses in the existing evaluation methods for generalist palliative care and highlights the lack of an overall policy, organization and goals for the provision of palliative care in the hospital. More research is needed to focus on the organization of palliative care and to establish indicators for high quality palliative care provided by the hospital. The lack of valid indicators
At the Institute for Palliative Medicine (IPM) in San Diego, medical residents are re-tooling for one of the most essential aspects of medicine: caring for seriously ill patients. “The goal is to teach them the core competencies in palliative care,” explained Dr. Charles von Gunten, the institute’s provost. |
Recognition of the importance of 'cultural competence' is now central to health care policy and to nurse education and training across the international spectrum. Detailed engagement with models of cultural competence is comparatively recent in palliative care nursing. This article presents the findings from a development project on elders and carers from 'minority ethnic' groups, funded by the Department of Health, to increase awareness of palliative care and to improve understanding of the needs of these groups of service users. The article describes the experiences of nurses involved in the delivery of palliative care who were interviewed in focus groups as a part of the project. It draws attention to the complicated relationships between cultural knowledge and practice and to the non-rational and visceral dimensions of intercultural care. These aspects of nursing are marginalised in current approaches to cultural competence, which emphasise the rational acquisition and application of cultural knowledge and skills by practitioners. It is suggested that recognition of these marginalised experiences can contribute to the development of new approaches to intercultural nursing that are also more attuned to the ethos and values of palliative care.
María del Mar Alfaya Góngora
Full Text Available Objectives:To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants.Methods:A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed.Results:The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources.Conclusion:Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.
Groenvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette
BACKGROUND: Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. AIM: To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. SETTING/PARTICIPANTS: The Danish...... Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients...
Full Text Available Context: Patients diagnosed with a disease like cancer require not only physical control of disease but also they need psychological reassurance, social and spiritual support in coming to terms with their disease. Nurses working in the specialized cancer hospitals play a significant role in the care of terminally ill patients. They must be knowledgeable, skilled and sensitive to the needs of these patients and their families in order to provide active, holistic care. Aims: In this study, we attempted to assess the level of knowledge about palliative care among nurses working in the oncology department using a self administered structured questionnaire and also to assess the effectiveness of information booklet designed on various aspects of palliative care on their knowledge. Settings and Design: Indo American Cancer Hospital, Hyderabad, AP, India. The design adopted for this study was One Group pretest - posttest, pre - experimental design. Materials and Methods: Hundred nurses working in Indo American Cancer Hospital, Hyderabad, AP, India were selected by using the non probability purposive sampling technique. A structured self administered questionnaire was prepared and administered as a pretest. An information booklet was developed pertaining to the general concepts of palliative care, care components (physical, social, emotional and spiritual and role of the nurse in palliative care and it was given to the participants. As a post test, the same questionnaire was re-administered after four days to the same study subjects. Pretest and post test knowledge scores were compared and the findings were analyzed statistically. Statistical analysis used : Microsoft Excel and Statistical Package for Social Science package. Results: The post test scores were significantly higher than the pretest knowledge scores, which indicate that the developed information booklet regarding palliative care was highly effective in enhancing the knowledge levels of the
Eva K Masel
Full Text Available The aims of the study were to examine a patients' knowledge of palliative care, b patients' expectations and needs when being admitted to a palliative care unit, and c patient's concept of a good palliative care physician.The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques.The results revealed four themes: (1 information about palliative care, (2 supportive care needs, (3 being treated in a palliative care unit, and (4 qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient's language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment.The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient's needs will enable medical teams to improve professional and individualized care.
Conclusion: Life and work experience improve the accuracy of medical staff in providing hospice palliative care. A culture-based, case-oriented continuing education program and a timely revision of the Hospice Palliative Care Article are recommended to increase the consistency between the principle and the practice of hospice palliative care.
Stanley S.L. Tsai
Conclusion: A multimodule curriculum of palliative care for medical students can significantly improve their knowledge on principles of clinical management and beliefs about ethical decision-making in palliative care. As for changes in beliefs about ethical decision-making in palliative care, continued ethical and clinical training is required.
Neergaard, Mette Asbjoern; Olesen, Frede; Jensen, Anders Bonde
, and 15 home care nurses) were interviewed. RESULTS: Two main categories of problems were identified: (1) the organization of palliative home care (need for proactive planning from the start of the palliative trajectory, clear distribution of tasks, advancement of more efficient communication pathways......, and improved accessibility to all health professionals) and (2) interaction between health professionals (increased knowledge of and respect for the competencies of other health occupations and individuals). CONCLUSION: The study indicates problems with respect to both the organization of the basic level...... palliative home care and the working culture among health professionals. The main issues: distribution of tasks, information exchange, availability, respect, and personal acquaintance are pivotal to improve the delivery of palliative home care, to training in palliative care and warrant future research....
Kaasalainen, Sharon; Strachan, Patricia H; Brazil, Kevin; Marshall, Denise; Willison, Kathleen; Dolovich, Lisa; Taniguchi, Alan; Demers, Catherine
The purpose of this study was to explore the care processes experienced by community-dwelling adults dying from advanced heart failure, their family caregivers, and their health-care providers. A descriptive qualitative design was used to guide data collection, analysis, and interpretation. The sample comprised 8 patients, 10 informal caregivers, 11 nurses, 3 physicians, and 3 pharmacists. Data analysis revealed that palliative care was influenced by unique contextual factors (i.e., cancer model of palliative care, limited access to resources, prognostication challenges). Patients described choosing interventions and living with fatigue, pain, shortness of breath, and functional decline. Family caregivers described surviving caregiver burden and drawing on their faith. Health professionals described their role as trying to coordinate care, building expertise, managing medications, and optimizing interprofessional collaboration. Participants strove towards 3 outcomes: effective symptom management, satisfaction with care, and a peaceful death.
Claire Visser; Gina Hadley; Bee Wee
hTere has been a paradigm shitf in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically signiifcant beneifts may be marginal and may not be related to clinical meaningfulness. hTe typical treatmentvs. placebo comparison necessitated by ‘gold standard’ randomised controlled trials (RCTs) is not necessarily applicable. hTe complex multimorbidity of end of life care involves considerations of the patient’s physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be diffcult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. hTis review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. hTe future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a ‘mixed methods approach’ are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes.
Klarare, Anna; Hagelin, Carina Lundh; Fürst, Carl Johan; Fossum, Bjoorn
Background: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned. Aim: The aim was to explore team interaction among team members in special...
Full Text Available The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice.
Ayed, Ahmad; Sayej, Sumaya; Harazneh, Lubna; Fashafsheh, Imad; Eqtait, Faeda
Background: Palliative care (PC) is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems like physical, psychosocial and…
Robinson, Carole A.; Pesut, Barbara; Bottorff, Joan L.
Context: Growing concern exists among health professionals over the dilemma of providing necessary health care for Canada's aging population. Hospice palliative services are an essential need in both urban and rural settings. Rural communities, in particular, are vulnerable to receiving inadequate services due to their geographic isolation.…
Groot, M.M.; Derksen, E.W.C.; Crul, B.J.P.; Grol, R.P.T.M.; Vernooij-Dassen, M.J.F.J.
OBJECTIVE: To gain insight into the experiences of a palliative care patient and her husband who were living on borrowed time. METHODS: A qualitative single case design was used. Systematic content analysis of the interview data, obtained in an in-depth semi-structured interview, from the husband an
Gavrin, Jonathan R
The web site of the Center to Advance Palliative Care is reviewed. This is an excellent resource containing resources that address financial tutorials and customizable Excel worksheets, development and marketing tools, particularly the decision checklists, satisfaction tools, the information on tracking and reporting outcomes, bereavement tools and a press kit.
Departments of *Radiotherapy, + Nursing and ** Anaesthesia, College of Medicine, University oflbadan. ABSTRACT. Bacground: A palliative care and Hospice service is a neglected aspect of medical discipline ... 60% of new cases will occur in the less developed parts of ..... technology intervention and high cost of drugs 9.
Jünger, S; Pestinger, M; Elsner, F; Krumm, N; Radbruch, L
Team work is considered a central component of palliative care. Within this comparatively young field of medicine, the emergence of new institutions (eg, palliative care units) highlights the challenge of establishing a completely new team. This study focuses on the factors, which enhance both the success and outcome criteria of good team work from the perception of team members in a palliative care unit. The palliative care team at the University Hospital of Aachen (n = 19) was interviewed 1 year after the unit's startup by the means of semistructured interviews. Interview texts were analysed using qualitative content analysis. Factors crucial to cooperation in the team members' views were close communication, team philosophy, good interpersonal relationships, high team commitment, autonomy and the ability to deal with death and dying. Moreover, close communication was by far the most frequently mentioned criteria for cooperation. Team performance, good coordination of workflow and mutual trust underpin the evaluation of efficient team work. Inefficient team work is associated with the absence of clear goals, tasks and role delegation, as well as a lack of team commitment. In a new team, close communication is particularly important for staff as they reorientate themselves to the dynamics of a new peer group. The results confirm the overwhelming importance of clarity, commitment and close, positive exchange among team members for successful team work.
Grogan, Eleanor; Paes, Paul; Peel, Tim
There is little in the literature describing hospital specialist palliative care units (PCUs) within the NHS. This paper describes how specialist PCUs can be set up within and be entirely funded by the NHS, and outlines some of the challenges and successes of the units. Having PCUs within hospitals has offered patients increased choice over their place of care and death; perhaps not surprisingly leading to a reduced death rate in the acute hospital. However, since the opening of the PCUs there has also been an increased home death rate. The PCUs are well received by patients, families and other staff within the hospital. We believe they offer a model for excellence in cost-effective inpatient specialist palliative care within the NHS.
Morrison, R Sean; Meier, Diane E
The elimination of suffering and the cure of disease are the fundamental goals of medicine. While medical advances have transformed previously fatal conditions such as cancer and heart disease into illnesses that people can live with for many years, they have not been accompanied by corresponding improvements in the quality of life for these patients and their families. Living with a serious illness should not mean living in pain or experiencing symptoms like shortness of breath, nausea, or fatigue. Yet, multiple studies over the past decade suggest that medical care for patients with advanced illness is characterized by inadequately treated physical distress; fragmented care systems; poor communication between doctors, patients, and families; and enormous strains on family caregiver and support systems. Palliative care is interdisciplinary care focused on relief of pain and other symptoms and support for best possible quality of life for patients with serious illness, and their families. It is appropriate at the point of diagnosis of a serious illness. It goes beyond hospice care to offer patients and their families treatments focused on improving quality of life while they are receiving life-prolonging and curative treatments. Palliative care programs have been shown to reduce symptoms, improve doctor-patient-family communication and satisfaction with care, as well as enhance the efficiency and effectiveness of hospital services. In the last 5 years alone the number of palliative care programs has more than doubled. This growth is in response to the increasing numbers and needs of Americans living with serious, complex and chronic illnesses, and the realities of the care responsibilities faced by their families. In order to ensure that all persons with serious illness and their families receive the quality of care they deserve, palliative care must become an integral part of the U.S. healthcare landscape. Specifically, persons facing serious illness and their
Miner, Thomas J
Excellence as a surgeon requires not only the technical and intellectual ability to effectively take care of surgical disease but also an ability to respond to the needs and questions of patients. This article provides an overview of the importance of communication skills in optimal surgical palliation and offers suggestions for a multidisciplinary team approach, using the palliative triangle as the ideal model of communication and interpersonal skills. This article also discusses guidelines for advanced surgical decision making and outlines methods to improve communication skills.
Broadley, K E; Kurowska, A; Dick, R; Platts, A; Tookman, A
Transcatheter arterial embolization (TCAE) is a well recognized radiological technique that has been used for over 25 years. It is a method of diminishing blood flow through selected vessels by inserting haemostatic material under angiographic control. The procedure is performed under local anaesthetic through a femoral or, occasionally, an axillary approach. We present our experience of the use of TCAE in the management of pain and haemorrhage in three hospice inpatients in whom other options had been exhausted. The use of TCAE as a technique for the palliation of these symptoms in the hospice setting is discussed.
Harrison, Nadine; Cavers, Debbie; Campbell, Christine; Murray, Scott A
The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification. To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death. Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed. Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed. In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital. Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.
A. P. Rebrov
Full Text Available Objective: to estimate the rehabilitation or palliative care needs of patients with spondyloarthritis (SpA and to determine the specific features of palliative care in them.Subjects and methods. The literature on the investigated problem was analyzed using the electronic resources of Pubmed, Medline, and E-library. The authors obtained data based on the prospective follow-up of 182 patients with SpA in January 2010 to March 2014 (PROGRESS study. The degree of axial skeletal immobility (Bath Ankylosing Spondylitis Metrology Index (BASMI was estimated; the presence of irreversible organ changes (uveitis-induced visual loss, chronic renal failure due to amyloidosis, etc., and X-ray changes of the joints and spine were specified. The number of people with varying degrees of disability and that of those needing surgery were taken into account.Results. The investigation showed that mobility changes and disability might progress rapidly in patients with SpA: in 2010 to 2014, the number of disable patients with SpA increased from 20.5 to 48.9%. In 2014, more than one third (37.8% of the patients needed rehabilitation and orthopedic correction; 5 (2.74% patients had IV functional class and required nursing and palliative care.Conclusion. SpA is a chronic disease that can lead to a rapid functional impairment. Chronic pain, loss of mobility, vision deterioration, amyloidosis, and other causes show the need for palliative care in some patients with SpA. Special tools for evaluating the health status of patients with SpA should be elaborated to determine whether the patient needs rehabilitation and palliative care.
Sima Besharat; Ali Jabbari; Shahryar Semnani; Abbasali Keshtkar; Jeran Marjani
AIM: To determine the outcome of esophageal cancer patients referred for palliative care, in Gorgan and Gonbad gastrointestinal clinics, northeast of Iran.METHODS: This cross-sectional study was done on inoperable esophageal cancer cases referred to gastrointestinal clinics in Gorgan and Gonbad city (2005-2006). Demographic data were collected during the procedure and cases were followed up every one month. Improvement proportion was calculated with 95% confidence interval, to determine the rate of improvement. Survival analysis and Kaplan-Meier methods were used to estimate the duration of palliative care effectiveness.RESULTS: We recruited 39 cases into the study. Squamous cell carcinoma was the most prevalent (92.3%). The middle third of the esophagus was involved predominantly (51.3%). Dilation was the most preferred method (89.7%) and stenting was done in 4 cases. Decreasing dysphagia score was not related to palliation method or pathology type of carcinoma. Age of the patients was significantly related to the improvement of dysphagia score. Mean survival time was 137.6d and median was 103d.CONCLUSION: Results of this study showed a low survival rate after palliative care in esophageal cancer cases despite dysphagia scores' improvement after dilating or stenting.
This case study examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area (GTA). Because of changing demographic trends and ethnic minorities underutilizing hospice palliative care services, this research examined the current state of culturally competent care in a hospice setting, and the challenges to providing culturally competent care in a hospice in the GTA. A case study was conducted with a hospice and included in-depth interviews with 14 hospice volunteers. The findings reveal that volunteers encountered cultural clashes when their level of cultural competency was weak. Second, volunteers revealed there was a lack of adequate cultural competency training with their hospice, and finally, there was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.
McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin
Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…
Downing, Robin; Adams, Valarie Hajek; McClenaghan, Ann P
Hygiene, comfort, and safety during pet palliative care and hospice are usually straightforward. The veterinary health care team must coordinate care to ensure that the pet and the family are fully informed and engaged in the process. End-of-life issues, euthanasia, and death are typically not everyday concerns for the pet owner. Pet owners and veterinary patients rely on the veterinary health care team to help create the structure within which the pet will die. The veterinary team can give the family-pet unit the gift of structure and multifaceted comfort. The veterinary profession must take seriously this unique niche of care. 2011 Elsevier Inc. All rights reserved.
Physical pain is well analysed by medical science, but still often neglected by the practicians. It is entangled with moral suffering at the end of life. The distinction between these two fundamental experiences is difficult but necessary for the care of patients. The concept of palliative care is far from being integrated by health professionals as well as by everybody, because it questions our finitude, the signification of life and human solidarity.
Trovo de Araújo, Monica Martins; da Silva, Maria Júlia Paes
The objective of this study is to verify the relevance and utilization of communication strategies in palliative care. This is a multicenter qualitative study using a questionnaire, performed from August of 2008 to July of 2009 with 303 health care professionals who worked with patients receiving palliative care. Data were subjected to descriptive statistical analysis. Most participants (57.7%) were unable to state at least one verbal communication strategy, and only 15.2% were able to describe five signs or non-verbal communication strategies. The verbal strategies most commonly mentioned were those related to answering questions about the disease/treatment. Among the non-verbal strategies used, the most common were affective touch, looking, smiling, physical proximity, and careful listening. Though professionals have assigned a high degree of importance to communication in palliative care, they showed poor knowledge regarding communication strategies. Final considerations include the necessity of training professionals to communicate effectively in palliative care.
Neergaard, Mette Asbjørn; Jensen, Anders Bonde; Olesen, Frede
sectors.METHOD. A number of focus group interviews were conducted with three types of subgroups: 1) Bereaved relatives, 2) GPs and 3) Various health-care-professionals, namely community nurses, hospital physicians and GPs. The interviews were transcribed and analysed according to a phenomenological......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...
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...
Knapp, Caprice; Madden, Vanessa; Wang, Hua; Curtis, Charlotte; Sloyer, Phyllis; Shenkman, Elizabeth
National experts have recommended that children with life-limiting illnesses receive integrated palliative and medical care. These programs offer a variety of services, including music therapy. Using survey data from parents whose were enrolled in Florida's Partners in Care: Together for Kids (PIC:TFK) program, this study investigates parents' experiences with music therapy. About 44% of children with life-limiting illnesses and 17% of their siblings used music therapy. For children who used music therapy, multivariate results suggest that their parents were 23 times as likely to report satisfaction with the overall PIC:TFK program (P music therapy. Pediatric palliative care programs should include music therapy, although recruiting licensed music therapists may be challenging.
Naylor, Wayne A
Wound management in palliative patients is often a very challenging area of care. There are many unique issues that can combine to produce complicated wound management scenarios, including the types of wounds and wound symptoms most commonly affecting palliative care patients, as well as the presence of concurrent disease and associated treatment. Problems exist with the availability of suitable dressings and balancing life expectancy with the goals of wound care. A significant, and possibly under-recognized, issue is the emotional and social distress experienced by these patients, which can be directly attributed to their wound. These problems must all be recognized and addressed in order to manage wounds effectively in this patient population. This article aims to explore these issues and offer advice on the management of wound-related symptoms, with the ultimate goal of improving patients' quality of life.
Nagamatsu, Yasuko; Nakayama, Yukiko; Clayson, Helen; Natori, Yuji; Ohata, Misato; Matsuura-Moriguchi, Shino; Porter, Sarah E
This study evaluated the effect of an Educational PROGRAM on Palliative Care for MPM for Nurses in Japan. The 5-h program consisted of lectures and care planning group work. This study used a pretest-posttest design with a single cohort of nurses and included a Difficulties in Palliative Care for Patients with MPM (DPCMPM) Scale with 15 items. The pre- and posttest scores were compared using a t-test. We included 27 female nurses with a mean of 14.4 years of nursing experience. In 12 of 15 DPCMPM items, the posttest difficulty scores were lower than the pretest scores. Participants highly evaluated the program for validity, clarity, clinical usefulness, and the facilitators. The Palliative Care for MPM Handbook for Nurses was developed as an educational tool for clinical settings. The Educational PROGRAM on Palliative Care for MPM for Nurses was effective in reducing nursing difficulties.
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 v......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...... sectors.METHOD. A number of focus group interviews were conducted with three types of subgroups: 1) Bereaved relatives, 2) GPs and 3) Various health-care-professionals, namely community nurses, hospital physicians and GPs. The interviews were transcribed and analysed according to a phenomenological...
Tanneberger, S; Köhler, U
In the light of the unprecedented demographic changes in many countries it is important to review and adapt existing strategies for giving old and incurable patients the adequate health care. Based on available data the importance of companion animals needs to be considered as part of individual care planning. Despite intensive research in other areas of health care, there is limited data concerning the use of companion animals in palliative care. The field demands much more recognition. For many people companion animals can be a chance for better quality of life.
Williams-Reade, Jackie; Lamson, Angela L; Knight, Sharon M; White, Mark B; Ballard, Sharon M; Desai, Priti P
Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center. In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families. Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support. The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.
Pesut, Barbara; Beswick, Frances; Robinson, Carole A; Bottorff, Joan L
Increasingly, palliative care is being referred to as an essential programme and in some cases as a human right. Once it is recognized as such, it becomes part of the lexicon of social justice in that it can be argued that all members of society should have access to such care. However, this begs the question of how that care should be enacted, particularly in rural and remote areas. This question illustrates some of Friedrich Hayek's critiques of social justice. Hayek has likened social justice to a 'moral stone' arguing that social justice is meaningless to the extent that society is impersonal and as such cannot be just, only those individuals who make up that society can be just. When responsibility for justice is assigned to an impersonal society, ideas of social justice can become a clarion call for whom no one is directly accountable. This opens the door for questionable macro-level political agendas that have no capacity to enact the ideal, and worse, may suppress individual moral acts towards the desired end. Further, acts of interference at the macro level with the ideal of equal opportunity run the risk of disadvantaging other members of society. Instead, he has argued that a better approach lies in finding ways to induce and support individual moral acts that promote the human good. Hayek's arguments are particularly compelling for rural palliative care. In this paper we draw upon data from an ethnographic study in rural palliative care to illustrate the potential misfit between the ethical ideal of palliative care as expressed by rural participants and the narratives of social justice.
Full Text Available The term burnout, meaning ”professional exhaustion”, was introduced by Herbert Freudenberger in 1974. On May 21, 2014 , the World Health Assembly, the decisional organ of the World Health Organization, voted the resolution for the integration and development of the capacity of palliative care services as a constituent part of the health systems. The resolution represents a major pace in the development of palliative care at world level, once the ministers responsible for the field took upon themselves - by means of information and training programs - the task of services’ development, mainly at community level, the support from the part of the next of kins, the elaboration of educational programs, of guides and clinical protocols for specialists, of instruments for the monitorization of the quality of services provided, an easier access of patients to medication, as well as partnerships with the civil society. Burnout is a state of emotional, mental and physical overfatigue caused by excessive and prolongued stress. It is installed mainly when the person affected with it feels care-worn and uncapable of fulfilling his/her usual duties. As the stress continues, he/she will come to lose the interest or motivation which made him/her assume a certain position in the organizational hierarchy. The burnout phenomenon includes three components: emotional exhaustion, depersonalization and lack of professional accomplishment. The main observations on the phenomenon indicate that, apparently, the burnout level in palliative care is not higher than in other services, such as intensive therapy or surgery. Nevertheless, mention should be made of a characteristic of the palliative care services which influences the burnout level, namely the emotional relation created between the patient and the medical team, as a result of the prolongued duration of the care services
Mitchell, Gary; Agnelli, Joanne; McGreevy, Jessie; Diamond, Monica; Roble, Herlindina; McShane, Elaine; Strain, Joanne
The terms palliative and end of life care are often used interchangeably and healthcare practitioners may perceive that palliative care is only appropriate during the terminal stages of an illness. This article, the first of two parts, provides healthcare practitioners with an overview of the concept of palliative care. It explains how this can be differentiated from end of life care and how it should be commenced in a timely manner, so that people who are living with dementia can contribute to the planning of their future care and death. The policies and tools used in the provision of palliative and end of life care are discussed, including advance care planning and The Gold Standards Framework. The article is framed in a care home context; there is little research about how to optimise palliative care for people living with dementia in care homes. The second part of this article will discuss end of life care and the best practices for providing end of life care, including nutrition and hydration, oral hygiene, pain management and spiritual care.
Galiana, Laura; Oliver, Amparo; Sansó, Noemí; Benito, Enric
Self-care is a cornerstone issue for those who deal with stressful events, as it is the case of palliative care professionals. It has been related to awareness, coping with death and quality of life, among others, but no measurement instruments have been used in palliative care professionals. This research presents and validates a brief new measure with clinical and psychometric good properties, called Professional Self-Care Scale (PSCS). The PSCS assesses professionals' self-care in three areas: physical self-care, inner self-care, and social self-care. Data come from a cross-sectional survey in a sample of 385 professionals of palliative care. The Mindful Attention Awareness Scale, the Coping with Death Scale, and the Professional's Quality of Life measure were also used. Results of the CFA showed adequate fit (χ2(24, N = 385) = 140.66, p psychometric properties, and thus it could be used as diagnostic instrument when studying professionals' health.
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.
Claxton-Oldfield, Stephen; Claxton-Oldfield, Jane
The goal of this study was to examine the impact of hospice palliative care work on volunteers' lives. In-depth interviews were conducted with 23 direct-patient care volunteers. More than half of the volunteers became involved in hospice palliative care because of their own experiences with family members and/or friends who have died. Most of the volunteers reported that they were different now or had changed in some way since they have been volunteering (e.g., they had grown in some way, have learned how to keep things in perspective). In addition, most of the volunteers felt that their outlook on life had changed since they started volunteering (e.g., they were more accepting of death, and they learned the importance of living one day at a time). Volunteers reported doing a number of different things to prevent compassion fatigue or burnout (e.g., reading a book, listening to music, talking to others, and taking time off from volunteering). Most of the volunteers said that they would tell anyone who might be thinking of volunteering in hospice palliative care that it is a very rewarding activity and/or that they should try it. Finally, many of the volunteers offered suggestions for doing things differently in their programs.
Krause-Parello, Cheryl A; Levy, Cari; Holman, Elizabeth; Kolassa, John E
The United States is home to 23 million veterans. In many instances, veterans with serious illness who seek healthcare at the VA receive care from a palliative care service. Animal-assisted intervention (AAI) is gaining attention as a therapeutic stress reducing modality; however, its effects have not been well studied in veterans receiving palliative care in an acute care setting. A crossover repeated-measures study was conducted to examine the effects of an animal-assisted intervention (AAI) in the form of a therapy dog on stress indicators in 25 veterans on the palliative care service at the VA Eastern Colorado Healthcare System in Denver, CO. Veterans had a visit from a therapy dog and the dog's handler, a clinical psychologist (experimental condition) and an unstructured visit with the clinical psychologist alone (control condition). Blood pressure, heart rate, and the salivary biomarkers cortisol, alpha-amylase, and immunoglobulin A were collected before, after, and 30-minutes after both the experimental and control conditions. Significant decreases in cortisol were found when the before time period was compared to the 30-minutes after time period for both the experimental ( p = 0.007) and control condition ( p = 0.036). A significant decrease in HR was also found when the before time period was compared to the 30-minutes after time period for both the experimental ( p = 0.0046) and control ( p = 0.0119) condition. Results of this study supported that a VA facility dog paired with a palliative care psychologist had a measurable impact on salivary cortisol levels and HR in veterans.
Huffman, Joan L
All surgeons should maintain a lifetime commitment to education and learning. Those who already are in practice need to make the effort to obtain or refresh their education in basic competencies in palliative care and to provide a measured balance between philosophy and practical skills. Many resources and teaching tools are available to assist in this continuing process: surgical peers (and peers from other medical specialties),journals, textbooks, CME conferences, surgical governance and educational organizations, and palliative care websites. A tremendous summary article on palliative care education for surgeons was published recently in JACS. Surgeons must be competent in the following palliative care skills:communication, holistic patient evaluation, control of pain and symptoms,understanding legal/ethical issues, withdrawing care, and the continuum of acute to chronic to terminal care. If they cannot attend to all of these areas individually, they need to be aware of the local, regional, and national resources that are available to assist the patient (or their surrogate decision maker) and themselves in the end-of-life arena. Consultations and referrals should be accomplished in such a manner that the patient does not feel abandoned by his/her surgeon at such a critical point in his/her life. Practicing surgeons also must be involved actively in the education of resident and medical students in didactic and clinical situations. Most importantly, they must model the appropriate behaviors for their charges personally, whether it be in the consultation room breaking bad news compassionately or at the bedside easing the path to the next world. In these golden hours, the educated surgeon who wields new and mighty resources can be the greatest champion of the patient who is at the end of life.
Abernethy Amy P
Full Text Available Abstract Background Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's "grey" palliative care literature and identifying international published literature missing from the electronic indexing systems. The literature was then catalogued and made publicly available through the CareSearch website. Results To date over 2,500 items have been included in the CareSearch database and can be accessed and searched through a publicly available website. Nearly 2,000 items are conference abstracts and 178 are theses or government, organisational and planning documents. A further 410 items relate to articles from palliative journals that are not indexed on a major bibliographic database. The website also provides tools and facilities to support palliative care practice and research. Conclusion CareSearch is a new evidence resource for palliative practitioners, educators and researchers. The palliative community now has access to a more comprehensive literature base as well as a resource that supports the integration of knowledge into practice. This specialised data repository enables users to access information on the body of work that has shaped palliative care development and prevents the potential loss or duplication of research work. It also provides a template for other emerging disciplines to use in capturing their literature and evidence.
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.
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.
Leemans, K.; Cohen, J.; Francke, A.L.; Stichele, R. Vander; Claessen, S.J.J.; Block, L. van den; Deliens, L.
Background: In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive an
Leemans, K.; Cohen, J.; Francke, A.L.; Stichele, R. Vander; Claessen, S.J.J.; Block, L. van den; Deliens, L.
Background: In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive
Jaarsma, Tiny; Beattie, James M.; Ryder, Mary; Rutten, Frans H.; McDonagh, Theresa; Mohacsi, Paul; Murray, Scott A.; Grodzicki, Thomas; Bergh, Ingrid; Metra, Marco; Ekman, Inger; Angermann, Christiane; Leventhal, Marcia; Pitsis, Antonis; Anker, Stefan D.; Gavazzi, Antonello; Ponikowski, Piotr; Dickstein, Kenneth; Delacretaz, Etienne; Blue, Lynda; Strasser, Florian; McMurray, John
Heart failure is a serious condition and equivalent to malignant disease in terms of symptom burden and mortality. At this moment only a comparatively small number of heart failure patients receive specialist palliative care. Heart failure patients may have generic palliative care needs, such as ref
Leemans, K.; Deliens, L.; Block, L. van den; Stichele, R. Vander; Francke, A.L.; Cohen, J.
Background: A feasibility evaluation of a comprehensive quality indicator set for palliative care identified the need for a minimal selection of these indicators to monitor quality of palliative care services with short questionnaires for the patients, caregivers, and family carers. Objectives: To d
Loetz, Cécile; Müller, Jakob; Frick, Eckhard; Petersen, Yvonne; Hvidt, Niels Christian; Mauer, Christine
The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient's needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person's attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one's own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.
Full Text Available The aim of this paper is to discuss and explore the interrelation between two concepts, attachment theory and the concept of spirituality, which are important to palliative care and to founding a multivariate understanding of the patient’s needs and challenges. Both concepts have been treated by research in diverse and multiform ways, but little effort has yet been made to integrate them into one theoretical framework in reference to the palliative context. In this paper, we begin an attempt to close this scientific gap theoretically. Following the lines of thought in this paper, we assume that spirituality can be conceptualized as an adequate response of a person’s attachment pattern to the peculiarity of the palliative situation. Spirituality can be seen both as a recourse to securely based relationships and as an attempt to explore the ultimate unknown, the mystery of one’s own death. Thus, spirituality in the palliative context corresponds to the task of attachment behavior: to transcend symbiosis while continuing bonds and thus to explore the unknown environment independently and without fear. Spiritual activity is interpreted as a human attachment behavior option that receives special quality and importance in the terminal stage of life. Implications for clinical practice and research are discussed in the final section of the paper.
Kelsall, Kay; Brennan, Ebony; Cole, Teresa
This paper presents the development and implementation of a recurrently funded, rolling, 6-month palliative care secondment programme for NHS community staff nurses based in a rural health economy in Southwest England. The programme is a key tool in a wider development plan for improving access to, and the quality of, palliative and end-of-life care for a dispersed rural population. This is part of a much bigger programme of integration to meet the shared challenges of service capacity, equity, and sustainability that are presented by the geographical and demographical profile of the locality. The 'bigger picture' is defined and set in the context of the national drive and evidence base for integration in order to explain the reasons behind the secondment programme. This is followed by outlining the iterative process of design and implementation--the 'what?' and 'how?'--and key learning points to date are shared.
Wittenberg-Lyles, Elaine M; Goldsmith, Joy; Ragan, Sandra L; Sanchez-Reilly, Sandra
This study focused on the undergraduate medical student to identify views and ideas held toward palliative care communication training, pedagogical approaches to this training, and its perceived effectiveness and use in the medical field. Two focus groups consisting of fourth-year medical students were conducted, and their responses were analyzed using grounded theory categorization. Results indicated that students: (a) prefer to learn nonverbal communication techniques, (b) believe that natural ability and experience outweigh communication curriculum, (c) view the skill of breaking bad news as largely dependent on knowledge and expertise, and (d) prefer curriculum on palliative care and hospice to consist of information (eg, advance directives) rather than communication skills. Implications for these interpretive themes are discussed as well as future research and practice.
Community palliative care nurses in Perth have joined the throng of healthcare workers relying on personal digital assistants (PDAs) to store, access and send client information in 'real time'. This paper is guided by Heidegger's approach to technologies and Habermas' insights into the role of law in administering social welfare programs to reveal how new ethical and legal understandings regarding patient information add to nursing's professional responsibilities. This qualitative research interprets data from interviews with twenty community palliative care nurses about clients' legal rights to informational privacy and confidentiality. It explores nurses' views of their nursing responsibilities regarding clients' legal rights, liability issues, bureaucratic monitoring and enforcement procedures. It concludes that nurses and clients are construed as legal subjects entrenched in legal relations that have magnified since these nurses began using PDAs in 2005/2006. © 2011 Blackwell Publishing Ltd.
Stilos, Kalli; Daines, Pat
Demand for palliative care services in Canada will increase owing to an aging population and the evolving role of palliative care in non-malignant illness. Increasing healthcare demands continue to shape the clinical nurse specialist (CNS) role, especially in the area of palliative care. Clinical nurse specialists bring specialized knowledge, skills and leadership to the clinical setting to enhance patient and family care. This paper highlights the clinical leadership role of the CNS as triage leader for a hospital-based palliative care consulting team. Changes to the team's referral and triage processes are emphasized as key improvements to team efficiency and timely access to care for patients and families.
Eryl Zac Maunder
Full Text Available This article explores the emotional labor involved for nurses providing palliative care for children/young people living with life-limiting illnesses/conditions, and their families. It highlights the challenges nurses face in managing their emotion when caring for children/young people and their families, and explores strategies to enable nurses to cope with this aspect of their role without compromising their personal wellbeing. It suggests that emotional labor within nursing goes largely unrecorded, and remains undervalued by managers and health care services.
This paper proposes a theoretical framework for understanding how music therapy elicits and supports depth experiences in palliative care. The author explores music therapy as a containing or sacred space in which ventures into the realm of psychospiritual awareness may safely occur. The ultimate goal is to facilitate the process of connecting to that which is psychologically and spiritually significant for the patient, thereby transforming experiences of suffering into those of meaning.
Fuly, Patrícia Dos Santos Claro; Pires, Livia Márcia Vidal; Souza, Claudia Quinto Santos de; Oliveira, Beatriz Guitton Renaud Baptista de; Padilha, Katia Grillo
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. 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. Analysis of 197 measures of the Nursing Activities Score (NAS) revealed a mean score of 43.09% and an association between the performance status of patients undergoing palliative care and the mean NAS scores. The results of the study point to the need to resize the team of the unit. The NAS has proven to be a useful tool in oncologic clinical units for patients undergoing palliative care. Verificar a carga de trabalho de enfermagem requerida por pacientes com câncer sob cuidados paliativos e possíveis associações entre as características demográficas e clínicas dos pacientes e a carga de trabalho de enfermagem. Trata-se de um estudo de abordagem quantitativa, transversal, prospectivo, desenvolvido na clínica de Tecido Ósseo Conectivo (TOC) da Unidade II do Instituto Nacional de Câncer José Alencar Gomes da Silva, com pacientes em cuidados paliativos. A análise de 197 medidas do Nursing Activities Score (NAS) revelou um escore médio de 43,09% e uma associação entre a performance status de pacientes em cuidados paliativos com os valores médios do NAS. Os resultados do estudo apontam para a necessidade de redimensionamento da equipe da Unidade. O NAS mostrou-se um instrumento passível de utilização em unidades clínicas oncológicas, com pacientes em cuidados paliativos.
Lagman, Ruth; Walsh, Declan
Because of the advent of disease-modifying agents for patients with malignancies, cancer is now a chronic illness. However, most cancer patients will experience significant symptoms and complications during the course of their illness or its treatment. In addition to their physical symptoms, patient and families are burdened with psychological, social, and spiritual difficulties. Palliative medicine addresses all these issues and complements attempts to cure the disease; it is an essential part of modern comprehensive cancer care.
Gilmer, Mary Jo; Baudino, Marissa N; Tielsch Goddard, Anna; Vickers, Donna C; Akard, Terrah Foster
Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population.
Naveen S Salins
Full Text Available Intrathecal analgesia is an interventional form of pain relief with definite advantages and multiple complications. Administration of intrathecal analgesia needs a good resource setting and expertise. Early complications of intrathecal analgesia can be very distressing and managing these complications will need a high degree of knowledge, technical expertise and level of experience. Pain control alone cannot be the marker of quality in palliative care. A holistic approach may need to be employed that is more person and family oriented.
Mathisen, Bernice; Yates, Patsy; Crofts, Penny
This paper reports on the experience of undergraduate speech-language pathology students at one university chosen for the implementation stage of the Palliative Care Curriculum for Undergraduates (PCC4U) Project. Funded by a government department for health and ageing through a national palliative care programme, the project was managed by a team of researchers from the discipline of nursing. The PCC4U project championed the inclusion of palliative care education as an integral part of medical, nursing, and allied healthcare undergraduate training. Of the pilot sites chosen for the PCC4U project, only one site, reported here, included both speech-language pathology and social work disciplines, providing an important opportunity for interdisciplinary collaboration on novel curriculum development in an area of mutual interest. This synergy served as an excellent foundation for ongoing opportunities for interdisciplinary teaching and learning in the university. Speech-language pathology students reported that the project was an invaluable addition to their education and preparation for clinical practice.
O'Kelly, Julian; Koffman, Jonathan
Music therapy aims to provide holistic support to individuals through the sensitive use of music by trained clinicians. A recent growth in music therapy posts in UK palliative care units has occurred despite a paucity of rigorous research. To explore the role of music therapy within multidisciplinary palliative care teams, and guide the future development of the discipline. In-depth qualitative interviews with 20 multidisciplinary colleagues of music therapists, based in five UK hospices. Analysis of interview material revealed a number of themes relevant to the study aims. Music therapy was valued by most interviewees; however there exists some lack of understanding of the role of the music therapist, particularly amongst nurses. Emotional, physical, social, environmental, creative and spiritual benefits of music therapy were described, with some benefits perceived as synergistic, arising from collaborations with other disciplines. Interviewees found experiencing or witnessing music therapy is effective in developing an understanding of the discipline. Music therapy is an appropriate therapeutic intervention for meeting the holistic needs of palliative care service users. More understanding and integration of music therapy could be encouraged with collaborative work, educational workshops, and the utilization of environmentally focused techniques. The study merits further research to explore and develop these findings.
Davis, Mellar P; Walsh, Declan; LeGrand, Susan B; Lagman, Ruth L; Harrison, Betty; Rybicki, Lisa
Financial comparisons of acute care hospital services are possible using the Centers for Medicare & Medicaid Services case mix index (CMI) and All Patient Refined-Diagnosis Related Group (APR-DRG) data. We compared The Cleveland Clinic's Inpatient Palliative Medicine (CCIPM) acute care unit's CMI and APR-DRG data with national and peer institution data. Total mean charges per admission to the CCIPM unit were 7,800 dollars lower than at other peer institutions despite an equivalent severity of illness and longer length of stay and higher mortality in the CCIPM unit. The lower charges were due primarily to lower laboratory and pharmaceutical charges. We conclude that an acute inpatient palliative medicine unit operating within a comprehensive integrated palliative medicine program is cost-effective in providing specialized care for people with advanced disease.
Centeno, Carlos; Rodríguez-Núñez, Alfredo
The aim of this 2-year systematic review is to understand how learner assessment and curriculum evaluation of education in palliative care is being undertaken and to examine whether current undergraduate education influences the clinical patient's care. Almost half of the 30 studies reviewed used a qualitative approach to evaluate learning experiences. Only three of them were controlled studies and a further one was a cohort study.When students openly express themselves, they agree that there is 'something' deep as regards the core or the essence of medical practice or nursing. They feel that they become better professionals and better prepared for the patients, not only in terms of end of life care, but also as regards care, irrespective of the phase of the disease.The inclusion of palliative care in undergraduate education is a way of providing knowledge, skill, and competences about palliative care (especially communication) and also improving attitudes toward caring in advanced disease and at the end of life. Different methods of experiential learning, even brief experiences, which bring students into close contact with palliative care clinical cases or patients, are providing better results. From research studies, there is only indirect evidence that palliative care training at university leads to better clinical care of patients. In the future, long-term cohort or controlled studies might answer that question.
Conclusions: In adult oncology, there is evidence to suggest early specialist palliative care improves HRQOL, mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-life care. There is moderate evidence to support the role of early specialist palliative care intervention in improvement of symptoms, survival, and health-related communication. There is limited evidence at present to support role of early specialist palliative care interventions in pediatric and geriatric oncology. Qualitative studies on barriers and negative patient outcomes may provide useful insights toward restructuring early specialist palliative care interventions.
This article discusses palliative care for the patients and their families and the role of nurses for a smooth change from inpatient services to home care. Home is where a patient feels most comfortable. To provide the best possible care it is important to respect the decision of the patient and his family maximally and QOL takes top priority. Through the participation of home care doctors, home health nurses, pharmacists, etc., a 24-hour system can be established to improve home care. Simultaneously, the up of a patient self-care agency regards it as an importance. However, it is very difficulty for the patients and their families demonstrate the identity in the complicated medical situation, and thus providing support to them is a function of the nurses. It has been required that nurses in hospitals and home health nurses function to raise patients' self-care.
Ledford, Christy J W; Canzona, Mollie Rose; Cafferty, Lauren A; Kalish, Virginia B
In the majority of U.S. hospitals, inpatient medicine teams make palliative care decisions in the absence of a formalized palliative system. Using a grounded theory approach, interviews with inpatient team members were systematically analyzed to uncover how participants conceptualize palliative care and how they regard the communicative structures that underlie its delivery. During analysis, Weick's model of organizing emerged as a framework that fit the data. The 39 participant inpatient team members discussed palliative care as primarily a communicative process. Themes describing the meaning of palliative care emerged around the concepts of receiver of care, timeline of care, and location of care. The emerging model included four stages in the communicative processes of inpatient palliative care: (a) interpret the need, (b) initiate the conversation, (c) integrate the processes, and (d) identify what works. In contrast to stable, focused palliative care teams or hospice care teams, which have prescribed patient populations and processes, the inpatient medicine team faces the equivocality of providing palliative care within a broader practice. This research offers a four-phase model to show how these inpatient teams communicate within this context. Implications for the provision of palliative care are discussed.
There is a broad range of palliative care available in the Netherlands. There are many options for obtaining palliative care at home. The care that terminally ill patients need can also be provided in nursing homes, care homes, hospitals and hospices. Government policy in this field is one of the re
Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo; Hui, David
China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient-based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were
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.
Salins, Naveen; Ramanjulu, Raghavendra; Patra, Lipika; Deodhar, Jayita; Muckaden, Mary Ann
Introduction: World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes. Methods: The question for the literature search was – Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper. Results: Ten patient-related outcomes of early specialist palliative care in adult cancer care was studied. Studies by Temel et al. (2012), Bakitas et al. (2009), Zimmermann et al. (2014), Rugno et al. (2014), Lowery et al. (2013) and Walker et al. (2014) showed early specialist palliative care improves health-related quality of life (HRQOL). Studies by Pirl et al. (2012), Lowery et al. (2013), and Walker et al. (2014) showed early specialist palliative care improved mood depression and anxiety. Studies by Zimmermann et al. and Rugno et al. (2014) showed symptom control benefit of early specialist palliative care. Studies by Temel (2010), Bakitas (2015) and Rugno et al. (2014) showed survival improvement with early specialist palliative care. All these studies were carried in ambulatory palliative care setting. No survival benefit of palliative care intervention was seen in inpatient palliative care setting. The studies by Geer et al. (2012), Rugno et al. (2014), and Lowery et al. (2013) showed that early palliative care intervention positively influences treatment decision making. All the studies showed that palliative care intervention group received less intravenous chemotherapy in last few weeks of life. Studies by Yoong et al. and Temel et al. (2011) shows early specialist palliative care improves advanced care planning. Studies by Temel et al. (2010), Greer et al. (2012), McNamara et al. (2013), Hui et al. (2014
Full Text Available Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147 working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation,religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia.
Broeckaert, B; Gielen, J; Van Iersel, T; Van den Branden, S
To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation, religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. WE WERE ABLE TO DISTINGUISH FOUR CLUSTERS: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia.
Barrett, Nina; Wholihan, Dorothy
Nurses should be familiar with and equipped to address the challenges that arise when caring for lesbian, gay, bisexual, transgender, or queer-identified (LGBTQ) patients. LGBTQ individuals have increased rates of certain physical diseases and are at greater risk of suffering from stress-sensitive mental health issues. Negative social attitudes, widespread discrimination and stigma, physical and psychological victimization, and less social support with aging contribute to the complexity of care for these individuals. Open communication, welcoming and accepting attitudes and environments, and sensitivity to unique multidimensional issues improve care to LGBTQ patients with serious advanced illness. Nursing can reach this vulnerable minority and positively impact the quality of care. Copyright © 2016 Elsevier Inc. All rights reserved.
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Duenk, RG; Verhagen, C; Dekhuijzen, PNR; Vissers, KCP; Engels, Y; Heijdra, Y
Introduction Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). Conclusion To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve
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.
Larson, Anne M
Liver disease results in over four million physician visits and over 750,000 hospitalizations per year in the USA. Those with chronic liver disease frequently progress to cirrhosis, end-stage liver disease (ESLD), and death. Patients with ESLD experience numerous complications, including muscle cramps, confusion (hepatic encephalopathy), protein calorie malnutrition, muscle wasting, fluid overload (ascites, edema), bleeding (esophagogastric variceal hemorrhage), infection (spontaneous bacterial peritonitis), fatigue, anxiety, and depression. Despite significant improvements in palliation of these complications, patients still suffer reduced quality of life and must confront the fact that their disease will often inexorably progress to death. Liver transplantation is a valid option in this setting, increasing the duration of survival and palliating many of the symptoms. However, many patients die waiting for an organ or are not candidates for transplantation due to comorbid illness. Others receive a transplant but succumb to complications of the transplant itself. Patients and families must struggle with simultaneously hoping for a cure while facing a life-threatening illness. Ideally, the combination of palliative care with life-sustaining therapy can maximize the patients' quality and quantity of life. If it becomes clear that life-sustaining therapy is no longer an option, these patients are then already in a system to help them with end-of-life care.
Margarida Maria Florêncio Dantas
Full Text Available This paper presents a reflection about being terminally ill and the various ways that the subject has at its disposal to deal with this event. The objective is to understand the experience of palliation for patients undergoing no therapeutic possibilities of cure. The methodology of this study has the instruments to semi-structured interview, the participant observation and the field diary, and the Descriptive Analysis of Foucault’s inspiration how the narratives of the subjects were perceived. The Results of paper there was the possibility of looking at the experience of illness through the eyes of a subject position assumed by the very sick. As conclusion we have than when choosing palliative care, the terminally ill opts for a way to feel more comfortable and resists the impositions of the medical model of prolonging life.
Hannon, Breffni; Swami, Nadia; Rodin, Gary; Pope, Ashley; Zimmermann, Camilla
Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Qualitative grounded theory study using individual interviews. The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.
This article draws on Illich's definition of health and explores the perspective of facing death as a process of adaptation. Research into psychoneuroimmunology is discussed. This focuses on using one's own resources, which the author sees as a central tenet of holism. A key aspect of this approach is not only empowerment of patients, but also of nurses, allowing them to be self-aware, self-valuing and to practise self-care. The article mentions an educational strategy to encourage a health-promoting approach. This course uses the concept of holism as a framework for teaching and practice of palliative care.
Kari Slåtten; Ove Hatlevik; Lisbeth Fagerström
Competence can be seen as a prerequisite for high quality nursing in clinical settings. Few research studies have focused on nurses’ core competencies in clinical palliative care and few measurement tools have been developed to explore these core competencies. The purpose of this study was to test and validate the nurses’ core competence in palliative care (NCPC) instrument. A total of 122 clinical nurse specialists who had completed a postbachelor program in palliative care at two university...
This paper describes research undertaken as part of an MA study in leadership. It draws on interviews with six high profile leaders at the fore front of end of life care sector in the UK. Its findings and emerging themes offer insights about the opportunities for social work leaders in palliative care in the future and how the profession and palliative care sector address current barriers to taking advantage of such opportunity. The main focus of this paper is leadership related to palliative...
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 characteristics were related to these changes. The analysis is based on 102 cancer patients. Data were collected through systematic registration during the palliative care process. At enrollment, patien...
Radbruch, Lukas; Leget, Carlo; Bahr, Patrick; Müller-Busch, Christof; Ellershaw, John; de Conno, Franco; Vanden Berghe, Paul
In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash. © The Author(s) 2015.
Integrating Palliative Care into the Care of Neurocritically Ill Patients: A Report from The IPAL-ICU (Improving Palliative Care in the Intensive Care Unit) Project Advisory Board and the Center to Advance Palliative Care
Frontera, Jennifer A.; Curtis, J. Randall; Nelson, Judith E.; Campbell, Margaret; Gabriel, Michelle; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Lustbader, Dana R.; Brasel, Karen J.; Weiss, Stefanie P.; Weissman, David E.
Objectives To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; To discuss key prognostic aids and their limitations for neurocritical illnesses; To review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; To describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. Data Sources A search of Pubmed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term “palliative care,” “supportive care,” “end-of-life care,” “withdrawal of life-sustaining therapy,” “limitation of life support,” “prognosis,” or “goals of care” together with “neurocritical care,” “neurointensive care,” “neurological,” “stroke,” “subarachnoid hemorrhage,” “intracerebral hemorrhage,” or “brain injury.” Data Extraction and Synthesis We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert Advisory Board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. Conclusions Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support, will
Bethel Ann Powers
Full Text Available Objective. To illustrate distinctions and intersections of palliative care (PC and end-of-life (EOL services through examples from case-centered data of older adults cared for during a four-year ethnographic study of an acute care hospital palliative care consultation service. Methods. Qualitative narrative and thematic analysis. Results. Description of four practice paradigms (EOL transitions, prognostic uncertainty, discharge planning, and patient/family values and preferences and identification of the underlying structure and communication patterns of PC consultation services common to them. Conclusions. Consistent with reports by other researchers, study data support the need to move beyond equating PC with hospice or EOL care and the notion that EOL is a well-demarcated period of time before death. If professional health care providers assume that PC services are limited to assisting with and helping patients and families prepare for dying, they miss opportunities to provide care considered important to older individuals confronting life-limiting illnesses.
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.
Full Text Available The analysis of the institutionalization of palliative care trends in contemporary Russian is given by the authors in the methodological plane of the system of social and structural functions (AGIL, proposed by Talcott Parsons. The medicalization of palliative care in Russia is considered by the authors from the perspective of the dysfunctional practices. It is noted that the legislative documents adopted in Russia define palliative care as palliative medical care. The organization of palliative care in Russia takes place simultaneously with the improvement of legal acts, which significantly slows down the process of becoming of palliative care to population and predetermines the limit of its availability. The principle of an integrative approach to the organization of palliative care was not reflected in the process of formation of the normative base. The interdisciplinary view on the organization of palliative care and increase of its availability will allow to verify and to overcome the dysfunctions in the organization of palliative care to the population.
Specialist palliative care day care (SPDC) units provide an array of services to patients and their families and can increase continuity of care between inpatient and homecare settings. A multidisciplinary teamwork approach is emphasized, and different models of day care exist. Depending on the emphasis of care, the models can be social, medical, therapeutic, or mixed. We describe our experience of introducing an enhanced therapeutic specialist day care model and using both patient- and carer-rated tools to monitor patient outcomes.
Beaune, Laura; Leavens, Anne; Muskat, Barbara; Ford-Jones, Lee; Rapoport, Adam; Zlotnik Shaul, Randi; Morinis, Julia; Chapman, Lee Ann
It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the content validity and utility for health care providers of a poverty screening tool and companion resource guide for the pediatric palliative care population. The study found high relevance and validity of the tool. Significant barriers to implementing the screening tool in clinical practice were described by participants, including: concerns regarding time required, roles and responsibilities, and discomfort in asking about income. Implications for practice and suggestions for improving the tool are discussed. Screening and attention to the social determinants of health lie within the scope of practice of all health care providers. Social workers can play a leadership role in this work.
Full Text Available It has been my experience that parents are willing and open to express their voices to promote and advocate for music therapy services for their terminally ill children. By listening to parents' voices when providing care for terminally ill children, much can be done to ease the suffering of children and families at the end of life (Widger & Wilkins, 2004. My music therapy masters research at the University of Melbourne with Dr. Katrina McFerran will investigate bereaved parents' experiences of music therapy with their terminally ill child. This inquiry unfolded through my music therapy work with several children and families within hospice and palliative care. Parents have reflected that music therapy was a vital component in their child's care at the end of life. As one mom commented, "I don't care what anyone says, it has made a world of a difference." In order to further explore parents' experiences of music therapy, in-depth interviews will be conducted and transcripts will be analyzed using phenomenological strategies. It has been reported that parents find the interview process helpful in working through grief. They have also reported feeling an overall eagerness to share their child's story in order to provide input that might assist other families in the future (Widger & Wilkins, 2004. This article will describe pediatric palliative and hospice care, discuss parents as advocates for their terminally ill children, portray the use of music therapy within pediatrics, and share an example of music therapy with Jack.
Puchalski, Christina M; Dorff, Rabbi Elliot; Hendi, Imam Yahya
In end-of-life care, attending to spiritual needs ensures that a dying patient has the opportunity to find meaning in the midst of suffering and to have the opportunity for love, compassion, and partnership in their final journey. This article summarizes some of the beliefs and traditions from Judaism, Islam, and Christianity that affect people as they face their own dying and mortality. People who do not participate in any formal religion also have a drive to find meaning in the midst of suffering and dying. They may find this in personal ways. This article presents some practical tools to help clinicians address and respect spiritual and religious issues of patients. It is crucial that our culture and our systems of care for the dying include a spiritual approach so that dying can be meaningful and even filled with hope.
Barilan, Y Michael
In refutation of hedonism, Nozick offered a hypothetical thought experiment, known as the Experience Machine. This paper maintains that end-of-life-suffering of the kind that is resistant to state-of-the-art palliation provides a conceptually equal experiment which validates Nozick's observations and conclusions. The observation that very many terminal patients who suffer terribly do no wish for euthanasia or terminal sedation is incompatible with motivational hedonism. Although irreversible vegetative state and death are equivalently pain-free, very many people loath the former even at the price of the latter. This attitude cannot be accounted for by hedonism. Following these observations, the goals of palliative care are sketched along four circles. The first is mere removal or mitigation of noxious symptoms and suffering. The second targets sufferings that stymie patients' life-plans and do not allow them to be happy, the third targets sufferings that interfere with their pursuance of other goods (palliation as a primary good). The fourth is the control of sufferings that do not allow the person to benefit from any human good whatsoever ("total pain" or critical suffering). Only in the fourth circle are people hedonists.
Ridley, Julia; Dance, Derry; Pare, Daniel
Humor frequently occurs in palliative care environments; however, the acceptability of humor, particularly between patients and health care providers has not been previously examined. To explore the importance and acceptability of humor to participants who are patients in a palliative care context, the study determines if demographics are correlated with the degree of acceptability, and examines the acceptance of humor by patients with advanced illness when interacting with nurses or physicians. One hundred participants admitted to a palliative care unit or residential hospice were surveyed. Basic demographic data were collected, as well as responses on a five-point Likert scale to a variety of questions regarding the participants' attitudes about humor before and after their illness and the acceptability of humor in a palliative setting. Participants were also given the opportunity to comment freely on the topic of humor and the palliative experience. A large majority of participants valued humor highly both prior to (77%) and during (76%) their illness experience. Despite this valuation, the frequency of laughter in their daily lives diminished significantly as patients' illness progressed. Most participants remembered laughing with a nurse (87%) and a doctor (67%) in the week prior to the survey, and found humor with their doctors (75%) and nurses appropriate (88%). The vast majority of participants found humorous interactions with their health care providers acceptable and appropriate, and this may indicate a opportunity for enhanced and more effective end-of-life care in the future.
McGee, Paula; Johnson, Mark R D
Increasing ethnic or cultural diversity in the population served by health-care services requires improved competence and updated provision. Both individual staff and institutions need to reflect on and prepare to meet new challenges. Three key elements-reflective self-awareness, knowledge of others, and skills in managing difference-must be developed. Recognition of diversity and a database of appropriate information are essential for both workers and management of organisations. Above all, some preparedness for continual change and learning is essential. This article provides some suggestions and examples to assist with this.
Graf Bernhard M
Full Text Available Abstract Background During the last stage of life, palliative care patients often experience episodes of respiratory distress, bleeding, pain or seizures. In such situations, caregivers may call emergency medical services leading to unwanted hospital admissions. The study aims to show the influence of our palliative care team to reducing emergency calls by cancer patients or their relatives during the last six month of life. Methods Fifty relatives of deceased patients who had been attended by our palliative care team were randomly selected. Data was obtained retrospectively during a structured interview. In addition to demographic data, the number of emergency calls made during the final six months of the patient's life, the reason for the call and the mental compound score (MCS-12 of the caregivers was registered. Results Forty-six relatives agreed to the interview. Emergency calls were placed for 18 patients (39% during the final six months of their lives. There were a total of 23 emergency calls. In 16 cases (70% the patient was admitted to the hospital. Twenty-one (91% of the calls were made before patients had been enrolled to receive palliative care from the team, and two (9% were made afterwards. The mean mental compound score of the caregivers at the time of the interview was 41 (range 28–57. There was a lack of correlation between MCS-12 and number of emergency calls. Conclusion Emergency calls were more likely to occur if the patients were not being attended by our palliative care team. Because of the lack of correlation between MCS-12 and the number of emergency calls, the MCS-12 cannot indicate that acutely stressful situations triggered the calls. However, we conclude that special palliative care programs can reduce psychosocial strain in family caregivers. Therefore, the number of emergency calls may be reduced and this fact allows more palliative patients to die at home.
Núñez Olarte, J M; Guillen, D G
The concept of palliative care differs according to cultures and traditions. In Spain, palliative care programs have expanded in recent years. The European Commission Research Project in Palliative Care Ethics has sponsored ongoing research to analyze and clarify the conceptual differences in providing palliative care to patients in European countries with diverse cultures and backgrounds. The authors present key ethical issues in clinical practice in palliative and end-of-life care in Spain and how these issues are influenced by Spanish culture. They discuss typical characteristics of the Spanish conceptual approach to palliative care, which might be relevant in an even larger Latin palliative care context. The cultural tradition in Spain influences attitudes toward euthanasia, sedation, the definition of terminality, care in the last 48 hours of life, diagnosis disclosure, and information. The overall care of terminally ill patients with an Hispanic background includes not only the treatment of disease, but also the recognition and respect of their traditions and culture. The Spanish palliative care movement has shifted its focus from starting new programs to consolidating and expanding the training of the professionals already working in the existing programs. Although there is a general consensus that a new philosophy of care is needed, the interpretation and application of this general philosophy are different in diverse sociocultural contexts.
Penrod, Joan D; Pronovost, Peter J; Livote, Elayne E; Puntillo, Kathleen A; Walker, Amy S; Wallenstein, Sylvan; Mercado, Alice F; Swoboda, Sandra M; Ilaoa, Debra; Thompson, David A; Nelson, Judith E
High-quality care for intensive care unit patients and families includes palliative care. To promote performance improvement, the Agency for Healthcare Research and Quality's National Quality Measures Clearinghouse identified nine evidence-based processes of intensive care unit palliative care (Care and Communication Bundle) that are measured through review of medical record documentation. We conducted this study to examine how frequently the Care and Communication Bundle processes were performed in diverse intensive care units and to understand patient factors that are associated with such performance. Prospective, multisite, observational study of performance of key intensive care unit palliative care processes. A surgical intensive care unit and a medical intensive care unit in two different large academic health centers and a medical-surgical intensive care unit in a medium-sized community hospital. Consecutive adult patients with length of intensive care unit stay ≥5 days. None. Between November 2007 and December 2009, we measured performance by specified day after intensive care unit admission on nine care process measures: Identify medical decision-maker, advance directive and resuscitation preference, distribute family information leaflet, assess and manage pain, offer social work and spiritual support, and conduct interdisciplinary family meeting. Multivariable regression analysis was used to determine predictors of performance of five care processes. We enrolled 518 (94.9%) patients and 336 (83.6%) family members. Performances on pain assessment and management measures were high. In contrast, interdisciplinary family meetings were documented for <20% of patients by intensive care unit day 5. Performance on other measures ranged from 8% to 43%, with substantial variation across and within sites. Chronic comorbidity burden and site were the most consistent predictors of care process performance. Across three intensive care units in this study, performance
Cruz-Oliver, Dulce M; Bernacki, Rachelle; Cooper, Zara; Grudzen, Corita; Izumi, Seiko; Lafond, Deborah; Lam, Daniel; LeBlanc, Thomas W; Tjia, Jennifer; Walter, Jennifer
There is a pressing workforce shortage and leadership scarcity in palliative care to adequately meet the demands of individuals with serious illness and their families. To address this gap, the Cambia Health Foundation launched its Sojourns Scholars Leadership Program in 2014, an initiative designed to identify, cultivate, and advance the next generation of palliative care leaders. This report intends to summarize the second cohort of Sojourns Scholars' projects and their reflection on their leadership needs. This report summarizes the second cohort of sojourns scholars' project and their reflection on leadership needs. After providing a written reflection on their own projects, the second cohort participated in a group interview (fireside chat) to elicit their perspectives on barriers and facilitators in providing palliative care, issues facing leadership in palliative care in the United States, and lessons from personal and professional growth as leaders in palliative care. They analyzed the transcript of the group interview using qualitative content analysis methodology. Three themes emerged from descriptions of the scholars' project experience: challenges in palliative care practice, leadership strategies in palliative care, and three lessons learned to be a leader were identified. Challenges included perceptions of palliative care, payment and policy, and workforce development. Educating and collaborating with other clinicians and influencing policy change are important strategies used to advance palliative care. Time management, leading team effort, and inspiring others are important skills that promote effectiveness as a leader. Emerging leaders have a unique view of conceptualizing contemporary palliative care and shaping the future. Providing comprehensive, coordinated care that is high quality, patient and family centered, and readily available depends on strong leadership in palliative care. The Cambia Scholars Program represents a unique opportunity.
Soebadi, R D; Tejawinata, S
Indonesia is a large archipelago with an estimated 203,000-365,400 new cancer cases a year. Most cases present in the advanced stage. Pain is the chief complaint in 89% of the patients of the palliative care unit at Dr. Soetomo hospital. The program is a community-based, family-oriented, and culturally adapted home care, widely applicable throughout the country. The service and medication should be affordable, simple, and available. The WHO three-step ladder has been adopted as the method of choice in cancer pain relief. Facilities supportive for the program are the existing health-care delivery system and non-formal support system (Indonesian Cancer Foundation and Organization for Family Welfare Promotion, PKK). The chief constraints for program implementation are the geographical and population problems, lack of resources and funding for the training of health-care workers, and limited availability of oral morphine.
Nelson, Judith E; Mathews, Kusum S; Weissman, David E; Brasel, Karen J; Campbell, Margaret; Curtis, J Randall; Frontera, Jennifer A; Gabriel, Michelle; Hays, Ross M; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Weiss, Stefanie P; Bassett, Rick; Boss, Renee D; Lustbader, Dana R
Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved.
Palliative care has evolved from end-of-life care following exhaustion of curative therapy to care across the cancer-management continuum. Often initiated concurrently with curative care at the time of diagnosis, palliative care ensures both effective symptom management and the best possible quality of life in four key domains-physical, psychological, social, and spiritual. The significant growth and development of palliative care in the United States is evident in that one in four hospitals now has a palliative care program, palliative medicine is now recognized as an official medical subspecialty by the American Board of Medical Specialties, and national programs offer comprehensive continuing education in palliative care for nurses and physicians. The oncology nurse who provides palliative care does so as part of a multidisciplinary team that includes not only physicians but also can involve chaplains, massage therapists, pharmacists, nutritionists, and other specialists. This article provides resources and reviews and highlights pertinent palliative care issues to guide oncology nurses managing newly diagnosed cancer patients.
Gardiner, Clare; Gott, Merryn; Ingleton, Christine
The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers. To explore factors that support partnership working between specialist and generalist palliative care providers. Systematic review. A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011. Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care. Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.
Jeffrey, Ewan James; Goddard, Jen; Jeffrey, David
This paper describes an innovative 2 weeks module for medical students facilitated by drama educators and a palliative medicine doctor. The module incorporates drama, end-of-life care, teamwork and reflective practice. The module contents, practical aspects of drama teaching and learning outcomes are discussed. Various themes emerged from a study of Harold Pinter's play, The Caretaker, which were relevant to clinical practice: silence, power, communication, uncertainty and unanswered questions. Drama teaching may be one way of enhancing students' confidence, increasing self- awareness, developing ethical thinking and fostering teamworking.
Kaasa, Stein; Loge, Jon Håvard; Fayers, Peter; Caraceni, Augusto; Strasser, Florian; Hjermstad, Marianne Jensen; Higginson, Irene; Radbruch, Lukas; Haugen, Dagny Faksvåg
This article describes the research strategy for the development of a computerized assessment tool as part of a European Union (EU)-funded project, the European Palliative Care Research Collaborative (EPCRC). The EPCRC is funded through the Sixth Framework Program of the EU with major objectives to develop a computer-based assessment and classification tool for pain, depression, and cachexia. A systematic approach will be applied for the tool development with emphasis on multicultural and multilanguage challenges across Europe. The EPCRC is based on a long lasting collaboration within the European Association for Palliative Care Research Network. The ongoing change in society towards greatly increased use of communication as well as information transfer via digital systems will rapidly change the health care system. Therefore, patient-centered outcome assessment tools applicable for both clinic and research should be developed. Report of symptoms via digital media provides a start for face-to-face communication, treatment decisions, and assessment of treatment effects. The increased use of electronic media for exchange of information may facilitate the development and use of electronic assessment tools and decision-making systems in oncology. In the future, patients may find that a combination of a face-to-face interview plus a transfer of information of subjective symptoms by electronic means will optimize treatment.
Mizuno, Atsushi; Miyashita, Mitsunori; Hayashi, Akitoshi; Kawai, Fujimi; Niwa, Koichiro; Utsunomiya, Akemi; Kohsaka, Shun; Kohno, Takashi; Yamamoto, Takeshi; Takayama, Morimasa; Anzai, Toshihisa
In spite of the increasing interest in palliative care for heart disease, data on the detailed methods of palliative care and its efficacy specifically in heart disease are still lacking. A structured PubMed literature review revealed no quality indicators of palliative care in heart disease. Therefore, we performed a narrative overview of the potential quality indicators in heart disease by reviewing previous literature concerning quality indicators in cancer patients. We summarize seven potential categories of quality indicators in heart disease: (1) presence and availability of a palliative care unit, palliative care team, and outpatient palliative care; (2) human resources such as number of skilled staff; (3) infrastructure; (4) presence and frequency of documentation or family survey; (5) patient-reported outcome measure (PROM) data and disease-specific patient quality of life such as The Kansas City Cardiomyopathy Questionnaire (KCCQ); (6) questionnaires and interviews about the quality of palliative care after death, including bereaved family surveys; and (7) admission-related outcomes such as place of death and intensive care unit length of stay. Although detailed measurements of palliative care quality have not been validated in heart disease, many indicators developed in cancer patients might also be applicable to heart disease. This new categorization might be useful to determine quality indicators in heart disease patients. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.
Phungrassami, Temsak; Thongkhamcharoen, Rojanasak; Atthakul, Narumol
Research on palliative care services in Thailand is incomplete. We conducted a countrywide cross-sectional postal survey to update the situation. We approached hospitals and asked them to respond to a questionnaire. The overall response rate of government hospitals was 61 percent (537 of 882 hospitals). Of these, 59 percent reported that they had personnel trained in palliative care; the majority had received less than a week of such training. In all, 60 percent of the hospitals reported that they offered palliative care services, but 25 percent of these services were delivered by staff who had no palliative care training. The criteria of having at least one trained doctor and nurse on staff was met by 17 percent of the hospitals. Only seven hospitals, most of them associated with medical schools, employed both a doctor and a nurse who had been trained in palliative care for one month or more; these professionals mainly provided hospital and home palliative care team services. Our survey reveals the lack of both health care personnel fully trained in palliative care and specialist palliative care services in Thailand.
van Niekerk, L; Raubenheimer, P J
To assess the need for palliative care among inpatients occupying acute beds in the public sector hospitals of the Cape Town Metropole. A cross-sectional, contemporaneous, point-prevalence study was performed at 11 public sector hospitals in the Cape Town Metropole using a standardised palliative care identification tool. Data were collected on the socio-demographic characteristics, diagnoses, and prior and current care planning of patients. The case notes of 1 443 hospital inpatients were surveyed, and 16.6% were found to have an active life-limiting disease. The mean age of the group was 56 years. The diagnoses were cancer in 50.8%, organ failure in 32.5%, and HIV/tuberculosis in 9.6%. The greatest burden of disease was in the general medical wards, to which an overall 54.8% of patients meeting the requirements for palliative care were admitted. This study provides evidence for the need for palliative care services in public sector hospitals and in the health system as a whole. The young age of patients and the high prevalences of end-stage renal failure and HIV are unique, and the burden in the general medical wards suggests a focus for initial inpatient programmes.
A.D. Masman (Anniek); M. van Dijk (Monique); D. Tibboel (Dick); F.P.M. Baar (Frans); R.A. Mathot (Ron)
textabstractBackground In end-of-life care, symptoms of discomfort are mainly managed by drug therapy, the guidelines for which are mainly based on expert opinions. A few papers have inventoried drug prescriptions in palliative care settings, but none has reported the frequency of use in combination
Vermandere, M.; Lepeleire, J. De; Mechelen, W. van; Warmenhoven, F.C.; Thoonsen, B.A.; Aertgeerts, B.
The purpose of this study was to identify key outcome measures of spiritual care in palliative home care. A qualitative study was conducted with experts from 3 stakeholder groups (physicians, professional spiritual caregivers, and researchers) representing 2 countries (Belgium and The Netherlands).
Plas, A.G. van der; Deliens, L.; Watering, M. van de; Jansen, W.J.; Vissers, K.C.P.; Onwuteaka-Philipsen, B.D.
BACKGROUND: In case management an individual or small team is responsible for navigating the patient through complex care. Characteristics of case management within and throughout different target groups and settings vary widely. Case management is relatively new in palliative care. Insight into the
Full Text Available Palliative cancer treatment is a system of care that seeks to relieve suffering in patients with progressive cancer. Given the intractable symptoms with which certain malignancies manifest, palliative care offers a practical approach towards improving the patient′s quality of life. However, there are an array of ethical issues associated with this treatment strategy such as particular methods of pain relief, a reliable assessment of suffering, autonomy, and multi-specialist care. While these principles are important to increase and improve the network of palliative care, the resource-poor Indian environments present numerous barriers for these principles to be practically applied. As the infrastructure of comprehensive cancer centers develop, paralleled with an increase in training of palliative care professionals, significant improvements need to be made in order to elevate the status of palliative cancer care in India.
Allsop, Matthew J; Kite, Suzanne; McDermott, Sarah; Penn, Naomi; Millares-Martin, Pablo; Bennett, Michael I
The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths ( n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines
Sellick, S M; Charles, K; Dagsvik, J; Kelley, M L
To obtain the information necessary for coordinated regional program development, we examined (a) the multidisciplinary viewpoint of palliative care service provision and (b) the continuing education needs reported by non-physician service providers. Of 146 surveys distributed to care providers from multiple settings, 135 were returned. Respondents cited these problems: fragmented services, poor pain and symptom control, lack of education for providers, lack of public awareness, problems with the continuity and coordination of care, lack of respite, and lack of hospice beds. Stress management for caregivers, pain management, communication skills, and symptom assessment were rated as priorities in continuing education. Lectures, small group discussions, practicum, and regular medical centre rounds were the preferred learning formats, while costs and staff shortages were cited as educational barriers.
Bassah, Nahyeni; Seymour, Jane; Cox, Karen
... of palliative care curricula in resource-poor countries. A modified systematic review of research on palliative care educational interventions, conducted with pre-registration student nurses was undertaken...
Leemans, Kathleen; Cohen, Joachim; Francke, Anneke L; Vander Stichele, Robert; Claessen, Susanne Jj; Van den Block, Lieve; Deliens, Luc
.... In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries...
Farquhar, Morag C; Ewing, Gail; Booth, Sara
there is increasing interest in combining qualitative and quantitative research methods to provide comprehensiveness and greater knowledge yield. Mixed methods are valuable in the development and evaluation of complex interventions. They are therefore particularly valuable in palliative care research where the majority of interventions are complex, and the identification of outcomes particularly challenging. this paper aims to introduce the role of mixed methods in the development and evaluation of complex interventions in palliative care, and how they may be used in palliative care research. the paper defines mixed methods and outlines why and how mixed methods are used to develop and evaluate complex interventions, with a pragmatic focus on design and data collection issues and data analysis. Useful texts are signposted and illustrative examples provided of mixed method studies in palliative care, including a detailed worked example of the development and evaluation of a complex intervention in palliative care for breathlessness. Key challenges to conducting mixed methods in palliative care research are identified in relation to data collection, data integration in analysis, costs and dissemination and how these might be addressed. the development and evaluation of complex interventions in palliative care benefit from the application of mixed methods. Mixed methods enable better understanding of whether and how an intervention works (or does not work) and inform the design of subsequent studies. However, they can be challenging: mixed method studies in palliative care will benefit from working with agreed protocols, multidisciplinary teams and engaging staff with appropriate skill sets.
Tardy, B; Picard, S; Guirimand, F; Chapelle, C; Danel Delerue, M; Celarier, T; Ciais, J-F; Vassal, P; Salas, S; Filbet, M; Gomas, J-M; Guillot, A; Gaultier, J-B; Merah, A; Richard, A; Laporte, S; Bertoletti, L
Essentials Bleeding incidence as hemorrhagic risk factors are unknown in palliative care inpatients. We conducted a multicenter observational study (22 Palliative Care Units, 1199 patients). At three months, the cumulative incidence of clinically relevant bleeding was 9.8%. Cancer, recent bleeding, thromboprophylaxis and antiplatelet therapy were independent risk factors.
Claessen, S.J.; Francke, A.L.; Deliens, L.
Aim: The aim of this study was to explore how GPs in the Netherlands recognize patients’ needs for palliative care. Methods: We conducted qualitative semi-structured interviews with about 25 GPs. These GPs were interviewed about recognition of the needs for palliative care in their patients and how
Cagle, John G.; Bolte, Sage
Social workers in hospice and palliative care settings have been charged with the responsibility of addressing sexuality with their patients and families. However, little direction has been offered as to how to approach this difficult subject within the context of palliative care. This article provides a critical analysis of the previous…
Slort, W.; Schweitzer, B.P.M.; Blankenstein, A.H.; Abarshi, E.A.; Riphagen, I.I.; Echteld, M.A.; Aaronson, N.K.; van der Horst, H.E.; Deliens, L.
While effective general practitioner (GP)-patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP-patient communication in palliative care. In a systematic
Ise, Yuya; Morita, Tatsuya; Katayama, Shirou; Kizawa, Yoshiyuki
The role of pharmacists in palliative care has become more important now that they are able to provide medication review, patient education, and advice to physicians about a patient's pharmacotherapy. However, there is little known about pharmacists' activity on palliative care teams. The present study aimed to examine the clinical, educational, and research activities of pharmacists on palliative care teams and pharmacist-perceived contributions to a palliative care team or why they could not contribute. We sent 397 questionnaires to designated cancer hospitals, and 304 responses were analyzed (response rate 77%). Of the pharmacists surveyed, 79% and 94% reported attending ward rounds and conferences, respectively. Half of the pharmacists provided information/suggestions to the team about pharmacology, pharmaceutical production, managing adverse effects, drug interactions, and/or rotation of drugs. In addition, 80% of the pharmacists organized a multidisciplinary conference on palliative care education. Furthermore, 60% of the pharmacists reported on palliative care research to a scientific society. Seventy percent of the pharmacists reported some level of contribution to a palliative care team, whereas 16% reported that they did not contribute, with the main perceived reasons for no contribution listed as insufficient time (90%) and/or staff (68%). In Japan, pharmacists exercise a moderate level of clinical activity on palliative care teams. Many pharmacists believe that they contribute to such a team and generally place more emphasis on their educational and research roles compared with clinical work. Crown Copyright © 2014. Published by Elsevier Inc. All rights reserved.
According to the guidelines which were published by WHO in 2008, palliative care has been defined as "An approach that improves the quality of life of the patients and their families who face the problems which are associated with life-threatening illnesses, through the prevention and relief of suffering by means of an early identification, an impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual". The intervention which is provided as a part of the palliative care has to be provided by health professionals who strictly work as a part of multidisciplinary team and have been specifically trained to an optimal level of competency in the field. The impairment of the physical function and pain are two key problem areas in palliative care, which a physiotherapist deals with. Is a physiotherapist who is trained in India, trained to work as an efficient member of the team in this field? THIS ARTICLE DEALS WITH THE FOLLOWING: What is palliative care and what is its importance?A multidisciplinary approach to palliative careThe scenario of palliative care in IndiaThe role of physiotherapy in palliative care.The current scenario of physiotherapy education vis a vis palliative care.
Claessen, S.J.; Francke, A.L.; Deliens, L.
Aim: The aim of this study was to explore how GPs in the Netherlands recognize patients’ needs for palliative care. Methods: We conducted qualitative semi-structured interviews with about 25 GPs. These GPs were interviewed about recognition of the needs for palliative care in their patients and how
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 u
Gurp, J.L. van; Selm, M. van; Leeuwen, E. van; Hasselaar, J.G.
BACKGROUND: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural pal
van Gurp, J.; van Selm, M.; van Leeuwen, E.; Hasselaar, J.
Background: Audio-visual teleconsultation is expected to help home-based palliative patients, hospital-based palliative care professionals, and family physicians to jointly design better, pro-active care. Consensual knowledge of the possibilities and limitations of teleconsultation in transmural pal
Meijler, WJ; Van Heest, F; Otter, R; Sleijfer, DT
Background. The objective of this study was to identify the general practitioner's perception of educational needs in palliative care. Method. A qualitative study with focus groups was performed. Results. General practitioners estimate palliative care as an important and valuable part of primary car
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 chara
Conclusions: The perception of palliative care medicine is low in first couple of year of medical study. It is increased in clinically exposed students but is surprisingly more in fourth year than final year undergraduate medical students. However, it should be included in undergraduate medical study. Keywords: medical students; palliative care; perception.
Warmenhoven, F.C.; Rijswijk, H.C.A.M. van; Hoogstraten, E. van; Spaendonck, K.P.M. van; Lucassen, P.L.B.J.; Prins, J.B.; Vissers, K.; Weel, C. van
PURPOSE Depression is highly prevalent in palliative care patients. In clinical practice, there is concern about both insufficient and excessive diagnosis and treatment of depression. In the Netherlands, family physicians have a central role in delivering palliative care. We explored variation in fa
Jelle van Gurp
Full Text Available 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 complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs. This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists.This work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations.The analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1 condensed encounters between home-based palliative care patients and distant professionals, (2 a unique insight into the patients' daily lives for palliative care specialists, and (3 long-term interaction that results in trustful relationships and experiences of intimacy and relief.Teleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient's context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily palliative care practice.
Nishikawa, Mitsunori; Yokoe, Yuriko; Kubokawa, Naomi; Hukuda, Koji; Hattori, Hideyuki; Hong, Young-Jae; Miura, Hisayuki; Shibasaki, Masataka; Endo, Hidetoshi; Takeda, Jun; Odate, Mitsuru; Senda, Kazuyoshi; Nakashima, Kazumitsu
Palliative care improves the quality of life of patients and their families facing problems associated with life-threatening illnesses by promoting the prevention and relief of suffering. Palliative care in Japan has been developed mainly for cancer patients. At the National Center for Geriatrics and Gerontology, an end-of-life care team (EOLCT) has been developed to promote palliative care for patients without cancer. In the first 6 months of its operation, 109 requests were received by the team, 40% of which were for patients without cancer or related disease, including dementia, frailty due to advanced age, chronic respiratory failure, chronic heart failure, and intractable neurologic diseases. The main purpose of the EOLCT is to alleviate suffering. The relevant activities of the team include the use of opioids, providing family care, and giving support in decision-making (advance care planning) regarding withholding; enforcement; and withdrawal of mechanical ventilators, gastric feeding tubes, and artificial alimentation. The EOLCT is also involved in ongoing discussions of ethical problems. The team is actively engaged in the activities of the Japanese Geriatric Society and contributes to the development of decision-making guidelines for end-of-life by the Ministry of Health, Labour and Welfare. The EOLCT can be helpful in promoting palliative care for patients with diseases other than cancer. The team offers support during times of difficulty and decision-making.
Mazutti, Sandra Regina Gonzaga; Nascimento, Andréia de Fátima; Fumis, Renata Rego Lins
Objective To estimate the incidence of limitations to Advanced Life Support in critically ill patients admitted to an intensive care unit with integrated palliative care. Methods This retrospective cohort study included patients in the palliative care program of the intensive care unit of Hospital Paulistano over 18 years of age from May 1, 2011, to January 31, 2014. The limitations to Advanced Life Support that were analyzed included do-not-resuscitate orders, mechanical ventilation, dialysis and vasoactive drugs. Central tendency measures were calculated for quantitative variables. The chi-squared test was used to compare the characteristics of patients with or without limits to Advanced Life Support, and the Wilcoxon test was used to compare length of stay after Advanced Life Support. Confidence intervals reflecting p ≤ 0.05 were considered for statistical significance. Results A total of 3,487 patients were admitted to the intensive care unit, of whom 342 were included in the palliative care program. It was observed that after entering the palliative care program, it took a median of 2 (1 - 4) days for death to occur in the intensive care unit and 4 (2 - 11) days for hospital death to occur. Many of the limitations to Advanced Life Support (42.7%) took place on the first day of hospitalization. Cardiopulmonary resuscitation (96.8%) and ventilatory support (73.6%) were the most adopted limitations. Conclusion The contribution of palliative care integrated into the intensive care unit was important for the practice of orthothanasia, i.e., the non-extension of the life of a critically ill patient by artificial means. PMID:27626949
Full Text Available RG Duenk,1 C Verhagen,1 PNR Dekhuijzen,2 KCP Vissers,1 Y Engels,1,* Y Heijdra2,* 1Department of Anesthesiology, Pain and Palliative Medicine, 2Department of Lung Diseases, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands *These authors contributed equally to this work Introduction: Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective: Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods: A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results: The 256 respondents (31.8% covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2% indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%, communication between pulmonologist and general practitioner (77%, and identification of the palliative phase (75.8%, while the latter was considered the most important aspect for improvement (67.6%. Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%, while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT. In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%. Conclusion: To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification
Feudtner, Chris; Nathanson, Pamela G
The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong communication skills of both sets of providers, as well as the potential for resource sharing and research collaboration. At the same time, the personal and professional relationships between PPC and PME present challenges, including potential conflict with colleagues, perceived or actual bias toward a palliative care perspective in resolving ethical problems, potential delay or underuse of PME services, and a potential undervaluing of the medical expertise required for PPC consultation. We recommend that these challenges be managed by: (1) clearly defining and communicating clinical roles of PPC and PME staff, (2) developing questions that may prompt PPC and PME teams to request consultation from the other service, (3) developing explicit recusal criteria for PPC providers who also provide PME consultation, (4) ensuring that PPC and PME services remain organizationally distinct, and (5) developing well-defined and broad scopes of practice. Overall, the rich relationship between PPC and PME offers substantial opportunities to better serve patients and families facing difficult decisions.
Brkić, Jovana; Tasić, Ljiljana; id_orcid 0000-0001-9584-0341; Krajnović, Dušanka
Pharmacists as the most accessible health care professionals in outpatient settings can improve palliative patient care. The aim of this review was to assess utility of pharmacists (the effectiveness of pharmacists' interventions) on clinical outcomes of patients in palliative care at all levels of health care and in home care. Two electronic databases were searched: PubMed and SCOPUS (last searched August 2014). Primary studies, of any type of research design, in English, related to clinical...
Foxwell, Anessa M; Moyer, Mary E; Casarett, David J; O'Connor, Nina R
Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.
Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas
The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.
Bergenholtz, H; Hølge-Hazelton, B; Jarlbæk, Lene
Background Hospitals have a responsibility to ensure that palliative care is provided to all patients with life-threatening illnesses. Generalist palliative care should therefore be acknowledged and organized as a part of the clinical tasks. However, little is known about the organization...... and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations. Methods Results from three different data sets, all aiming...... to evaluate generalist palliative care, were compared retrospectively. The data-sets derived from; 1. a national accreditation of the hospital, 2. a national survey and 3. an internal self-evaluation performed in the hospital. The data were triangulated to investigate the organization and evaluation...
Piedrafita-Susín, A B; Yoldi-Arzoz, E; Sánchez-Fernández, M; Zuazua-Ros, E; Vázquez-Calatayud, M
Adequate provision of palliative care by nursing in intensive care units is essential to facilitate a "good death" to critically ill patients. To determine the perceptions, experiences and knowledge of intensive care nurses in caring for terminal patients. A literature review was conducted on the bases of Pubmed, Cinahl and PsicINFO data using as search terms: cuidados paliativos, UCI, percepciones, experiencias, conocimientos y enfermería and their alternatives in English (palliative care, ICU, perceptions, experiences, knowledge and nursing), and combined with AND and OR Boolean. Also, 3 journals in intensive care were reviewed. Twenty seven articles for review were selected, most of them qualitative studies (n=16). After analysis of the literature it has been identified that even though nurses perceive the need to respect the dignity of the patient, to provide care aimed to comfort and to encourage the inclusion of the family in patient care, there is a lack of knowledge of the end of life care in intensive care units' nurses. This review reveals that to achieve quality care at the end of life, is necessary to encourage the training of nurses in palliative care and foster their emotional support, to conduct an effective multidisciplinary work and the inclusion of nurses in decision making. Copyright © 2014 Elsevier España, S.L.U. y SEEIUC. All rights reserved.
Nordgren, Lena; Olsson, Henny
Earlier research has shown that physicians and nurses are motivated to provide good palliative care, but several factors prevail that prevent the best care for dying patients. To provide good palliative care it is vital that the relationship between nurses and physicians is one based on trust, respect and sound communication. However, in settings such as a coronary care unit, disagreement sometimes occurs between different professional groups regarding care of dying patients. The aim of this study was to describe and understand physicians' and nurses' perceptions on their working relationship with one another and on palliative care in a coronary care unit setting. Using a convenience sample, professional caregivers were interviewed at their work in a coronary care unit in Sweden. Data collection and analysis were done concurrently using a qualitative approach. From the interviews, a specific pattern of concepts was identified. The concepts were associated with a dignified death, prerequisites for providing good palliative care and obstacles that prevented such care. Caregivers who work in a coronary care unit are highly motivated to provide the best possible care and to ensure a dignified death for their patients. Nevertheless, they sometimes fail in their intentions because of several obstacles that prevent good quality care from being fully realized. To improve practice, more attention should be paid to increasing dying patients' well-being and participation in care, improving strategic decision-making processes, offering support to patients and their relatives, and improving communication and interaction among caregivers working in a coronary care unit. Caregivers will be able to support patients and relatives better if there are good working relations in the work team and through better communication among the various professional caregivers.
García-Salido, A; Monleón-Luque, M; Barceló-Escario, M; Del Rincón-Fernández, C; Catá-Del Palacio, E; Martino-Alba, Ricardo
End-of-life care is of growing interest in Paediatrics. The number of children with diseases being treated using high-technology as palliative treatment has also increased. The creation of multidisciplinary care teams with 24/7 hours home care may prevent prolonged hospital stays in these patients. To adapt the treatment in order to avoid new hospital admissions and to obtain a better quality of life is a desirable objective. The taking of decisions and subsequent withdrawal of mechanical ventilation in the home is presented, along with the underlying disease and the acute event that led to the worsening of the patient. The decision-making and clinical management until the death of the patient is then discussed and reviewed. Copyright © 2013 Asociación Española de Pediatría. Published by Elsevier Espana. All rights reserved.
Rajagopal, M R
Medical practice today is disease-focused, ignoring the universally accepted definition of health as not just the absence of disease, but the promotion of complete physical, social and mental well-being. Generations of doctors in India have not studied modern pain management, and palliative care is practically unknown in most parts of the country, causing patients to be rejected by hospitals and doctors when they need help the most. The draconian Narcotic Drugs and Psychotropic Substances (NDPS) Act of 1985, outdated medical and nursing education, lack of public awareness and lack of clear governmental policy are responsible for this sorry state of affairs. The development of a community-oriented palliative care network eventually led to the formulation of a state palliative care policy in Kerala. The acceptance of palliative care as a medical specialty by the Medical Council of India and introduction of a postgraduate degree course in palliative medicine in 2010, the development of a National Programme for Palliative Care in 2012 by the Ministry of Health of the Government of India, and the amendment of the NDPS Act in 2014 have been major positive developments which have the potential to change the current state of affairs. However, these recent achievements represent but one step in the right direction. An improvement in palliative care education, a realistic palliative care policy and implementation of the NDPS Amendment Act are necessary for doing away with the gross, needless violation of the human right to life with dignity.
Singer, Yoram; Rotem, Bosmat; Alsana, Sa'id; Shvartzman, Pesach
... condition was the palliative care consultant called in. As it became clear to the family what the mobile palliative care unit (MPCU) had to offer, Abed was taken home. Because of the terrain conditions and directions, it took time until the palliative care team arrived at the family's hut. It is impolite to enter the family ground without being invited. Abed's son ...
Daya, A Praveena; Sarkar, Sonali; Kar, Sitanshu Sekhar
Context: The coverage of palliative care services is inadequate in India. Data on number of people needing palliative care and disease conditions needing palliative care needs to be estimated prior to planning of service in any area. Aims: To estimate the prevalence of need of palliative care in an urban area of Puducherry. Settings and Design: Exploratory cross-sectional study conducted in two areas, Senthamarainagar and Thiruvalluvarnagar having about 500 households each in Muthialpet area in urban Puducherry. Materials and Methods: All residents were interviewed using a structured questionnaire containing sociodemographic details, information regarding chronic illness and a screening tool to identify people in need of palliative care. Statistical Analysis: Variables such as sociodemographic characteristics were expressed in percentages. The main outcome variable, the number of people in need of palliative care was expressed in the prevalence percentages. Results: A total of 3554 individuals were surveyed in 1004 households. A period prevalence of need of palliative care in this community was 6.1/1000 population. The prevalence among those aged ≥15 years was 8/1000 population. The mean age of people requiring palliative care was 62 years. The most common disease condition in need of palliative care was old age-related weakness (41%). Most of them were women (17/22) and from lower socioeconomic class (6/22). Conclusions: Around 6/1000 population was identified to be in need of palliative care. The prevalence was highest among the elderly women, low socioeconomic class, widowed, those with less education, and those suffering from age-related weakness. PMID:28216868
We have been developing a VR system to provide patients with emotional support and to encourage them to assume an active life against cancer, since patients with an active lifestyle survive longer than those with a passive lifestyle. A possible explanation for this latter fact is that psychological stimulation may also activate the endocrine system and the immune system. Both systems may be able to rapidly repair tissue damaged by cancer and change the characteristics of the cancer itself. Although microelectrical analysis and molecular and genetic analyses are rapidly solving the riddles of the relationship between the brain and thought, we think that our VR research for palliative medicine may also play an important role in this area with regard to the development of new tools for treatment and support. This notion is based on the hypothesis that the brain can reorganize itself to compensate for irrationality or inappropriateness through pharmacological adaptation and/or anatomical regeneration of synapses. Another reason why VR research in palliative medicine is useful is that VR techniques represent not only an enhanced human-machine interface, but also an enhanced human communication technology. VR technology may also be used to help patients accept their disease. The mental state of a patient in the terminal stage of cancer changes step by step from denial of cancer, hope for a new treatment for cancer, suspicion of medical treatment, uneasiness regarding their future life, irritation, depression, and acceptance or despair. We plan to develop a new type of counseling system in medical cyberspace to provide mental care. It can also be used for group therapy or humor therapy to reduce loneliness. In summary, we conclude that VR technology can be applied to palliative medicine (1) to support communication between the patient and others, (2) to provide psychological support to treat neurosis and help to stabilize the patient's mental state, and (3) to actually
Pietersma, Patti; Follett-Bick, Sandra; Wilkinson, Brenda; Guebert, Nancy; Fisher, Kim; Pereira, Jose
Patients with advanced cancer experience various problems with eating, and their meals should be tailored to meet their specific needs. Two methods of food service were compared in a shared acute oncology/palliative care unit; an electrical food cart allowing patients to select their food types and portions at the bedside, and a traditional food tray delivery service that relied on meals being prepared in a centralized kitchen and then delivered by tray. Over a 10-day period, lunch meals were delivered by food cart and supper meals via food trays. Twenty-seven out of 32 patients participated in the trial. Patients significantly preferred the food cart to the trays with respect to the timing and appeal of the meal, appropriateness of food types and food portions and the variety of the food choices. A food cart as used in this trial provides a more flexible and appropriate method of food delivery to in-patients in the oncology and palliative unit. Further studies should examine whether this translates to improved caloric intake and quality of life parameters.
Leung, Margaret W; Goldfarb, Shari; Dizon, Don S
Treatment-related sexual complications are common in cancer patients although rarely discussed in the palliative care setting. Sexuality is an important survivorship issue and remains relevant even in the terminal setting. There are multiple barriers in dialoguing about intimacy and sexual functioning from the patient and provider perspectives. Palliative care providers, while not expected to be sexual health experts, can provide comprehensive patient-centered care by including sexual health as part of their evaluation. They can explore how sexual dysfunction can impair functioning and utilize an interdisciplinary approach to manage symptoms. Palliative care providers can help patients identify their goals of care and explore what anticipated sexual changes and treat-related side effects are tolerable and intolerable to the patient's quality of life. Principles on addressing sexuality in the palliative setting and practical ways of incorporating sexual history into the palliative care assessment are provided.
Cervantes, Lilia; Jones, Jacqueline; Linas, Stuart; Fischer, Stacy
Compared with non-Latino whites with advanced illness, Latinos are less likely to have an advance directive or to die with hospice services. To improve palliative care disparities, international ESRD guidelines call for increased research on culturally responsive communication of advance care planning (ACP). The objective of our study was to explore the preferences of Latino patients receiving dialysis regarding symptom management and ACP. Qualitative study design using semistructured face-to-face interviews of 20 Latinos on hemodialysis between February and July of 2015. Data were analyzed using thematic analysis. Four themes were identified: Avoiding harms of medication (fear of addiction and damage to bodies, effective distractions, reliance on traditional remedies, fatalism: the sense that one's illness is deserved punishment); barriers and facilitators to ACP: faith, family, and home (family group decision-making, family reluctance to have ACP conversations, flexible decision-making conversations at home with family, ACP conversations incorporating trust and linguistic congruency, family-first and faith-driven decisions); enhancing wellbeing day-to-day (supportive relationships, improved understanding of illness leads to adherence, recognizing new self-value, maintaining a positive outlook); and distressing aspects of living with their illness (dietary restriction is culturally isolating and challenging for families, logistic challenges and socioeconomic disadvantage compounded by health literacy and language barriers, required rapid adjustments to chronic illness, demanding dialysis schedule). Latinos described unique cultural preferences such as avoidance of medications for symptom alleviation and a preference to have family group decision-making and ACP conversations at home. Understanding and integrating cultural values and preferences into palliative care offers the potential to improve disparities and achieve quality patient-centered care for Latinos
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.
Conclusions: Concept of palliative care was poor among medical undergraduates. Health care providers can overcome by knowledge construction, interrelation between practice and evidence based medicine. [Int J Basic Clin Pharmacol 2016; 5(1.000: 188-191
Sampson, Cathy; Finlay, Ilora; Byrne, Anthony; Snow, Veronica; Nelson, Annmarie
Objectives The meaning that patients and carers attribute to their experience of palliative care is fundamental to the provision, practice and evaluation of optimal care. This analysis aims to establish contemporary key practices and priorities from the perspective of patients and carers. Methods Thematic analysis was applied to 594 anonymised free text responses from patients and carers documenting their experiences of palliative care. Results The emotional experience of care is the most sig...
Ishiguro, T; Takahashi, M; Kato, H; Abe, C; Shioya, A; Ishiguro, T; Yoshizawa, T; Yoshizawa, A
The Pharmacy Department at our hospital is attempting to develop methods for palliative care, for example of cancer pain or smelly tumors. The participation of pharmacists on the medical team for home care is necessary, because the supply of proper drugs for patients' individual conditions is indispensable in palliative care. Communication between not only patients, but also between their families and us, as well as the maintenance of close contact with the medical team, are important in home care.
In this article, I explore what happens when specialist palliative care staff meet together to discuss patients under their care. Many studies (e.g., Atkinson) have discussed how health care practitioners in various settings use rhetorical strategies when presenting cases in situations such as ward rounds and team meetings. Strategies for arguing and persuading are central to medical practice in the interprofessional context. The context of specialist palliative care is an interesting place...
Claessen, S.J.J.; Francke, A.F.; Deliens, L.
Aim: The CQ-index (Consumer Quality-index) is a standardized approach for measuring the quality of care from the perspective of care users. A CQ-index always combines 1. questions on actual care experiences and 2. questions on how important certain quality aspects are for respondents. The CQ-index P
Hudson, P; Thomas, T; Quinn, K; Aranda, S
Despite the promotion of family meetings as an essential tool for information sharing and planning in palliative care, minimal evidence exists to show their effectiveness. We sought to rectify this gap in evidence-based practice by evaluating recently developed clinical guidelines for facilitating family meetings. Palliative care nurses were trained to conduct family meetings using the guidelines. To assess the effectiveness of the guidelines, primary family carers who attended a family meeting completed a self-report instrument to measure unmet needs at three time periods: immediately before the meeting (T1), immediately after the meeting (T2) and two days after the meeting (T3). Phone interviews with carers were also conducted at T3. Patients, health professionals and family meeting facilitators were also invited to complete an evaluation form at T2. A focus group was conducted at the end of the project to gain reflections from the family meeting facilitators about their role, re-evaluate the family meeting clinical guidelines and discuss barriers and facilitators for ongoing implementation. Twenty family meetings were conducted at St Vincent's Hospital (Melbourne, Australia). A total of 42 participants were involved, including 20 family carers, 4 patients and 18 health professionals. Family carers reported a statistically significant increase in having their care needs met, from T1 to T2, which was maintained at T3; they also reported that the meetings were useful. Health professionals and patients advised that the meetings were well facilitated. The results from this pilot study indicate that family meetings, conducted using specific clinical practice guidelines, were useful and effective. However, more research is required to confirm these findings. Strategies for implementation and further research are outlined.
Full Text Available Abstract Background Delivering palliative care to elderly, dying patients is a present and future challenge. In Germany, this has been underlined by a 2009 legislation implementing palliative care as compulsory in the medical curriculum. While the number of elderly patients is increasing in many western countries multimorbidity, dementia and frailty complicate care. Teaching palliative care of the elderly to an interprofessional group of medical and nursing students can help to provide better care as acknowledged by the ministry of health and its expert panels. In this study we researched and created an interdisciplinary curriculum focussing on the palliative care needs of the elderly which will be presented in this paper. Methods In order to identify relevant learning goals and objectives for the curriculum, we proceeded in four subsequent stages. We searched international literature for existing undergraduate palliative care curricula focussing on the palliative care situation of elderly patients; we searched international literature for palliative care needs of the elderly. The searches were sensitive and limited in nature. Mesh terms were used where applicable. We then presented the results to a group of geriatrics and palliative care experts for critical appraisal. Finally, the findings were transformed into a curriculum, focussing on learning goals, using the literature found. Results The literature searches and expert feedback produced a primary body of results. The following deduction domains emerged: Geriatrics, Palliative Care, Communication & Patient Autonomy and Organisation & Social Networks. Based on these domains we developed our curriculum. Conclusions The curriculum was successfully implemented following the Kern approach for medical curricula. The process is documented in this paper. The information given may support curriculum developers in their search for learning goals and objectives.
Heckel, Maria; Stiel, Stephanie; Ostgathe, Christoph
Little is known on the role of the senses smell and taste in end-of-life care. The presented systematic literature analysis investigates the significance of smell and taste in palliative care. The online databases PubMed, CINAHL, MEDLINE, Deutsche Nationalbibliothek and British National Library were searched for English and German literature published between 1970 and April 2013 containing any kind of original data on the impact of smell and taste in patients in a palliative care situation. All retrieved publications were screened for relevance and full text was obtained for all articles identified as relevant. We integrated 13 papers for further analysis (explorative surveys 5, clinical trials 3, case studies 2, qualitative study 1, brief report 1, clinical report 1). Prevalence of smell and taste alterations in palliative care ranges between 60 and 86%. Existing literature reflects the significance of smells and tastes in palliative care setting in two main streams--smell and taste alterations as symptoms and malodorous wounds. Prevalence of smell and taste alterations in palliative care is high. However, in palliative care literature concepts for the assessment and fostering of subjective significance of smell and taste and the individual impact of significant smells and tastes are predominantly neglected. Available instruments should be characterized, validated and adapted for the use for palliative care patients.
Veloso, Verónica Inés; Tripodoro, Vilma Adriana
To revise the family caregiver's burden concept and to understand the implications for the patient, family and healthcare system. We analyzed recent literature in three main areas: the role of family caregiver at the end of life, the family caregiver's burden and the involvement of social care networks. The family caregiver often accepts the caring as a natural action, presumably imposed by the society. A recent review described seven main roles of care which, according to family system and society, consist of different tasks and activities. To assume this role is not stress free. It is likely to develop a 'burden' by the assumed task. Family members who are close to the patient may play the role of caregiver, well-being enhancer, diversity of tasks fulfiller, minimizer and managing suffering, palliative care facilitator and responsible for the continuity of care, apprentice and participant of health teams. The family caregiver often gives priority to the problems of his dependent family member, becoming almost 'invisible' to the health system. It should also be consider the relevance of this issue into future bereavement process. Considering all these aspects, the family caregiver is often considered by the healthcare teams as 'overall tasks' performers'.
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
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
Robinson, L; Stacy, R
BACKGROUND. Previous studies have demonstrated deficiencies in palliative care in the community. One method of translating the results of research into clinical practice, in order to produce more effective health care, is the development of clinical guidelines. Setting standards for such care has been performed by care teams in both hospital and hospice settings but not in primary care. AIM. This study set out to develop guidelines for primary care teams to follow in the provision of palliative care in the community using facilitated case discussions with the members of such teams, as a form of internal audit. METHOD. Five practices were randomly chosen from the family health services authority medical list. Meetings between the facilitators and primary care teams were held over a period of one year. The teams were asked to describe good aspects of care, areas of concern and suggestions to improve these, in recent cases of patient deaths. RESULTS. In total 56 cases were discussed. All practices felt that cohesive teamwork, coordinated management, early involvement of nursing staff and the identification of a key worker were essential for good terminal care. Concerns arose in clinical and administrative areas but the majority were linked to poor communication, either between patient and professionals within the primary care team or between primary and secondary care. All the positive aspects of care, concerns and suggestions were collated by the facilitators into guidelines for teams to refer to from the initial diagnosis of a terminal illness through to the patient's death and care of the relatives afterwards. CONCLUSION. Developing multidisciplinary as opposed to medical guidelines for palliative care allows primary health care teams to create standards that are acceptable to them and stimulates individuals within the teams to accept responsibility for initiating the change necessary for more effective care. The process of facilitating teams to discuss their work
The goal of palliative care is to provide the best possible quality of life for patients and their families in the process of dying as well as before, during the course of illness. Emphasis is on the role of team approach in every aspect of patient care. The moral principles of sacredness of life and the right of personal autonomy may occasionally come in conflict. The basic principle of the respect of life prohibits killing, which has been accepted in one way or another by all societies - for the reasons of survival. Similar to this, modern morality supports the principle of respecting autonomy and self-management based on informed, conscious personality of an individual. Still, if the needs of another person appear to be more important or desirable than reaching certain individual goals, then the right of an individual regarding autonomy may be legitimately limited. Decisions on not applying or terminating certain procedures must be based on thorough discussion and consideration of the nature and expected result of treatment. If the patient is not competent, then the discussion should involve a team providing care for the patient and a representative of the patient. When the physician and the team can clearly see that unfavorable effects of treatment will outweigh therapeutic benefits, then, according to medical ethics of the respecting beneficiary, the team is not obliged to provide that form of treatment. Except for palliative care, there is no medical treatment that is always obligatory. A physician that does not accept the patient's request to be killed does not limit the patient's autonomy. Autonomy is self-management and capability of the patient to kill him/herself is not limited by the physician's refusal to do so. Even in those cases when patients for various reasons say that death will be a relief, it does not mean that the physician is obliged to terminate life. The superior obligation of physicians is to alleviate pain. If euthanasia would be legal
Denvir, M A; Murray, S A; Boyd, K J
Palliative care is recommended for patients with end-stage heart failure with several recent, randomised trials showing improvements in symptoms and quality of life and more studies underway. Future care planning provides a framework for discussing a range of palliative care problems with patients and their families. This approach can be introduced at any time during the patient's journey of care and ideally well in advance of end-of-life care. Future care planning is applicable to a wide range of patients with advanced heart disease and could be delivered systematically by cardiology teams at the time of an unplanned hospital admission, akin to cardiac rehabilitation for myocardial infarction. Integrating cardiology care and palliative care can benefit many patients with advanced heart disease at increased risk of death or hospitalisation. Larger, randomised trials are needed to assess the impact on patient outcomes and experiences. 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.
Sargeant, Stephanie; Chamley, Carol
This is the first part of two articles exploring oral health problems and treatments for children receiving palliative care, successful management of which can improve considerably the quality of life for this group of children and young people. Part one includes an adapted oral health assessment tool for use in children and young people with complex and palliative healthcare needs that has the potential to help nurses identify and monitor oral health problems and prevent or minimise oral problems from developing. Part two--to be published next month--focuses on basic oral hygiene and the management of specific oral health problems.
Palliative pastoral care is not about "adding days to life, but about "adding life to days". It does not matter whether the dying process is short or long. What matters is to ensure the best possible quality of life until the very end through mindful companionship. Palliative pastoral care is a path towards a personal dying, dying where the person is taken seriously as an individual until the last moment. Palliative care includes medical assistance, careful care, psychosocial support, and counselling that addresses the spiritual needs of the dying. This palliative care includes inpatient and outpatient hospice work and accompanies not only the patients but also their relatives. It must become the standard procedure in end of life care. The palliative pastoral care also take the needs of medical staff into account: Time-consuming care for the dying exceeds the staff's time budget. A sudden death can be perceived as traumatic. In this case palliative pastoral care must perform the tasks of crisis management, crisis intervention and de-escalation. The debriefing of involved staff can prevent the development of burn-out syndrome. In the view of holistic healthcare, health insurance funds should co-finance pastoral care. Society and humanity benefit from addressing the needs of the dying. In an economically dominated environment it is a social responsibility to make dying humane.
Full Text Available According to the guidelines published by the WHO in 2010, palliative care has been defined as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” Intervention provided as a part of the palliative care has to be by health professionals who strictly work as a part of the multidisciplinary team and have been specifically trained to an optimal level of competency in the field. Two key problem areas in palliative care which a physiotherapist deals with are poor physical function and pain. This article deals with the following issues: (1 What is palliative care education and its importance? (2 Current scenario of palliative care in medical and allied fields internationally. (3 Current scenario of palliative care education in medical and allied fields in India. (4 Proposed curriculum guidelines for palliative care in physiotherapy.
Tonia C Onyeka
Full Text Available Palliative care is not just vital in controlling symptoms of the patient′s disease condition, but also aims to extend the patient′s life, giving it a better quality. However, several times in the course of management, the psychosocial impact of cancer, HIV/AIDS, and other life-limiting disease conditions may not be noticed and dealt with during the admission period, thereby giving rise to a more complex situation than the disease condition itself. This article aims to review some psychosocial issues and measures that can be taken to address them. It highlights the various roles and the importance of the clinician, nurse, social worker, and other members of the multidisciplinary team in tackling these issues and will help healthcare professionals in this field achieve better practice in the future.
Full Text Available Blood stream infections and pneumonia caused by Pseudomonas aeruginosa is associated with high mortality, especially in an immunocompromised host. A large section of the palliative care patient population has varied forms of compromised immunity due to advanced cancer or cancer treatment, organ failures, chronic autoimmune disorders, degenerative conditions, and acquired immunodeficiency syndrome. The lung is one of the most frequently involved organs in a variety of complications in an immunocompromised host and infection is the most common complication. P. aeruginosa is one of the most common pathogens associated with bronchopulmonary infections in an immunocompromised host. Routine radiological tests like chest X-ray may often be unyielding and an early and a prompt initiation of treatment reduces mortality and morbidity risk.
Full Text Available Development of palliative care (PC culture spur the need of proper and formal training. Palliative medicine is not fully recognized as an academic medical discipline due to its humanistic influences, and studies show that physicians declare to be not prepared to provide care and pain management to dying patients. Nowadays, despite leading countries in PC being considered more innovative than other countries,such as Italy, facts show that the achievement of acknowledged discipline went through a long process. In Italy,professionals from about 450 PC units and organizations need to receive a proper and homogeneous training. In Italy, palliative medicine official certification is an undergoing process advocated by a few organizations and in Bologna the Academy of the Sciences of Palliative Medicine operates since 2007 with the defined mission of developing PC culture, also within the University. In order to be as much effective in pursuing its mission, the Academy has strengthened several international cooperation programs and today is leader in PC professional training and research in Italy. The recent law and its feasibility is fastening the process of development of Palliative Care Culture in Italy even if training is not properly regulated and official certification for physician is under evaluation. In Europe, the European Association of Palliative Care is stressing the need for training programs in palliative medicine and the outcomes of the dedicated task force on official certification and specialty in Palliative Medicine will remarkably force policy makers and national councils to officially recognize the discipline.
Pollens, Robin D.
Clinical speech-language pathologists (SLPs) may receive referrals to consult with teams serving patients who have a severe and/or terminal disease. Palliative care focuses on the prevention or relief of suffering to maximize quality of life for these patients and their families. This article describes how the role of the SLP in palliative care…
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
Donna M. Wilson
Full Text Available Currently, around 55 million people die each year worldwide. That number is expected to increase rapidly with accelerating population aging. Despite growth in the number of palliative care specialists and specialist services in most countries, the prospect of an increasing number of terminally ill and dying persons is daunting. This paper attempts to answer the question: what proportion of terminally ill and dying persons require specialist palliative care services? To address this question and highlight which persons require specialist palliative care, the current state of access to specialist palliative care services and specialists in Canada and other countries is highlighted, along with available evidence-based information on specialist services utilization and the care needs of terminally ill and dying persons. Current evidence and information gaps reveal that this question cannot be answered now, but it should be answered in advance of a crisis of unmet end-of-life care needs with the rising death toll.
Zalonis, Ruth; Slota, Margaret
This article explores barriers to informed decision making in health care, and it proposes palliative care as one means of responding to the challenge of a widespread lack of autonomy in decision making. Through an exploration of research in the fields of autonomy and palliative care, the advantages of informed decision making and advance care planning by patients with advanced illness are discussed, and the implications for clinical practice and patient outcomes are described. Continuity, collaboration, and communication have a synergistic effect on autonomy. The expectation that the palliative care team will be in constant communication with the attending physician, nurses, and other specialists also promotes autonomous decision making. Patients who receive palliative care may have multiple advantages, including increased survival, improved quality of life, and opportunities for the exercise of autonomy.
Tsai, Stanley S L; Hu, Wen-Yu; Chang, Hao-Hsiang; Chang, Shan-Chwen; Chen, Chin-Yu; Chiu, Tai-Yuan
The objective of this study was to investigate the effects of educational intervention using a multimodule curriculum of palliative care on medical students, and to explore significant factors that influence improvement in beliefs of ethical decision-making. A total of 259 medical students enrolled in the "Family, Society and Medicine" course, and accepted a multimodule palliative care curriculum that included a 1-hour lecture, 1 hour of patient contact, 1 hour of literature reading, and 1 hour of discussion. A questionnaire was administered before and after the course to evaluate improvements in medical students' knowledge (principles and clinical management) of palliative care and their beliefs concerning ethical decision-making in palliative care. The students showed significant improvements after the course in their knowledge of the principles of palliative care (pretest 58.4% vs. posttest 73.1%; p less than 0.01) and clinical management of palliative care (pretest 58.8% vs. posttest 67.9%; p less than 0.01). Although their beliefs about ethical decision-making were also improved after the course, the medical students did not have a positive belief of "artificial nutrition and hydration is not always beneficial for terminal cancer patients", with a mean score of only 3.15 and 3.51 (pretest and posttest, respectively; range, 1-5). The logistic regression model showed that improvement in knowledge of either principles or clinical management did not significantly improve beliefs about ethical decision-making. A multimodule curriculum of palliative care for medical students can significantly improve their knowledge on principles of clinical management and beliefs about ethical decision-making in palliative care. As for changes in beliefs about ethical decision-making in palliative care, continued ethical and clinical training is required.
van Vliet, Liesbeth M; Gao, Wei; DiFrancesco, Daniel; Crosby, Vincent; Wilcock, Andrew; Byrne, Anthony; Al-Chalabi, Ammar; Chaudhuri, K Ray; Evans, Catherine; Silber, Eli; Young, Carolyn; Malik, Farida; Quibell, Rachel; Higginson, Irene J
Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson's Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9-88 MND, 3-25 Parkinsonism, and 0-5 MS). This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.
Rhee, John Y; Garralda, Eduardo; Torrado, Carlos; Blanco, Santiago; Ayala, Ibone; Namisango, Eve; Luyirika, Emmanuel; de Lima, Liliana; Powell, Richard A; Centeno, Carlos
Since the last comprehensive review on the development of national palliative care in Africa was undertaken 12 years ago, in 2005, we did a scoping review of peer-reviewed, published articles on palliative care development between 2005-16 for each African country. The scoping review was conducted by assessing the medical literature and including local expert recommendations of suggested articles. We did a basic quality assessment of the articles using the journals' impact factor, journal quartile, and the number of citations as suitable metrics for quality consideration. Articles published in English, Spanish, Portuguese, and French that mentioned at least one dimension of WHO's palliative care public health strategy (implementation of services, education, policies, or medicine availability) and vitality (activity by professionals or advocates) were included. Of the 518 articles found, 49 met the inclusion criteria. Information on 26 (48%) of 54 African countries was found. Most services were concentrated in Kenya, South Africa, and Uganda, and 14 (26%) countries showed an increase in services during this timeframe. Stand-alone palliative care policies exist in Malawi, Mozambique, Rwanda, Swaziland, Tanzania, and Zimbabwe. Postgraduate diplomas in palliative care are available in Kenya, South Africa, Uganda, and Tanzania. Restricted access to opioids, prescriber restriction laws, and a low prevalence of morphine use remain common barriers to adequate palliative care provision. Although information on palliative care is unevenly distributed, the available information showed an increased development of palliative care services in a subset of African countries. Despite this growth, however, there is still minimal to no identified palliative care development in most African countries. Copyright © 2017 Elsevier Ltd. All rights reserved.
Steiner, Jill M; Cooper, Stephanie; Kirkpatrick, James N
Valvular heart disease (VHD), particularly aortic valve disease, is prevalent with increasing incidence. When surgery is not possible, or when risks outweigh benefits, percutaneous treatment options may offer effective alternatives. However, procedures may not always go as planned, and frail patients or those whose symptoms are caused by other comorbidities may not benefit from valve intervention at all. Significant effort should be made to assess frailty, comorbidities and patient goals prior to intervention. Palliative care (PC) should play a critical role in the care of patients with severe valve disease. PC is specialised medical care that aims to optimise health-related quality of life by managing symptoms and clarifying patient values and goals of care. It should be implemented at the time of diagnosis and continue throughout the disease course. Because of the paucity of studies dedicated to the provision of PC to patients with advanced VHD, further research is needed. © 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.
Coverage and development of specialist palliative care services across the World Health Organization European Region (2005–2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries
Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David
Background: The evolution of the provision of palliative care specialised services is important for planning and evaluation. Aim: To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region – home care teams, hospital support teams and inpatient palliative care services. Design and setting: Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Results: Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005–2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Conclusion: Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient
Coverage and development of specialist palliative care services across the World Health Organization European Region (2005-2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries.
Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David
The evolution of the provision of palliative care specialised services is important for planning and evaluation. To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region - home care teams, hospital support teams and inpatient palliative care services. Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005-2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population. © The
Brand, Alison H; Harrison, Amanda; Kumar, Koshila
Given our ageing population and the increase in chronic disease, palliative care will become an increasingly important part of doctors' workloads, with implications for palliative care education. This study used a mixed methods strategy to evaluate second-year medical students' learning outcomes and experiences within a palliative care education program. Analysis of pre- and post-test scores showed a significant improvement in students' attitudinal scores, but no change in knowledge as measured by multiple-choice questions. Analysis of qualitative data revealed that students' learning experience was marked by a lack of clear learning objectives and experiential learning opportunities. Students also reported divergent reactions to death and dying and noted that palliative care was different from other areas of clinical medicine. This study revealed that palliative care teaching results in improved attitudes toward palliative care, reflecting the holistic and patient-focused nature of the palliative care curriculum.
Davies, Joanna M; Gao, Wei; Sleeman, Katherine E; Lindsey, Katie; Murtagh, Fliss E; Teno, Joan M; Deliens, Luc; Wee, Bee; Higginson, Irene J; Verne, Julia
Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.
Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim
Purpose To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care. PMID:23040412
Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T; Ahles, Tim
The purpose of this study was to understand oncology clinicians' perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. This was a qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: (1) treating the whole patient, (2) focusing on quality versus quantity of life, (3) “some patients just want to fight,” and (4) helping with transitions; timing is everything. Five themes comprised oncologists' views on the complementary role of palliative care: (1) “refer early and often,” (2) referral challenges: “Palliative” equals “hospice”; “Heme patients are different,” (3) palliative care as consultants or co-managers, (4) palliative care “shares the load,” and (5) ENABLE II facilitated palliative care integration. Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care.
Penrod, Joan D.; Pronovost, Peter J.; Livote, Elayne E.; Puntillo, Kathleen A.; Walker, Amy S.; Wallenstein, Sylvan; Mercado, Alice F.; Swoboda, Sandra M.; Ilaoa, Debra; Thompson, David A.; Nelson, Judith E.
Objectives High-quality care for intensive care unit patients and families includes palliative care. To promote performance improvement, the Agency for Healthcare Research and Quality’s National Quality Measures Clearinghouse identified nine evidence-based processes of intensive care unit palliative care (Care and Communication Bundle) that are measured through review of medical record documentation. We conducted this study to examine how frequently the Care and Communication Bundle processes were performed in diverse intensive care units and to understand patient factors that are associated with such performance. Design Prospective, multisite, observational study of performance of key intensive care unit palliative care processes. Settings A surgical intensive care unit and a medical intensive care unit in two different large academic health centers and a medical-surgical intensive care unit in a medium-sized community hospital. Patients Consecutive adult patients with length of intensive care unit stay ≥5 days. Interventions None. Measurements and Main Results Between November 2007 and December 2009, we measured performance by specified day after intensive care unit admission on nine care process measures: identify medical decision-maker, advance directive and resuscitation preference, distribute family information leaflet, assess and manage pain, offer social work and spiritual support, and conduct interdisciplinary family meeting. Multivariable regression analysis was used to determine predictors of performance of five care processes. We enrolled 518 (94.9%) patients and 336 (83.6%) family members. Performances on pain assessment and management measures were high. In contrast, interdisciplinary family meetings were documented for <20% of patients by intensive care unit day 5. Performance on other measures ranged from 8% to 43%, with substantial variation across and within sites. Chronic comorbidity burden and site were the most consistent predictors of care
As jurists, doctors, and ethicists are increasingly engaged in the debate as to whether and how to legalize euthanasia as a matter of public policy, less debate takes place on what it is submitted ought naturally to come before, i.e. the affirmation of a legal right to palliative care. In Israel, the draft law The Terminally Ill Patient (2001) includes a palliative care provision. It is submitted that such provision, laudable as it is, appears within a euthanasia-oriented framework and is given too limited a scope. Hence the suggestion that palliative care be given an autonomous role, and be recognized as a positive legal right.
Full Text Available RG Duenk,1 C Verhagen,1 EM Bronkhorst,2 RS Djamin,3 GJ Bosman,4 E Lammers,5 PNR Dekhuijzen,6 KCP Vissers,1 Y Engels,1,* Y Heijdra6,* 1Department of Anesthesiology, Pain and Palliative Medicine, 2Department of Health Evidence, Radboud University Medical Center, Nijmegen, 3Department of Respiratory Medicine, Amphia Hospital, Breda, 4Department of Respiratory Medicine, Slingeland Hospital, Doetinchem, 5Department of Respiratory Medicine, Gelre Hospitals, Zutphen, 6Department of Pulmonary Diseases, Radboud University Medical Center, Nijmegen, the Netherlands *These authors contributed equally to this work Background: Our objective was to develop a tool to identify patients with COPD for proactive palliative care. Since palliative care needs increase during the disease course of COPD, the prediction of mortality within 1 year, measured during hospitalizations for acute exacerbation COPD (AECOPD, was used as a proxy for the need of proactive palliative care.Patients and methods: Patients were recruited from three general hospitals in the Netherlands in 2014. Data of 11 potential predictors, a priori selected based on literature, were collected during hospitalization for AECOPD. After 1 year, the medical files were explored for the date of death. An optimal prediction model was assessed by Lasso logistic regression, with 20-fold cross-validation for optimal shrinkage. Missing data were handled using complete case analysis.Results: Of 174 patients, 155 patients were included; of those 30 (19.4% died within 1 year. The optimal prediction model was internally validated and had good discriminating power (AUC =0.82, 95% CI 0.81–0.82. This model relied on the following seven predictors: the surprise question, Medical Research Council dyspnea questionnaire (MRC dyspnea, Clinical COPD Questionnaire (CCQ, FEV1% of predicted value, body mass index, previous hospitalizations for AECOPD and specific comorbidities. To ensure minimal miss out of patients in need
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.
Harstäde, Carina Werkander; Blomberg, Karin; Benzein, Eva; Östlund, Ulrika
Previous research has proposed that persons in need of palliative care often have a loss of functions and roles that affects social and existential self-image. Moreover, these individuals also commonly suffer from complex multisymptoms. This, together with the situation of facing an impending death, can lead to a loss of dignity. Therefore, supporting these persons' dignity is a crucial challenge for professional nurses. The 'Dignity Care Intervention' addresses the multidimensionality of dignity by identifying patients' dignity-related concerns and suggests care actions to address them. At the present, the Dignity Care Intervention is adapted for implementation in Swedish care settings. Because expressions of dignity are influenced by culture, and an overview of care actions in a Swedish context is lacking, this integrative review aimed to find suggestions from Swedish research literature on what kind of care actions can preserve dignity. An integrative literature review was conducted using the databases SwePub and SweMed+. Articles published from 2006 to 2015 and theses published from 2000 to 2015 were searched for using the terms 'dignity' and 'palliative care'. Result sections of articles and theses were reviewed for dignity-conserving care actions synthesised by thematic analysis and categorised under themes and subthemes in Chochinov's model of dignity. Fifteen articles and 18 theses were included together providing suggestions of care actions in all themes and subthemes in the dignity model. Suggested care actions included listening, communication, information, symptom control, facilitating daily living and including patients in decision-making. Additionally, nurses' perceptiveness towards the patients was a core approach. The review offers culturally relevant suggestions on how to address specific dignity-related concerns. The adapted Dignity Care Intervention will be a way for Swedish nurses to provide person-centred palliative care that will conserve
Souza, Paola Nóbrega; de Miranda, Erique José Peixoto; Cruz, Ronaldo; Forte, Daniel Neves
Objective To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. Methods This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Results Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Conclusion Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit. PMID:27737420
Souza, Paola Nóbrega; Miranda, Erique José Peixoto de; Cruz, Ronaldo; Forte, Daniel Neves
To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit.
Ferrell, Betty R; Temel, Jennifer S; Temin, Sarah; Alesi, Erin R; Balboni, Tracy A; Basch, Ethan M; Firn, Janice I; Paice, Judith A; Peppercorn, Jeffrey M; Phillips, Tanyanika; Stovall, Ellen L; Zimmermann, Camilla; Smith, Thomas J
Purpose To provide evidence-based recommendations to oncology clinicians, patients, family and friend caregivers, and palliative care specialists to update the 2012 American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) on the integration of palliative care into standard oncology care for all patients diagnosed with cancer. Methods ASCO convened an Expert Panel of members of the ASCO Ad Hoc Palliative Care Expert Panel to develop an update. The 2012 PCO was based on a review of a randomized controlled trial (RCT) by the National Cancer Institute Physicians Data Query and additional trials. The panel conducted an updated systematic review seeking randomized clinical trials, systematic reviews, and meta-analyses, as well as secondary analyses of RCTs in the 2012 PCO, published from March 2010 to January 2016. Results The guideline update reflects changes in evidence since the previous guideline. Nine RCTs, one quasiexperimental trial, and five secondary analyses from RCTs in the 2012 PCO on providing palliative care services to patients with cancer and/or their caregivers, including family caregivers, were found to inform the update. Recommendations Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services.
Akai, Namika; Fujita-Hamabe, Wakako; Tokuyama, Shogo
The treatment of cancer pain requires an individually-targeted multidimensional team approach. Further, the basic act for the Anti-Cancer Measures describes that medical staff including pharmacists should participate in the palliative care. Thus it is obvious that community pharmacists should also participate in palliative home care. In addition, a misunderstanding about opioids remains strong in Japan, which could be one of the barriers to palliative home care. In our previous report, we clarified for local residents the importance of educational activity using opioids as a new role for community pharmacists, and it was recognized of great significance by these pharmacists. In this study, we conducted a questionnaire survey among medical doctors, nurses, care managers and home helpers about the need and meaning of the educational activity performed by pharmacists in palliative home care. 86.4% of respondents felt pharmacists' participation in home care was required. Furthermore, most respondents thought that misunderstanding remained about opioids in palliative home care, and believed that pharmacists could play an important role in educational activity about opioids as experts in medicine. This study clarified that other medical team members need the participation of community pharmacists in palliative home care. Therefore, it seems important for these pharmacists to be proactive in participating in such care in the future.
In December 2015 two different laws were adopted. Both are of importance for palliative care. One of the laws criminalizes commercial, "business-like" assisted suicide (§ 217 German Criminal Code), the other one aims to improve hospice and palliative care in Germany. Through the latter far-reaching changes in Social Code Books V and XI, as well as of the Hospital Finance Act have been made. This new Act to Improve Hospice and Palliative Care (HPG) focuses, amongst others, on: (a) Better funding of hospice services, by raising the minimum grant for patients in inpatient hospices paid per day by the health insurance funds by about 28.5%, and for outpatient hospice services by about 18%; (b) further development of general outpatient nursing and medical palliative care, and the networking of different service providers; (c) introduction of an arbitration procedure for service provider agreements to be concluded between the health insurance funds and the teams providing specialized home palliative care (SAPV); (d) the right to individual advice and support by the health insurance funds; (e) care homes may offer their residents advance care planning programs to be funded by the statutory health insurers; (f) palliative care units in hospitals can be remunerated outside the DRG system by per diem rates; (g) separate funding and criteria for multi-professional palliative care services within a hospital.While little concrete impact on hospice and palliative care can be expected following the new § 217 German Criminal Code, the HPG provides a good basis to improve care. For this purpose, however, which complementary and more concrete agreements are made to put the new legal regulations into practice will be crucial.
Ahsberg, Elizabeth; Carlsson, Maria
Despite increasing international interest in palliative care, little focus has been given to the role of nursing assistants, nor to research on existential issues. To investigate nursing assistants' experiences of existential issues in palliative care. An explorative study using focus group discussions as data. Seven nursing assistants working in a palliative care unit and a nursing home participated on three occasions. Data were analysed using a content analysis approach. Two overlapping domains were extracted: practical care, interpreted in themes as meeting others, the patient's body and organisational boundaries; and existential issues, interpreted as the difficult part, the valuable part and death and dying. Communication seemed to be a theme central to both domains. The results indicate that nursing assistants may give existential support in addition to practical aspects of care. The intimate interactions inherent in practical aspects of personal care create opportunities for meaningful conversations. Such conversations may constitute existential support for patients and a meaningful task for staff. © 2013 John Wiley & Sons Ltd.
Hozumi, Jun; Sumitani, Masahiko
World Health Organization has proposed that palliative medicine should be applied early in the course of the malignant diseases. Regrettably, however, palliative care has been usually provided to patients with the advanced stage of cancer, as terminal care. Recently, palliative medicine begins at the time when patients are diagnosed with cancer. In response to changes in clinical settings of palliative medicine, anesthesiologists, with substantial experience in interdisciplinary pain management, can utilize their advantages in providing palliative medicine to cancer patients: 1) use of opioid analgesics; 2) considering the biopsychosocial model of pain; 3) helping patients live as actively as possible until death; and 4) helping the family cope with the patient's illness and their own bereavement.
Oorschot, Birgitt van [Wuerzburg Univ. (Germany). Dept. of Radiation Oncology; Schuler, Michael [Wuerzburg Univ. (Germany). Inst. of Psychotherapy and Medical Psychology; Simon, Anke [HELIOS Klinikum Erfurt (Germany). Dept. of Radiation Oncology; Schleicher, Ursula [Center for Radiotherapy, Dueren (Germany); Geinitz, Hans [Technische Univ. Muenchen (Germany). Dept. of Radiotherapy and Radiooncology
To evaluate patterns of care as well as effectiveness and side effects of palliative treatment in four German radiation oncology departments. All referrals in four German radiation oncology departments (two university hospitals, one academic hospital, one private practice) were prospective documented for 1 month in 2008 (2 months at one of the university hospitals). In palliatively irradiated patients, treatment aims and indications as well as treated sites and fractionation schedules were recorded. In addition, symptoms and side effects were analyzed with standardized questionnaires before and at the end of radiotherapy. During the observation period, 603 patients underwent radiation therapy in the four centers and 153 (24%, study popu-lation) were treated with palliative intent. Within the study, patients were most frequently treated for bone (34%) or brain (27%) metastases. 62 patients reported severe or very severe pain, 12 patients reported severe or very severe dyspnea, 27 patients reported neurological deficits or signs of cranial pressure, and 43 patients reported a poor or very poor sense of well-being. The most frequent goals were symptom relief (53%) or prevention of symptoms (46%). Life prolongation was intended in 37% of cases. A wide range of fractionation schedules was applied with total doses ranging from 3-61.2 Gy. Of the patients, 73% received a slightly hypofractionated treatment schedule with doses of > 2.0 Gy to ? 3.0 Gy per fraction and 12% received moderate to highly hypofractionated therapy with doses of > 3.0 Gy to 8.0 Gy. Radiation therapy led to a significant improvement of well-being (35% of patients) and reduction of symptoms, especially with regard to pain (66%), dyspnea (61%), and neurological deficits (60%). Therapy was very well tolerated with only 4.5% grade I or II acute toxicities being observed. Unscheduled termination was observed in 19 patients (12%). Palliative radiation therapy is effective in reducing symptoms, increases
Rhee, John Y; Garralda, Eduardo; Torrado, Carlos; Blanco, Santiago; Ayala, Ibone; Namisango, Eve; Luyirika, Emmanuel; de Lima, Liliana; Powell, Richard A; López-Fidalgo, Jesús; Centeno, Carlos
Palliative care (PC) research in Africa has been proposed as a fifth dimension of the World Health Organization PC Public Health Strategy. We conducted a scoping review of published articles (2005-2016) on palliative care development (PCD) in African countries. Forty-seven articles were found across 26 countries. To study whether the number of published articles on PCD in countries in Africa can be used as an indicator of PCD. This is a secondary analysis of a completed scoping review. Spearman correlations were applied to the number of published articles ("published articles") and the number of published articles with a coauthor from a high-income country (HIC) ("HIC published articles") with level of PCD using Lynch et al's updated world map (PC World Map) as a proxy. A subanalysis was undertaken for Anglophone versus non-Anglophone countries. There were positive Spearman correlations (r) between the PC World Map's levels and published articles (r = 0.73; p < 0.001), and with HIC published articles (r = 0.68; p < 0.001). For Anglophone countries, the r was statistically significant (p < 0.001) at 0.69 and 0.70, versus 0.58 and 0.45 for non-Anglophone countries for published articles and HIC published articles, respectively. Kruskal-Wallis test showed a statistically significant difference between Anglophone and non-Anglophone countries for both published articles and HIC published articles (p < 0.01). Published articles and HIC published articles on PCD in Africa had strong positive r's with the PC World Map. These measures may be considered as two indicators of PCD for countries in Africa, particularly for Anglophone countries.
Palliative care advocates a holistic, multiprofessional approach to the care of people with life-threatening disease. In addition to the control of physical symptoms attention should also be paid to psychosocial, cultural and spiritual aspects of the patient's experience of illness. Guidance documents and research evidence reflect the complexity of the patient's journey and the need to regularly assess these areas of need over time. Cultural background can shape how patients respond to life-threatening illness, as can the beliefs held by the patients, whether religious or more broadly spiritual. Research evidence shows the importance of identifying and addressing cultural and spiritual aspects of care held by patients, families and staff. These are often neglected in clinical practice due to the focus on biomedical concerns and staff discomfort in engaging with beliefs and culture. Recent studies have highlighted gaps in the research, and some methodological difficulties and indicate many patients welcome healthcare staff enquiring about the importance of their beliefs and culture. Identifying research priorities is necessary to guide future research and strengthen the evidence base.
Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C
With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future.
Dantas, Margarida Maria Florêncio; Amazonas, Maria Cristina Lopes de Almeida
This paper presents a reflection about being terminally ill and the various ways that the subject has at its disposal to deal with this event. The objective is to understand the experience of palliation for patients undergoing no therapeutic possibilities of cure. The methodology of this study has the instruments to semi-structured interview, the participant observation and the field diary, and the Descriptive Analysis of Foucault's inspiration how the narratives of the subjects were perceived. The Results of paper there was the possibility of looking at the experience of illness through the eyes of a subject position assumed by the very sick. As conclusion we have than when choosing palliative care, the terminally ill opts for a way to feel more comfortable and resists the impositions of the medical model of prolonging life. O presente trabalho traz uma reflexão a respeito do ser um doente terminal e das várias maneiras que o sujeito tem a seu dispor para lidar com esse acontecimento. Nosso objetivo foi compreender a experiência da paliação por sujeitos doentes sem possibilidades terapêuticas de cura. A metodologia deste estudo teve como instrumentos a Entrevista Narrativa, a Observação Participante e o Diário de Campo, sendo a Análise Descritiva de inspiração foucaultiana o modo como as narrativas dos sujeitos foram percebidas. O resultado do estudo mostrou a possibilidade de olhar a experiência do adoecer através da ótica de uma posição de sujeito assumida pelo próprio enfermo. E concluímos que ao escolher os cuidados paliativos, o doente terminal opta por um modo de se sentir mais confortável e resiste às imposições do modelo médico de prolongamento da vida.
Daniele, Alberto; Ferrero, A; Fuso, L; Mineccia, M; Porcellana, V; Vassallo, D; Biglia, N; Menato, G
Malignant bowel obstruction (MBO) is usually a pre-terminal event in patients with ovarian cancer. However, because of the lack of data in literature, decisions around surgical intervention, non-resectional procedures, or medical treatment of MBO in patients with ovarian cancer cannot be lightly undertaken. We analyzed medical and surgical procedures, performance status, nutritional status, cachexia, and their prognostic value in this group of patients. We retrospectively selected all consecutive patients with recurrent ovarian cancer who received medical or surgical treatment for MBO between October 2008 and January 2014 at the Academic Department of Gynecological Oncology of Mauriziano Hospital of Turin (Italy). We found 40 patients: 18 of them underwent medical treatment and 22 of them were submitted to surgery. In the group of surgery, the hospitalization was shorter (p 0.02), the pain reduction was more effective (p 0.001), the number of chemotherapy lines was higher (p 0.03), and re-obstruction was more rare (p 0.02). Between the two groups, we did not find any differences in post-palliation episodes of vomit (p 0.83), type of diet (p 0.34), ability to return home (p 0.72), and death setting (p 0.28). Median survival after palliation was longer in the group of surgery (p 0.025). Cachexia, low performance status, and poor nutritional status were significant predictors of worse survival after MBO, independently by the treatment. Surgery has to be considered in patients without serious contraindications; otherwise, a medical protocol, including antisecretory drugs, is the standard of care in frail patients.
Martin, Ang Seng Hock; Costello, John; Griffiths, Jane
Majority of the progress and development in palliative care in the last decade has been improvements in physical aspects of treatment, namely pain and symptom management. Psychosocial aspects of care have improved, although not enough to meet the needs of many patients and family members. This is evident in many parts of the world and notably in Singapore, where palliative care is seen as an emerging medical and nursing specialty. To discuss the implementation of the SAGE and THYME communication model in a palliative care context. The article examines the use of the model and how its implementation can improve communication between patients and nurses. The model works by reviewing contemporary developments made in relation to improving communication in palliative care. These include, highlighting the importance of meeting individual needs, therapeutic relationship building, and advanced communication training within a Singaporean context. The implementation of the SAGE and THYME model can be a useful way of enabling nurses to improve and maintain effective communication in a medically dominated health care system. The challenges and constraints in educating and training nurses with limited skills in palliative care, forms part of the review, including the cultural and attitude constraints specific to Singaporean palliative care.
Mahin-Babaei, Fariba; Hilal, Jamal; Hughes, Julian C
Interest in palliative care for people with dementia has been around for over two decades. There are clinical and ethical challenges and practical problems around the implementation of good quality palliative care in dementia. This narrative review of the literature focuses on the rationale or basis for services, some of the ethical issues that arise (particularly to do with artificial nutrition and hydration) and on the provision and implementation of services. We focus on the most recent literature. The rationale for palliative care for people with dementia is based on research and on an identified need for better clinical care. But the research largely demonstrates a paucity of good quality evidence, albeit particular interventions (and non-interventions) can be justified in certain circumstances. Numerous specific clinical challenges in end-of-life care for people with dementia are ethical in nature. We focus on literature around artificial nutrition and hydration and conclude that good communication, attention to the evidence and keeping the well-being of the person with dementia firmly in mind will guide ethical decision-making. Numerous challenges surround the provision of palliative care for people with dementia. Palliative care in dementia has been given definition, but can still be contested. Different professionals provide services in different locations. More research and education are required. No single service can provide palliative care for people with dementia.
Full Text Available Abstract Background There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Often carers are expected to make decisions. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement. Design/Methods We have used the MRC complex interventions framework, a "bottom-up" methodology, to develop an intervention for patients with advanced dementia and their carers aiming to 1 define end of life care needs for both patients and carers, 2 pilot a palliative care intervention and 3 produce a framework for advance care planning for patients. The results of qualitative phase 1 work, which involved interviews with carers, hospital and primary care staff from a range of disciplines, have been used to identify key barriers and challenges. For the exploratory trial, 40 patients will be recruited to each of the control and intervention groups. The intervention will be delivered by a nurse specialist. We shall investigate and develop methodology for a phase 3 randomised controlled trial. For example we shall explore the feasibility of randomisation, how best to optimise recruitment, decide on appropriate outcomes and obtain data for power calculations. We will evaluate whether the intervention is pragmatic, feasible and deliverable on acute hospital wards and test model fidelity and its acceptability to carers, patients and staff. Discussion Results of qualitative phase 1 work
Robinson, Louise; Dickinson, Claire; Bamford, Claire; Clark, Alexa; Hughes, Julian; Exley, Catherine
Advance care planning comprises discussions about an individual's wishes for future care while they have capacity. To explore professionals' experiences on the implementation of advance care planning in two areas of clinical care, dementia and palliative care. Qualitative study, focus groups and individual interviews. North East of England. Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organisations and the legal sector. Fourteen focus groups and 18 interviews were held with 95 participants. While professionals agreed that advance care planning was a good idea in theory, implementation in practice presented them with significant challenges. The majority expressed uncertainty over the general value of advance care planning, whether current service provision could meet patient wishes, their individual roles and responsibilities and which aspects of advance care planning were legally binding; the array of different advance care planning forms and documentation available added to the confusion. In dementia care, the timing of when to initiate advance care planning discussions was an added challenge. This study has identified the professional, organisational and legal factors that influence advance care planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of advance care planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of advance care planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.
Ahia, Chad L; Blais, Christopher M
Primary palliative care consists of the palliative care competencies required of all primary care clinicians. Included in these competencies is the ability to assist patients and their families in establishing appropriate goals of care. Goals of care help patients and their families understand the patient's illness and its trajectory and facilitate medical care decisions consistent with the patient's values and goals. General internists and family medicine physicians in primary care are central to getting patients to articulate their goals of care and to have these documented in the medical record. Here we present the case of a 71-year-old male patient with chronic obstructive pulmonary disorder, congestive heart failure, and newly diagnosed Alzheimer dementia to model pertinent end-of-life care communication and discuss practical tips on how to incorporate it into practice. General internists and family medicine practitioners in primary care are central to eliciting patients' goals of care and achieving optimal end-of-life outcomes for their patients.
Zargham-Boroujeni, Ali; Zoafa, Aniyehsadat; Marofi, Maryam; Badiee, Zohreh
Clinical guidelines are important instruments for increasing the quality of clinical practice in the treatment team. Compilation of clinical guidelines is important due to special condition of the neonates and the nurses facing critical conditions in the neonatal intensive care unit (NICU). With 98% of neonatal deaths occurring in NICUs in the hospitals, it is important to pay attention to this issue. This study aimed at compilation of the neonatal palliative care clinical guidelines in NICU. This study was conducted with multistage comparative strategies with localization in Isfahan in 2013. In the first step, the components of the neonatal palliative care clinical guidelines were determined by searching in different databases. In the second stage, the level of expert group's consensus with each component of neonatal palliative care in the nominal group and focus group was investigated, and the clinical guideline was written based on that. In the third stage, the quality and applicability were determined with the positive viewpoints of medical experts, nurses, and members of the science board of five cities in Iran. Data were analyzed by descriptive statistics through SPSS. In the first stage, the draft of neonatal palliative care was designed based on neonates', their parents', and the related staff's requirements. In the second stage, its rank and applicability were determined and after analyzing the responses, with agreement of the focus group, the clinical guideline was written. In the third stage, the means of indication scores obtained were 75%, 69%, 72%, 72%, and 68% by Appraisal of Guidelines for Research and Evaluation (AGREE) instrument. The compilation of the guideline can play an effective role in provision of neonatal care in nursing.
García-Salido, Alberto; Santos-Herranz, Paula; Puertas-Martín, Verónica; García-Teresa, María Ángeles; Martino-Alba, Ricardo; Serrano-González, Ana
The creation of paediatric palliative care units (PPCU) could optimise the management of children with palliative focus after admission to a paediatric intensive care unit (PICU). This study describes the clinical and epidemiological characteristics of children referred from PICU to the UCPP of the Autonomous Community of Madrid (CAM). The overall treatment, relapses, re-admissions, and deaths, if occurred, are described. A retrospective review was performed using the medical records from children transferred from the CAM paediatric intensive care units to the paediatric palliative care unit (1 March 2008-31 January 2015). A total of 41 patients were included (26 male/15 female) with a median age of 33 months (range 1-228). In the follow by the UCPP follow-up, the main approaches were respiratory (invasive ventilation with tracheostomy tube 8/41), nutritional (gastrostomy in 20/41), and pharmacological (anti-epileptics in 29/41 and 34/41 on antibiotic treatment). Hospital re-admission was required by 11/41 patients, with no re-admissions to PICU. Of the 13/41 patients who died, 9/13 was at home, with all of them accompanied by the primary caregivers and family, and only 1/9 with the presence of the home team. The palliative approach at home is feasible in children, and the integration of UCPP could optimise the comprehensive care of previously critically ill children. It is necessary to achieve an optimal domiciliary care should be achieved, and not just because of patient death. More observational, multicentre and prospective studies are needed to confirm these findings. Copyright © 2016. Publicado por Elsevier España, S.L.U.
Siles González, José; Solano Ruiz, Maria Del Carmen
The objective of this study is to describe the evolution of palliative care in order to reflect on the possibility of its origin in primitive cultures and their relationship with the beginnings of the cult of the dead. It describes the change in the symbolic structures and social interactions involved in palliative care during prehistory: functional unit, functional framework and functional element. The theoretical framework is based on cultural history, the dialectical structural model and symbolic interactionism. Categorization techniques, cultural history and dialectic structuralism analyses were performed. Palliative care existed in primitive societies, mostly associated with the rites of passage with a high symbolic content. The social structures - functional unit, functional framework and functional element - are the pillars that supported palliative care in prehistory societies.
Kurita, Geana Paula; Benthien, Kirstine Skov; Sjøgren, Per;
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......) 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. CONCLUSIONS: During palliative care, a substantial number of patients remained cognitively impaired or developed......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...
Dumont, Serge; Jacobs, Philip; Turcotte, Véronique; Turcotte, Stéphane; Johnston, Grace
Few data are available on the costs occurring during the palliative phase of care and on the sharing of these costs in rural areas. This study aimed to evaluate the costs related to all resources used by rural palliative care patients and to examine how these costs were shared between the public healthcare system (PHCS), patients' families, and not-for-profit organizations (NFPOs). A prospective longitudinal study was undertaken of 82 palliative care patients and their main informal caregivers in rural areas of four Canadian provinces. Telephone interviews were completed at two-week intervals. The mean total cost per patient for a six-month participation in a palliative care program was CA$31,678 +/- 1,160. A large part of this cost was attributable to inpatient hospital stays and was assumed by the PHCS. The patient's family contributed less than a quarter of the mean total cost per patient, and this was mainly attributable to caregiving time.
Warth, Marco; Kessler, Jens; Kotz, Svenja; Hillecke, Thomas K; Bardenheuer, Hubert J
... of a music therapy intervention working with vibroacoustic stimulation in palliative care. Nine participants suffering from advanced cancer took part in single-sessions of music therapy, lasting for 30 min...
Neergaard, Mette Asbjørn
involved in care for terminally ill cancer patients, only little is known about how the palliation efforts are perceived, a knowledge that is vital to make improvements. We aimed to analyse the quality of palliative home care based on evaluations by the relatives and the primary and secondary health care...... 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...... to the phenomenological approach.The interviews will form the basis of a survey of 500 episodes of palliative home care as evaluated by relatives, GPs and district nurses.Results. These results are the preliminary results from the first interviews with GPs. Three themes emerged from the interviews: 1) The key persons...
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.
Crooks, Valorie A; Castleden, Heather; Hanlon, Neil; Schuurman, Nadine
Palliative care is delivered by a number of professional groups and informal providers across a range of settings. This arrangement works well in that it maximizes avenues for providing care, but may also bring about complicated 'politics' due to struggles over control and decision-making power. Thirty-one interviews conducted with formal and informal palliative care providers in a rural region of British Columbia, Canada, are drawn upon as a case study. Three types of politics impacting on palliative care provision are identified: inter-community, inter-site, and inter-professional. Three themes crosscut these politics: ownership, entitlement, and administration. The politics revealed by the interviews, and heretofore underexplored in the palliative literature, have implications for the delivery of palliative care. For example, the outcomes of the politics simultaneously facilitate (e.g. by promoting advocacy for local services) and serve as a barrier to (e.g. by privileging certain communities/care sites/provider) palliative care provision.
Ferrer, Rebecca A; Padgett, Lynne; Ellis, Erin M
Although laboratory-based research on emotion and decision-making holds the distinct advantage of rigorous experimental control conditions that allow causal inferences, the question of how findings in a laboratory generalize to real-world settings remains. Identifying ecologically valid, real-world opportunities to extend laboratory findings is a valuable means of advancing this field. Palliative care-or care intended to provide relief from serious illness and aging-related complications during treatment or at the end of life-provides a particularly rich opportunity for such work. Here, we present an overview of palliative care, summarize existing research on emotion and palliative care decision-making, highlight challenges associated with conducting such research, outline examples of collaborative projects leveraging palliative care as a context for generating fundamental knowledge about emotion and decision-making, and describe the resources and collaborations necessary to conduct this type of research. In sum, palliative care holds unique promise as an emotionally laden context in which to answer fundamental questions about emotion and decision-making that extends our theoretical understanding of the role of emotion in high-stakes decision-making while simultaneously generating knowledge that can improve palliative care implementation. (PsycINFO Database Record
Meghani, Salimah H; MacKenzie, Meredith A; Morgan, Brianna; Kang, Youjeong; Wasim, Anum; Sayani, Saleem
The availability of smartphone applications has increased rapidly including applications related to palliative care. The scope of these available apps has not been synthesized. The purpose of this study was to identify and review available palliative care-related smartphone applications for clinicians. Smartphone application platform stores, for example, App Store iOS, Google Play Store, Windows App-Microsoft Store, and Blackberry World App store were searched (December 2016) using relevant key words. Forty-six palliative care applications targeting clinicians were identified, including clinical guidelines (n = 17), advance care planning (n = 9), training materials in palliative care (n = 7), and pharmaceutical tools (n = 7), and platforms for distributing current palliative care news, articles, and opinions (n = 6). The majority of the applications were free and available in English. The most common platforms were Android and iOS. The number of palliative care apps targeting clinicians has increased dramatically for the past five years. However, many apps did not report adequate information to judge the evidence upon which the apps were based.